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.

eyebags

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.

You wouldn't.

You tried armour and it made you feel worse.

Had it made you feel better and not had any adverse affects, you would be one of the people on here saying how much better you felt thanks to those who advise you.

Nobody is saying that anyone who is ill has a thyroid problem, just that for many of us, a comprehensive list of symptoms and contributing factors has been completely ignored in favour of diagnosing 'women's problems', depression or in some case, "nothing wrong at all, suck it up", while our lives go down the toilet.

Wonder why people are so angry?

sorry, re-bolded to show quote from eyebags!

eyebags 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.

You wouldn't.

You tried armour and it made you feel worse.

Had it made you feel better and not had any adverse affects, you would be one of the people on here saying how much better you felt thanks to those who advise you.

Nobody is saying that anyone who is ill has a thyroid problem, just that for many of us, a comprehensive list of symptoms and contributing factors has been completely ignored in favour of diagnosing 'women's problems', depression or in some case, "nothing wrong at all, suck it up", while our lives go down the toilet.

Wonder why people are so angry?

I've started to reply to this thread about six times and deleted it. As an American, living in the UK, I find the attitude towards hypothyroidism here deeply, deeply distressing. Just to state - I am not advocating for an American style healthcare system, which I think is beyond flawed to the extreme. What I do find troubling is that at this point in time, the NHS seems to have such a very rigid doctrine of acceptable treatment that all practitioners must stick to with such unblinking adherence that policy becomes belief and critical thought and individual assessment fall by the wayside, if that makes any sense.

I also don't really understand why it has to be an either/or situation? Diagnose hypothyroidism or investigate other causes of symptoms? Why not both? Surely further investigation can be done concurrently with doing a trial course of mild thyroid replacement to see it it alleviates symptoms?

I agree that the online groups also have a somewhat dogmatic approach to a different set of possibly fallacious beliefs, but when you read on them, and see story after story after story of lives tragically ruined and wasted because practitioners are unwilling to step outside of rigid proscribed boxes, it's easy to understand. Desperate people will do desperate things. I am not by nature a self treater, however, there is no question in my mind that had I not had the family support and, yes, money to go private, I would have essentially ended up either bedridden or self-treating.

I was first diagnosed as Hashimoto's hypothyroid nearly twelve years ago, after the birth of my oldest child. I skipped along merrily on thyroxine for about 7 years and then, I don't know, it just didn't work any more. I gradually developed a series of symptoms - high blood pressure; high cholesterol; funny heartbeat; an infected toenail that wouldn't heal; series of sinus infections that lasted, literally, for three and four months, requiring steroids and four and five different antibiotics to treat; an allergic reaction to one of the antibiotics; dry eyes, mouth and nose; bilateral tennis elbow; fibromyalgia-like muscle aches; breathlessness.

I went to the gp so frequently that she started to talk about depression. I went to one of the most highly respected endos in the country, who told me it couldn't be my thyroid because I wasn't fat. To go home and 'stop eating chocolate' for my cholesterol. When I told him I wasn't a big chocolate eater, he told me all women were, even the ones who didn't admit it, and that it was probably early menopause. I watched myself start the descent from someone who ran 30k a week and juggled three kids, two dogs, freelance work, volunteering and a social life, to a chronically ill person.

Fortunately, a chance visit to a different ENT for one of my dozens of sinus infections resulted in a diagnosis of borderline low T3, literally just under the lowest margin by a hair. A visit to a new endo resulted in a combination T4/T3 treatment. Within a week, I was a different person. Within two months, almost back to my old self, and now I am.

I'm currently on a combination of NDT and T4 (under an endo's care) and literally every symptom listed above has gone. I have not had antibiotics one single time in the 3.5 years since I switched away from T4 monotherapy. Blood pressure and cholesterol normal, tennis elbow gone, back to running 30k a week.

Is it psychosomatic? I suppose it could be. But who cares? For now, anyway, it's working. I also know my TSH is very suppressed, and I understand that there are some long term risks associated with that, but you know what? I'll take having a full and rewarding life now in exchange for protecting a future that will feel worthless if I have spent all the years leading up to it lying in my house watching the world go by.

jrb1 - some of the stories from US patients on the thyroid support sites are not any better, unfortunately.

Oh, I agree - they're not fabulous at diagnosis there either.

But what they don't have is labs overriding doctors on tests ordered (T3 levels), or, in my experience such total adherence to TSH as the only diagnostic tool. And when it comes to TSH the threshold for treatment is (or at least was) lower. I also think that, since NDT is licensed there, once diagnosed finding a doctor willing to try it is easier. I would suspect that getting diagnosed with subclinical hypothyroidism is no easier there than here.

Sadly, though, what we do have here is the same as there now - people with money and support can most often get the treatment they need, and people without can't. And to me, that goes against everything the NHS should be.

I was having a strange conversation with MIL after my run in with the GP who fobbed me off. She was saying how bad its gotten in all the time she's been seeing GPs, they used to pay attention to you and your symptoms and didn't rely so heavily on tests. We wondered whether the quality of GPs is declining or their hands are tied so much by the NHS they can be virtually useless or if its both. We couldn't come up with the answer. But the following gem did fall from my lips:

I had a Dr when I was a child. He was regarded as the bad Dr in the surgery, he occasionally gave out very odd advice and missed things to a higher degree than the other Drs. But he always listened, never made you feel uncared for and in my case picked up some things other Drs had missed totally. I half wish I could go back and see him. Oh he's not retired, he's been struck off for sexually assaulting some patients

I think that may be the most telling statement about the current state of general practice within the NHS I can ever make.

i know someone hypothyroid who moved to the uk. their gp took them off thyroid meds,,essentially to see what would happen. they tested tsh. it was fine. gp proclaims patient is not hypo at all so no meds
fast forward 6 months
poor friend hospitalised as so ill with hypo connected symptoms
put back on levo

there went six months of her life (longer really,getting back to normal)

A colleague, who is clearly hypothyroid was put on 25mcg levothyroxine and, when it didn't make any difference to her symptoms, as it wouldn't in many cases, was taken off it and told she obviously didn't need it.

I've also known people be given enough to bring their levels back into range, at which point they are told they are fixed and no further medication is prescribed.

I was given 25mcg five years ago. It suppressed my thyroid function and made me feel worse. A consultant told me that if I did not feel better on levthyroxine I definitively did not have a thyroid problem and took me off it, even though I was begging for an increase.

FF three (lost) years and it turns out I just needed enough of it!

Rockin out of curiosity, what were your levels at when they put you on 25mg? I didn't realise that if your dose is too low it can make you feel worse. I'm just trying to learn as much as I can.

ITrulyMoustache My GP was in front of the BMA for shagging a patient. I really liked him.

Pat1ence They do say that the body may recognise a small dose of thyroxine and reduce the residual thyroid function to take this into account. This results in there being less thyroid hormone than before and a worsening of symptoms. That was my experience and it took months to get over it.

As to levels, my TSH has never been reliable or in any sort of usual relationship to FT4 and FT3, so although at that time my TSH was under 2, my FT4 and FT3 were both in the bottom third of their reference ranges. I don't think you can use me as an example really. I may be a slightly odd case.

Best place to learn is the ThyroidUK forum on www.healthunlocked.com. They have a different agenda to TPA and may be more helpful if you are at the learning stage.

Just had a quick browse through this last page (iPad) we know drs hands ate tied with what they are allowed to do..... So those higher up should be be made to answer to the thousands in this country alone! Nhs COULD dpsave lot of appointments and money if this was addressed properly! ! The people who are voicing off are people who have been on receiving end of inadequate treatment not people who THINK they have a problem!!!

I have health issues (not thyroid related) and I have noticed that there is small but very vocal minority (not talking specifically about MN) who like to think of themselves as the spokespeople for the poor, oppressed patients. I've seen people force the issue and pigeon hole people down the thyroid route and wind others up into a frenzy until they are convinced it is definitely their thyroid. I don't have a problem with suggesting it but some people really do think that everything is down to thyroid issues.

I once made the error of mentioning that I have an enlarged thyroid gland and got told I must have thyroid issues and I must push my GP. For what? I've seen an endocriniologist. Of course, this wasn't satisfactory and someone demanded to know what I'd been tested for and what my results were. Apparently, random internet strangers know more than a specialist who's trained and experienced in the area. No thanks!

primal glad I'm not alone!

jarofpickles or other GPs on this thread: I'm seeing a different thankfully Dr tomorrow again regarding potential thyroid issues. Would you consider me a complete £$%&£ of a patient if I asked for the basics as outlined in the NICE guidance? According to that my GPs should have run TPO-Ab plus had me back in to run TSH, FT4 and TPO-Ab levels 3-6 months later. I've since had TSH rerun (a year later thanks to symptoms worsening), but not FT4 and never TPO-Ab. I'm planning on asking them to at least run all those before considering fobbing me off again. Am I going to pee them off? I'm also planning on asking for vit D to be checked as several family members have had deficiency in this along with as pernicious anaemia and thyroid issues (my mother just managed to get that one confirmed for me!). I'd also like to ask for FT3 is its available but will take on board that it may not be that simple. However I'd be happy with just having tests as per the NICE guidelines and won't stamp my feet.

I am not sure whether you will be able to access this link, but if you can, you will find a wealth of information about pregnancy and hypothyroidism.
tpauk.com/forum/list.php?category/333-Pregnancy-And-Thyroid

I think that ordinary readers to the website can read all the articles in our 'Treasure Chest' but if you cannot, it might mean that you will have to register to join our forum before you can get access. Let me know how you get on. Meanwhile, you should be referred in the first trimester to an endocrinologist who specialises in pregnancy and thyroid disease. You should ask for Thyroid Stimulating Hormone (TSH), Free T4, free T3 and thyroid peroxidase (TPO) antibodies. Ask that you be given access to your results when they are returned and the reference range for each of the tests done and post them here for help with interpretation. It is essential that your Free T4 is well into the upper third of the reference range. I would also ask for your levels of iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3, magnesiuim, folate, copper and zinc to be tested and make sure you get those results and ref. ranges too. Too many doctors will tell you that your results are normal if they are returned anywhere within the range, and then tell their patient they do not have a problem - and this is not good. We need to know whether they are at the top, the middle, the bottom or even outside of the ref. range.

Edsheeren I am one of the so called poor oppressed patients who needed all the advice I could get after my brilliant Endo sadly passed away. I was left with an Endo whose main interest was obvs diabetes or other disease because he was not up to date or knowledge about treating my thyroid condition.

Thanks goodness for the spokespersons on Thyroid websites I found the path to health, these random internet strangers knew what was wrong with me more importantly they helped me in my health struggle, it might not have worked for you but don't knock others in desperate need of being helped.

Sadly the Endo's I have seen leave a lot of room for improvement, if I didn't listen to people who needed my help,was that out of date with modern ideas and had such a rigid focus I would be out of a job , sadly in the medical profession we call them specialists.

I've registered to post here. The GPs do unfairly, in many cases, feel the wrath of thyroid patients when we have been routinely dismissed by Endos as somatoform when still ill on Levothyroxine. Not GP's fault per se, but they could most definitely do more. Certainly I thought they'd apply their educated minds to ask searching questions of why a complex endocrine dysfunction is allegedly so easily remdied by one synthetic prohormone a day. They also need to look closely at the science behind these thyroid function tests they place so much trust in.

I asked for evidence that Levothyroxine is a safe and effective treatment for hypothyroidism, am still waiting. Neither the RCP, European Medicines Angency, MHRA or NICE could provide any. As someone mentioned, the guidelines on the use of thyroid function tests are based on a non systematic review of generally poor quality evidence...Is that good enough? I don't think so.

I have petitioned the European Parliament and the Scottish Parlaiment on this disgraceful issue, a health scandal affecting mainly women. I am only well enough to fight on thanks to Thyroid UK and internet forums. It most certainly is not thanks to GPs, Endos and the NHS.

Well said Lorraine. I follow your page on Facebook, and want to again say thank you for all the work you put in.

Thanks PrimalLass Feel like I never shut up about thyroid issues these days, and it's not because I'm a sad, lentil weaving hippy who wants the world on natural thyroid. I just want folk to have choice and hormones that work for them!

When I think back to how I've been dismissed, it still shocks me. I had such faith and trust in doctors, am sure we all did. I still want to be treated within the system, I still value my gP but I have to go it alone. They took my thyroid and left me to rot with below range T3 and the bullshit Fibromyalgia diagnosis. I've spoken at GP conferences in Barcelona and Ireland and am about to write something for the BMJ - we can't just dissapear and let medicine think it's all sorted. I know there are good doctors out there who want to help us but are prevented by guidelines. That's fine, but they have to also raise their heads above the parapet a little and question why they have so many heartsink patients, mainly female, and ask how they can satify themselves they're practising evidence based medicine when almost 50% of trials remain unpublished and these godforsaken TSH tests are considered gold standard on very, very patchy evidence.

away I'm glad you found advice but surely you can see that when you're ill and scared, having something aggressively shoved down your throat online is unpleasant. The difference is that you sought it out, I did not. My experience is just as valid IMO.

By the way, I am really at people calling fibromyalgia a "bullshit diagnosis". It may have been the wrong dx for YOU but it is not bullshit. Maybe try to think about how your words may make fibromyalgia sufferers feel!

Lorraine - you are an inspiration. I'm too unwell to fight for myself and I hope your petitions and other work will make the difference to do many people.

I want to thank the OP for starting this thread and being willing to engage with thyroid patients.

I am very lucky as I have a fantastic GP who respects my opinions and research. I was very ill pre diagnosis and unfortunately T4 didn't help. My TSH did come down a bit and my T4 rose to near the top of the range, but my fT3 actually dropped and eventually went below range.

I had some great advice from Thyroid UK (who by the way do NOT advocate self-medicating).

I persuaded my reluctant endo into giving me a trial of Natural Dessicated Thyroid. It has completely turned my life around. All of my symptoms have gone and I have great in range levels of T4 and fT3 that my endo is very happy with. My TSH is suppressed though and my endo is ok with this as my my other results are in range.

My GP has taken over prescribing my NDT and both are amazed and delighted at my recovery . I wish other thyroid sufferers had such open minded doctors as I have been lucky enough to find.

EdSheeran you all you like, it is a bullshit diagnosis, a medical name stuck on a bunch of symptoms they don't know the cause of. In my case, complete body pain caused by lack of hormones after thyroidectomy. Fibro sufferers will never learn the true cause of their pain or fatigue if they rely on that label, incidentally, a label most doctors scoff at too.

Thanks Corabell

www.thyroiduk.org.uk/tuk/related_conditions/Fibromyalgia-medical-mystery-solved.html

I know lots of folk diagnosed with Fibromyalgia will have thyroid function tests and hypo ruled out, but as I said, the tests themselves are questionable. There are many undiagnosed anemic patients walking around with mistaken Fibro diagnosis too, thanks to utterly inadequate b12 assays. These modern labels came about only forty or so years ago, oddly, not long after the TSH test was deemed the saviour of thyroid testing.

I never, ever assume someone coming to me is hypothyroid. I don't want to oversimplify their illness the way many doctors do, usually by proffering an antidepressant prescription and advice to avoid the internet. They need to be encouraged to really research all possibilities because they sure as hell won't get that from their doctor. Why is that so? Well, am not GP bashing. They are utterly snowed under with QOFs and guidelines and targets and do their level best. But the fact remains, their best is not good enough so patients have to take up the slack. Sitting around blaming the system won't get us anywhere or improve our health but blindly accepting antidepressants and pain relief will also not cure the underlying disease process. More GPs like Marmitelover55 would be just wonderful. My own GP is new and interested and I appreciate her but it took me a long time to find her. I can understand why they become jaded with heart sink patients but the answer is not to give us pain relief and catch all labels, it's to find the source and heal.