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.

When I first joined Thyroid UK/HealthUnlocked, I thought half of the posters were seriously weird. I only joined so that I could learn a bit more about my Hashimoto's, that's all. Those that choose to self-medicate only do so because they are very unwell, and getting nowhere in the current system.

I lurked there for ages, just reading bits and pieces. People do not just spout their opinions, they link their comments to proper research. There was no harm in reading information, it didn't mean I had to "do" anything. You don't have to accept advice given, but there is no harm in being better informed about it all. It very slowly dawned on me that, if I was being treated adequately with medication, I shouldn't be feeling so ill. I have learned so much from my time there.

I have learned that I am legally entitled to have print-outs of all my test results - I have learned how to better understand my test results. I learned that "in range" does not mean you are well!

I have learned that I need vitamin and mineral supplements (having learned that some of my symptoms could be a problem with absorption - and yes, finally persuading my GP to test me proved that I was severely deficient no matter how well I ate).

I have learned that some of my dismissed symptoms could be attributed to other autoimmune diseases and, yes, I have other diagnosed diseases now (I had to beg for testing).

I have learned that maybe I had low stomach acid, not high stomach acid (which I had prescribed medication for), and have learned how to treat it without taking drugs.

I learned that a gluten-free diet might help - I had nothing to lose, so tried it (it helps).

My endocrinologist should have known all this? Shouldn't she? Well, apparently not. I accept that a GP may not know everything about specific illnesses, but it didn't stop mine from ignoring some pretty serious symptoms which now have health implications for me for the rest of my life and, by definition, will cost the NHS more money.

So, basically, just because you read something or are advised something does not mean you have to do it. I would be far too scared to "go it alone" without support from a doctor, I don't understand all the "science" stuff as well as I would like, but the route I have gone down is actually what I believe a decent GP and endocrinologist should have pushed me down already.

I posted earlier in this thread about how I'm currently suffering with hypothyroid symptoms (including hair loss, fatigue, feeling cold, feeling like I'm not on this planet etc) and infertility. Have just been to see my GP ahead of a consultant appointment for IVF which was to be started in the next few months.

My TSH came back at 10.6 and FT4 at the same in the pre IVF bloods. I have been worried sick all week, had started a thread on here, have joined a support group. Have a large family history of hypo and Hashimoto's...

Despite all this, the GP was stern. "Do you really want to be on lifelong medication" was her opening gambit, at which point I started crying. NO!! I don't! I explained I just want to feel well. IVF aside, I am a carer to my 8 year old DS who is suffering for my illness. His life depends on my health. If it wasn't for his dad he wouldn't even be making it to school with meds and a feed made up. I am DREADING half term because I know how much I'll struggle. My house is falling apart because I don't have the energy. My social life has gone, I didn't have much of one to start with. My friends tell me I'm 'just stressed'. I look different. I feel like an alien. I can't think straight, write, remember words or spell. It's an absolute nightmare so no, I don't want to be on lifelong medication but not do I want to be failing at my life as being a mother, wife and most importantly, carer. If medication will help me then I feel it needs further investigation.

I am a vulnerable member of society. Carers have a miserable existence. This is the icing on the cake. I was half expecting her to tell me I'm depressed and shoo me away. I don't think GPs understand.

My TSH was 3.94 and FT4 12.6 when I started my infertility journey, I was symptomatic- that's why they checked. I was also anaemic according to my results but was not told to start iron supplements, i did that with my own common sense. Should this not have flagged up as a problem when I was TTC at that point? NICE States a TSH under 2 for conception.

The GP has (with argument) agreed to do my bloods in two weeks time with an antibody check also and has added things like rheumatism/crop for my joint pain. But I had to fight my corner in a respectful way, all the while struggling to form a coherent sentence due to feeling so ill and out of it.

I'm exasperated.

if your tsh is 10 isnt it a clear cut decision to start on levo?

I'd have thought so sanfairy! But no, apparently a virus could have caused the jump so they HAVE to do another test before they even consider meds. Never mind the fact that I'm struggling to care for an 8 year old severely dos led child in the height of pneumonia season feeling like a 90year old. In fact, I know more energetic 90 year olds than me!

I have changed beyond comprehension in the past 6 months. Yet they were willing to leave me 6 more to retest before today

Sorry about the spelling errors. As I said, I'm not working properly.

I had a TSH of 18.0 but as my fT4 was just in range, albeit at the bottom, so the endo didn't want to start me on thyroxine, even though I had some awful symptoms including:- dizziness, vertigo, anxiety and panic attacks, a feeling like I was having cold water poured on my head, headaches, general feeling of flu, memory problems, feeling weird and detached, dark vision, weak neck etc etc. I had to beg for a trial of thyroxine.

I am fine now, although TSH had to go up to 60 and t3 and t4 drop out of range before they really believed it was my thyroid.

All of my symptoms resolved when I got onto the right dose of NDT (I had conversion problems, so needed some direct T3 too).

Dreadful examples of how the Thyroid Function Tests, based on a non systematic review of poor quality evidence, is keeping people ill.

I have a friend who was a senior BBC executive. Now housebound with a TSH of 7, can't get diagnosed. There are thousands in the same boat and it is a national disgrace. How any GP can come on here and start a thread saying it's all fine and lets look for other causes just confirms to me they are blinkered. Medicine long ago gave up any pretence of actually looking to heal causes of illness.

... having just read all the latest posts ... this is exactly why people look for answers elsewhere ...

pat1ence Stupid question I know, but your GP is aware that you're trying to conceive? If they are (and I'm pretty sure they are) then get an appt ASAP and go and wave the NICE guidelines in their face:

linky to the relevent passage of newly discovered subclinical hypothyroidism

Actually, given you aren't currently pregnant maybe you're not considered it until the retest. But take those with you when you go back, you may need to refer to them.

This is what really irritates me with GPs - and there's a lot that do this. The TSH test is gold standard, f your level is within normal range there can't be anything wrong with you. If its above normal range but below 10 then its, well its hardly a problem its not worth worrying about. When its just over 10, well its only just over 10 honestly what are you complaining about?

Either TSH is the gold standard and anything out of normal range, however minor is bad, or TSH is open to interpretation. And for gods or anyone else sake don't do patients the disservice of telling them they can't be experiencing what they're experiencing

ITruly the totally know. They have been in the know since the beginning. I seem to see a different GP every time. My lovely one has left, so have all the familiar ones. They used to ask me how I was for whatever reason I'd gone (as in-are you ok in your caring role. Do you need some support. I suppose I'm a high risk of depression that goes with the job) I always used to say yes because I was. Now I'm not, I'm telling them why and they're arguing with me. So what was the point in ever f***g asking me!?

I mentioned the NICE guidelines today on advice from here, clinched the deal I think. That and me breaking down which I hate to do. I just went into town to grab some valentines goodies for my DH, ran into someone I hadn't seen for years, was lovely to see them. I had absolutely no idea what to say, got flustered and made an excuse to run. This is how it's affecting me. When I'm amongst the general public I cant cope, I have nothing to say. My brain is struggling. I'm now back home wanting to put my head in my hands and cry. Can't tell you how down its making me feel. I want me and my life back!!!

When this thread first started I had every respect for GPs helping and trying to support patients. I now feel let down like the majority of this thread. I know I can't fall apart but I feel so close due to feeling so frustrated at feeling so ill. My life is wasting away in front of me and I can't do anything about it except wait until March for a blood test! If I had the energy I'd scream.

And I agree with everything you said about TSH. It's the gold standard when it suits. It's like changing the rules to fit. It's not fair.

Ok so my thyroid review results came back today. TSH 3.3 T4 16, so the GP is happy with that. I have raised liver enzymes though and they want to retest them in three months time. Antibodies weren't done as GP said "they are always high so no point" I assume he meant mine specifically not antibodies in general. Anyway, although I don't feel anywhere like as dire as when I was first put on thyroxine, or when my dose was upped from 25 to 50, I am more tired and apathetic than I was, I've put on a lot of weight quite suddenly, and I feel tired all the time and am huddled under a duvet to watch tv even though our house isn't cold. So where does that leave me then? I assume with a T4 of 16 the results are fine?

pat1ence sadly its not just TSH they do it with. I get it a lot with B12. You can't have an earlier jab because your level is over 200 so you must be fine. But its 201 I cry (and in my befuddledness try desperately to work out if 201 is really higher than 200). Nope over 200 you're fine. And the converse, well its only 198, hardly worth worrying about but I suppose if you insist...

SirVix so you are on 50 mcg and tsh has come down from over 5 or over 10? and you have high antibodies
50 is a v v tiny dose
if you have symptoms you are not better

your options could be

1. take in a copy of 'understanding your thryoid' and say you want to increase to 75 or 100

1. just increase anyway (get an extra prescription) and then go in and say you feel better (if you do of course)

1. do nothing. you will continue to feel the same

1. ask gp to investigate other causes

i did 2 as i was quite happy after reading up to have a higher dose than 50.
i am now on 100.
from 50 to 75 my tsh went to 2.2
at 100 it is just under 1

of course hopefully the gp on the tbread can advise too

SirVixofVixHall on thyroid meds the doctor should be aiming for a TSH roundabout 1 and a Free T4 in the top third of the reference range. If he doesn't know that, he's an idiot or should be referring you to someone who does know. No wonder you feel terrible. The liver enzymes and cholesterol will rise the longer you remain hypothyroid in the cells. If you are on a good dose of Levothyroxine, it could be you are not converting it over and it's building up in your system making you toxic. Have they checked you aren't deficient in iron, Vit D, B12 or folate?

I wonder if anyone on here would care to sign this petition for Thyroid UK asking for further research into alternatives to Levothyroxine? Only needs another few hundred signatures to guarantee a response from the Government. epetitions.direct.gov.uk/petitions/64191

50mcg! That's a starting dose. Staying on it too long will give you worse hypothyroid symptoms.

Worth mentioning another thing many doctors seem unaware of - Proton Pump Inhibitors like Lanzoprazole, Omeprazole etc can affect the uptake of thyroid meds. They can also reduce the stomach acid so much that b12 and magnesium deficiency occurs. Patients are supposed to be on them three months max unless it's long term for haitus hernia, yet many thyroid patients are left on these for years, decades even. We commonly have low stomach acid which gives reflux and doctors, without testing, decide we have high acid and prescribe these.

www.ncbi.nlm.nih.gov/pubmed/17669709
www.ncbi.nlm.nih.gov/pmc/articles/PMC3782221/
www.pulsetoday.co.uk/20005335.article#.VN4gtfnkdcQ

"Serious question - how do you filter out information online? With the greatest of respect, while some of you are obviously very informed about thyroid issues, how do you filter the woo from the wacky? That's what makes me nervous about seeking advice online."

Not so difficult really, perhaps it is best to first have a look around and see which forum(s) you feel most comfortable with. You will soon know which you need "..to filter the woo from the wacky"

There is Thyroid Patient Advocacy and Health Unlocked run by Thyroid UK in the UK as the two top posting support forums and who both have qualified medical advisers that keep an open mind, and who do not necessarily follow mainstream medicine, especially when it comes to the diagnosis and treatment of those suffering hypothyroid symptoms. There is, of course also the British Thyroid Foundation website, but they do not have an online support forum, but their qualified medical advisers are from their big brother group The British Thyroid Association, who do not keep an open mind unfortunately and who come down on those who go against mainstream medicine. I know of many members who have left BTF to come to TPA and/or Health Unlocked and found support they desperately needed that they did not get elsewhere.

Also, do not be afraid of going online, even though your doctor might have told you that you shouldn't do that. This so annoys me because this is exactly where doctors should be going in an attempt to keep their medical knowledge up to date - a requirement by the General Medical Council. All the top medical journals are published online, and this is where we recommend our members to go. If your doctor does not seek the latest research and studies online, you may need to ask yourself whether s/he is the doctor for you and whether they have your best interests at heart?

Ask as many questions you feel is necessary. There are some wonderfully knowledgeable people on these forums, but never, never, never accept anything anybody says off the top of their head, especially if they are not medically qualified, which most members of such forums are not. Always ask them to provide evidence by way of citing references (preferably peer reviewed) to articles that back up what they say and/or claim. That way, you shouldn't go far wrong, but like anything else, plain common sense will no doubt tell you what's right and what's wrong. Have a bit of faith in your gut instinct.

Thyroid Patient Advocacy is holding their annual Conference on Friday 24 April 2015 at The Crown Hotel in Harrogate, North Yorkshire where you could learn a lot and meet fellow thyroidians. You can find more detail here tpauk.com/forum/content.php?1554-TPA-Conference-Friday-24-April-2015-Crown-Hotel-Harrogate . There will be an hour long open question and answer session as well as speeches given by doctors and I can assure you, feedback from others on past conferences shows it is a thoroughly enjoyable and educational and experience. Yea - I know, this is free advertising, but as this might be of real help and interest to some of you being left to suffer, it will hopefully be welcomed by some of you.

One of the Doctors speaking at the Conference is Dr Joseph Chandy, an internationally-acclaimed doctor who was banned by the GMC from prescribing vitamins - despite winning many awards for his work. In 2012 Dr Chandy was awarded the Glory of India award for research using vitamin B12 to treat fatigue syndrome. It appears that now, more and more doctors are terrified to give B12 injections to their patients, knowing they too could run the risk of being arraigned before the GMC, but Dr Chandy is slowly, slowly winning through. Thank heavens for these brave, brave individuals who are prepared to put their head on the parapet for the sake of their patients and fight for what they know to be right.

it helps to look at guidelines for your condition as well. i always do this. there are nice guidelines, sites like gp notebook. also the 'understanding ...' bma books are good and cheap or in libraries
this is gp notebook on hypothyroidism
www.gpnotebook.co.uk/simplepage.cfm?ID=261750793
you might not agree with it all but it can be a useful starting point for what your gp should be doing

Can I ask those knowledgeable please a question? If your thyroid has been checked and is in range and by 'in range', I don't mean bordering on low or high, then how do you know it's your thyroid, what other tests need to be done? I am now getting worried.

Ed, maybe thats what the op meant, sometimes its not your thyroid. the symptoms are really similar to other conditions too.

Is the Op still around? Have the responses to her OP helped her change her attitudes/consider changes to future practice?

what tests have you already had, Ed? (sorry i realise i now sound like the other person on the other forum )

No, that's ok. I'm sorry, I was being over sensitive the other night. I've had TSH, free t4, thryoid antibodies and t3. Not sure if there was anything else. I have an enlarged thyroid gland but no specific nodules on there.