Interferon and Hypothyroidism

[jodary]

I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My consultant now says they need to be under control and as I have declined increasing the HU has mentioned interferon. I have said I will think about it as I have hypothyroidism and she had previously said I couldn’t have interferon, so not sure if she has forgotten she said that. I have seen on here that Professor Harrison had said that having existing hypothyroidism does not mean you can’t have interferon. I know it can affect your thyroid and I know from experience that when my hypothyroidism wasn’t treated properly by Gp I was really unwell. I have no side effects on the current dose of HU and am not sure what I want to do. If anyone knows anything about hypothyroidism they will know that now GPs think it is ok to just test your TSH ,and it’s really not. To explain they have a range of something like 0.5 to 4.5 and if it falls anywhere in that range it is fine. I have given up with them now as it can be a sign of being unwell if your result changes significantly yet remains in their range. What I am worried about is if on interferon and they are monitoring my thyroid and my result changes but is still in their range they will say it’s normal and I won’t be feeling well. And I wont know if it’s the interferon or my thyroid. Sorry about the rant but after being hypothyroid for a long time I have realised that they kept me unwell for many years. Now we can access our NHS records and see our previous blood test results ourselves for many years mine were out of range and marked as no action . I don’t know whether to just stay as I am , as I am ok at the moment .

[WRLM]

I’m in Canada, so this may or may not be helpful to you.

Our system also only allows for TSH testing. The lab is instructed not to test anything further, even if the GP requested it, if the TSH is normal. It’s so frustrating.

I finally ended up at a naturopathic dr and it was determined I actually have a conversation disorder (my body produces the T4, but doesn’t convert it to T3, so my reverse T3 gets super high and binds with whatever T3 I do have, rendering it useless.) I could have never figured this out within our medical system.

I continue to pay out of pocket (partially covered thru my extended health coverage) to monitor my thyroid outside of our medical system.

I am seriously considering participating in an interferon (Besremi) clinical trial. If I do, I plan to make sure my naturopathic dr keeps a close eye on my thyroid, even though I’ll have to pay out of pocket. I’ll speak to the clinical trial Dr, but assuming I won’t be able to get proper testing done thru the trial or our medical system, and I’ll have to pay for it myself.

[Amethist]

indeed thyroid care is a shambles in uk and many other countries. I remember reading a while back that even though the range is .5 to 4.5/5, GP’s typically ignore it until your TSH is over 10. That’s why I have been, successfully, treating my own thyroid issues for many years. Thankfully haven’t needed to see a gp in years for a blood test. I avoid them like the plague.

Maybe look on drugs.com to see what interactions are known with regards to thyroid function/ treatment and both HU and interferon. See if pubmed comes up with anything too.

Are you also on the thyroid group with Health unlocked? Maybe someone there might have additional info?

[KLCTJC]

I started Besremi and it caused hypothyroidism, but I didn’t know it. Any symptom I had I never noticed it. I was always subclinically high. My TSH was always at 5. So, likely already had some hypothyroidism. They didn’t take me off of Besremi. They are just treating it. If you think about it we can live without a thyroid organ if necessary just need to replace the hormone. It just takes time. I think I see a difference now that I am on 100mcg of levothyroxine, but I will know in another month. But Besremi has lowered my labs to pretty much normal. For me it was worth it to stay on it. May not be that for others, but I didn’t feel as bad as some. To be honest I feel great. I think if you wanted to try INF you could but you may need to adjust your thyroid medication. Good luck!

[jodary in reply to KLCTJC]

Thank you. What I am worried about is my tsh changing if I start interferon and it being ignored by them. I feel ok at the moment, if I feel unwell once starting Interferon as people say you can , and they only test tsh the range can be from 0.5 to 5. Mine is currently 0.5 , even if it raised to 5 they say it’s in range . I need it to remain low as I feel well at this. I won’t know if it’s the interferon or my thyroid, I had a tsh of over 8 a few years ago and was very unwell so everyone’s needs are different. I don’t get why thyroid patients are treated as we are .

[Solyesh]

I had subclinical hypothyroidism for years and did not know it - my values were always around the 6-7.5 range but never hit 10 so it was never treated. In the blood work up to switching to Peg my MPN specialist and GP ordered every thyroid and liver function test possible. When the TSH came back at 7 again we discussed it and agree dit was fine for me to go on Peg. After the first 60 days on Peg it had risen to 7.7 and they both agreed to start me on levothyroxine. I take 50mcg.

[Mostew]

I asked again last Friday about interferon and thyroid . They confirmed once you have underactive thyroid it won't make any difference. Its only if thyroid is normal it might be a problem

[jodary in reply to Mostew]

Thanks for replying, I’m worried about it still , I’ve seen on my nhs records that for years my blood tests have been out of range and they have put satisfactory. I was quite unwell for some years and I can now see why . So if it’s affected by interferon where will I be ? I really don’t know what to do ,

[Mostew]

I can see why you are worried . It’s all such an unknown..

You have to be comfortable (reasonably) . Talk it over some more with Consultant who listens to your worries.

Not easy. I’m staying on Hydroxy for now…

Good luck

[jodary in reply to Mostew]

My consultant is not easy to talk to. In the past she has told me never to mention my thyroid again . I was prepared to stay on the low dose of hydroxy but am not prepared to start increasing it . I have slight hair thinning but no other side effects on that dose but alive read you can get hair thinning on interferon. I’ve been able to lead a normal life and don’t want to rock the boat . It’s a dilemma.