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.

A few years ago I had to battle even for a B12 test because my GP didn't believe I could possibly have it despite me having a massive family history of the issue and all the classic as well as some of the worse symptoms. I haven't been properly diagnosed as to the cause of my deficiency as she was so unhappy she decided I was diet deficient without running tests and now I've been told I can't be properly diagnosed unless I'm willing to come off the jabs.

For the last year I've been suffering with classic signs of thyroid issues, but was told my tests were fine and it must have been anaemia. I have found out today that wasn't the case. Yes I was anaemic but no, my TSH and free T4 levels were not fine (TSH high, free T4 low). I wasn't even asked for further tests to monitor it. A year later another GP in the practice decided that was wrong and reran TSH only, that now is within normal range but high (and of course I don't know what is happening with my free t4) and my other bloodwork showed nothing else wrong with me. I am open to the fact that I may not have thyroid issues, but there is something going on with me and I'd like that looked into.

So off I trot to another (we get no choice at my practice) GP today who has decided that I'm perimenopausal. Despite me having no symptoms of that. Except for hot flushes, which despite me categorically explaining several times I wasn't suffering with, he decided I was. And I was told I couldn't be having any other symptoms I am suffering with as that didn't fit his diagnosis. I've actually had to put a complaint in to get my records corrected because I was unlucky enough to see that sort of GP.

Maybe if more was done to stop that sort of rubbish happening, and more GPs encouraged to listen to their patients then they'd spend less time on places like here looking for answers.

Sorry for disappearing for a while.

Some of your stories are awful and I totally get why you feel let down by the health service. There is no excuse for a doctor not checking a thyroid function if you've come to them feeling tired/awful etc.

However, yes, I look at the blood results and yes I believe the reference ranges. Reference ranges are developed by looking at large cross sections of the local population and taking the top and bottom x % as being abnormal. I've just done a quick pubmed search and there are recent uk large studies that have found upper limits of reference range of over 4. So I continue to wonder where this under 2 thing has come from (other than in pregnancy - that's different). It doesn't seem to be in the literature. Furthermore, the whole thing doesn't make sense. Why should your TSH make you feel any different? It's not logical. If you physiologically active hormones are normal I don't see why you should be symptomatic if your TSH is 3, 5, 10. As I mentioned before, I had an asymptomatic pt with a TSH of several hundred. I dispute the TSH has to be around 1 thing to feel well. That is just not my clinical experience.

Also, to reiterate, GPs are not the only dr involved in this. When we send tfts for pts on thyroxine, we get a report back with numbers and an interpretation such as suggests poor compliance/under replacement, or adequate replacement. I listen to my biochemist colleagues.

And lastly, once again, thyroxine is potentially damaging, and no I absolutely wouldn't try popping some levo if I was putting on weight etc, if my tfts were within the reference range. I think most people feeling very tired and achey etc would also feel a lot better popping a bit of a steroid, but do we do it? No, because they are dangerous in the long term. Likewise with HRT, a lot of women would feel better, but for some the risks are too great.

I'm not saying it's totally straightforward, there are patients that don't follow the text books like with everything in medicine, and I always try to keep an open mind and listen to patients concerns and address them. I have just notes on here there is a lot of obsession with thyroid function which I think is based on shakey science and is unhelpful to some people, and may lead to them missing treatment for a different problem.

I guess that's a question to ask the endocrinologists, a large number of whom seem to regard it as a significant threshold.

What you're saying, jarofpickles, seems entirely logical, but the clinical guidelines RELY on the TSH level, while in reality more thyroid patients would prefer a more holistic approach. Given you have acknowledged that the tests are not perfect, and that tests/symptoms don't always correlate, I am not sure why you would wish to reject the NICE guidelines to offer a trial if TSH is between 4-10?

thanks for your posts JoP.
That last point needs emphasising. By treating thyroid when the evidence is weak a more severe problem could be overlooked and even get worse. Waste of everything to treat the wrong thing.

I have never said that. A TSH between 4 and 10 is abnormal, and I would consider a trial then if a patient did have symptoms and were keen. I would talk about the evidence and we would make a decision together.

But if they had TSH in the normal range I would be looking for other causes of their symptoms.

Yup,and because my GP couldn't do much about it and the consultant endocrinologist was a patronising arse, I stopped taking shitty thyroxine and now pay for NDT. I now feel normal.

OP I was told the around 2 by my GP, and by a Doctor I saw privately. So it must be coming from somewhere?
I am another who feels rubbish, and yet whose bloods are often "normal". I have my regular review tomorrow so we will see what the results are next week, but I haven't felt really well since long before my TSH went high enough to medicate, and ever since. Even though I have felt slightly better on thyroxine, I haven't felt anywhere close to really well, and that seems true of so many hypothyroid people, that I wonder what on earth is going on? I am peri-menopausal now, but I wasn't when I first had symptoms of a thyroid problem. I had a TSH of 8 while pregnant but was told that was fine. (I still worry about what that might have done to my daughter.) I have friends my age and older, friends pre peri and post menopausal, and only the handful with thryoid problems feel as I do, cold, exhausted, woolly brained. The others are all charging around, working, getting things done, looking great. I am two stone over my "natural" weight, the weight I was both at 20 and at 40. My hair is much thinner, my eyebrows are thinner. I am a stay at home mother but I honestly don't think I could hold down a full time job. If left I could sleep twelve hours or more. I really don't like my life being like this. My youngest child is only 7, and she is used to having a Mummy too tired to go anywhere. . So where does it leave people like me? Should I pay and try natural thyroid extract? Should I hound my GP for T3? Because I feel miserable enough going back and forth to my GPs saying that my hair is falling out, or I am tired all the time, and feeling rather stupid when they don't give any response as my bloods are normal? I hate seeing my GP now, I feel I must be a heartsink patient, and it has damaged my confidence.

J Clin Endocrinol Metab. 2010 Jan;95(1):186-93. doi: 10.1210/jc.2009-1625. Epub 2009 Nov 11.

I can't link to Pubmed from stupid ipad.

But if they had TSH in the normal range I would be looking for other causes of their symptoms.

Then you are doing your patients a disservice and should get reading some patient experiences.

I completely get the somatisation arguments about hypothyroidism: it is very clear that, psychologically, some people feel a "cause" that isn't about "them" is more palatable than something about personality or responsibility or just getting on with it. And I would be just as suspicious about a whole load of people rocking up with symptoms but no valid test results.

But it does seem to many SCH people that they are not listened to. I was - my GP was very willing to try it out and see if symptoms improved, but so many women are told it is all in their minds/menopause. It is not the first time women have been dismissed by medical science in this way, so perhaps GPs would forgive the social context that makes many people unable to have open conversations about this. How much of it is about somatisation, we don't know, so can we really rule out causality in the opposite direction? I know that since getting my Levo levels right, and taking B vits and magnesium, almost ALL of my psych issues just switched off, after a lifetime of panic attacks, debilitating phobias and perdiodic depression. Are you really going to reject a biochemical model here just because we don't know enough?

The frustrating thing here, is that EVERYONE acknowledges that the testing is not sophisticated enough to really work out what is going on, including the senior research endos. So it's still a best guess.

I don't know what the answer is. I would hate it if my students came in all the time waving bits of paper telling me how to do my job. If you really had time and resources, would you deal with these patients differently? I always say I could teach any student how to get a first class degree and I'd love to. But I don't have the time or money to do so. I can't get annoyed with them because they hope for a better education than I can deliver though, and I am fairly sure this is a lot of what is going on in GP surgeries around the country on this and other issues.

Why don't surgeries LEAD on communicating with their patients on things like this? Meet the professor sessions? A subclinical thyroid reading group to help people understand the significant findings? I know the answer, it's the same as the one above. But things have changed. Some of your patients now know more about the research than you. They might not understand it as well as you, or even at all. Instead of getting pissed off with them about that, why not invite them into the discussion?

Got to say, my under active thyroid was diagnosed in a timely manner, at least as soon as I approached my GP, and was well treated, has been well-controlled, no real issues. Understanding and open GPs. I've rung my GP this week about ultra-heavy periods, and as part of dealing with this she of course has recommended running full bloods etc. They've re-run bloods any time I'm feeling rough (most winters).

I think we get a great deal on the NHS... I'm in England and because of my "condition" I get free prescriptions for anything I need them for, while my friend with asthma, which makes her ill in a far more everyday way, still has to pay for all her drugs including her asthma ones. Not fair, imo.

so if your patient feels like crap when their tsh is 3 or 4 or 5, is that ok? if they then feel much better when their tsh is 2 or 1?
my gp didnt even look at me when my bloods got back to ''normal'' at 4.5. computer says 'fixed'. what a twat. luckily i just changed gp, increased my meds and now feel fine with suppressed tsh (which is just fine by Toft, that book is v good btw)
my tsh was only ever 12 or so. i had v v low vit d, constant pain, slept for hours, lived in a dream world, frozen. everyone seems to react v differently. i am also hypermobile - seems we often are more sensitive to small changes.

www.ncbi.nlm.nih.gov/pubmed/1286519

how do you find NDT, PrimalLass

i have to say, hypothyroidism is shit. treatment moves you from zombie mode to partly alive. i have never fully recovered.

could be worse, but could be better

i was furious with the gp who considered me 'cured' at 4.5 while needing an hour long nap every day and unable to do anything for more than 20 mins without a rest. yep - great - job done ffs i was 35 not 85

Primalass I'm not sure what you are suggesting with that article. The main conclusion seems to be that there is no difference in outcomes between suppressed and ordinary tsh?

It's that suppressed and low isn't a huge danger, as far as I can tell.

Check on stopthethyroidmadness for NDT suppliers.

Your first link primallass suggests treating to normal TSH levels 0.4-4 has no increased risk of mortality, and in the conclusion states that treating to low levels 0.04-0.4 probably has no increased risk. I think this is in line with what most biochemists are aiming for.

You say I'm doing them a disservice. So if a woman who is gaining weight and feeling not herself comes to me convinced she has a thyroid issue and instead I find she has ovarian cancer, that would be me being a bad GP would it?

Ouch. But medics themselves say when you hear hooves, don't assume it's a zebra.

I have, not once, turned up to my GP, saying exactly those things and had them ask/examine any of the things that might diagnose ovarian cancer.

And I imagine a whole load of ovarian cancer might go undiagnosed precisely because those women don't feel heard by their GP since they no longer trust them.

You are right to want to rule out things and not let patients self diagnose. But to ignore where their mistrust and anger comes from is crazy.

You want to tell them their symptoms might be nothing. And at the same time that they might be very serious. And that you hold all the power and knowledge. Are you surprised they are frustrated with you? You know this is how it is in medicine; they/we need some of that power over our own bodies and choices.

Do you think vitamin d deficiency could be the cause of things people attribute to thyroid problems?

I've mentioned this on another thread tonight but when I got pregnant my doctor didn't mention my thyroid at all, not the dosage or anything. At midwife appointments it wasn't really mentioned but I was the told at my 10 week check I would have to go under consultant care because of it and asthma. But that appt was an age away. No one ever mentioned my thyroid levels. I was horribly uninformed but I thought that's what seeing the doc/midwife was for. I won't make that mistake again. I was on 50mg a day then, and had a missed miscarriage at 3 months. It was only along time later that I read dosages should go up almost immediately after a BFP. So who is right? Should it? I don't want to make the same mistake again. I'm now on 175mg a day so wonder whether the 50mg was just a pitiful amount

(My doctor was totally useless and I've since changed and seen an endo)

Unfortunately, I reached the point where I had such mistrust in my GP that I do not believe I will ever get it back. I had my diagnosis of Hashimoto's, I had my little white pill that supposedly cures everything. However, I was in such pain - deep, aching pain which is impossible to describe. My muscles visibly twitched, I had muscle cramps, I had headaches, heart palpitations, I forgot words, names and even forgot where I was driving to on one occasion. I had to stop driving as I was unsafe. The list is endless, and one which many other sufferers will know. I had to start taking family members to my appointments because I couldn't string a coherent sentence together. However, I had my diagnosis, I had my little white pill, and my blood test results showed that everything was "fine".

My GPs answer to me begging for help was "what do you want me to do?" That was the point at which I very nearly used words I have never used before. I am very clearly unwell but, apparently, the blood tests are all "in range", so I cannot be ill. He didn't want to check whether I actually had anything else wrong, but wanted to refer me to a Pain Clinic. (Unfortunately, it later transpired that I had plenty of other serious health problems - all the symptoms were there, but I was not taken seriously).

I have never ever gone in demanding anything, I am never rude, I didn't ever purport to know more than him. I have never been confrontational. However, I slowly realised that I was being written off.

So I did what thousands of other sufferers did, and went internet surfing. I found the most amazing support site. It slowly dawned on me that there was a lot more to this thyroid stuff than the doctor had led me to believe. I read and read, there is lots I don't understand, but I keep reading.

It took me a long time to realise that my GP was one of the "I'm a doctor, trust me" brigade, all-knowing, all-seeing, and he knew best. Unfortunately, this is the experience of many fellow-sufferers. His inability to see past blood tests kept me seriously unwell, unable to work, and unable to function, for a very long time.

I don't want to doctor-bash, but it is so hard not to feel disillusioned and badly let-down. This is the frustrating situation other people are in too, it isn't just my bad luck with my GP. I have some truly wonderful "ologists" now, trying hard to sort out all the permanent health problems that I am having to live with which should have been treated months ago. And I have a lovely new GP who doesn't talk down to me, or as if I am an idiot.

I really don't want to rant, but so many people are suffering so badly.

here is the NICE Clinical Knowledge summary for pre-conception or pregnant women suffering with hypothyroidism.

It says

"Aim for a TSH concentration in the low-normal range (0.4 mU/L to 2.0 mU/L) and an FT4 concentration in the upper reference range."

And

"At confirmation of pregnancy, immediately increase the levothyroxine dose, and perform thyroid function tests while awaiting referral to a specialist: The dose should be increased usually by adding at least 25–50 micrograms levothyroxine; the size of the initial increase in dose will depend on the dose the woman is already taking and the TSH and free thyroxine (FT4) concentrations.
...If there is any uncertainty about what dose to prescribe, seek immediate specialist advice so that there is no delay in the woman receiving an adequate dose of levothyroxine." (one for you to quote there, indecisiveithink!)

jarofpickles I can understand why you may be frustrated by patients trying to self-diagnose. I hope that the experiences shared on this thread will give you the opportunity to reflect.

The problem is, doctors rely on thyroid function tests as though they are rock solid. I remain unconvinced. "UK guidelines on the use of thyroid function tests are based on a non systematic review of generally poor quality evidence from the American assoc of clinical biochemists. www.healthcareimprovementscotland.org/our_work/technologies_and_medicines/shtg_scoping_reports/technologies_scoping_report_22.aspx Page 2

IF you have poor tools, you get bad workmanship. As there are no NICE guidelines for the treatment of hypothyroidism, it seems most GPs are using the Royal College of Physicians policy statment, with standard of evdience? Expert opinion only...

It's a disservice jarofpickles because an 'in range' tsh does not mean it is not their thyroid. My tsh has to be borderline suppressed for me to feel well. But I am taking t3/t4 so once I explained that to my gp he was fine with it. He can't/won't prescribe it, however.

I posted that link because I took a print-out to my gp to show that my low tsh was not dangerous.