Last reply 4 days 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
9 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
9 months ago

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


dmargarita
9 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


itati
5 days ago

@dmargarita I have been diagnosed with hypothyroidism six months after my second lemtrada infusion. I’m feeling very sad and tearful atm about this new diagnosis and the prospect of needing lifelong medication, although it explains why I’m so tired lately (I was feeling almost back to pre-ms after my second Lemtrada infusion, up to a couple of weeks ago). I’m kind of kicking myself for trying everything during a recent Asian holiday, after reading that too much soy and seaweed are bad for your thyroid, if you’re at risk of these sort of issues…
Anyway, your post is reassuring, so thank you. About the levothyroxine, do you get many side effects?


dmargarita
5 days ago

@itati I also got very sad when i started having thyroid problems, however my experience with the levothyroxine its been veryyyy good so far. I have no side effects and i started to feel much better short after starting the treatment. The most important thing is to take the levothyroxine first thing in the morning and wait at least 40 minutes before eating anything. I found this website which answered many of my questions
https://www.thyroid.org/hypothyroidism/ maybe it will help you to. If you have any other questions I’m happy to tell you about my experience. 🤗🤗


imbarca
4 days ago

@shelfie I’m sorry that yours hasn’t responded to meds. Mine did after going bonkers after rd 1 and rd2. It sort of seemed to fix itself. If it’s any consolation, I know a fair few people who’ve had radioactive iodine or surgery for graves and all are fine now, just taking levo.

@itati Please don’t beat yourself up over your holiday. Six months post is absolutely typical for a lemtrada induced thyroid issue, its almost certainly nothing to do with what you ate. They think the true figure of thyroid problems in Lemtrada is closer to 50% now. But, really it’s nothing to worry about. I was hypothyroid before Lemtrada and it pales into insignificance compared to MS. Loads of people get thyroid issses anyway – Levothyroxine is the 3rd most common prescription drug in the uk and us. It’s just thyroid replacement so has no side effects unless you take too much.

For anyone with an underactive thyroid, the main thing is to make take enough replacement to feel well. I only function properly if my TSH is under 2. Its so easy to put underactive symptoms (fatigue, weakness, low mood, anxiety) down to MS when they might be fixed by upping your thyroid meds!


tracyd
4 days ago

R1 – May 2015
R2 – May 2016
Thyroid Hypo – Jan 2018
Thyroid Normal with Mds June 2018
Thyroid Hyper – Jan 2019
Thyroid Normal – March 2019

When my thyroid is on the frisk I feel like a tyre that’s had all the air let out of me, like the truck than ran me over reversed back over me again to make sure I am good and squished.

I taught me what fatigue is, and thats something MS never managed to do to me.

That said, I can walk again unaided and my sight is just as crappy as it always was so the improvements I had post lem have held and a funky thyroid whilst annoying isn’t causing lesions in my brain and spine so it’s all good 🙂 xx

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