Pegasys & thyroid

[Beartime]

HiI have been taking Pegasys for 10yrs & recently my thyroid levels have been increasing. I am aware that the treatment can affect the thyroid.

Does anyone have any experience of this? If the treatment is stopped will the thyroid levels rectify or is this now permanent.

I'd love to hear from you.

Cath

[Cakeface]

I ended up with a toxic thyroid, Thyrotoxicosis. I'd only been on Peg 5 months. It was picked up from a blood test at my annual health check at the doctors. I informed haematology and was taken off Peg immediately as my ALT was also found to be very high. At diagnosis my thyroid was extremely hyper then quickly changed to hypo. I'm currently taking thyroxin and levels are nearly back to normal. Hopefully, the thyroxin will be slowly withdrawn soon to see if my thyroid has recovered 🤞 However, the damage can be permanent. I hope you get sorted soon 🙂

[Beartime in reply to Cakeface]

Thank you for your reply.All the best with thyroid recovery.

Can I ask which treatment you went on to after Pegasys.

Take care

[Cakeface in reply to Beartime]

I'm back to venesections 🙄 If I lived in Ireland or Scotland I'd be able to get ruxolitinib but it's not approved in England for PV yet😬

You might be able to stay on Peg if you take thyroxin. You'll need to do a bit of online research and also talk with your consultant. You take care too

[Beartime in reply to Cakeface]

I have ET. I suppose my thought process was, do I need to try alternative treatment & prevent further issues with the thyroid. Ideally I don't want to be taking medication to counteract the side effects of my ET treatment.It looks like the Haematology nurse is going to book an appt so I can discuss this further with the consultant. It is always good to hear from other's experiences & how they managed situations.

Thank you for your help.

Take care

[Cakeface in reply to Beartime]

I agreeI believe that you can have Ruxolitinib for ET. Just do your research and have your Q's & A's ready for your appointment

Good luck 😊

[Mirror368 in reply to Cakeface]

This is the first I have seen thyroid issues mentioned. I have many thyroid nodules and have been on Synthroid for many years. So the medication is taking the place of my thyroid working, My new endocrinologist informed me that is not the current thinking but now I cannot stop taking the medication.

I have been thinking of asking my hematologist about a switch to Pegasys from HU due to headache issues. Think I will definitely need to see an MPN specialist.

I am looking forward to any updates from you.

Many thanks, Eileen

[Cakeface in reply to Mirror368]

I'm sure they'll keep a close eye on your thyroid levels if you can go on Peg with you being on medication already 😊

[Anag in reply to Cakeface]

to have a well functioning thyroid and get off thyroid hormone, You must make sure that selenium iodine and vitamin D are at optimal levels not just within the range! 🙂

[pianolearne]

I developed thyrotoxicosis last summer after 6 months on Pegasys. It's a known risk. My haem consultant had been keen for me to try Peg as she thought it could be a more effective long-term treatment for my ET CALR than Hydroxicarbamide which I had been on for 2 years prior, since diagnosis at age 61. Pegasys certainly was effective on the platelets: for the first time since diagnosis they came down to under 400, but at quite a cost, given the impact of hyperthyroidism. Once the blood test showed the very elevated thyroid levels, I came off Pegasys & have been back on Hydroxi since August last year. Thyroid levels are now within normal range but I am continuing with a low dose of carbimazole (anti-thyroid meds) for the time being and we will review in another 3 months. I was told it can take up to a year to be sure everything is stable thyroid-wise. Sadly the platelet levels are up high again, though falling slowly, so at some point there will have to be a discussion about whether I have another go with Pegasys. Not sure how I feel about that!

[Beartime in reply to pianolearne]

Your reply was very helpful. Thank you.I also have ET with the CALR mutation. I am so pleased that your thyroxine levels have started to level out. It really is a balancing act with the various treatments. Pegasys works really well on my platelet count but sadly depletes my white cell & neutrophil counts, therefore for quite sometime the dosage has been tailored to allow the platelet count to run a bit high & not suppress other the blood counts.

All the best.

Do let me know how things pan out.

Cath

[pianolearne in reply to Beartime]

You are absolutely right that it's a delicate balancing act. I am also prone to neutrophilia and so we have had to go cautiously with increasing the Hydroxi to drag the platelet levels back. My haem consultant pointed out that people who are prone to neutrophilia on Hydroxi tend to show the same response to Pegasys, and so it was for me. I was gutted that the only week that my platelet levels were 'normal' was the week I had to come off Pegasys because of the thyroid issue. My other bugbear with Peg was considerable hair loss and hair-thinning, and that has stopped since going back on Hydroxi. I will update after next review. All best.

[Mirror368]

Please see my reply to Cakeface.

Eileen