Hypothyroidism - M E/CFS

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HI all

Most of us know that being hypothyroid causes symptoms of ME - Chronic Fatigue Syndrome. I've been seeing an endocrinologist for a few months now and she believes I have ME alongside my hypothyroidism and is going to have me referred to a specialist to have me diagnosed. She said the muscle pain, fatigue and tinnitus is all part of ME. I believe it's all to do with the thyroid but you know what it's like battling with the NHS.

I'd be interested to hear from anyone who has been diagnosed with both ME/CFS and hypothyroidism.

ms

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9 Replies

  • Posted

    Hi Ms1

    I have Fibromyalgia which can also co-inside with an underactive thyroid, it took a year of this pain and fatigue to get my diagnosis. I googled my symptoms and I knew before I was diagnosed I had my condition. I felt I was banging my head against the wall as no-one wanted to listen, and so it was a relief when I finally had the diagnosis. I hope you get your answers soon.

    Regards x

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  • Posted

    Nice to hear from you again SES, thanks for replying. I think you did once mention fibromyalgia before on one of your comments. I'm just waiting now to see what happens next. I've stopped complaining and am just taking each day as it comes. My mood is slightly better than before, I'm not crying all the time like I use to and think that's a result of the thyroxine working over time. I'm still split dosing between 75 and 50 mcg.

    Take care

    ms

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  • Posted

    Hi there Ms1,

    When we are feeling low though we fear all sorts and once someone starts listening it picks our spirits up somehow........ nothing worse than no-one listening as you feel that your going mad like I did!!!!! So glad to hear you are taking one day at a time as that's all I do, the best way of coping!!! My consultant said I had to learn how to pace myself, easier said than done when I have a two year old having tantrums lol anyway pace yourself hun x, I had my first Support group meeting that I organized and it was good to hear other people with similar feelings and pain, knowing I was not alone, there is five of so far with the same condition, it is good to talk! :lol:

    Anyway hun, take care of yourself and I hope you get the answers soon xx.

    Kind Regards

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  • Posted

    Hi, reading your posts I am also very glad to know I am not going mad!!! I've been getting on with this condition for nearly two years now, and I do feel miles better than I did two years ago, but I do still get times when it all seems to go awry and I'm thrown into complete chaos. My mind gets fugged and I feel low, but this does pass and then I'm back on track. I am beginning to acept that this is part of the condition and make the most of each day and hang on when things take a dive. Keep going everyone, things do get better. although you may have to accept life will be different with this condition. JJ
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  • Posted

    Hi there Jeanjeannie

    [quote:193441e71b]Hi, reading your posts I am also very glad to know I am not going mad!!! [/quote:193441e71b]

    Good quote as that is the point that we all feel when we do not know what is happening!!!! If some medical professionals listened to us more we could maybe feel somewhat better? and having their support we would be able to cope better, as I felt like I was dying or something and when I saw a Pain Registrar and then a Rhuematologist they both said I had Mechanical back strain I cried so much after I had seen these so called professionals :oops:

    Anyway finally getting the diagnosis made me realize that I wasn't going mad but was just mad on the treatment I had by the NHS. I started a Support group in my area due to all the problems I had and I am going to make this dreadful condition known in my area, as I have had publication in my local newspaper and a doctor that specializes in this illness is going to do a chat for us, so this is something interesting to look forward too :lol:

    Hope you all are having a good day xx

    Regards

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  • Posted

    Hi my daughter has been unwell for over a year constant bad throat headaches feeling lethargic all the time sometimes sleeping most of day no energy been to paedtrician had normal tests MRI scan showed a small growth but said this is not causing the symptoms she has blood tests revealed subclinical hypothyroidism but very time we go back results go back to normal she has episodes of where her vision breifly goes making her light headed and pale ( well she is pale all the time ) she has also started with eye twitching she was fit and healthy before all this never missed school now after 1 or maybe just an afternoon in school she is exhausted. I have researched her symptoms and ME keeps popping up but this is never mentioned with any of the 3 specialist she now sees any advice and what you think will be very helpful
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    • Posted

      This is exactly what's happening to me

      Been told iv got sub clinical under active thiroid yet my fatigue is so severe I have started having to use a wheelchair. I really don't see how a mild thyroid problem could cause this.

      Hope you manage to get help for your daughter.

      I Def think theres some connection between cfs and a mild thiroid problem. I think when you have cfs your much more susceptible to other problems

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  • Posted

    Hey I know this forum is old but thought I'd try and get a response

    I'm having sort of the opisite problem.

    I know I have more than a thiroid problem.

    Basically some of my symptoms of M.E - chronic fatigue syndrome go back as far as 8 years.

    Doctors were heading in the direction of the cfs diagnosis but another test says I have a very mild thyroid problem. A borderline score in fact and now they just focusing on that but my fatigue is so severe I have had to start using a wheelchair.

    I really don't see how a mild thiroid problem could cause that level of fatigue and I have all the other symptoms of M E. i didn't react well at all to the thyroid medication and don't want to try another one as they seem so toxic. The doctor does actually think I do have M E but said I can't now be diagnosed because of the very mild thyroid problem when it's only just shown up,it's a borderline score and I knlw I have more than this thyroid problem. Could anyone give me advice on how to get cfs properly diagnosed and reconized

    And if anyone has had a similar expirence please comment. It's causing me so much stress and making me very depressed

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  • Posted

    Hi

    I'm really interested in your outcome as

    I have an underactive thyroid but feel awful all the time. I had repeated trips to the doctors for 3 years and have since given up cos I just get fobbed off because I have a thyroid problem. According to my blood tests my TSH is controlled??? But I feel foggy all the time, completely worn out and like I haven't slept when I wake up...then I sleep in an afternoon too and am still drained. I ache, my eyelids twitch and I get really low moods and anxiety. There's probably other things but they're the things that stand out daily.

    Because of your situation I wonder if I should persist with the docs

    Thanks....A

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