Thyroid issues and GPs

[jarofpickles]

I'm a GP and having read a lot of threads on here I just wanted to make a couple of comments regarding thyroid issues. There seems to be a reasonable amount of mistrust of GPs/GP bashing/misinformation.

1. I do loads and loads of thyroid function tests and I treat loads and loads of people for under and over active thyroids. I see a lot of people with the kind of non-specific symptoms I read on here and send bloods for tests (tfts as well as the other usual suspects vit b12/vit d/ferritin etc etc). I would say the vast majority of people I find to have biochemically under active thyroids are incidental findings, I.e. they are asymptomatic, and conversely those who I suspect/the pt suspects they are generally come back normal. Recently I treated someone with a TSH of several hundred and a free T4 of around 1 who had no symptoms. My point being yes there are lots of symptoms people can get with hypothyroidism, but there is very poor clinical correlation.

1. I would love to see the evidence for this "TSH should be less than 2" thing that is often said on here. Even TSH which is slightly high (subclinical hypothyroidism) often resolves. It goes up and down a lot, again, most of the time it is an incidental finding.

1. Having thyroxine when you don't need it is dangerous.

1. As a GP, I am not in control of blood tests that are done by the lab when I request TFTs. The biochemists are. I will however ring the consultant biochemist if pts are very concerned and beg them to do things like free T3s, probably because pts have been on sites like this and told they desperately need them doing. They have always been normal when I have done this. Similarly, if I sent a referral to a consultant endocrinologist about someone with a normal TSH, my referral would likely be rejected.

So in summary, I am sympathetic to your symptoms... I will investigate them... It is not necessarily in my power to do everything you are told on here to do. A lot of people have thyroid-y symptoms with a normal thyroid, I think we need to be thinking what else could be going on, rather than making new rules with regard to the biochemistry.

Thyroidthingy - if you look through all the links I have posted and check out the hundreds of references between them, you will find up to date references to recent research. Do do not make the mistake of believing that if some research is more than 10 years old, it should be ignored and thrown in the bin.

Here is an interesting article about the Achilles Tendon Reflex and hypothyroidism from way, way back www.ncbi.nlm.nih.gov/pmc/articles/PMC2466474/?page=5 and you can check how best to carry out this test - and here is another one that also talks about reflex times in other tendons and how a slow reflex is caused through hypothyroidism -www.drdach.com/Low_Thyroid_Condition.html - and yet a further good old 'oldie' you will find here pmj.bmj.com/content/41/479/518.full.pdf - or you can check out this one www.turner-white.com/pdf/hp_jan04_thyroid.pdf

There are MANY reasons and many medical conditions associated with thyroid disease that stop thyroid hormone (whether synthetic, natural thyroid extract or even your own thyroid hormone) from getting into the cells, where it does its work.

The main condition responsible for stopping thyroid hormone from working are:

1. Your thyroxine dose is too low.

Often this is the case, and the doctor or consultant won’t increase it, since the blood levels appear perfectly okay. Sometimes, though, the dose of thyroxine is quite high – 200 mcg – 300 mcg – but you still don’t feel well.

1. Partial response to the single synthetic thyroxine replacement.

Your thyroid produces four other hormones apart from thyroxine, and most of us need them all. Without them our response is limited and synthetic thyroxine may not suit the system as well as the natural thyroid hormones.

1. Adrenal fatigue or exhaustion.

This is very commonly met with indeed. The production of thyroxine (T4), its conversion to liothyronine (T3), and the receptor uptake (called ‘binding’) requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however).

1. Failure of the 5 de-iodinase enzyme.

This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn’t. If the illness has been going on too long, the enzyme seems to fail. This conversion failure (in explicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn’t work, and T4 toxicosis results. This makes you feel quite unwell, toxic, often with palpitations and chest pain. (I refer to this further on.) If provision of adrenal support doesn’t remedy the situation, the final solution is the use of the thyroid hormone, already converted, T3.

5. Receptor resistance.

Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors is downgraded; the T3 just won’t go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do actually come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually.

6. Food allergies.

The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid.

There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.

1. Presence of systemic candidiasis.

This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer frightful sweet cravings. (I wouldn’t be surprised if it can synthesize a neurotransmitter, which causes such craving that you have to have chocolate, on pain of death.) Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels – which we usually test for – can be very high indeed, and make successful treatment difficult to achieve until adequately treated. (More of this further on.)

1. Hormone imbalances.

The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function.

1. Low Levels of Specific Nutrients

Thyroid hormone cannot be fully utilised if levels of specific nutrients are too low in the reference range. These are iron, transferrin saturation%, ferritin, vitamin B12, vitasmin D3, magnesium, folate, copper and zinc. Ask your doctor to test these for you and get the results, together with the reference range for each of these tests and post them here on the forum so we can help with their interpretation. In fact, always post the reference range of whatever tests you have had done. Doctors are not really taught very well how to interpret blood test results, and quite often, if they appear ANYWHERE within the range, they will tell you that your results are normal. It matters whether they are at the bottom, the middle or the top of the range.

LOW MINERALS AND VITAMINS AND THE THYROID CONNECTION

We recommend that all members should ask their GP or endocrinologist test the following to see whether any of the results are returned low within the reference range. This is because if low, thyroid hormone (either your own, or through thyroid hormone replacement) is unable to be fully utilised at the cellular level.

Should your GP or endocrinologist tell you that there is no connection between these minerals or vitamin levels and hypothyroidism, please copy the following references to show him/her.

Low iron/ferritin:
Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4)). See also: Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial.(5)

1.Dillman E, Gale C, Green W, et al. Hypothermia in iron deficiency due to altered triiodithyroidine metabolism. Regulatory, Integrative and Comparative Physiology 1980;239(5):377-R381.
2.Smith SM, Johnson PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993; 53(8):603-9.
3.Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78.
4.Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989; 119:772-778.
5.BMJ 2003;326:1124

Vitamin B12:
Vitamin B12: (5) Jabbar A, Yawar A, Waseem S, Islam N, Ul Haque N, Zuberi L, Khan A, Akhter J. Vitamin B12 deficiency common in primary hypothyroidism. Department of Medicine, Aga Khan University, Karachi, Pakistan. 2008 May;58(5):258-61. Clinical Chemistry September 2001 vol. 47(9), 1738-1741
Jabbar A, Yawar A, Waseem S, Islam N, Ul Haque N, Zuberi L, Khan A, Akhter J. Vitamin B12 deficiency common in primary hypothyroidism. Department of Medicine, Aga Khan University, Karachi, Pakistan. 2008 May;58(5):258-61.

Vitamin D3:Julia Bársony, P. Lakatos, J. Földes and T. Fehér. Effect of vitamin D3 loading and thyroid hormone replacement therapy on the decreased serum 25-hydroxyvitamin D level in patients with hypothyroidism. Acta Endocrinol November 1, 1986, 113, 329-334

Folate:
B. Catargi, F. Parrot-Roulaud, C. Cochet, D. Ducassou, P. Roger, and A. Tabarin. Thyroid. December 1999, 9(12): 1163-1166. doi:10.1089/thy.1999.9.1163. Published in Volume: 9 Issue 12: January 30, 2009
Bjørn G. Nedrebø, Ottar Nygård, Per M. Ueland, and Ernst A. Lien. Plasma Total Homocysteine in Hyper- and Hypothyroid Patients before and during 12 Months of Treatment. Clinical Chemistry September 2001 vol. 47 no. 9 1738-1741

Magnesium:
Jones, John E., Desper, Paul C., Shane, Stanley R., and Flink, Edmund B. Magnesium Metabolism in Hyperthyroidism and Hypothyroidism: Journal of Clinical Investigation. Vol. 45, No. 6, 1966

Copper:
Lawrence Wilson, MD. Copper Toxicity Syndrome (revised July 2011). The Center For Development. www.drlwilson.com/articles/copper_toxicity_syndrome.htm
Vivek R Joshi, Ayaz K Mallick, Manjunatha Goud B K, Ravindra Maradi, Maheshwar G Reddy, Raghavendra Tey, Gaurav Shorey. Effect of serum copper concentration and ceruloplasmin on lipid parameters leading to increased propensity to cardiovascular risk. Department of Biochemistry, Melaka Manipal Medical College, Manipal University. ISSN: 0975-8585

Zinc:
Iham Amir Al-Juboori , Rafi Al-Rawi, Hussein Kadhem A-Hakeim. Estimation of Serum Copper, Manganese, Selenium, Zinc in Hypothyroidism Patients. IUFS Journal of Biology Short Communication 121 IUFS J Biol 2009, 68(2): 121-126

This is an interesting post jarofpickles, but I don't think you will get a sensible debate from people who follow the "TSH should be 1" mantra. I have come to the conclusion that some of the most active thyroid support groups are almost like cults and their members will drown out any attempt at sensible discussion with a avalanche of anecdotes, pseudoscience, and personal abuse.

A few years ago I was feeling tired all the time, couldn't lose weight, low body temperature, slow pulse (or so I thought), fatigue, etc. Thyroid tests showed nothing and my GP said not thyroid. Thyroid support groups recommended I self-medicate with huge doses of "armour" thyroid. I tried and felt worse. When I discussed this on the forums the advice was to take more medication. I decided against this and educated myself further.

To cut a long story short it turns out I had another problem not related to my thyroid and now that is being managed I feel better. With the benefit of hindsight I can see I was also suffering from stress overload at the time and was trying to do too much when my body was telling me to slow down a bit.

Had I followed the advice I got from certain thyroid forums I would now be taking huge amounts of dangerous medications that I don't need. Not to mention harassing my GP and working my way through every endocrinologist in the country.

I can now see these sites/people for what they are - many are unwell but I would bet for most the cause is not thyroid related and for many is probably psychosomatic in nature.

Having said that there are some valid poitns to their arguments. For example why are the reference ranges so much smaller in other countries (particularly the cut-off for treatment)? And why is there such reluctance to investigate "TATT" symptoms beyond a simple TFT?

Absolutely. I don't know how to bring this thread to the attention of MNHQ, but yes, it us a hornet's nest in here, because people are angry - very angry.

There is a need for a national campaign to drag the medical establishment into the 21st century and ensure that there is proper treatment and support for all.

More to the point, where's OP gone?

The b12 test is another flaw. To be treated by the NHS you have to be under 200 but in other countries anything under 500 is a deficiency. I take methyl b12 now and I use spatone to keep my iron topped up. I've doubled the doctors maintence dude of vitamin d to 40,000 mg a month instead of the usual 20,000. My vitamin d was 80 on my last blood test so I'm not over treating myself. I could go on and on about all the flaws in medicine but I've realised they aren't looking to cure, they just want to cover the symptoms with pain killers, statins, bp medication, anti anxiety pills. The list is endless!

The other thing that bugs me about the sites like TPA is they twist the 'evidence' to suit their opinion (and that opinion is nearly always take more hormones).

For example poster A will have "hypothyroid" symptoms but normal TFT. They will tell 'A' they should ignore the tests because they are inaccurate anyway and they most likely have 'cellular' hypothyroidism and armour will fix them up.

Patient B will come along with a similar story but have slightly abnormal results. They will then tell patient B how sensitive the TFT test is and how this proves they NEED thyroid hormones NOW and how the GP is being irresponsible by suggesting a retest in 6 weeks.

Patient C will come along with normal TSH but slightly low T4 and they will tell C - take armour because TSH is not a hormone and only 'active' T4 levels matter.

Then patient D will come along with TSH that is a tiny bit high but perfectly normal T4 mid range - they will tell D to take armour because the TSH 'proves' they are hypothyroid even though T4 is normal.

I don't deny there are most likely some people they have delayed hypothyroid diagnosis but hypothyroid symptoms are vague and can be caused by many other things (as I found out). Yet the answer to almost any question from these support groups is to self-medicate with hormones and ignore trained medics.

crazy

Eyebag63 I would never tell anybody to self medicate with a normal thyroid function and negative antibodies. But mine all were thyroid symptoms and I'm extremely lucky to be alive and still have my child. Unfortunate many women have suffered miscarriages and had children born with autism etc because of poor test and mismanagement. My tsh climbed to over 100, my antibodies are in the thousands... How the hell did that happen when I was telling my doctor, I'm tired, I'm dizzy, I just don't feel right. Because my tsh was normal in 2011 they wasn't bothwred. But it wasn't normal it was at the high end of normal. If my tsh climbs over 2 now I get bad dizziness, I feel unattached, I get very tired and I 'zone out'... I tell my doctor that I need an increase when I feel like that; we do a blood test and without fail it has climbed over 'my ok number' so he raises thyroxine even though it's still within range. Symptoms are very important. It's your body telling you it's not well. I trust my body over a blood test.

Campaigner77, although I am not a scientist, I am an academic, so I know how research works. I wouldn't dream of dismissing something just because it was older, but it does have to be a. Cited by others to a significant degree and b. Published in important journals and c. Contributing to future debate.

Clinicians have to make judgements based on the central ideas in the debate, not the peripheral ones. This isn't a perfect system, and new ideas often get sidelined, but it is the most rigorous system for assessing good ideas.

Like some others who have posted here, while I have a lot of sympathy for the alternative view of thyroid illness, testing and treatment, I also want to see more of a conversation with the scientists. When patient groups just shout, in the basis of really sketchy knowledge, it puts me right off.

I think if active patient groups assessed their OWN potential flaws in thinking, knowledge, beliefs more, and assessed the science better, THEN they would have much more impact.

I agree that symptoms a v important. I think someone must be able to write a computer program that could input symptoms to assess them better. If weather can be predicted, hypothyroidism must be much easier.

For me, I know I am under medicated when I start tripping over my kids names, not just occasionally, but ALL day. And I also trip over. Each time, my TSH has been back up over 5 and my levo has been raised. There are other things too, but those are instant signals for me.

Just to prove my point here is a link to TPA

A post basically telling their members to get over to this thread and drown out this discussion with their loony tunes rants. They same thing happens any time an online news article is published - the comments sections get drowned out in these thyroid nutters spreading their 'knowledge' about hypothyroidism. This is why the "TSH must be X" myth comes from.

Yeah that stuff is really unpleasant and really unfortunate. It puts me right off.

Notice how they do this behind a closed site (have to be a member to view their forum). It really is like a cult.

For me, the saddest thing was that when I was really unwell, the NHS was not prepared to listen to me and to make me better.

Between t he ages of 23, when I had campylobacter, and 48 when my thyroid started to fail, I only really visited the GP for pregnancy and contraception, but when I needed them, doctors just fobbed me off with menopause when I was not menopausal and then CFS.

Regarding thyroid issues, I think a lot of the outcome depends on the GP. My problems started over 10 years ago, and I went to the GP with lots of - admittedly strange - symptoms. They would look at one symptom in isolation, then try to treat it, but not look at the whole picture. After about 18 months I suggested a referral to an endocrinologist as the problem felt systemic. At the time I was living in London and had private health insurance through work, so I was lucky enough to be referred to a top London guy. He was extremely thorough and did tests for everything. It transpired that the levels of my anti-thyroid antibodies (both stimulatory and inhibitory) were through the roof, and I had been cycling between interactive and overactive. This is quite unusual (endo saw around three cases a year) and accounted for all the weird symptoms.

I think it's a vicious circle: once you are under the care of an endo and are being tested for TSH plus free T3 and free T4 as the norm, GPs are happy to continue to do all these tests every six months. But you have to get referred to an endo first...

Over the intervening years my thyroid has more or less "burnt out" and I'm underactive most of the time (treated with 125 mcg of thyroxine daily) but have never felt as well as I did before the whole process started. My advice would be to keep pressing for the more precise blood tests: in the long run it must be cheaper than going back to the GP time and time again. And it will either confirm or refute your self-diagnosis.

While I'm on this thread with all the experts, may I ask your advice, please? Over the past six months I've had a lot of digestive problems with diarrhoea, cramping and pain. I was tested for Crohn's and had an endoscopy a good few years back; should I request this again? (In terms of other AI diseases I have Sjogren's, but everything else came back negative at the time). I think a PP was talking about links between thyroid and gastric problems, any pointers on the best place to start my research? Thanks.

I access a very good online support forum. I hope that people are not put off accessing information from them by what they read here.

It has been an absolute lifeline for me, being able to touch base with people who know how I feel.

There is a wealth of information, it isn't all anecdotal and advice to self-medicate. The reason people get narked about the whole subject is that we are so used to being fobbed off, disbelieved and dismissed.

I am one of the lucky ones who has had fantastic support from my GP and endocrinologist. I don't have primary thyroid disease but secondary generalised hormone imbalance due to prolactinoma.
I was diagnosed in my early twenties after my periods stopped. Many of the symptoms suggested hypothyroidism, but my GP tested my prolactin levels on a hunch and it was very high.
I have opt for treatment when I start to notice symptoms and if my levels have increased I take meds. My GP and specialist are happy to treat me this way.
It hasn't been plain sailing. My skewed hormones resulted in multiple miscarriages, secondary PCOs and hyperinsulaemia. I take a shed load of meds to control blood pressure and glucose metabolism. My endocrinologist has said that the problem may resolve after menopause. Here's hoping but I won't be holding my breath. Interestingly it is thought that many women with prolactinomas go undiagnosed and many assume they have just gone into menopause if the symptoms develop in their 40s. My symptoms include weight gain, fuzzy head and extreme fatigue or lethargy. So could easily be mistaken for thyroid problems. Prolactinomas don't seem to be as fashionable as thyroid problems. Sorry to be a cynic but when surfing the net with ones symptoms the thyroid is a nice benign cause with, on paper,a simple non life threatening solution.

Dr Google has a very negative effect on accurate clinical diagnosis. Patients are often armed with a list of symptoms that fit the diagnosis they have already convinced themselves they have. It can cloud the picture they present to the relevant clinician and lead you up the totally wrong track.
We play a game at work. We pick a disease, Google it, then see who has the most symptoms. It's amazing how many men have suffered from pregnancy.
And everyone has had a brain tumour or two.
I always advise patients to use google scholar if they want to research their condition because filters out the bull.... and to avoid forums because of the trolls, they prey on the vulnerable!

I feel very badly let down by the nhs. I had hardly ever visited my doctor until 5 years ago and then I seemed to be there every month. Nothing wrong, results all "normal". Tests for this that and the other. Gradually it got worse, diagnosed carpal tunnel, hysteroscopy for awful heavy periods, tennis and golfers elbow, deafness, failing eyesight, hair loss, exhausted, brain fog, lost ability to string a sentence together, depression, anxiety, taking all day to do what used to take me a couple of hours, three stone weight gain, I could go on. absolutely definitely not thyroid say GP over and over again. Middle aged woman, must be invisible, must be menopause, no it isn't. In total despair went to private doctor, given this natural dessicated thyroid, and my life has transformed over the last 7 months. I'm not fully back to my old self yet, but I'm recovered enough to realise that the decline started about 18 years ago. If taking unnecessary medicine is so bad for me when there's nothing wrong, how come I feel so much better? The Internet thyroid sites have helped to turn my life around, I certainly wouldn't dismiss them as fanatics.

Them Internet groups are fab. They also can email you a list of tried and trusted endocrinologists so they don't all tell you to self medicate! But if people are forced to use that route they have support. I cannot believe what I'm reading in here from people that don't suffer it. I'm sorry but if you decided to buy NDT from the Internet when your thyroid levels were fine then that's tour stupid fault, not the fault of others. You are an adult with your own mind. If I told you to stick your finger in a fire would you? It isn't a cult it's a support network. I'm thankful they exist.

can the thyroid antibodies test be wrong? why just test tsh when a thyroid antibodies test would be a helpful addition to see if it is in fact hypothyroidism?

I'm another individual whose life was ruined for a decade almost by various hypothyroid symptoms. My then GP told me I was depressed. I had been depressed before so maybe it was an easy diagnosis. And I did sit in her office weeping at times - more from frustration and exhaustion than anything else. But I had lots to look forward to and knew I was certainly stressed (4 DC under 10, one with significant disability, sick/dying parents, a PT career of sorts - which was being ruined due to my sickness record). I knew I had a 'borderline' raised TSH (8 I think) and with a nursing background and other training in reading big books and medical research I'd go to Waterstone's and read up. No web at home then. Late 90s. I asked her to give me a trial of thyroxine to see if it helped. She refused. I asked a colleague in the same practice. he refused too. The first one said maybe it was a sign I'd develop hypo as an 'old lady'. I was late 30s then. I asked a a few times, always got the same answer, that thyroxine wasn't required, despite me quoting up to date info from my reading. After that I gave up.

After my parents died we moved to another part of the country - so new GPs. I didn't even think about my thyroid but I had dreadful brain fog and terrible carpal tunnel syndrome. As I say I'd given up somewhat and was no longer able to work as a nurse. I had begun studying but that was on hold too. I was having bloods done due to another long term condition and suddenly remembered I'd been told to have my TSH done annually and it was more than that now. A few weeks alter I went to see a GP to get results etc. His almost firss words were 'You've got an underactive thyroid'. I almost fell off my seat. He then stood up andgrabbed my neck ,checking for a goitre. Which I had, a small one. I asked about my TSH and it was the same as 8 years earlier when I'd been refused thryoxine. I began with a small dose - 50 mcgs. I've gradually gone up to 200 mcgs and despite other health issues, mostly also autoimmune, I am so much better. My TSH hovers just above 1 and, despite being on steroids for other problems, so at risk of osteoporosis, I feel okay . Doctors keep and eye on it, as do I. Cos we are a team.

I'd say my main symptoms went within 2 weeks of beginning thyroxine. It took longer for some things. It was/is a very enlightened practice, unlike the previous one. I was reassured by another GP that the longer you need thyroxin and don't have it, the longer it can take for your symptoms to settle. Over a decade later I feel better with thyroxine than without though have other problems which mean a low quality of life. And what if I hadn't moved practices or had ended up with another crowd of numpties looking after my health. It's quite scary really. And, yes, I am very angry at what happened to me at the hands of the NHS.

I should say I read big tomes and medical research in medical libraries too, not just Waterstone's.

Yes, sans fairy, I think you can get false positives and false negatives for thyroid antibodies. Not sure how common it is though, and you'd not necessarily know.

Years ago, during my long thyroid reading phase, there was an article on the BMJ called 'Me, the heart sink patient'. By a GP who, while on mat leave, had developed hypothyroidism and it took a while to be taken seriously. Though I don't think it was a decade.

I stopped reading those thyroid websites ages ago, as thyroid is the least of my issues these days. And my brain was so foggy I've not retained much of the science I read back then. Some of the posts read as terribly sad, people who for years wanted treatment and couldn't get it. They were not all bam pots either. They just wanted to feel better. Who wouldn't? People who were desperately let down by medical science. We need more compassion, I think.

Obviously those slating thyroid websites do not have a thyroid problem! If they did they would realise how valuable they are! And obviously if they've used them at someb stage they thought they did! Not once have I been encouraged to self medicate! I've used them over 11 years! When I suspected I had problems... I was right ...and it was big relief knowing l wasn't alone! Don't knock the websites without them things would be lot worse for many!

Oh cult? Pfft that's like saying any forums cult like Lol just cos we have same condition?

Even though I am not an academic, I am aware of the need to cite proper references.

As an academic, you can check for yourself whether the references to the links I posted previously have been cited by others to a significant degree, published in important journals, and contribute to future debate.

I am lucky to have good dialogue with scientists but sadly, it is not the scientists who create the guidelines/policy statements etc.The RCP, BTA, SoE et al. are the policy makers, and it is theywho refuse to enter into any conversation, not only with us, but with the scientists too. Many scientists are working with patients, and some with patient groups that do a lot more than "just shout", many members of such 'patient groups' being intelligent individuals and some having a vast amount of knowledge, which they use to campaign for the betterment of others who have been badly let down by the mainstream medicine.

If I was "put right off" by patient group - I wouldn't join them.

Perhaps if you were a member of some thyroid and thyroid related campaigning groups who are working towards helping others, you would see that many of them do assess their OWN potential flaws in thinking, knowledge, beliefs. They also assess the science to the best of their ability, which can be hard work because not all of us are academics. Some of these groups, whether you are aware of it or not, are starting to make an impact, albeit slowly, and eventually, the 'powers that be' will listen.

'jarofpickles' has admitted to taking away some of the links in this discussion to study further, so that's one bit of good that has come from the "shouting" on this particular forum.

If you know how to get the 'Masters of Endocrinology' to enter into fruitful discussion, tens of thousands of us in the UK alone (millions worldwide) would be grateful for whatever help you would be willing to offer please.