Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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Hypothyroidism

sofimoore
sofimoore
hi all.
I posted a while back that I still felt crummy post treatment (I was on 8 weeks sofosbuvir/ledipasvir plus ribavirin). Just found out that I have hypothyroidism--Hoshimoto's actually. It's auto immune. My immune system is attacking my thyroid. And yes, the meds probably caused it. I was checked by the trial people for thyroid disorders before beginning the drugs and all was normal. It's a mixed bag. I am happy to be SVR 12 (just had blood drawn for 24 and will know soon) but unhappy to have hypothyroidism. But also relieved to find out that I am not crazy and something is wrong physically--something treatable--and now I can hopefully, finally, feel better.

I am sharing to keep you all informed of the sides of this combo. It was brutal for me. (I was bed ridden and could not walk due to pain--unexplained growths under the skin on my legs, and I was insane--depressed, paranoid, anxiety. I have always had good physical and mental health prior to the treatment.) I'm not saying don't take the drugs. Just know what could happen. I was told mild to no side effects and my symptoms were dismissed by the study people until they could no longer deny it. I just want everyone to be informed and realize there is a cost other than financial and that it isn't side effect free like everyone wants to believe. (I have heard without ribavirin has way less sides, but more relapses).
Good luck to all,
Sofi
Trissa01
Trissa01
Thank you for participating in a study that can benefit all victims.
Sorry the sides were unkind to you. We appreciate that you are sharing about this on the forum.
Many of us are dealing with auto immune disorders since treatment. My thyroid started crapping out before I was dx'd hcv.

The great news is svr & I'm pretty sure your 24 wk draw will read the same.
NZmumof3
NZmumof3
ah, bugger. I can sympathize with your anxiety and depression issues, I've struggled a bit with them since my treatment of just interferon and riba ended in August 2012. It is getting better but it has taken some time and physical exercise has been very helpful but didn't really start working for me until about 5 or 6 months post treatment. Thank you for your honesty sofi
deleted_user
deleted_user
Sofi...hello to you. I was ALWAYS advocated honesty about the outcome of the treatment. It is the greatest warning to many people who comes and read your problems, as PHARMA will not report case like this otherwise could have run in to issues with approval. We were suspecting it no way any pill just come with out side effects, and you are not the first one who reported issues, people even got hospitalized on Gilead made drugs. Now the warning at least goes out, as it was taken a couple of years before FDA put a Black label warning on Incivek. So time will tell when people whom are not handpicked "cherry-picked" will go on the meds and the real issues and problems to fallow. Your contribution is real valued here for many who wanting to start their treatments. So hopefully you get the thyroid under control, and hope for he best possible outcome. Come visit us more often , at least we know all the suffering you go trough, and if nothing else, we can give you some mental support. Your honesty COUNT unmeasurably.
deleted_user
deleted_user
Sofi.... Congratulations on SVR!!! I'm sorry the thyroid issue popped up on you. Hopefully they have you on thyroid med. My thyroid crapped out too but the thyroid meds are very inexpensive, I've suffered no side effects from them and they deal with it really well. I hope you experience the same improvement with meds.
TulsaGal
TulsaGal
Thanks for the information. I hope that they get your thyroid stabilized.
jbnewport
jbnewport
I agree with others and appreciate your honesty about that treatment. I don't blame you for being upset. Thyroid isn't always easy to regulate and get right, and can affect so much. They (the doctors) always seem to downplay the side effects, otherwise, how would they stay in business. I do hope that you can get the thyroid under control quickly.
Let us know if the thyroid meds help you feel better. Also, the fact that you actually felt crazy with the depression and anxiety is sad for anyone to go through. I would hate to think of what could happen to someone who already had issues and more fragile.
deleted_user
deleted_user
Same here Trissa! Hep is the disease that just keeps on giving, Autoimmune stuff, Cryo, Thyroid, the list is long for some of us. Even when tx is successful, these other things don't just go away. But, considering how long I had the virus, I'm grateful to still be here, that my liver isn't in too bad of shape and will just deal w/ the other stuff as well as I can. Don't mean to be a downer but its reality. It could be a lot worse though and I constantly remind myself of that fact.
Cloudguard
Cloudguard
after a year of peg and rib my thyroid was toast, however I am SVR and it's not the worst side effect that I carry.
kcaseytn
kcaseytn
I'm so sorry to hear you had to endure all of that - I was in the same trial with out RIBA for 24 weeks - I developed problems before Dx and seem to still have them - and I'm playing detective to figure out additional problems from Tx - I think HCV + Tx (as Neelytee said) is the gift that keeps giving - I hope things get better w time - that's what I'm hoping for
kcaseytn
kcaseytn
Oh yeah - my gift from Triple was psoriasis - no fun at all - and I think there is a good chance I have psoriatic arthritis - auto immune not easily managed - especially when my last rheumatologist says he won't prescribe any immunosuppressive drugs - he feels the only reason I'm undetectable is my immune system is suspressing HCV (and I found articles that support his beliefs) - my trial Hepatologist disagrees
Cloudguard
Cloudguard
Yes I have periodic joint problems that persist for long periods of time and then disappear. Then back again. periods of depression that come and go. How ever my liver is almost perfect. This after having Hep C 1a for probably 40 years, I have psoriasis in areas and oily skin in others.
Brigid13
Brigid13
Sofi,

Thank you for your honesty. I hope you find something to bring your thyroid back in balance.
I was afraid this might be the case -- the "no sides" wonder drugs aren't so wonderful after all.
sofimoore
sofimoore
Thank you all so much. Sounds like all hep c treatments have a physical cost or "gift" as you say. I also have itchy dry skin but that is part of hypothyroidism. I started the medicine for it two days ago so I am hoping to feel better soon. Thank you all, really. It means a lot.
WarriorGal
WarriorGal
I want to echo others in congratulating on being SVR and for taking the time to come and tell us about this. I am sorry you had such a hard time with tx and were left with this.

I know you said your thyroid was tested before tx, but autoimmune diseases are related to HCV itself. I know because I have had TWO long before tx. I have also been tested for thyroid and have been told those test results fluctuate.

We all do tx knowing there are side effects and risks...but there is also risk of not treating...

Hopefully the milder non-riba, non-I txs will reduce or eliminate all of these issues and help more of us be SVR.
sofimoore
sofimoore
I was tested by the study people 2 weeks before starting treatment and my TSH was 1.82 which is in the perfect range for women. The meds caused a "self resolving" auto immune response as well and it finally went away 8 weeks post EOT. My immune system did not like these meds. But now, I am trying to let go and heal and be grateful. I am SVR 24. I think I need to celebrate.