Consultant physician (not endo specialist) diagnosed CFS without my agreement!

My diagnosis from the Consultant physician who said TSH test is THE MOST accurate test for thyroid (I'm scraping in just within normal range) .... she wrote to my GP saying her diagnosis is Chronic Fatique Syndrome!!!!!!!!!!!!!!! I am speechless. Imagine not listening to or thoroughly asking a patient who is trying to tell you their on going symptoms, thyroid history, family history. But deciding on CFS because you're tired and disregarding everything else. At best shocking, at worst dangerous.

I said to a new GP today that I wasn't accepting that diagnosis and from my history with hypo thyroid I know my symptoms and I'm worried because they're getting increasingly worse and I've finished antibiotics for yet another infection. Thankfully he listened to my symptoms and said he would write to endocrine, although I'm worried about where he's referred to (the nearest place) because I've not heard great things but at least it's a referral ??

29 Replies

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  • imho anyone who is prepared to diagnose CFS/ME should be taken out and summarily shot. But not until they've also been diagnosed and made to suffer said (fake) diseases. (A personal opinion you understand)

  • I know it is your personal opinion, I also know that CFS/ME and Fibromyalgia are used as dump categories when correct diagnoses are missed. What I want to say, as a long term sufferer of all 3 is that the term 'fake' can be misinterpreted as illnesses that sufferers 'fake'. Believe me they are real enough to those who experience them. they are overlapping syndromes that, as yet, are inadequately researched. They cannot all be explained away as un diagnosed thyroid disease.

  • These are absolutely real and dreadful things to live with and that must be awful for you, but I think what was meant was that it is a fake (wrong disease) diagnosis and with no further investigation as they put you into a box that isn't right for you but is easier for them. I know for my situation and thyroid history what I'm facing again and I'm aware things can overlap but I know this is endocrine related.

    It's not that CFS/ME and Fibromyalgia are fake, it's the fake and quick diagnosis, despite everything pointing so obviously to endocrine. So sorry to hear of your struggles.

  • Thank you for your comment, I know she didn't mean that sufferers are faking, I just think we need to be careful about language we use. I have had ME for 18 years and was extensively tested by my GP. The truth is that the vast majority of those with ME are not misdiagnosed. We simply do not know enough about this group of syndromes. It does sound as though the Dr above has diagnosed rather hastily but that isn't everyone's experience. I think many of these illnesses share common aetiology, the last thing any of us should do is misrepresent the experience of others suffering misunderstood illnesses. I appreciate your reply :)

  • Hello Marie. You're right. It was a poor choice of words. Believe me, I know how real this illness is - I've been ill for 37 years. ME is, in my opinion,, always something that needs diagnosing properly. Of the people I'm in touch with it has turned out to be - thyroid/adrenal, persistent bacterial infection that needed an operation and 2 months of drip antibiotics to remove, persistent tropical insect infections, auto-immune thyroid disease. The point is that it is always something - but doctors can't or won't do the testing required to find out what it is.

  • I mostly agree but many of my ME fellow sufferers and myself were tested for all those things and more but are still left with this diagnosis. Only a minority turn out to have those conditions. In my own case I had extensive testing for vector Bourne illnesses, thyroid and adrenal tests, I had 2 years of antibiotic therapy, countless blood tests, brain imaging, full body MRI, neurological testing to name but a few! I'm not sure ME always has 'a' cause, it could well be multifactorial. Thanks for your response though

  • Thank you rosetrees. I said I would not accept that diagnosis and that I did NOT have CFS, but who knows whether me saying anything will make a difference - it's only my body, my life and my lack of treatment!!!! And that was a Consultant Physician (general) at the Hospital.

  • well this is just appalling!!!!! I really sympathise. How can you be diagnosed with a symptom? Are you going to write to your GP so that it will be on your records?

    So you have been diagnosed hypothyroid previously? forgive me I don't know your story. Your TSH would hopefully be below 1 and your Free T4 at the top of the lab range?

    Have you had your B12, ferritin, folate, vitamin D, blood sugar tested? Sorry to hear that you are having infections. Anti-biotics can mess your body about, I have been told that it is a good idea to take pro-biotics a week or so after.

    I was like a terrier when I was battling with my GP, I just kept making appointments with all of the different GP's and writing letters.

  • I hadn't thought of writing to my GP, that's a good idea, thank you.

    I have history of being hypo and hyper in the past and 3 years ago was on thyroxine briefly for hypo. It's since been monitored for 3 years (though continued to have mild symptoms), with latest tsh bloods sitting at 0.64 and 0.7 - which would mean hyper but T4 and T3 on low end of normal too. This year however, following a second miscarriage I have had 5 infections since March and increasingly worse classic hypo symptoms, everything has been investigated with scopes and have come back clear but I'm left with symptoms just getting worse and worse and because TSH is within normal range they won't refer me to Endo, so I saw a new GP today (locum) and he listened to what I was saying. Also, he felt my mum's history of thyroid, my own history of thyroid and my mum dying of adrenal carcinoma was very relevant but the Consultant Physician didn't, she didn't think my long list of on going symptoms were relevant either and just took the tiredness off the long list and jumped on that, saying you've got Chronic Fatigue Syndrome. I live in a very very small community and I'm trying not to think that this is a reason for all this, as so many are experiencing similar in bigger communities.

    Blood sugar came back fine, not sure about ferritin or folate being tested and I can't remember what B12 was. That's a great idea about pro-biotics after antis. I take regular multi vits and iron, as iron was a bit low. Definitely my endocrine system not functioning properly, why does it all have to be so complicated and why aren't GPs more interested when it this is the "gearbox" to our whole body!?

    Did you change Drs or make progress with the same ones? Good for you for not giving up. :)

  • As we talked about before, your results could indicate a pituitary issue (Low TSH, Low T4/T3) and I think you should push to have this checked out.

  • I'm hoping they'll be thorough and test pituitary too, also adrenal symptoms and pain. It's all connected. I will do my best to push. Any specific pituitary tests that are the most accurate? Thanks Janericat

  • Oh my word, I feel for you. CFS or ME is usually diagnosed when thyroid is fine, yours is not. You poor thing having two miscarriages too, my heart goes out to you!!! infertility and miscarriages are classic symptoms of hypothyroidism. This is where the TSH just hinders the diagnosis. When having a baby it is V I T A L that you have a good storage of thyroxine and you haven't if your free t4 is at the bottom of the lab range. The baby uses up a lot of your supply. I have only recently learnt that this is why we are so tired when we are first pregnant.

    All I can say is that you need to write to your GP, maybe copying others at the surgery too insisting that you are referred to an Endocrinologist. You absolutely refute the cfs diagnosis.

    Whereabouts in the UK are you? There may just be a nice friendly understanding Endocrinologist that someone will know of and then you could ask to be referred specifically to that Endocrinologist.

    Relationships are pushed and friendships are lost with this disease, do ask your loved ones for help as you will not have the strength to fight sometimes.

    I haven't changed doctors because I simply don't know of one that would be better? I had a TSH of 7.9 and was told that I was fine. I had no doubt that I was hypothyroid as I had almost every symptom. My story is in three parts if you click on my name and see my blogs way back.

    I really sympathise with you.

    Sue

    thyroiduk.org

  • I have just briefly looked back at your previous posts and see that you are in Scotland. I wonder if it would be helpful to speak to the three scottish thyroid petition ladies. Wouldn't it be wonderful if Elaine Smith was your MP?! I know that Sandra and Lorraine do come on to this forum, maybe you could send one of them a private message? or speak to them on the Facebook page Scottish Thyroid Petition.

    If you haven't already, do write your brief condensed story with your name address and telephone number to Elaine Smith.

    scottish.parliament.uk/msps...

  • Hi Suze, I'm going to look in to this tomorrow and read your story then. Thank you so much for taking the time you have to share all this and pass so much helpful and hopeful information on. I can't believe how high your tests were and STILL they didn't do anything!! So dangerous.

  • My GP said it was CFS/ME after I had a partial Thyroidectomy, co-incidence? I refused the diagnosis - GP said well it's "not a bad diagnosis to have" - ?? but there's no treatment! (yet my TSH was over 5). As Suze says I think it's a symptom, or a collection of - very real - symptoms, but what is causing it/them?

    Good advice above - sadly we are not the only ones - a related poll... best wishes J x

    healthunlocked.com/thyroidu...

  • I had the old fibromyalgia diagnosis after partial thyroidectomy spareribs and accepted it blindly as I had no clue that 'the thyroid bloods are normal' could be anything but. Straight on to hard core painkillers and amitriptyline and years of worsening health. I hate to see others go down this wrong route.

  • I hate it too - hence keep hanging around repeating my story ad infinitum, in case it helps someone. Yes offered amitriptyline on numerous occasions, for pain, shakes, muscle spasms, 'depression', insomnia - each visit same 'cure' (one daughter for 'baby blues', the other to gain weight! I was disgruntled to say the least!) it does seem a wonder pill -perhaps I should have taken it! - however I have friends who've gone down that road and luckily very wary.

    Strangely I seem to have eased some painful symptoms after finding I was low in VitD (and avoided bilateral carpal & cubital tunnel surgery too, hmm..) but now my TSH is 1.6 so I'm 'normal & cured' - not! looking at B12 for the lead legs, numb hands stuff (doc won't entertain a test so bought one) then will try & get my head around low adrenal function (never could get up in the mornings, 3 o'clock crash - but I wake up about 6pm, after a really cold spell). Even if I was treated for my Thyroid I think I need to sort these first.

    Unfortunately my biggest problem is oomph - daily living means I have no energy left to fight, I am in awe that you can do that. I just avoid everything, especially stress. Hugs Jane x

  • Oh my word "not a bad diagnosis' just imagine if you had accepted it and how many people have!

  • I didn't understand what she was saying at the time (it was like you want an excuse? no I want to feel better) but just knew ME/CFS meant no help or hope for me, it was just darn obvious to me after a Thyroid op! and why now another 'disease' with the same symptoms? I suppose my mistrust began when they couldn't even recognise I had mumps! x [not detracting from those folks suffering with horrid CFS symptoms]

  • dimdims37 I agree with the others, don't accept that dustbin diagnosis. It could indeed be pituitary and they are supposed to check for that with low TSH and low T4/T3 both present. If you are in Glasgow I could tell you who to avoid, not so easy to tell you who to see but there are one or two names who are worth seeing I think.

  • Hi DD. I'm not familiar with the commonly used definition of 'chronic fatigue' in the UK, and am no expert on this stuff anyway - but it's very specifically attributed to the longer term effects of chronic stress (high cortisol leading eventually to low as the adrenals become exhausted) and the possibility of consequent primary and secondary hypothyroidism (it can lead to gut issues that compromise mineral absorbtion and kick of auto immune issues that lead to thyroid problems, as well it seems as cause reduced T3 production and/or cause more reverse T3) by at least one group of US naturopathic practitioners. e.g Clymer Health

    This may not be much help to you if in the local bureaucracy chronic fatigue is viewed as some sort of diagnostic catch all existing only in the patient's mind with no basis in reality - but based on the above there's nothing about a genuine diagnosis of CF (or indeed ME) that excludes a physical basis or related hypothyroidism.

    If its with ME being used as a catch all diagnosis to justify perceived 'tiredness' when hypothyroidism is deemed not to be present - because patients falling anywhere within the thyroid stock blood test ranges are deemed 'normal' - then surely the problem lies in the manner of use of the stock thyroid blood reference ranges?

    It's crystal clear that in the real world of patient experience that the reference ranges (when used as rigid bureaucratic criteria/in isolation ) are not a reliable means of diagnosis of hypothyroidsim. So many of us have experienced serious hypothyroidism while within the so called 'normal' blood reference ranges...

    There's a thread on the BTA guidelines on diagnosis of hypothyroidism here: healthunlocked.com/thyroidu...

    Pituitary issues and the like would complicate the picture, but my impression is that the guidelines are bureaucratically inspired, and anyway self contradictory on TSH. In that they recognise that the tuning of replacement to place the TSH value in the right part of the reference range may be required for the patient to feel well, but at the same time seem to suggest that hormone should not be prescribed to anybody falling anywhere within the blood reference ranges. (???)

    It seems likely that what you've run into is a bureaucratic nonsense - a result of the often yawning gap between patient reality/experience, and the locally applied bureaucratic (not factual) definitions of both hypothyroidism and chronic fatigue...

    ian

  • "latest tsh bloods sitting at 0.64 and 0.7 - which would mean hyper but T4 and T3 on low end of normal too. "

    Can I suggest that you look into secondary hypothyroidism, which is what these test results suggest to me, and then go and bang a table or two?

  • I came across that too but didn't fully understand secondary hypothyroidism, although someone here was really helpful and posted a link but I didn't fully understand, someone felt it could be pituitary and this makes sense too. My symptoms are all classically hypo so with the blood tests leading towards hyper it looks confusing. The GP practice has a different range from the one on Thyroid UK so it didn't look as low as I felt it was according to the latest range. I need to find information I can take along to the GP to argue my case. Thank you for your reply, it's helpful to hear you are thinking along the same lines

  • "HYPOPITUITARISM

    Diagnosis Secondary hypothyroidism should be considered in patients presenting with low FT4 and normal

    (or only slightly raised) TSH. However a low Free T4 in the presence of a normal TSH is most commonly

    due to non-thyroidal illness or the use of NSAIDs, furosemide, anti-convulsants or high dose glucocorticoids.

    If hypopituitarism is suspected, an endocrinologist should carry out further investigation and

    assess requirement for treatment

    Monitoring T4 therapy in hypopituitarism – Specialist Care

    TSH measurements are of no value in monitoring these patients. An Endocrinologist should guide

    treatment and follow-up.The aim of therapy is to maintain Free T4 in the upper third of the

    reference range (16-21 pmol/L)."

    From the guidelines for thyroid testing in primary care in Lothian

  • Thank you for taking the time to post this. With my tsh being just within normal and low end of T4 and T3, and long list of hypo symptoms it makes sense. Fingers crossed for when Endo appt comes through.

  • Might not be a bad idea to do some homework on this so you can raise the question, especially if you’re getting the all too frequent ‘your TSH is within range, you do not have a thyroid problem’ approach.

    I actually had an endo tell me that he did not need to use any professional judgment in interpreting blood test results. He said that the lab sent him the result and the reference range and if the result was within the reference range, then there was no problem.

    If you get one of those you will need to be ready with a counterattack!

    Feel free to PM if you think I can help any further.

  • The symptoms of ME/CFS/fibromyalgia etc are the same as for hypothyroid, so it is strange when people are diagnosed with both and yet the doctors do not see any connection.

    We all know how badly thyroid conditions are diagnosed and treated in the UK. There are lots of people in the UK who are in the "normal" range, but if they lived elsewhere would be diagnosed as hypothyroid and given treatment. There are also those who do not respond to T4 only and remain ill, others who are given a low dose because of blood tests, but who obviously need more medication. Then there are rare conditions such as thyroid hormone resistance which is not even tested for.

    If the above were properly diagnosed and treated there would be an awful lot less people with ME/CFS/fibromyalgia etc.

  • I feel your pain hun. I was diagnosed cfs too, by the endo as he said my bloods were within normal limits!! Gp agreed and after that, all pains were down to cfs.

    I only got diagnosed after changing gps!

    Good luck hun xx

    Ann xx

  • Hi Ann, thanks for your reply. Did you get treatment after changing gp? What a nightmare for you, being left without the right treatment. Did you go private or see another Endo after changing gp too?

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