Hashimoto's Hypothyroidism and Dermatomyositis

[michaeloxon]

I was diagnosed with Hashimoto's hypothyroidism in May 2015 and began levothyroxine treatment. About the same time I developed muscle weakness, skin rashes and began to lose weight. These symptoms accelerated during the autumn and in December I was diagnosed with dermatomysositis. Fortunately no malignancy has been found so far and both conditions are responding to treatment. I should be interested to hear from anyone with experience of dermatomyositis associated with Hashimoto's hypothyroidism and what the longer term prognosis may be. I am 69 and male.

[Clutter]

Michaeloxon, muscle weakness is common in hyperthyroid and hypothyroid patients and will usually improve when thyroid levels are optimal. There aren't many posts on dermatomyositis on TUK but there are some in other communities in the link below.

healthunlocked.com/search/d...

[michaeloxon in reply to Clutter]

Thank you Clutter. The consultant diagnosed dermatomyositis because of the skin rashes, especially the diagnostic one on the back of the finger joints. This didn't itch but I had severe itching on the back, chest, neck and scalp. It was like eczema that didn't respond to the normal ointment treatments. I had a very high ANA level of 1:2560 in early November. I am glad you say muscle weakness is common in conjunction with hypothyroid conditions because the consultant was sceptical about this and looked for a malignancy cause as there is a 20-25% association with this, higher in the elderly. The weakness is already better as I have been on 125 mcg levothyroxine for several months now after going up to 150 and back down again. TSH was at 58 before diagnosis in May. So it could well be that varying the thyroxine level sparked the myositis off. Thank you for your help.

[Eliotf]

Michael- I am not sure if you are still following this... I have Hashimoto’s since the mid 1990’s I just got my dm last year & my dermatologist say it is from my CLL. I do a lot of internet research & never came across thyroid issues & dm. Only about ⅓ of dm patients have an underlying condition. I had my CLL first. We think a treatment allowed my dm to rear it’s ugly head

[Langt64 in reply to Eliotf]

Hi, just read your post. I have Hositmotos for over 25 yrs. Just diagnosed dm in June .i only have the rash which is horrible. How are you doing now?

[Eliotf in reply to Langt64]

Langt64,

It has been a long journey (time-wise) Today I am doing much better. I am getting IVIG monthly for my DM. So far I have not had the muscle weakness. I only have a few small rashes. My Dermatologists say it is from my Chronic Lymphocytic Leukemia (CLL) my CLL specialist says nope it is not. I am hoping that it is not from my cll, which means as my cll gets worse so does my DM. I am getting 180 grams of IVIG (based on my body weight of 195lb. It is very costly! About $20,000 each day and I do it 3 days in a row every month. One of my Dermatologist told me I would have to be on it for life. Thankfully I have good insurance. I am not sure where you live, but make sure you speak up. I do have on going issues of not being able to exercise as the little bit I do makes my muscles feel like I did a very heavy work out and it stays that way for about a week or so. SSRI (depression meds) affect the thyroid in a major way! I was given something like hydroxazine (I think) which took away the rash, but major dry mouth. Steroids work too, BUT don't do them for a long time like I did. It effects everything in your body. Some things do not recover after being off them. One of the big issues with DM is possible infection. So if you think you have some infection run to the doctor. It can also progress into your lungs and that is not good. I hope that is not too much. The name for yours and mine is amyopathic dermatomyositis(the newer name) the other name is dermatomyositis sine myositis. I really could not find much on the linking of the two disorders except this: when you have one auto immune disorder you end up with several. I have Hosimotos(mid 90's), CLL(2013), DM and oral lichen planus (both in 2017). All are auto immune disorders. ugh