I've been on here awhile now and what really strikes me is how poorly the thyroid is understood by what seems the majority of doctors and professionals, it's truly shocking! I appreciate you don't hear all the good stories but even so many doctors seem so ignorant.
There's not a day go by that doesn't have a thread related to a Dr not realising the effect how a poor functioning thyroid has on a patient or the lack of knowledge in how to treat it correctly.
Worse still is the NHS over use of the word NORMAL, I really dislike that open ended word, what's normal for one isn't necessarily normal for another! Why isn't the NHS taking a proactive approach and treating each patient as an individual and not pigeon holing everyone like they do. NORMAL needs replacing with OPTIMAL.
It seems the UK is so far behind in understanding and treating the thyroid thyroid compared to the likes of the States etc.
What can be done to tackle these issue?
In an ideal world everyone would have the opportunity of having a medical every 3 years or so. That way everyone would know what's normal and what's optimal for them and their health. But no, the government would rather waste £50 billion on a stupid idea of a railway line.
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Gsp177
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The fault lies with the people who set the guidelines with such broad ranges and insist on T4 monotherapy and with medical training's over emphasis on blood tests rather than presentation of clinical symptoms.
I think thyroidology in the USA is probably as dire as it is in the UK from reading American thyroid patient sites.
You are right, Clutter, about the US doctors and thyroid conditions. Four of my sisters, my mother, her sister and three female cousins have had their thyroids either totally or partially removed. My TSH is 0.87mIU/L. I have had fibro like pain forever, low energy, insomnia, very high cholesterol (both good and bad) carpel tunnel like pain, and tingling and numbness in my hands. I feel particularly awful in the mornings and at night. During an MRI, nodules were found on my thyroid gland and I was referred to an endocrinologist. She ordered a nuclear scan. Turns out I have many (over 25) hot and cold nodules, some large and some small. I don't know what my T3 & T4s were, but doc said she said she guarantees all the pain is not caused by my thyroid. She could do nothing. Must be my numbers were normal and since that's the case, I'm imagining all the pain. She said I should watch and wait until my voice gets hoarse or I start to gain weight, then come back. My sisters all have horror stories about their endocrinologists. Most refuse to prescribe the bovine hormone and will only prescribe Synthroid (levothyroxine). On the other hand, you would not believe the GPs here in the States who prescribe Synthroid right and left. Almost every other middle-aged woman I talk with is on Synthroid.
Annee, Levothyroxine caused my fibro pain, COPD symptoms, numbness, tingling and a host of other things when I was over replaced to suppress TSH. I stopped taking it for 12 weeks and all symptoms cleared. I can tolerate T4 again in combination with T3.
My endo team didn't say it was in my head but didn't listen to me either and insisted it couldn't be the Levo until I proved it by getting well.
Thanks for your reply. The endo doc didn't prescribe anything at all. Just said she could do nothing and the pain, etc. was not caused by my thyroid. This was three years ago. I am on a thyroid supplement from my natural health provider (not a prescription) and follow a gluten free diet which has helped a great deal in relieving aches and pains. But my hands are sooooo bad. I cannot even grasp a hairbrush first thing in the morning. Its not RA, according to blood tests anyway.
Annee, It may be worth having another TSH, FT4, FT3 and Thyroid Peroxidase (TPOab) antibody test to see whether anything has changed and perhaps a pituitary function test. If there is any pituitary dysfunction TSH testing is useless and FT4 and FT3 are the only valid thyroid tests.
Annee, It may be worth having another TSH, FT4, FT3 and Thyroid Peroxidase (TPOab) antibody test to see whether anything has changed and perhaps a pituitary function test. If there is any pituitary dysfunction TSH testing is useless and FT4 and FT3 are the only valid thyroid tests.
Annee, if your last TFT was 3 years ago it's time for another as things change. Make sure FT4 and FT3 are tested in addition to TSH.
If you post your results with lab ref ranges here we can take a look and advise. Do't forget the ranges as they are probably different to the ranges we see in the UK.
I am just starting acupuncture for my hands, however I will go back to the Endo and will ask for these tests. I feel much better prepared to discuss all this with her, thanks to this forum and the education I gleaned from it.
Our thyroid gland health depends completely nowadays on the blood test, whether we get diagnosed or not when it malfunctions.
Before the blood tests were introduced (how much profits are made worldwide) doctors were trained in clinical symptoms the patients presented with and were diagnosed according to their clinical symptoms alone (which nowadays are not known/recognised) and prescribed (even on a trial basis).
Very rarely do doctors recognise clinical symptoms of thyroid diseases but if your bloods are in the 'normal' range you do not get the medication to either make you feel better or pronouncing 'it's all in the mind'. While we deteriorate and most probably other serious consequences follow, heart, cancer, mental health, blood pressure etc.
It's not just the UK. I agree with shaws and Clutter and the points they have made. I live in Greece and some things are much easier - ie they will do full testing of TSH FT4 FT3 and Anti-bodies - but they still have a problem with 'it's normal ' - when they mean in range.
Recently someone I know was diagnosed here with being Hypo by the GP only for the Endo say he isn't. TSH above 4 and FT3 and FT4 low in range PPI's and Statins were prescribed long ago !
There has to be a shift one of these days when they realise how many people are having to self-medicate. Not something this forum endorses however it seems to be the only route forward for many. Perhaps we should look at it another way - and say it is taking responsibility for OUR health.
It's the same in the USA. They're allowed to test T4, T3 and antibodies, but they still treat the TSH and prefer to keep it at the high end of the "normal" range - which last year was raised to 4.5. I gave my GP and my endo copies of an article demonstrating that patients on T4 are at greater risk of heart and cardiovascular problems when their TSH is in the mid- to high-"normal" than low-"normal" range; I don't know yet whether it will make a difference. See my post (not question) from 17 days ago or my answer to an earlier question today for the reference and abstract.
Yes, why oh why can't they realise that being within the lab range is NOT the same as being optimal.
I said to the endo I saw recently I couldn't really see any point in patients making the trek to hospital because all 'you' (meaning the department in general) want to know is what the patients TSH is, 'you' don't want to know how we feel and as the range is so enormous that we can be within it and still feel awful I can't see any point in coming in. all you need to make yur diagnosis is the figures.
Response - 'Oh' followed by nervous laugh. Have to admit I laughed too. Gsp177 - I couldn't agree with you more. We need to change doctors' language - persuade them to start using 'optimal' rather than 'normal' or 'within range' - but then that would involve talking to and more important listening to, their patients.
I totally agree too. In the reply to my complaint I was told that Dr X has taken your symptoms seriously but does not believe they are related to your thyroid. How can he have done when he didn't want to know what they were?? He also said, in rather a threatening tone in my opinion, ' you won't find any doctor to treat you with those blood test results'. Which just confirms to me that he didn't give a flying pig about my symptoms, just my blood test results!
Too true. Initial 3 years of hell with hyperthyroidism and doctors telling me I was normal range but multi nodular. I saw who is meant to be the top dog in London - obnoxious is more the word I would choose. When my TSH finally fell to 0.03, I phoned to tell him my heart was jumping all over the place. His wonderful answer was "I told you when I last saw you there is nothing wrong with you, well not with your thyroid gland anyway". I then saw his colleague and was diagnosed. On PTU for last 3 years and still feel like hell. Allergic to so many things like incense, insecticide and some medications. Adrenal maladaption stage2 probably helping the allergies.
Doctors could learn a lot from their patients but aren't interested. If your a woman with thyroid disease it's all too easy for them to blame symptoms on menstrual, menopause or that we are simply being neurotic.
Aagh!! Why don't they listen. No longer a caring profession - just a money msking business for most.
I am totally with you all on this one. Whilst my doctor was more open to my symptoms being related to the thyroid, the endo I saw on Tuesday COMPELTELY bypassed these related symptoms, even though I believe they were screaming at him HYPOTHYROIDSIM!!!!!!!! But no, he looked at my test results and said they were normal, every related symptom after that was brushed passed without a single comment. He did though, of course, pick up on my past depression and current (lifelong) anxiety. Note to self - keep quiet about those things in future In fact, note to self - keep quiet! I give up with the NHS for this particular problem, b*llocks to it.
Yes this is true but if they only looked at the list of symptoms that Hypothyroidism pose ie anxiety and depression being on the list of 60 or more symptoms then they should prick up their ears and LISTEN.....
Dear all. I know you are and have been suffering but reading these things has made me feel so much better because I am not the only one. I am sorry it is like this but am so gratefull that you have all posted on here. My symptoms are odd - they flumox me - and they are mine... I understand a Docs dilemma... What I am fed up with is not being asked things I should have been asked... Not having anything eliminated as a cause of feeling terrible and not being talked to like an intelligent human being. The Docs may not be in such a dilemma if they asked pertinent questions and let me respond. Thing is it took a lot for me to go to Docs.. As I know my symptoms don't fit normal boxes - that is why I like some of you maybe went....but I didn't expect to leave feeling demoralised. It isn't good enough but I don't know what to do about it. Good luck everyone. I really wish for you that you are treated and are stable and can do something nice for yourself to help you through the day. x
Like many others, I've been though the thing about being told that my results showed over treatment when I felt well, and then told my results were normal after dropping the dose of thyroxine and becoming hypothyroid. My GP also would not take my worsening symptoms seriously other than to offer me other drugs to treat them. When I refused more additions to my long list of drugs, she was no longer interested and became more aggressive. I have finally seen an endocrinologist who accepted that my original dose was ok. I now feel relatively "normal", although I now realise I could probably be better with some extra T3. I'm leaving that discussion for a later date, while I celebrate my return to "normal". However, I now feel that I have to fight harder to get a better deal for everyone. I still cannot believe the ethics of GPs tampering with the treatment of conditions they don't understand, and making healthy people ill. This surely cannot be acceptable to anyone? In due course, I intend to write to Jeremy Hunt (after my next appointment with the endocrinologist, as I don't want to upset him - he did, after all listen to me and see sense). Perhaps we all need to bombard Jeremy Hunt with letters detailing our experiences? Or has this been tried already (on a large scale)?
I was "lucky" in being diagnosed with Hashimoto's quite quickly. I duly collected my prescription for levothyroxine, and trotted along to my 6-monthly appointments with an endocrinologist (at the diabetes clinic). I accepted that my blood tests were "normal".
It was only when I started getting more symptoms, and began to research my illness, that I realised there was so much more to it. However, not once did any doctor actually even explain to me what hypothyroidism or Hashimoto's was, even when first diagnosed. I do go to appointments now with the overwhelming urge to say "I am not a number".
The fault lies with the fact that doctors are trained in 'evidence medicine' Simple put this means they are completely reliant on what test results produce -if they don't show anything up then you are not ill -no matter how poorly you look or state! This creates a blinkered approach to medicine.
Evidence medicine is also a big money spinner for pharma -as they can charge lots of money for tests they invent -whether they are any good or not!
E.g. I had terrific back pain for months -completely disabling -GP sent me for a scan -nothing much showed up apart from considerable wear and tear -GP's interpretation nothing wrong with you.... Physiotherapist says oh yeah we often find that these scans don'y show up the causes -we get people in in terrific pain but the scans don't reflect it. Then we see other people not in pain and the scan shows terrible degeneration and we can't understand why they are not in pain!! Medics conclusion to all of this is that back pain is all in the mind!! love it!
McTimmoney Chiropractor said your back is out massively -put me right in three sessions of treatment -felt great after one though! As far as i am concerned the chiro is right as he sorted my back pain out and no further scans required -just his well trained hands and mind! Backs been great since!
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PPI's and Statins were prescribed long ago !
In fact, note to self - keep quiet! I give up with the NHS for this particular problem, b*llocks to it.
Advice on what to ask Dr
what can be done when borderline hypo?
Impossible to get a diagnosis, don’t know what else I can do :(
What's \"normal\"?
Graves Disease - can you be in normal range but eyes continue to get worse?
