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.

I do have other health issues that explain my symptoms but my thyroid is still big and sometimes uncomfortable.

I think 50mcg seems too low, I was started on 25, (my TSH then was 22) felt a bit better, then my TSH rose from 2.5 up to 8 ish I think? Might have been slightly higher, so they upped the dose to 50, it dropped again a little bit and now seems to hover around 3.5. I had one liver test that was ok when I was first on thyroxine but for many years prior to that, and now again, I have raised enzymes. They didn't test my cholesterol but it has been pretty high in the past. I did ask for a vitamin D and B12 test a couple of years ago and the GP said they were fine, but I don't know the actual results. I also have reflux sometimes, I had no idea it was connected. I have seen 5 different GPs in the time I have been feeling as though my thyroid isn't working properly, and not one of them mentioned any connection with liver enzymes and thyroid function, I have instead been asked about alcohol intake etc.
Am not sure what to do now, feel wary of increasing without the ok of my GP, but I am wondering about in a bit of a fog most days, and I have really bad palpitations which I find pretty frightening.

SirVix you should definitely ask to trial an increase in meds. if you look at that gpnotebook link for instance, it says an average starting dose is 100 unless you are elderly or have heart problems. and it also says some people need their tsh below the mid point of normal.
you could try 50/75/50/75 if you are worried about side effects, then 75/75, then 75/100/75/100
Ed i'm sorry, i dont know about enlarged thyroids but hopefully someone else will know

I am 51, is that elderly? I hope not! was 47 or 48 when I started on thyroxine, I forget which. I had years of not feeling right, palpitations, dizzy spells, exhaustion, panic attacks etc, before that, but was always told my thyroid was fine. So something is obviously wrong in the diagnosis, as I clearly was not fine at all. I also had raised liver enzymes, high cholesterol, thinning hair, all sorts of other symtoms, so why do we still have this totally inadequate method of diagnosis?

lol no thats not elderly

Hi Ed it could be your thyroid is enlarged due to iron deficiency! Or even b12 deficiency can throw it off balance. If I were you, I'd want thyroid antibodies, Free T3, Free T4, full iron panel, B12 and possibly a fine needle aspiration. There is a comment on my Thyroid Petition Scotland Facebook page from a woman who had similar, was dismissed for years, had thyroid cancer. Not trying to freak you out, it's quite possible you are low in iron or something benign but it's best to do full tests.

Sorry Ed just saw your post that you've had antibodies tested. Do you know if they were negative?

I seriously would ask for B12 and a full iron panel if those are negative. From now on, ask for copies of all your blood results, you really won't regret it.

These links might help you to understand why you might be presenting with normal thyroid function test results, yet continue to suffer with many of the symptoms and signs of hypothyroidism. Hypothyroidism is defined as a deficiency in secretion of hormone by the thyroid gland, and in approx. 85% of such patients, they are given synthetic Thyroxine (L-T4) which then converts to the active hormone T3 that every cell in the body and brain requires to make them function. This conversion takes place through the liver, kidneys, brain and other thyroid hormone receptors throughout the body. However, some patients cannot convert thyroxine (not even their own) into this form of active hormone - between 9 and 13% (around 300,000 in the UK alone, so they need to be treated with Liothyronine (T3) and not with Levothyroxine. There are many reasons why conversion doesn't take place but doctors are not taught about these reasons - so they are leaving their poor patients continuing to suffer symptoms and giving them no treatment - 'cos their thyroid function tests show #normal'. This article might help you understand this better. tpauk.com/forum/content.php?1430-Low-T3-Syndrome-I-It’s-Not-About-the-Thyroid!

Your GP should check your TSH, free T4, free T3 and also test you to see if you have TPO (thyroid peroxidase) antibodies to your thyroid especially if there is anybody in your family with a thyroid or autoimmune disease.

tpauk.com/forum/content.php?1527-Advice-for-members-suffering-with-Symptoms-of-Hypothyroidism

campaigner77 EdSheeran has had those tests done already.

Yes, I know Lorraine. My comment was for other members who want to know what tests to ask their GP to do if they concerned they might have a problem.

Try 50mcgs with NO thyroid for 4 years!!!!

Having been hypo for 18 years (since I was 21), i kind of agree with the op. I don't think levels always correlate to symptoms.

From a young age I always felt the cold, had very thin hair, tired etc and just put it down to going to uni, working at weekends etc etc. it was only when I started suddenly getting pains in my neck that I was diagnosed as hypo. Neck pain was the only reason I went the gp.

Before then my symptoms were not really affecting me. My tsh was 22 at the time I was diagnosed but generally I felt very well.

I was started on 25mcs and I disagree that 25-50mcs must always be too low dose.

On 25mcs my tsh went from 22 to 1.5 and stayed that way for 8 years! It was after my first child that I upped to 50 and again I stayed that way for 5 years. I now take 75mcs and have done for 3 years and my tsh hovers around 2.5. I don't feel any different that I did when it was 22! I've had t3, t4 etc and all my results are fine.

I do think people are overestimating the percentage of those affected my conversion probs etc. whilst I agree with posters who have found this as their problem, it's not the norm and not that common when compared to the number of people who are hypo. The majority (as op said) probably have underlying issues if they are having symptoms once medicated.

For example I have thinning hair but equally so does mum and nan who are not hypo so my endocrinologist says it's likely genetic. I am tired but then I'm always anaemic. In fact it's iron tablets that make me better more than anything. When my tsh rose years ago from 1.2 to 2.5 I asked the doctor to increase my meds and he said no. He said my levels were all fine and it must be something else.

It turned out my ferretin was 10 - (range 12-300!!!). After 2 years of iron tablets i got my ferretin to 80 and I feel loads better. My hair is in the best condition it's ever been though still thinning. I'm also deficient in zinc, vit d etc so all likely causes of thyroid symptoms.

For those concerned about pregnancy, my tsh was always around 3 when pregnant and I was never tested during the pregnany or took more thyroxine, had no issues at all. Given most gps use the range 0.5-4.5 for tsh, literally thousands of women are having pregnancies at these levels as most GPS are happy with tsh in this range. Thus, even if 2 is optimal, most women are probably having normal pregnancies at higher levels than this - lots of threads on here make it sound scarier if levels are not under this magic 2 number.

Also my friend takes a lot of thyroxine and her tsh is 0.3 but she feels dreadful on a reduced dose, but quite simply, it's bad for her heart and I totally get why the doctor rules she must reduce. It's surely about weighing up the risks.

I don't doubt there lots of bad practice with treating thyroid but I don't believe this failure with tsh monitoring affects as many people as these threads suggest - failure of conversion etc seems to be suggested to everyone who doesn't feel better on tsh.

Loads of things cause thyroid symptoms.

Just to say that raised liver function test results are a typical symptom of hypothyroidism.

Well this weekend I've earned some I told you so stripes. Ended up in a&e under Dr instruction but thankfully nothing majorly wrong and I at least got a good workup and know my heart/liver/kidneys are all ok (well in normal range at least ). I have costochondritis and slightly high blood pressure (another measure that was just slightly over so nothing to worry about ). a&e Dr says its a result of virus or quite possibly autoimmune response (given B12 issues), but either way I know that when I was making a fuss I was ill with something. Sadly it gets me no further, but I know I'm not insane at least. It has at least convinced me to try going gluten free for a decent period to see if that helps as I reckon I've nothing left to lose. A bit worried about this slight high blood pressure though, mainly because I can feel the difference in myself and I've never had anything other than normal blood pressure (even when pregnant, suffering with SPD and having to work for the boss from hell!).

Ah, so it seems the blood test I demanded has shown I was having an episode of thyroiditis. Which according to the nice guidelines means tsh on its own is not a good measure of thyroid health. I knew it in my bones that there was something up. I don't know where it goes from here but I'm afraid I am going to have to be one of 'those' patients who demands tests. Because if I hadn't my Drs were going to totally write me off. If the op or other drs on this thread are still reading and wondering why some patients demand tests after reading the Internet then please take heed of my case. Sometimes all we want is to know what's wrong with us and we know in our bones we are ill, but we can't be because computer says no.

buttercupsand daisies, your post makes me feel sad

essentially, you have always felt cold and tired, with thinning hair, low ferritin and low vit d?

even when put on 25mcg you felt the same and still had low ferritin etc as well as other symptoms of hypo. you say you felt 'the same' but the same = cold, tired etc
perhaps you are just so used to hypo

had you been on an adequate level of levo, perhaps you would not have felt cold, tired, thinning hair. equally, as it goes hand in hand with low iron and low vit d, it is a shame those were not tested earlier and treated

there is no risk to your friend's heart from low or suppressed tsh btw. i am also that her gp wants to decrease her meds if it makes her feel ill

get well soon itruly

Jarofpickles. My Endo consultant said that they now know that people need a TSH f around 1 to feel well. He also said that they know approx 40% of patients don't feel well on T4 only. He said there was not enough money to fund research into T3 medications. The fact that it costs the NHS £120 month and T4 costs £1.20. Not the NHS fault if course but then no pharma company will pay to licence it when the docs never prescribe it. Vicious circle. I was told by my Endo that perhaps it was time to accept being a little overweight, tired and slow. Beautifully said by somebody who cleary has no idea the difference between tiredness and hypo tiredness. Anyway like many others, I am buying NDT myself on the internet. I have no intention of accepting a half life. I would like to be able to work with a medical professional with my medication but I have a suppressed TSH even thought T3 is bottom of range.... So I wont get an increase in meds to help me feel well. Like so many people we have to go it alone v

what a fascinating thread

in defence of GPs am really impressed with mine for dragging me in to see her the instant a routine check (am on lithium) revealed hyperthyroidism, she's consulted the relevant people, referred me for some radioactive scan or other and loaded me up with carbimazole and propranolol (after admiring my little goitre and elevated hr etc)

All I can say is, my TSH level needs to be as close to zero for me to feel well. I know that if I'm feeling wrung out that my test results will come back with a TSH reading of over 2/3.

I don't think GPs are to blame, they're only following NHS guidelines. It's the NHS guidelines that urgently need to be reviewed. I have given up on my GP now, because I know more about my condition than he does, and he's resentful. I order my Cytomel online, I know when I need to adjust the dose up or down by how I feel, and I use well informed message boards and sites like Thyroid UK and Stop the Thyroid Madness for advice and new information. This is advice I always pass on to people I meet with thyroid issues. So many people are left struggling on thyroxine, going back every 6/12 months to do their blood tests, fatter and more exhausted, but being told they are in range. It's appalling.

Just read the whole thread. It's interesting that a few of you were told that it was being a new mother that had caused your tiredness. I'm pretty sure that childbirth caused my hypothyroidism, maybe because of an autoimmune reaction during the major hormonal fluctuations during and after childbirth? But then GP's won't take you seriously, because you're a new Mum, you're supposed to be overweight and knackered! It took me seven years of feeling like crap before my doctor ran tests, and then my result was the 'Woah, how are you still standing?' kind, which I'm thankful for with hindsight, because if they'd tested me when it was borderline I may not have been prescribed medication at all.

No it's not that I'm used to being hypo. I am not hypo. My t4 is 22 and my t3 is also good so I am clearly not hypo regardless of my tsh being above 2.

My post was to suggest that my symptoms are not due to hypothyroidism but other conditions which are now being treated.

My mates heart will be affected I've heard. She actually has two endocrinologists in her family (inc one son!) who confirm she is putting her health at risk with such a tsh level and actually advised her to reduce the dose ASAP. Sometimes the benefits of the tsh are outweighed by maintaining healthy heart etc.

I feel much better now I'm on vit d and iron as they were obviously the cause of my symptoms not hypo :)

I genuinely don't get people's reliance on tsh. Tsh is the feedback mechanism for t4. It is not the active hormone. The active hormones are the important ones. Tsh is irrelevant (if in range that is) surely if your active hormones are fine?

I totally get the op when he says tsh doesn't cause symptoms ....it's the active hormones.

Of course I get that there are some people who gave say a tsh of 2 and say a t4 of 12 who need to up their dose but similarly plenty of people have a tsh above 2 which puts them in the optimal range for t3&t4.

I actually feel terrible on a higher dose despite tsh 2.7 as more thyroxine takes me above t4 ranges.

Even thyroid uk says you're only hypo above tsh 2 if t4 and t3 are low.

Thyroid symptoms are really vague .....I think some people would do better to consider all options than just thyroid.

My GP will not do anymore for me than run the TSH test, he refuses anything else and I can't afford to go private so I'm stuck. It's all I can go by. (I know your comment wasn't directed specifically at me, but I'm just saying.)

I'm actually going to change GP. I'm going to have to figure out how to approach a new GP with everything I would like tested without totally overwhelming them!

I agree that it's bad your gp only runs tsh test. Most at least do t4 even if they refuse t3.

However if you are medicating yourself (sorry don't know much about the stuff you are taking), surely that's dangerous given your active hormones are not being monitored at all?

Yes you may feel ok, but who knows what strain you are putting on yourself or what negative affects it could be happening. Like the op said, symptoms don't always correlate and whilst you feel well, without tests, how do you know metabolically, how you are doing?