This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

Patient Victim Stories

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From Patient JD

She was taking 150mcgs Levothyroxine for many years and feels this has caused her a lot of damage. She remained constantly tired, put on a tremendous amount of weight very quickly, awoke every morning with a blocked nose and headache and had many other hypothyroid symptoms. Unfortunately for her, she says that even after the thyroidectomy, two of the worst hyperthyroid symptoms remained. These were dreadful overheating and a constantly fast heartbeat. She says it is 99 whilst sitting and if she moves around it goes up to 115 to 127.

Because Mrs J D had had a sub total thyroidectomy, the hospital put her on a register W.A.F.U.R. (Welsh Automated Follow Up Register) who write to her every January telling her that she should make an appointment with her surgery as they have the equipment there to test her thyroid blood levels. Every year no matter how ill she has felt, she has received a follow up letter from the hospital which reads: NORMAL RESULT NOTIFICATION. “The results of your recent check-up are now available and we are able to confirm that everything is satisfactory”. She says that it is quite funny really because she has kept most, if not all of these notifications because she has never felt that this was right but, as she comments, how can you argue with a blood test?

She says that she has a very caring doctor and she appreciates that General Practitioners cannot know everything about everything, but she is constantly having blood tests taken and recent ones showing that she has an abnormality with her liver. Apparently, her GP thinks this has been caused by her thyroid problems. However, according to W.A.F.U.R. she has no thyroid problems!

Mrs J D says that thankfully, last September, she found the Thyroid Patients Advocacy-UK Internet Support Group and read a lot about thyroid blood tests not always being accurate and that 24 hour salivary or urine tests should be undertaken to find out whether her adrenals were stressed because of the strain of illness she had been coping with over the past years. She therefore organised private tests and a saliva test, which came back with the result that she is suffering from Hashimoto’s thyroiditis and low adrenal reserve. She has just completed this years W.A.F.U.R. test (January 2006) and once again, they declare NORMAL RESULTS NOTIFICATION. She says that this is unbelievable.

She saw a Specialist privately who told her to leave off the Levothyroxine. Within weeks I realised I was no longer waking up with a blocked nose and headache and the muscle aches in my shoulders and tops of my arms had disappeared.

Her adrenals are being treated and she says she feels that at the moment, she is not getting as overheated, so maybe there is a light at the end of a very long tunnel. She realises there is a long way to go yet, as after all, she has been ill for around fifteen years. She says that if only there had been these wonderful specialists, who are prepared to stick their necks above the parapet for the likes of patients like herself and also the Thyroid Patients Advocacy Group to enable her to find them, then maybe she would not have wasted such a large and important part of her life suffering under the hands of the NHS.

From Patient IW
It is some of the NHS General Practitioners and hospital Endocrinologist Consultants practising in the Fylde Coast area that should be before this panel that were unable/unwilling to treat my conditions which were investigated singularly only. Undertaking two full nights and a day sleep tests in hospital for Sleep apnea and Narcolepsy. Hearing tests for deafness, eye measurement tests for a protruding left eye, Dermatologists for possible cancer when my dry skin broke out and a Colonosopy for chronic constipation. These were just some of the problems.

Finally being diagnosed as ME by the GP and stating what more do you expect me to do? and that I had to LIVE WITH IT and offered me anti depressants.

I was fortunate to find Dr Gordon R B Skinner in 2003; he looked collectively at my symptoms, including a huge tongue, diagnosing Hypothyroidism after taking blood tests for T3, T4 and TSH. Initially, medication of 25 micrograms Levothyroxin tablets was prescribed.

I have since found that the NHS hospitals on the Fylde Coast only process blood samples for the TSH (Thyroid Stimulating Hormone) when a thyroid problem is suspected, and if it shows in the normal range no other blood tests are carried out to save on costs. In my case normal TSH results was not a hard and fast rule for diagnosis.

It has taken four long years to regain my health with the help of Thyroxine together with Armour Thyroid, which suits me better that has restored me back to optimum health, after Nine years of gradually being unable to walk or even hold my head up without support due to muscle degeneration. Strong painkillers are no longer required.

I was unable to think. Sleeping for 16 hours or longer per day. In fact feeling very ill indeed. Unable to earn a living, I lived by using credit cards for years until reaching retirement age. No help was forthcoming from the multiple GP practice I was registered with to obtain any sickness benefit.
I feel I was totally let down by the system

I now reside in the Manchester area and have an understanding GP. Where I have quarterly blood tests taken for, T3, T4 and TSH, which it appears, is standard practice in this area. Which are forwarded to Dr G Skinner. However, I was firstly referred to an Endocrinologist Consultant at a Manchester hospital who regarded my medical history before Dr G Skinner as a horror story. Therefore, prescribing Thyroxin for life on the NHS as previously supplied privately by Dr Skinner. He could not comprehend why my GP was reluctant to supply the same without his intervention.

Without Dr Gordon R B Skinners treatment I would possibly not be here to write this letter today.

I fear if his ability to practice is impaired by a ruling, and without the prescribed treatment of Armour Thyroid (this was the usual treatment for hypothyroidism before the synthetic thyroxine drug became available) my health will deteriorate and my standard of life will again be in jeopardy.

From Patient KF
This was diagnosed recently and I have been started on Fluvoxamine for ‘clinical depression and OCD’. Why do I think my thyroid is at fault?? Well because recently two of my four sisters, one older and one younger have been diagnosed with underactive thyroid. I have been told my TSH is normal and the lab has ‘lost’ the sample from last Wednesday requesting, liver function, TSH and T4. So I went to my doc on Monday 10th to get the results and she told me that I needed to go and get my blood taken again. This time I asked for T3 and antibodies as well as T4, didn’t know about other stuff.

I have been told my cholesterol is raised total=5.7 LDL is over 3. So this is my thought, I have one patch of white skin (OK I am white but I mean not much pigment) so ? vitiligo, which my daughter has, I have oral lichen planus and FSGS which is a autoimmune kidney disorder affecting the filters (glomeruli actually its called focal segmental glomerulosclerosis). I hope you are still with me.I am thinking, raised cholesterol, pre-existing autoimmune diseases x 3, depression with new diagnosis of OCD (obsessional compulsive disorder), afternoon fatigue- well fatigue full stop. Acid reflux, aches and pains, my periods stopped in August 04 age 46 10months, no further bleeding of any amount. Libido went that day too, I have constipation on and off, cold feet, weight gain following a period of illness despite eating less oh and I forgot I forget everything, even if I was just told a name, its gone!! At work I feel I have forgotten everything, my nails have vertical ridges.Thats it folks! I may be a fraud, masquerading as depression/menopause/depression as thats what my GP thinks and the family history is ‘interesting’.


From Patient SC

My family is blighted by this condition. All females, despite the severity of their health when seeking treatment, have had the greatest difficulty achieving it. With the exception of third generation children, the rest have had the misfortune of having blood tests which fall within the normal reference interval, regardless. Under these circumstances one is repeatedly tested, ignored, and made to feel a hypochondriac of the highest order, despite remaining very ill, varying in time between 12-22 years. Misdiagnosis is a nightmare. HOWEVER, if eventually diagnosed, inadequate medication has been the second nightmare. Only appropriate dosage of Thyroxine has lead to a full recovery from HYPOTHYROIDISM in our family. Moreover, once correctly treated, other diagnosed conditions of long years standing have also MIRACULOUSLY recovered.

Hereditary Hypothyroidism is ignored. All the misery of ill health in my family is the consequence. Thanks to their arbitary jurisdication, the Royal College of Physicians, the British Thyroid Association, the British Thyroid Foundation, the British Thyroid Foundation Patient Support Group, the Society for Endocrinology, the Association of Clinical Biochemists, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology & Diabetes, the British Society of Paediatric Endocrinologyand Diabetes and the Royal College of General Practitioners who endorsed the policy statement on ‘The Diagnosis and Management of Primary Hypothyroidism’ is condemming future generations of my family and many thousands of families like ours, to a lifetime of similar iniquity.

PLEASE LISTEN TO YOUR PATIENTS AND TREAT THEM WITH THE RESPECT THEY DESERVE.

Maternal grandmother:
Lifelong severe, uncontrolled Migraine
Profound fatigue and multiple food allergies
[Realistically assumed to have been Hypothyroid]

Maternal grandfather:
Healthy

Father:
Healthy – Died of prostate cancer

Mother:
Severe migraine
Hyperthyroidism
Polymyalgia Rheumatica
Myasthenia Gravis
Hypothyroidism

Self:
Osteomyelitis
Coxaki Virus
Acute migraine
Acute ileitis
Hyperthyroidism
Vertigo
Central Serous Retinopathy
Macular Degeneration [MD]
Lichen Sclerosis & Atrophicus [LS&A]
Multiple food sensitivities
Multiple adverse drug reactions
Late diagnosed and under-treated Hypothyroidism [diagnosed as ME]
Breast Cancer
Vertical Phoria

Sister 1:
Multiple Sclerosis, Breast Cancer

Brother:
Healthy

Sister 3:
Glandular Fever aged 18
Uncontrolled Migraine
Sarcoidosis
Mild Arthritis
Polymyalgia Rheumatica

Sister 4:
Glandular fever aged 18
Multiple Sclerosis
Late diagnosed but under-treated Hypothyroidism [diagnosed as ME], Bi-Polar Disorder
SUICIDE aged 40 YRS

Own Daughter:
Severe depression from puberty
Late diagnosed Hypothyroidism

Son:
Healthy

Niece/daughter of sister1:
Type 1 Diabetes and Bi-polar Disorder diagnosed close together early 30s, followed swiftly by Hypothyroidism

It would be fair to assume that all females, including those not tested, ARE, in fact, Hypothyroid and that it is this condition which has been causal in the diverse range of conditions exhibited in our family history.

My mother [87] failed to recover from Polymyalgia Rheumatica [8yrs] and Myasthenia Gravis [1yr] despite elephantine doses of supposedly appropriate drugs. Her thyroid blood tests were within the normal range and it was only under great pressure that her physicians permitted her to try boosting her thyroid with Thyroxine. She recovered from both conditions within 2-3 weeks.

When a locum later reduced her Thyroxine there was a return of all her symptoms within five days.

My youngest sister hanged herself. At her funeral her husband said that she had always improved when they could persuade her GP to increase her pathetically modest levels of Thyroxine. Alas, continually ill since glandular fever aged 18, she took matters into her own hands at the age of 40.

From Patient Victim ST
I was lucky. I was found to have a TSH of 13.8 mIU/L (0.47-6.9) free T4 12.1 pmol/L (9.7-25.) in August 1999. It took nine months of levothyroxine-only (125mcgs) to bring my TSH down to 1.17 mIU/L and my fT4 to 20.9 pmol/L. Fifteen months later, my TSH was 0.3 mIU/L, free T4 ws 29.1 pmol/L. My thyroxine was increased to 150mcgs daily. I suffered with symptoms of thyroid toxicity and the dose was reduced back to 125mcgs. Symptoms persisted, and in December 2002, I was tested again. The results showed TSH of 0.32, free T4 was 24.5 and free T3 (first time this had been tested was 3.0 (2.5-5.3).

I continued to suffer bouts of fatigue, weight gain, coldness, tiredness, sluggishness, very dry skin, hair loss, constipation, menstrual irregularities, brain fog, loss of concentration, forgetfulness and depression, ankle, hand and face oedema and very severe pain in my lower back, shoulder and under both heels which became debilitating. Worst of all, I lost both body and cranial hair and now wear a wig. I was refused a prescription of any other form of thyroid hormone replacement by the NHS.

The pain became so severe at times, that I had to lie on the floor in the lounge for 2/3 weeks at a time until it subsided. I was unable to raise myself to sit on a bucket when I needed to go to the toilet. I could not climb the stairs. At normal times, I had difficulty getting out of bed and standing from sitting in a chair or getting out of the car. I used to drop to my knees and slowly pull myself into a standing position and wait until my back settled before attempting to walk. Along with my hair loss, this was, perhaps, the worst of my symptoms. Not one of the treatments my doctor or osteopath offered relieved my symptoms. It was a waste of my time and NHS resources.

Because the levothyroxine (T4) was not relieving any of my symptoms, I decided to see a private hormone specialist, who found I was not converting the mainly inactive hormone T4 to the active hormone triiodothyronine (T3). T4 must convert to T3 through the liver, kidneys, skin brain and many other thyroid hormone receptors throughout the body.T3 is needed by every cell in your body and brain to make them function without T3 we die.

The private consultant gave me a prescription for 1 grain (60mgs) of a natural desiccated porcine thyroid extract (NDT). The brand I was prescribed was Armour Thyroid USP. NDT contains all the thyroid hormones a normal body requires, i.e. T4, T3, T2, T1 and also calcitonin for the bones.

After only 9 days, the effect on my health was stunning. The sun came out and 13 years later, it has never gone back in. I am pain free, symptom free and a very healthy and happy woman.

It is well known that the mainly inactive thyroid hormone T4 does not work for everybody, so I decided to do some research to find the reasons why many doctors refused to give patients a choice of treatment. As far as I am aware, hypothyroidism is the ONLY disease where patients are given no choice of treatment. Levothyroxine-only works for you or it does not. If it doesnt, you are told by doctors that you are suffering from a functional somatoform disorder (thank you Professor Anthony Weetman) meaning its all in your head – its your age youre depressed or You need to exercise, eat less and get a life.

NDT extract has been used safely and effectively for over 120 years. For over 50 of those years, it was the ONLY thyroid hormone replacement prescribed by every doctor for all sufferers of the symptoms of hypothyroidism. This was until the synthetic levothyroxine was manufactured, and which came into regular use around the middle of the 1970s. Thyroid extract then fell out of favour. When you understand that a patent cannot be taken out on natural products, but synthetic drugs can be patented, it makes sense that the new synthetic levothyroxine attracted the backing of Big Pharma and they have played their part in putting a stop to doctors continuing to prescribe NDT extract at the cost of over a quarter of a million patients, who continue to suffer symptoms on T4-alone.

My GP was amazed how well I looked. I asked her to prescribe thyroid extract for me. She refused, saying if an NHS endocrinologist had recommended it, instead of a private doctor, she would prescribe it. I asked to be referred to an endocrinologist but he too refused it because he said the T4 and T3 were unstable and the amounts differed in every batch. He said there had been potency problems and that it couldnt be prescribed because it wasnt licensed. I then set about more research to find whether what he told me was correct.

I was, and still am, a simple seeker after truth.

The Medicines and Healthcare Products Regulatory Agency (MHRA) told me that NHS doctors could prescribe Armour thyroid USP for those patients who didnt do well on T4 only but the responsibility lay with them, because it remained unlicensed within the UK. Armour Thyroid is a very old drug, so it was grandfathered in as being safe and effective, and therefore was never required to go through the New Drugs licensing procedure. Over the past couple of years, the MHRA have also written to me to tell me that NHS doctors can also prescribe the brands Nature Throid, Westhroid and the Canadian licensed Erfa Thyroid as well as Armour Thyroid.

I sent this evidence, along with other research I had done, to my endocrinologist and asked him to read everything. He asked me to call in and see him, and he said he was now happy to recommend Armour for me and thanked me for researching the facts. He wrote to my GP recommending that she prescribe it. My GP refused, saying that their clinic would never prescribe any drugs that were not in the British National Formulary. I mentioned that two thyroid specialists had stated that T4-alone was inappropriate for me and their practice should surely not leave me on a drug that didnt work, when there was a thyroid hormone replacement that did work for me.

A few days later, I received a letter from the Head of Practice telling me that as I had criticised their treatment protocol, they had decided it would be better if I found another doctor in another practice. My husband and I had been with this practice for over 20 years. Our local Primary Care Trust found us a new GP who was happy to prescribe Armour Thyroid, because, as he said …your endocrinologist recommended that this was the best treatment so I am happy to go along with him.

I realised that giving my endocrinologist the true facts regarding natural thyroid extract made him change his mind. I knew other interested endocrinologists may do the same, so I decided to send a copy of the MHRA response and my rebuttal to the British Thyroid Associations (BTA) statement on Armour v-T4-only therapy, and T4/T3 combination therapy – v T4 only therapy, so they too could see the facts. The BTAs statements are disappointing, biased, misleading and in parts, downright incorrect.

I sent my rebuttal to the Executive Committee of the BTA giving them scientific evidence to show many of their statements were incorrect, and asked for these to be amended, and cited almost 300 references between the two rebuttals. This request was sent to them on 19th March 2008. To date, I have received no acknowledgement, nor have their statements been amended. Doctors read these statements and follow the recommendations made by BTA, even though their statements are not backed with scientific evidence. It is appalling that doctors are accepting these, as they are nothing other than opinion.

I sent these, plus other facts about Natural Thyroid to every NHS endocrinologist (approx.800) and copies to every Primary Care Trust in the UK (360 at that time). This was the first of our TPA campaigns to try to get the NHS diagnostic and treatment protocol changed and to give patients a choice of treatment.

I received many responses from Endocrinologists, some grateful for the information, some downright rude calling thyroid extract a potion and saying that if patients believed they got better on such a medication, then that was proof that it was all in their heads, and it was their head that needed examining. Another told me You are doing hypothyroid patients a great disservice by telling them about thyroid extract because it is dangerous. He believes everybody gets well on levothyroxine only.

This is appalling!

I remain staggered at the sheer incompetence and arrogance of such medical practitioners, some holding a professorial chair. How can this happen?

My NHS endocrinologist has discussed my particular case and using natural thyroid extract as an alternative therapy with many of his colleagues, and many are also recommending NDT for those of their patients who do not do well on T4 only, which they are finding is giving many patients back their normal health. Thyroid extract is saving lives. T3 is saving lives!

He needed clarification that the T4/T3 content in Armour was standardised in every batch. I found extracts from the monograph on Armour Thyroid when tested by four USA laboratories, which showed that the T4/T3 was found to be well within the specifications laid down by the United States Pharmacopeia (USP). Sending out this information became our second campaign; again, paid for from the generous donations from TPAs members without whom, none of this would have been possible.

I have found, through TPA, that there are tens of thousands of sufferers who are being denied a correct diagnosis because their thyroid function test (TFTs) are returned within the normal reference ranges. Patients are dying, because doctors refuse to look at symptoms, do not look at the signs or even give a thorough clinical examination.They do not even bother looking into their patients family history. They are taught to give a diagnosis of hypothyroidism ONLY if their blood test results are outside the normal laboratory reference ranges. The normal reference range of Thyroid Stimulating Hormone (TSH) test is so wide in the UK, it is unmatched by any other country in the world, so hundreds of thousands slip through the net, who are being left with no option but to leave paid employment because of such ill health and trying to survive on State Benefits.

Through perseverance in disseminating information to the medical establishment and organisations concerned with thyroid disease, and, especially to the thousands of individuals who have made contact with TPA, a growing number of people, who hitherto have been unwell, for a considerable number of years in some instances, have now regained their full health and are continuing to live a normal life, in many cases no longer surviving on State Benefits, being able to return to work as useful citizens, able to look after their families, and contribute to the nations wealth.

The Royal College of Physicians (RCP) together with the BTA and UK endocrine and thyroid organisations has authored a new POLICY STATEMENT(this is NOT a Guideline) on ‘the diagnosis and management of hypothyroidism’. In this policy statement, they are clearly boycotting the use of all products containing the active thyroid hormone T3 (synthetic and natural) warning doctors they must not prescribe such products. Should doctors dare go outside their policy statement, they run the risk of losing their livelihood and career through being arraigned before the General Medical Council. No doctor is going to put himself in that situation so the poor patient is being left to suffer. We know for a fact that there are over 300,000 citizens in the UK alone who continue to suffer symptoms unnecessarily on T4-only therapy, because they are suffering with Euthyroid Hypometabolism (deficiency of thyroid hormone in the BODY) and they should be treated with the active thyroid hormone T3. These 300,000 citizens are NOT suffering with Hypothyroidism (defined as a deficiency of hormone secreted by the thyroid GLAND).

There have been hundreds of objections to the President of the RCP from doctors, researchers, scientists and patients from all over the world through letters, papers and reports, citing hundreds of references to scientific research and studies, showing their statements are wrong (many of these letters from my members and doctors are on this web site). All have pleaded with the RCP to review the guidance after examining the huge amount of evidence, but their final decision, after such a review, was that their original statement should stand unaltered. The President of the RCPs secretary wrote to me to say that the President would not be entering into any further correspondence regarding this matter. This is unbelievable. This policy statement on the diagnosing and management of primary hypothyroidism can only serve to cause harm to patients but they still refuse to listen.

TPA decided that the only way to move forward was to become a Registered Charity to enable us to collect the funding necessary to fight these organisations in whatever way we can. The Charities Commission registered TPA as a Charity in October 2010 and TPA also became a Registered Company. We have also been in contact with a lawyer with a view to taking legal action for the sake of tens of thousands of sufferers in the UK who are being refused either a proper diagnosis, or a choice of treatment the outcome could, potentially affect millions of sufferers throughout the world.

I am thankful every day of my life for natural thyroid extract which has given me back my life and my health without which, I would not be in a position to campaign for other sufferers of the disease. I wish to ensure that everybody who suffers with the symptoms of hypothyroidism will be assured a proper diagnosis and for those who need to be treated with the active thyroid hormone T3, will eventually be able to have it prescribed within the NHS to end the terrible suffering experienced by so many.

From Patient AH
I have taken Levothyroxine from 10 yrs old. My health improved and I started to live a normal life. getting very fit and healthy as a young adult.

I had my first child when 33 yrs. I suffered bad post natal depression and took anti-depressants. Built up my health again and came off anti-depressants, before having my second child. Once again hormones all over the place and ended up on anti-depressants.

I have since been on and off the anti-depressants ever since. I am a lucky thyroid patient in that I managed to keep the weight off. I don’t know if this is because of the hours spent in the gym as a young person and I have continued to walk and cycle.

I do however have a constant mucus filled nasal passage, ringing in my ears, restless feet, painful upper back, waking at 3am nightly, dry skin, exhaustion, poor memory and constantly frozen.

After a very bad time in July last year when I had weeks of breathlessness, dizziness and total exhaustion I started looking to the Internet for help. The GP checked my heart but although they have on record my Thyroid history did not think that it was anything to do with this. I now think that I was suffering either toxicosis or adrenal fatigue. I saw my acupuncturist who treated me and I gained my health. This made me return to my GP and ask for a referral to the hospital. I did as was suggested on TPA and wrote down all my symptoms, asked for the tests I wanted carrying out and explained about the incident in July. I saw a consultant who took one look at me and decided that I was fit and healthy, but he did send me for bloods. On my return visit to the consultant, I saw a different consultant, he too said how great I looked and did not want to listen to what I had to say. Thought it was OK to be on anti- depressants and that my thyroid function had nothing to do with my depression and mood swings. And the best bit actually said that Levothyroxine was ‘natural’. When he did say ‘we could try t3’, I declined as he did not want to look at me and my symptoms as a whole and would be doing it to keep me quiet. I declined his offer stating why and stood my ground on his stating that Levo was natural.

With the help of TPA and asking about when to take my levo I have already, just by taking it on a night, slept better than I had in years. I have reduced my anti-depressants slightly due to my new sleep pattern.

This one small change has already had a positive impact on my life. Had a doctor told me this years ago my life may well have been even better. My children may have not had to endure my mood swings, my partner may not have left.

We could still be a family.

From Patient All Alone in Cyprus
I’m hypothyroid but have never been diagnosed. I am on my own here, with no medical support, flying blind; I just dose myself according to how I feel, and my basal temperature. I do feel much better on Armour than when I was on no medication at all == warm hands and feet, never sick, and clear mind most of the time.
I order Armour from a company in Thailand, hoping and praying each time that Customs will let it through. The day that it is no longer allowed through Customs, I don’t know what I’ll do == perhaps make trips to Thailand to bring my meds back in my luggage. I won’t go to see a local MD who’s simply going to blow me off. Don’t the medical authorities see how much business the regular doctors are losing, because of being forced to prescribe T4-only treatment?

Just sign me,
All Alooooooone Here in Cyprus

From Patient Victim 010
On every visit to my G.P. I tried to be respectful, diplomatic and trusting of their wisdom. However, it seems that G.P’s soon tire of patients with chronic illnesses for which they can find no explanation or remedy. It started off well enough when I presented with the few most distressing symptoms looking for some help in keeping these at a manageable level, but it was obvious that I quickly became a “heartsink” case in their eyes. With more than 50 physical symptoms, it was impossible to explain in a 10 or 20 min. appointment and it was obviously not possible to write a prescription to sort all that out! So I came away frustrated, angry and depressed having been treated like a child and made to feel that I was a hypochondriac. Not surprising then that I only visited my G.P. when each particular symptom became unbearable. Also, I felt that one visit per 4 months was not unreasonable for someone who was in constant pain and at several points suicidally depressed about the deterioration in my quality of life. It felt as if, once diagnosed with CFS/M.E., I was no more than an irritation to be fobbed off with symptomatic treatment.

Having been diagnosed with Hypothyroidism, I am now looking for a doctor who will treat me as an intelligent woman with a good understanding of Human Biology and Biochemistry and as a partner in seeking better health for myself and others. While I am more than happy to continue seeing Dr Skinner privately in Birmingham, it would please me to continue to be monitored and have my medication prescribed at my local surgery. Cost is not a consideration for me in this matterit’s a matter of principle and I would like my experience to benefit other chronically ill people by improving the care they receive in their local community.

THE TROUBLE WITH BLOOD TESTS

    • Over the last 4 years my thyroid ( TSH only ) has been tested on 5 occasions.

 

    • Every result has been considered “within normal limits”and “no action requ

 

    • 2 years ago at 2.7 mU/l I was told this was “right in the middle of the normal range”and nothing to worry abou

 

    • Recently I was told at 3.6 mU/l I was still well under the upper limit of the range i.e.5

Having recognised that many clinically Hypothyroid patients have TSH levels well below 5.5 Australia has reduced the upper limit to 3.5 and the USA to 2.5. Anyone outside these parameters is treated with Thyroxine supplements.

TSH test is used as a “screening” test for thyroid problems but it only measures the output of the Pituitary Gland rather than the direct output of the Thyroid Gland. Therefore, please do not base diagnosis on this as the only biochemical measurement of thyroid function. A full panel of tests i.e.TSH, Thyroglobulin, Free and bound T3 and T4 should be considered when a patient presents with history, signs and symptoms.

From Patient 008
From around age 40 onwards (I’m now 52) I kept gaining weight along with other subtle symptoms. No Eyebrows , thinning hair on top of head,skin drier, painful muscles and joints, palpitations etc. I didnothing, putting all the vague symptoms down to onset of the perimenopause. About 2 years ago however things got really bad and notonly had I by then put on around 3 stone which i was unable to losedespite healthy eating and exercise (I’ve never eaten un healthily bythe way)I’d developped seriously bad memory loss and confusion. On topof this I started getting other vague symptoms, the most weird ofwhich was numbness in both hands at night no matter which way I slept.

This was sufficiently annoying to wake me up and I would spend severalminutes shaking my hands to get the feeling back, provoking pins andneedles. Eventually my husband packed me off to our GP who, kindlysoul, diagnosed carpal tunnel syndrome. He was about to leave it at that when I mentioned the tiredness, confusion etc. He packed me offfor a blood test, closely followed by another for thyroid antibodies and diagnosed under active thyroid caused by defective immune system.

I was started on 75mcg levothyroxine plus 2.5mg bend umethiazide to counteract a very swollen foot and puffy eye.

This seemed to have some effects and in the course of the next couple of months I lost a stone and felt physically a bit better but the mental confusion remained along with other physical symptoms which i don’t believe were apparent before taking the thyroxine. I also started having more frequent heart palpitations, particularly after bending down or activity. I had had to give up tap dancing a few years previuosly as this seemed to bring them on. Whilst they are not life threatening they are scary and uncomfortable. GP referred me to endocrynologist at this point. To date i have seen the consultant only once after about a year!!

The first 2 times I saw 2 different registrars. The first ordered a blood test for gout but never got the results back. The second DECREASED my thyroxine dosage (due to the palpitations) gave me beta blockers and sent me off for a 24 hour tape. At next visit (3 months later!) this revealed an SVT despite the fact I’d been resting in bed reading at the time!! So I was packed off for ECG and electrocardiogram. I’ve NEVER been given the results of these. Finally actually saw THE consultant who kept me waiting hour and 45 minutes and was then dismissive and packed me off to do a blood test for B12 deficiency in 10 weeks which he said he would write to me about he hasn’t and would see me in 6 months!!! I protested I felt no better and if anything worse to which he said my blood results were normal and although he could increase my dosage to 100mcg of thyroxine because of the SVTs he said only to take this every other day with 75mcg on alternate days. Try remembering this when you have no memory!! I asked about alternative treatments and said I didn’t think the thyroxine was having any effect. He dismissed this with ‘oh you’re not one of those who want to use pig thyroid that went out with the Ark and we don’t prescribe it’. Couldn’t spare longer than 30 seconds for me and was rude enough to have another woman present during my ‘consultation’ who he never introduced. Since this visit my intellectual health has further deteriorated to the point where I am finding it difficult to function in today’s fast paced modern office environment.

Went back to GP to complain about consultant’s lack of interest and care and didn’t get anywhere. The ranks are clearly closing!!! I see the GP again on Friday and he no doubt will say wait till you see the consultant as I have an appointment with him the following week. I now feel like I may as well be taking sugar pills. All the symptoms which took me to the doctors in the first place are back (with a vengeance) and on top of these I have other more annoying ones!! I find it is very difficult to explain ones symptoms and issues in today’s work place. I am a rather stoical person and tend to suffer on in silence. I have not explained the full range of symptoms to my boss but thought he was aware of the condition. Either he isn’t or he is one of those people who consistently tell me ‘Oh that’s easily treated with pills isn’t it?’ or worse still = ‘its probably your age or the menopause’. If I had a pound for every time I’ve heard that from so called colleagues I’d be rich and not need to work!!I recently foolishly agreed to take on a new role in addition to my existing one. A recent meeting proved to be my downfall and almost the last straw. I am now looking for a less intellectually challenging job as I emerged from a meeting feeling frazzled and humiliated. I am probably too quick to criticise myself but I was trying to minute the meeting ‘on line’.

Several participants were in a rush to get away to another meeting and as a result they steamed through the agenda at a pace I found impossible to keep up with either on the keyboard or in writing. As a result i had to ask them to slow down and go back over items they’d glossed over. The boss’s suggestion when I emerged clearly looking distressed ‘ next time you can’t keep up i suggest you take a paper copy in with you and write on it’!!! I nearly threw the laptop at him and stormed out!! AS it was I spent the rest of the day feeling close to tears and feeling pretty inadequate.

I tried seeing a representative from HR but she merely sent me links to intranet sites and said something about my saying my health deteriorating to the point where i can no longer do my job properly!! That WASN’T what I’d said. What I’d ACTUALLY asked for was some recognition of the condition and appropriate SUPPORT and understanding!! There is a full page article in our staff mag about a transgender bloke getting support from the company to enable him to become a woman (in a very male dominated environment). No such support appears to exist for those with hypothyroidsm!! Its like having an ‘invisible’ disability. Even deaf people have an advantage as eventually people realise they are talking to a deaf person and adjust their behaviour appropriately. I on the other hand merely appear frazzled and stupid.

From Patient 001
I would say I was born with a low thyroid condition (thyroid problems are on both sides of the family) always tired as a child and adult etc. etc. always at the Drs for something or other going wrong that no-one knew what it was always put down to stress but things really went wrong in 1994 when some rather weird things started to happen my TMJ joint went into spasm at the dentist I was in agony for over three months before the dentist realised the jaw was the problem and not my teeth and I had to wear a splint to prop up the joint the agony I suffered was almost as bad as kidney pain I had experienced when I was younger. It got worse from there I was lying in bed one night on my side when I heard within my head a terrific bang I realised that something had gone in my shoulder joint I was referred to a specialist who said he had never seen anything like it the clavicular joint in my shoulder had parted and one bone had shunted on top of the other but oddly with no pain.

My eyesight started to fade and the back pain that had started some months before got so

From Patient L
For about 15 years I was jogging along happily with the thyroxine. I then decided to go on a very strict diet. Three years very strict, even Christmas and only lost two stone. Very slowly I started to feel tired and my legs, ankles, feet swelled, and other symptoms, which I did not recognise as hypothyroid as if I did have them before, I had forgotten. I dragged myself to accompany a friend who was going to see Dr.Skinner. I was in the room with her. Dr.Skinner looked at me and said he thought I was going to be the patient. I said I was already on thyroxine and he said that it looks as if I am undermedicated.

I went to my doctor who did the usual TSH and it was within range so he would not increase the thyroxine. I was getting worse and very noticeably so. He wouldn’t do anything about it so I started looking for groups on internet. I discovered that NPTech would do a full thyroid test, so had one done. I was appalled at the results. My T4 was the very bottom number in the range and my T3 was well below the range, indicating to me that there was a conversion problem.

Took the results back to GP. Looks at T3 results and says “we do not take any notice of T3” (which explains why the labs will not do it) but my dose of thyroxine was increased to 150mcgs a day. I improved for about 2-3 months and then wham, back to square one again with a vengeance.

I went back to my GP who told me there was nothing wrong with me, and I was obviously depressed so I should take Prozac. And, by the way, as my cholesterol was high I should be taking Statins as well. I refused both, which made him very angry, and after that all my woes, in his mind, could easily be fixed if I took Prozac and therefore it was my own fault if I felt ill.

In the end, after endless searching on the internet (unfortunately TPA has not yet been formed then) I found a private doctor who prescribed T3. I wanted to see Dr.Skinner originally but my GP blank refused to write a referral letter. However it turned out that this doctor actually had a surgery in my home town (as well as other places goes around the country like Dr.P).

I went to see him, he ordered more blood tests and a 24 hour urine test. The conclusion was that indeed I was not converting to T3. At the bottom of the urine test results there was a note to indicate various conditions that could cause this and one of them was malnutrition due to extreme dieting. Proof that I had not been cheating on my diet even though I could only lose less than a stone in one year.

Anyway Dr.D (private doctor) gave me a prescription for T3. I had to stop taking the thyroxine for four weeks, then 10mcg of the T3 in the morning, working up gradually until I was taking the amount of T3 that suited me and then slowly introducing thyroxine back, although not as much as the 150 I had been taking.

I started to feel well, but it took about a year before it was noticeable. Weight I think will always be a problem now because since I stopped strict diet I put on 4 stone and still have puffy ankles.

Dr. D reported periodically to my GP. GP was really angry with me going to see another doctor, and especially as he had prescribed T3. I was getting on fine with it which probably galled him even more, because then every time I went to see him, even if it was with a cut finger, he would blame it on the T3 (and possibly because I wouldn’t take prozac or statins).

I had cellulitis on my leg for three months, very painful, and he would not treat me saying the rememdy was in my own hands. My GP’s surgery is about the only one in the country where you have to stick to your own GP and cannot see another one, so I was in a very awkward situation. In the end I asked to be transferred to another doctor. I couldn’t choose which doctor so was stuck with the one given to me.

He too was not happy with me taking T3 but let me get on with it provided I don’t get him involved. However, he asked how many times do I see Dr.D. as he needed a report each time. I had to confess that as Dr.D no longer practiced here and that he just sent me the prescriptions, and that if I needed to speak to him I could have a telephone consultation. He was quite angry about this and said it was bad medical practice etc. As I did not want to put another good doctor in the position where he might be reported to GMC I decided I would no longer have any dealing with him.

By that time though I had joined TPA and learnt about Armour, and decided that if I was going to have to go the way of getting my own T3, I might as well go all the way and get Armour. I worked out the equivalent amount of Armour to what I had been taking in T4 and T3 and changed over without any problem.

The endocrinologist who I saw for my diabetes and also looked at my thyroid, was the worst. He refused to change my insulin regime which was causing me a problem, and went apopleptic about me taking T3. So much so that both the endo and GP missed seeing that fact that I was anaemic. They were both so clouded that my TSH was 0.01 they didn’t look at the rest of my blood test.

Oh and by the way, when I had NPtech test my thyroid I also asked for B12 to be tested and that was found to be low. When I showed GP I was given another test and told I had pernicious anaemia and needed B12 injections every three months.

Can you imagine what I would be like today if I had left my health care to my GP. I might not have even been around to write this.

Because I had my blood test results I saw that I was anaemic. Brought it to the GP’s attention. The endo in his letter to GP said that apart from my low TSH everything else was OK, which it was not. GP said that he would not have written about it as it is not in his field. I replied, then why does he have a full blood test done, and if he took no notice of it, why write that everything else was normal, when in fact it was not. But besides that, the GP himself had a copy of the test results and he too was so clouded with the fact my TSH was low he didn’t go any further.

Guilty consience I would say made him arrange to see why I was anaemic, rather than just give me iron pills. Actually if he had just offered iron pills I would have insisted he find out why.

So let’s see what I would have been like left to the doctors.

1. Polyp found in bowel whilst investigating anaemia. This would eventually have turned to cancer.
2. Anaemia not picked up on so my complaints of breathlessness, fatigue etc. I would have been told there is nothing wrong (as per usual) take prozac.
3. B12 deficiency would not have been picked up on. Nerve damage as a result, but this would probably have been blamed on the diabetes.
4. Goodness knows how I would be with just thyroxine. But had I taken prozac then how I feel could have been explained as side effects of prozac and perfectly normal.
5. Untreated cellulitis could turn ulcerative, as a diabetic might have had amputation. Doctor would say this happens to diabetics nothing to do with him not treating me of course, because he disagrees with the medication I am taking and that I should be taking what he recommends (prozac and statins).

I could go on, but you can see why I am not too happy with my NHS treatment.

From Patient BH
Last summer I was incredibly ill after my GP reduced by thyroxine dose by two thirds overnight (and over the phone!) and I literally had to beg for a referral to an endocrinologist who I hoped would sort me out (my begging for a referral was initially ignored and I was told it would get sorted “naturally in three to four months” (!) until I uttered that magical four-lettered word B.U.P.A )

At the time I mentioned to the endocrinologist about excrutiating leg pain which I suffer, particularly in the evening when I get tired, which has, in the past, reduced me to tears. He pooh-poohed the notion there could be anything connected to my hashimoto’s and signed me back to my GP with the diagnosis that my thyroid blip had been due to stress.

I am so annoyed as, having read up on fibromyalgia, it now sounds like the symptoms may be related to that, if/and not directly related to my thyroid issues.

It’s especially worrying as the doctor who ignored my pleas was meant to be a “good” endocrinologist.

I’m so thankful I found this group, and can’t thank Sheila, Lilian and the others enough for all their support.

Goodness knows where I’d be without it!

From Patient S
I have my own house, a loving partner, many friends and up until about 6 years ago I was hardly ever ill or under the weather in fact life was good.

Somehow though over the last 5-6 years I have felt my health decline, I started to feel tired all the time, feel terribly, terribly cold, I felt depressed all the time, my speech felt slow, I had frequent urine infections, I had very bad constipation, dry skin and hair etc, etc, I had no interest in anything, everything was just such an effort.

I decided to go and see my doctor to see if she could tell me why I should be feeling like this, she suggested that I have some blood tests done to check my general health but she felt that it was probably due to my age and my disability. The tests all came back normal, so I went away and decided to try and give myself a boost with some extra vitamins and minerals.

As time went on I felt that I was getting worse, I kept looking up my symptoms on the internet and under-active thyroid would come up so I went to see my doctor again. She listened to all my symptoms and agreed that they were the same as those for an under-active thyroid and agreed for me to have a blood test, these came back as being within the normal range. She added that she thought I was suffering from depression and offered me anti-depressants, I declined.

Over the next couple of years I started to have further problems, blurry vision, terrible brain fog, poor memory, sleep apnoea etc. All my doctor kept saying was that I was probably now going through the menopause and this was what was slowing my body down, again she suggested anti-depressants and this time I accepted the offer.

I tried the Prozac for 6 months hoping desperately that they would help but I felt no better so I stopped taking them. Life was just a misery, what was the point of living anymore.

Then last year I found your website and again started to think that I could have an under-active thyroid. Having realised that conventional blood tests aren’t always the best indicator I decided to pay for private saliva tests to see if they would show up anything different. At the same time I contacted Dr Peatfield at his Crawley office to see about making an appointment to meet with him. Sadly I was unable to meet with him as his Crawley office is not wheelchair accessible but he suggested that I send him copies of any tests that I had and he would look over them to see what he thought. I sent him copies of my last blood test from my G.P. and the saliva tests from The Red Apple Clinic. He wrote to me about a week later and told me that I had low adrenals and an under-active thyroid. He then suggested that I take Nutri-adrenal extra and that I should have a trial of Armour to see how I felt on it.

I decided to follow his suggestions and took the Nutri-adrenal extra for a month before starting on a 1/4 grain of Armour. I now buy Armour privately from the U.S.A. and over the last 6 months I have gradually increased my dose and I am now currently on 2 and a half grains a day. So far I have seen a slight improvement in myself though I still feel that I have a way to go. So there you are, that’s me!

I feel all very new to this and I am rather nervous about self prescribing so it is great to have contact with others who are doing the same. I am still very unsure of many things such as should I be retested now for my thyroid & adrenal levels or should I wait until I have upped the Armour some more? If now then what tests should I have done, which is best saliva or 24 hour urine? Also where is the best place to buy Armour from? Plus many more questions that I can’t think of at this point of time! Hopefully this will all become clearer in time.

From Patient 002
I have been visiting my doctor for over 10 years with classic thyroid symptoms and signs. All I have been offered are HRT and SSRIs and also told “it’s your age dear” as the thyroid blood tests have come back as ‘normal’. I am now 60 years old I paid to get advice from a prominent metabolic specialist who diagnosed Hypothyroidism. I also paid for a thyroid test namely a 24hr thyroid urine test which shows the thyroid hormones in the tissues. The result of this test showed that my T3 was way under range. I also paid for an adrenal stress test which the NHS does not do.

I went to my doctor again he did not know how to interpret the 24hr test and still stated that it was my age and menopausal problems.

Before Christmas I managed to get a referral to the hospital and an endocrinologist. He said that my tests were ‘normal’. He did not do any physical tests such as the Achilles Heel reflex he did not take into account my signs and symptoms or the results of the adrenal test and he totally ignored the 24hr thyroid test I had done – which showed that I had a conversion problem!!!! He had the cheek to suggest I consider HRT despite saying that my estrogen was normal and knowing that I am using Natural Progesterone cream which I am also having to buy privately. He has discharged me.

I have sent him letters asking him to explain why he ignored the 24hr test and why he ignored my signs and symptoms and failed to do physical tests such as the Achilles heel test. The only reply I have had from him did not go anywhere near explaining why he ignored the 24hr test and why he discharged me.

The NHS protocol on treating thyroid problems is deplorable. The diagnosis protocol is beyond deplorable. The medication given by the NHS is inadequate because it does not take into account natural Armour Thyroid which has been used for decades and only prescribes synthetic which some people cannot tolerate. The NHS is diagnosing thyroid problems using only blood tests and medicating on the say-so of the pharmaceutical companies who seem to be calling the medication shots.

Why do thyroid sufferers have to live in misery being mis-diagnosed and un-diagnosed. They are having to pay out an enormous amount of money to self-treat by going privately to see doctors who are well versed in the myriad of thyroid symptoms, new ways of diagnosing and are open minded to the patients physical, and mental symptoms and signs and not totally reliant on TSH blood tests.

Please can the NHS treat hypothyroidism as a human complaint not a laboratory blood test result. We need more open minded, educated NHS doctors and endos also what we do not need is the suspending of caring doctors who veer away from the straightjacket of NHS diagnosis and treatment.

Please can people who have thyroid complaints be treated humanely after all, we are in the 21st century.

From Patient P
I was given t4 only about 5yrs ago and things did get slightly better. I know that I am still hypo, my body is still cold. My basal temp at its highest is 35.8. The docs say I am in the normal range. I have been diagnosed with CFS but I keep trying to tell them it my thyriod. I take 137mg of levothyroxine. I feel slow, my house is a tip, i sleep lots, i have put on two stone, I live in a fog. I feel desperate to get my lfe back. But I barely have enough energy to assert myself with the docs. I have sent my first letter to docs last week asking for amour.I would love to get my life back and reclaim my health.

From Patient GI
Since then I was first diagnosed with depression and now bipolar disorder. I have never felt completely well since the thyroidectomy and requested a referral to an endo a few years back to ask about T3. All he could say was that I wasnt taking my medication and they didnt test for T3. I have always taken my medication!

Now with the treatment for bipolar, I have been prescribed carbamazepine which affects the thyroxine. I was feeling very tired, sleeping all the time, brain fog, dry skin etc and with the blood test, my levels were wrong. Im now on my 3rd week of an increase in thyroxine to 200mcgs. Im slowly feeling slightly better, well, Im not sleeping all the time! My GP stated that he can keep upping the thyroxine if needed.

Im not happy about T3 being ignored so Im following this group to see if theres a way I can convince my GP to test.

From Patient MM
Had been attending gym for 10 months not lost a pound in weight even though walking extra 10 miles a week in addition to exercise. GP most unsympathetic, said I was probably depressed because I told her I was tearful all the time, it was my insistence that I have thyroid test because I have two sisters and two nieces on thyroxine, a sister and niece who are borderlinethe GP said, “So you want to join the club then do you?” Won’t tell you what I wanted to do to her but she let me have test and sure enough it came back that I have UA Thyroid. Thing is I feel worse on the tablet than I did before, and wonder whyis it psychological?

From Patient A
The problem I have is that a lot of my symptoms match with those of thyroid problems, also Hypothyroidism runs in my family. I’m so desperate to sort my health out that I won’t believe it’s ‘all in my head’ as my doctor puts it until I’ve searched every avenue. They have passed my on to a psychologist at the moment and I am so low as I feel like they’ve now written me off and I have no hope of finding the answers.

A question I would like to know is whether people have symptoms that come and go. I had a flare up with all of my symptoms last year which lasted for about six months. I then got better, I had the occasional symptoms but nothing compared to previously. Then in July last year it all happened again, I start to get tingling arms and legs and then everything goes down hill from there. My body seems to loose all ability to temperature control, I’m either too hot or too cold, my memory is non existent, I loose the ability to think, I suffer from insomnia, anxiety, thirsty all the time especially at night, urgency incontinence, I’m completely exhausted all the time, with no energy or inclination to do anything, I suffer from severe muscle pains to the point it is difficult for me to actually physically move sometimes. My stomach has been terrible, really bad constipation, stomach cramps and pains under my ribs. Before the first flare, I had my gallbladder out, could this be connected? Any advice or help would be very very gratefully received.

From Patient B2
Thank you so much for your kind welcome and reply. Reading a number of the posts on here has made me realise that I am not the only one!!

I think I am going to pay and get all the blood tests done and then go from there. I just pray something shows up because living like this for the rest of my life is an unbearable thought.

You have given me renewed hope, as I had just about given up. I’m just too exhausted to argue with them any more. The other little gem my GP came out when I had just started to tell him my symptoms was that medical science can’t solve everything. I have lost all faith in doctors. You get treated so badly. I can’t believe that the medical profession are happy to leave people like us suffering for so long and can’t even be bothered to be nice about it. The last doctor I saw was marginally better, but she still came out with “I think you have psychological issues”. That’s when you know they can’t think of what else to do with you.

From Patient M
G has been ill since April 2006 started with an ear infection which he caught whilst working at a nursing home developed into a chronic ear infection as after umpteen treatments it is still affecting him.

He got gradually worse and he became exhausted collapsing at work and blacking out at home. december 2006 he passed out for a good 10 minutes whilst he fed our eldest 2. this prompted me to get him to doctors again where they thought he had epilepsy/brain tumours etc and told him he would have a 12 month wait to see any nuerologists. In the meantime he had lost 2 jobs because of this

february 2007 we were fed up and couldn’t wait that long to find out if it was a tumour so my parents paid for us to see a bupa nuerologist

he checked him over (no proper tests) and diagnosed CFS/ME in april 2007

he was really ill and lost a total of 3 jobs due to passing out we had no money coming in so he applied for over 70 jobs no one wanted to hire him so we gave up and he applied for incapacity benefit in july 2007

he is constantly dizzy and exhausted and we dont have the lives we used to he cant play with his daughters for 5 minutes without passing out

he has now developed really bad headaches ie yesterday he couldn’t get out of bed had sharp headache and bad dizziness so bad he had to clutch his head. I have come into living room before to him lying on floor holding his head

we are worried it might be something else but the doctors aren’t interested. someone mentioned to me about hypotyroid? but how do we approach this with doctors who aren’t bothered?

to add to all this they have stopped his incapacity benefit cause he didn’t score enough points on the medical currently appealing

his doctor also put him on anti depressents – no idea why cause he aint depressed.

not sure if this is linked or not but since age of 2 gary’s hands have shaked it gets bad sometimes that he avoids certain tasks

From Patient 003
Before my hysterectomy I worked part-time, at Safeways was a member of Surestart on the steering group, worked with Childrens Fund doing community consultation looked after my 5 children and also completed a college course. This was normal for me to all these things; I always had an endless supply of energy. The only thing I saw my G.P about was my ante-natal appointments and then about my periods becoming heavier. I had a large fibroid which had been diagnosed when I was 26, but it didnt really cause me too many problems and I ignored all efforts to get me to have a hysterectomy because of it.

Then in May 2002 whilst on a training course in London, I began to bleed profusely, I felt faint and dizzy and decided enough was enough and agreed to the hysterectomy, which I had in July 2002. Even though I had an abdominal incision, I had no post op pain relief apart from Voltorol. I was fully mobile the next day and just 4 days later was able to walk from St Thomass Hospital to Waterloo train station, and caught the train back home to Folkestone. I felt fit and well with no complications apart from a urinary tract infection due to being catheterized. Just 20 days later I started my current job.

In Nov 2002 I had what I thought was a viral infection, and took a couple of Ibruprofen pills to ease the symptoms. I began to swell and was admitted to hospital for treatment; it appeared that I had developed an allergy to the drug. I have never suffered from any kind of allergy or sensitivity before. Then gradually I began to notice that if I ate certain types of food, especially those containing Soya, I would have symptoms that resembled arthritis. My diet then became one that consisted of mainly fruit and vegetables. So many processed foods have soya in them.

I began to feel tired a lot of the time, but assumed it was an age thing!! My house became untidier and I began to lose items. I was becoming depressed and so frustrated at all of this. My college work began to slip and I had no concentration.

I had started to withdraw socially from family and friends, just thinking about getting ready to attend an event would fill me with dread. This began to cause family arguments as my husbands family believed that I was snubbing them. I wasnt, just felt too tired to be sociable. In the end I just stopped going. My Partner and I began to argue most of the time and I started to hate him. I believed I was the only one doing the housework and nobody else was helping.

I started to go to bed at 8.30pm and even 12 hours of sleep would not be sufficient. I would always be late in the mornings and it felt like I was on slow motion whilst the clock was on double speed. Getting my children to school on time and with their equipment became a real challenge. The receptionist at the school would roll her eyes at me, and comment late again Mrs. Tanner I felt like I had become the problem family. I started to get the bus instead of walking to try to gain some time, but would very often miss it due to my lack of energy. The fatigue plus joint and muscles pains became worse by now, even though I was totally avoiding soya products and catching the bus.

I began to believe my partner was poisoning me, I started to prepare my own food and drinks and developed a suspicion that he was tampering with my coffee. I kept my jar of coffee in my handbag and never let it out of my sight, it put a real strain on the relationship. Mislaying items was becoming a real problem; I began to accuse everyone in the house of trying to make me think I was going mad. I was getting more and more verbally aggressive to my family. The mood swings were horrendous, I was aware of them but felt powerless to stop them. I began to shut myself away in the bedroom just sleeping and listening to music on my Mp3 player as that way I didnt have to make conversation with anyone and risk an argument. I had forgotten birthdays, anniversaries etc by this time too which caused tension and arguments. I was past caring about anyone else by this stage though and felt no remorse for anything I said or did it was like I had no emotions left.

July 2004 I moved out of the family home, taking my youngest 3 children with me, I just couldnt take anymore, and felt suicidal, moving out was my only option. It destroyed my relationship with my eldest 2 children in the process though. I seemed fine for a while and put the tiredness down to being a single parent of 3 kids and working full time. I now had the luxury of going to bed at 7pm, it was also nearer to school and work but still I was always late. Oct 2004 I had a small bowel obstruction; it became necrotic and had to be resected, I also had peritonitis. The fatigue got worse over the next few months, my head, arms and legs ached constantly and my sinuses always felt inflamed. I contacted my landlord and got him to organise an inspection of my gas central heating system as I thought that I had carbon monoxide poisoning. This came back clear, yet I still felt unwell. It was like having flu all the time; I was always freezing cold too sometimes I would shake uncontrollably and only a hot bath would stop it. My skin appeared waxy and smooth, the tops of my legs felt spongy, but didnt pit when pressed. I assumed I was still recovering from the surgery and convinced myself that I would feel better soon.

I began to forget things I was supposed to do, even ordering a MacDonalds for the 3 kids was like trying to remember the order for 100 people. I became very confused when it came to form filling, or trying to learn a new task at work, so I stopped trying to do these things. I would get money from the cash-point and walk away leaving it at the machine, or buy something in a shop and walk away without the item or the change. I began to think that I had Alzheimers or possibly CJD by now.

I decided to take the kids on one last holiday, then I would go to the doctors and find out what was wrong. I was convinced I was about to die and wanted them to have at least one good memory of me. I made every effort and hid the pain I was experiencing to give them a great time, even going on the big rides at the funfair. I came back from holiday and felt so very ill, my face fingers and stomach had ballooned, I couldnt do up the buttons on my clothes and looked like the elephant woman. My GP took my BP and it was very high so he sent me to my local hospital. I was there for 4 days; no one could decide what was wrong with me. The medical team kept passing me back to the surgical team and vice versa. A scan revealed my liver was enlarged but was functioning and also I had developed ovarian cysts.

My blood test results showed I had a thyroid problem!! I didnt know if I was under or over active, the nurse wasnt sure which it was either. I was just given 100mcg of levothyroxine a prescription for 5 days supply and a note for my GP then discharged. I had no information leaflet or booklet; I was scared and went to my then ex-partners home to stay until I felt better. I was worried that I couldnt care for the kids safely. I went to bed at 9pm but woke an hour later with crushing pains across my chest, I couldnt breathe or speak, and my head was spinning. My partner called an ambulance and the paramedics ran an ECG on me in the vehicle. All was fine, normal heart rate, BP and O2 levels were 99% they suggested that perhaps my levothyroxine was a little high for a starting dose and not to take anymore until I had sought medical advice. The SEDOC called me to see if I was ok, and chatted to me for a while. I went to see my GP who reduced my dose to 50mcg, he was also concerned about the bruising I had sustained during my blood tests, a massive deep purple mark had formed right across my elbow crease it was also very painful to touch.

Even on 50mcg I didnt feel any better, I felt breathless and dizzy, and every time I tried to increase the dose the symptoms got worse. I had to give up my flat as I really couldnt care for my kids and moved back home with my ex partner. My speech was slow and deliberate and I would forget what I wanted to say mid sentence; I was asked a few times if I had been drinking, but I hadnt. I passed out a few times, my chest used to hurt. I passed out in Debenhams and was taken to the walk in centre. They tested my blood sugar levels, it was 3.3. I had eaten porridge at 7 am and I passed out at 10 am. I had a meal at the hospital canteen and had an appointment with my practice nurse at 4pm. At 4pm my blood sugar was 7.7. I became too scared to be out alone after that episode just in case it happened again and started to suffer what I now realise were panic attacks.

The spongy skin spread to my arms and legs and my eyelids became puffy. My hair began to fall out by the handful and I had 3 large bald patches. I also gained 30lb in 7 weeks of taking the levothyroxine. My TSH was coming down but my symptoms were getting worse and it seemed like I was seeing Dr every week by now with a new ailment. I knew I was becoming a pest, but felt so ill and just wanted to feel well again. I had a lung function test which I failed; I was prescribed a steroid inhaler for asthma. I used it a few times but it burned my mouth so stopped it. I kept on increasing my dose until I was on 125mcg. The breathlessness began to ease on its own as my TSH came down but the depression and feeling flu like feelings got worse. Walking had become very painful, my arms felt so weak even eating a meal would tire me out. I started my own research into Hypothyroidism and found out about Armour. I wanted to give it a try; it couldnt make me feel worse than I already did but was disappointed to discover that it wasnt available in England.

Thoughts of staying this ill forever filled me with dread, it wasnt a case of if I would commit suicide, it was more of a case of when now!!! I was failing at home and work. I was still too tired and aching to do anything with my kids. I was fat and bloated and so very sick I had no motivation for anything; I just wanted to go to bed and stay there. A blood test revealed an elevated CEA level ( carcino embryonic antigens) and deep down I was hoping I had something terminal, as it would save me the bother of killing myself wouldnt it?

My research showed that there was a strong link between thyroid disorders and type 2 diabetes. I have a very strong family history of this, and had gestational diabetes with my last pregnancy. My mum dies of diabetes complications and my sister who had always had a weight problem died of pancreatic and liver cancer. With this in my mind,I decided to ask to see an endocrinologist in a last ditch attempt at getting some answers/ results and my Dr referred me, I think just to get me out of his hair and shut me up. I had taken the decision to stop levothyroxine, whether I got the chance to try Armour or not. I couldnt go on like this and wanted it all to stop. I was prepared to let nature take its course and die. I felt far worse on levothyroxine than I did before I took it. The appointment was amazing; I really didnt take in what he said about anything else, only that he was prepared to give me a try on Armour. I could have kissed him. The wait until it was all set up was nail-biting to say the least. This was my only hope of getting my life back.

Since being on Armour, my life has changed so much. I am back to walking the 2 miles to school and work and doing things with my kids like going to the beach and rock pooling for shrimps and crabs, I have even started to make cakes again. At work I am back to functioning on all cylinders, luckily I have a boss with an auto immune disorder who understood what I was going through and supported me through it all, even attending Drs appointments with me. The weight loss hasnt been dramatic but very noticeable to me and others I am still more like a beach ball than a beach babe but I feel good about myself once again.

My 11yr old son commented its good to have my mum back We are no longer the problem family at the school; we get there on time and fully equipped. I have started to enjoy my garden again too and have grown some flowers this summer. The confusion has disappeared and I know my sharp wit has returned to its former glory. During this hot spell, I was quite proud of my wet armpits, much to the amusement of my family and friends, I knew it meant that I was finally getting well again though. The palpitations at night are now just a distant memory and I wake up feeling like I have actually been to sleep. I have managed to build bridges with my adult daughter, things are still strained though. I am afraid that this will never happen with my adult son. He has said he never wants anything to do with me again, and I cant say I blame him. I put my family through hell.

One day both the general public and Drs will truly understand the effect a thyroid disorder has on all aspects of your life. Most seem to think that it just makes you fat, or thin in the case of hyper they dont realise the far reaching effects on everything around you. People need to be aware of the symptoms, and feel confident in going to see their Drs with them. Drs need to open their ears and minds to what their patients are telling them instead of listening to the drug companies and be confident in their skills in making the right diagnosis and healing thyroid patients with the right thyroid replacement therapy. I know Armour isnt for everyone but this is about having the right of choice, just like the Patients Charter says we should!!

I just assumed it was just my age and should have gone to the Drs sooner, but I was scared of being told it was all in my head! Looking back now I truly believe I had what they refer to as thyroid madness. I recently got a copy of the letter my endo sent to my GP and found out that my TSH was immeasurably high and my T4 was immeasurably low when I was admitted to hospital last year. It would seem that I was well on my way to myexedema coma and nobody would have realised it as there is no family history of thyroid problems. I didnt know how ill I had become until I got well again. My last TSH was 0.4, so it looks like its suppressed and I will probably be told I have to come off Armour, but I wont ever take levothyroxine again, I have promised myself that much.

We need a Government education programme like the ones they do for diabetes, thyroid disorders are just as life threatening but unfortunately no one seems to take it that seriously.

I want to say a big thank you to everyone on the TPA board. If it wasnt for you then I would have probably killed myself by now. The information I got from the site enabled me to take control of my health, both physically and mentally. Armour has given me my life back

From Patient 004
The GP said it was a virus and that it would pass and sent me on my way.

In October of that year I started to have a very erratic heartbeat, to the point that I actually fainted on a couple of occasions. The second time I was really alarmed so I went to the local A&E. They did tests and discovered I had an elevated TSH. I was started on 50mcg of thyroxine immediately and a letter was sent to my doctor.

Over the following months, and years, my dose was steadily increased until today I am on 150mcg.

Nevertheless, the symptoms didn’t go away. They actually worsened. The pains spread all over my body (I’ve described it as feeling as though my blood was toxic sounds dramatic but that’s the best description I can give). The occasional periods of exhaustion became a regular occurrence, with times of bone crushing tiredness and whole body weaknessunable to lift a cup or get my head off the pillow in the morning. (To which one doctor said “we all get mornings where we don’t feel like getting up”). I developed “brain fog” to the point where I constantly lost my way in mid-sentence or forgot the names of friends and colleagues.

My weight began to fluctuate, so that I now have clothes in three different sizes. I began waking through the night, despite being exhausted. My eyes became dry and watery and “puffy” much of the time. Then I started to lose my eyelashes. My skin became dry and itchy, at first just my hands, but later all over my legs and back too. I developed strange orange patches in the creases of my skin. My periods stopped. My hair grew thin and lifeless. I was too exhausted and weak to have time for family or friends and without a diagnosis my job, which I loved, was increasingly at risk.

I saw various GPs over this time it’s a multi GP practice who couldn’t really suggest anything apart from asking “whether I was depressed?” Of course I was! Wouldn’t anyone be fed up if they constantly felt so ill.

From my point of view, dismissing me, and my symptoms, as being some menopausal, neurotic episode did nothing to help find the problem. Increasingly it looked like an easy get out.

Finally, one of the GPs referred me to a general consultant. He arranged for me to have a fine needle aspiration test. However, when I got there the doctor took one look at the ultra-sound image of my thyroid and said there was no point in proceeding as my thyroid had wasted away to the point where it looked like “a lump of wood” and had ceased functioning.

On returning to the consultant (with my husband in support because by that point I was incapable of taking much in) he told me that I had Hashimoto’s, probably as a consequence of an auto-immune response to the virus I’d contracted in 2004. He concluded by saying, “Don’t take this as a diagnosis butthere’s also the possibility that something could be going on with your adrenals.” I asked him how that could be treated. He said it couldn’t. He referred me to a rheumatologist for the pain and prescribed progesterone.

By this point I was becoming increasingly disillusioned and started to realise that I was going to have to start helping myself as clearly the medical profession wasn’t going to.

Thankfully, in so many ways, I found the TPA website. As I read the pages, I actually cried. For the first time I realised I wasn’t alone. I digested every word, read references and files and joined the forum. At last I felt I had the means to get better and get my life back and I made a conscious decision to do everything I could to recover.with or without the help of the medical profession.

One evening, however, I was even more poorly than usual. My husband found me curled up on the bed. The pain was mind numbing and the terrible tiredness left me too weak to even lift my head. He immediately phoned the GP who arranged for me to go into the surgery the following morning.

Ever the optimist, I managed to make it to the surgery, where the doctor commented that “until the thyroid problem had started, they hadn’t really seen much of me at the surgery.” She then announced that I now had CFS. I asked how depression or CFS could be causing my skin problems. She said they were unrelated and prescribed cortisone cream. I asked her how it could account for my dry, puffy eyelids. She told me that was also unrelated. I asked her about the pains. She said I was going to see a rheumatologist. She told me that the only way to deal with my exhaustion was to “work through. Then she prescribed anti-depressants.

When I got home I shredded the prescription.

Two weeks ago, I stopped the levothyroxine and started taking NAE to boost my adrenals. Last weekend, I had three of my grandchildren to stay over, attended a 40th birthday party until late at night. My periods returned. I cut the grass. I’m sleeping through the night and waking refreshed in the morning. I’m working, and delivering, at almost the level I was before this nightmare started. I’ve just come back from a very pleasant bike ride. Even though I still have the pains and occasional tired spells, I’m getting me back.

I’ve just sent off for a supply of Armour thyroid and once I’ve given my adrenals the chance to recover I will self-medicate with that. I’ve found it quite scary to turn away from a medical profession in whom I’ve always placed my trust, but now I feel that I will get better despite the current medical protocol and not because of it.

I will tell my GP exactly what I’m doing, and I hope she will support me. I am not prepared to give up on life and simply fade away as I fear so many other sufferers must be doing on NHS treatment.

From Patient 005
I think it expresses the problems I have suffered as a result of apathetic doctors. I (as you may already know) have seen so many doctors about my fatigue problem that I have lost count. You may also say that I have lost all faith in NHS doctors and am self medicating as there was no other way I could go. The doctors had more or less told me there was nothing wrong with me when I know damn well there is! I didn’t make it up. One lady GP I saw told me I was probably constantly exhausted as a result of too much investigating what could be wrong with me!!! I felt like throttling her.
Anyway, feel free to use any of this email for your cause.

Dear Professor W,

I am writing to you again about the ongoing problem with fatigue I have experienced since 1997.

The last time I wrote to you, you suggested that I try taking DHEA tablets, this I did and they were supplied by DHEA.com as you recommended. I am still suffering with this problem and it has contributed greatly in my marriage breaking down. My wife has filed for divorce and I have to find myself a new home without my children. I can accept the fact that my wife found me difficult owing to mood swings, total lack of libido etc. What I cant accept is being told there is nothing that can be done for me. My GP tells me that everything will get better once I am settled down in a new home, fine but it should never have come to that and it was still bothering me before my marriage breakdown.

I have been complaining of this condition for around 7/8 years and I have been referred to a fatigue specialist who informs me that I have Chronic Fatigue Syndrome, well having looked up this condition on the internet it wouldnt appear to tally with the symptoms I experience and I just cannot accept that this is what the problem is. I dont get palpitations, I dont have painful glands in the neck or armpit, I only feel sick when the Crohns is active, and I dont have flu like symptoms.

As I have previously mentioned, I have been on Prednisolone in varying doses since 1995, this was originally for the control of my Crohns Disease but I have found that I cant get off them completely, I am on 5mg now and I dare not lower any more as I could not stand the increased fatigue as well as what I have now.

I was visited by one of the CFS specialists at home last year and she mentioned that my Adrenal/Pituatary axis may be shot. Is this the case and is this what is causing the fatigue? I cannot recall any tests being done for this, they may have been done but I cannot recall it.

I have joined various forums on the internet including the Thyroid Patient Advocacy and these have proved to be helpful.

I am sorry to be bothering you with this problem but, as you can probably tell I am at the end of my tether with the ongoing fatigue. All I want to do is to try and rebuild my life in order that I can go back to work and find a home that has enough room for my children to stay with me. This really is my last attempt to try and get to the bottom of the problem and this is why I have written directly to you.

I hope you will be understanding.

Message

I hope you dont mind me contacting you again but it is just to say that I went to my doctor on Monday (27th Jan) and he was not too pleased with me. I had showed him the email you sent and he responded by telling me that the endocronologist I had seen around 9 months ago (Professor W of the J R Hospital) was convinced my Thyroid was normal and that he would have done more tests if he suspected anything amis. I can’t actually remember Professor W doing tests on my thyroid but the result of the last test I has showed the TSH to be 1.04 and my GP assured me that it was ok.I don’t know what to think now maybe, if you dont mind, I could let you know my history concerning the fatigue.

Firstly I am male, 53 years old and have Crohn’s disease, type 1 Diabetes and Restless Legs Syndrome. I have been taking Prednisolone now since 1995 without a break.

In 1997 following 2 years of major problems with Crohn’s I had major surgery to remove a stricture in my bowel. For a couple of days following the surgery I felt comparatvely well then, all of a sudden (literaly) I started to feel unwell again. I put this down to the op. and thought it would pass but it didn’t, after 4 years complaining of extreme pain and fatigue I was readmitted to hospital and operated on again as it was thought that the Crohn’s had flared up again. It turned out that I had an adhesion, not a Crohn’s flare up, this was dealt with but, while in hospital, I couldn’t stop being sick and was told that I would not be allowed home until the sickness subsided, needless to say, it didn’t. I was treated very badly by one particular doctor who, when I complained that I felt lousy, told me there were people in there with ‘real’ complaints (the chap in the opposite bed had cancer I apologised for not having cancer myself!), also I asked for my morphine drip to be removed before I got hooked on it, after a day and a half I removed it myself due to lack of response. The sickness was so bad I couldn’t keep anything down and was told that I could not go home until it was under control. One night after being given an ‘Ensure’ drink I was sick all over the toilet, I was so worried about anyone finding out and not allowing me home that I cleaned it all up using 3 rolls of toilet paper! I eventually discharged myself because I knew I would never get better there.

When home, the sickness subsided and I eventually regained my appetite but it was either then, or just after the first op (I can’t really say because of the flareup’s etc.) that I noticed I wasn’t regaining my former strength and energy (it was following the first op I started getting RLS) and I have been like that ever since.I have tried every avenue including low testosterone, chronic fatigue syndrome, prednisolone withdrawal and of course low thyroid. All I know is that I am running at about 25% of my former self and I am really fed up with it. At the present time I am also being treated for depression which has come about as a result of my impending divorce (the thought of being away from my children makes me very down) along with difficulty in finding accommodation and not being able to work. This is having a very bad effect on me and I know it will contribute to my symptoms but, the same symptoms were there when none of this was happening. My GP keeps telling me that once I am in a more settled situation the symptoms will subside but, as I said previously, I had the same symptoms when I wasn’t depressed. I am sure the fact I have never been able to get off the Prednisolone has something to do with it but I am told by my GP that it shouldn’t have an effect.

One very strange thing happened in 1999 and lasted for about 6 months. I lost control of my speech. What would happen was that I would have real difficulty getting words out and would stutter like crazy, I also mentioned this to my GP and to my Crohn’s specialist who did a small test for a stroke, this showed nothing and the problem eventually went away but nothing like that had ever happened to me.

Sorry, I have gone on a bit and I do hope I am not taking up too much of your time.

From Patient AC
I am 55 years old, had a hysterectomy 7 years ago due to multiple abnormalities and cysts in my ovaries. Prior to that was healthy reasonably fit and sporty, apart from the pain which went with the problem and I learnt to live with. My mother, maternal grandmother and great grandmother were all hypothryoid, and in all cases had to start treatment (with thyroxine mainly) after they gave birth.

Because of this family history my thyroid has been checked constantly but since my surgically induced menopause, my “symptoms” keep multiplyingI have loss of hair on the scalp, puffy face and eyes, dry skin which seems to be thickening sometimes with hives, am exceptionally tired all the time, sleep badly, constipation, gaining weight rapidly despite working out and running (gently) daily, and following a GI diet on the instruction of my endocrinolgist, get depressed and lose concentration easily and am always cold even when the temperature is 25 degrees and especially in the mornings, have muscle aches, pins and needles.

My last blood work up (last week) was Total Thyroxine (T4) 101 nmo (range 59-154) TSH 1.84 miU- range (0.27-4.20) Free T3 5.1 pmo My thryroglobulin antibody was

Apparently according to the GP and my endocrinologist, these are normal results and there is nothing wrong with my thryoid and all my symptoms are because I am 55 and to be expected. I have pages of other blood tests which say very little to me.

I think from reading the posts I need to find a doctor who will review my symptoms along with my tests, and shed a clue as to what is going on with me. I know that I cannot expect to feel the way I did in my 40’s but refuse to be written off just yet as a menopausal hypochondriac! My family are convinced (as is my gynaecologist- now I am starting to sound like a hypochondriac) that I am in need of some thyroid hormone treatment. Thank you for listening to the ramblings of a (physically)55 year old who still thinks she can be a 25 year old in spirit at least

From Patient CFS/ME
My private health insurer refused to pay out saying that I was not covered for a “chronic” illness. ( Despite the fact that I paid them 45 a month for more than 25 years). I was unable to work and had to fight being given an ill-health dismissal after 35 years of service with the same company, as a Senior Manager.

Eventually, after a 2 year battle and a lot of heartache, I left my beloved career with a redundancy payment and took an early pension. It was my Specialist’s opinion that my condition was so serious that I could only hope for a partial recovery and would not be able to undertake any form of work again. However, my G.P. and a Consultant Occupational Health Physician refused to support her opinion and undermined her because she was not qualified as an M.D. On the back of this, I was refused an enhanced Ill Health Pension because I could not prove that my illness would last until 65. An HR Manager told me “it would be easier if you were a terminally ill person, then we would be certain that you would not recover before 65”.

At every stage I had to fight a battle to be recognised and taken seriously. I had great difficulty getting Incapacity benefit and a “Blue Badge”. There are countless tales of distressing experiences with Doctors, Occupational Health Specialists, Psychologists, Physiotherapists, Human Resources and the prejudice I’ve experienced (even from my best friends) because I “don’t look ill” and “you’ve been ill long enoughit’s time you started to get better”. My intelligence has been insulted on countless occasions and I’ve been told that my “erroneous beliefs” about the illness were preventing me getting better. On top of this I’ve had to cope with the stress of litigation, the
unprofessional conduct of a Solicitor and bereavements.

On the positive side my Personal Health Insurer, Friends Provident, were brilliant and supported me in lots of other ways as well as financially. I researched the illness extensively with the use of info from AFME, the internet and accredited medical publications. I changed my GP and had very good help on the NHS from the “Outreach” CFS/M.E. clinic of Frenchay Hospital under the leadership of Dr. Hazel O’Dowd. I also found a leading Endocrinologist specialising in Adrenal Fatigue and CFIDS and went out to Turkey to consult with him. There I saw 5 professors and 10 doctors in different disciplines with expertise in aspects of the illness, all under one roof!! The visit was fabulous and boosted me so much psychologically because I was treated with real care for the individual and as an intelligent and knowledgeable woman.

Professor K said that I knew more about the illness than his doctors and should consider myself as my “own best doctor.”

They confirmed that my new lifestyle had been key to my improvement and my optimism increased because I could see how far I’ve come since I was first ill.

From Patient JP
I’ve just had 8 days in hospital. I was totally incapacitatedcouldn’t even lift my leg over the side of the bed and called out the emergency doctor who had me admitted (that was admitted, not committed though I do think that might be next!!!!) The first endo consultant I saw said he thought it was underactive thyroid because of all my symptomsbut guess whatmy blood tests came back as normal!!! Would he tell me what the figures were? NO.

Would he consider that perhaps the test wasn’t 100% accurate? NO. I had abdominal scans, throat scans, heart monitoring, chest xrays, blood tests for ‘everything’ (their word), an examination by a neurologist, a camera up my nose and down my throat by an ENT consultant and an hour with a psychiatrist. It appears I have some problems with my vocal cords (hoarseness) and now have an outpatient appointment with ENT and probably speech therapy. I also have carpal tunnel syndrome. I was also diagnosed as depressed but as a symptom of what is wrong rather than the cause. I’ve to have further neurological ‘tests’ as an outpatient but basically I am now home, still unable to walk, hoarse voice, falling hair, blurry vision, weight gain etc etc. I’ve been prescribed different antidepressants (effexor) and something for my stomach (?) as well as some painkillers for my headaches and painful hands. The best diagnosis I could get was chronic fatigue syndrome though they aren’t positive it is that because I had no viral illness recently and haven’t been flat on my back for long enough!!!

I’ve to get some support from ‘care in the community’ staff (probably a zimmer frame and help to get my shopping)because I am incapacitated, but that’s it – otherwise I need to ‘wait to get better’ or ‘adjust to my new circumstances’. I think I need to sort this myself. I have had no hypothyroid diagnosis but am still convinced the problem lies in that area but am getting a resounding no way from the NHS because my blood test is normal (though I haven’t seen the results). I can’t wait any longer. What will I do? How do I go about getting myself sorted? I have very limited funds but will find whatever is needed to get some help.

I just don’t know what to do or where to start. Oh please help.

From Patient P
I was given t4 only about 5yrs ago and things did get slightly better. I know that I am still hypo, my body is still cold. My basal temp at its highest is 35.8. The docs say I am in the normal range. I have been diagnosed with CFS but I keep trying to tell them it my thyriod. I take 137mg of levothyroxine. I feel slow, my house is a tip, i sleep lots, i have put on two stone, I live in a fog. I feel desperate to get my lfe back. But I barely have enough energy to assert myself with the docs. I have sent my first letter to docs last week asking for amour.I would love to get my life back and reclaim my health

From Identical Twins Story
Identical twin sisters Coralie Phillips and Donna Roach have just made a very brief PowerPoint presentation entitled ‘Thyroid Threats Part 1’ (about their experiences of hypothyroidism with photos that illustrate the impact of hypothyroidism) available here.

In addition, they have made a very brief PowerPoint presentation entitled ‘Thyroid Threats Part 2’ (with a very short outline of the findings of the Master of Science project of Coralie Phillips and the findings of the Master of Science project of Donna Roach) available here.

From Patient CB
I am a thyroid patient, initially hyperthyroid and now hypothyroid following radioactiveiodine. I was under the care of my local hospital initially on block-and-replace with Levothyroxine and always felt really ill. Following the RAI, I was again put on Levothyroxine and felt really ill. However, the endocrinologist refused to believe that the Levothyroxine was the problem, leaving me feeling exceptionally ill and unable to function in my everyday life.

I requested trials of either T3 or NDT, but my endocrinologist refused as she didn’t think the GMC would like it and didn’t want to end up in a disciplinary. In the end, I bought some NDT and self-medicated.

From my first dose, I felt the difference. The pain in my legs which had been utterly disabling actually eased, then went away. The brain-fog lifted. I needed less than 16 hours sleep each day. I became normal again for the first time in almost 2 years. Last week I cycled a very hilly 30 miles: 4 months ago I couldn’t walk 200 metres and would yelp when trying to stand up from a chair.

I have never seen Dr Skinner, but I know that doctors who feel limited by the GMC are letting down people like me.

We need doctors who are sometimes prepared to go outside of the straight guidelines, as sometimes the guidelines just don’t fit the patient and to some doctors (and patients) this is obvious. Some of your patients are desperate yes, desperate for someone to stand up and realise that their medication isn’t working and to try something else, in spite of the blood-tests saying that they are OK

As one such patient, I really appreciate the courage of specialists such as Dr Skinner, and feel that considering the numerous success stories he can provide, maybe the GMC should question the guidelines rather than question someone for being prepared to help his patients. If I had known about Dr Skinner when I was on the Levothyroxine, I would have asked for a referal to him.

From Patient AQ
Its not even like being tired, just spaced out, I’ve been like this for about a week. This is happening more regular as I get older (Im 57). I made up an excuse not to go to a friends wedding this weekend, as I knew I would’nt be able to cope with such a long day away from my bed. Sometimes I think the thyroxine doesn’t work as I often get boughts like this. I’m due for my blood test on Wednesday and when I tell the Doctor how lousy I feel he just says, well the levels are normal and that 150mg is what I should be on, he advises eating healthy ,which I do any way, to lose weight. I have a very small 5ft frame and weigh 12st 5lbs about 4 stone overweight, and cannot shift it. I normally walk to work each day, about two miles there and two miles back, but this week I’ve had to get a taxi to work being too tired to walk. I get terrible muscle stiffness as well. I dosed off on my lunch break yesterday, and woke up feeling my brains were made of cotton wool. I take my meds regularly every morning without fail. I hate feeling this way, I can well understand how some people with this condition feel suicidal.

From Patient D
Cant lose weight, despite eating little (this not believed)

Libido- what libido? Constipation (twice a week if I am lucky) Tire easily, no energy, Forgetfulness, poor concentration, Stiffness, mornings especially, Loss of outer eyebrows and hair on lower legs, Panic attacks

The above symptoms, and many more, I had for about 5 years. When I was younger I was 9st all my adult life (except when pregnant) up to about 5 years ago. I had severe menstral problems very heavy periods every three weeks, bad PMS, migraines, always cold etc., When I started the menopause proper I had severe migraines a couple of days before my period as well.

Four years ago I went to my doctor thinking I was HypoT he thought I was a well. Surprise the tests were ‘normal’. He did not offer any further tests or reasons for my problems and, stupidly, I didn’t ask.

I was desperate to do something about my health so I searched the internet and after a few months, I too found Serenity cream I order it direct from the USA now. My symptoms have eased and I can function day to day. From reading books about unopposed estrogen, I think that I have had it from the time my son was born. Too much estrogen and little or no progesterone to provide a balance causes all sorts of problems including interference with the thyroid hormone. I have quite a lot of information for my doctor when I next see him I hope he will be sympathetic and not annoyed that I am doing something on my own.

From Patient NS
No blood tests were done, I was placed on various strong psychoactive medications. As a result of these medications I have stomach erosions. I made so many visits to the doctors in Leeds complaining of tiredness, forgetfulness and other symptoms of hypothyroidism but it was not until a lovely locum doctor asked me whether I had ever been tested for thyroid problems that I was finally diagnosed. By that time I was sleeping for 3 days at a time and was still tired. One of the practice doctors at least had the decency to apologise to me, but it just shows how they put you in the `she is mentally disturbed box and dont proceed any further with investigating your problems. Thank God for that locum, I could have gone into a coma and died. Over the years I have had horrendous symptoms of pain, dullness, breathlessness, slowness, too cold, too hot, hair loss, anxiety, and slowly over time my blood pressure from borderline 9 years ago has become constantly high, but instead of investigating underlying problems I am told it is `essential hypertension. Again, no further investigation is apparently needed. The constant stress of my body dragging around with low thyroid symptoms will put a strain on it and it will need to compensate, this is plain logic.

The HPA axis is a finely tuned symphony and if one is out others parts kick in to try and compensate, this might not always be good for me, as my health has seriously deteriorated more quickly over the last 3 years, my body has cried out for help but got none. My thyroid condition was considered `controlled even though I was having every symptom of hypothyroidism under the sun. I have become so ill I can hardly ever leave the house. When I went recently to an endocrinologist, I got the same basic TSH, T4 test and told my thyroid was treated and ok. I left with a diagnosis of CFS because they either did not want to investigate any further or the NHS was not willing to fund any further investigations. I asked for a T3 T4 combination therapy trial and this was refused. I would like to know why this was refused when there was a possibility that it might help me.

I have been forced to go out on my own medically (even though I am unqualified) and take my health into my own hands because of the disinterest in the fact that alternatives are available, and their unwillingness to try them. This is not acceptable. I am currently trying to climb dosages of Armour thyroid. I have no idea how long it will take my body to heal after so many years of insufficient therapy for my Thyroid which is in fact accompanied by TPO antibodies, another test which I had to persuade the doctor to run under duress last year. My adrenal glands seem to be having problems with the speeding up of my metabolism possibly due to years of low metabolic rate and ineffectual treatment.

I still hope for an understanding doctor who does not have this tunnel vision. I have had most of my life wasted in illness because of this rigid policy on the part of the NHS. Please change it for our quality of life and our safety.

From Patient MT
Surgery was the best option for me at the time, so I had the growth and the right half of my thyroid removed. All went well, and the recovery wasn’t too bad, but 5 years down the line, and I had another goiter on the remaining half!

This time I went privately, and after discussing my options with the surgeon, I opted for surgery once more. The remaining half of my thyroid was removed (with the goiter of course), and about 4 weeks post surgery, I was given Levothyroxine at 50mcg daily. That was back in November 2007 though, and I am now on 100mcg of Levothyroxine (I’m awaiting the next batch of bloods before any changes to the dose are made).

So that’s me up to now and I’ve made it as brief as possible, but hey these things are rarely simple are they when it comes to thyroid issues?

From Patient 006
Before my hysterectomy I worked part-time, at Safeways was a member of Surestart on the steering group, worked with Childrens Fund doing community consultation looked after my 5 children and also completed a college course. This was normal for me to all these things; I always had an endless supply of energy. The only thing I saw my G.P about was my ante-natal appointments and then about my periods becoming heavier. I had a large fibroid which had been diagnosed when I was 26, but it didnt really cause me too many problems and I ignored all efforts to get me to have a hysterectomy because of it.

Then in May 2002 whilst on a training course in London, I began to bleed profusely, I felt faint and dizzy and decided enough was enough and agreed to the hysterectomy, which I had in July 2002. Even though I had an abdominal incision, I had no post op pain relief apart from Voltorol. I was fully mobile the next day and just 4 days later was able to walk from St Thomass Hospital to Waterloo train station, and caught the train back home to Folkestone. I felt fit and well with no complications apart from a urinary tract infection due to being catheterized. Just 20 days later I started my current job.

In Nov 2002 I had what I thought was a viral infection, and took a couple of Ibruprofen pills to ease the symptoms. I began to swell and was admitted to hospital for treatment; it appeared that I had developed an allergy to the drug. I have never suffered from any kind of allergy or sensitivity before. Then gradually I began to notice that if I ate certain types of food, especially those containing Soya, I would have symptoms that resembled arthritis. My diet then became one that consisted of mainly fruit and vegetables. So many processed foods have soya in them.

I began to feel tired a lot of the time, but assumed it was an age thing!! My house became untidier and I began to lose items. I was becoming depressed and so frustrated at all of this. My college work began to slip and I had no concentration.

I had started to withdraw socially from family and friends, just thinking about getting ready to attend an event would fill me with dread. This began to cause family arguments as my husbands family believed that I was snubbing them. I wasnt, just felt too tired to be sociable. In the end I just stopped going. My Partner and I began to argue most of the time and I started to hate him. I believed I was the only one doing the housework and nobody else was helping.

I started to go to bed at 8.30pm and even 12 hours of sleep would not be sufficient. I would always be late in the mornings and it felt like I was on slow motion whilst the clock was on double speed. Getting my children to school on time and with their equipment became a real challenge. The receptionist at the school would roll her eyes at me, and comment late again Mrs. Tanner I felt like I had become the problem family. I started to get the bus instead of walking to try to gain some time, but would very often miss it due to my lack of energy. The fatigue plus joint and muscles pains became worse by now, even though I was totally avoiding soya products and catching the bus.

I began to believe my partner was poisoning me, I started to prepare my own food and drinks and developed a suspicion that he was tampering with my coffee. I kept my jar of coffee in my handbag and never let it out of my sight, it put a real strain on the relationship. Mislaying items was becoming a real problem; I began to accuse everyone in the house of trying to make me think I was going mad. I was getting more and more verbally aggressive to my family. The mood swings were horrendous, I was aware of them but felt powerless to stop them. I began to shut myself away in the bedroom just sleeping and listening to music on my Mp3 player as that way I didnt have to make conversation with anyone and risk an argument. I had forgotten birthdays, anniversaries etc by this time too which caused tension and arguments. I was past caring about anyone else by this stage though and felt no remorse for anything I said or did it was like I had no emotions left.

July 2004 I moved out of the family home, taking my youngest 3 children with me, I just couldnt take anymore, and felt suicidal, moving out was my only option. It destroyed my relationship with my eldest 2 children in the process though. I seemed fine for a while and put the tiredness down to being a single parent of 3 kids and working full time. I now had the luxury of going to bed at 7pm, it was also nearer to school and work but still I was always late. Oct 2004 I had a small bowel obstruction; it became necrotic and had to be resected, I also had peritonitis. The fatigue got worse over the next few months, my head, arms and legs ached constantly and my sinuses always felt inflamed. I contacted my landlord and got him to organise an inspection of my gas central heating system as I thought that I had carbon monoxide poisoning. This came back clear, yet I still felt unwell. It was like having flu all the time; I was always freezing cold too sometimes I would shake uncontrollably and only a hot bath would stop it. My skin appeared waxy and smooth, the tops of my legs felt spongy, but didnt pit when pressed. I assumed I was still recovering from the surgery and convinced myself that I would feel better soon.

I began to forget things I was supposed to do, even ordering a MacDonalds for the 3 kids was like trying to remember the order for 100 people. I became very confused when it came to form filling, or trying to learn a new task at work, so I stopped trying to do these things. I would get money from the cash-point and walk away leaving it at the machine, or buy something in a shop and walk away without the item or the change. I began to think that I had Alzheimers or possibly CJD by now.

I decided to take the kids on one last holiday, then I would go to the doctors and find out what was wrong. I was convinced I was about to die and wanted them to have at least one good memory of me. I made every effort and hid the pain I was experiencing to give them a great time, even going on the big rides at the funfair. I came back from holiday and felt so very ill, my face fingers and stomach had ballooned, I couldnt do up the buttons on my clothes and looked like the elephant woman. My GP took my BP and it was very high so he sent me to my local hospital. I was there for 4 days; no one could decide what was wrong with me. The medical team kept passing me back to the surgical team and vice versa. A scan revealed my liver was enlarged but was functioning and also I had developed ovarian cysts. My blood test results showed I had a thyroid problem!! I didnt know if I was under or over active, the nurse wasnt sure which it was either. I was just given 100mcg of levothyroxine a prescription for 5 days supply and a note for my GP then discharged. I had no information leaflet or booklet; I was scared and went to my then ex-partners home to stay until I felt better. I was worried that I couldnt care for the kids safely. I went to bed at 9pm but woke an hour later with crushing pains across my chest, I couldnt breathe or speak, and my head was spinning. My partner called an ambulance and the paramedics ran an ECG on me in the vehicle. All was fine, normal heart rate, BP and O2 levels were 99% they suggested that perhaps my levothyroxine was a little high for a starting dose and not to take anymore until I had sought medical advice. The SEDOC called me to see if I was ok, and chatted to me for a while. I went to see my GP who reduced my dose to 50mcg, he was also concerned about the bruising I had sustained during my blood tests, a massive deep purple mark had formed right across my elbow crease it was also very painful to touch.

Even on 50mcg I didnt feel any better, I felt breathless and dizzy, and every time I tried to increase the dose the symptoms got worse. I had to give up my flat as I really couldnt care for my kids and moved back home with my ex partner. My speech was slow and deliberate and I would forget what I wanted to say mid sentence; I was asked a few times if I had been drinking, but I hadnt. I passed out a few times, my chest used to hurt. I passed out in Debenhams and was taken to the walk in centre. They tested my blood sugar levels, it was 3.3. I had eaten porridge at 7 am and I passed out at 10 am. I had a meal at the hospital canteen and had an appointment with my practice nurse at 4pm. At 4pm my blood sugar was 7.7. I became too scared to be out alone after that episode just in case it happened again and started to suffer what I now realise were panic attacks.

The spongy skin spread to my arms and legs and my eyelids became puffy. My hair began to fall out by the handful and I had 3 large bald patches. I also gained 30lb in 7 weeks of taking the levothyroxine. My TSH was coming down but my symptoms were getting worse and it seemed like I was seeing Dr every week by now with a new ailment. I knew I was becoming a pest, but felt so ill and just wanted to feel well again. I had a lung function test which I failed; I was prescribed a steroid inhaler for asthma. I used it a few times but it burned my mouth so stopped it. I kept on increasing my dose until I was on 125mcg. The breathlessness began to ease on its own as my TSH came down but the depression and feeling flu like feelings got worse. Walking had become very painful, my arms felt so weak even eating a meal would tire me out. I started my own research into Hypothyroidism and found out about Armour. I wanted to give it a try; it couldnt make me feel worse than I already did but was disappointed to discover that it wasnt available in England.

Thoughts of staying this ill forever filled me with dread, it wasnt a case of if I would commit suicide, it was more of a case of when now!!! I was failing at home and work. I was still too tired and aching to do anything with my kids. I was fat and bloated and so very sick I had no motivation for anything; I just wanted to go to bed and stay there. A blood test revealed an elevated CEA level ( carcino embryonic antigens) and deep down I was hoping I had something terminal, as it would save me the bother of killing myself wouldnt it?

My research showed that there was a strong link between thyroid disorders and type 2 diabetes. I have a very strong family history of this, and had gestational diabetes with my last pregnancy. My mum dies of diabetes complications and my sister who had always had a weight problem died of pancreatic and liver cancer. With this in my mind,I decided to ask to see an endocrinologist in a last ditch attempt at getting some answers/ results and my Dr referred me, I think just to get me out of his hair and shut me up. I had taken the decision to stop levothyroxine, whether I got the chance to try Armour or not. I couldnt go on like this and wanted it all to stop. I was prepared to let nature take its course and die. I felt far worse on levothyroxine than I did before I took it. The appointment was amazing; I really didnt take in what he said about anything else, only that he was prepared to give me a try on Armour. I could have kissed him. The wait until it was all set up was nail-biting to say the least. This was my only hope of getting my life back.

Since being on Armour, my life has changed so much. I am back to walking the 2 miles to school and work and doing things with my kids like going to the beach and rock pooling for shrimps and crabs, I have even started to make cakes again. At work I am back to functioning on all cylinders, luckily I have a boss with an auto immune disorder who understood what I was going through and supported me through it all, even attending Drs appointments with me. The weight loss hasnt been dramatic but very noticeable to me and others I am still more like a beach ball than a beach babe but I feel good about myself once again. My 11yr old son commented its good to have my mum back We are no longer the problem family at the school; we get there on time and fully equipped. I have started to enjoy my garden again too and have grown some flowers this summer. The confusion has disappeared and I know my sharp wit has returned to its former glory. During this hot spell, I was quite proud of my wet armpits, much to the amusement of my family and friends, I knew it meant that I was finally getting well again though. The palpitations at night are now just a distant memory and I wake up feeling like I have actually been to sleep. I have managed to build bridges with my adult daughter, things are still strained though. I am afraid that this will never happen with my adult son. He has said he never wants anything to do with me again, and I cant say I blame him. I put my family through hell.

One day both the general public and Drs will truly understand the effect a thyroid disorder has on all aspects of your life. Most seem to think that it just makes you fat, or thin in the case of hyper they dont realise the far reaching effects on everything around you. People need to be aware of the symptoms, and feel confident in going to see their Drs with them. Drs need to open their ears and minds to what their patients are telling them instead of listening to the drug companies and be confident in their skills in making the right diagnosis and healing thyroid patients with the right thyroid replacement therapy. I know Armour isnt for everyone but this is about having the right of choice, just like the Patients Charter says we should!! I just assumed it was just my age and should have gone to the Drs sooner, but I was scared of being told it was all in my head! Looking back now I truly believe I had what they refer to as thyroid madness. I recently got a copy of the letter my endo sent to my GP and found out that my TSH was immeasurably high and my T4 was immeasurably low when I was admitted to hospital last year. It would seem that I was well on my way to myexoedema coma and nobody would have realised it as there is no family history of thyroid problems. I didnt know how ill I had become until I got well again. My last TSH was 0.4, so it looks like its suppressed and I will probably be told I have to come off Armour, but I wont ever take levothyroxine again, I have promised myself that much.

We need a Government education programme like the ones they do for diabetes, thyroid disorders are just as life threatening but unfortunately no one seems to take it that seriously.

I want to say a big thank you to everyone on the TPA board. If it wasnt for you then I would have probably killed myself by now. The information I got from the site enabled me to take control of my health, both physically and mentally. Armour has given me my life back

From Patient 007
Frequent visits to GP over several months. Excessive tiredness, pains in odd places, cold all the time etc. Was sent for a blood test for gout. Negative. Told ‘all is well’. Began to have trouble breathing and swallowing. Saw a different GP Asked me to blow into peak flow meter. I collapsed. My son was sent for to take me home. I was helped into car by GP and son, and told if I didn’t recover to phone back. This was done. I was admitted to hospital. Too cold to sleep but there were no extra blankets. No thyroxin could be found in my blood. I asked why the problem not recognised before and was told I lacked the obvious symptoms of weight gain and hair loss. I wailed ‘but I had everything else’! I was barely conscious.The breathing and swallowing problems were because of a goitre which went behind my sternum. I was told it would be three months before I would be back on my feet. It was. I could do nothing for that time.

When home the GP seemed to think he knew better and said I could increase my dose more quickly than Dr W. had said. I would awake with a noisy racing heart. I remember one night when I wondered what a death rattle sounded like. This same GP repeatedly asked me to hold my hands out in front of me he thought they should shake.

When slow to respond to questions Dr W asked if there was Alzheimer’s in the family. There is not. He of all men should understand that everything slowed to a near stop.

I have been unable to work full time but consider I have come off lightly compared with some of the people I read about on your site.

This all happened 10 years ago and I am sad to see that the same thing could happen to someone else today.

Thank you again for all you do .

My current GP has read the files is keen to learn.
Patient-Victim A

Hi Sheila thanks for the welcome! I’ve read so much about you and really do admire your tireless efforts to campaign for the effective treatment of thyroid illness. I’ve visited the website often (and even recommended it to my GP who I think was impressed by it) but for some reason only just noticed there was a forum Better late then never, though!

Yes I agree with you when you say that docs aren’t trained to look for adrenal insufficiency in hypothyroid patients. It is truly extraordinary that endocrinologists only regard full-blown Addison’s to be the “adrenal insufficiency” contraindicated on thyroid hormone packaging. In a way I’m thankful I wasn’t treated with thyroxine on the NHS because my adrenals would’ve been really compromised by that I’m sure. And in any case, having failed to get on with Armour because I can’t tolerate T4 but definitely respond to T3 (all under care of Dr P), I doubt very much I would have been prescribed T3 on the NHS.

TSH yes, why a pituitary hormone should determine a diagnosis for those of us with thyroid hormone “resistance” is beyond me ????

Yes, with my ME/FMS diagnosis, I have been alerting my many docs to my signs and symptoms of low thyroid for literally 20 YEARS, but always the TSH would come back in range, and that would be that. The fact is that in recent weeks, when my cortisol was high enough to allow for good T3 uptake, ALL of my so-called “ME” symptoms disappeared, which was extraordinary. I had to stop the T3 recently for 2 days, and ALL those symptoms came back in full force. Just switched off, then back on again once the thyroid hormone was stopped. That tells me unequivocally that I have thyroid hormone resistance, not CFS. Contentious, perhaps, but ME is a diagnosis of exclusion, and if there is another explicable organic cause of the symptoms, then according to Dr Charles Shepherd of the ME Association a diagnosis of ME should not then be made. I feel the untreated adrenal insufficiency has also contributed to my lifelong chronic fatigue, and of course there are many studies demonstrating low cortisol in ME patients, but still the penny doesn’t seem to drop in mainstream medicine.

I agree with you regarding the whole raft of diseases that untreated hypothyroidism leads to. Dr Lowe’s tome is good on this. I already have the low bone density and the mitral valve prolapse hopefully it’s not too late to avert the heart disease.

You asked if I’ve had the 24hr salivary cortisol test? Yes, Dr P ordered that. He said it was hardly worth doing as my adrenal insufficiency was so obvious, but did so for completeness.

And it showed stage 5/6 adrenal fatigue (abnormally low morning and daytime cortisol, too high

at night). He feels I was born with “congenital adrenal hypoplasia” (not ” adrenal hyperplasia a different disease). Hence my lifelong weakness. And yes, I think my sex hormones are out of whack too. But apparently these often spontaneously rebalance once you get the thyroid and adrenal hormones right. That’s definitely one for Dr P in the near future.

And thanks for the reference to Dr H I will do some research.

Re the candida oh, I’ve had this for most of my life! Been treated for it many times. I’ve been on a no sugar, no moulds, low carb diet for 20 years now! Am allergic to moulds and candida, which doesn’t help!

And, yes I wondered about my ferritin and had it checked a couple of months ago it was ok. I eat a lot of red meat on my stone age diet!

BTW I thoroughly recommend it as a healthy way of eating great for hypoglycaemia and autoimmune disease ( I have Hashimoto’s). I noticed a big difference when I started it.

OK, I have some questions I’ll post soon, but for now I need to dish up my organic roast chicken!!
Thanks again for all your insightful thoughts Sheila

Patient-Victim B

I saw the endo & came away upset and angry. Initially saw endos registrar (4th different member of endos team in 4 visits!!); was not happy he didnt even have my records in front of him, let alone know me; heart sank when he was all for adjusting my dosage slightly to see how we go on (am sick of hearing that); knew

I was in real trouble when I raised notion that synthetic thyroxine may not be suitable for me and registrar responded Im not sure whether the thyroxine you are on is synthetic or not ! Seriously.

I demanded to see the endo himself, eventually did & things actually got worse: it turns out he is one for the numbers & if they are fine then youre fine . . . . . I tried him with the nice spreadsheet of basal temps I had logged for a month (ave. early morning temp = 35.7C!) he put it on one side with a grunt; and when I said I think part of my continuing fatigue problem was adrenal problems, he actually shouted at me YOURE WRONG! going on to say the Synacthen test proved the adrenal gland is fine, other test results are good, hormones are not your problem and you need to go back to your GP to be treated for depression!!

I left the hospital red-faced & agitated: I didnt know what to do with myself & still dont really. Yes I am feeling down but as a result of the thyroxine not making any difference & still feeling exhausted most of the time: endo seems to think its the other way around & as long as the numbers are to his liking, he doesnt seem interested in anything else (not unusual I believe?). Last bloods showed TSH 0.31, FT3 5.1 & testosterone 30.3 (that really was only one he kept referring to). When I asked about T4 result, I was told they hadnt tested for it because didnt need to! Grrrr.
Patient-Victim CI began to have health problems in 1980 manifesting as psychiatric symptoms but also aggitation, palpitations, sweating, like hyperthyroid symptoms. No blood tests were done, I was placed on various strong psychoactive medications. As a result of these medications I have stomach erosions.

I made so many visits to the doctors in Leeds complaining of tiredness, forgetfulness and other

symptoms of hypothyroidism but it was not until a lovely locum doctor asked me whether I had ever been tested for thyroid problems that I was finally diagnosed. By that time I was sleeping for 3 days at a time and was still tired. One of the practice doctors at least had the decency to apologise to me, but it just shows how they put you in the `she is mentally disturbed’ box and
don’t proceed any further with investigating your problems. Thank God for that locum, I could have gone into a coma and died.

Over the years I have had horrendous symptoms of pain, dullness, breathlessness, slowness, too cold, too hot, hair loss, anxiety, and slowly over time my blood pressure from borderline 9 years ago has

become constantly high, but instead of investigating underlying problems I am told it is essential hypertension. Again, no further investigation is apparently needed. The constant stress of my body dragging around with low thyroid symptoms will put a strain on it and it will need to compensate, this is plain logic.

The HPA axis is a finely tuned symphony and if one is out others parts kick in to try and compensate, this might not always be good for me, as my health has seriously deteriorated more quickly over the last 3 years, my body has cried out for help but got none. My thyroid condition was considered controlled even though I was having every symptom of hypothyroidism under the sun. I have become so ill I can hardly ever leave the house.

When I went recently to an endocrinologist, I got the same basic TSH, T4 test and told my thyroid was treated and ok. I left with a diagnosis of CFS because they either did not want to investigate any further or the NHS was not willing to fund any further investigations. I asked for a T3 T4 combination therapy trial and this was refused. I would like to know why this was refused when there was a possibility that it might help me.

I have been forced to go out on my own medically (even though I am unqualified) and take my health into my own hands because of the disinterest in the fact that alternatives are available, and their unwillingness to try them. This is not acceptable. I am currently trying to climb dosages of Armour thyroid. I have no idea how long it will take my body to heal after so many years of insufficient therapy for my Thyroid which is in fact accompanied by TPO antibodies, another test which I had to persuade the doctor to run under duress last year. My adrenal glands seem to be having problems with the speeding up of my metabolism possibly due to years of low metabolic rate and ineffectual treatment.

I still hope for an understanding doctor who does not have this tunnel vision. I have had most of my life wasted in illness because of this rigid policy on the part of the NHS. Please change it for our quality of life and our safety.
P
atient-Victim D

I’m just too exhausted to argue with them any more. The other little gem my GP came out when I had just started to tell him my symptoms was that medical science can’t solve everything. I have lost all faith in doctors. You get treated so badly. I can’t believe that the medical profession are happy to leave people like us suffering for so long and can’t even be bothered to be nice about it. The last doctor I saw was marginally better, but she still came out with “I think you have psychological issues”. [functional somatoform disorders] That’s when you know they can’t think of what else to do with you.

Patient-Victim E

I have just been to my doctor yet again. I am 47 years old, no period for 2 years and I am so fatigued and weak that I can hardly walk. I fought to get tests done but my blood test needs to be repeated because it clotted. Next Monday to get blood taken again and another week for resultsI couldn’t wait. I went to doctor’s and was helped in because I almost collapsed with the effort of walking. He said it was a panic attack, that I am having 24/7 panic attacks and that is why I am like this he gave me Diazepam 2mg 3x daily. My hair is falling out on my head, all over my body, my eyebrows especially outer part, and I have very little pubic hair left. I have put on 3stone in a year even though I have no appetite and it is most obvious in the abdominal region. I can’t swallow properly because I feel as though I am choking, have itching all over and a rash on my hands.

My eyesight is blurry and I can’t focus properly, constipation, pain in my toes and fingers as well as tingling there and all over, joint pain in my wrists and elsewhere. I had insomnia for a couple of months but now am sleeping most of the time. I need to lie down after a few minutes doing anything and if I try to walk upstairs I need to stop several times it is very difficult to do. I can’t think straightand forget things all the time.

I have a white patch on my eyelid which I was told may be high cholesterol. My doctor has agreed to test for thyroid but said that it will be normal so I don’t expect any help there. He thinks it is all in my mind put me on fluoxetine a couple of months ago and insists I am doing this to myself or imagining it. Am I going mad? I am certainly considering taking all the damn diazepam and putting myself out of this miserythis is not living unless it is hell on earth. What can I do?

Patient Victim F

Now that I am well, I can look back over the last 3-4 years and see how the hypothyroidism sneaked up on me. The symptoms were very pronounced but I had put them down to being peri menopausal as had never even heard of thyroid disorders before.

Before my hysterectomy I worked part-time, at Safeways was a member of Surestart on the steering group, worked with Childrens Fund doing community consultation looked after my 5 children and also completed a college course. This was normal for me to [do] all these things; I always had an endless supply of energy. T

The only thing I saw my G.P about was my ante-natal appointments and then about my periods becoming heavier. I had a large fibroid which had been diagnosed when I was 26, but it didnt really cause me too many problems and I ignored all efforts to get me to have a hysterectomy because of it.

Then in May 2002 whilst on a training course in London, I began to bleed profusely, I felt faint and dizzy and decided enough was enough and agreed to the hysterectomy, which I had in July 2002. Even though I had an abdominal incision, I had no post op pain relief apart from Voltorol. I was fully mobile the next day and just 4 days later was able to walk from St Thomass Hospital to Waterloo train station, and caught the train back home to Folkestone. I felt fit and well with no complications apart from a urinary tract infection due to being catheterized. Just 20 days later I started my current job.

In Nov 2002 I had what I thought was a viral infection, and took a couple of Ibruprofen pills to ease the symptoms. I began to swell and was admitted to hospital for treatment; it appeared that I had developed an allergy to the drug. I have never suffered from any kind of allergy or sensitivity before. Then gradually I began to notice that if I ate certain types of food, especially those containing Soya, I would have symptoms that resembled arthritis. My diet then became one that consisted of mainly fruit and vegetables. So many processed foods have soya in them.

I began to feel tired a lot of the time, but assumed it was an age thing!! My house became untidier and I began to lose items. I was becoming depressed and so frustrated at all of this. My college work began to slip and I had no concentration.

I had started to withdraw socially from family and friends, just thinking about getting ready to attend an event would fill me with dread. This began to cause family arguments as my husbands family believed that I was snubbing them. I wasnt, just felt too tired to be sociable. In the end I just stopped going. My Partner and I began to argue most of the time and I started to hate him. I believed I was the only one doing the housework and nobody else was helping. I started to go to bed at 8.30pm and even 12 hours of sleep would not be sufficient. I would always be late in the mornings and it felt like I was on slow motion whilst the clock was on double speed. Getting my children to school on time and with their equipment became a real challenge. The receptionist at the school would roll her eyes at me, and comment late again I felt like I had become the problem family. I started to get the bus instead of walking to try to gain some time, but would very often miss it due to my lack of energy. The fatigue plus joint and muscles pains became worse by now, even though I was totally avoiding soya products and catching the bus.

I began to believe my partner was poisoning me, I started to prepare my own food and drinks and developed a suspicion that he was tampering with my coffee. I kept my jar of coffee in my handbag and never let it out of my sight, it put a real strain on the relationship. Mislaying items was becoming a real problem; I began to accuse everyone in the house of trying to make me think I was going mad. I was getting more and more verbally aggressive to my family. The mood swings were horrendous, I was aware of them but felt powerless to stop them. I began to shut myself away in the bedroom just sleeping and listening to music on my Mp3 player as that way I didnt have to make conversation with anyone and risk an argument. I had forgotten birthdays, anniversaries etc by this time too which caused tension and arguments. I was past caring about anyone else by this stage though and felt no remorse for anything I said or did it was like I had no emotions left.

July 2004 I moved out of the family home, taking my youngest 3 children with me, I just couldnt take anymore, and felt suicidal, moving out was my only option. It destroyed my relationship with my eldest 2 children in the process though. I seemed fine for a while and put the tiredness down to being a single parent of 3 kids and working full time. I now had the luxury of going to bed at 7pm, it was also nearer to school and work but still I was always late. Oct 2004 I had a small bowel obstruction; it became necrotic and had to be resected, I also had peritonitis. The fatigue got worse over the next few months, my head, arms and legs ached constantly and my sinuses always felt inflamed. I contacted my landlord and got him to organise an inspection of my gas central heating system as I thought that I had carbon monoxide poisoning. This came back clear, yet I still felt unwell. It was like having flu all the time; I was always freezing cold too sometimes I would shake uncontrollably and only a hot bath would stop it. My skin appeared waxy and smooth, the tops of my legs felt spongy, but didnt pit when pressed. I assumed I was still recovering from the surgery and convinced myself that I would feel better soon.

I began to forget things I was supposed to do, even ordering a MacDonalds for the 3 kids was like trying to remember the order for 100 people. I became very confused when it came to form filling, or trying to learn a new task at work, so I stopped trying to do these things. I would get money from the cash-point and walk away leaving it at the machine, or buy something in a shop and walk away without the item or the change. I began to think that I had Alzheimers or possibly CJD by now.

I decided to take the kids on one last holiday, then I would go to the doctors and find out what was wrong. I was convinced I was about to die and wanted them to have at least one good memory of me. I made every effort and hid the pain I was experiencing to give them a great

time, even going on the big rides at the funfair. I came back from holiday and felt so very ill, my face fingers and stomach had ballooned, I couldnt do up the buttons on my clothes and looked like the elephant woman.

My GP took my BP and it was very high so he sent me to my local hospital. I was there for 4 days; no one could decide what was wrong with me. The medical team kept passing me back to the surgical team and vice versa. A scan revealed my liver was enlarged but was functioning and also I had developed ovarian cysts. My blood test results showed I had a thyroid problem!!

I didnt know if I was under or over active, the nurse wasnt sure which it was either. I was just given 100mcg of levothyroxine a prescription for 5 days supply and a note for my GP then discharged. I had no information leaflet or booklet; I was scared and went to my then ex-partners home to stay until I felt better. I was worried that I couldnt care for the kids safely. I went to bed at 9pm but woke an hour later with crushing pains across my chest, I couldnt breathe or speak, and my head was spinning. My partner called an ambulance and the paramedics ran an ECG on me in the vehicle. All was fine, normal heart rate, BP and O2 levels were 99% they suggested that perhaps my levothyroxine was a little high for a starting dose and not to take anymore until I had sought medical advice. The SEDOC called me to see if I was ok, and chatted to me for a while. I went to see my GP who reduced my dose to 50mcg, he was also concerned about the bruising I had sustained during my blood tests, a massive deep purple mark had formed right across my elbow crease it was also very painful to touch.

Even on 50mcg I didnt feel any better, I felt breathless and dizzy, and every time I tried to increase the dose the symptoms got worse. I had to give up my flat as I really couldnt care for my kids and moved back home with my ex partner. My speech was slow and deliberate and I would forget what I wanted to say mid sentence; I was asked a few times if I had been drinking, but I hadnt. I passed out a few times, my chest used to hurt. I passed out in Debenhams and was taken to the walk in centre. They tested my blood sugar levels, it was 3.3. I had eaten porridge at 7 am and I passed out at 10 am. I had a meal at the hospital canteen and had an appointment with my practice nurse at 4pm. At 4pm my blood sugar was 7.7. I became too scared to be out alone after that episode just in case it happened again and started to suffer what I now realise were panic attacks.

The spongy skin spread to my arms and legs and my eyelids became puffy. My hair began to fall out by the handful and I had 3 large bald patches. I also gained 30lb in 7 weeks of taking the levothyroxine. My TSH was coming down but my symptoms were getting worse and it seemed like I was seeing Dr every week by now with a new ailment. I knew I was becoming a pest, but felt so ill and just wanted to feel well again. I had a lung function test which I failed; I was prescribed a steroid inhaler for asthma. I used it a few times but it burned my mouth so stopped it. I kept on increasing my dose until I was on 125mcg. The breathlessness began to ease on its own as my TSH came down but the depression and feeling flu like feelings got worse. Walking had become very painful, my arms felt so weak even eating a meal would tire me out. I started my own research into Hypothyroidism and found out about Armour. I wanted to give it a try; it couldnt make me feel worse than I already did but was disappointed to discover that it wasnt available in England. Thoughts of staying this ill forever filled me with dread, it wasnt a case of if I would commit suicide, it was more of a case of when now!!! I was failing at home and work. I was still too tired and aching to do anything with my kids. I was fat and bloated and so very sick I had no motivation for anything; I just wanted to go to bed and stay there. A blood test revealed an elevated CEA level ( carcino embryonic antigens) and deep down I was hoping I had something terminal, as it would save me the bother of killing myself wouldnt it?

My research showed that there was a strong link between thyroid disorders and type 2 diabetes. I have a very strong family history of this, and had gestational diabetes with my last pregnancy. My mum dies of diabetes complications and my sister who had always had a weight problem died of pancreatic and liver cancer. With this in my mind,I decided to ask to see an endocrinologist in a last ditch attempt at getting some answers/ results and my Dr referred me, I think just to get me out of his hair and shut me up. I had taken the decision to stop levothyroxine, whether I got the chance to try Armour or not. I couldnt go on like this and wanted it all to stop. I was prepared to let nature take its course and die. I felt far worse on levothyroxine than I did before I took it.

The appointment was amazing; I really didnt take in what he said about anything else, only that he was prepared to give me a try on Armour. I could have kissed him. The wait until it was all set up was nail-biting to say the least. This was my only hope of getting my life back.

Since being on Armour, my life has changed so much. I am back to walking the 2 miles to school and work and doing things with my kids like going to the beach and rock pooling for shrimps and crabs, I have even started to make cakes again. At work I am back to functioning on all cylinders, luckily I have a boss with an auto immune disorder who understood what I was going through and supported me through it all, even attending Drs appointments with me. The weight loss hasnt been dramatic but very noticeable to me and others I am still more like a beach ball than a beach babe but I feel good about myself once again.

My 11yr old son commented its good to have my mum back We are no longer the problem family at the school; we get there on time and fully equipped. I have started to enjoy my garden again too and have grown some flowers this summer. The confusion has disappeared and I know my sharp wit has returned to its former glory. During this hot spell, I was quite proud of my wet armpits, much to the amusement of my family and friends, I knew it meant that I was finally getting well again though. The palpitations at night are now just a distant memory and I wake up feeling like I have actually been to sleep. I have managed to build bridges with my adult daughter, things are still strained though. I am afraid that this will never happen with my adult son. He has said he never wants anything to do with me again, and I cant say I blame him. I put my family through hell.

One day both the general public and Drs will truly understand the effect a thyroid disorder has on all aspects of your life. Most seem to think that it just makes you fat, or thin in the case of hyper they dont realise the far reaching effects on everything around you. People need to be aware of the symptoms, and feel confident in going to see their Drs with them. Drs need to open their ears and minds to what their patients are telling them instead of listening to the drug companies and be confident in their skills in making the right diagnosis and healing thyroid patients with the right thyroid replacement therapy. I know Armour isnt for everyone but this is about having the right of choice, just like the Patients Charter says we should!! I just assumed it was just my age and should have gone to the Drs sooner, but I was scared of being told it was all in my head! Looking back now I truly believe I had what they refer to as thyroid madness. I recently got a copy of the letter my endo sent to my GP and found out that my TSH was immeasurably high and my T4 was immeasurably low when I was admitted to hospital last year. It would seem that I was well on my way to myexedema coma and nobody would have realised it as there is no family history of thyroid problems. I didnt know how ill I had become until I got well again. My last TSH was 0.4, so it looks like its suppressed and I will probably be told I have to come off Armour, but I wont ever take levothyroxine again, I have promised myself that much.

We need a Government education programme like the ones they do for diabetes, thyroid disorders are just as life threatening but unfortunately no one seems to take it that seriously.

I want to say a big thank you to everyone on the TPA board. If it wasnt for you then I would have probably killed myself by now. The information I got from the site enabled me to take control of my health, both physically and mentally. Armour has given me my life back
Patient GHi I am new to this forum but if you wish to use my story please do so. I believe I may have been suffering from hypothyroidism for many years but was only diagnosed (almost by accident) in Feb 07. From around age 40 onwards (I’m now 52) I kept gaining weight along with other subtle symptoms. No Eyebrows , thinning hair on top of head, skin drier, painful muscles and joints, palpitations etc. I did nothing, putting all the vague symptoms down to onset of the peri menopause. About 2 years ago however things got really bad and not only had I by then put on around 3 stone which i was unable to lose despite healthy eating and exercise (I’ve never eaten un healthily by the way)I’d developed seriously bad memory loss and confusion.

On top of this I started getting other vague symptoms, the most weird of which was numbness in both hands at night no matter which way I slept.

This was sufficiently annoying to wake me up and I would spend several minutes shaking my hands to get the feeling back, provoking pins and needles. Eventually my husband packed me off to our GP who, kindly soul, diagnosed carpal tunnel syndrome. He was about to leave it at that when I mentioned the tiredness, confusion etc. He packed me off for a blood test, closely followed by another for thyroid antibodies and diagnosed under active thyroid caused by defective immune system.

I was started on 75mcg levothyroxine plus 2.5mg bendroflumethiazide to counteract a very swollen foot and puffy eye.This seemed to have some effects and in the course of the next couple of months I lost a stone and felt physically a bit better but the mental confusion remained along with other physical symptoms which i don’t believe were apparent before taking the thyroxine. I also started having more frequent heart palpitations, particularly after bending down or activity. I had had to give up tap dancing a few years previuosly as this seemed to bring them on. Whilst they are not life threatening they are scary and uncomfortable. GP referred me to endocrynologist at this point.

To date I have seen the consultant only once after about a year!! The first 2 times I saw 2 different registrars. The first ordered a blood test for gout but never got the results back. The second DECREASED my thyroxine dosage (due to the palpitations) gave me beta blockers and sent me off for a 24 hour tape. At next visit (3 months later!) this revealed an SVT despite the fact I’d been resting in bed reading at the time!! So I was packed off for ECG and electrocardiogram. I’ve NEVER been given the results of these. Finally actually saw THE consultant who kept me waiting hour and 45 minutes and was then dismissive and packed me off to do a blood test for B12 deficiency in 10 weeks which he said he would write to me about he hasn’t and would see me in 6 months!!! I protested I felt no better and if anything worse to which he said my blood results were normal and although he could increase my dosage to 100mcg of thyroxine because of the SVTs he said only to take this every other day with 75mcg on alternate days. Try remembering this when you have no memory!! I asked about alternative treatments and said I didn’t think the thyroxine was having any effect.

He dismissed this with oh you’re not one of those who want to use pig thyroid that went out with the Ark and we don’t prescribe it. Couldn’t spare longer than 30 seconds for me and was rude enough to have another woman present during my consultation who he never introduced. Since this visit my intellectual health has further deteriorated to the point where I am finding it difficult to function in today’s fast paced modern office environment. Went back to GP to complain about consultant’s lack of interest and care and didn’t get anywhere. The ranks are clearly closing!!! I see the GP again on Friday and he no doubt will say wait till you see the consultant as I have an appointment with him the following week. I now feel like I may as well be taking sugar pills.

All the symptoms which took me to the doctors in the first place are back (with a vengeance) and on top of these I have other more annoying ones!! I find it is very difficult to explain ones symptoms and issues in today’s work place. I am a rather stoical person and tend to suffer on in silence. I have not explained the full range of symptoms to my boss but thought he was aware of the condition. Either he isn’t or he is one of those people who consistently tell me ‘Oh that’s easily treated with pills isn’t it?’ or worse still = ‘its probably your age or the menopause’. If I had a pound for every time I’ve heard that from so called colleagues I’d be rich and not need to work!!I recently foolishly agreed to take on a new role in addition to my existing one. A recent meeting proved to be my downfall and almost the last straw. I am now looking for a less intellectually challenging job as I emerged from a meeting feeling frazzled and humiliated. I am probably too quick to criticise myself but I was trying to minute the meeting ‘on line’. Several participants were in a rush to get away to another meeting and as a result they steamed through the agenda at a pace I found impossible to keep up with either on the keyboard or in writing. As a result i had to ask them to slow down and go back over items they’d glossed over.

The boss’s suggestion when I emerged clearly looking distressed next time you can’t keep up I suggest you take a paper copy in with you and write on it!!! I nearly threw the laptop at him and stormed out!! As it was I spent the rest of the day feeling close to tears and feeling pretty inadequate. I tried seeing a representative from HR but she merely sent me links to intranet sites and said something about my saying my health deteriorating to the point where i can no longer do my job properly!! That WASN’T what I’d said. What I’d ACTUALLY asked for was some recognition of the condition and appropriate SUPPORT and understanding!! There is a full page article in our staff mag about a transgender bloke getting support from the company to enable him to become a woman (in a very male dominated environment). No such support appears to exist for those with hypothyroidism!! Its like having an invisible disability. Even deaf people have an advantage as eventually people realise they are talking to a deaf person and adjust their behaviour appropriately. I on the other hand merely appear frazzled and stupid.

Patient H

Hello After 2 years on Levothyroxine I am not feeling much better than when I first started taking this medicine. The doctor put me on a lower dose of thyroxine recently (100/112mcu on alternate days/my suggestion) as a blood test previously showed T4-25.9(11-26)/TSH-0.02
(0.35-4.5)/T3-3.5(3.9-5.8) and now a further blood test shows T4-19.09 TSH-0.09 and T3-3.00 (T3 was below range). However, I upped my thyroxine back up to 125mcu because I became very depressed on the lower dose with constant suicide thoughts (never ever considered suicide before) and a lot of my symptons returned ie feeling cold, very constipated, dry mouth, eyes and skin, loss of hair, very tired all the time. In fact I felt better on the higher dose at least I wanted to stay alive. The doctor was oblivious to the low T3 result and refused to prescribe me a combination of T4/T3 or Armour saying they would not help me and even showed me printouts from the Internet. However, he was quite happy to prescribe anti-depressants which I refused. He then became concerned and agreed to my seeing an endocrinologist privately, which I can ill afford, but I am so frightened of myself when I become depressed. I am not feeling depressed now. I have been taking selenium for a couple of weeks (which kind Lilian recommended maybe 2 years ago, but I forgot all about her advice until I was so desperate). I also take zinc. Is Zinc helpful?

I am due to see an endocrinologist on the 10th January at a private hospital whom my doctor referred me to. On the specialist’s profile it says he specialises more in diabetes/insulin. Unfortunately, my doctor says this consultant is the only one available. I really do not want to waste my money on a person who might not be able to help me.

My question is I was thinking of seeing Dr. P when his surgery is in the West Country in February. However, I did read on the Internet that Dr. P., is unable to prescribe medication as he is now retired and only recommends supplements. Is this true? Sorry to ramble on. Maybe some kind person will be able to give me some help. Thank you so much.

Patient I

I have severe congenital hypothyroidism and take 200-225 mcgs daily. It is a very unpleasant and time consuming condition which I have been trying to manage for over twenty years. It would have helped if my Doctors had taught me how to live and manage this condition. I was never told how to take this medication, never told to take it on an empty stomach. When I was just 9 years old, I was taking as much as 300 mcgs daily and this made me severely hyperactive.

Now that I am older, I have learned through bitter experiences, how to take this drug responsibley. No thanks to my GPs who, in my opinion, have been useless in helping me. I am now going to go on a sick note and will end up on welfare benefits probably for the rest of my life because I have grown up on this drug and it has failed to give me the quality of life that i was told that I could expect. Doctors are liars and murderers who can potentially ruin your life like mine has been. They never told me about the side effects, they never told me anything about the stress my liver would be on and what kind of diet i should follow. I used to complain about the side effect but they made me feel like it was all in my head and now that I am older I am totally disgusted at the level of care and treament that I received.

I sometimes wish that I would have been better off dead than to have lived the way i have lived for the last twenty years. It has been very difficult for me to lead a normal life because I totally rely on levothyroxine and it initiated my physical and psychological development which has had too many complications. I sometimes wish to stop treatment but have no choice but to live on.

I think the NHS can not afford to deal with hypometabolic disorders responsibly. I was a cretin, mentally retarded, then they suddenly pumped me full of levothyroxine and I metamorphosed into a ‘normal’ looking human being who was completley unprepared for the changes that should have been introduced to me gradually. I should have been rehabilitated and counselled and socialized back into life,which never happened. I was given my medication, and told to shut up and take it. I am one upset individual who has had his life ruined by incompetent fools who earn large sums of money for screwing people up sat on thier backside drinking tea and just getting through the week pumping people with drugs and lies.

I am lucky because i educated myself to deal with the complex socio-psycho-physiological challenges that this condition presents. But not everyone is like me.

Patient J

I was diagnosed with hypothyroidism about 25 or over years ago. In my case probably hereditary because all family have it. I was given thyroxine and felt well on it.

I cannot pin point a time when I became ill as it must have been slowly creeping up on me, and several things happened, and which in hindsight I see, could well be thyroid related, but I did not know it then.

I kept going back to my doctor for these various things. My legs, feet and ankles swelled up very badly. So much so that my legs were stretch so much they were shiney. I got plantar fasciitis and also needed an operation for two frozen shoulders. I had been on a very strict diet for three years, not even cheating at Christmas’s and was so frustrated at only having lost a couple of stone at the most in all that time. I also had very bad pins and needles in my arm which was not a circulation problem because rubbing would not help. The last straw was when I started to fall asleep in mid sentence. I then knew there was something wrong. My GP did a TSH test, which was within range and even low, so told me there was nothing wrong with me. Didn’t even pursue other avenues as to why this was happening.

I often wonder if the reason he did not pursue other avenues was because he secretly knew it was a thyroid matter but his hands were tied.

I then decided to get my blood tested by a private clinic, to include T3, T4 and also B12. This came back as my T3 below range, T4 at the very lowest of the range, and B12 low. I took these results back to the GP who told me that they do not take any notice of T3 but that it looks as if I needed some more T4. I had another test for the B12 which subsequently showed I had pernicious anaemia.

The GP therefore decided that although 125mcg was adequate for me the week before (after the NHS inadequate test), it should be raised to 150mcg because I was still hypothyroid. I am quite disgusted as if I had not been able to get my tests done privately, I would still have been told I was euthyroid when, in fact, I was not.

However, after a couple of months feeling better on 150mcg the tiredness started to come back again, and I still could not lose any weight.

My husband was working at a private clinic and there was a doctor there who was also a nutritionist, so I went to see him privately. My GP seemed to have washed his hands of me because I would not take the Prozac he spent over 10 minutes trying to persuade me I needed.

This doctor arrange for some more tests including a 24 hour urine one. They all came back the same and with notes to say it looks as if I was not converting to T3, as the T3 was still below range.

This doctor told me there was no nutritional advice he could give me to lose weight until I had got my thyroid sorted, and he gave me a prescription for T3. I followed his protocol of starting slowly, and during the whole time I felt only better and no bad effects at all.

My NHS GP was so angry because I was taking the T3 that every time I went to see him about anything I was told the remedy was in my own hands. I was not sure whether he was implying it was because I was taking T3 or not taking Prozac. He also wanted me to take statins, which I also refused.

I then decided that I had no alternative but to change my GP. I asked to be changed to one but was told he had no vacancies and I could change but had no choice who to change to.
When I changed to my present GP he asked about medications I was taking and I told him. He wasn’t happy but implied that he would treat me but leave thyroid matters to the private doctor. I was happy with this.

However, the private doctor left this area, and I could only get prescriptions by post, and with the occasional telephone consultation where it was confirmed I had no problem. My GP did not like this arrangement and said it was bad medical practice. I therefore decided I would stop contacting the private doctor and buy the T3 myself. After all I knew how to take it and have had no problems with it, and had to pay for it anyway with the private prescription.

At the time I had difficulty finding T3 but had been reading a lot about Armour, and joined TPA. I therefore decided that I might as well switch to Armour. So for about 2 years I took T3 with thyroxine and for a further 3 I took Armour.

During those 5 years I gradually got better and better. In fact during the last six months I started to diet again and began losing weight at a steady safe pace like any normal person would on such a diet. I slept well, was awake during the day, no aches and pains, and generally speaking felt 20 years younger. My cholesterol went down to 4.3 my tryglicerides were excellent, I had better control of my blood sugar, although I did suffer from high blood pressure, the pills I was taking kept it down to a reasonable number. I was able to join clubs, read books, and had even bought a camcorder ready to take videos of my forthcoming holiday.

Then my GP told me he was not happy with what I was doing and that I must stop taking anything other than 100mcg of thyroxine a day or he will not be my GP. I tried to explain that 100mcg of thyroxine would be much too low as I was unwell when it was put up to 150mcg but he was adamant.

By the time I went on holiday a couple of months later, I could hardly walk. Weight had gone on, the tiredness had come back with a vengeance, I started to get pins and needles in my arm and hand again and my shoulders became painful again, which made me think those two things might well be thyroid connected. Ankles, feet and legs swelled up albeit not quite as bad as they were before as yet. My hair which was thinning before I started taking T3 and which started to thicken up again when taking Armour, started to thin again.

The GP is now telling me that my tiredness could be Sleep Apnoea and is arranging for me to go to a sleep clinic for diagnosis. He has told me to stop driving.

I would have thought that had my tiredness during the day been due to sleep apnoea it would have been like that during the 5 years I was on T3 or Armour, but it was not. My husband told the doctor that he had watched me sleep for 40 minutes and at no time did I stop breathing, yet he still will not accept it is because I am not being medicated properly for the thyroid.

I am still waiting to hear the results of a recent cholesterol test, but I know that since stopping the Armour my blood pressure has gone sky high. I have needed to take a much higher dose of blood pressure pills and have even been prescribed a diuretic, whereas when I was taking the Armour my blood pressure was well controlled on a much smaller dose of BP tablets.

The consultant endocrinologist I see agreed with my GP that I should go on thyroxine alone, regardless of my trying to explain how I was so much better on Armour, or even T3. But the most insulting of all was to be told that the consultant DOES prescribe T3 but only to patients who had moved into this area but who had been prescribed it by another consultant from the area they have come from. He took no regard to the fact that I had been prescribed it and taking it and feeling well on it for the past 5 years.

The new consultant was most sympathetic and is indeed concerned with how I feel, yet is only happy to start me off at 5mcg of T3 daily. Although he says he could well increase it when I see him next time, even if he puts it up to 10mcg it will hardly touch the surface and then I will have to wait months again. At 69 I do not want to spend months trying to get my health back again, I do not have months to lose just sitting around like a zombie.

Of late I have become very breathless. Again since stopping the Armour. I am not sure whether this is because of the extra weight I have put on or the thyroid. I am finding it painful to walk and my neck hurts when moving it. This has only manifest itself since stopping Armour. On mentioning this to GP I was told that I had arthritis in the neck.

I contacted the PCT to find out if there was a doctor I could change to who does prescribe T3 but they were no help whatsoever. In fact there must be a doctor who does because the consultant said he does prescribe it for other patients in the area. They put me on to PALS, who said a chemist would telephone me to discuss the matter and if he thought I needed T3 he would talk to my GP about it. A chemist!!!!! Anyway he never did phone.

Having already changed my doctor once and finding I have got out of the fat into the fire, I do not want to change again unless I can be sure the GP knows what he is about regarding the thyroid, or at least is prepared to treat me for other problems whilst I buy Armour myself.

In fact, whilst I was on Armour I didn’t have many other problems.

Just to let you know what this GP is like. I wanted to go on Lighter Life and they required the doctor to fill in a form and agree for a nurse to monitor my BP once a month. He filled in the form, charged me 30 for it, then wrote all over it that he is not prepared to monitor my BP and does not agree with it. When I asked him for my money back he refused saying that he had filled in the form
From Patient S
I have my own house, a loving partner, many friends and up until about 6 years ago I was hardly ever ill or under the weather in fact life was good.

Somehow though over the last 5-6 years I have felt my health decline, I started to feel tired all the time, feel terribly, terribly cold, I felt depressed all the time, my speech felt slow, I had frequent urine infections, I had very bad constipation, dry skin and hair etc, etc, I had no interest in anything, everything was just such an effort.

I decided to go and see my doctor to see if she could tell me why I should be feeling like this, she suggested that I have some blood tests done to check my general health but she felt that it was probably due to my age and my disability. The tests all came back normal, so I went away and decided to try and give myself a boost with some extra vitamins and minerals.

As time went on I felt that I was getting worse, I kept looking up my symptoms on the internet and under-active thyroid would come up so I went to see my doctor again. She listened to all my symptoms and agreed that they were the same as those for an under-active thyroid and agreed for me to have a blood test, these came back as being within the normal range. She added that she thought I was suffering from depression and offered me anti-depressants, I declined.

Over the next couple of years I started to have further problems, blurry vision, terrible brain fog, poor memory, sleep apnoea etc. All my doctor kept saying was that I was probably now going through the menopause and this was what was slowing my body down, again she suggested anti-depressants and this time I accepted the offer.

I tried the Prozac for 6 months hoping desperately that they would help but I felt no better so I stopped taking them. Life was just a misery, what was the point of living anymore.

Then last year I found your website and again started to think that I could have an under-active thyroid. Having realised that conventional blood tests aren’t always the best indicator I decided to pay for private saliva tests to see if they would show up anything different. At the same time I contacted Dr Peatfield at his Crawley office to see about making an appointment to meet with him. Sadly I was unable to meet with him as his Crawley office is not wheelchair accessible but he suggested that I send him copies of any tests that I had and he would look over them to see what he thought. I sent him copies of my last blood test from my G.P. and the saliva tests from The Red Apple Clinic. He wrote to me about a week later and told me that I had low adrenals and an under-active thyroid. He then suggested that I take Nutri-adrenal extra and that I should have a trial of Armour to see how I felt on it.

I decided to follow his suggestions and took the Nutri-adrenal extra for a month before starting on a 1/4 grain of Armour. I now buy Armour privately from the U.S.A. and over the last 6 months I have gradually increased my dose and I am now currently on 2 and a half grains a day. So far I have seen a slight improvement in myself though I still feel that I have a way to go. So there you are, that’s me!

I feel all very new to this and I am rather nervous about self prescribing so it is great to have contact with others who are doing the same. I am still very unsure of many things such as should I be retested now for my thyroid & adrenal levels or should I wait until I have upped the Armour some more? If now then what tests should I have done, which is best saliva or 24 hour urine? Also where is the best place to buy Armour from? Plus many more questions that I can’t think of at this point of time! Hopefully this will all become clearer in time.

From Patient J1
Since then I was first diagnosed with depression and now bipolar disorder. I have never felt completely well since the thyroidectomy and requested a referral to an endo a few years back to ask about T3. All he could say was that I wasnt taking my medication and they didnt test for T3. I have always taken my medication!

Now with the treatment for bipolar, I have been prescribed carbamazepine which affects the thyroxine. I was feeling very tired, sleeping all the time, brain fog, dry skin etc and with the blood test, my levels were wrong. Im now on my 3rd week of an increase in thyroxine to 200mcgs. Im slowly feeling slightly better, well, Im not sleeping all the time! My GP stated that he can keep upping the thyroxine if needed.

Im not happy about T3 being ignored so Im following this group to see if theres a way I can convince my GP to test.

From Patient Victim 009
(* sleep apnea can cause heart attacks and asleep-at-the-wheel car crashes but it is not usually thought of as life threatening, perhaps wrongly.)

Several decades ago I decided that I was the primary person responsible for my health and that I would use my knowledge and skill to keep myself healthy. I have a healthy diet, take exercise and don’t smoke, although I do like a drink. I take a lot of vitamins and other health products, often in megadoses where I think it the correct thing to do. I have always researched my medical conditions, and regard doctors and the NHS as Expert Advisers, rather than people who can dictate to me what I should do or medicines I should take.

Fortunately the GP practice that I have attended for thirty years has been receptive to my pro-active attittude to healthcare I was researching in medical libraries way before there was an internet, and coming to appointments with photocopies of medical papers before it became a common thing to do. Despite a few raised eyebrows, my GPs coped with this admirably.

I am fortunate enough to have worked in the media for a long time and support myself as a freelance writer it’s not well paid, but gives me enormous satisfaction and allows me the flexibility to research subjects that interest me, involve myself in the local community and environmental projects, and read plenty of books.

I expect we all recognise the interconnection between good physical health, good psychological health, and general well-being. If you are not firing on all cylinders – how are you going to be able to interact fully with your work, hobbies and most importantly with other people?

Unfortunately slowly-advancing conditions like Sleep Apnea or Hypothyroidism are like “boiling the frog” you don’t usually recognise the incremental deterioration till it becomes serious.

The medical profession, like all the sciences, has an “Existing Paradigm”, a set of conventional practices that are understood by all. There is far too much information around for any single individual to keep on top of it all so staying within the currentlydefined “norms” is the safest course for career professionals. Naturally the “norms” are redefined from time to time, and then the “New Paradigm” becomes the “Existing Paradigm”. (this is Kuhn’s theory of science, which I think is pretty valid). All sorts of other factors such as vested interests (e.g. pharmaceutical companies) and system inertia conspire to make progress slow, even when the existing paradigm has massive flaws, as it does with the non-prescription of Natural Thyroid Extract for Hypothyroidism.

My Sleep Apnea

Sleep apnea is heavy snoring when your airway closes, your body rouses itself partially from sleep, and you take a gulp of air, then fall back into deeper sleep if this happens hundreds of times a night you never get a proper nights rest.

When my sleep apnea was (eventually) diagnosed I bought myself a CPAP machine – it stops your airway closing by pumping in air at night; you have to wear a facemask. You can have a basic machine free on the NHS but there is a waiting list and I chose to get myself a state-of-the-art machine which would sense when I was having problems breathing and vary the pressure accordingly; it also recorded the results and I bought the PC software from the USA (the UK distributor refused to sell it to me as it was for “medical personnel only”) and kept track of my symptoms.

The first night I got a good uninterrrupted sleep I felt a million dollars the next day.

You may be surprised to find that you get rapidly used to having a mask on and it doesn’t stop you going to sleep! After a few years the inconvenience of having to have a small-vacuum-cleaner sized object beside my bed, and the mask on my face (which I customised), made me want a more permanent solution.

I researched various operations, which my excellent NHS Apnea consultant warned me were very invasive, painful, and often unsuccessful. I found a paper on Radioplasty, which is microwaving part of the back of your throat so it hardens up and doesn’t collapse when you are asleep; it was then very new, and so non-invasive that patients came in, had the 20 min procedure, then got sent home with a couple of neurophen. I found a paper by a Dr K based in Birmingham, and tracked him down; he returned my call in 5 minutes and we had a very refreshing discussion (I bet it didn’t hurt me saying, “Thanks for returning my call. I’m just reading your paper on Radiotherapy, it seems very positive.”). He was now based at the Royal National Throat Nose and Ear hospital in London. He was at that time probably the UK’s top expert in radioplasty, and also told me that he was using a German machine called a Celon, which was distinctly superior to the more well-known American machine (whose name escapes me). My apnea consultant referred me to him, saying that he felt much better sending me to someone on the NHS, rather than a private clinic which might be more interested in investigating my wallet than my medical needs!

After various sleep studies, Dr K and his team thought that laser treatment would be more successful than radioplasty for my particular problem. They warned me it was painful. I agreed to the treatment.

I hadn’t researched laseruvuloplasty, but I soon read on the internet forums how utterly painful it was, and how if it was supposed to be done in two stages (under full anaesthetic)- i.e they do a bit, let you recover, then finish off in a separate operation, many people refuse to have the second op. One woman on the forum said “It was more painful than childbirth”.

I felt somewhat daunted.

However I had often accelerated wound healing by using large doses of amino acid (protein) L-Arginine and Vitamin C; I think I first heard of this in Pearson and Shaw’s groundbreaking (if sometimes batty) Life Extension: A Practical Scientific Handbook in the 1980s. Over the years I have cleared up external injuries quickly, most nobably when I had ingrowing toenail surgery on both toes the chiropodists were amazed when they unwrapped the bandages, and found my toes had healed in about half the time normally required. “That’s the fastest healing I’ve ever seen”. I was in my mid-tolate thirties, so I’d outhealed much younger people.

I reasoned that if external injuries could heal fast, so could my throat. I got in a large stock of vitamin C, L-arginine capsules, and various other healing vitamins, mineral and herbs.

I had the first laser operation of two.

When I came round from the op, and was waiting for someone to come and take me home, the nurse came along and gave me boxes of four different painkillers, including some super-duper ones!

Oh s%&* I thought groggily.

I got home and was perking up as the anaesthetic wore off. On the kitchen wall was my schedule of dosage, which I started immediately. I planned to go up to about 12-16 grams of Arginine per day, plus Vitamin C to the Bowel Tolerance Limit. (Your body rejects excess C you have to run to the toilet! Normally mine is 3-4 grams per day in divided doses. During heavy illness I have taken up to 28 grams per day.)

I was told that I should start taking the weaker painkillers, then go up to the heavier ones where necessary as the pain wouldn’t really kick in for about 3-4 days.

Only it didn’t.

I had a sore throat, was eating normally as advised, and taking nurofen. I did take a couple of the 2nd most powerful at bedtime for a couple of days.

That was it. After about 10 days I stopped all the painkillers. I titrated down the dose of arginine and C and tailed it off after 3 weeks ish. Only side effect from the arginine and C was mild diarrhea.

I went back to see Dr K. He immediately asked about pain. I told him virtually none. He said, “We’ve done 1008 of these operations and only about five people have had no pain.” I explained what I had done and presented him with a log of what I had taken, when, and my observations, plus medical references.

He was intrigued and asked if he could use it for a research project, as it would be good for his students. I said I’d be glad to help in any capacity.

I had the second operation some time later. Same thing happened very little pain.

I saw another consultant afterwards the Registrar? I find these medical rankings horribly confusing. She was also impressed with my recovery and findings.

What happened? As far as I am aware nothing. It was outside the conventional paradigm so what I had done didn’t exist. It’s a kind of doublethink. This phenomenon is not confined to medical science. During the painful changes in photography over the last two decades, from manual control and film, to automated and digital, I have
seen the same reluctance to embrace the new paradigm, ignoring it, making illresearched statements about how it won’t work, etc, although this has been an easier change because there has been a strong commercial imperative to accept the innovations, however wedded one had been to the old way of doing things.

I had one more operation the Radioplasty to just finess the throat. Although they chose to do it under full anaesthetic, I came to and went with my “helper” to the pub as I was a bit groggy and needed to sit for a while, she wouldn’t let me have a pint! I felt well enough after an hour or two to go back on the bus by myself. Very noninvasive and unpainful, though my tongue felt curiously metallic for some months afterwards.

I was diagnosed now as being non-symptomatic of sleep apnea. I also recorded myself one night, and where I used to apparently snore “like a dying dinosaur” there was only the ticking of the clock.

Hypothyroidism

Several years have passed since my apnea has been cured. I still didn’t feel 100%. I feel the cold easily, particularly in my hands and feet. I often felt lethargic and mildly depressed. What upsets me most is when my creativity is numbed. I am a pretty positive individual. Over the years I have faced many challenges in the media. It’s very stressful but exhilarating.

I have come to rely on my imaginative solutions to problems. This is where I feel I am at my best.

One day something seems insoluble

I let my subconscious mull over it. Often I go to sleep and the solution is in my mind in the morning, as if by magic. Things pop into my mind when I least expect them.

This isn’t without difficulties. I am very untidy and chaotic this is the creative side of me; it needs to be balanced with the disciplined, (reasonably) organised side that does research, meets deadlines, phones people at a particular times, sends invoices, etc etc. These two aspects are in dynamic equilibrium, depending on particular
circumstances. Sometimes I am more effervescent, throwing out ideas; sometimes my methodical and systematic side is to the fore, making plans and ticking off checklists.

I did the basal temperature tests early last year, though I suspected I was hypothyroid before that, but the sleep apnea masked it. The difference when I started CPAP was so marked that I thought I was fully 100% but I was really only at about 85% of my best functioning.

Taking NTE from Thailand and NAX has definitely stepped me up a gear. I feel much more like I was in my thirties. Little daunts me. I feel I can take on any challenge and do a good job of it.

When the NTE ran out and I spent the last few days without it, I spiralled down rapidly.

I was OK in the mornings, but often felt tired in the afternoon, my hands and feet were markedly colder. I had three afternoon crashes where I had to go to bed. One happened when I had planned to create a simple one-page website for a personal project. In normal circumstances a doddle.

I felt so lethargic and numbed I couldn’t even make a start, even trying to summon all my willpower. I went to bed instead, mired in misery.

The next day, I woke up much better and polished it off in about 2 hours.

I am now back on the NTE and feeling much, much better.

You are the only person who really knows how you feel. You also know when you are unwell, and if you are getting better. Though there is the “placebo” effect, I personally doubt that it has any effect on your body temperature, which is regulated by systems outside our conscious, or even subconscious, control. When your thyroid gland is not functioning properly, all sorts of unpleasant health effects damage your functioning: physical, mental and spiritual/emotional.

This is pernicious. Hypothyroidism comes on so gradually that you don’t realise you’ve got it. Hence the gradual deterioration, compounded by the lack of knowledge and interest from the medical profession in diagnosing it promptly and effectively. We have to use the knowledge that is available now, and take control over our own health systems. I have done so, as well as many other people on this forum, and I would encourage you to do the same.

We also need to battle to overturn the existing paradigm and ensure that there is a place for NTE and more holistic diagnosing of the problem, from our doctors, rather than reliance on blood tests. That’s why I intend to push the NHS, or at least my local PCT/GP Practice to recognise this.

I hope this story serves to inspire other forum members.

 

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