Myopathy due to thyroid disease.: Hi everyone, Iv... - Thyroid UK

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Myopathy due to thyroid disease.

yorkshiregirl44 profile image
11 Replies

Hi everyone,

Iv recently been to see a neurologist due to muscle weakness. He is now testing me for Myositis and says if the tests come back negative then i have myopathy due to my thyroid disease.

Im wondering if anyone with thryoid disease has be diagnosed with either or both of these conditions.

Thanks

Christine

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yorkshiregirl44 profile image
yorkshiregirl44
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11 Replies
yorkshiregirl44 profile image
yorkshiregirl44

That may be a good option for me. I dont feel i can continue with these pointless referrals. The weakness im describing does not fit with any of the conditions they are looking at.

Thanks

Christine

Clutter profile image
Clutter in reply to yorkshiregirl44

YorkshireGirl, muscle weakness is common in hyperthyroidism and hypothyroidism. I was unable to stand from a squatting or kneeling position for several years without using my arms to pull or push me up. I had nightmares about pulling racks of shelves down on my head in shops. I've been optimally medicated for over a year now and my muscles are becoming stronger, but not pre diagnosis strength, and there are still times when I need a hand up.

Mabes profile image
Mabes in reply to Clutter

I agree with Clutter. Both my mother and I suffered with this terribly. We would be stuck on the floor. It also affected our arms. It was as if the power had gone - no turbo injector feeling behind a movement - so that if I tried to lift or especially lever something, I had no strength behind me to do it! I'd be left flailing helplessly like a stranded whale.

My mum really lost a lot of confidence in herself as she couldn't trust her body to support her movement in certain activities. It has much improved since NDT and she has resumed activities like golf - it's been wonderful to see.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to Mabes

Its encouraging to see that there is life after this horrible disease. Im not sure whats stopping me trying NDT..maybe just fear of the unknown.

Thanks

Christine

yorkshiregirl44 profile image
yorkshiregirl44 in reply to Clutter

Thanks Clutter,

I think your right, thyroid disease can cause lots of these symptoms, we know it so why dont the medics. The weakness is worse that before diagnosis and comes with no warning.

I feel that some of my weakness comes from my spine problems at the cevical level. I can actually feel my strrength going when my neck is flexed in certain positions which affects my breathing, more so when i am laid down.

Really fed up with specialists only taking a part history and not listening to what the symptoms really are.

Thanks

Christine

nightingale-56 profile image
nightingale-56 in reply to yorkshiregirl44

Hi Yorkshiregirl, I had a little episode like this a couple of weeks ago, when I felt very weak and felt as though I was fading away. I also could not walk as my legs just would not work. I also have back problems - two slipped vertebrae, L4 and L5, but did not think of my back as nothing actually hurt. I got taken to A & E, where after doing bloods the doctor said they could not help me as we were all thinking it was thyroid problems even though I was in a wheelchair. When I got home again, my back did begin to hurt a bit and that was when I began to wonder. I went to Physiotherapist next day and have improved a bit since then. Do feel however, that my adrenals are suffering at the moment and the back was the last straw, as have collapsed like this when I have had a shock before. Just done saliva adrenal test, so hope this shows up something. Hope you improve, and it is about time they connected all our history.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to nightingale-56

Its ineresting what you say about your back also. The first time i expereinced severe weakness, it started in my legs, they felt heavy like led, the weakness went up as far as my shoulders and i fell to the floor. Half an hour later i expereinced severe lumber spasms, later resulting in slipped discs which caused sciatica.

I dont think its a coninsidence, my upper weakness i also believe is caused by my cevical spine problems.

I feel so frustrated that im having all these tests and no-one is listening to how i am describing my symptoms.

I agree with you they do need to start conecting symptoms and stop waisting both time and money with poointless referrals.

I went to see Dr.P a couple of years ago and was told i had adrenal exhaustion, i started on supplements but felt no better so stopped them.

I hope you get some answers and keep in touch.

Christine

nightingale-56 profile image
nightingale-56 in reply to yorkshiregirl44

I also saw Dr P in 2009 and started the Nutri-Adrenal, but could take no more than one tablet. However this one tablet makes me feel much better. I stopped it at the beginning of May for an Adrenal Stress test,which I am sending off today. I started the NA again this morning and already feel calmer. Will keep in touch and you do the same. PM if necessary.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to nightingale-56

Yes i will keep intouch it really helps to find out how people have managed their symptoms and got well.

Hope things go well with your test.

Christine

Mzahid profile image
Mzahid

I have been tthrough severe myositis and that was the reason I started investing and got blood test done and found anti bodies in my blood for thyroid.

Sometimes I still get it, but gets ok when thyroid levels are ok.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to Mzahid

Thanks for your reply.

Can i ask you what your weakness feels like? i dont think i have myositis, i think my weakness is coming from thyroid disease and or cevical spine.

Thanks

Christine

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