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.

Of course you could just complicate things further by having a prolactinoma too, which I have.

I so wish there was a like button!

hdalove2010, I really take issue with your tone, and some of the insulting comments you make. As a fellow thyroid patient, I think you do a disservice to a hard working health service and to all of us when you completely disrespect someone's expertise like this. You make some offensive and ridiculous claims in your post. I am not the GP in question and I am offended by it. Would you make such personal attacks to someone in person? If not, don't hide behind the anonymity of the Internet.

And more than this, you can virtually GUARANTEE that no GP or other clinician will want to engage in further in dialogue with us when you speak to them in this way. There's a huge difference between not passively accepting medical authority and empowering yourself with knowledge, which I am all in favour of, and generalising wildly and being insulting, using assumptions about the care, professionalism, background and motivation of individuals that you know little about. I think you should apologise and hope that you haven't put off GPs from further engaging with us.

Thyroid thingy I'm actually a very polite person, this is why I Have a fully supportive g.p and endo but I don't appreciate reading utter shite. None of my claims are ridiculous. I'm part of a world of thyroid patients who have been left to continue with suffering due to ignorance and lack of knowledge by so called doctors. This woman/man has come here to ridicule people who complain wth 'normal tsh' and continued symptoms. The whole system right down to the pathetic treatment is a scam. There's other thyroid treatments people so please research them and find a new gp who LISTENS if needs must. I'm not apologising at all.

I hope I put this g.p from further dealing with us. That isn't a doctor in my book. No doctor would go on a social network site spouting that. Unprofessional to say the least.

I don't think you're wrong to make your central claims, that often situations like yours are missed.

But these are your words:
"You F***s
You big pharma robot
You are not a doctor
You silly billy that's total bull crap
How dare you come on here spouting your complete and utter shite
Go away with your stupidness
Learn some patient care
What a complete imbecile
How long have you been practicing?"

All deeply personal and insulting comments that if you made them in your GP's reception would doubtless lead you to warnings about being struck off their list.

And if she/he didn't come back, I would deeply and sadly regret that the opportunity to talk to a GP about the patient perspective had been lost, therefore losing the chance to change things for future patients, one GP at a time...

A quick question to the OP, as labs have different ref ranges, a person can be deemed "normal" and not hypo or hyper thyroid by one lab however at another will be outside of the range so deemed to have hypo or hyper thyroid. Which is correct and do you treat or not?

A very interesting thread which has been picked up by other health forums which are linking to it and reading with interest!

No doubt many posting here are very well aware but even if just testing TSH, the time of day the blood is taken can produce a different result, does the OP ensure bloods are taken as early as possible in the morning when the TSH is at its highest? This can mean whether someone is considered within normal range or outside of it!

Jarofpickles – you accuse ‘Rockin of showing “a very blinkered view and a lack of clinical understanding”. That accusation applies to you too. You might know how to diagnose and treat ‘hypothyroidism, (defined as a deficiency of hormone secreted by the thyroid GLAND) that we all know can be treated fairly successfully with levothyroxine (L-T4) monotherapy. However, you appear to have a lack of understanding yourself of how the whole of the thyroid system functions – but that is understandable considering that the Royal College of Physicians Teaching Curriculum and the General Medical Council Endocrine Curriculum do not take the whole of the thyroid system into account. This is causing harm to approximately 300,000 UK citizens alone (millions worldwide) who are being left to suffer.

It is agreed that the true definition of ‘hypothyroidism’ can be easily diagnosed and treated with L-T4 monotherapy – and this works for 85% of sufferers. So, further discussion regarding the diagnosis and treatment of ‘hypothyroidism’ should stop right here. What doctors need to consider however are those 15% who are NOT suffering with ‘hypothyroidism’ and who have a normally functioning thyroid gland, yet present with, and continue to suffer the same symptoms of hypothyroidism. More often than not, their GP’s tell them they do not have a thyroid problem, often sending them away after giving them a diagnosis of CFS, ME, FM, depression, functional somatoform disorder, etc etc. instead of looking into the possibility they might be suffering with a non-thyroidal condition.

I highly recommend that every doctor read the paper published June 2014 by E K Pritchard and entitled ‘Reducing the Scope of Guidelines and Policy Statements for Hypothyroidism’ to get a fuller understanding of what doctors are NOT taking into account when trying to reach a diagnosis. tpauk.com/images/docs/reduce-scope-final.pdf

If doctors want to help their patients who are continuing to suffer symptoms of hypothyroidism, I strongly urge them to also read ‘Endocrinology’s Failures Harming Approx. 300,000 UK Patients’ tpauk.com/forum/content.php?1542-ENDOCRINOLOGY-FAILURES-CAUSING-HARM-TO-PATIENTS-WITH-SYMPTOMS-OF-HYPOTHYROIDISM where you will see a list of 52 possibilities as to why patients continue to suffer that they are not taking into account.

I am founder/chair of Thyroid Patient Advocacy Registered Charity having over 10,500 subscribers to our online thyroid and thyroid related support forum www.tpauk.com. TPA is a mere trickle in the stream – there are potentially millions of people worldwide who have been left with no option other than to join local and online thyroid support groups in order to seek the help they are not getting from their mainstream doctor.

As you are apparently having difficulty in finding evidence that TSH should be less than 2 – hopefully, the research in this link will help you.

tpauk.com/forum/content.php?1365-TSH-REFERENCES

We know that having thyroxine when you don’t need it is dangerous, but this is hardly likely to happen when the symptoms this would cause could be horrendous. Nobody takes L-thyroxine, or any other thyroid hormone replacement for the fun of it – however much some doctors believe they do.

You say you are not in control of blood tests that are done by the lab when you request TFT’s – why not? If you order specific tests for your patient surely you ordered those tests because you needed to see the results so if the laboratory refuses to do those tests, you should chase every one of them up and make sure they are done, instead of handing your patient over to laboratory technicians – who, let’s face it have no knowledge whatsoever of your individual patients.

T3 is the ACTIVE thyroid hormone, as you are aware – thyroxine SHOULD convert through the liver, kidneys, brain and numerous other thyroid hormone receptors throughout the body into triiodothyronine (T3) - but for 15% of sufferers (300,000 of the UK thyroid population), it simply does not and for doctors intrigued to know why it does not, they can check the links above. Patients NEED sites such as this one for open, frank and intelligent discussion because they are fully aware, mainly through their own experiences, that thyroid function tests cannot and should not be relied on in all cases and also that L-T4 doe not work for ALL patients.

You are correct that “a lot of people have “thyroid-y symptoms with a normal thyroid”, but what are you doing about those patients if they continue to complain of symptoms of hypothyroidism? Perhaps after reading the links above, you might do whatever is possible to get other doctors to read these too and consider whether it is within your power (and the power of other mainstream doctors) to enter into serious discussion with the RCP, BTA and the RCGP's to try to bring an end to this on-going problem and to get them to acknowledge there are many suffering many of the symptoms who have normal thyroid function test results and many who remain ill on L-T4 monotherapy.

Patients, for good or bad, had to rely, in the past, on their doctors, but in this day and age, most intelligent folk can find the information they need on the wonderful World Wide Web. All the top medical journals are now published online, and hopefully, this is where doctors also go (as I do) to keep their medical knowledge slap bank up-to-date. Whether they are doing this or not is questionable, because it does appear that many doctors in the UK are content to sit back and be told how to diagnose and treat those with symptoms of hypothyroidism by the RCP and the BTA – really believing that everything written by them is 100% correct.

The comments and questions you have raised you can find answered in any of the links above, and I hope you will do them the courtesy of reading them – because unlike your comments, everything written there is backed up with evidence citing appropriate research and studies. I am amazed that you “have never had an abnormal result” after pushing for free T3 to be tested, but, I guess it depends on what each one of us understands as “normal”.

The Differential Diagnosis Protocol (1) requires examination of ALL physical issues and potential causes for symptoms [2-4], but endocrinology ignores them. Failure to take account of the available evidence and research may amount to medical negligence.

1. Robert H. Seller, MD and Andrew B. Symons, MD, MS ‘Differential Diagnosis of Common Complaints’, 6th Edition. ISBN: 9781455707720
2. Differential Diagnosis (DDX) Definition: “The distinguishing of a disease or condition from others presenting with similar signs and symptoms,”Merriam-Webster
3. Differential Diagnosis (DDX) ”is a systematic method used to identify unknowns. This method, essentially a process of elimination, is used by taxonomists to identify living organisms, and by physicians and other qualified professionals to diagnose the specific disease in a patient. Not all medical diagnoses are differential ones: some diagnoses merely name a set of signs and symptoms that may have more than one possible cause, and some diagnoses are based on intuition or estimations of likelihood.” Wikipedia: en.wikipedia.org/wiki/Differential_diagnosis
4. Differential Diagnosis is a medical adaption of the process of elimination. These processes are based upon the logic of disjunctive syllogism,which is known from antiquity as modus tollendo poner.

As far as the Achilles Tendon Reflex is concerned, all doctors should know that a slow reflex is SPECIFIC to hypothyroidism and this test should be performed by by all doctors. You can find out more information about this here :
[M P Wise MRCP FRCP S Blunt PhD MRCP R J M Lane MD FRCP:Neurological presentations of hypothyroidism:the importance of slow relaxing reflexes. J R Soc Med 1995;88:272-274]

I also refer to a table showing the functions of the greater thyroid system, only half of which is presently being considered by mainstream medicine - the other half being ignored tpauk.com/forum/content.php?675-GTS-Table – this is frustrating to both patients and doctors.

Biochemists are, indeed, very qualified to have an opinion – but so are patients. I am not sure, through what you are saying whether you believe thyroid function tests should be adhered to or not as you do state “… tests and symptoms don't correlate well in reality”. You keep telling us that symptoms of hypothyroidism are not specific, yet research by Barsky et al., and Basier et al., [Barsky, A., et al.: Functional Somatic Syndromes. Ann.Intern. Med., June 1999, Volume 130(11):910-921, 1999] and [Baisier, W.V., Hertoghe, J., and Beekhaut, W.: Thyroid Insufficiency:Is Thyroxine the Only Valuable Drug?, J. Nutrit.Environm. Med., 11(3):159-166, 200] found patients suffering 8 or more symptoms of hypothyroidism are indicative of hypothyroidism and should be treated.

Please remember that those patients complaining of continuing symptoms of hypothyroidism who have normal thyroid function test results may be suffering with euthyroid hypometabolism, or low T3 Syndrome and that this condition cannot be treated with L-T4 monotherapy. This condition must be treated with T3. We cannot live without T3, but the RCP and BTA have virtually banned it. Even CCG's are now refusing to fund the prescription of T3 for those doctors who are legally prescribing it for their patients and that is making their patients well. Just what is going on - and why are doctors allowing this to happen?

I don't know thyroid thingy, maybe nearly losing my life at 26 and leaving my young children due to that very attitude made me like this? I repeat that I am polite in person, but I've never come across that attitude with my health professionals. You won't learn anything from that person. I work within the Nhs for a doctor and he is a lot broader minded, he agrees the tsh should be at the top end of the range in thyroid patients and he supports ndt. That's the kind of person you will enjoy engaging with. Not this moron.

Campaigner thank you for putting it in a lot more professional wording then I did, I guess I Lost my temper once I got to 'thyroids' symptoms. Does she not realise how truly ill people feel with this disease. I was seeing shadows in the corners of my eyes towards the end, I kept telling the doctor that something wasn't right and nobody would listen. I had to beg for a thyroid blood test at my daughters g.p appointment. They kept saying 'you have just had a baby'.regardless of the above post I am over the anger of what nearly happened and being left still poorly. I became an advocate of my own health. Learnt how to be tactile with my g.p, and found a great private endo. I'm glad there's a world of thyroid patients out there who help and advise each other. If i trusted my gp to do this research I would be bed ridden by now.

Dr toft BMj thyroid health book sold in chemists etc states most people feel better with a tsh under 2 I know I do since my Levo was increased. I don't think people are obsessed jar of... I think lots are not managed well and some are not converting and some are not suited to Levo it happens! Really were stuck with The tsh test and Levo. Most of us! No other thyroid related tests, labs refuse them, we are not all obsessed, we as patients have access to a lot of medical info and understanding what's happening helps a lot! It did me! I actually enjoy and absorb all the info! I know people who medicate themselves with nth etc as they feel they have no choice and are doing well after years of ill health so all these people cannot be wrong! I would never self medicate! I'm not that confident but I can understand why some do when you see how well they look and there actually living again! Just want to thank you for posting too as don't know about anyone else but having a gp read what we have to say is great, I just hope you learn from us too from the patients perspective.

What hda is saying is right there is thousands of us Hence all the support forums if life was wonderful from a tsh test and Levo these support groups would not exist!

Thyroidthingy thanks, I'm fairly thick skinned, but yes slightly harsh comments from some! I'm really not an ogre you know, I genuinely want to see my patients get better. My point was, people are very quick to jump to 'it must be thyroid', and yes sometimes it might be, but to narrow down your focus too much/quickly can lead to diagnoses and solutions getting missed and as I've said, potentially dangerous unnecessary treatment. I still wouldn't treat someone on the basis of a TSH of 3 or 4 and symptoms alone, I just don't think there is the evidence behind it and again, I am putting patients at risk of harm.

However it has been really interesting and thought provoking reading your experiences and the links and I have certainly taken some things away. I think I could be a lot more proactive in screening at risk women preconception/in early pregnancy and treating as appropriate - I agree I think this is a poorly understood area amongst GPs and is clearly important. I'm also certainly going to look further into this treating to a TSH of 2, I'm going to need to do more reading about this. But look I already do put people on t3 sometimes, I do hassle the labs (which a lot of my colleagues don't), our practice did have a few pts on armour before it was totally outlawed by the ccg, so I don't think I'm totally one of the bad guys!

Can someone describe/explain the Achilles reflex thing to me? How sensitive is it as a measure? It is specific to hypo, right (but also other conditions according to a reply to that article)? So is it ALWAYS present in hypo patients, and does it relate to replacement therapy...? That is, could it provide evidence of insufficient replacement or need for other testing in someone already being treated?

Also campaigner77, on your link to references on the testing issues, most of those sources are pre 2005, some much older. In medical science this is virtually prehistoric. Have you also traced the trajectory of research forwards to more recent sources? Or have those issues disappeared from the field for good, scientific reasons? This is a genuine, not a narky question, by the way! I realise it might sound challenging, but I think it is important to do the science on its own terms to win the argument.

I can understand why you as a gp would not treat someone with thyroxine with a tsh of 3 or above but the TSH test is flawed so maybe as a g.p you could say well ok, let me check TPO antibodies and if they are high you could schedule follow up blood tests to keep an eye on the TSH instead of dismissing the patient as normal. A lot of women have had miscarriages due to how poorly managed thyroid disease is and before I had any thyroid problems I too was completely ignorant to it. I'm very passionate about the diagnosis and treatment now and I amongst others want and need change. GP ask yourself, if somebody is on t4 only treatment, does alarm bells not start ringing when they start getting high cholesterol, high blood pressure, depression etc? I don't understand why some g.ps don't 'get' the link between under treated thyroid and other medical problems. My 'high normal' tsh climbed to over 100 before anybody noticed. I nearly frigging died because of that attitude of relying on labs instead of someone just listening to a patient and their symptoms. My child although very healthy has delayed expressive speech and he has to have further investigation now. That could be due to be being hypothyroid while pregnant and not realising. The whole shoddy system makes me angry!

Thyroid thingy, the big PHARMA companies will not fund further trials because they cannot PATENT NDT therefore it's lost dollar! This goes further then the nhs. A lot further.

Another one here who was told I was in range , but felt extremely ill and had a strong family history of underactive thyroid ,I had just about every hypothyroid symptom going, no one tested my antibodies till I went private and when I saw a private doctor he told me I could not function at the levels my blood was showing, so much for normal range!

Lots of people feel let down myself included, someone told me when I became ill you will have to become your own thyroid expert and it's true , no one will help, I was told by my GP I had chronic fatigue syndrome and left at that, luckily I am thrawn to use a good Scottish word and refused to accept it. I am slowly getting back to health thanks to the information I received through the internet. Why can Gp's and NHS endos keep up to date? At least one GP in every large practise should be aware of trying T3 alongside T4 or NDT or LDN to reduce antibodies are all having good results. People diagnosed as chronic fatigue or other things can be helped and educated by internet groups,sadly not GP's or some Endo's

No 3 should read; Not getting Thyroxine when you need it is dangerous too
and note I said when you need it ie if you are hpyothyroid symptoms and ill health, not just going by blood tests alone, many feel we could fax our results in and then Dr's can tell us how we SHOULD feel, The whole system is shocking needs investigating and completely overhauled but as it mainly affects women this will never happen.

Good grief it's like a hornets nest here! I am hypothyroid,have psoriatic arthritis,reynauds,long term vit d deficiency. I still feel like total crap with many thyroid symptoms still remaining. But I am going to defer to my GPs wisdom as I know there is so much overlap with auto immune illness'. Sometimes it's not always the thyroid as my last test recorded a tsh of 0.49 and yet I am still shivery cold and skin is like a wrinkled prune amongst other things. Yes some docs are dinosaurs,hell I have met a fair few but I also realise thyroid disease is not everything.

Another issue is like to flag. Going back to the tusted tsh blood test. What about people with secondary hypothyroidism caused by pituitary gland failure? The lab does a tsh test, sees it's normal then investigates no further and doctor tells patient that they are normal. Like people have said above they then get told its CFS or fibromyalgia. whwn actually unbeknown to everyone the thyroid hormone in the body is actually low and the TSH cannot rise due to a damaged pituitary gland. This does happen a lot and again it's due to relying on the bloody TSH test! It's outdated and flawed! They knew how to treat hypothyroidism better in 1920 then they do now! Doctors relyed on symptoms backs then and NDT was the only treatment until the medical companies got their greasy paws all over it.

Iloveavery hate to say it, but your shivery cold is because your treatment is insufficient. Get free t3 checked is my advice. I'm auto immune also, apart from thyroid and vitamin d deficiency I'm otherwise healthy. So my ongoing symptoms and the awful dizziness was thyroid related. Different medication helped me. It wasn't an option though, I had to fight for it. And that's not right. It shouldn't be a fight when it's available to prescribe on the nhs.

Yes and I hope we can stir it up like a hornets nest! then some woman who feel ignored misdiagnosed and fobbed off even though we have horrendous symptoms can be heard at last! What RockinD has said is spot on, I am able to go back to work part time now but would have been left exhausted sitting at home with no quality of life if I had listened to my Gp and NHS Endo. I have auto immune thyroiditis , also called Hashimotos disease and it ruined my life for three years and it is still having an effect but without the support of internet groups I would not be back to where I am today I still have a way to go but the treatment of thyroid conditions is terrible and needs reform.Perhaps a mumsnet campaign ?

For goodness sake. Again, no one is saying it is always the thyroid.

Yeah yeah .... Ten years and 6 GPs before my hypothyroidism was diagnosed. They all toldd me to eat less and move more.

I will only ever go to a functional physician and am happy to pay him.