Am I going crazy?!

Hi I am new to this forum, I've found out of complete desperation. I stumbled across the hypothyroid checklist when looking for causes of a feeling of something stuck in my throat (which I've noticed increasingly the last few weeks) my history though is long, with me actually checking almost every box in every area of symptoms, excessive fatigue, muscle aches, odd buzzing sensation, blurred vision, breathless on slight exertion and the list goes on, these were all over the last 4 years or so. To which my current diagnosis is CFS, as all my tests have shown within the "normal" ranges. Apart from the lump in the throat (don't continue reading if you're squeamish) since May I have also developed ongoing menstural issues, with prolonged and heavy bleeding, which has worsened after an operation to find the cause. Also during that time over the period of a month I gained over a stone in weight with no considerable change to diet or exercise. I feel at the end of my patients and constant visits to my gp prove ineffective as they are not willing to even consider a thyroid issue due to "normal" results. I'm sure it's not normal to feel so unwell on a daily basis with no reason or explanation 😔. Has anyone experienced similar? Where do I go, what do I do from here? Feeling helpless. Thank you for reading xx

17 Replies

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  • You are almost certainly hypothyroid. Unfortunately, assuming you live in the UK, the guidelines for treatment here are sadistic, and leave people suffering for (sometimes) years.

    The first thing you need to do is get hold of copies of the results for all blood tests you have had over the last few years. The results must give actual numbers (not just say "normal"), and must include the reference ranges.

    If your surgery allows patients to see their medical notes online, you would need to ask for a username and password to allow you access. You may find what you want to know that way.

    Alternatively, you are legally entitled to see and get copies of your test results anyway. You may have to pay a small charge - perhaps £1 or £2 - or you might be lucky and it will be free. If they say it will cost you £10, then take them at their word and say (politely) you would like a copy of all your electronically held medical notes for that price. See the link below for prices they are allowed to charge.

    nhs.uk/chq/Pages/2635.aspx

    Once you have those results let us know which ones you've got and we'll tell you which ones are relevant to your thyroid and your nutrients.

    By the way, it is a good idea to be polite and friendly with the surgery when asking for copies of records. Don't phone or go to the surgery when they are likely to be very busy. Be aware that receptionists cannot access or print out records without the permission of a doctor, so you may have to make a request one day, and go back for the results in a day or two.

  • P.S. No, you are not going crazy!

  • Thank you so much for getting back to me 😊 I'm due for another test, and I will get copies of my others. Yes I am UK 😔. It just feels like banging head against a brick wall! Something I read somewhere is that they should stop treating test results and start treating symptoms 😂😂 one day maybe lol

  • They used to treat on the basis of symptoms before the thyroid blood tests were developed - maybe pre-1970s or thereabouts.

    Hypothyroidism is the only condition I can think of in which treatment has gone backwards. It used to be better in "the good old days".

  • Ooh, I don't know - treatment for B12 deficiency is in a similar one-size-fits all state.

    And has similar symptoms, actually - so Rockchick, when you get to see your results, see whether that was ever tested.

  • Many thanks Human bean for this, my surgery has just told me it will be £18 to be given the results of my latest blood tests - which they won't give me over the phone nor allow me to read off the computer screen even while they were right there on the page looking at it!

    Now I see from your link that I can have the whole lot for £10.

    Loins now a-girded .....

  • You are legally allowed to view your results and take your own notes for free!

    Edit: Looks like that has now been changed... They don't cover that particular scenario at all in the NHS link I gave.

  • Thanks again humanbean

  • You insist your gp checks ALL OF THESE and you get the results inc referrnce ranges

    Thyroid antibodies

    TSH

    Free t4

    Free t3

    Ferritin

    Folate

    B12

    Vit d3

    Cholesterol

    All are closely interelated and all must be tested .....TSH alone is not enough because you might easily have Central hypothyroid as oposed to Primary hypothyroid which is all most doctors know about

  • Thank you, I will definitely be back for another visit! Or I will get these done privately.

  • Rockchick - my story is very similar to yours. The advice you will get from this forum will save your sanity but you've probably gathered by now that most doctors are unhelpful at best and utterly obstructive at worst. You are not going mad - you can get private tests done if your GP refuses (mine did on the basis of cost). There are plenty of knowledgeable people on here who will help you interpret any test results you get.

    Chin up - you're in the right place now :)

  • Thank you so much, I am definitely considering private tests. As just so exhausted mentally (as well as physically lol) at waiting sometimes over an hour to see my very lovely but apathetic Dr (whom I think lost her marbles sometime after her last pregnancy)

    I go in and express that it's not right to constantly feel this way at the ripe old age of 39 😂😂 they look at me like I'm mad or better imagining it! I wish I was that good at acting, I'd definitely be getting paid. It's actually great to find people who understand the struggle. Xx

  • Nowadays I can't help thinking that my doctor did me a favour by being dismissive. At least it means I don't have to rely on him for dose increases, etc., and that my health is now in my own hands. Clouds = silver linings :)

  • If you need to get blood tests done privately see Thyroid UK website

    thyroiduk.org.uk/tuk/testin...

    bluehorizonmedicals.co.uk/

    "Thyroid plus ten" blood test at Blue Horizon will give you all except Vit D which you can get done here vitamindtest.org.uk

  • Thank you

  • This is an archived website and some of the links within may not work but there's a wealth of info which will be very helpful and give you knowledge about your condition. You do seem to have many hypo symptoms.

    I would start with 'female problems' which is about monthly cycle and fertility.

    web.archive.org/web/2010103...

    Get the earliest possible time for a blood test and fast (you can drink water). Our TSH is higher early and diminishes during the day and that's what the doctors use mainly for diagnosing. If/when you are on thyroid hormones allow 24 hours between dose and test and take them after test.

    Make sure the ranges are stated in the copies as labs differ. Post them for comments. Also have your vitamins/minerals checked as well as antibodies.

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

  • Thank you

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