Fibromyalgia diagnoses and discover myxoedema after 3 years. Anyone else gone from fibro to hypothyroid?

Fibromyalgia diagnoses and discover myxoedema after 3 years.  Anyone else gone from fibro to hypothyroid?

Hi, I am fairly new. I have commented occasionally but now I have positive diagnoses I feel I'm really here. My symptoms gradually gathered beginning with neck pain, upper back pain, then pain all over. A chiro tried pressure point test and informed my GP that I had fibro. He was only to pleased to confirm it without further ado, or referral. Prior to then, I had been in and out of the surgery, and A&E with a build up of bizarre symptoms. Chest pains, bran fog, anxiety, panic, depression, numbness and tingling, TMJ, wandering pain, burning pain, irritable bladder, sleep problems, eyes, hearing, air hungry, extreme fatigue which, on occasions, actually ground me to a halt and on-going balance issues...the list goes on and on. I researched & discovered that so many things carry similar symptom profile - you know the story. Latterly, with more pronounced hypo symptoms I asked for 'another' thyroid test. Behold, high TSH and low T3. initially I was elated followed quickly by anger that my doc just did not add up all the symptoms and check thyroid properly. Wondered if others began their story this way. Best wishes


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44 Replies

  • Is that you and your kitty? :-) Great photo.

    Ugh, sorry to hear you've been suffering for so long. There is said to be some relationship between fibro and hypo, though I'm not clear on the exact nature of it. It is a contentious issue and I don't want to get it wrong, so I will leave that for someone more knowledgeable.

    Keep an eye on your treatment. You really need to be on enough meds for long enough to give yourself a chance to feel better and often gps will keep you undertreated under the premise that 'within range' is good enough. Have they put you on levo?

    Do you have your blood test results? It's always good to have a printout so you know exactly what's going on. x

  • Hi PB...yes, levo, but I have taken myself off and trialling doc will have a fit when I finally have to reveal what I'm up to. I'll post test results tonight ..thank you x

  • Sorry you have had to wait so long for your diagnosis. I too had a late diagnosis after battling through several events ( see profile ) in my life. I was diagnosed with Fibromyalgia by a Rheumatologist some 14 years ago after blood tests had the GP saying I had Polymyalgic Rheumatica and wanted me on steroids.

    We moved to Crete in 2004 and Hashimotos was diagnosed late in 2005. Went to see GP with irregular heartbeat ! I had many symptoms of being Hypo but had blamed it on earlier illnesses....and just thought it was the pain that caused the fatigue. ( 4 hours sleep in the afternoon - I could get away with it here as a siesta :-) )

    PB is right it can upset some people when we say that low thyroid can be one of the causes of Fibro. As your tests have revealed a Low T3 it could be part of the explanation as its the ACTIVE hormone and needed in all the cells of the body.. You didn't mention anti-bodies - did you have them tested ? Hashimotos ? Many people rarely have the FT3 tested so are not able to make the connection with Thyroid and Fibro as the TSH and FT4 are in range.... Docs are happy to put people into a box - box ticked. Looking for the underlying cause is sometimes beyond them...

    I was on T4 in the beginning and there was some relief very quickly. I had back and hip surgery in 2007 and things began to improve. I saw Dr P in the UK after reading lots and again made improvements with his guidance. Over two years ago I joined this forum and learnt even more.... So have you had the other tests for Ferritin - Folate - Iron - B12 - VitD. They all need to be HIGH in range and I think you will find that VITD will make a big difference - in a big dose. Start low and slow :-) also B12 is SO important. I then moved onto T4/T3 and now I am T3 only plus endless supplements....

    I'm 9 years on from diagnosis - am teaching yoga three times a week - play a little tennis - swim loads and walk my dog....the back is constantly a niggle and of course every picture tells a story. I feel like a marquee that is held up by the guy ropes - if they should slacken then I'm sure I will fall down :-) So I just keep going !

    I am happy to answer any questions you may have ? I also wish you well soooooon....oh and it may be good to read the book - Healing is Possible - by Neil Nathan - it may help you with its abundance of helpful information and guidance.

  • Thank you Marz. Glad to read your story. Yes, all those tests on my wish list. I was taking some of the supplements mentioned but have weaned off...I don't know why really. initially felt dreadful after first two days on Levo, then went cold turkey for a week or so still feeling quite bad, and tried it again. Marvellous results within a day, energy right up but then started to feel rough again within a couple of weeks. Now I am trying NDT after reading so many negatives about T4 only.

  • Hi ya helbel, yesterday I felt ok until about four o"clock, I wore a different cami then I usually do. I have fibro cystic disease, but the different pressure of my bra/cami must have pressed on my body, and it is not very tight at all. Killed my ribs and under my arm, had to use deep heat! Really bad still feel rough this morning, does that sound like fibromyalgia??? I really think I have it, my mother does too. Does that happen to you? Sorry if I am off subject. But saw this and wondered if this is how you feel too.???

  • Hi Rita, so many things cause myofascial pain including thyroid probs. All my symptoms ticked the fibro/fatigue boxes...but if one looks hard enough, hypothyroid ticks all those boxes too. Check out this site and you could join her Facebook page : Its a big site to get though.

  • I also have thyroid troubles a goitre, am taking NDT, first month, it does really help. Thank you for the link. X x

  • Love the "you and kitty" piccy

  • 25 long years of suffering and damage from thyroid disease that doctors couldn't figure out. Many still tell me I have Fibro. I am hypothyroid after RAI and treatment protocols that don't work. I am in the States, so guess the problem with docs is everywhere. Is that you and your cat? Such a cute photo.

  • Dellie, the stories about lack of attention to signs and symptoms are appalling. For two years I kept thinking...'am I ?' Eventually, after networking with other artists (that's what I do...or think I do) I met other fibro sufferers relieved by thyroid hormone protocol. It's appalling to think we are left so long with the damage accumulating. I think the symptom build up and numerous miss diagnoses were the worst because I was treated like it was all in the mind and told to find ways to relax...pretty common experience. Good luck to you. Yes, my Fuzz :)

  • I know that there are some on here who get very defensive when anyone says that fibromyalgia is not a real illness. Of course, fibromyalgia is very real, very painful, and can destroy a person's life.

    What they are trying to say is that fibromyalgia is real, but it does absolutely nothing to get to the cause, because it is a descriptor rather than a diagnosis. To explain what I mean - You go to the doctor and say Doctor, I have an earache, what could be causing it? and the doctor looks in your ear and tells you it is Auricular Myalgia, all he has done is translate your symptom into Latin. He has not told you anything new. He has certainly not got to the root cause of the pain. In the same way, a diagnosis of Fibromyalgia is not getting to the cause of the pain. In fact, it is almost a dismissive diagnosis because having decided that this is 'it' they will look no further and mostly will just give painkillers.

    The late Dr John Lowe came to study the thyroid as a result of his work on Fibromyalgia. This link tells you something about it:

    You can see how very common it is that fibromyalgia sufferers have underlying undiagnosed thyroid deficiency.

    However, I would like to say that there are likely other causes of this widespread pain and also that I, personally, deplore the fact that doctors are happily giving a diagnosis of fibromyalgia and just handing over painkillers which actually make things worse in the long term. Pharmaceutical companies adore fibro patients, you can read the comment at the left side of the Fibromyalgia Page which I have linked above.

    Marie XX

  • They think they are getting somewhere towards understanding the cause now. You are right that it is very real. It seems that it is a condition in its own right but can have many triggers, one of which is hypothyroidism. Unfortunately simply treating the underlying thyroid problem doesn't automatically cure the fibro because the thyroid is only the trigger. Other triggers are trauma and illness. These can all cause a reduction in core body temperature which apparently then triggers the fibromyalgia. Raising the temperature again doesn't cure it. I will try and find the article.

    In some ways I am glad I have thyroid disease rather than fibromyalgia. At least there is effective treatment even if we do have to fight tooth and nail to get it!

    Carolyn x

  • Thanks Carolyn, look forward to that article if you mange to find sweat though. I will also Google key words.

  • Hi. I remembered I posted about it a while back here...

  • Cheers marram, I will read this, I feel about 147 today, only 59. X

  • Thanks Marie. Dr Lowe's book on metabolic rehab was my first. I could not afford the copy on fibromyalgia...about 240 quid at that time, but the book I have is enough. Yes, I totally understand about set of symptoms not the cause. Also, it took me ages to face a thyroid issue myself because I could not believe that in itself it cause so many symptoms. The mainstream assumption about hypothyroidism is fat and tired, and a pill is all you need!!! My peers now say how wonderful it is they have found something concrete and I'll soon be better...they haven't a clue, so, for my money, hypothyroidism almost comes under the silent illness category. Well, it does until they find it out via a lab. My doc was so relieved he could hang fibro on me...I was becoming a costly nuisance. I had all the detectable signs and symptoms but, as usual only the blood work is taken notice of.

    Thanks again xx

  • Why on earth did your GP accept the diagnosis of a chiropractor? He should have investigated to rule out anything else first.

    I'm glad you finally got the right diagnosis. Fibromyalgia is a different condition but with similar symptoms. Too many patients are fobbed of with a fibromyalgia diagnosis and told the only treatment is pain management whereas effective thyroid treatment could see the return of their health. I'm sorry you were put in that position. Although hypothyroidism can be a trigger for Fibromyalgia, there are many other causes and we should not assume that all cases of fibro are hypothyroidism (they are most definitely not!). But equally doctors should not assume that all patients presenting with fibro symptoms actually have it without proper testing first!

    I was already diagnosed with hypothyroidism but when I was switched from liothyronine to levothyroxine I started having a lot of symptoms. I had the usual fibro and CFS diagnoses flung at me until I became educated and discovered that I wasn't responding to levo. Since switching back to liothyronine, I feel relatively well again other than a recent flare up of joint inflammation and associated symptoms but it seems that may be rheumatoid arthritis instead and definitely not fibromyalgia!

    It seems almost ironic that many of us are fobbed off with a fibro diagnosis when those who actually have fibro are fighting tooth and nail to get such a diagnosis! It really defies belief and is so unfair for both thyroid sufferers and fibromyalgia suffers!

    Sorry for the waffle. Glad you finally got your diagnosis :)

    Carolyn x

  • Thanks again Carolyn. Yes, my story very similar. I don't know whether the Chiro's letter suddenly switched on a light or what. But he flatly refused to send me to a rheumatologist. By that point we had already lost our relationship and I was stressed to hell. I also read that GP's are DXing fibro now anyway as they can read the signs as well as any other, and only offer the same meds in the end. I had previously been referred to balance clinic and neuro for vertigo and imbalance investigation. Plus referred to a stroke consultant that told me I was having multiple TIA'S, and leaky heart valves from a jelly scan I never had. I lived under that diagnoses for three months until I instead he reassess my spine and neck pain. He finally changed diagnoses and signed me off with thoracic problems and Meniere's disease (inner ear). All too late by then as I was in the grip of fear and still no proper assessment for inner ear problems, which he was also wrong about. It was a terrible journey beginning with a spinning head one early morning. maybe the fibro came first out of physical and emotional trauma. I was working and worrying 24/7. Maybe, it was thyroid all along upset by too much abuse. I will know more after longer on meds.

  • All those symptoms you mentioned are significant of Vitamin B 12 deficiency it took me 27yrs now, ill for 6 mths to find a diligent holistic Gp to diagnose me.My B 12 level was in so called normal range if yours is below 350 then you need urgent treatment.the average dr will not even think of it.My life Saving Book " Could it be B12 ? "Available on fishpond a must read.My husband has just been diagnosed by me suffering 17 yrs of depression,shingles,facial palsy,clots & ulcers on legs,atrial fibrillation ,memory & hearing loss.If you are not treated your health will deteriorate .Educate your drs we are.

  • Thanks and Noted Marylyn. I'll be coming backer to take notes.

  • Marylyn how did you sort your B12 my doc told me mine was normal at 338 having awful time but I can't get injections. Have you any recommendations as to what to take. Thanks

  • Buy your own B12 on-line....or read the website I have posted in the very first post of this thread. You can learn as much as there is to know about B12 on that link and will be better placed to challenge your GP. You will read that in Japan the range starts at 500 and goes up to 1300. Sally Pachlok mentions that you need to be around 1000 to prevent cognitive decline - or Dementia ....

  • My dr tested me for MTHFR genetic mutation of b12 I have 2 types.I started on methyl b12 spray now using 2 sprays /day B12 485 highest it's been ,still have ringing in ears,numb feet& pins & needles in hands,internal vibrations but all less than 6 mths ago.I wasn't given injections as I have low cortisol levels which seem to give severe allergic reactions to drugs.Previous I took eutroxsig for hypothy. for 13yrs.but ceased it thanks to chemist .Levels have been normal since.I have not been well enough to work for 12 mths.

  • I have the ringing ears too. Numb feet and pins and needles less severe at mo. I can't imagine my doc doing those tests on me. One can but ask....

  • .....yes I agree - I mentioned all the B12 information in the very first post of this thread....

  • Checked the B 12 info Marz thanks did the questionnaire and it said. I was deficient will print it off and show it to my doc thanks for everything

  • :-)

  • Fibromyalgia just like low ferritin and folate and gall bladder problems are all seen to occur in patients long before Hypothyroid is actually recognised or the blood tests shift

    hence frequently patients have been developing hashimotos slowly over several years but the medics fail to link the dots

    see the work of Dr Lowe on the web ref fibromyalgia

  • I will, thanks. I believe that may be me.

  • I still don't have a diagnosis! I have treatment and a fees exemption card, but no diagnosis!

    After 14 endo appointments in 4 years I was discharged by a registrar who specialises in acute admissions in diabetes, with a letter to my GP which said that there was no endocrine reason for my symptoms but he might like to try me on T3! I had previously been on T3 for two years without success. I persuaded my GP that T4 would be a cheaper option and a year later I am well.

    The NHS have ignored vitamin D deficiency (my original reading was 10), low vitamin B12, low folate, low ferritin 16 (15-150), a see sawing TSH and FT3 and FT4 permanently in the bottom 30% of the reference range. I have even had to titrate my dose of thyroxine myself to find the level that removes my symptoms without making me hyper.

    Generally, the level of knowledge about thyroid disease in the NHS is appallingly low. I have a work colleague with Graves and TED who has had similar problems.

  • I'm sorry to hear you are still being messed about too :( I keep thinking about how much more productive this country could be of only people were treated properly, and I don't just mean thyroid patients. Too many patients are getting a raw deal at the moment.

    I hope you continue to see improvement.

    Carolyn x

  • That is very interesting. Glad to read you have success on T4

  • Thank you so much everybody for your prompt and generous replies. I will post my results and progress, and when I know where I am with it all will offer support and suggestions to others as you have done for me.

    Helen xxx

  • Hi Helbel, Love the photo...just adorable.

    Many alternative healers have condemned the fibromyalgia diagnoses because they think there is no such condition. And, also, because people end up suffering as you have and I'm sure there are many such stories. Thankfully my pain didn't fall into their fictitious points or I would still be on a plethora of medications as well.

    Keep telling your story as many are still unconvinced.

  • Thanks Heloise. I am truly understanding the unnecessary suffering and how our GP'S are hogtied by medical research and training funding sources. I think part of it is laziness too long as they cover there backsides many don't consider what happens to us until tests show our diseases. Having followed the fibromyalgia train for so long, I do believe it exists as a syndrome from a range of precursors. What alerted me was the significantly higher pain levels of other FM sufferers even though we shared a multitude of other bizarre symptoms. John Lowe believed hypothyroidism was at the bottom of FMS/CFS/ME...he might have been right. I am still amazed at how the array of terrible and sometimes life threatening body climates created by hypothyroidism is still commonly unknown in the mainstream consciousness

  • Hi Helbel! Love the pic of you and your cat. I'm a "cat lady" too, with two gorgeous rescue cats (4 year old girls).

    Anyway, my story is a familiar one too. I first got ill back in the early 1990's, diagnosed with ME/CFS in 1999. Then, around 8 years or so ago, the pain became even more severe than the fatigue. I was referred to a rheumatologist who diagnosed fibromyalgia - with just the tender-point test and no other tests to rule anything else out!

    At first I just accepted that as it did seem to "fit" my symptoms. But then about 2-3 years ago I started getting extreme "dryness" symptoms - constipation, dry eyes, skin, throat, etc. Persuaded the doc to send me to another rheumy who did some tests and ruled out lupus and Sjogren's syndrome.

    But, by accident when they were doing a neck scan to find out why my ankles were swelling (no, I've no idea why they were scanning my neck to look at my ankles!), they found some thyroid nodules (very small - they said there was no need to do anything about them). But that led me to do some more internet research - and that was when I discovered that ALL my symptoms were an exact fit for hypothyroidism.

    Sadly from the diagnosis point of view though, my TSH is "within normal range" and the docs won't do any further tests, so I remain undiagnosed. I've had some blood tests done privately though, and in a couple of weeks I'll be going to see a highly thought-of private doctor about possible thyroid/adrenal issues.

    So, yes, I do now think that the previous diagnoses I've had have been wrong and that thyroid/adrenal issues may be the problem. I'll have to wait and see what this doc says. He may just say I don't have thyroid/adrenal issues and it really *IS* ME/CFS and fibromyalgia - I just don't know which way it's going to go at the moment.

  • Oh Good Luck Caroline. They don't know enough about ME/CFS and fibromyalgia not least because it is still undetectable biologically with current test and research methods. Dare I say that one of the standard tests for HYpo is trying a bit of thyroid hormone and seeing what happens...I guess that is dangerous of me to say that so I hope you are reading Lowe, or Barnes or Peatfield et all. Lots of free extracts of their work online. My TSH was in normal range but now I can see that this has been building up over a few years. How the heck my GP missed adding the clues....beyond me. He added the clues once my blood tests were abnormal...quick scant over my previous symptoms added up to Myxoedema but he did not even tell me what sort of Hypo I had...'take this and you should start to feel better in a couple of months'. I just happened to note the diagnoses on the medical card application form from the pharmacist and assumed it was just a standard term. I hope the private screening tells you more. I am thinking of having some done for B12, and wider hormone profile. Private stuff cost a fortune in the UK and prohibits so many of us getting help elsewhere. My ankles have been swelling for several years on and off, and often coincides with depressed respiration (air hunger) so I guess the fluid goes up and down. My insistence on getting tested again when thyroid symptoms were looking really overt has just been in the nick of time....I hope. Good luck.

  • Helen- I have had a similar experience as you. Over the last 5 years that my body has been going downhill I was diagnosed with Fibromyalgia, Gastroparisis, and numerous other diagnosis. One doctor did diagnosis me with hypothyroidism and the next doctor said it was not hypothyroidism and took me off the meds. Over the last year everything came crashing down and I ended up having to go part-time on my job (I was very lucky my boss was so understanding) and could barely get out of bed. I hurt everywhere.

    Like Caroline, they found nodules on my thyroid and my thyroid started swelling. My general doctor ran a thyroid test and it came back low. She sent me to a specialist, who a month later, also ran a thyroid test and it came back even lower They finally ran a test for Hashiboto's and diagnosed me with Hashimoto's. They said that I have probably had it for years and that it just took everything falling apart to find it.

    My mom thinks I had already had symptoms when I was in my teens. My maternal Aunt, who I take after, has it as well. I am on NDT and building. I am feeling a little bit better and am holding out hope that all this crazyness will finally go away. Am I upset that they didn't find this earlier? Of course, I lost at least 5 years of my life for something that is easily treatable, and endured this physical roller coaster. At times I thought my husband would leave me, and I thought he had a right to, since I was sick all the time. Even after this diagnosis, I am still afraid to schedule anything, in case I can't make it, but I have to remind myself to just try to live my life from this day forward and not stay in that angry, depressed place of what should have been.


  • I feel just as you do Jennifer. I also am scared of scheduling anything...have to plan my life around flexibility which sometimes is impossible. The pain and fatigue and dizziness just takes over sometimes and I am a no go. Very hard for others to understand. Try not to feel bitter..easy to say, but I have learned a lot and grown in strength in other ways since going through this diagnostic nightmare hurtling from one scary illness label to the next.

  • Watch out it may not just be.

    You get fiberomylgia as part of Lyme Disease.

    The chest pain as Lyme Carditis.

    You need intravenous antibiotics

    but you will not get them if

    you can't afford £100 a day for 3 months.

    The NHS test for Lyme is poor result. There are others done in Germany and the US obvious private. Again not 100%.

    Breakspear Hospital do these.

    I had chest pain since August and the infections moves between spin and heart.

    Unless you have raised infection

    markers CRP being one you will not get intravenous antibiotics. The Lyme takes over and suppresses the markers so everything appears normal.

    It's only when the antibiotic reaches a optomen level you don't get that orally.

    It's one size fits all.

    I had a D diamond test which is supposed to be 95% accurate for inflammation and you've had a heart attack. Only I didn't show so they chest pain clinic throw me out. Just as I had a fit or stroke.

    I said it could be Lyme Carditis just before I had this fit. The doc said not.

    They put me in a wheel chair I was told A and E will not admit me as I already had the all clear.

    I was asked to leave and offered a ambulance 3 times.

    I could barely stand and walk. I was care in the community.

    Cut a longish story short Breakspear Hos. Said I had high uric acid and raised AST. A and E don't do those tests. The raised uric acid goes with Lyme and heart attack/stroke and diabetes.

    I am now on allopurinol.

    I don't think it's really doing anything. It's lowered the uric acid marker but the symptoms are still there.

    I am going for a scan on the 13th. Lyme does not show on scans. I should of been treated with intravenous antibiotics. Then

    scanned but that's not the case.


  • I have had a Lyme means nothing especially if it is a positive..or is it a negative, I forget. That is a whole other nightmare. I wish you luck on the meds. Are checking out other things you can do? Stop the lyme lies on fb is a great site.

  • Beautiful photo

  • Thanks Kirby gorgeous pussycat :)

  • Love the pussycat!

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