hypothyroidism and hep C

A few weeks ago I posted here that my abdomen swelled up and that I had to go to Michigan to have an ultrasound done. Well the results are in: The good news is that I do not have ascites.(fluid build up in the abdomen) I also insisted on a thyroid test (which we were not going to do seeing as I just had one done in January that came back normal) results: My thyroid has quit functioning) hypothyroidism

My doctor said that about4% of patients on interferon will develope this disease. And that thereis a slim chance that when I am done with tx that everything will return to normal , although not likely.

In the mean time until they can come up with the right dose of thyroid medication I will continue to swell up, gain weight,ache,be cold all the time and have bouts of depression (who wouldn't) I am on an AD.The worst is the bloating part because of the blood build up putting pressure on everything.

I know that I read here that someone else was having problems with thier thyroid due to this tx and really NEED to hear from anyone, who can help ease my mind or give me advise on how to deal with this new side the dragon has thrown at me.

We have both agreed that stopping tx now is not an option although the thought does get through once in awhile.

Thank you in advance for any information or support that you can offer.    Kim

[lizzee]

I TOO, LOST MY THROID FUNCTION WHILE I ON TX.(46 WEEKS)
I AM STILL ON SYNTHROID.
IT WILL HELP YOU. I KNOW I HAVE HAD TO BOOST MY MEDS AT TIMES.
ONCE U GET ON TRACK WITH IT..U WILL FEEL A DIFFERENCE.
I ACTUALLY STARTED OFF AS BEING HYPERTHYROID AND THEN WENT TO HYPOTHYROID WHILE BEING ON TX.
U WILL BE OK....ITS GETTING THE DOSE RIGHT.
THAT SHOULD NOT TAKE LONG THOUGH.I KNOW GETTING BLOWN UP IS VERY DEPRESSING.
FIGHT HARD!
BE WELL,
LIZE  :O)

[CARUU]

I also developed thyroid disease on tx.  It's called "silent thyroiditis"  and causes hyperthyroid symptoms.  My understanding is that I could cycle into hypothyroidism or it could resolve an go back to normal.  I had 5 week tests done this week and will see my endocrinologist tomorrow.  This has been VERY difficult to deal with, along with the sx of tx.  I can relate to your feelings of depression, uncertaintity, etc.  I keep hearing, as Lize said, that it will get better.  It is a little better now than it was a month ago, but I'm still having heart palpatations, shortness of breath, hot head, etc., etc.  My last Pegasys injection is this Friday and I'm hoping that's going to make a big difference.  Hang in there and I hope you feel better soon.  caruu

[britgirl]

I developed hypothyroidism right at the end of tx (24 weeks). It was picked up in a blood test. Unlike you, I had no symptoms, or, at least, none that I didn't think was a result of the tx. No bloating or depression, for example. I have now been on synthroid for a year and a half, and had the dose increased from 50 to 75mg a day about eight months ago. I feel fine. In my case the problem has been the loss of hair, which never grew back. Still, I'd take that any day over bloating and depression. I hope you gert the right dose for you sorted out.

[thanbey]

Seems there may be some differences in the TYPE of thyroid problems associated with interferon therapy and there may be some issues regarding how it is managed.

I offer this to share with your physician for purposes of discussion.

Thyrotoxicosis induced by alpha-interferon therapy in chronic viral hepatitis

best,

thanbey

Hepatitis C Outreach Project

[sugie]

ATTENTION NON-RESPONDERS OR ALL- First sorry to break in on this thread, but no more questions today. Does anyone know about Ozone therapy for Hep C???????An alternative that is supposed to work???????Thanks

[thepoet]

Yea no more questions for the day. But I will say that I have some blowting going on but will not get see the specialist till the 29th. I have been fighting with my HMO to cover me and they finially called me yesterday to tell me they would, but I still feel they will try to encourage the doctor to spend as lease as possible on my treatmeant. I do have a question tho, for all who had a biopsy, does it hurt bad and how long to heal from it? I have heard of people telling me that they missed and had to have it done a second time with ultra sound to guilde the needle? Should I insist on the ultra sound from the beginning? I have had a count of upto 8 million and geno 1b, the monster is large in me I guess, Im upset now, can someone give some answers?

[CARUU]

Thanby's message is consistent with what I've been told by my endo.  I was tested for the antibodies and had a thyroid scan.  I didn't have the antibodies and the uptake was low, thus, the transient thyrotoxicosis (silent thyroiditis) dx.  It's the best outcome, under the circumstances.  Graves would be a more serious dx and require more extreme treatment.  I'm still looking at the possibility of progression to hypothyroidism, but am currently still in the "hot" phase.  

The difference between Graves and thyroiditis is that with graves you are overproducing thyroid hormone.  With thyroiditis your thyroid is inflammed and "dumping" thyroid hormone into the blood stream.  They both have the same symptoms, but different treatment (graves can be treated wtih antithyroid, thyroiditis has to resolve itself.  Beta blockers help relieve the symptoms of both).  

I haven't experienced or looked into hypothyroid effects and symptoms, but I've had many people tell me they take synthyroid and do well with it.  I'm hoping I don't progress to hypo, but I know it's a possibility.  With close monitoring, I believe the doc could catch it and prescribe medicine before it gets extreme.  Right now I would really like to be done with the hyperthyroid symptoms!  I guess I'll never know if this was an underlying problem that the INF uncovered or if the INF caused it.  It doesn't matter now, just have to deal with it.  

[OkieJim]

Whow!!
You almost made it too??? I can't believe your almost done. Good for you.

I went hypothyroid during TX. Had to use synthroid for 2.5 months. Leveled out just before ending TX and my GI took me off the synthroid. He never checked me again because I completed the TX. I see my PCP next week and he will check me again to determine if everything came back. I don't have any of your symptoms.

Headaches are occuring but water is helping.
I'm now almost 6 weeks post TX. Got energy and real skin color again yah hoo. No more looking like a zombie.

[LvdByGod]

i got hypothyroid before i started tx. i was told hepc can sometimes cause it,in and of itself. i take .5 synthriod everyday and will need to for the rest of my life... it works great. no problems to deal with as a result.

i was bloated but it has resolved since the start of tx. but i'm not sure what the cause was. the dr. said it could be from my blood pressure meds. "norvask" he said that could cause bloating too.

hypothiroid can cause us to gain weight but i'm not sure if there is any other problems it causes. if anyone knows let me know.

[honey1616]

I am also a 1 with 8 mil vl but I really don't think you can take your viral load into full account here as there is other things that need to add up also.  Some people have low vl's and more damage and vice versus.  You said "bloating" you have?  Where is it?  In the stomach area?  Are you having any other symptoms?  If you are answering yes...I think you need to definitely get into dr before next week and see what is going on.

[CARUU]

I'm happy to hear you are getting back to your old self.  How long has it been since you finished up tx?  Is the PCP visit to follow-up on the HCV or thyroid?  I'm so excited about finally getting to my last shot!  I have been offered the opportunity to take on a big project at work and don't know if I should do it.  How long did it take for you to start getting your energy back.  Do you know what the protocol is for follow-up tests?  I currently have an RNA test pending (should hear early next week), a CBC scheduled for next week (something came back low) and an appt. in 5 weeks.  I hope I can soon go from managing this illness to managing something more productive at work!  Thanks for the reminder about water, I have a headache now! caruu

[doll face]

My TSH was 26.87 not exactly sure what that means yet still looking things up but normal is (0.50-5.20)Can anyone explain in laymans terms  what this means?

[CARUU]

If the TSH is low, you are making/releasing too much thyroid hormone (Hyper) and if it's high, you're not making enough (Hypo).  There are other things they look at (T4, Free T4, Free T3) to do the full analysis.  There is a ton of info on this on the web if you do a google search on thyroid disease. caruu

[LvdByGod]

hi,okie. how are you? i'm glad your off and doing well. i would have that blood test for thyroid again because from what i hear once we get it we got it for life. hope i'm wrong in your case.


I got my PCR/RNA done and back from the lab and i'm less than 615 copies iu.  :O)  I'm going on month 6 for type 3a. so for now i'm on track and apear to be a responder... so that's my good news...next time i will ask for the heptimax, tests down to 5 iu,i believe.

i have at least 3 more months he wants me on tx. so says new dr. who wants me on longer cause my liver is still dieing. alt/ast still high. says he will put me on high doses of interferon after that if alt/ast doesn't go down by the end of the next 3 months. and after that it's maintainance interferon reguardless if i clear or not due to early cirrhosis. that was sad to hear but, at least this dr. isn't brushing me off saying, "you will be just fine", like the last one did. take care okie, sandi

[doll face]

Thank you all... you have no idea how much you have eased my mind.I did do a search and found some very useful information.I started the synthyroid this morning so hopefully we will find the right dose quickly.

It never ceases to amaze me how many wonderful, caring and informative  people there are here. Ecspecially when we are all playing nicely :0)

By the way I planted a lilac bush in honor of our family here. I was a couple of days late but got it done

God Bless all of you and  your families     Kim

[litecloud]

Got my test results on the sonogram: NORMAL
Got my geno type : 1A
The nurse who called me with the results told me they treat for a year with good results, I have not spoken to the doctor and he can not see me till april 6...
So my questions are about the geno type and is it the good one or the bad one.
What to they treat it with and for how long.
Thanks guys love yah !! Thanks for the info on the kits, am calling tomorrow to get a head start, am getting prepared to fight, this nasty demon.
How did this awful desease get the name the dragon, I think that is too good of a name for this awful **** !!
A comment on sleep, I can not sleep at night, I have noticed that some of the symtoms (symptoms) the people in treatment have, I have on a smaller scale, I do not have the sores in my mouth or rashes. I do feel for the ones with the sores, my heart and prayers go out to you.
The group of people in this forum are brave people,strong minded and putting one hell of a fight. You guys have giving me courage to fight this, even though some of you have scared me in your comments of depression and having to be on AD. Some of the side effects you guys have gone thru really scare me, but I know I have to be strong and with you guys and your wonderful personalitys, I know I can do this.. BUT am still a big baby!!
I am gonna take Indianas advice, nive PJ's nice blankie, nice awsomely cool sun glasses. Boy am going to be the talk of my work and this town, when I go parading every where like that,when people asked me who dressed me am gonna tell the Indiana did.

[susan400]

I have all the symptoms of having a thyroid problem, but it's been tested numerous times and is always normal.  I have the constipation/bloatings, depression, sensitivity to cold, etc.  While on my treatment (I've only been off of it 1 week tomorrow), I had such problems with appetite that I lost 25 lbs. And now, off of treatment, I'm having insomnia.  

I wish you well with getting everything regulated.

Susan400

[honey1616]

Well...sounds like you are ready to go!!  Might I add..the ride of your life LOL  Genotype 1 is the 48 weeker and the hardest to clear.  I think survive rate is 50% for us oners!  But hey...You got a great attitude and seem pretty tough so you got the gear for that!  April 6th is just around the corner so you can join us here on our moaning and groaning LOL and of course our crazy quirky days also!!  You can keep us giggling!!

[kathyf]

I, too have had the symptoms since stopping treatment, however, I had a test when I completed tx a year ago and then another at my gyno's a couple months later, and they said no - they didn't say I was "normal", though.  Hang in there, Doll Face!

Lize, you helped me so much when I was on tx - I hope you are well!

Kathy

[OkieJim]

So happy to hear from you again. My alt/ast never made it to normal levels but my GI has basically blown me off. My primary DR. is going to do liver panel and tyroid test next week I believe. I was also at cirrosis (cirrhosis) pre-TX. No maintenance for me yet. We will see next week I guess.  Hang in there it does sound like you have responded. I don't know what your baseline was. Still foggy but I think it's the age thing now can't blame it on TX. You hang in there girl. My prayer have not stopped for all of us here.

[hph5477]

According to my doc, us 1's have a 50% chance of SVR.  If we have the 2-log drop by wk 12, our chances increase to 60%; then is we are undetectable at wk 24, our chances increase to 70%.  And we continue on for a total of 48 wks tx.

I had the 2-log drop at wk 12 but the virus was still detectable (down to 370 from 596,000) so I'm considered a slow responder.  If I'm undectatable at wk 24 (next wk for me) then I'll continue and possibly extend tx to a total of 60 wks.  I think they are finding now that slow responders have a better chance of SVR with the extended tx.

Good luck with your tx.  I keep a wkly journal of my tx and sx, so if you ever want to peruse, just let me know and I can email.

[litecloud]

LvdBYGod,Thank so much from the encouraging words, it sure made me feel better, OK night night.
Night NIght Chev "my little buddy"

[litecloud]

Sorry I called you Honey, Baby

[LvdByGod]

bless your heart. you will be a great fellow dragon slayer... i remember how scared i was to start after hearing about the tx. but, i was pleasantly surprised by my lack of sides, once i started.

my plan:  i built myself up for the worst so i was ready for anything,then once i started it was a relief and i was so glad that it was so much easier than i had imagined...get a game plan and stick to it ;O)

keep in mind that most if not all of the sides go away with completion of treatment,and most if not all can be managed by other meds...not everyone gets depression either...if you notice we all talk about different side effects but, we all do not have all of them. example; i have never gotton any sores in my mouth but i have the brain fog...i have never gotton headaches but, i do have some body aches...i have never gotton nausea but i did get a fevor for a few days...

i do pray you will be one of the ones who gets by easy...there are more and more of us. esp. on pegasys/copeg which is sounding like it's easier than the other interferon. gosh, i forgot the name of it... brain fog... does anyone remember?

[litecloud]

Boy it looks that am in for a ride !!!
Chevy:, funny about Indianas E-mail maybe I will make a picket poster with a picture of him and his Badger and what ever other animals his into just remember he his be in his PJ"s and glasses and dont forget the blankie, he will be a poster child !!! Just kiddin Indi!!
Am glad you have your humor still and hope your feeling better.
Honey: Wow 50 % that even pisses me more. This is not a dragon it is the possetion of a demon, who is selfish and only thinks of his hunger, who cares not for our feelings, who cares not wether we will live or die. I need a good exorcist any body know of one.

[berlynn]

thepoet,....My biopsy experience was no big deal..They did use some type of machine to help guide it....but I didn't feel a thing when they did it... and the doc even showed me the sample floating in a jar (looked like a teeny worm..eeewwwwww).They did give me something to relax however...but..unfortunately I was so dehydrated...from fasting that I got more uptight by the numerous STICKS it took them to find my vein....ouch...but after I finally relaxed...it was a piece of cake. They had me lie on my side for about 4 hours to make sure that I clotted OK. I dozed mostly. Then I took one of the pain pills the doc gave me and went to a movies with my daughter. By the next day, I didn't need anymore of the pain pills (only took 3 cause I was afraid of it hurting than it actually did hurt)....I know...I'm a big baby...haahaha... I was just fine...Just my experience...It's not ALL bad...I promise...good luck, Kim

Ps. I also am under the impression that viral load fluctuates so easily that it is not a major factor in liver damage....mine was over 6.5 mil.,but I had very little liver damage.

carru...I'm sorry , I can't remmember what your amount of tx was. And what geno type are you. I am getting near the end..and am not sure whether to possibly extend tx. if it might up my percentages some. I am a 42/48 and geno 1.,kim


sandi...hey, I am glad to hear your responding. Keep positive:)

litecloud...You Go Girl!!!! Your positive  outlook going into this battle will be your strength. Don't worry about the sx. you hear about on this forum...we all have some to some degree...but you usually will only hear about the not so nice ones....hahaha...cause that is when we wanna whine...and want our friends here to give us verbal hugs and help us feel better. Unfortunately....we sometimes focus too much on what makes us uncomfortable (and that would be ME lately)...LOL..and not enough on what good we are gaining from this experience. Many of us will come out of this much stronger....in one way or another....with your attitude and obvious gifts...you will be just fine.,kim

[tina b]

high alt/ast and brain fog post tx can be a sign of high ferritin (iron storage, not just iron level), if you are already gonna have blood done, ask for ferritin level or complete iron work up. These meds can cause it and so can hemochromotosis.

[litecloud]

Hey there thank you, I know there is always talk about the sides, but what are the possitive sides: diet chance, no alcohol or other mind altering smoke or chemicals. Those are the only ones I can think of, I would and I wouldn't called them possitive since we are forced to change our ways.Are there any others? mmmm You said the word gifts, I had gifts, what are you sending me, mmm something good I hope, or maybe it was ROCHE, who is sending me presents, am sure a very well deserve kit. TEEEHEE

[Tallblonde]

Study:  Drug Mimics Ribavirin without Anemia Risk

A potential hepatitis medication that achieves results similar to ribavirin , but reduces the risk of a serious ribavirin-related side effect?anemia?may be on its way to FDA approval soon. Viramidine, an oral medication manufactured by Valeant Pharmaceuticals, had outcomes similar to ribavirin in a Phase II trial sponsored by the company, the interim results of which are about to be unveiled at an upcoming European medical conference,1 and at a U.S. conference the following month.2

Nucleoside Analogs
Viramidine is a nucleoside analog, designed as an antiviral medication, and works in the same way as nucleoside analogs given to patients with HIV. One of the most well known of these drugs is AZT. Nucleoside analogs are in a class of drugs known as reserve transcriptase inhibitors. They prevent the hepatitis virus from making copies of itself by interfering with the reverse transcriptase enzyme that aids the virus in doing that.

A Ribavirin Replacement?
Valeant is releasing preliminary data from the ongoing 72-week trial that covers the initial 24 weeks. In the study that involved patients never before treated for hepatitis, doctors assigned doses to one group ranging from 800 milligrams (mg) to 1600 mg of Viramidine in combination with pegylated interferon.

A second group took the more conventional combination therapy of pegylated interferon and ribavirin so that the two results could be compared.

The results after 6 months showed that outcomes in patients using Viramidine were similar to those using ribavirin. Eighty-three percent of those in the Viramidine group achieved at least a 100-fold reduction, or non-detectable, HCV RNA, the genetic material that indicates the presence of the virus.

Comparably, 83 percent of those taking the ribavirin combination treatment also achieved at least a 100-fold, or non-detectable, HCV RNA in the study, the authors reported.

Even more significant, while 24 percent of the patients taking ribavirin contracted anemia, a mere 2 percent did in the group taking Viramidine, according to the study results.

Those receiving the lower doses (800-1200 mg) of Viramidine had no anemia 24 months later. Other side effects that did occur were similar in both groups.

Anemia is a common side effect of ribavirin. It's a blood condition in which too few red blood cells are being produced. As a result, too little oxygen is being supplied to your organs and tissues, and fatigue is the most common symptom.3

The Next Phase
In January, Valeant announced its plans to expedite research and development of Viramidine. "Our clinical data have allowed us to begin Phase III clinical trials for Viramidine after 12 weeks of our 72-week Phase II program," said Robert O'Leary, the company's chairman and CEO, in a press release.

Phase II trials are typically smaller than Phase III studies. Phase II trials are conducted with several hundred patients to see certain medications are effective and to further evaluate their safety.

In Phase III trials, the study drug or treatment is given to larger groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

Valeant plans to enroll 1000 patients each in two Phase III studies at 80 sites around the world. Recruitment for the first trial is underway, and patients are expected to begin enrolling for the second study in mid-2004, the company said.

Comparable Objectives
As in the Phase II trials, the larger studies will compare Viramidine with ribavirin, each in conjunction with pegylated interferon. PEG-Intron will be used in the first Phase III study, while the other pegylated interferon, Pegasys, will be tested in the second trial.

These final studies, typically the last in the drug approval pipeline, are designed to treat patients for either 24 or 48 weeks, depending on viral strain; take patients off therapy for an additional 24 weeks; and then determine the percentage of patients with undetectable virus in their blood, as well as the incidence of anemia during the course of the entire 72-week study periods.

Valeant refused to comment on the trials, pending their outcome.

1. European Association for the Study of the Liver (EASL) 2004. The 39th Annual Meeting. 2004 Apr 14-18. Berlin, Germany.
2. Digestive Disease Week.  2004 May 15-20. New Orleans, LA.
3. Mayo Foundation for Medical Education and Research.

John Martin is a long-time health journalist and an editor for Priority Healthcare. His credits include coverage of health news for the website of Fox Television's The Health Network, and articles for the New York Post and other consumer and trade publications.

[CARUU]

I am (was) genotype 2a, VL 140,000.  I've been on 800mg of Ribaviran the whole time and had to reduce the Pegasys to 75% of dosage for the last 10 weeks or so because my ANC has stayed in the 600's.  I was undetectable at 12 weeks and will get the results of the RNA test in a few days.  If I'm still undetectable, then I guess the real test is in 6 months, when we determine if it's still gone.  The doc hasn't talked to me about extending tx, or even about what would happen if the pending RNA test came back positive.  So I'm waiting to hear and hoping it's good news.  I hope you are able to stop tx soon and that you have a good outcome!  caruu

[litecloud]

Am glad your feeling a little better, the prayers from all of us helped "my little buddy" awsome !!!
Everyone: I agree with Chev I  also have a loving boyfriend and family and 1 close friend that knows, but still it is not them battling for there lifes it's us.
This is more of a like an AA question but since alcohol is part of what we have to stop, I will ask it.
I had to stop drinking just like many of you, for those with partners that drink, how has that changed your relasionships.
I have come to see what a person under the influance is about, how they slurr and change subjects in the middle of conversation withoout knowing that they are doing this, it is funny how annoying it becomes. When people drink together they don see any of that.
Am having a bit of a problem with this. Have any of you ever had this happen?

[Fubarcat]

I stopped drinking as soon as I went on tx 12 weeks ago. I never considered myself a big drinker.  Maybe two glasses of wine a night at most.   My husband is an alcoholic.  I now get more annoyed with him than I used to and I'm not sure if it is because I'm not drinking and his drinking annoys me, or if I just have little patience for ANYTHING right now due to side effects of treatment.  I love my husband and we are working together to try to get him into recovery, but I have very little tolerance for drunks these days.

[cuteus]

With some of these drugs you exchange one sx for another, if it is a more refined version of reverse transcriptases maybe it won't have this sx:
Toxic Effects of Nucleoside Reverse Transcriptase Inhibitors
from American Journal of Clinical Pathology, 2000 article.
It mentions hepatoxicity as a complication.
I guess we'll find out, if the complications are more do-able than present tx in the next phase of trials.

[Fubarcat]

It's not all bad.  He's a good husband and when he is sober, he is my knight in shining armor.  He is trying very hard to overcome his problems in addition to helping me along the way.  We'll work it out, I know it.  But, thanks for your thoughts.  I "lurk" every day - sometimes 2-3 times a day, but only post occasionally.

[honey1616]

Wow...that sounds promising and no anemia!!  Yeah!  How are ya?  That is great for those waiting and for those that don't clear on peg/rib!

[mojosmiley72]

I have Hep C and have started treatment 4 weeks ago, anyone else on treatment that I caN ask some questions, like what do I do with the real bad headaches, do you get them.I would like to give my email out and chat with someone who can help me.
***@****

[mojosmiley72]

I have Hep C and Hypothyroidism, not just Hep C

[meki]

Mojo --- this post is soooo very old... Please post a new thread in the main forum... OK?

This might not get answered lost in here.

Have a splendid day!


Meki