Tx stopped week 69!

[zazza]

Doctor just called and said I have developed hypothyroidism. Normal range of TSH-test is 0.30 - 4.0 mlE/L. Mine was 7.3. I am to stop tx immediately. I took my 69th shot yesterday. Any opinions on whether I should continue riba for the full 69th week or not? It is the interferon that affects the thyroid, right?

Interestingly enough I had the slip from the hospital and added the thyroid tests to it myself before going to the laboratory. The plan was to not check the thyroid until EOT, that is week 72. Every 12 weeks seems a little too seldom to me to check the thyroid being this can become a permanent issue.

Nurse was surprised hypo appeared this late in tx. She says she has often seen it appear at the end of a 48 week tx, but I had no problems at that time. She says I have a pretty good shot of it resolving itself since the T4 test is still normal and they therefore think they caught it early. Hope she is right. The doctor would not say anything at all about my chances though. Anybody know of any links about odds of it resolving itself vs becoming permanent?

Nurse also said this is a much more common sx in women than men. Many women apparently get hypo at middle age even without treatment, which is one reason interferon can trigger this.

These are my thyroid test results:
TSH (Tyrotropin) (normal range: 0.30 - 4.0 mlE/L)
Baseline: 2.0
Week 12: 3.4
Week 24: 3.3
Week 36: 3.9
Week 48: 2.2
Week 60: 3.7
Week 68: 7.3

T4, free (normal range: 12 - 22 pmol/L)
Baseline: 19
Week 12: 16
Week 24: 18
Week 36: 17
Week 48: 17
Week 60: 17
Week 68: 17

Just hope there is a chance for the thyroid issues to resolve themselves. I haven't been feeling any different sx than earlier, so I had no clue this was going on. I have been feeling depressed now and then and sleeping a lot, but it has been like that all through tx.

I certainly had not counted on being taken off treatment now. But I feel this is a too serious issue not to obey the doctor and stop with the interferon shots, especially since I only have 3 weeks left. Opinions?

Thank you all for your invaluable support throughout tx! I don't know what I would have done without you.

Zazza

[Proactive]

Sorry to hear this, but it sounds like you are getting good advice to stop tx now. I'd leave the riba issue to your docs. My feeling is there probably isn't much svr chance difference
between 69 weeks of tx and 72 weeks...after all, I've never seen any data on how 72 weeks was choosen as "the magic number" for 1A extenders..at least Drusanti qualified his analytical opinion of 36 weeks past undect. (did you make any changes in tx prior to your recent TSH #'s?)....chin up!! Pro

[zazza]

Thanks, Pro, for always being there! It took you 10 minutes to answer my thread!

No changes lately in interferon dosage prior to recent TSH test. I started tx weighing 67 kg (147 lbs) and thus took 100 mcg PegIntron, gained weight to 74 kg (165 lbs) by week 40 and PegIntron was raised to 120 mcg at this time.

Had 17 extra riba pills though, which I have been taking every other day since week 63, day 4, until week 68, day 5. This gave me 5 weeks of an average of 1100 mg ribavirin per day.

I was so looking forward to coming off tx and just feeling good. Now I have this new worry...

Za

[geterdone]

Sorry to hear about the thyroid problem and hope it does resolve itself once off the meds but look at it from this point, it took 68 weeks to hit the toxic point which is pretty good considering most that have thyroid issues get them early in treatment. I was wondering why you were questioning about the riba serum levels and half life of the riba. If you have just taken shot 69 and stopped the riba at this point the riba should continue on in its half life for the next couple of weeks and should bring you right up to the 72 weeks eot. I also have a thyroid problem which started about weeks 12 and 24 and was one of my concerns going into eot. Good Luck to you and hope everything works out in the end.

jasper

[cruelworld]

i bailed out several weeks ago as my tsh went to 8.5. my doc wasnt alarmed at all though, im the one who wanted to quit. and i didnt completely quit.  im on my fourth week of a 7 week taper off. my doc gave me 50 micrograms a day (small dose) of synthroid and it
went right back to normal in the 3 range.  i was pretty worried at first but the doc calmed me down. and all the research and his experience says that most recover and synthroid is the most benign drug around.  dont worry about this at all, it was only dysfunctional for a tiny time, it will bounce back. it seems like the few who have long term problems were out of range for at least 9 months.
i surely wouldnt worry about losing the last few weeks
of treatment either. from everything ive read, im not sure riba really does that much without inf. i dont know if theres much to be gained by staying on it. your war is over!
congrats!  your dragon is slain!  yippeeeeeee!

[cruelworld]

i havent been around lately, are you done yet?  whats cookin wiley racoon?

[zazza]

I love you guys!

[geterdone]

Dude, I was thinking about you when replying to zazza, coming up on shot 52 this week (see journal) remember the battle of New Orleans, well we got them flanked in the gulf (I think), lol. You should be just about done yourself and hope the step down has worked well for you also.

jasper

[CockSparrow]

Sorry to here about this. I agree that they dont check TSH often enough.
I would consider the taper with your remaining meds though.
Kind of like easing out so to speak.

SVR 4 all of us
CS

[Trish77]

I just wanted to wish you well with all this, Zazza.  You're smart and you're well informed and that will help you alot... as well as all the great input from people here.  What would we do without them, eh? :)

Take care and all the best to you.

Trish

[FlGuy]

Congratulations on finishing.  I hope you recover quickly.  You can't get much closer to 72.  If it was me, I'd take the riba for the ensuing 6 days and then call it complete. How many weeks of continuous undetected?

[zazza]

CS, even taper off with the interferon? Couldn't that decrease my chances of resolving the thyroid issue once off the meds? And I don't need to tell you how much you have meant to me throughout tx, right?! Both to me and my ex. Many are the times I have relied on your support, be it emotional or informative.

Trish, I appreciate your kind words. It is incredible how this forum enables us to reach out over the world for immediate support from people who understand what we are going through.

Za

[Tallahassee]

Hi, zazza,

Congrats with making 69 weeks!!!

I agree with CockSparrow and would recommend considering to taper off your remaining meds.

My thyroid gave up after about 85-86 weeks of treatment (actually, prior to that I was for many years on Interferon, just not on a double dose).  I had similar TSH values prior to treatment and suddenly TSH increased to ~11, so my Dr. prescribed me Thyroid meds.  I took it for about 5 months total (2.5 months until end of the treatment and for ~ 2.5 after the treatment and after discontinued taking it without my Dr.'s approval. Instead I'm taking Kelp.  My thyroid function is checked every 2 months and so far it recovered well (TSH 2.5)

I believe if I continued taking the thyroid meds, my thyroid gland probably will be on a "retirement" so to speak, since it didn't have to work at all with all the "free milk" the thyroid meds provide.

I think your thyroid will recover nicely, just make sure you have iodine in your diet and may add Tyrosine amino acid 500 mg in the morning on empty stomach with Kelp drops to help your thyroid to recover. Do not overdo it though – too much of Iodine will actually suppress your Thyroid function.

Take care and all the best all the way to SVR!!!

[Tallahassee]

Yes,

I agree with FLGuy -- Riba for an extra week will not hurt your thyroid and may help to establish a SVR

All the best!!

[zazza]

Yeah, I am leaning towards that, finishing up this 69th week with the riba. I do hope cutting my tx short by 3 weeks won't harm my odds of SVR.

My 12 week viral load test on January 31st 2007 was "borderline" - detectable below 15 IU/ml.
My 15 week viral load test on February 21st 2007 was UND.
My guess is I went UND week 13 or 14.
I was UND again week 24 and week 48.
Anyway, I have at least 53 weeks of UND. I pray this will do it for me, but I know my geno is a difficult one. I am pretty sure of the exact occasion that I got infected back in 1981. I did drugs with two guys, whom I know today both had hepatitis at the time. One had geno 1, one had geno 3. I guess it was a lottery of circumstances which geno I caught.

Don't you think the stupid hospital has the policy only to test post tx viral load once and that is at 6 months post! My doctor said: No exceptions! And this is after they have given me medication for free which is worth like 75000 dollars. All hepatitis tx is completely free of charge here in Sweden, as it is considered a contagious disease which is in the interest of the population as a whole to hold back. However, they want me to do my EOT like one week late. I think I will try to stretch that for another week, so I can at least get a 2 week post test. I hate waiting half a year!

[mikesimon]

I am sorry about your thyroid problem. I hope it resolves quickly and that your treatment is successful. Good luck Zazza. Mike

[FlGuy]

If it were me, I'd also drag my feet for as long as possible after the last riba to get that EOT pcr. For many, 6 months is an excruiciatingly long time to wait.  At least you can't beat the price. But, if you get the pcr after about 3 weeks you'll still not be sure for a while. Tough situation.  Can you get a pcr outside of the process at your own expense?  Even an un-sensitive (maybe less expensive) can be informative 2 or 3 months post tx.

[ladywhy]

I too am sorry to hear the thyroid problem....but....you got it beat! What's a couple of weeks...compared to the many that you did get through.
I so want you to be svr zazza!
I will keep you in prayer.
Love
Yvonne

[Myown]

Sorry to hear about your thyroid. I agree and don't think the few weeks will matter considering how many weeks you have already done.
Zazza, I know how hard the waiting is, especially the long wait that you have. I pray that you are SVR. This is so hard to go through. The waiting stinks. Tx wouldn't be so bad for everyone if we really did have a cure, cause when we finish tx, we would be done period. Well, I hope that your are done! I think you will be zazza.

Sending you lots of love and a big hug!
MO

[Deb_c430]

So sorry to hear  about thyroid,  maybe this is a stupid question but will two weeks change thyroid problem that much?

You have endured so much and worked so hard,  I am betting you are SVR!  

I admire your spirit so much!  

You will be ok on both things, hang in there!

Hugs

Deb

[cierra2007]

Hi sorry to hear about the thyroid, I agree with all other comments.
I pray that you are SVR and that a f******g CURE IS FOUND SOON......
The weeks go so slow the sx totally suck ect.............


God Bless

Cierra

[jmjm530]

Sorry about your thyroid problems. At this point, I don't think three extra weeks will make any difference, be it the peg or the riba. I'd follow the doctor's advice and stop. Hopefully, they caught the thyroid situation early enough so it will eventually normalize.

For others treating, make sure to get your thyroid panel done frequently during tx. I often added the panel myself (every month or two and more frequently in the beginning) because my tx team didn't seem overly concerned.

-- Jim

[jools57]

I too am sorry to hear about your thyroid. You were so awesome with advice to me when I found out I was a slow responder(geno3), made my decision to extend to 48 easier.
I'm believing you are UND/SVR. 69 weeks, you did it!!
All the best,
J

[merryBe]

boy, thyroid, it's like the least of the probs. If you have some other reasons to quit early well maybe....but thyroid is the cheapest easist thing to fix.

7 is not high.....I've been at 26-79...now that can spell trouble.

I think the advice to add a little thyroid...then do some kelp to and wean yourself off when your tx is over a while makes most sense.

also, theres no guarantee you have autoimmune/Hasimoto's or just simple glandular exaustion/or even node development, or even interferance coming from the parathyroid or even more likely the pituitary. Since HCV effects the pituitary....it may not be signalling your thyroid to make it's hormone.  
   In any case, I'd do the TSH meds, and when you do go to weaning slowly off...if you get no normallizing result then have them do an IGF-1 test to see if your pituitary is even sending out normal signals for HGH repair....chances are if the IGF-1 is low then the HCV has compromised all levels of pituitary function, which of course tells yur thyroid gland to produce it's hormone,,,,,,which is not good news, that the master gland is effected, but it is treatable.at least...and it's better to know this than to not know it and suffer some very bad symptoms unnessessarily for years.
maryB.

[zazza]

Your support means so much to me. My immediate reaction when told to stop tx was to reach out to you all. I told you before anyone else.

I was so hoping to be able to close the door to my past. Now it seems instead I risk having to take a daily reminder in the form of a thyroid pill for the rest of my life. It would be so nice to turn 50 and leave the mistakes of my youth behind.

Life has been pretty rough to me. I would just like some slack. (SVR maybe?)

[merryBe]

cheer up, it's not a forever thing in many cases both joint pain and thyroid dysfunction reverse themselves after tx given time...if not...it can be your daily reminder that you dodged a very big bullet and have much to be gratefl for!!!.

I stayed off thyroid meds for years just eating kelp and such....but finally the meds ere just easier. they only cost around 10 bucks a month.

any body and everybody should rejoice if they get such a minor set back.
our bodies all react to these drugs. It's the ones that get RA or vision probs that I feel most badly for. Really, thyroid issues are usually considered minor, especially if treated you should notice no real change in quality of life as long as a replacement hormone is taken.

[dointime]

I just want to wish you well for SVR after your long tx.  

As for the thyroid thing, I think it would be good if you could stay off the replacement hormone for a bit to see if your thyroid would kick in again on it's own.  Look into the use of kelp and tyrosine.  

My fingers crossed for you

dointime

[frijole]

Wow - that is late in treatment for those numbers to climb!.  I know nothing about the thyroid issues -- where is nygirl?  Zazza, I don't think taking more ribavirin or not, taking more interferon or not, will make much difference.  It sounds like you have had over a year clear, and doesn't that surpase the life of the longest heptacyte?  (Haven't we had that discussion before)?

I will be holding my breath until  you get some PCR's in a few weeks post.  I am hoping beyond hoping that 69 is the magic number.  

I hope you start to feel better soon, but remember, it can take as long as 6 months for the evil riba to leave the system.
frjiole

[frijole]

Wow - that is late in treatment for those numbers to climb!.  I know nothing about the thyroid issues -- where is nygirl?  Zazza, I don't think taking more ribavirin or not, taking more interferon or not, will make much difference.  It sounds like you have had over a year clear, and doesn't that surpase the life of the longest heptacyte?  (Haven't we had that discussion before)?

I will be holding my breath until  you get some PCR's in a few weeks post.  I am hoping beyond hoping that 69 is the magic number.  

I hope you start to feel better soon, but remember, it can take as long as 6 months for the evil riba to leave the system.
frjiole

[Andiamo1]

Wishing you well during the time of stress.  I hope everything returns to normal quickly.  I  agree with many of the others; a couple of weeks will not impact SVR.

Best of luck to you,
Eric

[wyntre9]

Zazza! you did it, girl!!!!!!  I agree with Pro.  how much difference can there be between 69 weeks and 72?  And i have read that most people who develop Thyroid issues go back to normal after TX.

I started my single digit countdown yesterday.  8 more for me!

Cruel, Congrats to you as well.  This has been a marathon!  be sure to post you experiences weaning off the meds.

Wishing you both a great big forever SVR!