Patients Stories – Some Patient Case Histories
From Patient GB
I was even told that “breast feeding is great for the baby but it doesnt half take it out of the mother”. About 6 years ago I began to feel that I was going down hill fast I couldnt concentrate or remember things, I felt sluggish, gained weight, my hair was falling out, I had infections one after the other, I couldnt sleep properly and felt dreadful my face was puffy and I didnt look or feel like me. I was told I was depressed and had 4 months off work ill. Then I was menopausal, getting older, still depressed. and now had fibromyalgia as an explanation for my severe aches and pains. My TSH was normal though by that time I had started to think that all my symptoms were related to my thyroid.
I found TPA UK and had my T3 and T4 checked they were low although my TSH was ‘normal’. I insisted on a referral to an endocrinologist and the GP agreed, under duress, and told me that my results were “still normal”. Fortunately and thank God, the endo agreed with me and started me on thyroxine, which at least saved me from losing my job. Im now treating myself with Armour as the endocrinologist is just going on my blood tests, but I still have severe aches and pains and difficulty sleeping. I will get there and I thank God, quite seriously, for the internet and for finding TPA-UK. Heaven help those who have no help and advice for the NHS is very poor at treating hypothyroidism. Left to my GP I am convinced I would be jobless, which means homeless and be completely cuckoo now!!
MY CASE HISTORY RE:- HYPOTHYROIDISM.
My name is Marie , I had a full thyroidectomy due to papillary cancer at the age of 30, approximately 20 years ago.
I can remember prior to the op, feeling pretty well considering and thinking that if what the consultant said was true, I would regain my optimum health and live until a ripe old age as thyroid replacement therapy (Thyroxine T4), would have me feeling right in no time.
How wrong he was!. Within 3 months of the thyroidectomy, when I should have really started picking up, I was feeling more lethargic, mentally depressed (due to my bodys inability to convert T4 efficiently into T3, which is essential for efficient brain function) and ultra tired all the time. I obviously discussed this with my doctor, who just said to give things more time and everything would come right.
Far from coming right, my health deteriorated further over the next few years, my weight increased to over 14 stone, an increase of around 3 stone from the time of the operation. I was snappy, depressed and even the slightest physical exertion such as climbing the stairs left me shattered.
My social life ceased to exist, as I had severe mental fog, which just made it too much effort to see people and have lengthy conversations. I was reprimanded fairly regularly as I was often late for work as I could never get going in the morning and was really going through a living hell in which sometimes, I wished I could just drop off to sleep and not wake up, as my day to day struggle to exist was just too much effort.
Consequently, the option of having a family was not really a consideration as I would never have coped mentally or physically as I didnt have enough energy for myself, never mind another human being and I was permanently mentally low due to non-conversion problems with the thyroid medication.
As far as my doctor was concerned, my blood tests were within the normal range, possibly borderline, but everything was fine, I was never offered a consultation with an endocrinologist, I didnt even know such people existed!.
Basically, Thyroxine was the only medication on offer, even when I changed doctors, the theory was identical.
I can honestly say that the best the Thyroxine did was to keep me alive, nothing more, nothing less, this gave me the chance to try and find alternative medication to get my health and life back on track.
When I was at a really low-ebb one January morning in 2007, I was on the Internet, researching a product call Armour Thyroid, when I came across the Thyroid Patient Advocacy and spoke in depth to its founder Sheila Turner, who advised me where to source the product and the necessary information with regard to taking it.
On starting taking this product, within a few weeks my sense of humour returned, my mental fog / depression had lifted and my energy was starting to return, my outlook was considerably rosier to say the least. It has taken me two and a half years to turn my besieged body around. I was told by Dr Barry Peatfield, a renowned thyroid specialist, that because of the number of years my body had been struggling to convert the T4 unsucessfully (approx 18), the receptors in the brain had been temporarily blunted and also my adrenal glands were also under extreme stress that essentially, I had to nurse my body back to good health.
My health is now pretty much restored, but how does one accept that some of the best years of my life (30-50), have been wasted by incompetent doctors and unsuitable medication, you have to be a strong person to accept this I can tell you. Ideally, my life would include children and possibly grandchildren, what price can you put on this?
In conclusion, I would state that my brush with cancer was far easier to cope with than the 18 years of torment that I have lived through with acute hypothyroidism, due to unsuitable medication and miss-informed doctors within the NHS in general, that is food for thought!.
Thank goodness for Natural Thyroid Extract and TPA UK, they have given me back A LIFE WORTH LIVING, for which I will always be eternally grateful.
My energy was boundless before the birth of my second child. I had no known family members that were hypothyroid only maybe my great grandma had an early death from diabetes, which could have been related. My Mum was diagnosed a long time after me, when I notice she had a lump on her thyroid.
I started to notice things werent right in 1990 when my hair started falling out big time and people kept saying have you shaved you eye brows? My weight was going from one extreme to another. I had sunk in to very awful depression, my feelings went so numb and I was really convinced every one would be better off without me. I was sinking deeper in to depression but I had no idea then, you just think thats the way you are. My 10 year relationship broke down as well as my young family. My daughter went to live with her dad because I couldnt cope with 2 children on my own and it would be best for her. My son was 6 years older than my daughter and a lot more independent. So it was easier for me to look after him. I had to live with all the judgements from others as well as being very extremely hard on my self about my daughter living with her dad. The pain and shame from this was so unbearable. It hasnt occurred to me as this point I may be ill. I then went completely off the rails and was heading for a breakdown. My energy went crazy, I couldnt stop, it was like having your foot to the floor on the car aerator pedal. I was so tired, but I couldnt stop. I was also just skin and bone. I had got to point where being dead would have been easier . I had none one to tell me that this might mean I need help.
I finally went to the doctors and they said I had depression and gave me anti depressants, they didnt do a thing after trying them for a year. I kept going back to the doctors because I didnt feel well at all and they said they couldnt find anything wrong. I had to work part time and get jobs that didnt need much brain power or energy because I couldnt think properly and keep up. I felt in a constant fog. Part- time work eventually started to be was too much. Even people talking more than two minutes drained me. I thought I had Alzheimer’s as I couldnt follow anything people were saying. I was so cold and my work colleagues used to say it not that cold with all my jumpers and coats on. Life felt like a up hill struggle in a leaded space suit. My grandma who was 90 had more energy than me and I was only 36 years old.
My periods were so excruciating painful, I had to take a week off work every month. My work became a struggle, by the afternoon I would feel and look like I was dying. One day at my yoga class, I couldnt get up of the mat, I felt ill in every cell in of my body and I was painfully ice cold as if I had been lying in a cold sea in February in England. I started to sleep 18 hrs plus a day and found that I couldnt get out of sleep even though my mind was sometimes awake. I could hear my body in deep sleep breathing deeply, but I could not wake my body up physically. This was a scary experience, I felt like I was slipping in to a coma or that how would imagine what its like.
I couldnt work any more.
Finally a doctor said lets check your thyroid after 15 years and finally I got called to the surgery urgently about my results. The doc looked shocked when she saw the results. I burst in to tears, I had a diagnoses and I was going to live. Horary I thought I could get better now.
The doctors put me on t4 medication and I real had hope. I did feel slightly better, but I still couldnt work or have much of a life, I was tired and not able to exercise at all without putting myself in bed for a week. I upped my thyroid t4 meds over a 5 years period to 200mg. I couldnt tolerate anymore t4 meds and my doctor told me to ignore my palpitation and just put the t4 up. I knew that this was a bad advice for my body and felt this would probery kill me off. That was the end of my trust in the medical profession .Thats when I took control of my own health. I was lucky to have a husband whom was totally there for me physically and financially. I dont know how I would of coped on my own. I couldnt stand up for more than few minutes at times, I tried t4 meds for 5 years and felt rubbish. I went to see private specialist endocrinologists because I was getting nowhere in the N.H.S, he ended up being just as useless and later got me diagnosed with chronic fatigue syndrome (C.F.S). I knew it was my thyroid, but they said it was fine. I put on 2 and a half stone on t4 medication only.
I trawled the net when I could muster up the energy trying to find out what was wrong with me, it became a bit of obsession, but I was determined to get my life back. I finally found the site Stop the Thyroid Madness and later the Thyroid Patient Advocacy and educated myself with as much information as possible. This is not easy when you are extremely tired and have no concentration.
I finally took the plunge February 2008 and started to treat my self with armour thyroid and later 20mg of hydrocortisone for low adrenals. This was a massive step for me. Within a couple of weeks on armour thyroid, my body temperature went from 35.1c to 37c. The colour in face came back and I had healthy rosie cheeks for the first time in 18 years. People started to notice that I was losing weight. I have lost over a stone and a half in 9 months without trying. I have started my own business since being on natural thyroid hormone and no longer need state benefits. My confidence is coming back and I feel nearly like my old self again. However I am not sure what that was its been so long. I had forgotten what it was like to feel light and healthy. I would have given my health a 0 out of 10 a few years ago. I now give it a 8 out of 10 . I just still have brain fog a little, but I was ill for 18 years, I think it will take a bit more time to be 10 out of 10.
Natural thyroid hormone was the best decision I made. With the support of lovely Doc I can now help my 18 year old daughter because she became hypothyroid during puberty and N.H.S doctors refused to help her because of borderline and sometimes over the borderline on the T.S.H and T4 tests although she had very high antibodies and very obvious symptoms and a family history My daughter would have been diagnosed in a America and Germany, She now is happy and well on natural thyroid hormone too. I am so glad that she wont ever go through what I did
I have been suffering fatigue for many years and did not understand why, I was recently diagnosed with ME/CFS which pushed me into carrying out internet research which is of course only available to those who are internet aware.
When I went to my doctor with the ever increasing fatigue last year he said, ” 90% of my patients are tired” It was only because the daughter of my friend was a doctor at the same practice, I found a sympathetic ear who sent me to a rheumatologist which lead to my ME/CFS diagnosis. This of course has lead to me being referred to the ME clinic with a current 40 week waiting list just to receive CBT.
I was very fortunate to come into contact with a nutritionalist who is a Fibromyalgia sufferer who has helped me get private Thyroid and Adrenal Tests done, the result of which I am now taking Hydrocortisone purchased privately from the internet. Suddenly I feel better than I have for 20 years, the results are fantastic even though I have only been on this medication for a couple of weeks and of course I will have to pay for retesting of both Adrenals and Thyroid before I commence any Thyroid treatment.
This is of course all at my own expense and while I am fortunate (and desperate) enough to afford it there must be many thousands out there who not only cannot afford it but because of the scandalous ignorance of the NHS do not even know that they need it. We have at least 6 friends and family who all fall within this diagnosis. The problem must be absolutely huge. it seems to me that we are deliberately and calculatingly being kept unwell in order to save the national purse. It is a disgrace. you of course have my permission and if there is any specific data you require please do not hesitate to ask.
My partner Peter had some dealings with human rights issues although not medical and he feels very strongly this could be a Human Rights hot potato, And it was only last week that we were discussing how we could be active in bringing this to a higher profile. If therefore we can be of any assistance please let us know.
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 shiny. 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. I had started to have bowel trouble. He asked me to write down my bowel movements, which were several days constipation then diarrhea. He sent me to a consultant at the hospital who said he cold nto see anything wrong but would arrange for me to have a barium enema, or some kind of investigation. I was told I had diverticular disease. Incidentally several years later having had a colonoscopy it was found that I did not have this at all. 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 anemia.
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. He should have been spending those 10 minutes on trying to find out what was wrong with me.
This doctor arranged 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. So much so that every day living just happened without any problems. I had forgotten about bowel problems, numbness in hands and arms, feeling tired all the time. I just lived, had a good quality of life, went out with friends, and went on holiday. Feeling ill was not an issue. I was able to control my blood sugar better, I had more enthusiasm for things, could plan ahead, did the everyday things in life without a thought. 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. I was alive.
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. He insisted that I was overmedicated and because my TSH was 0.01 I was hyper. He would not listen when I explained that T3 does make the TSH low but if he looked at the FreeT4 and FreeT3 he will see that they are well within their ranges and not only did that show I was not hyper I did not have any hyper symptoms. In fact from a list of symptoms the BTA say are hyper I had most of these when I was hypo, and if my GP said I was hyper why was I not getting those symptoms then. But I did what he requested because he said he would no longer be my doctor if I did not.
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. Since stopping the Armour which contains T3 my blood pressure went up and I was prescribed more pills for this.
I was constantly thinking of my health, because I was now constantly being bombarded with health problems. Pain on walking, severe breathlessness, starting to fall asleep all the time during the day but still sleeping all night. Constipation and diarrhea so bad I dreaded making an appointment for anything. For the first time ever I had to miss an appointment with the dentist because as I was walking out of the door to keep the appointment the diarrhea started. I gave up on entertainments, tickets for theatre etc. because I lost so much money having to give them away at the last minute. I was no longer living a proper life anymore. I felt I may as well be dead. All I could do was sit and watch TV all day, not even being able to move from the living room to the kitchen without being severely out of breath and in pain. If I got the energy to make myself a cup of tea I didnt have any energy left to drink it.
The GP told me that my tiredness could be Sleep Apnea so sent me to a sleep clinic.
I would have thought that had my tiredness during the day been due to sleep apnea it would have been like that during the 5 years I was on T3 or Armour and that it was due to not being medicated properly. In my opinion although weight can be the direct cause of sleep apnea, it was the reduction of proper thyroid medication that caused the weight to be gained so indirectly caused the sleep apnea. The results were that I had it very mildly, which would not account for such severe sleepiness. Later it was found that I didnt need the mask after all. It was causing me more problems than it was meant to solve and, as I was again being medicated better, there was no sleepiness in the day at all.
My cholesterol went down to about 4.2, when taking the Armour and went up to 5.3 when it was stopped. If I took statins it would be just another plaster over a symptom which I wold not need with the correct medication for the thyroid. Yet another expense and another pill not necessary when thyroid is treated properly. 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, whereas when I was taking the Armour my blood pressure was well controlled on a much smaller dose of BP tablets.
The hospital doctor 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.
I saw a new consultant in November who prescribed some T3 but only 5mcg, however he increased it to 10mcg a day and exactly one month afterwards there was an immediate improvement, firstly with the most distressing symptoms. The IBS symptoms stopped completely and my bowel movements became so normal that I no longer have to consider this when making plans, appointments etc. Another distressing thing was that my hair stopped falling out. I would wake up in the morning and find hair all over the pillow and my face, this does not happen now. No numbness in my hands and arms.
I was no longer tired during the day, so much so that the sleep clinic said that there was no point in continuing and discharged me.
I was then told I do not need one of the blood pressure pills and my severe breathlessness which was completely debilitating eased. The blood pressure pill that was increased at the time the Armour stopped.
The doctor quoted me a list of symptoms which I could get if I were hyper. He considered because of the TSH that I was hyper. Yet I did not have any of those symptoms. Some of them I had when I was very hypo though. Another curious thing is that the GP was so concerned about these hyper symptoms I might get, one of them being severe breathlessness, yet when my TSH rose to within the range, when I complained of severe breathlessness he dismissed it and did nothing about it or investigate it.
When I stopped the BP pills the severe breathlessness went. So a whole year of my life has been completely and utterly wasted, and at 69 and being diabetic, this is rather cruel. I was about to get a wheel chair because I could not move more than a couple of feet without having to sit down again to get my breath. The excessive BP pills might be directly the cause of the breathlessness, but stopping the Armour was the indirect cause of it.
I complained about pain in my back and was prescribed pain killers, to take when necessary. Considering, as a diabetic and someone with high blood pressure, excessive painkillers would not be very good. Yet the doctor is quite prepared to allow this.
So everything else the GP is prepared to prescribe to excess, regardless of the consequences, yet I was told to stop the Armour or T3 because of the perceived consequences.
A person does not normally walk around thinking about their knees all the time, unless their knees are extremely painful and causing them a problem, then they are constantly aware of them.
This is how it has been with me and my thyroid condition. When I am being medicated properly I am unaware of my body or that I am feeling OK and everything is working OK, but as soon as I am not medicated properly I am aware of every part of my body, because every part of my body is affected in one way or another. So, whilst being medicated properly I tend to forget all the horrible things that happen when I am not. Just like you forget a horrible toothache when it has been sorted. So there may be things I have forgotten.
I know after the birth of my second child I was ill. My GP (nice man, old school) told me I had a hormone imbalance but as I was a sensible women I would be fine. I turn to a herbalist on the market in Stockport who advised me and it helped a little. The next 6 years were difficult, I felt so ill. Fortunately I didn’t have to work and spend my time looking after my children, my husband and my home as best I could but it was a struggle.
I went many times to the doctor at my practice with lists of symptoms but maybe I didn’t explain myself very well but not one of them pick up on any of my symptoms. One GP told me she didn’t have time to look at my list of problems, if she had she would have seen classic hypothyroid symptoms. Not once did any GP do any thyroid tests.
I had been under the care of St Marys Women’s hospital for many years with gynecological problems and in late 1993 a young doctor there asked if I had ever had my thyroid checked. He couldn’t believe I hadn’t. I didn’t know anything about the thyroid or what it did.
I had a blood test that day at the hospital. Went to a friend house who had a medical book on the way home and looked it up. There were the symptoms on my list that my GP couldn’t be bothered to discuss. At last I thought an answer but no. I went to my GP to see if the blood results had been sent to her ( how long did blood tests take in those days) but they hadn’t. The GP adamantly told me I wasnt hypothyroid she could tell by looking at me. I had no fight in me I just took what she said and when the blood result came through I was in range and therefore not hypothyroid.
The following 6 months were terrible as I got sicker and sicker by the time my daughters’ 6th birthday arrived I could barely function. I took the children to school in the car as I couldn’t make the short walk and came home and just sat down. I caught a bad cold but it felt like the flu and I couldn’t recover. Back to the same GP to be told I was depressed and need to be more assertive with my husband. All I could think was I going to be so ill now and divorced. Somewhere came the strength to say no I’m not depressed I’m ill, I feel low because I am so ill I can’t function. Ok Blood tests. Two weeks later back to see the same GP she flung the results across the table to me and said ‘There that’s what you problem is’, No apology, no explanation. I think she even resented I woulds now have free prescriptions. Thyroxine prescribed.
What I don’t understand is I’m a nice person (even if I say so myself) and had never been rude to anyone at the medical centre. I never made a fuss (maybe thats the mistake I made), the reception staff knew me well and we had a good relationship. So why was this doctor so offhand and disrespectful to me. I gone to her for medical advise and care and I didn’t get either.
Hypothyroidism is an illness that makes it very hard to put up and fight and get the GP to listen and I probably sounded a bit pathetic and would have been weepy so I understand how depression could be diagnosed but it shouldn’t be the first thought and tests should be done.We go the the GP because we don’t know whats wrong with us they are supposed to be trained.
Fast forward by 10 years and I starting to struggle again, old hypo symptoms are coming back and the weight is piling on. I struggle on maybe it’s menopausal ,maybe it just my age. I’ve lost my Dad and I’m caring for my mother so maybe it’s stress, bereavement, I have no time to think about my own health. Thyroid blood tests show nothing and I just keep going for another 4 years until by some coincidence I find out about Dr Peatfield and read his book. Not sure if I can do this myself then I find TPA forum and I have the help I need. I haven’t approached my GP about any alternative to levothyroxine and as my local health authority only test TSH my GP wouldn’t know if I am converting T4 to T3.
I would like to get Armour or even T3 on the NHS. Now I am recovering self treating with Armour I can now see how ill I had become again. If I had to go back to Levothyroxine I would just slip into total ill health again and I wouldn’t be able to function. I don’t like the thought of that all but I don’t know if I will always be able to afford Armour.
Maybe I should approach my GP see what she says, I just wasn’t up to fighting again before I changed to Armour.
By the way I moved a long time ago to a different medical centre with different doctors.
I have only just been to see Dr Peatfield and been prescribed glandulars for both thyroid and adrenals. He empowered me to treat my sister who came with me to take notes, my 72 year old mother (he saw her photo) and my 17 year old daughter. I am not sure that glandulars are the same as T3/T4 but if they are I am prepared to give a blog, assistance or whatever.
I don’t yet know that they will work but I feel they will. He inspired me with confidence and recognised my symptoms and signs. Yet my TSH is within range, as are all my family. My mother has had at least 35 years of being untreated. has a temp of 35.0 and is waiting to see if me and my sister improve before trying. I can understand her fears.
I won’t be disappointed if you don’t use me but the offer is there if you want a whole family who have suffered.
Yes that shouldn’t be a problem. I’ve been to court to give evidence before, when I was 17. I saw two youths attack a policeman and the barrister tried his best to twist my words. I stuck to my guns and they were convicted. I also understand medical terminology fairly well as I translate medical reports and have worked for a private medical insurance company for the past 4 years,
I will have to sit down and have a think as this has been going on for over 3 years now. My GP’s more or less implied that it was in my head and after much fighting eventually agreed to refer me to see an endocrinologist (probably only because it was privately, otherwise I don’t think this would have happened). The endo then agreed with me that I did have hypothyroidism.
Then I had problems with thyroxine and after telling him I had seen Dr P and that I had switched to Armour he was OK to monitor me. We had lots of arguments about adrenal fatigue etc. He’s said he is quite happy to prescribe me Armour privately but won’t on the NHS due to the RCP. He seems like a really nice man and has tried to be as helpful as he can, but I think he has his hands tied by the powers that be. There is definitely a hidden agenda going on at the moment. My older sister thinks it another attempt to subjugate the masses. After all if we are ill, depressed and worrying about getting better then our attention is drawn away from any corruption etc.
I was given copies of the blood tests and a medical report each time I had a consultation and am happy for you to have copies of these. I’m currently suffering from severe ME/CFS and have experienced similar problems with the NHS with regards to getting treatent and have had to go down the private route as my GP’s have left me to deal with it by myself. If you need any help in translating foreign research papers etc, then let me know. When I was well enough to work I used to make a note of the reference ranges and blood test results of hypothyroidism patients abroad. In many countries people are diagnosed with hypothyroidism with TSH levels which are alot lower than what would be considered normal in this country.
I have suffered from anxiety and depression previously, although I think part of that was may have been down to my thyroid, My GP’s keep on trying to give me them when I don’t need them. The rest of it was down to a serious of quite traumatic events throughout my childhood and early twenties. I may feel fed up sometimes at the fact that I have been ill for over 3 years now and have had virtually no help to get better. In spite of everything I am a very positive person nowadays and so am not worried about the fact that they may try and twist my words in court. If there’s one thing life has taught me, it is that you need to stand up for yourself and other people if you are being mistreated, because if you don’t they will continue to walk all over you.
I’ll try and write my story over the next few days and if there’s any additional info or help you need then please let me know.
The consultant, Dr B***** in Colchester, hurt me by his contemptuous attitude. When I met him, he didn’t introduce himself. I said ‘are you Dr Bodmer’ and reached out to shake his hand, as you do. But he backed away as though unwilling to touch me. Normally private consultations are done politely, but not him.
His opinion was ‘all your problems are due to your weight. Once people get to your size they have no possibility of losing it. Your only future is gastric surgery.’
He soon asked me to come to the reception desk with him to arrange the tests. This was his way of getting me out of the consulting room quickly. Once at the desk he began a conversation with the next patient due in, a man with whom he appeared extremely polite and friendly (in contrast to me). I then gathered my time was up, and made a point of saying goodbye to him. He once again irritatedly backed away. I paid 7 per minute for this disappointing consultation.
Marianne Cs story
History: Mother was diagnosed in the 1970’s with hyperthyroidism and received RAI treatment and tablets. Cousin in Ireland had a goitre. 1st Cousin with Lupus, scleroderma and raynauds syndrome and one with diabetes type 2. (on my fathers side) 1st cousin died of liver cancer.
Father: Always fainting. Suffered with hypoglycaemia and atrial fibrillation. Diagnosed in 1990’s with emphasymia. Died March 21st 2005 supposedly of this but actually contacted C diff in hospital resulting in his death
Myself: severe tonsillitis as a child. Always on antibiotics. Always sick with viruses and gastroenteritis. Diagnosed with scoliosis aged 12. Very susceptible to viruses and flu. Went through a long period from aged 7 of fainting attacks which stopped in my teens. Very nervous and anxious child. Very thin with eating problems. Started periods aged 12. Always very heavy with clots and very painful.
1982 aged 19) Got married. Started feeling Very tired on and off and used to sleep on train on way to work.
!984 aged 21)
Developed a swelling in my neck.
1990: (Aged 27)
Gave birth to my first child. Had a difficult birth and was never the same afterwards with depression, low self esteem, weight loss, panicky, tearfulness and anxiety. Extremely tired all the time. Visited the doctors many times complaining. Was given anti depressants for post natal depression. Returned to work part time for RBS after maternity leave.
1991/2 (Aged 29)
Lots of panic attacks, tearfulness, feeling of a lump in my throat which caused me to be unable to swallow. Weight loss. Went to the doctors who said they were worried that I had a tumour in my throat (thyroid was not mentioned) and sent me for an ultrasound scan of my throat. (had a RAI injection so that the thyroid could be seen even though I had a 2 yr old toddler)
This carried on for some time. I became depressed and was sent to a psychiatrist as well as being prescribed anti depressants. Collapsed one day with extremely fast heart rate, all over numbness and complete inability to move. Couldn’t swallow. Was diagnosed with Globus hystericus and told I was “burnt out”
1993 (aged 30)
Gave birth to my second child.
After the birth I was unwell. Experienced severe anxiety, bartholins abcess, weight loss, exhaustion which continued for some time. Still had neck swelling which was very pronounced. Started getting severe migraines and visual disturbances which were so bad I couldn’t see for periods of around 30 minutes at a time. These could be described as sparkling diamonds in a half moon shape in front of one eye which started very small and then built up until vision was totally obscured.
1995: I was so tired all the time that I kept falling asleep. Started putting on weight even though I ate virtually nothing. I had always been very thin, so was mystified by this. Hair coming out in handfuls.
1997. Was still unwell. Still experiencing panic attacks and anxiety. Developed an obsession that someone was going to take my two children and was over concerned all the time about their safety. Was always so tired I could hardly stand. Was neurotic and anxious. Very low libido causing rows with my husband. Couldn’t cook or do housework because I was so tired. Became pregnant with my 3rd child.
Suffered a miscarriage June 21st 1997.(7 weeks) Was very traumatised. Blood loss lasted around 2 months. Could hardly stand with exhaustion. Went on holiday (Jul Aug 1997) and spent most of the holiday asleep. Couldn’t walk anywhere as was too weak and tired.
!997: Became pregnant with my 4th child. Was obsessed that I would lose the baby and was constantly at the hospital having scans to “make sure she was still there” Had a scan which stated that she had a chance of being downs syndrome. (measured baby’s neck?)
Developed high blood pressure and gestational diabetes. A very anxious pregnancy. Very managed birth. Baby girl born June 1998 with no problems. Health deteriorated again afterwards. Became extremely clumsy and anxious and tired to the point of complete exhaustion. Was always freezing cold, migraines, constipation, digestive problems, nausea. Given anti depressants again. Developed breathless. This caused more anxiety as I kept waking at night out of breath. Returned to doctor and was sent to Ashtma clinic
1998. Doctor tested my lung function which was fine. She examined me and asked me about my thyroid. I had nothing to tell her as nothing had ever been diagnosed. She made an appointment for me to return to her clinic for a few hours to have special blood tests which were taken every few hours. She told me she suspected hyperthyroidism.
When the results were through, she transferred me to the endocrine clinic who diagnosed Hashimotos disease and I was discharged. Nothing was explained to me and I was not told what Hashimotos disease was. Felt ill all the time. Mother went into hospital for triple bypass. I became more ill. Had to take sick leave and could never return to the bank. Remained on long term sick leave.
Continued to feel ill. Started to feel faint again all the time. Went through periods of complete personality changes. Libido very poor and constantly neurotic resulting in marriage break up in 2000. Periods very heavy and painful to the point of disability. Started having cold sweats on and off and being sick. Hair falling out, exhaustion. Given anti depressants again.
2001. Suddenly felt ok for a long while. Developed severe abdominal pain, constipation, feeling tired. Skin very “grey and pale. Always extremely oily and you could actually see beads of oil on my skin. Weight loss, poor appetite, anxiety.
2002. Met my second husband. Started becoming neurotic again with obsessive behaviour. Actually felt as though I was going mad. Gained weight again. (around a stone and a half) Could never get warm and spent most of my time sitting on the radiators to get warm. Always tired to the point of exhaustion. Started worrying that this marriage would end too. Constantly in pain in lower back and muscles.
My father became very ill and spent a lot of time in and out of hospital.
Offically retred from the bank through ill health 2003.
2005. My father admitted to hospital. I started having unexplained severe diarhoea which continued for around 3 weeks without stopping. Doctor took a stool sample which came back negative.
My father died March 2005. I suffered severe trauma as a result. Put on anti depressants again.
January 2006. Became very ill. Couldn’t walk because I was so weak. Migraines and visual disturbances very severe. Went back to doctors who took blood tests. I was telephoned to go to see doctor who said thyroid antibody levels were very high. Wasn’t sure what this meant. Given 25mcg levothyroxine and referred to endocrine unit to see the same doctor I had seen in 1998/9. Had a reaction to either the thyroxine or the fluoxetine as I was taking both. Had to lie on the sofa with extremely fast heart rate, nausea and felt very scared. Asked doctor if they reacted with eachother and she said no. I told her I was stopping the fluoxetine.
Attended endocrine unit (Doctor Rodin at St Helier) and was told to up the tablets to 50mcg and then discharged back to the care of the GP. Nothing explained. Some symptoms started to pass. Depression and migraines went away for the first time ever. Still expremely tired and exhausted and very weak.
Levothyroxine upped to 75mcg. More symptoms started to go and felt much better. Tiredness remained. Thyroxine raised to 100mcg. Finally many symptoms started to go and as the months went on, gained energy and felt genuinely happy for the first time in my life. No anxiety, tiredness much better. Started investigating my condition on the internet and was shocked. Built a website about thyroid and scoliosis. Found lots of other websites the same
2007/8. Started feeling unwell again. Severe muscle and joint pain, constipation, weakness tiredness vaginal thrush and thrush in mouth, stomach bloating, nausea and alawya felt dizzy especially when getting up in the night to go to the toilet, getting out of bed in the morning, or standing up after being seated for a while. Felt dizzy when stressed or out shopping and felt incapacitated by it.
Developed central chest pain and had to go to casualty who told me heart was fine. Realised T4 was building up to toxic levels. Also realised I had weak adrenals and probably had since childhood. (like my father) Was told I had chronic fatigue syndrome by doctor. Attended Mr Lam’s clinic at Guys for scheduled scoliosis surgery. Could not have the surgery due to ill health. He referred me to endocrine unit at St Thomas’s. I asked about Armour thyroid and T3 as an option and they said there was no proof it worked and dismissed it. I explained that I was unwell and that the thyroxine started off by making me well and that I was deteriorating again. I didn’t want my second marriage to fail because of my thyroid. I had 3 children who had been affected by my illness. I couldn’t enjoy family outings because I couldn’t stay awake on days out or walk very far. I was brain fogged, confused, poor concentration with a head full of cotton wool. Although depression had gone, I was often tearful and anxious. I can safely say the depression was the thyroid all along as this debilitating condition has never returned. However, I spent years on antidepressants needlessly and seeing psychiatrists when all the time I could have been on thyroid meds.
Asked about Armour thyroid and was told they had never heard of it.
Joined a fibromyalgia group “Tried and Tested project” with Caroline ‘Hinkes. Continued research into thyroid/adrenal illness. Found doctors just didn’t seem to know anything about thyroid illness, especially the endo doctors who only specialised in diabetes.
2008/9 Continued to feel muscle and joint pain and tiredness as well as insomnia, night sweats severe brain fog and confusion, and chest pain, felt nothing was ever going to sort itself out. Decided to try Armour myself and purchased it from U.S. Started to self treat. Felt very well on the Armour at first. Kept raising the dose, but then started getting chest pain again. Worked out (through internet) that adrenal fatigue/candida etc can cause problems with thyroid meds. Stopped the medication. Contacted a private doctor who knew about the problem but finances stopped me pursuing this. Asked doctor about low cortisol and explained my continued dilemma. Tried Armour again at low dose (1/4 grain) which was fine for around 10/12 days, then husband had to get an ambulance because of my chest pain.
This is a continuing problem. Here I am, on no thyroid medication at all now. Just had blood tests again and await results. Still ill. Still suffering. Having to self treat with nutritional supplements which have helped but not the answer. Cant take ANY thyroid medication for fear of having a heart attack. Doctor doesn’t know what to do either. Have severe muscle and joint pain, flare ups that last weeks where I can’t walk. Weakness, unexplained sudden bouts of overwhelming tiredness that comes on suddenly and I have to lie down, sometime sleeping for 14 hours continuously. Need help in the night to go to the toilet in case I fall over. Have lost loads of weight.
Incidentally, my mother is still ill with hypothyroid symptoms but of course, her blood tests come back normal. She has been fitted with a pacemaker but the symptoms still continue despite the pacemaker, so this is obviously not her heart. She is always cold, exhausted severe muscle and joint pain and experiences strange turns. Regardless of her age, her symptoms are identical to mine, but no one will look into the thyroid even though they are aware of her history because her blood tests come back in range. Her FT4 is 11.4?????? TSH 1.7
This is my story.