Interferon Damaging the Thyroid

Does anyone know anything about this?

I was very relieved to get my UnD...but hearing that my thyroid is being damaged by the Interferon and that it actually may need to be removed has me a bit freaked (as you can imagine).

Does anybody know anything about the thyroid at all? What this might be about? What the thyroid does etc etc.

I am googling it of course but think if anyone else has had any thyroid issues - it would be more helpful to me to hear what you have to say.

It's ALWAYS something = get the good news with the bad and keep on fighting that fight.

[can-do-man]

Try here deb...

http://janis7hepc.com/thyroid.htm

[NYgirl]

Thank you my friend.

I'm sure SOMEBODY else must have gone through this but so far - nada.

It had better NOT make me gain weight I tell you that much!  ;-)

[sailinlady]

Dang Deb, what next???  That's the first I have heard of a thyroid problem.  Let us know what you find out.  I do know there are drugs for thyroid.  Just what you need, more meds! Guess nothing is easy.  Seems we are being tested over & over.

Congrats again on being UNDECTABLE, didn't I tell you so.......
:)))

[woodbeegood]

congrats on the undie-i know how bad you were sweating that one. my thryoid went haywire around week 28 or so. i went hypo-my TSH was rising-they started me on synthroid it's alittle pill i take once a day-i was amazed at the difference in how much better i felt even still on tx. it did take about a year off tx for everything to stabilize and not have to keep messing with the dosages (adjusting up every other month or so) i don't know much about hyperthyroid other than it is the opposite of hypo and your body produces to much TSH(very low #'s)-there is a thryoid forum on this site that has a dr that answers questions. you will probably need to see an endocrinologist (sp) to get the right answers and tx for thyroid. hope this helps-hang in there & take care

[MrsOckert]

removed????  Did your Dr tell you it might need to be removed?

Having thyroid problems develop on TX is as common as anemia.

Imagine your thyroid to your body as the gas pedal to your car.

I don't know how they can know it's dying while your still on TX.

In many cases thyroid problems will clear up after TX, but like anything else in some cases it won't.

BTW, Congrats on the UN.  Keep us informed about what the dr says about your thyroid.  And see my post in the next thread down about how to take the meds.

[can-do-man]

Heard blowing your thyroid is not that uncommon on tx. You will most likely have to stay on meds for that from now on.

P.S. Been worried you did have a pcr and NOT a brainwave test right?  Might want to check with your Doctor and make sure when he said you were UD.

[NYgirl]

Thank you so much for that info!  He said oddly he thinks I'm getting HYPER instead of HYPO but I refuse to believe that - reading the symptoms...there is NO WAY you would know on tx as it's ALL OF THE SX!  ;-)

As long as I can "just take a little pill" I won't worry much. It's just when he said something about REMOVING IT I went duh huh what duh do?????

The symptoms look like this - is this NOT all the sides of treatment (except inability to lose weight that is ;-)

SYMPTOMS OF HYPOTHYROIDISM1 SYMPTOMS OF HYPERTHYROIDISM2

SUBCLINICAL:

[amommy]

I agree with the others.  Thyroid problems both hypo and hyper are VERY common on tx.  Your blood test results should yield a lot more information. Thyroid issues are easily remedied with meds, and often resolve once tx is over!  I hope it turns out to be no big deal for you.  Sometimes it seems like things are never going to end! Keep us posted.  I believe you could start with a visit to your primary, and if things get more difficult to deal with, they could send you to an endocrinologist!
Good luck :)

[woodbeegood]

my GI referred me to an endocrinologist(sp) they specialize in things like thyroid & diabetes etc. would be best to see if you can get into one rather than rely on primary care for this (at least until you get it regulated either way) i think removal is way extreme at this point-usually they shoot it with radiation and kill it(obviously not med terminology there)-to correct extreme situations of hyper-then you go hypo and they treat w/synthroid. symptoms of hypo are similar to hyper so without knowing your #'s it's really hard to say-especially while on tx.

[NYgirl]

hahaha I am not letting them "shoot" anything!!!!!!!!!  ;-)

I feel better - he had me over reacting like a crazy loon (nothing new) but why he even SAID that Lord knows!

As soon as everyone here goes down for lunch I'll call the primary and find out if she wants me to go to an Endo or to her. I hate to "waste" a doctor visit going to her just to get referred - more time passes for nothing but it's the game most of them play.

$$$$$ is the name of that game I think...I hope I can get lucky.

Still waiting for them to fax me the test results from last nights phone call - don't they know I am standing here drooling with my tongue hanging out?

Thanks for your help so very much

[NYgirl]

The incidence of antithyroid antibodies and thyroid dysfunction is enhanced by interferon alfa treatment. Thyroid dysfunction is reversible only in a minority of patients following discontinuation of interferon alfa treatment.

BLAH more fighting now!

[woodbeegood]

lol-can't say as i blame ya there. i don't know what it is about some drs that do that to you-go all extreme-drives me nuts!

[friole]

Deb -- a big congrats on your undetectible.  I was crossing my fingers -- those last 400 sure were tough ones.

Seems like when I first started posting in about May there were some really good threads on thyroid function.  There were several members that had thyroid problems that cropped up during tx.  Try going thru the archives for thyroid topics, Deb.  I am sorry, but it does explain some of the way you feel.  Since you were thin before, could you have been borderline hypo before tx?  To me this is one of the worse side effects of tx.  I am sorry it happened to you
Kathy

[sunspot]

I am so relieved you are ND. I've been on edge all week for your results.
Stay the course and slay the dragon.

Dana

[cuteus]

the good news/bad news cliche at work!
here is a link to NY thyroid center
http://cpmcnet.columbia.edu/dept/thyroid/
good luck!

[Forseegood]

My older brother (he's much older, he's now 72, remember my dad is 98, this brother is from his first wife who is not my mother. My dad was married 25 years to her and 53 years to my my mother....YIKES!)

Anyway, he had hyper-active thyroid, he got so weak he could hardly walk accross the room, what they did was take out his thyroid (I guess they radiate it off? not sure, guess you better search-engien it) and then put him on thyroid drugs that duplicate the hormones...that was kind of a process until they found the right amount for him, and I'm not sure but they still might have to tweak it now and then...positive take away from all of this is he's as good as new now and it really didn't take that long...he's thankful he had one of the only glandular conditions that they can actually "do" something about he said...I know it's just anecdotal but I hope this helps...

here's hoping you get better soon....

[GoofyDad]

Even if you do go down the road of Forsee's bro, I hear it's not that bad. In fact, a lot of famous people have had it, and you might never know. Remember the tranny dude from Rocky Horror? See?

Plan on a scarf to cover the adam's apple and weekly facial wxings, and no one will ever know....

[NYgirl]

My TSH is LOW at .01 (regular is .049 - 4.70) it's almost as if they are non-existant.

The TOTAL T4 is 10 (regular is 4.50 - 12.00) so that looks fine.

Does anybody UNDERSTAND the difference of TSH vs T4s and T3s?

I read it but of course I'm not too bright.

I believe that means my thyroid is HYPERactive like the doctor had said last night in total confusion like he was mystified (he is a GI) Only I am not losing weight or anything - I don't eat all that much (except I thought I wasn't losing anymore because of the ice cream LOL)

Does anybody understand this stuff?

PS IT WAS GREAT TO SEE MY REPORT <50 HCV RNA ,<1.70 HCV RNA QN PCR

I just wish the paper just said in big bold letters UNDETECTIBLE - that would have been cool LOL.

FINALLY

[Forseegood]

hi, ole Goof and I are of the school that it's better to laugh then to cry...I know you are too...but he's right, (if you do have to go this route) it wasn't that bad, you know me, I grilled him on it...and it didnt take that long at all till he was really well, he said it was so fast it surprised him...so yeah, definitely go to a good endo guy and see what's up...my girlfriend (I know some people are thinking, how many friends you got? WHATEVER!) had to have hers taken out because of the treatment and she's fine now, busy with her life...forgot about her..ha ha! she said getting clear of the virus was well worth it to her...

anyway, hope you get some answers soon! Guess old Ringo was right when he said "you know it don't come easy"...

[Forseegood]

"hoarseness," "gynecomasita in males" ???? what the Sam Hill is that??? Maybe that's what Goof's got (something has got to account for it doncha think??) and he's trying to throw us off the trail with all this Rocky Horror business...those NoCal guys are a wily bunch...

FlGuy: yeah, my God! can you believe it?? guess he figures he had to "spread the good fortune" to a few women...  I figure I served my time with 4 years being married! ha!

Please no hate mail sports fans! I'm just kiddin! Love the institution of marriage! (if only they could find a way where you don't see the same guy in your kitchen, making coffee in his bathrobe, every morning, day after day, after day.....) naaaah, who else would put up with me!

[woodbeegood]

yep you are hyper-check out the thryoid forum here @ medhelp there are lotsa folks that are hyper and there are meds you can take to fix it-you might even be one of the lucky ones that only have a temp effect while on tx

[MissMiss]

Just a thought.  It may bounce back on its own.  Mine did.  That doesn't mean it won't happen to me again but the second blood test a few weeks later showed all was normal.  Since you aren't losing any more weight, maybe you will bounce back.  Course, you may not have any more weight to loose either. lol

Just hoping for you.

missmiss

[miss moneypenny]

hi nygirl,

brilliant news on the undetectable - that is well deserved, but the thyroid is a bit uncalled for, I know exactly what you mean about the good news bad news, seems to be the story of my life too!!!!! Don't have any experience of thyroid, so I am afraid I cannot offer any advice there, but just wanted to offer some support. you seem so strong and positive so I am certain that you will deal with whatever your thyroid may or may not throw at you.

Best of luck,

x

[NYgirl]

You said  what they did was take out his thyroid (I guess they radiate it off? not sure, guess you better search-engien it)

NOW I know why the doctor said what he said about taking it out - I guess it's harder to make it stop OVERworking than UNDERworking which you can supplement with medications!


Man I do NOT want to have an operation like that - it had better resolve itself (even though I read it very rarely happens after treatment we can see above it DOES happen).

I mean how do you go through your life without such an important thing like that it seems to run everything?

Oh God now I am scared. That IS what he had said about taking it out and radiating and all that - exactly.

Made doc appt for Thursday afternoon I know she is just going to refer me to an Endo doctor so I am taking Friday off - I'll get in there one way or another on that day if I have to sit there all day long. This is scary!

[Forseegood]

Please, please, please don't freak out over something some putz like me says...you just wanted some takes from people about what they know of this so I thought I'd share....maybe I should learn to keep my big pie hole shut sometimes! ha ha! Remembering correctly they gave him something to take orally that took it out, but he said it wasn't any big deal, the thought of it was worse...he said it wasn't particularly painful or anything like that....and yeah, at least they can do something about this, and they can't always about other organs and glands...

He is completely fine now, and he was fine in such a short time! He's like 73 now and he goes to Europe with his wife recently....flies into Long Beach to see my parents and stay there....but he get's a big itch to drive home instead....so he takes off "that night" to make a 5-6 hour drive to Yosemitie (where he lives) cause he says he wants to sleep in his "own bed." Believe me, I sure don't have that kind of energy, I don't know many people who do, so he is completely okay now...physically that is! ha ha!

So remember, we all have different stories and we give them, maybe much too freely at times...that doesn't necessarily mean that what anybody says is going to be YOUR experience...just get some answers and go from there, like you've been doing, youre going to be okay! try to be calm and take one step after the other, know that's easy for me to say but it's still the best way to go!!!

[NYgirl]

I just thought there would be a magic pill...but the doctor DID mention what you said.

I'm sure it will be fine in the end - I just had better not have to DIET now because man oh MAN I am so used to eating what I WANT that I don't think I could deal with it!  Not eating is no longer part of my lifestyle ;-)

Don't worry I'm just freaking out today - too many highs and lows in one day for me.  Now I need to win the lotto to level it all off.

[FlGuy]

Married for 78 years!!! God Bless that man.  I've been married for a quarter of that and it feels like twice that number.  Hope you have those longevity genes too.

[PKCO]

http://jcem.endojournals.org/cgi/content/full/89/8/3656

[dyce]

Good morning, at janis and friends under the the (other health concerns) messages is a good article on interferon related thyroid diseases. Have a good one.

Dyce

[dammitjanet]

Hi Deb.  Just read about your UnD.  Fabulous news!!!  I knew you would do it, through sheer determination, if nothing else!  Hope you get the thyroid issue resolved as well.  Wishing you all the best.  DJ

[kapetee]

I developed serious thyroid issues around the 30th week.  I got so sick that I collapsed in my kitchen and could not walk.  My skin was literally peeling off the bottom of my feet.  My skin felt like sandpaper.  I had headaches, etc.  I was told that the interferon can aggravate and underlying thyroid condition, which I did not know I had.  I was also told that thyroid problems can be hereditary.  It has taken the drs. 6 months to get my tsh back to normal. It is probably permanent, and I may have to get mine out,  I would almost go as far as to say this thyroid crash was worse than the tx sides(although this would classify as one!)

[carpedi]

As others have said, thyroid problems are common on tx. In my case I was diagnosed as hyper, and then a few weeks later it swung to hypo - again, a not an unheard of condition. This yo-yo stuff was extremely confusing and I had every symptom listed at some time during the months before I stabilized on the hypo side. Before you let anybody "yank" anything, you might want to see and endocrinologist and see what he/she thinks. Autoimmune responses are very common on tx. There is a predictive test for that and as I remember the norm is somewhere in the low double digits and mine was over 2000! The good news is that you can function just fine without a thyroid - (I think that's what I'm doing now although the gland is still in place). Whether or not I'll reagain any normal function at any point in the future, now that I'm off treatment, I'll probably never find out because the stuff I take now is working just fine and I'm not going to rock the boat by stopping! Good luck, try not to worry too much - thyroids aren't in the same class with livers!

[ambersfire]

CHECK OUT THE FORUM AT ABOUT.COM THYROID SECTION RUN BY MARY SHOMAN

[ambersfire]

YOU NEED TO GET YOUR FREE T3 TESTED TO SEE IF YOUR BODY IS CONVERTING YOUR T4 INTO T3 THATS THE ONLY WAY TO KNOW FOR SURE WHATS GOING ON
DO TSH    T4 FREE     WITH T3 FREE ALSO

[alijee]

I am on week 20 of 24. After week 13 the thyroid test results were as under


TSH    5.64         Normal    0.5 to 7.0
T3      2.10          Normal    1.08 to 3.14
T4      118           Normal    59-135

I was told sub clinical hypo problem on thyroid forum. Doc on the thyroid forum said that modern lab standard for TSH is 0.3 to 3.0.  Value between 3.0 to 10.00 is considered sub clinical hypothyroid and above 10 is considered hypothyroid. He said that you should treat you thyroid so that it could not convert from sub clinical hypothyroid to hypothyroid. He also said to check Free T3, Free T4 and antibodies.  I talked to my GI and he said that nothing is wrong all the figures are in normal range. Normal is Normal. He has not asked for further test again. He is unaware of modern research about normal TSH level. I m extremely fatigued, weak, light headed and feel very bad like im dying. I feel very tired particularly legs and back of the neck area. When I go to sleep my BP goes too down. Some times I have to sit during walking because my head starts spinning an I feel im falling.  i have lost a very little hair. You can say my hair are thin than before tx. My symptoms are so similar with interferon sx that it is hard to diagnose whether it is due to thyroid or interferon. Why Lab showed normal range of TSH 0.5 to 7.0??? They are not update and using old standards.  Im confused. I m taking macobalamin with doc advice which is helping very little for numbness of arms. Im confused whether I should treat my thyroid and check it once again or not???

[zazza]

This is the answer I got from the doctor on the thyroid forum, when I was in a similar situation as you with TSH of 7.3 mlE/L and 3 weeks left to go of treatment and no possibility to get medical care for the thyroid.

"Interferon increases the risk of autoimmune thyroid disease.  This TSH abnormality is relatively mild and should not interfere with the remaining 3 weeks.  Would consider repeating the TSH and obtain thyroid auto-antibodies at the end of treatment and re-evaluating the need for thyroid specific treatment.  Once the immune system attacks the thyroid, it may become a chronic problem - so 3 more weeks of IFN are not likely to make a difference in the long-run."

You can read the entire thread here:
http://www.medhelp.org/posts/show/452512

I did the three weeks I had left of tx. At EOT my TSH was already down to 4.2. 6 weeks post tx TSH was 2.9.

Stop worrying, do your remaining weeks, and perhaps you will be as lucky as I was. You are almost done.

[zazza]

I can't find any thread/post of yours where you correspond with the doctor on the thyroid forum. Perhaps you meant you corresponded with other patients at the thyroid forum?

[nygirl7]

gosh it's hard to believe how long ago I wrote that post now - two years ago!

I've been on Synthroid since then and it manages my thyroid perfectly.  I take 88mcg a day and my TSH is at about a constant .6 which is just fine.

Of course, I wish it had never happened but looking back I see how much I was over-reacting (easy to do when you are scared right?) but for the past few years I've just taken the magic pill and been fine.

I'll be on it for the rest of my life. I treated for 72 weeks (last shot was 2 years ago last night I believe) so at the point when it all happened I was only at week 24 or so (then at like 27 or so i think is when it went to Hypo from Hyper).....doing the additional 48 weeks meant I had to lose the thyoid for good but I"ve been SVR for 2 years so.....it was a fair tradeoff I guess.

Do you remaining weeks - and hopefully yours will balance out again afterwards. I just didn't have a chance.

Good luck.

[alijee]

Oh sorry it waz too old post

[alijee]

Actually my TSH 5.64 is the result of 22.12.2008. Im affraid now it will be too high. that is why i m so worried about it. i feel very bad which i dont have words to expplain.