Getting a diagnosis - part 2!

Hi (sorry, long post!),

I posted earlier in the week about my symptoms and previous blood test results. I went to see my GP on Wednesday and she suggested I have Chronic Fatigue syndrome (CFS). I asked her what this was and she just said it used to be known as ME. I mentioned thyriod and she immediately dismissed ithe as my last test results were "normal". She suggested that I have a blood test and I went back on Thursday to have them done (not sure what tests she has asked for). She's also referred me to gastro as I've been having stomach problems, but suggested it was IBS.

Unhappy with the outcome of my appointment, I decided to pay to see a private GP. He looked at my previous blood test results, explained what they meant in detail and gave me an examination. He also dismissed thyriod as soon as I mentioned it as my results were normal. He gave me a prescription for some IBS medication to relieve my stomach symptoms and gave me the contact details of two private gastroenterologists if I wanted to make an appointment instead of waiting for my nhs referral. He actually suggested that I may have premature menopause due to all my symptoms (I'm 28) so no idea what to make of that! I'm now more confused than ever! :(

I've just ordered the finger prick test through Blue Horizon for thyroid to see if that will give me more answers.

Someone please tell me I'm not going mad!

10 Replies

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  • Sounds like par on the course.

  • Par on the course.

  • Before blood tests were introduced (in the 60's I believe) doctors knew clinical symptoms and we were given a trial of thyroid hormones (no levothyroxine then) and if we felt better we continued on them. If not we weren't hypo. As far as I know, when patients were prescribed natural dessicated thyroid hormones there was no ME, Fibro or CFS which were named about 10 years after the introduction of the blood tests and levothyroxine so I have read.

    thyroiduk.org.uk/tuk/diagno...

    It is unfortunate that today our TSH must reach in the UK - 10 - and in other countries it is 3+.

    thyroiduk.org.uk/tuk/about_...

    So, all of the people you have consulted with must agree you have symptoms but are giving you different diagnosis.

    The following was by a doctor who was hounded by the GMC for treating/diagnosing patients as he was taught and all other doctors before the levo and blood tests were introduced. As the older doctors resigned he was the only one who would treat the patient and not the test and he died of a stroke, so the last doctor (he wasn't an endocrinologist. Excerpt:

    This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

    This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.

    worldthyroidregister.com/Go...

  • Vwyrien,

    TSH 2.7 indicates your thyroid is beginning to struggle. NHS doesn't diagnose hypothyroidism until TSH is over range which is usually around 5 or 6.

    Serum Ferritin: 22.6 is very low. Ferritin is optimal half way through range and ideally will be >100. You can supplement iron with 1,000mcg vitamin C which aids absorption and minimise constipation.

    Vitamin B12: 158.2 is very low. If it is below range you have B12 deficiency and need B12 injections. GP should first investigate whether pernicious anaemia is causing B12 deficiency. healthunlocked.com/pasoc are the experts for PA and B12 deficiency.

    Your GP should check your folate level when prescribing B12 injections.

    CRP: 21 is an inflammatory marker. The stomach/IBS symptoms may be why CRP is elevated.

  • I just had a look through your previous posts and results. The trouble with all this is that some people do have absolutely no symptoms with a TSH of 2.7. They probably have adequate T3 in their system, but without testing your free T3 who is to know if you are one of them? But some are on the floor, and in my experience, once there are symptoms and a TSH over 2, there is some degree of thyroid disease. I myself was complaining by the time my TSH was 2.2, but had to wait three years to discover thyroid disease on the internet and insist on the right private referral.

    Doctors seem quite happy to leave us sicker and sicker, knowing that eventually, suprise, surprise, we will be Dx with hypothyroidism. Its a nasty, abusive system, that no longer really has anything to do with patient care!

    The BH test is the way to go.

  • Thanks for all your replies :)

    I'm going to find out how much the private gastroenterologists appointment is, but I'm imagining it's pretty expensive :-/

    When the private GP explained my test results he said some of them were low, but nothing to be concerned about! He said my ferritin level was normal and B12 wasn't low enough to cause concern!

    Hopefully the Blue Horizon tests give me some explanation of what's going on.

  • I wouldn't set too much store by a gastro appt. I had every test they could think of but was told that there was nothing wrong with me, so I just had to get on with it on my own. I was referred because of low ferritin and morning diarrhea (and, no, it wasn't bile acid apparently or SIBO or anything else).

  • IBS - is a syndromei there is no one cause. I was diagnosed with gut TB and then Crohns - all 44 years ago. Hashimotos in 2005.

    In my non- medical opinion gut health is affected by low thyroid. T3 - the ACTIVE hormone is needed in every cell of the body. The most receptors for T3 are in the brain - second in the gut/immune system 😊

    Gastros have not served me well 😴

  • Hi firstly you are not going mad, wait to see results from thyroid test, post on here and members will advise. Gp told me I was going into early menopause when I was 38, five years later was dx with Graves disease, I now know my symptoms were thyroid related.as for stomach if you have thyroid problems then very often you can have low stomach acid not high and symptoms are very similar so my advice to wait on results from thyroid before taking ppi.

  • I think you are wasting your money making appointments to see doctors privately, personally.

    Doctors aren't trained in nutrition. They will tell patients that anything is range is normal.

    To make up an example, imagine you have three patients, A, B and C who all have their ferritin measured. The reference range is (20 - 150).

    Patient A has a ferritin level of 20.

    Patient B has a ferritin level of 85 (i.e. mid-range)

    Patient C has a ferritin level of 150.

    All three patients would be told by doctors that their ferritin level was normal. But which one is likely to feel the best? It would probably be Patient B. Patient A is likely to feel the worst.

    Similar comments apply to thyroid hormone levels or TSH levels. Anything within range is "normal" and patients who insist they still have symptoms are likely to be classified as hypochondriacs or to suffer with health anxiety or, as in your case, the doctor wants to diagnose you with CFS or ME. This is a diagnosis that should be avoided at all costs! Once you have that on your medical notes you will find it hard to get treated for anything at all because all symptoms will be blamed on the CFS. And another point - doctors believe CFS is a psychological or psychiatric condition, it isn't "real" as far as they are concerned.

    So CFS/ME - avoid, avoid, avoid.

    -----------------------------------

    Another point - private doctors aren't necessarily "better" than NHS doctors. In fact most private doctors are also NHS doctors. All doctors, private or NHS, have to follow the same guidelines, although I accept that some private doctors may interpret those guidelines more in the patient's favour than a cash-strapped GP or hospital doctor would.

    ---------------------------------

    I was first diagnosed as "borderline hypothyroid" in the early 90s and was told I didn't need treatment. I was still being told I was suffering from subclinical hypothyroidism in 2013. I got a prescription (I had to really, really beg) for 25mcg Levo that year, but when I started researching thyroid problems I realised I would never be taken seriously and would still be left to suffer. So I've been treating myself ever since.

    Getting nutrient levels up to optimal will help you enormously. It's a good place to start.

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