Interferon and thyroid

[jodary]

Is anyone on interferon who also has a thyroid condition ? I have been told by my consultant that they would not be happy with me trying interferon as I have an underactive thyroid and am on thyroxine. I am aware that interferon can affect the thyroid and they have to monitor it but if it is already monitored and thyroid hormone replaced am not sure why this is the case.

[Mostew]

Proffeser Harrison told me as thyroid was already underactive it was worth considering. But if thyroid was OK it could cause it to be underactive

I'm not considering it yet but good to have option.

have you seen a consultant for second opinion. ?

[jodary in reply to Mostew]

No not as yet but was interested to know if others had any experience of this. I can take this information to my next visit. Thank you for your reply

[Mustang50]

Hi I have under active thyroid and I’m on Pegasys interferon I have never been told this, it’s interesting as my platlets are in a good place but my symptoms are not always, keep asking them to send me to see a specialist they won’t because my platelets are fine have tried every which way to see a specialist even contracting Professor Harrison’s secretary myself 🙈

[Wyebird in reply to Mustang50]

interesting to see you too are in interferon platelets good but symptoms not.

I still have major fatigue periods when I’ve dived so much I’ve had to go to a and e

[Mustang50 in reply to Wyebird]

So sorry to hear this Wyebird! Problem is whenever I see Haematologist I look so well so no one believes me 🙈

[Wyebird in reply to Mustang50]

I’m lucky my clinic believe me. On Tuesday I for no reason slept about 11 hours with 2 bathroom trips. That’s unheard of as I usually have poor quality sleep. I woke ups Wednesday morning a different person. With a new lease of life. I’m still on this good patch. Wanting to get up and do things hasn’t happened for about 11 months.

[BeckyDing]

Hi

I have just come off interferon as antibodies have been found in my thyroid which has most likely been caused by interferon. I had blood tests as collapsed after having covid and ended up in hospital, still struggling now and the only change in bloods is my thyroid. They don’t think I have long covid but giving me a break from interferon to see whether bloods change and I feel better, I am slowly feeling better but been the worst 4 months health wise of my life! Obviously interferon has helped me a lot over the years and I have been able to have 2 children while taking it so don’t regret going on it but after 14 years my body just can’t tolerate it anymore it seems. I am speaking to an auto immune specialist on Monday which hopefully will shed some more light on what is going on.

I would just get as much facts as possible from your specialist and start a low dose if you do want to go ahead and find out if the medication you are on would counteract any effects of interferon or whether it would stop them working?

[jodary in reply to BeckyDing]

HI. Thanks for replying, if the interferon has caused you to become underactive then the symptoms you would experience would be extremely debilitating as anyone who is hypothyroid would know. Normally thyroxine would be the treatment, my argument is if you are already underactive then it should be relatively simple to treat and not a reason for not being able to start interferon. Hope you feel better and get some answers from auto immune specialist. Are you in UK ?

[BeckyDing in reply to jodary]

me too! My gp doesn’t seem to think I need medication for thyroid even though thyroid UK have said the exact opposite to me when I have sent my test results. I think it can be reversed if caused by interferon itself I think so think they are hoping that, I had milder symptoms before covid but I put it down to peri menopause and kept going so things were definitely going on before then. I was told of it is the cause I can’t go back in interferon so I would have thought if you already have a problem it wouldn’t be recommended as could make your situation worse? I think you can Google side effects from pegulated interferon online and see if it gives you more info, I’m hoping the auto immune specialist can give me more insight re medication. I’ve been doing all sorts to help my thyroid naturally and defo slowly improving but don’t know if as a result of that or because being off the interferon is reversing the damage. Take care and just would recommend writing all your questions down to talk through with your specialist. Take care x

[Wally85]

hi jodary, I have ET and hypothyroidism, and changed from hydroxycarbamide to pegylated interferon four weeks ago. I will ensure the medics include TSH levels in the blood tests for ET reviews.

[jodary in reply to Wally85]

HI,thanks for replying, did you not get on with hydroxycarbomide , how long were you on it for? Thyroid UK are very clear that hypothyroid patients should not be treated solely on TSH levels . I've had a lot of issues with this as I can have in range and dire T3 levels. T3 being the useable form of thyroid hormone. I'm extremely interested to see how you get on are you just on Levo thyroxine or do you take any T3 ?

[Wally85 in reply to jodary]

hi jodary, I was on hydroxycarbamide for 3.5 years, and had anaemia, breathlessness, fatigue and aches and pains throughout that time. My hypothyroidism was picked up as part of various blood tests to rule out hydroxycarbamide being the cause. I take levothyroxine only. Investigations also identified a hiatus hernia and grade B oesophagitis. I’m currently waiting on a biopsy to confirm (likely) coeliac disease.

So far the pegylated interferon has impacted well on platelet levels - down to 375 from 548, but has also decreased HB and HCT further.

I agree with your point that pegylated interferon possibly affecting thyroid function further is covered, as long as TSH levels are obtained as part of the MPN blood tests.

Best wishes

[MNGIRL2019 in reply to Wally85]

what dose are you taking of interferon?

[Wally85 in reply to MNGIRL2019]

currently 45mcg once per week

[MNGIRL2019 in reply to Wally85]

how long did it take to see your numbers coming down? I’m on my second week and no changes so far.

[Wally85 in reply to MNGIRL2019]

hi MNGIRL2019, a couple of weeks, but I believe we all respond individually to treatments, not least because we have our individual health histories and current circumstances. When I was taking hydroxycarbamide, it was about 18 months before my platelets reduced. Best wishes

[MNGIRL2019 in reply to Wally85]

indeed. Thank you for sharing your story.

[WeylandYutani]

Hi Jodary,

I suffer from Hashimoto - found out during the chek-ups regarding interferon; this was in March '21.

I can tell, that interferon definitely affects my thyroid and it's more difficult to find the right dosage (for my thyroid), but it's manageable, when having the right specialist at hands.

Still believe, that interferon was the best choice, blood levels are nearly back to normal and my Besremi dosing is down to 50µ / 4 weeks.

Cheers!

Thomas

[jodary in reply to WeylandYutani]

HI,thanks for replying. So even though you were diagnosis with Hashi, you were still allowed to start interferon? Are you on Levo thyroxine ?

[WeylandYutani in reply to jodary]

Exactly, I'm currently taking 37.5mg (max was 56mg). When it's closely monitored, there should be no problem in taking interferon, even with Hashimoto. I think it's important to check your values in the beginning and when you are getting along with Interferon (and have a stable dosage) then it's not a problem anymore.

At the moment I'm checked every two months.

[SoledadBarcelona]

I am suffering for Hashimoto's without traitment. I help my thyroides with a strict diet, proper exercise and lifestyle. I have been taking Besremi for 15 months.Everything was fine but I started getting up the antibodies. Why? I think it is due to the Covid vaccination.

[SRH55]

Hi,

I’ve been on thyroxine, for an under active thyroid, since 1995. I’ve been on interferon from 2016, until July this year & never had any issues. Good luck.

Shirley

[jodary in reply to SRH55]

Very very interesting. Thank you. Is your thyroid monitored by the gp or the hospital ?

[SRH55 in reply to jodary]

I have a blood test for my thyroid when I see my haematologist, but if there was an issue it would be my GP who would alter the dose. I ask when I see the haematologist, I have been on the same dose for a number of years. My ET has now progressed to Myelofibrosis & I have been taking Ruxolitinib for the last 2 weeks, so it will be interesting to see what happens.

[NCB1983]

I was on levothyroxine for an under active thyroid before I went on interferon. I now take both.

[jodary in reply to NCB1983]

Thank you for this ! Have you been on both for long ?

[NCB1983 in reply to jodary]

Two and a half years now.

[mother2britton]

I am hypothyroid and have been on 125mg of Synthroid for 20 years. I started peg 3 months ago and since that time my TSH has been getting lower (.03). I am still in the process of finding a balance. My last test was .5 on 100mg. My specialist as of now says we keep going with peg.

[Solyesh]

My slightly underactive thyroid was actually found during the routine blood tests my MPN specialist ordered. We first noticed it as I was coming off hydroxyurea - we monitored it for about 3 months as I switched to Peg. The Peg was not affecting the thyroid further so the MPN specialist conferred with my GP and told him that it would be fine to start me on levothyroxine if he deemed it necessary. I have been on Peg now for a year and on levothyroxine for about 6 months with no issues.

[gvibes]

Hi, I was diagnosed with PV 2 years ago and on pegasys for 1.5 years. I had graves disease in 2012 (hyperactive thyroid), ablated the thyroid, and been on levothyroxine since then. In the last year my TSH levels have gone down and my dose of levothyroxine has been lowered. Its quite possible (but not certain) that the pegasys has caused the change in TSH. I think monitoring thyroid function when taking pegasys is important and you can respond to any results you get.

Good luck!