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EndocrineWeb Community Advice

Chronic weakness

From: Hashigirl - 38 weeks 3 days ago

Hi I am new here. I've had Hashimoto's disease for 10 years. I've been on meds since diagnosis but over the years have had waxing and waning muscle weakness and joint/muscle pain that comes and goes. I have gone through better periods and terrible periods where I am so weak I have trouble getting around my house. The weakness and pain has been in my legs, arms, and sometimes neck muscles. It seems to be much worse when my labs are off, but even when labs seem good it doesn't resolve. It has been very limiting in what I can physically do. I have had an extensive workup with many many things ruled out. My neurologist is suspecting a mitochondrial myopathy (I am not sold on this). I am having a very expensive genetic test which will tell us for sure but it takes 6 months to come back. I truly believe this is all from Hashimoto's disease but while I've found some people who seem to have these symptoms sometimes, no one who suffers from them chronically (waxing and waning) and no one who gets as bad as I do. Is there anyone here who has chronic muscle weakness/ pain that waxes and wanes but is seriously limiting physically?? I've tried adding cytomel and became hyper which made things much worse. Briefly tried armour and became hypo. I'm too scared to try either of these again bc I was at my worst when I tried to switch over. I'm currently on tirosint only and of course my endocrinologist says none of this is from Hashimoto's disease. I'm at a loss!! Thanks.

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Hi Hashigirl
This forum doesn't seem to be very active. I have muscle weakness, but was only diagnosed this past May. I feel like I have t lie down after walking up stairs and rest after walking around too much. My left shoulder muscle has been inflamed for weeks. I KNOW this is from Hashi. I strongly encourage you to try and find someone to help you who believes yours is.

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