Fibromyalgia and thyroid B12 deficiency

Good morning , I've been diagnosed with fibromyalgia, hyper mobility and sacroiliac joint disorder. I primarily suffer with severe joint pain ( I use a walking stick or crutches) exhaustion headaches lIBS and more. I take a combination of tramadol paracetamol codeine and duloxitaine to function . My tongue has a scalloped edge , and has done for some time. I had a thyroid function test done 7/8 years ago and was told I was at the lower end of normal levels. Do you think it's worth using for more blood tests ?

8 Replies

  • Hi and Welcome ! Fibromyalgia is often discussed on this forum and many of us think it is connected to thyroid dysfunction - myself included. I was diagnosed 15 years ago by a Rheumatologist and Hashimotos was diagnosed in 2005. Once on optimal thyroid treatment the symptoms disappeared.

    So yes I would have some more tests done - but do ensure you have the full profile done - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg - the last two being thyroid anti-bodies.

    Also have tested - B12 - Ferritin - Folate - Iron - VitD. When you have all the results with ranges - post them here in a new post and people with answer with good advice.

    Is it possible for you to have the tests done privately ? So often Labs will not do the full range of tests if the TSH is in range. This is why so many people are missed for thyroid illness. Are you supplementing B12 ?

    The website of Thyroid UK - above - will also give you all the information you require - including some information on Fibromyalgia.

    You were probably Hypothyroid all those years ago. You could try asking for those test results and let us know what they were - could be interesting. You are entitled to your results as a legal right.

    Hope you soon feel stronger - it can be a battle :-) Oh I am not a medical bod - take a look at my edited Profile by clicking onto my name and have a read :-)

  • Thank you, I will make an appt on Monday and request the tests and pay privately if needed, I also struggle with my weight too. I gain very easily and find it hard to lose it.

    I'm pretty clued up on fibro , but am increasingly fed up with the level of pain and exhaustion I suffer from

  • Pain can be due to Low B12 - Low D3 - Low T3 - Low Cortisol and so on..... Also the toxicity of several pain killers can be challenging.

    The above link takes you to over 2000 posts on this Thyroid Forum where Fibro has been discussed. You may find some new information.

  • Welcome to our forum MrsBear0512

    I would certainly follow Marz's advice re all of the blood tests. Many GPs or labs only do a TSH and maybe T4 but they don't tell us the whole picture. If your GP wont do the tests recommended by Marz I would suggest getting a private blood test and I'll give a link below from our main Website:-

    I will also give you a link to an archived site. Dr Lowe died of an accident but he was Director of the Fibromyalgia Research Foundation as well as Director of and Thyroidscience.

    The unfortunate fact is that you have suffered for years because before the blood tests were introduced doctors knew all of the clinical symptoms of a dysfunctioning thyroid gland and we were prescribed natural dessicated thyrod hormones, even on a trial basis.

    Since the blood tests were promoted as the 'perfect' test for diagnosing hypothyroidism the diagnostic skills were lost and 'new names' were introduced. Unfortunately because the emphasis is only upon the TSH it is that which determines whether or not we have hypothyroidism/hyperthyroidism and if our TSH doesn't rise we remain undiagnosed or given another 'diagnosis'.

    This is an excerpt from a Virologist (deceased) who tried to get the Endocrinology Dept to see some sense when diagnosing a patient but they wouldn't listen. (After all he was a Virologist and not an Endocrinologist).

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • scalloped edge tongue is normally indicative of Pernicous Aneamia

    Insist on full tests for this inc Intrinsic factor being done

  • Hi Mrsbear - I'm another person who was diagnosed with fibro (and ME/CFS before that) but felt sure there was something else going on - especially when I started to get other strange symptoms such as dry/chapped skin and hair loss. This forum has been a great help in making me realise that my thyroid and adrenals are probably at fault here.

    Marz and Shaws have given you great advice. But I would add, don't be at all surprised if your doctor won't do the tests you've been recommended. Mine wouldn't so I had to have them all done privately (on the main ThyroidUK website there's information about a place called Blue Horizons where you can get these tests done). Because my doctor wouldn't help, I did everything myself and I'm now taking supplements and feeling quite a bit better. My own feeling is that the fibro diagnosis is a bit of a "cop-out" for doctors. Once they diagnose you with that, they won't look at anything else (that's been my experience anyway :-( )

  • Caroline, at the time of diagnosis I was really happy to put a name to all of my symptoms, but as time goes by and I am getting worse and feeling like my life has changed beyond all expectations, I can't help but feel there is something else wrong. My tongue has been like this on and off for years, previous tests have suggested I'm on the low end of normal ( that's what I was told) ive read many articles saying that the basic tests are not a good guide and unless you are central to the normal ranges more detailed tests should be done.

    Really fed up, is Pernicious anaemia a B12 deficiency ?

  • MrsBear0512, scalloped tongue can be a sign of hypothyroidism or B12 deficiency. If you are B12 deficient your GP should do gastric parietal cell and intrinsic factor testing to rule out Pernicious Anaemia which is an autoimmune condition that causes B12 deficiency. B12 deficiency can be present without having PA.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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