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823964 tn?1238826899

Interferon and Graves Eye Disease

I've been seeing a reputable hepitologist for HCV-genotype 2 induced stage 4 liver disease with mild portal hypertensive gastropathy, and excellent liver synthetic function. He is reluctant to put me on interferon/ribavirin therapy which would last 48 weeks, because of the risk of blindness from Graves Eye Disease. Although I have been euthyroid for four years, I was treated for hyperthyroidism from 2000-2002 with atenolol, tapizole and PTU, and currently have clinical evidence of mild Graves eye disease in one eye, demonstrated by lid retraction, and slight limitation of upward and outward gaze. He feels that Graves eye disease can be devastating in this setting and may not improve following withdrawal of therapy and councils me to wait and see if my liver stabilizes and new treatments become available. I am a 62 year old female, otherwise in good health, but had been drinking up until a year ago, so my liver has had that much time to stabilize from lab results that were taken at that time and every three months since. I was cleared by the ophthalmologist for interferon therapy, my TSH and T4 are normal, and the endocrinologist says she will monitor me. My hepititologist says he will leave the decision up to me, but says that if he were I, he wouldn't risk going on interferon, at least, not at this time. I'd like to know what you think about this issue, and/or, if you can advise me on where I can find, and/or who might be able to answer, detailed questions about the risk of blindness due to interferon therapy. Thank-you.
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Avatar universal
was diagnosed with Graves some years ago and had the radioiodine ablation at that time.  I also had some eye problems resultng in a need for surgery to remove scarring from my retina.  I still have dry eye but none of the other problems of severe eye disease which affects about 30% of us I am told.  The eye disease and the hyperthyroidism both come from Graves but correcting one does not necessarily correct the other.  In fact, getting the ablation may eventually stabilize the hyperthyroidism as hypothyroidism maintained with synthroid but I read could exacerrbate the thyroid eye disease (so far that hasn't happened to me thank goodness).  So the eye problems are epiphenomenal with the thyroid disease.

Thyroid disorder is one of a number of autoimmune disorders which is thought to either be stimulated by or exacerrbated by or activated by a virus.  It has been shown that HepC is a common instigator of such autoimmune disorders but the mechanism behind it is not so clear.  I don't believe having these manifestations necessarily means that you have autoimmune hepatitis as well as the direct infection but it is certainly a possibility.  I hope that is not necessarily an indication as I am just treating, and I think successfully, the primary infection and I want this whole affair to be over with soon. Interestingly, in reading the article below I find that you can have hepc residing in the salivary glands.  I actually had to have one of my glands removed due to an impacted stone and have had dry mouth as well as dry eye for years.  

I read also that those with Graves should not treat the primary HepC infection with interferon as that can make matters much worse.  

http://hepatitiscnewdrugs.blogspot.com/2011/03/autoimmune-diseases-co-existing-with.html
Helpful - 0
Avatar universal
Are the diseases 1. graves, 2. hyperthyroid, 3. hep c., 4. related to each other? Can you have one without the other? Does having one cause a person to develop another?
I have been advised by many great physicians but never really given a similar response from anyone or from any of the docs.
Helpful - 0
233616 tn?1312787196
You proved my important point in spades....

often docs take the less than 1% chance and expand it as if it was the sword hanging over everyone for certain.

I have no idea why they do this unless its to cover themselves legally..so that if you insist on tx after being told they are off the hook.

This reminds me of my recent conversations with docs in which they were siting a study of one end stage alcoholics reaction to a drug...when in fact less than 1 in 300,000  would have that type reaction. Obviously someone in end stage is more at risk for whatever potential problems are there....but it's not every patient who has equal exposure to severe sides.

Since you are stage 4-5 though, he may be reluctant to treat you based on that alone, and I think I'd be more inclined at that stage to maybe wait, since its only a year hopefully..or 2..and you could cut your tx time down doing less liver damage that way...
but waiting has it's issues also.

In either case, it's kinds between a rock and a hard place.
The only up side to having the transplant first, should that need to be your case, is that the transplant is going to be healthy tissue, not a big blob of cirrohsis....so the chance it will tolerate the treatment and clear easier is greater than the chance an old fibrotic liver will.

mb
Helpful - 0
823964 tn?1238826899
So glad to hear you're so close to the end, or maybe you're already there by now :o

I've been doing some research on Grave's ophthaomopathy in medical journals. So, far I have found only one case study in which the disease was exacerbated by interferon, and in that article, it was noted as being the only known case, and there was no blindness involved. I found other case studies in which the disease occurred for the first time while using interferon, but that is not my scenario. Since I quit using Tapizole about seven years ago I think I would fit into the "exacerbated" category. (BTW, this disease can manifest along with HYPOthyroidism as well.) In another case, a woman developed the disease 6 months after the administration of interferon and was subsequently treated with a medication called lanreotide for a year and a half, when her symptoms resolved.

This information has led me to feel less anxious about the possibility of developing the eye disease. However, I just received my new lab results and they are slightly improved over the ones I had done last January, so, to me, it seems that my stage 4-A5 liver disease may be stabilizing, and if this continues to be the case for the next couple of years, I may hang in there for polymerase inhibitor R7128, which I think, has finally entered clinical trials for genotype 2, so that my term of therapy will be shortened.

I am less interested in the transplant idea ever since I discovered that, whether cloned or from a donner, when the new liver becomes infected with HCV, the virus will most likely move much faster than before to compromise the new liver.

Your idea of removing the thyroid is something that I need to run past a specialist, which is another path I plan to explore. I will also look for some articles on that.

Thanks so much for your helpful feedback, and I'm glad that everything worked out for your son.

ArtieChoke
Helpful - 0
233616 tn?1312787196
Hey thanks...getting close now...starting the taper this friday....8 more weeks of less and less...sounds like heaven to me!!!

OK, using the site you gave lets think this thru...

they list 3 possible cures for graves.
the one you are on Tapazole has the greatest risk of the return of the disease.

The fact that you cannot reverse some eye damage does not mean that absent a thyroid is should get worse, unless in rare cases it were complicated by other things such as diebetes...or unless they did not correct the pressure with an orbital procedure when indicated.

I still think you should talk this over with a qualified endocrinologist and surgeon because they aren't being specific as to what may continue minus the thyroid or why.

Were you to end up with burst vesseled that were not sealed with laser surgery, or a partially detached retina not lasered back down, then yeah, sure damage could continue...but it would not be a result of the graves proper were the thyroid gone, it would be the result of not having dealt with the eye in a timely matter.

As an example, my son had laser surgery THE SAME DAY he had an eye injury because I knew waiting could cost him his sight. At the very least he would have had to lay on his stomach for 6 months, head down the whole time....to save the eye...that's IF it had not been repaired the day it was damaged.

Yet a lot of damage occurs because folks first see their gp..and they shrug and finally get them to a specialist weeks latter.  Where the eye is concerns hours not days should be your mantra. The little blow outs that diebetics have only cause blindness if not treated promptly.

again, I'm no expert here...but I'd call that clinic and ask them what exactly will continue to progress
AND WHY
AND to how many people does that happen.  If 1 or 2 % continue to have problems that is not a signal not to have the procedure....that means the other 98% had a halt in their disease progression.
It seems somewhere in the recesses of things read 30 years ago there were some case where some progression continued...but if memory serves me, these were cases where the thyroid was only partially removed....even some remaining tissue can regenerate or cause an overproduction of hormone.

mb
Helpful - 0
173975 tn?1216257775
artiechoke,

I had a vision problem around week 60 of TX and had a very scary episode where I couldn't see for about half an hour.

Went to an opthamologist - he diagnosed cotton wool spots - luckily for me, the problem didn't recur and I was able to finish TX but that one incident almost made me quit.

BOL.
Helpful - 0
823964 tn?1238826899
Hi merryBe,

I figure it must be “party time” for you just about now, so first I want to say Congratulations for the eighty weeks you put in. You’ve certainly paid your dues,
and I want to thank you for your knowledgeable advice.

Your comments were very helpful, and I’ve since looked into them. This is what I’ve found. Unfortunately, “Treatment of the thyroid and or thyroid removal does not always stop the progression of the eye problems.”  Angeles Vision Clinic

So far, most, or all of the clinical trials for new HCV drugs have been for genotype 1, but my doctor mentioned recently that a trial for polymerase inhibitors may be coming soon for genotype 2 patients. (I need to find out more about that, because I did get the impression from him that less interferon would be less of a threat to my eye.)

If I can wait 3 years, (and that is the question), why not wait a little longer for the bone marrow stem cell technology, so I can grow my own new liver? Even though it will also become infected, it will take at least 25 years and by then I’ll probably be dead anyway.

Thanks again,

ArtieChoke

Helpful - 0
547836 tn?1302832832
not sure about the blindness part but:

i'm geno1 have been on therapy for 41 weeks already, and my clinic wanted to pull me off tx bc they're scared the Interferon/ Riba will drag my TSH to below 0.02.  i'm already at 0.02 right now and i started off with a normal TSH before tx.  so right now, i'm also seeing an Endocrinologist, he has put me on Methimazole, and i am also currently taking Inderal beta blocker for my fast heart rate.  hopefully these drugs will help me through the next 7 weeks.  i really want to finish treating and go as planned.  but i'm worried for my thyroid at the same time, not sure if antibody is (+) for Graves disease, but worried that this treatment might cause permanent damage to my thyroid.
Helpful - 0
626749 tn?1256515702
Could opt for a second opinion from one of the big name hepatologist at a teaching hospital. Some are very aggressive with difficult to treat patients. And maybe one from an endocrinologist well versed in ifn induced autoimmune disease... couldn't hurt.

There does not seem to be a real good choice here...
Even though our genotype2 is considered east to treat, most current and in the near future tx include ifn. With no ifn, this puts you in a very difficult to treat group.
One possibility, you could wait for possible non ifn tx... This might be 5-10 years away or more.

Or just a laymen guess what a creative Hepatologist might come up with sooner, maybe. Possibly once both the PI drugs get approved in 1-3 years, your Dr might try an off label  tx with both the Polymerase Inhibitor and Protease Inhibitor together, plus riba and or maybe alina and no ifn ... iirr, I read something about a tx like that.

So there are possibilities in the future. Wish I had more answers for you.
Live a healthy life style to prolong your liver health and maybe get some other expert Hepatologist opinions.
Good luck, my hopes are with you.

apache
Helpful - 0
233616 tn?1312787196
I can see why no one has tacked an answer for you...it's a really tough connundrum...

it is true that interferon can induce Graves and therefore Grave's realated blindness.

Since you already have some damage, I'm sure the doctor is weighing the existing damage into his equation....and I'm sure it's a hard thought to have....do I treat to save a liver when I may cause blindness. Can't blame him for not wanting him to do that to you.

However, at stage 4 that doesn't leave you many options. New drugs like teleprevir and bocevar are supposed to get FDA approval soon...soon being 2011-12.
At that point you could have a shorter treatment perhaps, and a reduced amount of interferon certainly.

However that's still a long wait to give to a stage 4 person.

If it were me...and I know right now some will think this a radical approach, but just saying, if it were me, I think I'd ask to have my thyroid removed or irradiated,
You can easily live without this gland, and yes you would have to be on synthroid then, the opposite of the drugs you were on for graves, as no thyroid functions makes you hypo.  Yet as long as you would take this drug your life could go on as normal.
It's not an expensive drug, has no side effects, it's just the actual hormone that gland normally makes.

By removing or nullifying the gland prior to treatment you would effectively remove any chance of developing any more Graves, thus saving your eyes from further damage via the INF induced hormonal storm.
Then you could proceed with tx. for your liver in a timely manner, say maybe in 2-3-4 months or as soon as they feel that they have dialed in and stabilized the right synthroid dosage for you.

I know this idea may seem radical to some, but it makes infinite sense if you want to save the eyes AND the Liver.  Even if your liver did fail, and you were foryunate enough to get a transplant, you would still have to treat for the HCV, which might still include INF in the SOC...unless another 10 yrs has gone by, in which case much will have changed. But in the forseeable future, say 3-4 years I think INF will still be involved in SOC tx.

So there it is....there's no harm in running it by your doc, they remove thyroids all the time, for far less serious reasons than yours...so it shouldn't be too hard to sell.
best to you.

maryB
Helpful - 0
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