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under active thyroid after shot 22

by barryd, Feb 19, 2005 12:00AM
i am on peg and copeg, i took my monthly blood test at shot 18  and was advised that i dropped 2 logs, i was not that thrilled guess i expected to much or a miracle, then i took my monthly blood test and this time the Dr calls and says that my thyroid is way of and that i should take another blood test asap, OK i went with the flow, easier than jumping off a roof, i took my 10;AM FRI MORN SHOT AND WENT TO THE DR. THAT AFTERNOON, YESTERDAY AFTER DOING SHOT 22, HE INFORMS ME I HAVE AN UNDER ACTIVE THYROID AND I HAVE TO STOP MY MEDS, HE BELIEVES THE MEDS CAUSED THIS AND WANTS TO SEE IF AFTER 6 WEEKS MY THYROID LEVEL COMES BACK UP, IF IT DOES HE WILL PUT ME RIGHT BACK ON THE MEDS, IF NOT I HAVE TO START THYROID MED AND WAIT TILL I STABILIZE AFTER THE THYROID MED AND THEN CONTINUE, MY QUESTION IS IF THE MEDS CAUSED THIS AM I DONE FOR AS Far as hepc treatment, he explained the whole situation to me but i went into a mental coma because i thought i was half done with tx, and now i have no idea what my fate is , any one have any similar comparison or any thoughts, or am i just taking this way out of proportion, ihave hepc gen1, 52 years old, male, one other quick note, i have also been extremely lucky and have had no sides at all, except for some once in a blue moon itching and a rough time sleeping every so often, any comments would be very welcome, in spite of what people say , i believe only the people who have it or are involved in a forum like this understand our dilemmas. thank you..
Member Comments (15)

by Laika, Feb 19, 2005 12:00AM
To: barryd
I don't think it's the protocol to take you off treatment just because your thyroid is going down.  Lots of people have thyroid trouble from the hepC meds.  Someone will come along who has experience with this to answer your question, but I believe they usually just put you on throid hormone and you go on with your hepC treatment.  Anyway, while you're waiting, scroll down to posts on 2/13 and 2/9 where you will see thyroid issues addressed, you may find some interesting info there.

by Docsgold, Feb 19, 2005 12:00AM
To: barryd
I was put on thyroid hormone during tx, about 3.5 mos into tx when my thyroid blew.  How are you feeling--no problems from being hypothyroid?  Once I got the synthroid leveled out, and it does take a while, I felt so much better.  I have not heard of any physician taking patients off tx to see if thyroid function returns.  It is the hepc meds that cause thryoid dysfunction, so it would seem to me that this problem would be apt to happen again if you restarted hepc meds.  Just my opinion, perhaps your doc knows something new.  Good luck to you.  I am sure others will be along with other opinions.

by layla, Feb 19, 2005 12:00AM
To: barryd
I had the a similar experience.  Initialy I did not have any major sx. I found out much later when the sx did hit (and very badly) they were actually from thyroid disfunction. I also had a 2 log drop at 12 weeks but was not clear. I did not stop tx and I SO HAPPY I did not. I absolutley would not want to go through that again.  I was put on a thyroid meds, mine is levoxyl, and once the meds got to the right level I felt much better. It does take awhile. The problem for me was it took so long to catch on it was the thyroid that mine was lost and now I have to take a pill a day for the rest of my life BUT I am SVR. I have met a few who caught the thryoid problem right away and got on meds then were able to stop meds after 6 or so months after finishing tx. Ths is unusual though, most lose the thyroid. For most people once your thryoid starts going it is just a matter of time so I figure you may as well finish tx. Of coarse that is just my personal opinion. The thyroid typically does not come back into use like your liver. The time it takes to totally burn out really varies with the individual. Some people lose there thyroid right after tx. As for only having a 2 log drop at 18 weeks, like I said I didn't clear at 12 week. I did do extended tx at full dose for 72 weeks. I am now SVR. My hepatologist was aggressive when I did not clear and recommended  tx for 48 weeks from clearing. I have no regrets.
I wish you the best in your decision. LL

by layla, Feb 19, 2005 12:00AM
To: barryd
a thyroid site:
http://www.endocrineweb.com/thyroid.html

by DH Bill, Feb 19, 2005 12:00AM
To: barryd
Layla is totally right on. I have never heard of stoping tx due to hypothyroid. I lost my thyroid but also am SVR at 6 month post tx. I would ask to test more for thyroid and stay on tx unless there is other problems the doc is concerned about.

I believe a lot of my sides during tx were from my hypothyroid but my doc wasn't paying enough attention to my treatment. I'm feeling much better since I started thr thyroid meds.

by DH Bill, Feb 19, 2005 12:00AM
To: barryd
Also, I was 1b male 55, my sides got worse the last 6 months into it but. It is typical to continue tx I believe 36 weeks from the time you clear? Is that correct Layla???????

by layla, Feb 19, 2005 12:00AM
To: dh bill
Hi there, I hope you are having a nice weekend...
I beleive many docs do say 36 weeks after clearing but mine said 48 from clearing so that is what I did. For me not clearing by 12 weeks really scared me. Personally I gaged that by how long it took me to clear. If I had cleared at 12 weeks I would still have went 36 weeks from that time. It's really a personal choice, that is as long as your doc (and insurance) agree. LL

by KICKED, Feb 19, 2005 12:00AM
My thiroid went out of wack. Put me on thiriod meds. I stop taking them and went emotionally stupid.  Went back on them.  This was caused by the Pegintron.  No mention of being take off just for that.  I am doing good now and just did my 24 HCV test yesterday.  This will be a painful 2 week wait for results.

by DoubleDose, Feb 19, 2005 12:00AM
To: BarryD / reply
I have NEVER heard of any prominent HCV doctor taking his patient off the interferon therapy regime because their thyroid was going hypo!!!  This is pretty much par for the course with interferon, and can be treated during and/or after tx.  Your thyroid may return to normal after tx is finished, and it may not..only time will tell...and if it does not...you can take synthroid to compensate.  

Your doctor is endangering your whole program by advising you to stop medications....and you are having a good response with a 2-log drop.  You need to QUICKLY either get your doctor to reverse his decision  OR find a highly experienced Hep-C doctor in your area and make an emergency appointment, so that you do NOT have a break in your therapy.  The LAST thing you want now is for the virus to have a chance to rebound.

So if your doctor removes you from therapy, HOW does he plan to put you back on again, and avoid the same thyroid issue????  It will just happen again!  So why throw away all the time you have put in...just to wait and see what your thyroid is going to do..   That is what one does AFTER therapy is completed.  A great many of us went through long, extended therapies with our thyroids malfunctioning throughout!  Most doctors are entirely accustomed to this happening.  Why does your doctor seem so rattled????  Is he a doctor who has had a great amount of experience treating HCV patients using the new powerful Pegylated therapies?  Sounds like he is somewhat green.

Get on the phone and get some answers.  Find out who the top local HCV practitioner is...and GET them involved.  I assume you are still on a weekly dose, and have not let things fizzle out.
For the time being, I would try to stay up to speed on dosing, until you get better advice!

Please let us know what feedback you receive.

I did 18 months with my thyroid out of whack!!!!  I am now close to normal on my thyroid, but take a small dose of synthroid to compensate.  The dose is really optional, because my numbers are now so close to the norm.  Many people recover thyroid function after tx.  I have never heard of quitting during tx because of it!!!!  Get CURED, THEN worry about your thyroid.

DoubleDose

by sofarsogood, Feb 19, 2005 12:00AM
To: barryd
My thyroid took a hit on tx. Diagnosed hypothyroidism 2 months after tx with a sky high thyroid stimulating hormone and associated low t3 & t4. Does not make sense the doc taking you off tx for this. Hold your ground. Get on replacement. Tell him to e-mail me. I suffered immensly with horrible sides. Made it through 6 months of treatment and ended up negative VL after 6 months off.

by doll face, Feb 20, 2005 12:00AM
To: barry
I hate to tell you this but I agree with everyone else. I went hypothyroid about 4 months into second round of tx (72 weeks)But,I am the one who caught it. I had really bad sides and told my doctor to check my thyroid, he didn't think that was the problem due to the fact I was getting my tsh checked constantly but low and behold it was way out of whack.There was never any mention of going off of tx. I was just given synthroid and it leveled out. It does take a while to even out and sometimes they need to do extra blood work and try different dosages but it is well worth it.

I don't believe I have ever heard of anyone being taken off of tx from it though. Don't give in just yet. Hypothyroidism is caused by our meds, but there are ways to treat it.Good Luck.

by barryd, Feb 20, 2005 12:00AM
thank you all , i took my weekly shot of peg on Fri. before Dr. appointment, i hower missed the copegus since Friday afternoon, i am going back on my regular med schedule with the copegus at my normal time today, and will continue to do so, i will be contacting my Dr. i believe he is out till Tue. but i thought the same thing when i was in his office Fri, but i was so overwhelmed that i just did not think to question the advice that he gave, it makes no sense to stop if he is in fact putting me back on, i just did shot 22 Fri, it would be a major waste to throw that away, although i have been lucky i feel fine even with the meds and thyroid , i have no sides at all, thank you guys more than you know for taking the time to give me your input, i will post right after my conference with my DR.

by Califia, Feb 20, 2005 12:00AM
To: .
Yep,  everyone's right.   Maybe you can ask for a referral to a proper endocrinologist who can oversee the thyroid supplementation.  Your doctor does not sound up to it.   (Ask = firmly demand)
Good luck and stay on treatment!

by barryd, Feb 22, 2005 12:00AM
o.k. my Dr said a normal thyroid count is under 4, mine is over 150+ on top of this i have no abnormal thyroid symptoms, thats why he asked me to stop the meds so that the count would stabilize normally and then i would be put on adjustable thyroid med and back on tx, i will know in 3 weeks after my blood test, i don't get it but what else can i do, thanks for listening again.

by DoubleDose, Feb 23, 2005 12:00AM
To: BarryD
Sounds to me like the test was for TSH, which is a measure of how hard your thyroid is working to produce the thyroid hormones.
A TSH in the 150 range means that it is on high overdrive, and you need thyroid hormone supplementation (synthroid), which in the correct dosage will bring your thyroid TSH test back to the normal range (under 4).

I STILL do not for the life of me understand why this should interrupt or shut down your therapy!!!!!

Call another HCV doctor and get a second opinion, before you lose the interferon dosing effect, and the virus rebounds.

In that case you will lose the weeks of therapy already accrued, and will be starting from square one!  Why does your doctor think this makes sense???  How does he plan to prevent it from happening again when you restart tx???  Why can you not just normalize your TSH WHILE ON therapy, by taking thyroid replacement medication????

You need to talk to a doctor who has treated hundreds of HCV patients, and has dealt with this very common thyroid problem!

Good Luck!!!!    Don't get pushed around, and have to pay the price by doing therapy over again from week one!

DoubleDose
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