Last reply 2 months ago
Lemtrada and thyroid

Hi everybody, I’ve not posted here for ages and this isn’t totally MS-related but maybe somebody here is in a similar position.

I was treated with Lemtrada 2015-2016. It has to be said that overall it’s been a raging success. I’ve had three annual MRIs showing no progression and even some improvement. I am symptom-free

This is super-amazing and everything but I have been one of the 30-odd percent of people to develop a thyroid issue and oh man that sucks.

So, I developed Graves disease last summer and was massively overactive to the point where I needed like three months off work.

I initially had some success with the medication to bring my thyroid levels down and most people are able to sort themselves out this way. It’s not really working for me though.

I saw my endocrinologist last week and he recommended surgery as my levels were coming down so slowly.

As a Lemmie I’m used to picking the biggest, scariest option with the best chance of helping me out but still I’m a little freaked out.

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billybilo
2 months ago

I’ve also developed Graves after Lemtrada, one month before 2nd round. I didn’t have very high levels of T3 and T4 (near normal) but my TSH level was to low, 0.001. For now I only have medications and they seem to work, but my doctor told me that it’s almost certain that I will have surgery in the future.
I’m sure that everything will be alright. 🙂 Keeping fingers crossed for you! 🙂


shelfie
2 months ago

Aw thanks so much, I hope everything will be alright for you too.


dmargarita
2 months ago

@shelfie I am 8 months post R2 of lemtrada and i have my MRI next week, and i hope its as working as good for me as it is for you :D.
After round 1 , i had hypothiroidism but after round 2 everything changed and my TSH levels dropped to 0.005. I dont have graves, but still, i had to get treatmen for the Hyperthyroidism. The medication didnt work for me so i had radioiodine therapy and its been working very well so far. After the treatment my TSH levels went up so now i have hypothiroidism (again), but this was expected and now i take Levothyroxine every day. if you have any other questions please let me know and dont worry everything will be allright

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