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.

Preach it.

So many times I've wanted to say similar about a range of diagnoses or 'fact' by MNetters. Mind you, a fair few teachers must be biting their tongues all the time too.

May I ask your opinion on my latest test results? I have a TSH of 10.6 and FT4 of the same. Family history of Hashimoto's and under active thyroid. As you say, my results were an incidental finding on routine pre-IVF bloods. However, I sm symptomatic. My consultant has said these results wouldn't be causing my constant fatigue but something is. I am developing a bald patch at the front of my head, I catch cold every 4-6 weeks, I feel unmotivated and breathless. I want to do things but don't have the energy. My nails are brittle, new hair growth brittle and coarse. I wake up feeling hungover daily despite not drinking and being hydrated.

I was convinced I was low on iron as I usually am but according to my results I'm not.

The NICE guidelines do state that women wanting to conceive should have a TSH below 2. Would you risk an IVF procedure in my position?

Something about me doesn't feel right. I'm not the woman I used to be. I don't want to mistrust my doctor or my GP (who I haven't spoken to yet) but the joint pain and life altering malaise I'm feeling is making my job as a carer impossible. I don't want my DC's life to be affected by my health. He depends on me for survival.

I'm worried that in the 6 months I wait for a retest that I'll get worse. I'm struggling with the basics.

I hope you're right and it will self resolve but with my family history and the current infertility situation and lack of ability to keep up with caring like I used to, I'm scared.

Well said OP.

Sadly, the GP bashing, as you call it, comes about because thyroid patients do generally get a very raw deal from the NHS. If they did not, there would not be thousands of members of the various patient forums, without which, for example, I would be stuck with a CFS diagnosis and increasing disability.

I am aware that some people who are diagnosed have no symptoms, but do they?. I have a friend in this position, who says she has not, and has never had, symptoms and was diagnosed after a routine blood test following an infected insect bite. In fact she is exhausted, has lost her eyebrows, has pretty much become a recluse and her weight is increasing year on year. She has a TSH between 4 and 5 and her doctor reassures her that all is normal. Sadly, she does not correlate her symptoms with her condition, because of the reassurance she receives from her GP, who clearly has no idea how to treat thyroid disease.

Much research has been carried out in this area and it is clear that in most healthy people, the TSH will be less than 2. The NICE guidelines specify that it needs to be less than 2 for TTC or PG. Again, many Gps do not appear to realise this and I wonder how many MC in the average year are as a result of Gps failure to support patients in this situation.

I am also aware that symptoms can be very non-specific, but signs are a different matter. Do you look at signs, or do you just go by the biochemistry? More to the point, how do you define normal? My TFTs never left the reference ranges, but I was very unwell indeed and thyroxine has changed my life.

No-one who didnt need thyroxine would want to take it. Thats clear, but Im now on 150mcg and have no signs whatsoever of over-replacement yet, as I say, my TFTs never left the reference ranges. Of course, the range in the UK for TSH is wider than in any other developed country.

Can you explain to us why the lab can over-ride a GPs clinical judgment? How can this be right? If you understand even the basics, you will know that some people are genetically unable to convert T4 to T3. Without a FT3 test you will not know this. You may see a nice low TSH responding to a good level of FT4, but without good conversion, your patient will be very unwell. What do you do then? Do you diagnose CFS or FM?

As you keep using the word normal, I fear you are relying on the biochemistry and not using clinical and observational skills. When I had a TSH within the reference range, I also had visible symptoms of hypothyroidism (hair loss/ weight gain/crushing fatigue etc etc) and physical signs, yet in ten years no doctor ever palpated my neck or took my temperature and the one who did test my ankle reflexes, and find them almost completely lacking, did not understand the significance of her finding.

I can't answer for pickles but my reality is that I get to make very little decisions about what is available to me. Committees of biochemists, managers, pharmacists etc much higher up the food chain get to decide which tests or treatments are available and it doesn't matter about our clinical judgement!

And this is where the problem comes. Decisions about patients are clearly being made by people who never actually see patients, just vials of their blood or, worse still, spreadsheets.

For a thyroid patient for whom thyroxine is not effective, either because of conversion problems, or allergy to fillers, or low vitamin and mineral levels, the whole thing becomes a Kafkaesque nightmare and that's always supposing you can get as far as getting treatment in the first place!

There's a thread on here called 'My doctor thinks I'm clinically depressed' which is actually as clear an indication of under-treated hypothyroidism as you will get and another life ruined.

The ludicrous thing is that the untreated and the undertreated are often diagnosed with CFS/ME or FM, conditions for which there is no diagnostic test and no treatment according to the NHS patient focussed website. That's convenient isn't it? If I'd accepted the CFS diagnosis 5 years ago, I would be housebound now, if not worse. Instead, I am working full time and living a full and active life.

Where did doctors lose the concept of treatment making the patient well? Thyroid forums and online thyroid groups are full of people (often middle aged women and therefore invisible) who have not been well since diagnosis, as well as for many years before.

Rockin I think your posts show a very blinkered view and a lack of clinical understanding. To answer a few points:

Yes I do examine patients for signs. Most thyroid patients don't have a goitre. Heart rate is one of the measurable signs of thyroid disease, but again can be normal (and again there is a large range of normal!!). Ankle reflexes? Really? Ankle reflexes are very hit and miss and I would not base an opinion on them!!

Biochemists are consultant medics. They are very qualified to have an opinion. We talk on the phone about patients. I had a patient where their bloods didn't make sense, I discussed the case on the phone, their samples were then sent to a far flung place for extensive testing with different assays. From their symptoms and signs I thought they were going to come out hyperthyroid. They actually have subclinical hypothyroidism. Again, tests and symptoms don't correlate well in reality. If you say to people, you must be hypothyroid, look for signs, most people can find some symptoms. Because they are non specific.

Again, taking thyroxine is dangerous in the long term if you don't need it. There's a recent paper showing the increased mortality rate in older people who are treated to a lower TSH. We have to be careful, and I think your advice to people is potentially dangerous.

As a GP, I do care, and I do understand the science, and I support patients wanting to make sure things are done thoroughly and that's why I do push for things like free t3s sometimes. But again, I've never had an abnormal result doing this. I try to keep an open mind with regard to the differential diagnosis. I think you would do well to do the same and just be a bit more cautious in the advice you give out on here.

Oh and 'middle aged women' are by definition going through massive body changes... A lot of things can contribute to their symptoms.

Pat1ence, I agree I would look into that more if you are preconception. If I was your GP I would ask the advice of the endocrinologists, so your GP may be able to do the same. Good luck with your IVF!

Thank you. People around me are making me think it's all in my head. Your post has made me question if it's all in my head. Friends are telling me I'm "just stressed". My DH laughed at me a few months ago when I made an apt armed with a checklist of thyroid symptoms. I ended up throwing it in the bin and cancelling the apt. Now look at the position I'm in.

I understand reassuring patients like me must be difficult. I can't get involved in the debate as my brain isn't working as it usually does, I can't think of words or a way to put my argument across. Whether it's my thyroid or not, something is making me feel like I'm losing my mind, the only anomaly on bloods has been high TSH and low end T4, if it isn't that then maybe everybody is right and I am.

www.turner-white.com/pdf/hp_jan04_thyroid.pdf

I'm a historian, not a doctor, but I have heard of Woltman's Sign!

I'm not advising anyone to do anything. What I'm saying is that while doctors may feel under pressure, I, and thousands of others, believe that thyroid patients are getting a raw deal in the UK, for all sorts of reasons, including the fact that doctors rely too much on test results that they often do not appear to know how to interpret.

As a result of this I slipped through the net for ten years. Ten years of appointments for each and every individual symptom, ten years of diferential diagnoses, ten years of ever increasing pain, exhaustion and disability, all of which disappeared when I was finally treated with thyroxine.

I am active on various forums and every day I read horrendous stories of pain, suffering and wasted lives. I consider myself lucky to have escaped this fate. In Europe it is acknowledged that there is now an epidemic of thryoid disease caused by Chernobyl. If it is not happening here as well, what is actually wrong with all these people?

If TFT results are 'normal', and you have yet to define this term, what else would you be looking at?

I'm really interested in a GP's view on these matters.

I was diagnosed a few years back as borderline, and with retesting hypo. I came across the various patient lobby groups which I dismissed initially as pseudoscience and woo, and I still think much of it is.

But I'd be really interested to hear of your clinical view about the edges and boundaries of the science, and how that interacts with the economics of clinical practice in the NHS.

Of course, many other things cause hypothyroid-like symptoms as you say, particularly in middle aged women. But there are real differences in clinical practice globally. Why is it that US endocrinology recommends a much lower TSH range than the UK? Is it because of real differences in the science, or more about the impact of private healthcare on triggering intervention?

If it is the latter, it might be quite reasonable for the NHS to have a higher tolerance of borderline TSH levels, as an institution.

But those of us who are treated but don't feel completely well might take a different view.

New NHS policy is asking us to take personal responsibility for our health, precisely so we DON'T darken your very busy doorsteps with pointless demands.

I am quite happy to do that, but it is hard in the NHS to get personalised healthcare in this way, and outside the NHS is full of charlatans, muggers and woo merchants. It is precisely BECAUSE some of us trust you and respect your training that we want to have these conversations.

For me, for example, I have a whole raft of subtle "middle aged menopausal woman" symptoms, some of which might be an under treated or clunkily treated thyroid, or they might not. I am looking down the barrel of heart disease and diabetes if I don't get on top of my weight and mental health issues. Are these thyroid related? I don't know, but my TSH certainly goes right back up if I miss treatment and it has progressively declined.

I am also quite prepared to accept that the continued other things might not
Be thyroid related, after all, lots of people do have the same stuff. But when I look at it overall (life history of digestive issues, weight loss and gain without really trying, anxiety/phobia/depression, heart murmur and palpitations, food intolerances, and more recently, forgetfulness, hair and eyebrow thinning, dry itchy skin, cold and, it turns out, a bit of a family history...) then I begin to see a pattern. I have another 20 years of hard intellectual work before I can take my pension, and my youngest child is 7. I really can't afford NOT to take responsibility for it. I want to rule out all possible treatable things.

Personal health care responsibility should be about patients knowing themselves well. We are not clinicians, but we're not stupid or passive either. I read quite a lot of clinical literature and try to decipher it but of course, I really need a GP who isn't too rushed, who can be a partner to me in working it all out.

People like want me to try and optimise our health, and sometimes what seems like an odd and subtle syndrome of things seems to connect together. I was completely shocked to find that my plantar fasciitis and chronic bladder infections are common in hypo people. What to make of this? Just the confounding variable of being a middle aged woman? Maybe.

But when I read one of the woo sites about supplementing with magnesium, my PF improved dramatically and my mental health improved dramatically. When I took high dose long term antibiotics and found my chronic infections previously diagnosed as the made up condition "interstitial cystitis" subsided, against current NICE guidelines, and in the process found many other "IC" patients who also had concurrent autoimmune problems, what to make of this?

Placebo? Again, I am prepared to accept that possibility. But in the absence of good science taking such a personalised and holistic approach, and crucially, doing the good science on it, what are we supposed to do, except sift through the bad science ourselves?

Posted that in a rush, lots of garble and typos.

I am currently treated with Levothyroxine by the way, 100mcg. In an attempt to jiggle around with symptoms, my GP raised it to 125. I felt HORRIBLE on that dose, so I am really not interested in over treating for the sake of it.

I've seen the research about suppression of TSH in older people. But we are talking here about the general population, not specifically the over 70s. As you know, there is also considerable published evidence that under treating those with raised or borderline TSH has a significant impact on cardiovascular health. So it clearly a valid concern to ensure thyroid health is optimised in those who need it.

How you explain the overwhelming lay perspective of those taking combined t4/t3? Or desiccated natural thyroid? Which is that they feel better, their levels are better, their physical and psychological symptoms improve and their weight, cholesterol and blood sugars stabilise? I think the only studies comparing the more recent Synthetic treatments with older methods have been inconclusive and it would be good to see someone taking seriously a full clinical trial. But there vested interests on all side, clinical and lay, so it will never happen!

I am not a poster girl for ranty patient groups who find definitions of vague symptoms on the Internet. But I do think there is a problem with the clarity of reference ranges, treatment decisions and options for conditions that are not - even the endocrinologists agree - well understood...

Timely, thoughtful and balanced article here, from today's Atlantic. m.theatlantic.com/health/archive/2015/02/why-is-one-of-the-most-common-diseases-still-so-mysterious/385256/?utm_source=SFFB

Interesting point at the end: "there are few good studies on subclinical hypothyroidism because so little research funding goes toward non-life-threatening diseases.... But there's also a tendency, it seems, for hypothyroidism to be the disease some patients want to be diagnosed with. It's a much more satisfying explanation for fatigue, weight gain, mental fog, and depression than are the countless mental illnesses that cause many of the same symptoms. People seek solvable problems; hypothyroidism is, at least, that."

Unfortunately, jarofpickles, the experience with doctors of thousands of suffering people on many online support groups is appalling. The reason so many of those people turn to online support is because they are not getting the help they need from their doctor. So many doctors are solely reliant on blood test results, and do NOT take symptoms into consideration whatsoever. Your results are "in range", therefore you are not ill. They are not all overweight, middle-aged, depressed, lazy, menopausal women - something which you will be labelled with if you "fit" into any of those brackets.

My own GP, someone I rate highly in every other area, has admitted that he knows little about Hashimoto's (which I have). I don't understand why he doesn't read up just a little bit so that he can understand more. He is able to read the bog-standard lists of hypothyroid symptoms someone like me can have, but doesn't have a clue as to any of the associated problems. If he doesn't read them, then they apparently do not exist.

Because of that, I have suffered months and months and months of terrible (and I mean truly terrible) symptoms which finally, after months of begging from me to be tested, proved to be severe deficiencies in vitamin D, B12 and iron, amongst others. I am now under the care of a cardiologist and a neurologist, with permanent problems. It should never have got that bad. I feel very badly let down by the NHS.

I am "lucky" in that I have a diagnosis for my illness, I cannot imagine the distress patients have when they have horrendous symptoms which are dismissed by the medical profession. I often see TV doctors advising patients to visit again, and again, if they are still suffering - many people in support groups try this. It doesn't work. They end up with, for instance, a mental illness label, are told to lose weight, exercise more, cut down on work hours.

Thankfully, I now see a truly inspirational (NHS) GP at my practice. He is honest with me. He treats me like the adult that I am. I am also lucky that the (NHS) endocrinologist which I now see also acknowledges that I clearly feel better with a suppressed TSH (well below 1.0) and that as long as I feel good, then that is fine, and it isn't going to kill me.

Without my online support group, I would never have gained more knowledge and understanding of my disease. I would never have had the courage to push for more help, I was ready to lay down and die with how awful I felt, something my own GP was totally unable to acknowledge and was certainly not willing to help with - unless I wanted anti-depressants and counselling, neither of which cures permanent nerve damage, etc.

(I was a long-term poster on this site, but have changed my name for this).

That's all well and good OP, but when you present with a list of symptoms that totally match, just a few months after giving birth, and mention that your mum has hypothyroidism and she thinks that it sounds similar and say that it feels very much like when you had glandular fever as a teen, then the GP says "well you've had a baby not long ago so obviously you'll be tired and a bit down, take these ADs and see how you get on" it's easy to lose faith a bit.

When you subsequently go back 3 more times, explaining that the ADs haven't really worked, that you still feel the same and you get sent away to 'stick with the ADs' a bit longer, it is more than a little frustrating.

When a locum happens to be there when you go back again and suggests it might be worth a thyroid test, only to call you in immediately, wondering how on earth you're still standing, starts you on thyroxine and says the words "you must have been feeling very poorly indeed", in my case at least, I just burst into tears that the misery was finally over.

It still took some time and I have since had to battle with my current (different) GP for B12 tests she didn't think I needed, only to find out, surprise surprise, I was deficient in that too.

So maybe if all GPs were sympathetic and actually listened when patients spoke, didn't dismiss these sort of symptoms as just 'women's troubles' (my mum was told that before she was diagnosed) or 'part of normal life' (since when is not being able to stay awake at the dinner table or not being able to walk 100 yards 'part of normal life' for anyone?!) we'd be a bit more understanding when told that certain tests couldn't be ordered.

Pat1ence - I can't get involved in the debate as my brain isn't working as it usually does, I can't think of words or a way to put my argument across.

This is so sad, just when we need to be assertive and persuasive is exactly the time when we are unable to string together a coherent sentence. We can't advocate for ourselves and as for jumping through the hoops we need to push for decent treatment, we may as well be asked to run a marathon.

Jarofpickles, when you say tests and symptoms don't correlate very well in reality, how does that fit with reliance on the reference ranges in clinical practice?

Do you mean, when you're making a decision to treat, you DON'T just rely on the TFT panel then?

Lyndie, does what you say, about your clinical judgement not being listened to anyway, mean you'd like to make different decisions for your patients?

What would you do, in an ideal world, with all the hypothetical time and resources, to help the patients on this thread?

Oh Dr your probally going to get the most comments to a post ever after posting this! As a graves, thyroidectomy patient of 11 years. My care had been anything but normal! The last 4 year I have spent undermedicated because of normal labs! The nhs has wasted money carrying out needless tests and referrals on me! And I finally grow some balls Cos by this time I am really fed up I'm reaching zombie status and I KNOW I'm right... I spend £130 and get my own bloods done and Guess what? Denise was right all along! Under medicated , severe vitamin d deficiency along with few other things, the latter is very common in graves patients and those who are hypo yet a dr or an endo couldn't give me this test!? Why are we left to it with our magic one pill a day? I can't blame you ... But the care is seriously Substandard ! I could write a lot more but this us my short version! Oh and after 11 year of been left with eye problems. No one bothered to refer me... That's been sorted too! Must dash I've ordered. Private blood tests AgAIN to make sure I'm been looked after! Yes we read the internet! There. Would be a lot more sicker people without it!

Interesting to hear from a GP's perspective. I am fortunate as I have a good GP who always tests T3 and TPO at my request. It is beyond me how a GP feels confident diagnosing against TSH alone or TSH and T4 even. T3 is the most relevant hormone. I know this. I don't care what any book written years ago says. I asked for my T3 to be tested as on 100mcu Levo with a T4 of 17 and a TSH of 0.3 I felt exhausted, no energy. Could no longer cope with exercise, brain fog and all the other easily dismissed " you are of the age" symptoms. When tested my T3 was well below range at 2.9 (3.6 - 6.5) no wonder I felt so ill. I went to see an endo who put me on T4/T3 combo. t3 is nothing short of miraculous. Hard to take yes, you have to go slowly but it is worth it. And if monitored why is it anymore dangerous than any other drug? My endo said most hypothyroid patients need to have a TSH at around 1 to feel well and that 40% of patients do not feel well on T4 alone but there was no money to carry out studies to investigate further. Surely a trial of thyroxine would be a good idea to see if/how a patient improves when the have "normal" TSH. Patients come on these sites to sound off out of desperation because they are not being helped. People buy medication abroad for the same reason. Life is too short to be told there is nothing wrong with you when you feel you have lost control of your life. Many of us will not accept that. I would imagine that any GP who found themselves with a "normal" TSH but gaining weight, feeling exhausted and not being able to remember what they said to a patient 5 mins earlier , would be popping Levo without hesitation to see if it helped.

OP, my TSH was 6, my endocrine consultant wanted it below 2.5 for me to conceive.

I was aware that the Thyroid uk website recommends T3 to be taken in anyone undergoing thyroid investigations.

A family member of mine was mismanaged by their GP for years, always symptomatic, until they nagged and nagged for an endo referral. Turns out they had conversion problems. The endo did T3, changed the medication and they are like a different person.

I'm a nurse myself, so not GP bashing.

Hashimoto's disease has ruined my life. I am struggling and my recovery has stalled - yet my tsh is "normal".

What do you suggest?

Can I crash this post to ask a question - I have an underactive thyroid - since 1998 (18) have been on 125 thyroxine - had two babies fine, last pregnancy was missed miscarriage & it was alluded to that it may have been my thyroid. So yesterday I found out I am pregnant (will be 5 weeks tomorrow) I am seeing my GP tomorrow to request thyroid function test (yearly check is due anyway) so please may someone help me know what I am asking for - I know it's TSH but what are the others? & does anyone have a link to the NICE guidelines someone mentioned earlier.

Sorry for crashing but could not resist so many thyroid experts in one place...

Thank you

JarofPickes - can I ask, as a GP, what is your 'aim' when blood tests show that a patient is hypothyroid? My experience has been that GP's aim to medicate enough to get TSH to approx 5. Why did GPs not aim to return newly diagnosed hypothyroid patients to the state of health they had before diagnosis?

When I was diagnosed, my GP gave me a printout from some medical guide and a prescription for 50mcg thyroxine. That was judged sufficient, even though I was sleeping for 18hrs a day, depressed, shivering with cold, brain fog so bad I couldn't read a page of a newspaper and hair falling out in clumps. It was only when I paid for a private endocrinologist that my thyroid antibodies were tested and found to be in the hundreds, when they should be under 10. I'd spent a year feeling awful under the 'care' of my GP. And no I'm not menopausal, I was 29 at the time.

Incidentally, the endocrinologist said my TSH should be under 2. Thankfully he put this in a letter to my GP. Every time if have a GP review they try to reduce my thyroxine, and I have to ask them to read the scanned letter.