pegalated interferon and thyroid

[SuET2017]

hi all,

I’ve been on interferon 45 weekly for about two years now, and have had an under active thyroid for about 10 years, treated and maintained successfully with thyroxine

. About a month ago I noticed my thyroid was enlarged so went to GP and had a scan and blood tests. The scan is not showing anything untoward,. My TSH is low and antibodies high (t4 in range).

My concern is that it’s the interferon as I know thyroiditis can be a side effect. Has anyone had this issue and what was your experience - symptoms, treatment etc.?

My GP is not great at responding or having knowledge on MPNs and treatment (I informed them about the possibility of the interferon link). And I do have an appointment with my haematologist next week. But I want to be as informed as possible as, from past experience, it can become a game of GP vs Haematology ping pong for me.

Thanks

[ainslie]

Interferons are well known to affect thyroid for some, although it’s very treatable I think.It may be helpful to look or search or post on the thyroid forum here on Healthunblocked or elsewhere also.

[hunter5582]

Ainslie is correct that Pegasys can cause thyroid issues. It can be either hyper or hypothyroidism. This is well documented. online.epocrates.com/drugs/...

drugs.com/pro/pegasys.html

Expecting a GP to know about MPNs is a bit like expecting to get blood from a turnip. MPNs are just too rare. Very few know much about it. The thing to look for is for the GP to listen to you and help you access the care you need. The hematologist should be quite aware of the IFN adverse effects. Suggest you encourage that doc to play Pickleball rather than Patientpong. The latter is not a fun game.

hope you get this sorted ASAP. All the best.

[SuET2017 in reply to hunter5582]

Well the turnip comment has me chuckling, thank you. And yes, my GP has no idea at all, and in fact missed the diagnosis (ignored high potassium readings - false reading i know, but he didn’t know that!). Hopefully, my haematologist can address this. Also not a MPN specialist so perhaps it’s time to have that input and ask for a second opinion. Interferon has been so good for me with very few side effects, after trying hydroxy and Anagrelide with horrible side effects. What next? Thanks hunter and I’ll suggest pickleball (I had to Google it, it is a thing!), this is a bit of a pickle!

[hunter5582 in reply to SuET2017]

If you have not consulted a MPN Specialist yet, it is time for a second opinion. This is the best way to ensure optimal MPN care. I have two hematologists. My wonderful local doc, who is not by his own definition a MPN Specialist, welcomes MPN-expert input. I see the MPN Specialist 2x/year. That doc provides input into my care plan. This works great.

I am planning to try Pickleball. It looks like fun. Much better than Patientpong.

[SuET2017]

Yes, I need to have that informed input I think. And I have Claire Harrison and team on my doorstep so hopefully I can get a referral there? Patientpong 😂 I might use that exact word at my appointment.

[Hopetohelp]

I’m afraid I can’t be of any help but thought your post was very interesting. Hope your appointment goes well and please let us know how you get on