Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Thyroid issues and GPs

253 replies

jarofpickles · 09/02/2015 08:23

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.

OP posts:
RockinD · 11/02/2015 19:26

Amen Lorraine

Iloveaverycosheshubbahubba · 11/02/2015 21:07

Lorraine fibro is definitely not a bullshit diagnosis whatsoever and for you to say so is just plain wrong. There is research on fibro going on. It's like the disease I have psa. Not a lot known about it until recently and now it's standing in its own right! You need to read more up to date medical literature.

lorrainecleaver · 11/02/2015 21:24

Thanks RockinD Smile Seems folk are wedded to their belief systems that doctor knows best and we're just flukes who got well on wishful thinking.

Iloveaverycosheshubbahubba that's really premature of you to advice me on what to read, considering you have no idea what journals I subscribe to.

I also know all about your little known disease PSA, unless the PSA you refer to is vine fruit disease! www.biosecurity.govt.nz/pests/kiwifruit-vine-disease

And interestingly enough, it's an auto immune disease linked heavily to hypothyroidism. www.ncbi.nlm.nih.gov/pubmed/17014017

EdSheeran · 11/02/2015 21:35

lorraine so now rheumatologists are wrong, too?! Posts like yours are exactly what I'm talking about. You give those who genuinely give a shit a bad name. You think you know better than everyone else. My thyroid is fine but I still have fibromyalgia.

Iloveaverycosheshubbahubba · 11/02/2015 21:43

I am actually very well read on current conclusive and subjective nedical literature. Some of the theories are downright harmful. I am under an eminent rheumatology dept that are top of their game and are knowledgeable about all interconnecting AI duseases. So agree with Edsheeran it's not helpful to theorise about matters regarding fibro.

lorrainecleaver · 11/02/2015 21:46

Oh please EdSheeran, enough with the dramatics. I never referred to your thyroid and to say I think I know better than anyone else just confirms to me you are wedded to your diagnosis. Absolutely no skin off my nose. You keep pacing and taking your meds, matters not to me. But you are on a thread about thyroid, so if I want to discuss what I have learned and how I recovered, I damn well will. It's most definitely not to ram it down anyone's throats.

Of course, when I had the erroneous Fibromyalgia diagnosis, wrongly given by a Rheumatologist, I was adivsed to avoid intenet sites and to pace myself, keep taking the Tramadol and Amitriptyline and there's a good girl. Thank god I had more gumption.

lorrainecleaver · 11/02/2015 21:49

Good for you Iloveaverycosheshubbahubba, glad you are well read but what theories are downright harmful?

bringmejoy2015 · 11/02/2015 22:07

This reply has been deleted

Message withdrawn at poster's request.

bringmejoy2015 · 11/02/2015 22:11

This reply has been deleted

Message withdrawn at poster's request.

EdSheeran · 11/02/2015 22:18

Gosh lorraine you really don't like anyone having a different opinion to you, do you? I was posting about my experiencing of people pushing their agenda on me and belittling my experience. You just proved my point exactly, so thank you. Own goal there.

P.S. I don't take narcotics or any other medications for my Fibromyalgia. There is on going research into why FMS is so common in people with other autoimmune diseases (like myself).

lorrainecleaver · 11/02/2015 22:31

Well EdSheeran, if you were posting about other people pushing their agenda on you and belittling your experience, why highlight my name in your post? I don't know anything about you, I don't disbelieve you are ill and have all the Firbomyalgia symptoms. I also don't believe everyone with Fibromyalgia has underlying thyroid problems. It could be any amount of other disease/deficiencies but I'm not dismissing the real illness of the folk diagnosed.

I truly don't mind others having different opinions to me, not sure why me defending my opinion is so troubling to you though? You are after all on this thread about thyroid. Perhaps you really do have your suspicions. Talk of own goals just shows you as someone desperate to score a point.

And you know, when people talk about ongoing research, I hope they keep in mind that much of the research is funded, out of neccesity, by pharma companies. It's not ideal but medicine can't afford to do without it. However, the end result is that drugs which yield profits will always be pushed heavily. I don't place my faith in Evidence Based Medicine any longer, I wish I could. journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020124

EdSheeran · 11/02/2015 23:16

You said FM was a "bullshit diagnosis". I said that it is not. That was all I said before you got very uppity! I even added in my first post that it may be the wrong dx for some people but it is not "bullshit".

I am on here because I did explore thyroid issues, upon the advice of my GP. am sharing my experience which I am entitled to do.

lorrainecleaver · 11/02/2015 23:24

EdSheeran you really must stop thinking everything is all about you Smile I wrote this - "They took my thyroid and left me to rot with below range T3 and the bullshit Fibromyalgia diagnosis." I was talking about me, my situation, not yours. When a thyroid is gone, or knackered, Fibromyalgia is a bullshit diagnosis.

Having said that, I scrolled back and see you have an enlarged thyroid but the good Endocrinologist said your thyroid was fine. I find that hard to believe, I can well believe your TSH and T4 are normal but I struggle to believe you have a tickety boo thyroid. Still, each to thier own. I've not sought you out to convert you to the dark side. I merely came here to comment on the GP's post about how wonderful (or not) the treatment and diagnosis of thyroid disease is. When thyroid issues are confirmed it's never wise to believe that Fibromyalgia is the reason for the ongoing symptoms. I don't know why you find that hard to accept.

Niecsey · 11/02/2015 23:29

Talking bout fibromyalgia....... I seen a rheumy who turned round and said to me him and HIs nurse before I went in had looked at notes and said oh not another one!!! And that he didn't believe in fibromyalgia! I was mortified ! This was a few years back! Ive also come across medical staff soon as they hear the f word they loose interest! However years later I seen another rheumy who says l defo do not have fibro..... I paid for blood tests and what l had was an under treated thyroid and severe vitamin d deficiency!

lorrainecleaver · 11/02/2015 23:30

Oh, and Ed "Maybe try to think about how your words may make fibromyalgia sufferers feel!" I do think about how those words may impact people, and I hope to god it makes them question things instead of blindly accepting diagnosis with little hope of treatment or recovery. It really is a label for a set of symptoms, nothing more. The underlying disease process has not been verified by the big, clever doctors with authority.

cheljane2 · 12/02/2015 00:20

JarOfPickles I found your write up interesting, but only in a funny way, now I appreciate that you are a GP, and like the women you mentioned I had a T4 on the floor when diagnosed TSH not horrendous but still 52, and no I was not ill not in the slightest, it was found by accident and I ollapsed ended up in hospital being told I could have had heart attack, then they prescribed Levothyroxine, then my life got turned upside down, my hair fell out, I lost my eyebrows, I started dripping of sweat, had anxiety which turned into a full blown panic disorder,my once always laughing personality gone, my memory gone, and my nickname was data base and Maggie thatcher as I had a photo graphic memory,and I never needed more than 5 hours sleep all my life all 39 years.my skin began to itch, dermatitis,i could not stay awake at work, I could not function, then guess what? oh yes then came the "you have CFS/ME I said at th time you are talking rubbish, what would be the chances the week I start Levo I miraculously get CFS, you then say I you had questions you would speak with the Endocrinologist, I find this even funnier, I saw an Endo for 18mths, at every appointment he would say "hello what shall we try today" every up I medication was my idea, to add T3 was my idea, and at the end of 18mths he told me he was only allowed to see a patient for 18mths, I said you have not done anything for me, every change has been my suggestion,now this whole time I have been in range but y in range has been T4 10.4 (range 10.4-21) T3 3.4 (range 3.2-5.9) nowyou keep going on about your patients are not ill they are within range,common sense says that when they put this into place in 1973 (if my memory serves me well), there has to be a top and there has to be a bottom, they took an average fro people not diagnosed with hypothyroidism or hyper,but that does not mean they were all 100% well just because none had been diagnosed, but this is where the real common sense comes into it,
if for argument sake you tell me you are looking for a new car, nd I say there is a scale we work on for our cars, and this is it,
10, excellent in everything
9, slight problems with with speed, but runs well
8, costs a lot on petrol,is juddery,winder wipers are intermittent
7, breaks down regular,struggles to get up hills,leaks petrol

so as you can see on the above scale if you want a great car you will get one at range 10, if maybe you have not got much money you may plum for a 9, but only someone absolutely skint, and has no other choice would go for a 7, but the car sill works, any lower than a 7 would be a car that did not work at all.

now what you are saying is if you have a patient, say who is like me who is right at the bottom of both ranges, you would say I am well because I am within range.do you understand what I am saying. if I am at the bottom of the rang I do have symptoms because my thyroid is working but not well.

The TSH test is not a satisfactory test, and before you say I have got it wrong, I have read an incorrect website, no I have not I have actually met the gentleman and I have read some of his thesis and reports, who came up with the TSH test, (he did work with another guy if I remember) the test is not used as it was intended there have been many irregularities with the consistencies of these, tests and the different variations and procedures with blood used at different facilities, they do not all do the same, they do not all treat the blood correctly as the test was intended,

and you may say you do everything possible, my GP is very honest and tells me that he is a GP not a specialist and as such there are many areas he would not know, and don't take this the wrong way, you study very hard to be a doctor and you normally specialise in one area, and as such you know a little bit about everything but not a lot about most things,as my GP once analogised it, "we are the checkout worker of a super market, he said we know everything we sell, but don't know much about all the items in the aisle. s we sell o much stuff, that's why you pen a bookfor an answer, that's why the tests you send off tell you if in range or not, that's why you enter patients symptoms to get an answer for possible medications.

cheljane2 · 12/02/2015 00:24

apologies for any words with letters missed out I have keyboard button problems, and if I don't read as I go I don't notice, the letters have not worked.

ifitsnotanarse · 12/02/2015 00:37

My GP reduced my levo due to the lab's report saying my TSH was too low. Even though the GP knew I was trying to conceive. I quickly became symptomatic again, with heart palpitations, fatigue, coldness, anxiety etc. and went back to the GP. Without testing my TSH and FT4, he sent decided that I was suffering from anxiety, prescribed me Betablockers, and sent me off for CBT.

To cut a long story short, I was left like this for 9 months, despite a routine blood test during this showing that I was clearly hypo again - but the GP and another consultant missed this. It was only when I miraculously became pregnant that it was noticed and my levo increased, but only to my previous dose. I asked for it to be increased again, as I was still getting palpitations etc, but was denied. Sadly I miscarried (yet again) at 10 weeks, two days after I saw the Endo (who also refused to increase my dosage).

I did see the head Endo at the Maternity Unit a week later, and was only then confirmed as having Hasimoto's. She listened to me and suggested that I need to keep my TSH below 2 but above 1. I am now on 125mcg 4 days a week and 100mgc the remaining 3, and have to say that the palpitations and anxiety have gone. Though I am still feeling fatigued, confused, in pain.

I now ask for a copy of all blood tests so that I know exactly what the results are. Previously I would have been told by the receptionist that all results were "normal" when clearly not.

I too was fobbed off with a Fibromyalgia diagnosis by a rheumatologist who was more interested in getting me out of his office than correctly diagnosing me. I waited six months for a five minute consultation and a handout. Not one blood test was ordered. Hmm

lorrainecleaver · 12/02/2015 00:43

I'm so sorry ifitsnotanarse Flowers It's this bloody attitude that thyroid disease is a simple to treat, on levo a day illness that results in doctors, nurses, Endos etc treating us as though they have it all sewn up and making such basic errors. Pregnany is known as a time of increased hormone need. I dread to think how many miscarriages occur through this.

The money wasted on CBT, Pain management, unneccessary scans, drugs etc must be astronomical, not to mention lives wasted. I almost left my son an orphan I was so utterly dead on a paltry 100mcg of Levo. The so called normal labs included a below range T3 and a TSH of 3. It makes me very angry and I spend my now healthy life trying to effect change for others. To say I don't give a shit could not be more wrong.

oldmotherhubbard2 · 12/02/2015 01:33

Well you do seem to have got yourself into a pickle. I do admire your brave (but myopic) attempt 'tho and sincerely hope you're learning a bit from this informative post.

There's a lot of us Thyroid sufferers about, especially Mummys - way more than diagnosed, and we tend to know more (and do more) than we care/dare to let on - it's called survival - better than 16% suicides 'tho eh? welcome to reality!

Of course it's not all about Thyroid disease, on forum we discuss causes - (heredity, environment and triggers) you guys never investigate causes - no time - barely treat signs/symptoms in favour of blood tests. Deficiency is a big cause - years of illness=years of recovery (years of precious life wasted) e.g. Vit D /B12 /folate /ferritin + (we are in stuck in permanent winter).

You could call us just old-fashioned cretins and stupid - but that's not PC - just making a point it is an old well-established condition, hence difficulty expressing ourselves sometimes.... we are forgotten in favour of new diseases (named & pill patented).

Depression/insomnia/spasms - have ADs - no it is not in my head.
CFS -co-incidentally after a partial thyroid op my GP said "it's not a bad diagnosis to have" ? I refused a CFS diagnosis - no evidence or even treatment.
Vit D low & I sorted (test £25) - no longer need carpal+/neck surgery.
4 years after op diagnosed Hypothyroid on blood-tests (plus many years before) obvious signs and symptoms ignored even with half a thyroid.
www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

Declaration - Unfortunately GPs are pharma-paid & trained to perform to funding targets QOF (e.g.1 point for Thyroid, 16 for depression) & mine couldn't even recognise a case of mumps! I would be sacked from my job. (yes I am able to work as self-treating like many).

oldmotherhubbard2 · 12/02/2015 01:54

above post in response to OP, GP 'jar of pickles'.

Vit D info - (optional reading)

  • needed for successful pregnancy & breast milk production
  • infantile jaundice cure- light therapy (vit D)
  • slow walking (bum shuffling) prevention of rickets (test shin pain)
  • osteomalacia/osteoporosis (adults)
& 'SAD' - depression - Sunshine is Free (if you can find it).

GPs have been told - still most raise eyebrows!
www.gov.uk/government/publications/vitamin-d-advice-on-supplements-for-at-risk-groups
meaning of life here (1½ hours well spent)
www.thefatemperor.com/blog/2014/12/11/the-vitamin-d-25ohd-seminar-video-is-released-if-you-care-please-share?fb_action_ids=10153430812679325&fb_action_types=og.likes

I'm done.

lorrainecleaver · 12/02/2015 15:47

This is how medicine practices Endocrinology. A monkey could look at lab tests.

Thyroid issues and GPs
ITrulyMoustache · 12/02/2015 16:13

Got to see other Dr today. Didn't go well. I ended up pulling out the NICE guidelines and saying sorry, but until you've followed these I don't honestly feel you can rule out my thyroid as a problem.

The following conversation ensued:
-but your TSH is fine so you can't have a problem, and TSH is the standard test
-my TSH was high before
-it was only slightly high, nothing really at all, not worth worrying about that
-look, either TSH is a good measure or it isn't, you can't really have it both ways Shock

Eventually I got them to agree to test my antibodies, though she didn't see why she should when my TSH levels were fine. Despite the fact they weren't fine before (except its open to interpretation when they need it to be Hmm). I'm hoping these show something up.

Clearly she wasn't interested in helping me. Its clear that even if the antibodies show up they're not interested in doing anything further other than monitoring. And if they don't show up she pretty much has said there's nothing wrong with me. To say I'm angry doesn't cut it. However its highlighted that I may need to look into other ways of helping myself, and probably find a new surgery again. But I have no clue how to help myself, and as the GPs are denying I'm actually having any problems then there's no advice from them. Is there anything I can do?

lorrainecleaver · 12/02/2015 16:35

ITrulyMoustache how high was your TSH previously, and when it was slightly high, did they test Free T4?

What are your main symptoms?

awaynboilyurheid · 12/02/2015 17:05

Ha ha ha that cartoon is soooo true !! it should add the Endo saying so all your symptoms must be due to something else!

Swipe left for the next trending thread