Very confused

New on this forum but be glad of advice. Doc today diagnosed me with fibromyalgia but not convinced and wondered if anyone had anything like I hav had . Start of 2015 exhausted start of 2016 weight fluctuation all over place Diagnosed with b12 of 132 in July 2016 ,had all sorts of neuropathy and symptoms Was given 4 loading dose and told to come back in 3months

Had a bad fall in August and was very ill for about 2/1/5 weeks Right side of neck came up doc said nowt went back few days later back of neck felt like hit by a shovel Diognosed with cervical spondylosis and after collapse in bath in Dec had two ultrasounds on neck and MRI on head and neck

Hav always thought Hashimotos fitted my symptoms have gained 11/2 stone since beginning of 2016 Dr only tested TSH and it was at top of scale and although asked him to do T3 T4 he wouldn't

Now 6 months later problems with stomach gnawing after eating ,carpel tunnel syndrome, worst on right, hand have had like shocks in 3 fingers and thumb Both hands affected both knees inflamed Right leg numb Neck always painful Just don't think it fibromyalgia Gonna have to move docs cos lost all confidence HELP

16 Replies

  • Hi and welcome May61

    I have hashimotos and also a diagnosis of fibro too. Your symptoms sound like with low thyroid but can also sound like fibro. Did you get your TSH result and reference range? I know you said it was high? Did your doc refer you to rheumotologist for diagnosis of fibro? I was diagnosed by rheumi mainly based upon having my body prodded in various locations to see if it hurt! Some folk think that fibro is a garbage diagnosis and to be honest so do i even though i have been labelled as such...i think at the time i was grateful to have any label to explain the pain etc. Please dont think i'm dumbing down what you are going through, i just know from my own experience that if i increase my thyroid medication when appropriate to do so that the symptoms disappear...low thyroid, fibro etc. If you type in fibromyalgia in the search engine on this website you will find lots of information. Can you go to see another doctor or practice for a second opinion and another TSH test? If not and you can afford to you can get private blood tests...i think Geneva and another one are often mentioned on here... hopefully some other folk will be along to help you too...

  • That the problem He said this morning the nodules on my first two fingers is osteo and there is no test for fibro and it is his clinical opinion that that what it is I just don't think I have enuf pain for it to be fibro maybe that's to come I always understood it was really painful The very first TSH he did back in July was 2 points off the top level but cos it wasn't * he wouldn't do any more testing He never referred me to haematology last year and never mentioned rheumatologist Was Goin to send me away with tramadol But I said would try naproxen with lapipprazole to protect stomach again cos it did help neck How **** do I feel and don't know what to do now "IBS" got worse since Xmas can no longer eat bread or full fat milk products He hasn't got to bottom of this

  • Oh dear! I think if it were me i would off to another GP/Practice. Prescribing tramadol sounds pretty extreme. It also sounds like they dont like spending the money on referring you to specialists who can help you. Seems to me you need to see the rheumotologist and the gastro person or at least some further blood tests to try and find out what is going on. I take Naproxen when my pain gets bad which it is at the moment. If i didnt have the hashimotos label i would blame it on the fibro which in my opinion is pre low thyroid! Others might have a pop at me with this opinion but it is my opinion based upon my personal experience. I really think you need to see another GP and possibly change practice otherwise you are going to remain unwell in my opinion.

  • hit the nail on the head with the spending money bit Yes have researched local docs and one practice near me has a doc who's interests are rheumatology Thanks

  • Fingers crossed May61 with the alternative GP.

  • Hi may61

  • Have you had b12 tested since the loading doses? Also have you had ferritin, vit d and folate tested? I think really you need a full thyroid panel and get your vit/mineral testing done. If gp won't do it you can get it done privately. I would also push for a scan on your neck, if gp refuses see if you can swap doctors. More investigation needs doing before accepting a fibromyalgia diagnosis i think x

  • May61,

    Ask your GP receptionist for your TSH result and post it in a new question for advice. TSH close to the top of range means your thyroid is failing and struggling but NHS won't usually make a diagnosis or prescribe Levothyroxine until TSH is over range. High TSH which means you have low thyroid levels can cause significant musculoskeletal pain which may be mistaken for fibromyalgia.

    Your GP isn't qualified to make a diagnosis of fibromyalgia. He should refer you rheumatology for a diagnosis. may be able to advise you.

    Your GP could test tissue tranglutaminase to check for gluten intolerance (coeliac disease). If coeliac is ruled out he should refer you to gastroenterology for investigation into your IBS symptoms.

  • ps May61,

    If TSH was high in range last July you should have another thyroid test within the next 3 months as it may have gone higher. Arrange an early morning blood test when TSH is highest and fast (water only) because TSH drops after eating and drinking.

  • I'm with NatChap - B12 deficiency is often not fixed by a few Vit B12 injections. Depending on the cause, you might need them every few weeks for life. Have you had any more injections since? How long ago did you last have one? Vitamin B12 deficiency - potentially pernicious anaemia - is a serious condition and would cause many of the symptoms you're describing. See pernicious-anaemia-society....

    and their forum here:

    Alas, thyroid problems often go along with B12 deficiency. You're absolutely right to query the fibromyalgia diagnosis, because that isn't a diagnosis. It's giving a set of symptoms a name because the doctor either doesn't know or can't be bothered to find out the real cause of your symptoms.

    One of the first things many of us learn here is that many many doctors know precious little about the effective treatment of both thyroid and B12 disorders. It comes as quite a shock, because many of us grew up believing that doctors knew best. Regrettably, though there are some brilliant doctors, there are a huge number of so-so ones... :(

  • have been on pernicious anaemia society since last year and i do think i need more b12 injections and have really fought for them but got just deteriorating my initial results from july 7 b12 132 review, TSH 3.56 review, Folate 8.1 review , sept 9 White cell count 3.64 review. MCHC 313 review ,

  • please do take a look at the PAS forum - link given by Jazzw above. Pernicious Anaemia is one potential cause of B12 deficiency - its an auto-immune disorder and is an absorption problem which particularly affects the ileum where most B12 is absorbed - but it also results in low stomach acidity - and the symptoms of low stomach acidity are almost indistinguishable from those of high stomach acidity.

    Please do post on that forum - there is a huge overlap with thyroid problems - it often occurs with thyroid problems and GPs generally have a very poor knowledge of how B12 deficiency works and there are significant problems with getting the correct treatment.

  • Hi may 61 ,I have suffered with fibro for 25 years, and haven't had any of those symptoms but everyone is different,there is lots of info on this Google it ,get your inflammation levels checked,and also your uric acid,should always have 3 blood tests for thyroid to get a true result.fibro is extremely painful and it affects the whole body , should be treated by a rhumatologist .I am in SA.KNOW things are different in UK BUT you must insist on your rights . rest is the best , hope this helps good luck

  • Are you still getting your B12 injections? If that is still low you will have lots of pain. I have all three, underactive thyroid, Pernicious Anaemia, and fibromyalgia. Once my B12 levels were boosted some of the fibromyalgia issues reduced.

  • Only 3 monthly which is never enough Doc won't give me any more

  • Have you tried adding in some sublingual supplements of B12? I used a spray under the tongue, until my GP was persuaded to increase my injections. I used it regularly for the last four weeks until my injection was due. I also used it at times when I needed extra energy or was feeling run down or unwell.

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