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Thyroid UK
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Why do endocrinologist know nothing about hypothyroidism?

I am trying to understand why is it that most doctors don’t really have a understanding of diagnosing clinical hypothyroidism.

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Because they don't 'do' it in med school.

What is taught in med school is controlled by Big Pharma, who control the purse strings. They teach that thyroid is 'easy to diagnose, easy to treat' - although much of the evidence points to the opposite! But, BP doesn't want hypos to get better. It wants doctors to treat all symptoms as separate diseases, and prescribe a drug for each one: statins for high cholesterol, PPI's for low stomach acid (which is 'diagnosed' as high stomach acid), beta blockers for palpitations, antidepressants for 'mental' problems like depression and anxiety, etc. etc. etc.

This is the way BP makes its money. So, they don't want us to be well, just keep us alive - a patient cured is a customer lost! So, in all those years doctors spend in med school, they only spend one afternoon on the whole endocrine system, so you can imagine just how much of that is devoted to the thyroid - the endocrine system is vast! And, for some reason, they tend to concentrate more on diabetes and insulin, at the expense of all the other many hormones in the system. And that's why we're in the situation we find ourselves in today. :(

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Hello greygoose, you helped me everytime I had a question in this community and I know you know a lot about thyroid, based on your replies. So I was wondering may I ask you how can we make a difference between (for example, in my case) anxiety and panic disorders which comes from mental health issues and anxiety that is thyroid-related? I’m currently taking SSRI’s and Xanax for anxiety, so now that I read this post I was just curious if it really is panic disorder or just my thyroid out of order and maybe you can help. Sorry to interrupt :)

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I imagine a lot of people will not be happy with my reply to that, but it is my belief that there are no mental disorders as such. They are symptoms of something else going wrong in the body. Hormone problems, or nutritional deficiencies. Both can disrupt the workings of the brain. And, it's my belief that hormones and nutrients should both be tested thoroughly before resorting to drugs like SSRI's and Xanax. Correcting hormones and nutrients will restore normal brain activity. Drugs will distort the way it works.

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Internal and external environmental factors. Infections. Gut ill-health/flora. Heavy, and not-so-heavy, metals. Chemicals. Toxins. Gluten Ataxia. And much, much more. 😳👀😝

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Indeed.

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Low fat diets can lead to depression and suicidal thoughts.

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Agreed a lot of things are thyroid related!

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I liked your reply

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Thank you. :)

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In support of this my daughter was misdiagnosed as she presented with terrible mental health problems. Every antidepressant and anti-anxiety med in the book was pushed her way along with expensive counselling. I knew something was amiss, insisted on tests, hey presto Hashimoto's. Since getting her levothyroxin stabilised ALL her mental health problems have disappeared ENTIRELY.

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My knowledge of hypo came too late to save my brother, he spent years on a diet with lots of whole cereals etc, was diagnosed bi-polar and just got worse on all the meds, he eventually comitted suicide. Several years later I was diagnosed with Hashimotos hypo (our mother had it), and four years after that with coeliac D which makes me wonder if he could have been helped. Also makes me realise how badly treated my Mum was!

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How awful for you :-(

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I’m sorry about your brother. I know there needs to be more awareness of hypothyroidism. I know doctors are starting to be more thorough about checking thyroid conditions in the states. It’s still a work in progress.

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You might find articles by psychiatrist John Dommisse MD helpful. Here's a start:-

westonaprice.org/?s=Dommisse

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I'm very pleased to hear they finally gave the right diagnosis and solved the problem. It's terrible that psychiatry has so much power, these days, with their voodoo ideology. :(

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Thank you, that is a good thing to think about. I’m working on my nutrient deficiencies but didn’t consider checking other hormones.

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You're welcome. :)

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Slightly off topic as not strictly thyroid related, but my son was given antidepressants and told repeatedly that his IBS symptoms were all in his head, stress, due to A levels etc were given as the cause.

We saw numerous doctors who all said his problems were mental, when in actual fact he had coeliac disease, it took us almost 3 years to get a diagnosis due to lost results, general incompetence and results not being followed up.

The doctors almost convinced him everything was in his head, it sort of became a self fulfilling prophesy.

Since he was diagnosed he is making a steady recovery and has begun to regain the confidence he used to have, had we not pushed and pushed for answers I'm sure he would have been given many more cocktails of antidepressants and told he was imagining his symptoms.

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yep, exactly the same story with my daughter, except she had Hashi's not celiac. I appreciate that anxiety in young people should be acknowledged, but not at the expense of every other diagnosis or instead of physical tests being run. Being diagnosed with anxiety means you are somehow responsible for making yourself better and working towards getting better, when that doesn't happen it looks like you are not doing it right or not trying hard enough and hey, that makes you anxious and self doubting and ill. It also becomes like One Flew Over the Cuckoos Nest trying to convince people every symptom you have is not anxiety related

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Also the suggestion of "secondary gain," that you're getting something out of remaining unwell.

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I think a lot of teenagers and young adults "look" as though they have what we now call mental health problems as their hormones are running riot. All it really needs is time and understanding, not further disruption with drugs that no one knows how they work. I'm a big fan of Dr David Healy

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Hi Everyone

I totally agree with you. I believe many mental health conditions are misdiagnosed. It is much easier and quicker and lucrative for drug companies to prescribe antidepressants or other drugs rather than get to the bottom of what is going on. I work in mental health and the number of people I see that are taking antidepressants and other meds unnecessarily is shocking. More shocking is that half the time people trust the doctor and don't question why they are taking the drugs. I went to see a GP in my local practice that I had never seen before (because I couldn't get an appointment with my usual GP) and described my symptoms that were clearly thyroid and/or adrenal related. He said my thyroid was fine and he thought I should try an antidepressant because he thought I was depressed. Needless to say I declined his offer as I'm not depressed just furious with the lack of knowledge. I became Gluten free at Christmas as recommended by this forum which I think has made a big difference and I went to see a private endo in the end and he suggested I reduce the Levo. Not completely convinced this reduction is the whole solution but many of my symptoms have gone/reduced so will see what my blood and vitamin and mineral results say in a few weeks time. I will be asking for more help on this forum no doubt as people here have extensive knowledge on the subject.

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I researched Gluten Ataxia a few yrs ago. Here's a paper that might help.

jnnp.bmj.com/content/74/9/1221

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Thank you Londinium, the article is very interesting.

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So many people are told 'it's all in your head', by ignorant, lazy doctors, when in fact, they have real problems. I was even told by a dentist that my toothache was all in my head! Well, yes, but not in they way he meant! :(

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Couldn't agree more, I think so many doctors are actually making their patients much sicker than they need to be.

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Oh, definitely! I've never seen a doctor who hasn't made me worse, rather than better!

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I agree!! No such thing as depression and anxiety, panic attacks as ailments on their own. They are part of something else like hormone or vitamin or mineral deficiencies. The brain meds the right nutrients to fiction normally. Why do do many people suddenly have these symptoms after becoming thyroid compromised??

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Because of the wrong levels of thyroid hormone. :)

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Came across this article today

theguardian.com/science/201...

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That sounds promising. They do say the gut is the second brain.

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Well I’m chucking all sorts into mine at the moment, goat kefir, kimchi, sauerkraut, kombucha, probiotics......🤞🤞🤞 ;-)

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Let us know if something works. :)

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Well...., something is working as food was just passing thru me!! I’m definitely a lot less anxious in general..., however it’s likely due to the combination of things that I’m doing, that said I used to have bad wind and the probiotics got rid of that!!.... I’m definitely sold on the whole gut microbiome thing and feeding it as much diversity as poss 👍

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Totally agree! I have a friend who suffers from anxiety and is about to see a private councillor because her allotted time with the NHS specialist has run out. I've repeatedly suggested she has a thyroid function test, asks

for the results and so on ....she won't do it. Her whole demeanour shouts hypo!.

But hey....what would I know! Only the knowledge I've gained from joining TUK and the advice of people like you who are the experts!

HalfOno ....for almost 50 years medics failed to identify what was making me increasingly unwell. After a short time here and much reading as suggested by members the problem has been revealed.

Sadly medics are poorly taught and my (sadly now former) GP admitted that. They very often treat to mask the symptoms not to cure the problem!

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Masa2323 This is a good indepth question and I’m puzzled about relationship between mental health and endocrine system. I believe there is overlap with bipolar and treatment resistant depression. Medical literature states when people fail most of the ssri and mood stabilizers that they consider adjunct treatment thyroid hormone.

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Bipolar runs in my family, my brother so far has a diagnosis of unspecified bipolar because he’s 18. Most likely it’s type two and I see it in myself. I got this book “Why are you still depressed: Understanding Bipolar Type 2.”

It’s a great read, talks about the heterogeneity of bipolar and its causes. Of interest is the atypical presentation which can run alongside endocrine problems. Bipolar patients with a TSH higher than, I can’t forget the number, maybe 2 or 3 but in range, can benefit with thyroid replacement.

I’ve also come across an interesting scientific paper that looks at a subset of bipolar type 2 patients who have hypothyroidism, the majority with so-called sub clinical hypothyroidism. I can tell my bipolar type 2 probably preceded the worsening of my thyroid. I also know that starting thyroid treatment greatly helped my depression, and when an idiot doctor had taken me off it, I went into a severe depression I’m still trying to recover from.

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Look up the articles of psychiatrist John Dommisse MD. You'll find some here:-

westonaprice.org/?s=Dommisse

And Gluten Ataxia:-

jnnp.bmj.com/content/74/9/1221

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Bipolar patients with a TSH higher than, I can’t forget the number, maybe 2 or 3 but in range, can benefit with thyroid replacement.

That's because you're hypo when your TSH gets to 3. Not 10, as the NHS insists on! The ranges are so wrong.

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I have read most of this

westonaprice.org/?s=Dommisse

Going to print it. I feel absolutely sledgehammered today and even looking at indoor plants worries me as i know they'll need watering and i have no mental energy. Got the doctor appt tomorrow. Hope i can convince her.

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I hope so, too. :) And, my indoor plants know exactly how your indoor plants feel, I'm afraid. :(

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I even don't want my husband to buy me flowers every week,as I know how much work they take, and it is just one more job for me to do.

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I’m going to purchase the book that you mentioned understanding bipolar 2. This book sounds like an interesting read.

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I’m only 21 and had Hashimoto’s for years... I am currently taking Levothyroxine 150mcg and my FT4 and TSH are stabilised. I took blood tests after “panic attack”. And then for 20 days straight I had this extreme anxiety and recurring panic attacks, it was something I never felt before. So they put me on antidepressants. I was scared to take them at first but my symptoms did start getting better... I’m just confused about all of this I guess

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Look up articles by John Dommisse MD. You'll find some here:

westonaprice.org/?s=Dommisse

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Pity they didn't test your FT3, they would probably have found it was low. It's low T3 that causes symptoms, not T4 or TSH.

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I just found out that in my country we don’t have T3 medications, only Levothyroxine. That’s probably why they don’t test it. But I will ask my GP to get it tested next time for sure, and if she refuses, I will do it privately. Then maybe I can order medications online?

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full blown panic attacks were part of my daughters symptoms, she too was 21. Since being diagnosed and taking levo she has not had another. It was painful convincing the doctors they were wrong. Everything we said got the response `classic anxiety` right down to mentioning she felt like she had a lump in her throat. It really is worth considering that many mental health issues are linked to Hashimoto's. Her mental health is spot on now and she is very relieved she didn't go down the SSRI route as it is a big commitment at such a young age. Don't get me wrong, I am not saying they are bad, just consider that it may all be something more physical

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I’m glad that your daughter is okay now and well medicated. :) But I’ve had Hashimoto’s since I was 9 so I already took medications for like 12 years untill my first panic attack... and my TSH and FT4 leves are okay and relatively stable... been on 150mcg of Levothyroxine for over a year now. I’ve had my blood tests done after this first panic attack and thyroid hormones were okay... that’s why I don’t know how to distinguish between the two. :(

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Look up articles by psychiatrist John Dommisse. You'll find some here:

westonaprice.org/?s=Dommisse

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Which should have been their first go-to response!

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The brain has more receptors for T3 than any other part of the body - so when T3 is low in range things can go wrong ... do you know your level ?

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No, only tests my endo runs is FT4 and TSH...and I’m taking Levothyroxine 150mcg

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You could have private testing done through Thyroid UK - if that is possible - see link below and click onto ABOUT TESTING - several companies send out Home Testing Kits ...

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I’m from Serbia, not UK, but yes I can see and check if private labs here do it. Thanks

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Sorry - am sure you have lots of blood testing clinics that are available - like we do here in Crete !

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No need to apologise, I think we do have it, I just have to check it out! Thank you for suggestions :)

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amazon.co.uk/Science-Thyroi...

:-) This could be a helpful book ... I have not read it.

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Thanks, I’ll check it out :)

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That explains why I knew more than both endocrinologists at my local hospital. I even embarrassed one in front of two medical students as I shared information on diagnosis, research and treatment he hadn't a clue about. There are some amazing resources online for education including drhyman.com (functional practitioner with great online resources); drchristianson.com (ditto); hormonesbalance.com (magdalena wrzelinski) and many more from the US. All are worth following for valuable resources, support and available uptodate info.

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Couldn't agree more, they also have no clue about hyperparathyroidism either in the UK and don't get me started on osteoporosis.

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When it comes down to it, they really don't know much about anything. Nor do they seek the knowledge. And yet they pour scorn on the poor patient who has spent many hours researching their disease because s/he just wants to get well.

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I've wasted £4000 on consults, blood tests and scans on a so called top endo from Imperial college, totally useless as is the local Cambridge training hospital. So almost 4 years passed and am sitting here feeling like I am dying antibodies still over 1300 despite gf for over 2 years, aches and pains all over, horrendous anxiety no treatment as I'm invisible and trying not to go for the lorazepam.

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Well, this is why so many of us self-treat. Because, let's face it, we couldn't do worse than the 'top' endos, and will probably do better.

Don't get hung up on the antibodies. It's not them making you feel like you're dying. There's never been any guarantee that gf would lower them, and even if it did, you would still have Hashi's. Forget the antibodies and concentrate on getting on the right dose of thyroid hormone replacement, and optimal nutrients.

And, if going gf hasn't made you feel better, try eating gluten again, and see what happens. Gluten might not be your problem. It isn't for everybody.

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Thanks, I'm not going mad on Gf any more although I did have a food sensitivity lady come to my house and it seemed to pick up on wheat and the like but also things I knew like dairy eggs tomatoes. I'm in a difficult situation with diet as having primary hyperparathyroidism means calcium is being stripped out of my bones which is not good with severe osteoporosis. I already have a T5 compression fracture which the hospital missed for 15 months!! I'm drinking fortified unsweetened koko milk now and the Koko yoghurt. NDT didn't agree so am tempted to try T3 but only very gradually. Thanks for taking the time to respond much appreciated. I tried a phenergan last night as I don't sleep and it didn't do a thing but possibly made me feel even worse. Not sure if I have low or high morning cortisol but definitely high at night. Xx

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Yes, difficult to know what to eat.

Tinned sardines and salmon are rich in calcium, if you eat the bones. Beans, lentils, almonds - you could try almond milk - leafy greens...

NDT often doesn't agree with Hashi's people. It didn't agree with me. I need to be T3 only.

It would be best if you could get a 24 hour saliva cortisol test before trying to do anything about your high night-time cortisol. If you have very low morning cortisol, the thing would be to try and raise the morning cortisol, rather than trying to lower the night-time cortisol.

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Funnily enough I recently stocked up with tinned sardines in spring water. This anxiety I think causes nausea and I find it quite difficult to eat much but I always do eat healthily. I eat watercress for my lunch every day, loads of fruit. I'll give the lentils another shot but thought they were not great for thyroid. I did do a Regenerus saliva test a while ago and I unfortunately had joined a group affiliated with the STTM which gave all sorts of weird advice, they were all within the range on paper but was told it was low, low, low and high. Prior to that had done Medichecks blood test which was high end normal at 9.00 a.m. and then I did another Medichecks saliva test which there was some sort of controversy about and that was morning high, midday high end normal, afternoon high end and before bed over high end. Anyway, those groups fell apart, just as well as was so confusing and I think I was making myself worse on holy basil rhodeola drops, ashwagandha, you name it lol. So I stopped all of that. So I dont know if I am high or low in the morning and I read that can have the same symptoms.

Of course the pain from my compressed T5 doesnt help with anxiety and apparently the start of scoliosis. I was sort of doing okayish until about 3 months ago, when the nausea started again but that died down after a month and when I was walking home from shopping not thinking about anything in particular, noticed a lump in my throat. That is there on and off most of the time, possibly anxiety or to do with the cricopharangeal muscles but it is really irritating.

After my initial melt down over three years ago when the Hashimotos started, nobody knew what was wrong with me but I had 13 weeks of non stop heart racing, nausea and no sleep, no kidding it just went on day after day until I was in zombie state and took a handful of xanax. It was only a few months later I had an ultrasound on my neck down in London with a endocrine surgeon that this inflammation was picked up. Up until then I had been under a so called wonderful private endo from Hammersmith who didnt have a clue. I was reluctantly put on an anti depressant, although I wasnt depressed, mirtazapine but I did my homework and found that this particular drug had a study done on it about suppressing cortisol and apparently it does by up to 30%. The problem with that is, one of the side effects can be suppressed bone marrow and reduction of white cells. So I don't really need that with osteoporosis.

I just dug out the last thyroid test I had down in London over two years ago and

T4 was 74 (range 59 - 154)

T3 1.5 ( 1.3 - 3.1) and

TSH which wasnt done first thing in the morning was 4.36 (0.27 - 4.2).

Our surgery dont do T3 but any time the other is done always within the normal range which is all very convenient!!

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That T4 is a total T4, not a lot of use. And the T3 is a total T3, which is no use at all. So, ignore them. Your TSH was too high. You are hypo when your TSH gets to 3.

Why did you think lentils were not great for thyroid?

they were all within the range on paper but was told it was low, low, low and high.

The reason you were told that is because it's not just a question of being in-range. It's where in the range the result falls, that counts. Early morning it should be high in range, and at night it should be low in-range. But, the solution is not to throw adaptogens at it - I know they are supposed to regulate hormone levels in theory, but in reality, they are more likely to lower cortisol. And if your cortisol is already low in the morning, you don't want something that will lower it even further.

The thing to do is to try and raise cortisol production in the morning. And that will automatically lower it at night. So, give your adrenals what they need: lots and lots of vit C, plenty of B vits and salt, and a high protein breakfast first thing in the morning. As much rest as possible and as little stress. :)

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Thanks, it is so confusing. I do take quite a bit of vitamin C, the cherry one and the B's, B12 in particular sublingual. The problem with rest is that having osteoporosis I am supposed to keep on the move. I always have been a bit of a stresshead but always under control, my husband died when my daughter was 3, she is 37 now and I had 15 years of really bad experience with my poor mum and dreadful nursing homes, the last one of which was responsible for her death and registrar refused death certificate, then there was my dad, although he was a dear soul it was still stressful as I had a two hour train journey twice a week towards the last six months of his life and he died 3 years ago getting on for 100. Maybe everything has come to a head all these years later.

My mums cousin died a few months ago over 101, ugh, I just hope this longevity doesnt run in the family. I have four cats which drive me bonkers and had I known I was in for all these diseases would never have taken on the last two greek strays. At the moment I am sitting here with two wrap around microwave hotties, one at the front and one at the back and just had to answer the door like that, lol, taking delivery of a immersion tank jacket so there will be lots of aches and pains, or more I should say, with some swearing thrown in. Thanks for all your help and patience. I am going to order some T3 under the guidance of a friend and see what happens but the side effects make me a little nervous I have to admit.

Sorry forgot to mention the lentils. I dont know so much conflicting advice. Avoid cruciferous was another thing. I love celery and was told to avoid that. The other day I decided to get the smoothie thing out again as I dont have a juicer, bought some organic celery and then I thought I would go one better and got some organic carrots. Did that three lunch times in a row, trying to drink through the sludge, but I felt unwell by mid afternoon on each occasion so have knocked that on the head.

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I’m so sorry to hear this about your health and It will get better!

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Thanks. I've just been left to rot by endo and gp so seriously going to consider self medicating on T3 but very gradually. I tried NDT but it didn't agree with me. The so called functional practitioner who was also a GP seemed just interested in the money and got the hump when she had to stop practising at the local complimentary because they weren't covered by the CQC, so just went, never even bothered to check how I was on the NDT.

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greygoose, speaking of whats taught in med school you and all others might find this study interesting. PR

ncbi.nlm.nih.gov/pmc/articl...

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Doesn't surprise me at all. Thank you for the link. :)

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HI greygoose

there is a name for when a doctor tries to tell a patient that "its all in your head" but i just cant recall it at the moment. Do you know it? it appeared on the forum recently, but i haven't returned a search from the site with it in.

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Gaslighting?

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That's it!! I can carry on with my life now.

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lol

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Thank you every one for your replies!

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For the record, endos also know next to nothing about diabetes. I'm a T1 diabetic & have been through hell with endos. Everything I know about diabetes, injecting insulin, diet, etc. I taught myself. Same situation with other diabetics I know. That leaves the question of what they're actually taught.

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It also leaves the question of what they're paid for - apart from their time. ;-)

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Must be for writing prescriptions. Whether it's the correct Rx is immaterial to getting paid.

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That is truly shocking. They proclaim themselves to be diabetes specialists! Given their title - endocrinologist - it's not unreasonable to expect them to know everything about all hormones. But, when it comes down to it, they know nothing!

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Just as endos tell us abnormal thyroid levels are fine, they also tell diabetics that higher than normal blood glucose is fine. Doctors are terrified of hypoglycemia because they could be held responsible, so they allow patients to have unhealthy high blood sugar. They don't have the knowledge, training or time to teach patients how to maintain tight control. In the US, Certified Diabetic Educators (CDE) educate about diabetes, but they're not allowed to give recommendations on dosing insulin, which is critical.

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It's a universal mess, isn't it! And, to be honest, most people - doctors included - are just terrified of hormones in general. A GP will practically cross himself if you mention DHEA - if he knows what it is, that is!

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It is! You're right there's a terror of hormones, though meds that can kill people don't evoke the same response.

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Exactly. All down to the way they're taught.

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Maybe if we're really, really lucky we'll find doctors with scientific curiosity. Hey, I can dream, right?

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I don't even dream, anymore.

Once, I was having terrible dizzy spells (low B12, but nobody tested it), so the doctor gave me tablets for it. On the PIL it said "For dizziness of unknown cause (nobody had tried to find the cause!). Warning: may cause dizziness."! Along with a whole heap of other side-effects. So the doctor prescribed another medication to counter-act the side-effects of the first one. Same scenario. And this went on for quite a while. Finally, I said to him 'hey, this isn't a very scientific approche, really, is it?' And he looked at me as if I had two heads and a long tail, and muttered 'scientific? scientific?' like he's never heard the word before. So, I just gave up. Took me a long time to find out that low B12 was the cause of that and many other symptoms.

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Shaking my head so hard at your ordeal that I may give myself whiplash. Sadly, dreaming & hope are treacherous areas in the case of medical help. Scientific, an alien thought. Tragic state of affairs. Our providers are sheep!

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Oh, that was only the tail end of my terrible ordeal at that time. Won't go into details, but the only good thing to come out of it all was that I finally got diagnosed hypo/Hashi's, after probably having been hypo since I was 8! I was 55 at that point. And even that only came about due to doctor-bungling. I was putting on weight so fast you could almost see it with the naked eye! That doctor hated fat women, so gave me the number of someone he said was a dietician. I rang the number and was told that that doctor had moved away, would I like an appointment with Dr so-and-so. Well, I had no idea who either of them were, so I said yes. And, that's how I got to see the endo that diagnosed me! lol

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What a story! Thankfully it has a happy ending, though woefully long overdue. About 35 years ago, my grandmother, who was an old lady, went to a doctor who instantly diagnosed her as hypothyroid from looking at her & taking her temp. Hmm, she has no eyebrows, ice cold hands & lost most of her hair. Wrote an Rx on the spot with no labs.

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Sounds like she should have been diagnosed a lot sooner!

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Yes along with the rest of us!

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This is a very complex issue!I have lived with profound chronic anxiety from birth(well,I only became aware of it as a toddler!)I am now 69.

After 16 years on thyroxine,I had a breakdown.triggered by? stress?lmenopause?thyroid disease?long-term thyroid monotherapy?GENETIC PREDISPOSITION?(My NHS mental health nurse warned me 20 years previously that long-term anxiety often results in depression eventually)The breakdown was into an altered state of severe anxiety with depression.It was a living hell.

I recovered after two years with the help of SAMe,(S-Adenosyl-methionine)taken with B6 & B12)I Went to see Dr P,I tried every alternative method going & followed all the advice suggested on here,including supplements,herbs,vitamins,yoga,meditation,self-help groups,an 8 week mindfulness-based stress reduction course,,adding T3 etc etc to avoid anti-depressants.

Had a repeat on T3-only 5 years later,after 2 years stable on T3-only.

Couldn't face staying in the nightmare again like last-time,so took a low dose of Sertraline for 18 months.Have just weaned off it very slowly(reducing 10% a month)

Been on NDT nearly 18 months,now.

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So you switched from Levothyroxine to Cytomel?

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Great video....

I came across this today...

theguardian.com/science/201...

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I have suffered from anxiety and panic disorder since a child (9or10yrs old) sometimes unable to leave the house!! I never took drugs (as was told by a Dr as a child it was all in my head so figured then if that’s the case my head can make it better!!) I always did gradual exposure to face the fear (standing outside the house, walk to end of the drive and so on) as a student I drank alcohol which killed the anxiety, but made it worse next day but still indicates a chemical influence which I believe to be GABA now!!)..., I found a programme called DARE and it’s brilliant, there’s a FB group, a book, an app (look it up on Amazon) it’s all very affordable and is working for people around the world!! Created by a sufferer themself, I’ve told my Dr to recommend to people... The BBC are doing a documentary on it this year. I was only diagnosed with Autoimmune Hypothyroid in Oct 18, I’m 51, my anxiety was heightened for the years leading up to my diagnosis...was it the hypo, the chronic stress I was under, perimenopause, genetic link (mother had MS)..., probably a combination of all and one thing leading/triggering the other..., all I know is starting the levo my anxiety got worse initially but as my body has got used to it I’m much less stressed and anxious...., I also take CBD oil and meditate.....I’m seeing a functional medical practitioner who is currently writing a book on Nutrigenomics, she showed me that the brain is heavily dependant on iron so as mine is low that is the next thing I’m working on so we’ll see how that goes but I’ve read on here that iron helps the body absorb and convert T4 to T3 so again one thing influencing another..... Like everything it’s a complex issue and probably a mixture of incorrect chemicals/hormones but also neural pathways created by the fear which we can create new pathways but have to exercise the brain everyday..., which does work...., one other thing.., I got severely depressed when I had my mirena coil fitted it only lasted about a week and was awful but obviously shows the influence of hormone on our mood?!.... I hope you find your answers xx

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amazon.co.uk/Science-Thyroi...

I have not read this book - but it does sound interesting :-)

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Thankyou.....I seem to be not stop reading since my diagnosis!!!! So much to learn..., trying to pass on as much info to my daughter whose currently studying medicine..., hopefully she will be more aware through observing my journey!! xx

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I’m in the same boat and I find research is helpful to be on top of things.

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Because most see it as primarily a “women’s problem” 😒

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Too right! Yet us blokes with it are also treated as hypochondriacs.

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Like Jamjar67, I found starting levo made everything worse in terms of anxiety/depression for the first few months. In fact, changing doses or brands give me at least a few days of feeling basically suicidal while I adjust. Could anything else make it more obvious that hormones trigger anxiety/depression?

Also like Jamjar67, I found CBD oil helped a lot. It has also stopped me drinking so much (being able to avoid alcohol obviously helps mood and thyroid function).

The last thing that helps is exercise - I focus mainly on strengthening/weights exercises (as I hold weight almost totally on my stomach) with some cardio and going for walks. I used to meditate and find I often get into a similar head space when exercising. To be fair, losing weight also helps in feeling better.

Having said all this, there are obvious still the tough days but these things help.

Why thyroid seems to be completely ignored when it's so common is bizarre. Other than the, 'women whinge and are moody' attitude and thyroid mostly affecting women...

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Oh, and I take a multivitamin and a high vit d everyday with dinner, which helps too. I've also recently started adding chia seeds into diet.

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Have you looked into cytomel?

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Hi I have just been to visit one of the Thyroid recommended Endocrinologist which was a breath of fresh air, being able to talk to someone who actually had knowledge and understanding. Interestingly he is also a practising GP with a son going through med school to become one too and told me that when discussing thyroid symptoms and answers with his son he found he had little or no knowledge of all the related thyroid issues etc !

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Please can you message me with the endos name please and where you are .I am desperate to find such a person,thanks

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Hi Breena Not sure if I am allowed to personally recommend on here ? But Iive South West England and I saw him in Exeter but he also works a couple of days in London. Look on the recommended list on Thyroid UK there are quite a lot there. Good Luck

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If you can private message me that would be great and allowable.thanks

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You are allowed to send a PM to Breena ... 😊

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They're only bothered with diabetes. Probably on a bonus from the NHS to prioritise the 'epidemic'. However, hypothyroidism often leads to diabetes, so prevention should be the priority.

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Personally, I think it's because people (not only doctors) don't remember more than a third of what they are taught, and doctors can be too busy to stay current. So they roughly remember about a third of what they were taught whenever they were in school, which was likely 20-30 years ago. Technology was far behind then.

To be fair to them, and this is my personal opinion, I think that much of what is taught about various topics from hypothyroidism to diabetes on online forums, is wrong as well.

It's a tough job. There are no perfect markers for most important items - and many things fluctuate and can only be approximated. They are also hamstrung by high testing costs, insurance/legal mandates on how they should/shouldn't proceed, and their reputation in the medical community.

I think that the average person giving medical advice in a forum would be an terrible practitioner.

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I agree that a lot of forums especially those plugging nutritional "cures" for thyroid problems are bogus and misleading in the extreme. But there are also plenty that do have the right message even if it isn't always absolutely accurate and complete. I believe that this one uses experienced and knowledgeable people who have suffered and overcome thyroid illness in spite of socalled expert opinion denying them proper treatment. This is valuable pragmatism that can be offered to struggling posters on this site. We also employ the latest published scientific knowledge when it becomes available to bolster the developing understanding in the subject and its effects on new approaches to diagnosis and treatment. It is NOT a bunch of amateurs who talk off the top of their heads without thinking. The subject is indeed now known to be a tough one, but if the authorities will not acknowledge this by suitable treatment etc someone has to pick up the baton for the patients' sake.

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I do wonder about the information presented on the Thyroid UK website. That list of symptoms covers every symptom possible surely... it’s not very specific at all. Out of intrigue, I showed it to a group of friends and they all ticked at least a quarter of the boxes on there... some a lot more than that. None of them were hypothyroid (well not diagnosed!!) Looking at the interpretation of results section, again this seemed to suggest there’s no real need for blood results as if symptoms are suggestive they override results anyway... all results could indicate hypothyroidism potentially, unless they indicate hyperthyroidism. So with this combination of information... are all my middle aged female friends actually hypothyroid?? No really??! It does make one wonder. But if not.. with this information anyone could self diagnose a thyroid problem, visit their doctor, who scratches their head and says I don’t think it’s the thyroid?! Come on here get told doctors don’t know anything about the thyroid.. they’re all completely ignorant... and understandably feel extremely upset and not know where to go next, except perhaps to try self treatment, spend money on private blood tests etc. I am not trying to undermine this forum or the excellent advice that is given at times, or people who need support and advice from people with similar concerns. I understand the theory that people have a unique set point and if this alters then they may cause symptoms with normal range tests and genetic defects, lots of confounding factors in interpreting results etc etc. All of this is perhaps not well understood by the average doctor(??)... but the average doctor surely sees and treats hundreds of people and has some understanding or the complexity and uncertainty that exists in medical practice. The average doctor will understand that someone with weight gain may have a thyroid problem, but they may also have heart failure, liver cirrhosis causing ascites, Cushing syndrome, medication side effects from treating other conditions, a genetic predispostion to obesity, a comfort eating problem, a sedentary lifestyle, arthritis that limits their mobility and excercise ability. They may also have low mood, perhaps linked with many of the above problems with which low mood is commonly associated, another endocrine problem, an autoimmune problem, or a genetic predisposition towards depression, adverse life events, trauma, stress, medication side effects of depression, or some disruption of the microbiome, some poorly understood inflammatory cause of mental illness. They may be constipated, because of hypothyroidism, or perhaps because the take diuretics for heart failure or opiates or other constipating medications, or have eaten a western diet for 60 years that has affected their bowels in the way it often does with time, or not like fruit and veg or have bowel cancer. They may have itchy skin, because they are hypothyroid, or because they have liver disease, or renal failure, or aging skin, or a dry skin condition or a haematological malignancy. These might all be things they should consider and not just one thing that seems to tick the boxes. To hone in on one thing might mean they miss another problem. I just think someone should reconsider how this information is presented, as well as consequences.

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Geesh louise! You make a valid point! Medicine is like people say though it’s a practice! No one can definitely give answers and doctors in allopathic medicine treat symptoms and not the body. They use the dsm and icd-10 to get 6 symptoms minimum and presto you have this disease or disorder.

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I get your point... some diseases can be diagnosed more precisely than others, but with for example type 2 diabetes symptoms are treated for sure. Causes are understood to be genetic predisposition to metabolic syndrome, lifestyle/weight, diet, the fact that sugar is packed into processed foods (even seemingly healthy ones), stress, possibly some medications, possibly some underlying gut microbiome factors that are as yet poorly understood. What would you do if you couldn’t sell to a person the idea of changing some of the above factors if they could? Would you let them suffer with symptoms, become blind, develop neuropathy, renal failure, vascular disease etc? Or would you try and help by easing symptoms and slowing this process with drugs if they were available. Imperfect drugs that may cause side effects, but that’s the best you have. Not everyone is inclined to optimise their diet, exercise, not take drugs, take probiotics and eat all the veg they can. Is it fair to criticise people who attempt to try and help?

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I don’t believe ICD-10 has much of a role in diagnosis... except perhaps if you are a psychiatrist

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I think you rather miss the point here. No-one should suggest that vague symptoms by themselves are adequate indicators of hypothyroidism and it is not done here on this site. Of course some kooks appear from time to time with strange notions but they are a tiny minority. The symptomatic indicators have to be accompanied by thyroid function measurements to confirm or deny thyroid dysfunction. Sufficient severity of symptoms should always require testing to see if they do or do not indicate problems. However, there is always the problem of a combination of the individual response of a patient to a given function value, and where and when to start. The basic problem is that the medical profession have made a bed for themselves by a hard biochemical unalterable protocol of what it means to be healthy, subclinically hypothyroid or truly hypothyroid. This flies in the face of knowledge that that individuals respond differently to the onset of dysfunction and respond differently to treatment - hence this site, which would not exist if this were not so. If you had a valid point then this site would be superfluous because everyone would be adequately treated by the established unbending treatment protocol. We have lost the basic ability of the doctor to diagnose by patient presentation (skin, eyebrows, feeling cold etc etc) PLUS biochemical results. What is done is to dismiss those whose biochemistry doesn't fit, regardless of presentation. That is the point of this forum to help those who fall under this situation. To say that doctors in general know up to date thinking is a fundamental error. They are hamstrung by their prior education and by guidelines that really are treated as formal requirements. Remember that on the average medical activity is 15 years behind the research on average, and very poor work has been the activator for a lot of the diagnostic work. I speak as a research scientist in the field of more than 40 years, with 120 publications to my name.

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I think that you perhaps didn’t get mine. Of course you don’t have the means on here to do a clinical assessment, the individual makes that assessment themself based on educating themself on this from places such as the Thyroid UK ‘symptoms and signs’ page. (Have you looked at this?). Blood results are posted and may or may not clearly show a thyroid problem. Advisors have no clear way of correlating these although can have a stab at results etc. They can’t examine a person for loss of eyebrow cold skin (which may or may not be present and may or may not show a thyroid problem). My concern is about these ‘kooks’ you talk of. Vulnerable people perhaps looking for help in the wrong place. People who could actually need treatment from a doctor and decide to self treat through an idea that doctors are ignorant... and may actually harm themself in doing this. I am not saying medical are is perfect... far from it, particularly in the area of hypothyroidism and I am sure people benefit from the sharing of information, support and advice given in most cases. I have the greatest respect for your research. I have been reading some and it also points out these difficulties in clinical diagnosis, so I know you know this (unless you didn’t write that bit). Medical practice is behind research... yes.... It is frustratingly so. Your points are all valid, but as I said I think you missed mine.

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No by kooks I meant people with a particular axe to grind in suggesting worthless treatments. These are not vulnerable usually, but off centre and sometimes positively dangerous in promoting socalled cures that require money to change hands before you can get access to the info.

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Ok fair enough. Perhaps NDT if you don’t actually need it might fall into this category. If, for example one were to make a self diagnosis of hypothyroidism based on ticking lots of boxes for these symptoms (as a lot of people do) and have blood tests which are all within the reference range, but they decide there is a chance they might not be normal for them as an individual (but they might in fact be.... who knows). They can’t get the help they want from their doctor and then learn about the common opinion on here that doctors Are ignorant, endocrinologists are all diabetes specialists (really??) and they’ll be persuaded that self treatment is the only way. Is it really safe do you think to use NDT if they don’t need it... are there studies and published safety data on doing this? If not shouldn’t perhaps someone point this out to them? I appreciate people are free to make their own choices and can self treat if they want and you are not responsible for this, but doesn’t a charity have some ethical responsibility towards people who are looking for help?

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In talking about safety issues I think it is unwise to criticise the mote in someone else's eye while ignoring the beam in one's own. You ask about NDT and whether it has had adequate safety checks for usage in treatment. Unfortunately for that argument, T4 mono therapy which is the treatment of choice has exactly the same drawback - it was never properly clinically trialled, and has had no formal safety check in refereed literature. No thyroid hormone treatment has been given that degree of interrogation. Furthermore it now appears that the clinical trials that have attempted to discover any benefits of dual T3/T4 therapy in whatever form are largely ill-devised and completely incapable of answering the questions asked. As are trials trying to link TSH, treatment and atrial fibrillation or osteoporosis. This analysis requires sophisticated statistical analysis which is inappropriate to discuss here but has appeared and will further appear in the literature. Subgroups of patients who react fundamentally differently from the majority can now be distinguished by correct analysis. This situation is lightyears distant from present GP/endocrinologist understanding. The big majority of medics simply rigidly enforce the implications of their taught understanding on the patient which is badly out of date. This causes clashes with those patients who do not respond to classical treatment and seek alternatives which they are not offered and are summarily dismissed as having other problems (often with inappropriate drug treatment). Unfortunately it is the case that some (not all, there are splendid exceptions) GPs and endocrinologists are rudely dismissive of any complainant. The doctor's mantra is "do no harm". Unfortunately harm is what they are doing in a significant number of cases as witnessed on this forum. Ideally all options should be equally available (T4 only, T4/T3 combination, T3 only [last resort] or NDT). If these were freely available then all combinations could be tried to return all patients to their optimum health. One must also realise that this forum does not gather in all those whose quality of life is inadequate. There must be almost as many who suffer in silence from unatisfactory treatment imposed upon them. I do not praise the contributors on this forum as angelic. In the absence of any professional help they do the best they can to help others from a pragmatic perspective. I do not think this is grounds for carping, rather making the best of an unsatisfactory situation. The gratitude displayed by many posters gives the lie to any ulterior motive that the givers of advice may have.

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I think we are cross purposes. Maybe I have not been clear. It was the information on the Thyroid UK website... particularly the ‘signs and symptoms’ and ‘interpreting blood results’ sections. This area is confusing enough for people without adding extra confusion by not clearly stating how a doctors approach may differ to the Thyroid UK stance (wrongly or rightly is surely for the individual to decide, by being given adequate information. I am sure there are many different views that all have a degree of validity)

Is it safe for anyone to take thyroid hormones if they choose to? Hypothyroid or not?

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No it is not. Biochemistry is the only way forward. TSH to detect primary hypothyroidism and hyperthyroidism. But not TSH to control therapy. Problem 1 - at what TSH level to start therapy. Answer - a mixture of above-normal TSH and presentation symptoms not TSH only. Problem 2 - what to meaure to control therapy - Not TSH or FT4 but FT3. And this by whatever therapy.

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Is that actually your stance? It’s hard to tell what it is really from information provided and from looking at advice given. This was part of my concern really. I was a bit confused by a view that normal, even low normal TSH when associated with low in range T3/T4 could indicate primary (not secondary) hypothyroidism and indicate treatment (rare causes aside) and that people in this category were getting upset with their GPs for not treating them.

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Or actually low normal tsh and normal T3/T4

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No I don't think that diagnosis would be right. After all there are perfectly healthy people with low-normal FT3/FT4 and normal/low normal TSH. And I don't think advisers on this forum would disagree.

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Then perhaps someone should look at the wording of the ‘interpreting blood results’ section on the Thyroid Uk website? It is quite ambiguous and open to interpreting any way you want really. (I have seen this advise repeatedly given and it is no wonder people’s relationships with their doctors breakdown over it)

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Yes I've now had a look and it could be improved a good deal. I'll contact TUK to see if it can't be revisited. There's no reference to euthyroid likelihood for example.

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Thank you very much for looking at this, I appreciate this. I by no means want to undermine what is done here and the time people give of their own to helps others.

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I mean advice in general... not specifically by you I should add

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And reading through some posts from yesterday evening you might wonder whether some posters fall into this category.

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Diogenes . This Community is So Great Compassionate and Caring with personal solid experiences and advice . *By And For Thyroid Patients* . In many cases so much more Knowledgeable and *Helpful* with our Thyroid Journeys than many Dr's/Endo with their Medical Degrees .

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Oh !

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It's not "sexy". Diabetes is the big thing these days - and who cares about a lot of fat middle-aged women?

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And men :-)

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My take on this is that from 35 years ago, thyroid diagnosis and treatment was thought to be complete, simple and easy to administer. Your thyroid failed, TSH rose, above normal, so you got the T4 your thyroid as no longer making, your TSH would return to normal - all over and done with. Everybody satisified. Now on to diabetes - a much sexier discipline and uptodate as regards the obesity epidemic. So endocrinologists largely concentrate on diabetes and thyroid is the easy dismissable option. Unluckily for them, that is wholly untrue. Thyroidology is far more complicated than diabetes but they are not ready for a change in emphasis in their discipline. Comprehensively revisiting something you believed and were taught that it was over and done with is a steep hill to climb. Added to this, teaching in medical schools is perfunctory and well out of date. There are at least 30 hormones to consider and none of them get the teaching attention they deserve. They say that practical medicine is a moving feast 15 years behind the times at any one moment. That doesn't bode well for the 2020's.

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