The biggest fauxpas in medical history - Thyroid UK

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The biggest fauxpas in medical history

So says Diane Holmes, she was misdiagnosed six times and treated for illnesses she did not have. She was so ill she eventually ended up in a wheelchair .After 23 years she was recommended by a friend to see dr Durant Peatfield . He immediately diagnosed her with hypothyroidism and prescribed thyroid hormone replacement ,within weeks she became well and symptom free. As her thyroid blood tests always came back from the lab , normal hypothyroidism was ruled out. This happens time and time again gps clinicians endocrinologists seem to ignore symptoms and rely only on blood tests . Diane’s book “Tears behind closed doors’ was the incentive for me to find a doctor who would ignore normal blood tests and diagnose by symptoms. I did eventually and was prescribed thyroxine within weeks I was 50% better . I still had many symptoms which thyroxine did not cure but 50% better I could live with My tale of woe lasted for 19 years before I was diagnosed with hashimotos but still not allowed T3 or NDT I still had many symptoms , after reading and researching I decided to self medicate my choice was thyrogold ( dr John Lowe) ,Of course I wasn’t sure if this would help me but I had read really good reports and as fellow sufferers know when you have felt so ill for so long you will try anything that might help . Result was amazing , within weeks I was almost symptom free , I still get the odd flares because of the autoimmune disease But I can happily live with that . Yes, as Diane states “the biggest fauxpas in medical history is misdiagnosis of hypothyroidism”

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Hi

How are you feeling?

It's unbelievable isn't it? I've got quite a few conditions which have took so long to diagnose because for one many drs don't listen to us!!! Love and hugs Lynne xxxx

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Yes for years , before blood tests were used to diagnose , doctors listened to the patients and would prescribe natural thyroid hormone ,which was the only medication available , if this helped and symptoms disappeared they were given it for life , over the years I have been sent out of the surgery with a flea in my ear , I’ve been shouted at told “ there is nothing wrong with you , it’s all in your head , you’re imagining things and you’re just depressed.” Endocrinologists have been very intimidating told me “ your thyroid blood tests are normal this proves there is nothing wrong with your thyroid .it took me 19 years to be given a thyroid scan which showed my thyroid gland was shrinking and inflamed , diagnosis hashimotos. Even then I was only allowed to have thyroxine and tho it helped by about 50% I was told no can’t try T3 or NDT . As I said thyrogold worked wonders for me obviously won’t work for everyone we are all different . Best wishes jay

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Yes I was offered cognitive behavioural therapy at a clinic some thirty miles from home... like thinking differently would have an effect...

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A travesty!

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Even my best friend of 60 years says " You blame everything on your thyroid problem", when I casually wonder if this or that new symptom is to do with my Hashimotos and I struggle like you to get relief.

I told her every cell is ruled by the thyroid. 😀

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I have had the same reaction from family and friends .” You’re obsessed with thyroid , tests and doctors say nothing wrong with your gland “ they used to glaze over when I mentioned it not a lot of sympathy . As it turned out most of my symptoms were caused by thyroid disease and the list was long , best wishes jay

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Very interesting. Once you have reached the correct maintenance levothyroxine, anyone know if you can still show symptoms of underactivd thyroid, as you don’t get given TS3 and 4? Thanks

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Blood test results returning from the lab normal , quite honestly means very little ,if you are still having symptoms !!If you have hashimotos bloods will very often come back normal which means doctors will dismiss hypothyroidism .have you been tested for antibodies or had a thyroid scan ?? Most GP s and endocrinologists will not prescribe T3 or NDT ,is it to do with money and the cost ?? Perhaps, but it is sold in other countries quite cheaply . Hashimotos is the biggest cause of hypothyroidism try and insist on tests for it. Don’t be like many of us suffering for years because the TSH test (which is supposed to be the gold standard test )is normal . Even the doctor/researcher who developed the TSH test says “ do not rely on it diagnose by symptoms and temperature” good luck

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I was just wondering what your symptoms were Jaybrooke after reading your post? I keep having blood tests and they always say they are fine but I wake up sweating and haven't felt well for so long, very tired all the time. I always ask for them to test my Thyroid but never get to the bottom of it all. I often wonder if it's my thyroid but I have other issues so the water gets muddied and it's hard to get doctor's to listen.

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If you obtain copies of your test results with ranges and post in a new post - members will comment and help ... 😊

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Thanks very much Marz, I will try and get my results printed out.

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Hashimotos is the biggest cause of hypothyroidism or so I have read , researchers (dr skinner dr Lowe dr peatfield dr Derry) . Thyroid blood tests will come back normal until your gland is so damaged or destroyed completely, leading doctors to dismiss hypothyroidism and we are left to suffer the most awful symptoms . I was told “you have CFS/ME and fibromyalgia. I would say find a doctor who will give a trial of thyroxine starting on a low dose . Dr Gordon skinner treat many hundreds of patients diagnosed by their GP s with fibromyalgia. He prescribed thyroxine he said cannot harm the patient start low and build up till symptoms go and cheap as chips .he has hundreds of grateful patients who are now well.jay

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Everyone is different so symptoms vary from patient to patient I had the works , inner tremors palpitations,thudding heart numbness in legs and feet, foggy brain, lack of concentration , dizziness, pain in joints and muscles, dry hair nails skin, and dreadful fatigue

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Thanks Jaybrooke, I'm going try and get my results printed out.

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pump321

Looking at your other posts......many hypothyroid related symptoms stand out .....migraine, IBS, vitamin deficiencies,

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

You can also have Hashimoto's and never have raised antibodies. An ultrasound scan of thyroid can be helpful

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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Thank you SlowDragon for your reply and going to so much trouble to help me. I will read all your links and I'm going to try and get a printout of my blood tests I had done recently. I had the blood test done early but wasn't told to fast so I don't expect it will be accurate. Many thanks again.

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yes i did have her book here but cant remember if i lent it out or what

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Indeed, I've long said, "Hypothyroidism" will go down as the biggest scandal in medical history [along with CFS/ME, etc]... oops, the more 'sophisticated' [sneaky + unscrupulous] some docs become, they'll simply cover it up... as they have been doing.

It is perfectly excusable when medics do not know... yet wholly unacceptable to ignore the rich history of hypothyroidism and the work of those great men before them, treating people with understanding and compassion of their illness. THAT is one of the worst violations against patients... sneering arrogance and ignorance towards so many of us.

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I can’t understand why doctors seem so determined to ignore thyroid problems. So many of them are totally blinkered about it.

I also think they are biased against women - you are menopausal, you are neurotic or depressed , you are fat because you eat too much and don’t exercise enough the list is endless.

If they combined speaking and listening to their patients with full test results - not just TSH - and altered the ranges at which they are prepared to do anything, ranges which are so wide that many of their patients are half dead at either end before the doctors are prepared to do anything.

Well that’s todays rant over 😉

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I totally agree fruit and nut . As I understand it medical students are given half a day to thyroid disease hypo hyper goiter and thyroid cancer . They are told to diagnose from blood tests which is usually only TSH . Thyroid disease is so common world wide and for the most part , women are more prone . What can students learn in half a day and to be honest many teachers or endocrinologists know very little on the subject haven’t a clue about the range of symptoms . GP s are quite happy to prescribe antidepressants and show you the door .

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I do think that bias exists. We've all been there!

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A female friend of mine who's also a medical doctor is appalled at the gender bias when she is seen as a patient

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Trouble is I think female doctors can be just as biased - it was a lady doctor who told me three months before my Graves meltdown that I was just ‘needing my holiday’.

When I was finally diagnosed I had pretty much the same symptoms as I had when I saw her - I had just nearly killed myself when driving - so I was much more determined and wasn’t going to take no for an answer plus I saw a different doctor who knew what she was liking at.

Unfortunately I don’t think female doctors are any more sympathetic towards their female patients. I just think generally some doctors decide women - especially of a certain age - are all hypochondriacs.

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Rant away :-) xox

There is simply no excuse - hypothyroidism has a rich history - but since the TSH test and over-reliance on T4 as the hormone of choice - docs seem unable to think for themselves. The ranges are totally ludicrous - waste of time - but a gaggle of them have decided to 'make things this way' and force most patients into their mode. Shocking! Appalling!! Barbaric!!! Take care and be well [as you can]. :-) xox

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It's an all too common tale, I am afraid. Thyroid disease sufferers on average go quite a few years before diagnosis. I was so ill by the time I was actually treated that I was crying in constant all over body pain while awake, but that was not long per day. I was sleeping for 20 hours a day and couldn't even walk 10 metres without collapsing to rest and sleep again. Going back over my past blood tests, I was over range of Tsh for 10 years and not one doctor treated me. It's ridiculous how sick we have to get before the doctors will take notice. I thought I was dying of cancer or something!!

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Have not heard of this book - will seek it out! So glad Thyrogold worked for you.

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Yes, pity it's so expensive to import to uk...

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Yes I looked it up even here it’s almost $300 brand new you can buy a used for $40 on Amazon

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Hi dtate2016, just bought this book on Amazon UK. Available in Marketplace for less than £10, if you don’t mind second-hand.

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Thyrogold costs me about £80 for a 6month supply I am lucky that I can afford it . There are two strengths 150 mg s and 300 mg s .i need only one 150 mg s a day but many seem to need higher dose.. when exporting to uk have to buy two tubs so makes it more expensive .

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And pay import tax duties and postage and packaging which Tammie put up even more so it works out very expensive in the uk sadly.

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Yes I’ve just reordered 6 months supply and has gone up to £92 , then there will be import tax this end . If doctors would prescribe armor NDT this is a natural dessicated thyroid which is what was given to everyone with hypothyroidism before synthetic thyroxine was ‘invented’ it would help I’m sure many sufferers. I know some parts of the country (Uk ) will allow it to be prescribed . My doctor said it is the cost is too expensive similar to T3 .definitely worth asking tho.

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