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Hep C Discussion Forum -> Post Treatment -> Anyone else have thyroid issues as a post treatment side effect?
Post Info TOPIC: Anyone else have thyroid issues as a post treatment side effect?
Greg


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RE: Anyone else have thyroid issues as a post treatment side effect?
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Thanks everyone for your kind words, this forum is just full of wonderful people.

Mal to answer your question, I was offered the triple tx but declined for reasons I won't go into, I'm lucky I can afford to wait and see what other options present themselves and I am under a great GP who is looking after me so all in all everything is going great so will wait and see. If your ever down at Kingscliff give us a shout, great fishing and crabbing spot down here,

Blessings to all,

Greg

 



__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Karen


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Just the kind of news we all want to hear...Just beautiful!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Shep


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Greg--that is great news! That ole thyroid is quite tricky! Congrats!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
mallani


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Hi Greg,

Great news about the thyroid. Are you looking to get on a Trial? An Abbott Trial is recruiting in Brisbane. Cheers mate.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
JIme


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Greg, that's some great news for you. I'm so happy for you.  Now just tell your body to start working on the Hep C next.  No problem....;)

As you know my wife has it too and she has been gaining a lot of weight. I think it's time for her to try something else.  I'll tell her about you. There's always hope.  Thanks for sharing this and have a great day!



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Mary Jane


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xx everyone.. good news Greg.. I think I can add this to my list as well... so we it's a trade off... I'll take it..

P & L MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
Biggyb


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Very great news Greg,,



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
John William


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Awesome news Greg! I'm very happy for you. The body truly is an amzing vessel with an unpredictable ability to heal at will. Don't worry about the "High Jack" its welcome news!

Meghan is the Synthroid the hormone that may have side effects to the liver? I remember hearing of it in the Dr's office but not sure if it was the one with the negitive SX. I just went through back surgery (unexpected March 27th) with blood work all over the map. The bruising was incredible. Good luck with the hip surgery, hope all goes well!

Our Lady Alaise, hey gal! My Dr. quoted as saying that around 5% of all patients that indure the Hep Treatment will wind up with some sort of Thyroid issues and of those there will be some serious ones.

I continue to do my bloodwork every 4 weeks with my T3 and T4 levels bouncing up and down. I will continue to contemplate the thyroid removal surgery.

Touche' all!



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
Cinnamon Girl


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Wow, great news indeed, Greg, what a nice surprise!   No more thyroid meds, congrats!   

I`m very happy for you!  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Greg


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Thanks Jill, John and Biggyb,

Really apperaciate your kind words, No more pills it's great, we will still keep an eye on everything. Jill we will have to catch up, Biggyb I hope your doing well, John keep us posted mate hope all goes well. Lady A and Meghan hope all is well with you both.

Keep up the good fight.

Greg



-- Edited by Greg on Tuesday 9th of April 2013 10:56:03 PM

__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Greg


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I've had some great news today and totally unexpected. Had the usual blood test to check on my thyroid levels to see if they were behaving themselves, and everything came back normal....no anti-bodies to be seen, which means I can stop the meds 12 months earlier. Just goes to show the body is an amazing thing.

PS:

Apologies to John have highjacked your post for this one:

My Alpha Feto Protein is still up at 10 ug/L which is not good.




-- Edited by Greg on Tuesday 9th of April 2013 05:25:22 AM

__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
LadyAlaise


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Not to be a downer but before I started treatment my doc's office explained some side effects of treatment....one they said that was a permanent one was thyroid....sorry....I hope they are wrong :(

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Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
LanaiSurferGirl


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Hey John, I have been hypothyroid since treatment.  I guess it can affect us all differently.  Hopefully it will fix itself as time goes on and our bodies return to as normal as they can.  I have a blood test this week to see how it is doing.  My doc has me on the lowest dose of synthroid (synthetic thyroid hormone) for now.  I have hip surgery in 2 weeks so need to have my blood as normal as possible going into the surgery.  I don't think I want to take it after the surgery or if I need to there are pig hormones that are more natural...but some people are allergic to those.  We will see.

Good Luck,

Meghan



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
John William


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Hello everyone, thanks for the "pokes"! It has been awhile since my last post (sounds a little like Sunday morning eh?) as I have been in and out of the Dr's office, off to the Endocrinologist, Ultrasounded twice, Thyroid Scan with the Radioactive dye once and then given the options list. 

It can not be confirmed that my Hyper Thyroid condition is linked to my Hep TX. I apparently have nodules on my thyroid that are causing my condition. I can understand your situation Greg as my T3 and T4 #'s are similar to your high #'s.

I finished treatment on April 27th 2012 and my T3 & T4 #'s were normal until November 2012 when the suddenly surgered to T3-19 (Normal 2.6-6) and T4-37 (normal 9-19). They have been slowly dropping since then to T3-11 & T4-26. The specialest has confirmed that 50% of all people over the age of 50 will have a nodule or nodules on their thyroid, of those 95% are non-cancerous.

So that leaves the options list! #1- Drink a radioactive iodine solution that will kill the Thyroid and go on the hormone suppliment. #2- Have the Thyroid removal suregery and go on a hormone suppliment. #3- Try the medicated approach to balance the T3 and T4 and live with my nodules. apparently options #1 and #3 can cause some side FX including liver damage. (thought I just fixed that!)

In the interm I am to continue to do blood work every 4 weeks while I make up my mind, it is a 10 month wait to get the suregery which is the way I'm leaning. It takes 4 hours tops and 24 hours in the hospital before you can go home.

Anybody have any reports on this surgery, or had it done?

The good thing about this Hyperthyroid is Idonut.gifThanks all!

à



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"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
Greg


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Hi everyone,

Hey Jill good to see your smile again.

Shep great to see you online again how are you going?

Judy always great to see your posts.

Iris sorry it was too late to chat the other night, I need to catch up with Jill as well, my social skills are lacking somewhat.

Rick,

Sorry to hear that your in the same boat, are you under treatment for this little surprise as Shep  so nicley put it?

John,
I guess I should fill you in on my background, I started the interferon and Riba combo therapy back in early Feb 2011 for 48 weeks, but at week 24 my I was not responding well enough to continue tx as my levels were just above the mark. Earlier this year I started to feel the the effects of what we now know is Thyrotoxicosis. So I was told it would be about 18 months to clear this and get my thyroid back to normal and it would take a while for my Doc to sort out the proper level of medication to use. So these are my test results and a small account of where I'm up to so far as you can see it may take some time for you and your Doc to adjust what is right for you so be prepared for it. Again your approach might be different.

1st Thyroid Function Test 27/08/12

Free T4 - H 31.7 pmol/L  (9.0 - 19.0)

Free T3 - H 10.0 pmol/L  (2.6 - 6.0)

TSH      - L <0.01 mU/L    (0.3 - 4.0)

4x5mg Neo-Mercazole (Carbimazole)

2nd Test 29/08/12

Free T4 - H 17.2

Free T3 - H 7.9

TSH  - <0.01

3x5mg

3rd Test 04/12/12

Free T4 - H 9.0  (10-20)

Free T3 - H 4.1  (2.8- 6.8)

TSH  12 mU/L    (0.40 - 4.00)

As you can see my levels are now way too low, so we are going to try that one pill fix you were talking about and the next blood work will be mid Jan 2013. By rights I should be feeling tired but I am feeling great.

So I hope that sheds a bit of light on what you may expect to happen, again it will depend on your situation. It will take about 6 weeks for your system to start responding to the drugs so hang in there mate, we are all here for ya.

Good luck and Cheers

Greg

PS Congratz on your UND ...



-- Edited by Greg on Friday 7th of December 2012 02:30:39 AM

__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Cinnamon Girl


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Hi John, great to hear from you again, and many congrats on the SVR!!  w00t.gif  biggrin

I`m sorry to hear about your post tx thyroid problems though, those symptoms must have been very alarming for you before you received the diagnosis. I hope you don`t have to wait too long for a referral.

Do keep us posted and take care.  Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
John William


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Hello Greg, thanks for your reply.

I'm in Canada and although we have a solid health care system it can take a while to get a referel to a specialist, hence the inquiries. I have not had any issues with any of the Dr.'s that I have been referred to yet,  but my family Dr. has been tending to my intire family for 35 years, (I dread the day he retires). He makes the referels to the specialists.

The one SX I don't mind is the ability to eat as much of anything as I want and never gain weight (reminds me of my teenage years), but the rest of them are the ones that raise concern.

I will pulling for you as you continue your adventure, please keep me up to date as I will you. I think our conditions seem to be similar.

A warm Canadian, "Good Day" to you.



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
John William


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My Thanks for your comments Judy. I'm thinking this little gift is one I could have done without, but all in stride. I'm not exactly a teenager any more and have been heard saying on more than one occasion "if I'd known I was going to live this long I would have treated my self better". LOL I'm not off to the Mayo Clinic yet! I will keep posting to the thread as it progresses.

Thank you again for your wishes, and hugs back to you.



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
John William


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Thanks Rick! Completing treatment in it self is an event. Congradulations to you. I'm awaiting my referel and will keep the info folowing. I'm not sure how long it might taker to even get to see a specialest, but I will keep the faith it can be rectified.

all the best to you, and thank you again.



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
John William


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Thank you Shep! I pretty much have grown back all the hair, it was pretty dreadfull at one time. I was afraid to take a shower for fear of plugging the drain. I hope your thyroid comdition improves. I'm going to get a referel to a specialest on the 17th of December and will keep posting to this thread. I must say though that I much prefer these SX to the treatment ones though. Best to you!!



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
Shep


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Hi John--yep have had thyroid trouble since finishing tx--but I was hypothyroid before starting anyway and during tx had some thyroid issues. It has been a constant monitoring of TSH and T3 or T4 (can't remember which) --finally after about 3 months it appears to be getting under control. But the thyroi ddid go hyper before it was semi-tamed which meant continued weight loss, anxiety, racing heart, insomnia, depression, and major hair loss--it was not very much fun. Fortunately it can be controlled with proper dosage of thyroid meds! Yea!! Hope your thyroid issues get resolved quickly--it really makes you feel yucky and after getting through tx--truly sucks.



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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
mc99


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Congrats on the Und John, sounds like we are both having just about the same post tx side effects. I have not had a thyroid panel done since I finished

tx but do have just about every side effect you mentioned. My six month Dr. visit he pretty much told me he was done with me, so guess I will find a new

GI Dr in the near future and see if he can help. Good luck and do keep us posted.



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Judy S


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The UND is great news, John; congratulations!!  I'm hoping you get the same news as Greg regarding your hyperthyroid issue.  In worst case, they can remove your thyroid or destroy it with radioactive iodine.  In that case, you would take thyroid hormone replacement pills. Either way, it is "fix-able".  Hang in there until you get some help from a specialist.  The worst is not knowing what's going on.  Now that you know, just hang on and stay focused on treating it.  Your battle with the virus is finished, but unfortunately this virus likes to leave us little parting gifts.  Stay strong and keep us posted, please!  Hugs to you.



__________________

Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
Greg


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Hi John,

Sorry to hear about your thyroid problems, I'm in the same boat. I finished tx in Aug 2011, and like you experienced the same symptons, I was bloodly scared didn't understand what was going on and it took about 5 or 6 visits until they checked for thyroid problems. I'm now taking Neo-Mercazole 5mg and have been for the last two months. I started with two in the morning and two at night for the first month, then after blood work this was reduced to 2x morning and 1x at night.

I did more blood work yesterday and have an appt to see my doc tomorrow to see if my levels are okay and if need be adjust the regime again. I was told it would take about 18 months for this to be cleared up and that it wasn't serious. So in short my doc who has been treating me for the last 12 years and I trust him completely I might add, ( Don't get me started on trusting my specialist......thats another story lol ) has reassured me that in my case it is a "simple pill fix" I do hope it is the same for you. After the first month I'm feeling bloodly great mate.

Wish you all the best mate keep us posted, I've got my fingers crossed for ya.

Best Wishes,

Greg



__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Iris Dragonfly


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John, Congratulations on the UND!!! Hope they can figure out what's going on, sorry I don't have an answer. Keep us posted, wishing you well, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
John William


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Well I'm happy to say that 7 months after treatment my last blood work came back as UND!! YAHOO!! Yepee!! There is no looking back, unless it will help someone else, of course.

But I have been having some post treatment sx that have been explained by my nurse as being Hyper Thyroid. She explained that Thyroid issues are common in about 4% of all post treatment patients. Hyper thyroid being that I continue to loose weight due to over motabolizing (hope I spelt that right).

I couldn't figure out my sudden anxiety attacks, shaking hands, fluttering heart, severe mood swings, constant appetite, change in digestive and bathroom habits, restless sleeps and my continuing to loose weight allthough I was eating so much. She explained that this was picked up in the post treatment bloodwork as they check the Thyroid along with the Hemoglobin.

I'm now off to see my family doctor for a referel to a specialest as I'm told this is not a simple "take a pill fix". Anyone else??

I'll keep you posted.



__________________

"my plan is to live forever.........so far so good"

Genotype 3a, started 2 X tx Aug 19/11on Rib/Peg 36 wk tx, VL <43 UND in wk 8, Enzymes were 78 now at 22.

August 31/12 alls good in the blood work!

November 5/12 SRV Obtained, YAHOO! YEEPEE!
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