Graves Disease and Muscle Ache

I was diagnosed with Graves Disease 3 years ago and over the past 12 months I have started to suffer with muscle ache down the left side of my body. My endo keeps saying my levels are 'fine' even though i am still getting the usual symptoms of feeling spaced out, breathlessness, panic attacks and tightness in my throat and the muscle ache.

Over the past month my muscles have been getting worse to the point that I am struggling to walk and move my left arm, I am also getting pain and weakness in my shoulder, up my neck on my face. I am in agony when driving and whilst at work, but if I dont work I dont get paid and cant pay my bills so I force myself to go everyday.

I last saw my endo at the end of June and they have finally agreed to remove my thyroid to alleviate the symptoms, but I am still waiting for my surgical appointment.

Has anyone else had this with their muscles? and does anyone know how long I will have to wait for my surgery? This is now really starting to affect my life, work and my marriage and seriously need help.

4 Replies

  • Have you got copies of all your blood tests along with their lab ranges? Perhaps your results are 'fine' for someone else - just not for you. If your lab ranges are anything like mine they are enormous.

    At the moment I'm getting a lot of muscle aches, not like they were when my Graves started in 2012, I was on block and replace and have been in remission since I stopped in 2013. I've got an appointment to see a Rheumy because my doctor thinks it is rheumatoid arthritis and I'm sure it is although I'm wondering if it could also have fibromyalgia, I've got similar pains in my neck and shoulders to what you describe.

    Driving can indeed be incredibly painful when the pains are bad. I gave my husband a lift the other day and he asked why I didn't turn round to look over my shoulder - he knows I'm always moaning about my neck etc, don't think he realised it just didn't work properly - I rely my mirrors a lot. If it's any help I have found that a nice long soak in a bath with a cup full of magnesium flakes really helps the aching body.

    Could you be under active? I'm sure I am, my TSH has gone up a lot since I stopped treatment, I'm tired, have muscle aches and high cholesterol, plus feeling cold and tired but I'm 'within the range' so that's Ok!

    What are your results for B12, vitamin D, folates and ferritin like? If you are deficient in any / all of them. You won't feel good.

    If you've got your results post them on here and people will comment on them.

  • I too have Graves and have periods of several months at a time when the muscle aches overwhelm, frozen shoulder is the very worst where one minute you can use your arm normally and the next you can't move it away from your body for days because of the pain. This tends to cover one side of the body at a time and then the next batch will gravitate to the other side. I have this morning been diagnosed as having osteo-arthritis in my right knee - the difference to these other dibilitating aches and pains is the physical clonks going on. I think I'm right in saying that removal of the thyroid will not "cure" the Graves. I found that being on thyroxine made the aches and pains very much worse and this is the direction removal of the thyroid takes you.

    I have gone back onto just Carbimazole after doing block and replace. I found the thyroxine too much of a problem and prefer to adjust my Carbimazole - I know that the moment I start to nod off during the day or whilst watching TV at night that I am on too much. The aches have certainly been very much less without the thyroxine.

    Not a lot of help, sorry. I will say that my life has changed for the better in the last five months, having got rid of a lot of stressful situations, and the body is handling it much better and a visible reduction in my goiter. I think what I'm trying to say to you is don't think it will never end, if you find a spot of "me" time in all this, it may just help.

  • Please do lots of research before having your thyroid removed as it can make matters worse.

    As someone else mentioned even if they remove it you will still suffer from Graves disease.

    What medication are you on?

  • Hi, I'm very late to this post I know, but just wanted to add to it as I've yet to meet a single human being who has connected muscle pain down one side and traveling to another with Graves - yet this has always been my main and debilitating problem. My very first symptom was left upper thigh pain which made me limp. This went to my upper arm on the left side 2 days later, then travelled across to the other side a week or so later. On carbimazole now which is helping a lot, but left with a frozen shoulder and mush for muscles.

    Interesting to read above that thyroid removal may bring back the muscle pain. Anyway, as someone who feels a bit alone in my muscle pain right now, just wanted to say thank you for putting this post up - proof I'm not completely nuts to think its connected!

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