Sheila’s Horror Story
Sheila before and after she discovered a natural solution to her thyroid disease
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.