Hyperthyroidism and Pegasys: Hi everyone, I have... - MPN Voice

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Hyperthyroidism and Pegasys

ts75 profile image
ts75
7 Replies

Hi everyone,

I have been on Pegasys for my ET for about 5 months and have now found out I have very low TSG levels and too high t4, i.e. hyperthyroidism.

Has anyone else experienced thyroid problems and did they have to come off IFN?

Thanks!

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ts75
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7 Replies
hunter5582 profile image
hunter5582

Thyroid issues are a potential adverse effect associated with the interferons. You will need assessment by a MPN Specialist and an endocrinologist to determine what is causing the alteration in thyroid function. If Pegasys is the cause, you may need to change medication.

Please do let us know how you get on.

Mirror368 profile image
Mirror368 in reply to hunter5582

Hunter,

Thank you for the information. Years ago I had a goiter and still have many thyroid nodules. I see an endocrinologist every couple yearss, have an ultrasound each time. I will address this with him if I decide to switch to Pegasys.

Eileen

Izzys-Mum profile image
Izzys-Mum

Yes I'm on pegasys (about 3 years now) and my haematologist found my thyroid was under active last year, I'm now on meds for it, still on pegasys and feeling so much better. It was only my haematologist bringing it up with my GP that I was able to get meds as the GP's blood tests weren't as through - hope you get the help you need.

ainslie profile image
ainslie

I am no expert on Peg and thyroid but I do know Peg etc usually causes high TSH ie hypothyroidism, your Haem should be able to advise

KLCTJC profile image
KLCTJC

I did, but was the opposite. I had always had a sub clinically high tsh but never complained so they didn’t treat it. Well, Besremi made it official and now I have hypothyroidism. I am on 100mcg of levothyroxine and it is currently controlled. I would see an endocrinologist with hyperthyroidism, that is a little more complicated to treat sometimes. What I meant by that is endocrinologist know that condition better and better treatments and sometimes procedures for it. When I worked in primary care I would refer my patients with hyperthyroidism, but hypo is so easy to manage because of levothyroxine. Hope they sort it soon! I was terrified because I didn’t want to stop Besremi. Thank goodness I didn’t have to. Good luck!

ts75 profile image
ts75 in reply to KLCTJC

Thank you! I have paused Peg until I have a talk w an endocrinologist! Don’t want to make it worse than it is. Had hoped I could tolerate peg but…

EPguy profile image
EPguy in reply to ts75

Good idea to discuss with the endo. If that goes ok and PEG is otherwise working for you I think you shouldn't entirely rule it out, as it is a good alternative to anagrelide. Thyroid issues are generally not in the severe adverse auto-immune category that the black box IFN warning addresses.

If you want to take extra care in tracking other autoimmune (A-I) reactions you can see a long list of those I got here:

healthunlocked.com/mpnvoice...

There are various others also.

I had the non-thyroid A-I reaction (the bad kind) to IFN.

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