Hypothyroidism & CFS/Fibromyalgia

Is there a connection between hypo, CFS and fibromyalgia and how do you diagnose if you have it or not as all the doctors will say when you explain your symptoms "its your thyroid", I am just about fed up with that answer, surely it cant all be to do with your thyroid, I constantly ache, im tired, brain fog, mumbled words, forgetting things, blurred vision, disturbed sleep, wanting to stay in bed in the morning, but I make myself get up even though I don't want too, I don't want whatever is going on with my body to mess up my life but I wish I had an answer to my problems and then I could just get on with it.

Thanks for listening to my rambling.

Tina

25 Replies

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  • Tina I would take a look at dr myhills web site to get a clearer picture on this. Loads of great information on there and tests you can take if you so wish. The tests can rule in or rule out possible causes of your symptoms.

    Unfortunately, the same symptoms seem to cross over to many illnesses. It's a often time long battle to find out what's truly going on inside.

    My advice would be to get a handle on what possible illness/illnesses you might have then take the relevant test! Guessing can cost money!

    Simon

  • Thank you do you have a link to this website or do you know what I have to type in to find it.

    Tina

  • I have had ME since I was a kid, Mr Pinchin was the CFS/ME specialist until 2yrs ago (now retired) there is a lot of his papers & works out there to read which maybe helpful, also ME support groups which also have helpful information.

    I know how you feel thou, my thyroid is always judged that it could be my ME troubling me, its seems if they can blame one or the other depending on what your docs feels that day. My doc not helpful with my ME, but nurse is & got me to the specialist.

  • These diseases were only named about 10 years after the TSH blood test came into use. This is a link which shows how Dr S (virologist) became involved in thyroid conditions.

    worldthyroidregister.com/Go...

  • If your doctor is saying "it's your thyroid" be very, very, very, very grateful. That means he is attributing your symptoms to something he (or she) knows is treatable. Of course, finding the right treatment is why this site exists. I have been ill for 37 years - ME. That is a diagnosis that I no longer accept. It means nothing. Why do I say that? Because there is no test for ME and the instant you are told you have it, it is used as an excuse to do no further testing and to offer you no treatment. I strongly believe that ME is a subset of endocrine system malfunction - and thyroid is part of that system. I think it probably includes the whole endocrine system - adrenals, ovaries/testes/pituitary and probably other things as well.

  • Snap! Great minds think alike. lol x

  • Totally agree.

  • see my comment above.

  • I am convinced (and I'm not alone) that CFS and Fibro are both un/under-treated hypo. All the symptoms are hypo symptoms. And if your doctor doses by the TSH and considers anything that's 'in range' to be just fine, then you are bound to be left with continuing symptoms. Therefore, he has to come up with a reason for your continuing symptoms. And what could be easier than inventing a couple of new 'diseases' to explain everything?

    There are no blood tests for CFS and Fibro, there is no cure. And there's not even much of a treatment. Doesn't that sound suspicious to you? And the strangest thing is that people who have been diagnosed with either of them, and then get their thyroid properly treated find that their CFS/Fibro symptoms disappear...

    In 'the old days', hypo was diagnosed and treated by symptoms, using NDT. Then Big Pharma found it could make a mint by 'inventing' synthetic T4 and the TSH test. Using these, a lot of people were left with many many symptoms but doctors said 'your TSH is normal, it's not your thyroid'! And suddenly, as if by magic, a lot of new 'diseases' appeared : CFS, Fibro, IBS, etc etc etc and these were used by doctors to brush away the continuing symptoms and, at the same time, make even more money for Big Pharma by prescribing lots of pills to treat your CFS etc symptoms. It's so convenient! Suddenly you don't have to seach for the root of the illness and learn how to treat it, you can just say it's CFS or whatever and dish out a pill. Perfect lazy medicine! (And if anyone wonders, yes, I am being sarcastic! lol)

    Yes, mummytina, it can all be down to your thyroid. Every single cell in your body needs thyroid hormone, and if you haven't got enough to go round it can cause an incredible number of problems. Don't get me wrong, I sympathise with what you're going through, but if you have a doctor that actually says it is all due to your thyroid, then you have found a rare pearl. Of course, it does then depend on what he does about it. But it's much better that way than him trying to fob you off with an incurable, untreatable 'disease'.

    I truly believe that by insisting on a diagnosis of one of these new syndromes - because that's what they are - we are shooting ourselves in the foot. If the medical communtiy finds that we are content - nay, eager, even - to label ourselves as having CFS etc, they are never going to bother to treat the thyroid properly. It's only by saying no, I won't accept that, I want a raise in meds, that we are ever going to get the message home.

    Your symptoms sound like you need an increase in meds. Have you had a blood test recently?

    Much hugs, Grey x

  • Well, this is different, they SAY it IS your Thyroid? well usually we get posts that it's anything BUT your Thyroid.

    Personally my GP tried to suggest CFS/ME after I had a partial thyroidectomy (half a thyroid out ) so I'm sorry but I'll stick to the one obvious problem for now.

    As Sporty says, yes the symptoms overlap (and I'm in no way detracting from those debilitating symptoms) - but you have to take one thing into account, the TSH test. This was invented and taken notice of in the 1970s, then it became 'the diagnosis' - before that we were treated for Thyroid problems - by symptoms. (when did CFS/ME appear?) Now even if they see 'classic Thyroid symptoms' they 'confirm' by blood tests - but if it's not in your blood some do a U-turn and think of something else. Do blood tests tell you everything? Do we get a blood test for CFS/ME or depression? Meanwhile Thyroid hormone affects energy in every single cell and metabolism.

    The TSH test is actually a signal from your pituitary, FT4 and FT3 are measurements of what is in your blood. even those in 'normal range' doesn't actually mean your Thyroid is working optimally for you. And for it to work properly you need to eliminate other deficiencies such as low iron/ferritin, folate/B12 and Vitamin D (hormone) - just for starters - other things like magnesium and selenium are needed in the mix too. (livestock farmers knew this in the 1930s).

    1 in 300 have CFS - 1 in 20 have Thyroid problems. Best bet is to sort the Thyroid out first!

    If they're saying it IS your Thyroid - what are they doing to help you?

    Sorry - seem to be a rambling a bit too (as untreated) Jane :D

  • agree with GG & rosetrees- I am just too slow to answer J

  • Dr lowe knew the connection....

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

  • there was a recent poll coducted on the fibro website which suggests that 50% of people with "fibro" also suffer with hypothyroid, which supports all your comments and deserves further investigaton in my view.

  • ......I agree with all the above comments regarding the connection with the Thyroid. I was diagnosed with FM 12 years ago by a Rheumatologist. My Hashimotos was diagnosed in 2005 here in Crete. Once on treatment I improved a great deal and the improvement continues as I pick up pearls of wisdom from this site. PLEASE read all the tags on Fibromyalgia and I am sure you will soon learn so much. ( Click onto 'See more tags ') on the right of this page and go from there.....

    Happy reading.........

  • Thank you for your answer I'm off to see my endo today so I will ask about cfs and fibromyalgia and will let u know how I get on.

    Tina

  • These are some links but the Endos of today do not know about how thyroid conditions affect your metabolism and only go by the TSH and not clinical symptoms.

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

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

  • Agreeing with GG. rosetrees and spareribs. I was diagnosed with CFS in 2009 and offered anti-depressants. In the meantime I have managed to get a diagnosis of hypo and then lost it again (long story), but fixing my appallingly low vitamin D level and bringing ferritin up to somewhere near where it should be (which has taken 4 years!) have relieved many of the symptoms, and in particular the fatigue.

    Why should we accept a diagnosis of a condition with no diagnostic test, no real treatment and an infinite variety of symptoms? Cop out!

    AN

  • I wish there was a "like" button. There isn't ---- so ----- "here here"

  • ......and............... why are doctors so willing to "diagnose" a condition for which there is no test and no treatment?????

  • Gets them off the hook I guess. I also think a lot of them really just do not know.

    My favourite was the endo who pulled his chair up [too] close to mine and looked into my eyes saying ‘Now has anyone talked to you about chronic fatigue?’ I asked why should I accept a diagnosis of a condition with no diagnostic test, no real treatment and an infinite variety of symptoms, at which point he looked horrified and scuttled out of the room to speak to the Head Honcho. He was gone about 20 minutes and then he strode back in and said ‘Right, about your vitamin D deficiency – we think you need an injection!’

    Result!

    AN

  • ooooo - another "like"

  • Totally agree with the Fibro/CFS idea that it has to stem from somewhere.

    Diagnosed with CFS 13 yrs ago and then with Fibro 5 years ago with a gap of 1 year between the two when I felt a little better. However, ALL of my symptoms were always hypo mixed with adrenal fatigue and now the menopause.

    GP and endo discount rising TSH and low FT4 for the last 13 years as of 'no significance' and being on the end of it for so long we begin searching ourselves for any self-help we can find.

    For me, rearranging my diet, sorting my sleep out and increasing my exercise have had only minimal effects but after confirming that it wasn't Hashi's I've started to supp with selenium, minimal iodine, Vit D3, Magnesium, B12 (all of which were low) and Vit C and removing nearly all extra sugars.

    At last things are improving. More energy, less pain, muscles working in places I'd forgotten I had, better digestion and less fog and anxiety etc. If it's beacuse I'm now supporting my thyroid and adrenals then there is indeed a real connection.

    The CFS was confirmed as a hypothalumus/pituitary axis malfunction anyway so it doesn't take a genius to see the connection onto adrenals and thyroid.

    I do wish someone, somewhere could see what we see without fearing for their reputations!

  • I was diagnosed with ME over 4 years ago but I'm recovering - about 85% back to normal - no help from GP of course!

    From my experience it's worth checking adrenals and thyroid - you can get a DIY indication if either/both are struggling using the Broda Barnes temperature test, of for adrenals, get your GP to measure blood pressure sitting, then standing: if BP drops it indicates struggling adrenals. Then you could follow up with more detailed testing.

    A lots of other symptoms/signs can be linked to deficiencies in these glands:- low thyroid is often accompanied by weakened immunity and compromised digestion, so you may find you have low levels of key minerals/vitamins such as iron, selenium, vit B, vit D etc which would further undermine the performance of the thyroid.Low levels of selenium can also affect the performance of the mitochondria in every cell of the body - these are effectively our "energy power plants".

    I started by sorting out my adrenals, then my thyroid, digestion,and so on. It requires detective work and a real commitment to getting better e.g you may need to change diet or lifestyle, but it can work!

  • This conversation has intrigued me.

    I have thyroid antibodies at 253 (tested in May 2015). I was diagnosed with Hashimoto's and then this was reversed as TSH was normal. I was put on thyroxine and was showing signs of improving before they took me off it.

    I've had tests for Addisons and had adrenal antibodies checked - all normal.

    Vit D at 100

    B12, Calcium, iron all normal.

    Tested for Lupus, Sjogrens and inflammatory markers - all normal.

    But still have symptoms that suggest autoimmune thyroiditis: feeling cold, fatigue, aches and tingles in arms and shoulders, hair loss, weight gain (to lose weight I had to go below 1000 calories a day), puffy face, constipation....

    I was diagnosed Coeliac nearly 4 years ago and have been off gluten since then. I am osteopenic as I had Coeliac for 38 years before diagnosis, so the endocrinologist said that taking thryoxine for no reason would make this worse. I obviously didn't want to exacerbate this to get osteoporosis!

    Now, as everything else has drawn a blank, I'm about to be diagnosed with ME/CFS. Fibromyalgia was considered but as the fatigue is worse than pain it's more likely to be CFS.

    But I'm going to talk to my GP again about sub clinical hypothyroidism - and remind him that I felt better after being on thyroxine (I have an appointment next week). The pattern of illness went from very bad, to better on thyroxine and now back to very ill over almost 9 months (I was on thyroxine nearly 2 months from the 4th month, first 25mcg increased to 50mcg). My GP was sceptical when I told him I had to come off the thyroxine after seeing the endocrinologist as he was convinced that I had Hashimoto's.

    The medication I've been given for CFS (or possible FMS) is making no difference at the moment (been on it a month) so I am almost convinced it's my thyroid.

    Anyone had a similar experience and been able to convince the medical profession??! :D

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