Thyroid Questions for those on TX and finished TX. Discussion

[DoubleDose]

Since we have been discussing thyroid function recently, and how therapy affects thyroid, and also how thyroid abnormalities affect our functioning, I would like to ask for feedback from those of you currently on tx, and those who have completed tx (both SVR and unsuccessful tx).
1.  What are your current TSH values?  Note that TSH is considered the most accurate test of Thyroid function.  Normal range is considered to be from 0.3 to 3.4 by some medical groups, and 0.3 to 5.5 by others.  Anyway, the HIGHER the TSH, the more likely one is suffering from HYPO-Thyroid problems.  In our cases, probably auto-immune related Hypo-Thyroid.

2.  How are your side effects, or after-effects (if finished tx) currently, in light of your TSH levels?  What has your doctor said regarding need to treat, at your current level?
Are any of you seeing any connection to high TSH, and your sx?  Like increasing fatigue, lack of interest in physical activity, drier skin than previously, eyebrow loss, gritty eyes, constipation, aches and pains, etc?  I realize much of this may be considered tx related, but it may be more intense, or increasingly problematic during periods of rising TSH.  

3.  Have any of you ended tx and had high TSH for more than a few months, and then had the TSH levels go back to very normal levels, like 1.0 to 2.0..... not 4 or 5,....or 6..etc?
Autoimmune thyroid issues may be causing lots of tx and post-tx problems, from what I am hearing, and I would like to see how it all relates, from our own members' experiences.

Thanks for any thoughts & participation!!

[cindee]

Hi, I think you did the right thing going to an eye doctor. While I was on tx, I did 48/48,I did have some blurred vision, but it cleared up on it's own. As for stopping tx.....I was also undectable the whole time and I was soooooo sure I would clear. WRONG! I felt like something wasn't right with my health and talked my liver doctor to do a 4 month post tx blood test, he always waited to do a post blood work @ 6 months. Well he "let" me do a 4 months post tx blood test and....I had relapsed. I go to a hepatologist on May 21st. If your doctor won't let you continue w/ tx.....and you want to finish...I'd quickly find a new doctor....a HEPATOLOGIST, who only treats hep. It won't hurt to get a second oppion. You'll find here in this forum MANY heppers change doctors...sometimes more than once. I want to wish you the best, and only YOU know how YOU feel. I've never heard of anyone going blind on tx. If I'm wrong would someone,

WHO IS ON, OR HAS BEEN ON TX. PLEASE CORRECT ME!!!!.

You will be in my prayers, Much Love and MANY PRAYERS, Cindee

[honey1616]

Hi Debbie,,,I read not to rub into scalp and usually don't but wow...do I ever have some flat hair LOL  I might try something new like you and Galen were talking about just to give me some volume. As far as the rash...I'm getting that also come and go on v-neck also, back and shoulders. So not sure if the nioxin caused your neck break out or if its just the riba. Hope you are feeling good these days other then these breakouts!

Chevy,,,I know what you mean about slow hair growth, I usually get trim every 6 weeks and only had it trimmed once in 3 months.  Its just not growing at all! In fact, in back of my hair,,,looks almost like it has been breaking off because its shorter. LOL  Cute huh?

[DebbieDo]

I had the same reaction to Nioxin.........burning itchy scalp....it was terrible.....How many times did you use it?  I use it about 5 or 6 times.......im glad i didnt buy the large sizes of everything.  I just bought the kit........lol......My head is feeling better after 2  shampooings with regular shampoo...Hang in there.........

\Chevy........the only reading that i can recall about my hemmogl was when i first heard after i started tx is was 10.9 and then it went next month to 10.3 and then last time 9.3
Not sure if the 10.9 was the very first...i will find out this month at my Gi appt...Must feel good to be almost through......i feel better since they cut the Riba back to 800 but i dont know if this is a good thing......i know that max doze is 1200 and they sort of base it on weight......im overweight so i am concerned about this, although i feel much better now....Take care and have a great weekend.....Deb

[DebbieDo]

I have the rash too.....i have it in the V Neck area .......also on my left arm and on my back/shoulders.....occassionally i get a weird looking dry patch, aveeno anti itch makes it go away......i use it too during  the itchy times.....

I read the directions again on the Nioxin and it read dont massage your head...........maybe i did that........i know i did, i wanted to penatrate my scalp.....lol........and the treatment condtioner i did the same way.........who knows, but not sure i will try and use it again anytime soon.........my head was itching and burning all the time, nearly drove me nuts.....lol......wondering if it was the nioxin that gave me my neck rash or not.......

[susan400]

I've been fortunate in never having any thyroid problems with any of my treatments.  I did have the Nioxin problem though.  It burned my skin on my scalp and on my face.

I also wish that T.H. who posted above would not always be trying to act like she's a doctor with her advice.  She doesn't have M.D. behind her name.  I thought we weren't supposed to be giving medical advice on here.  

I follow my doctor's advice and he thinks that as long as I'm not having any serious effects (i.e. other organ problems, life threatening, etc.) that it's fine for me to keep retreating.  He keep me closely monitored all the time with labs.  If someone doesn't agree with my God-given right to retreat, that's their business, but it's not going to change my decisions at all.  I base my decisions on my doctor's advice, my own sound judgement and free will and God's opening and shutting doors in my life.  What I don't do is base my decisions on what somebody on some support group board on the internet thinks.

Thanks for letting me unload the frustration here.

Susan400

[honey1616]

I had last week on my bloodwork..them pull up tsh since I hadn't seen on other lab work of mine.  Hopefully...I will get this next week and know what that is because I have been wondering if it is in normal range.

I started using Nioxin from week 1 of tx and that first couple of weeks,,,My scalp was burning alot but I continued and now I don't notice any problems and so far...no hair loss at week 16 so hopefully...

Also,,,riba rash  I always heard everyone talk about it and was thinking a red small rash but I keep getting bigger red spots on my arms and then they itch and then start to crust over but takes forever to heal!

[TnHepGuy_]

It's good to see that your bx was as good as it was, and that it appears that your progression may have slowed and/or stopped.

You inspire me with your strength and determination.


May God's blessings and mercy be upon you.


TnHepGuy

[DebbieDo]

Hi there good buddy......A couple of weeks ago i developed a floater which is, i think, the same as a cotton wool spots.  I freaked out and thought i was having major problems due to TX.  I went and got examine by my eye doctor and things are fine.  If you are over the age of 50 floaters are very common.  They sometimes disappear or settle down.  Mine was so bad, and now its very suttle.  He gave me a number of different things to look for  that could be serious.  I woiuld suggest go have your eyes examined.........I am will do #20 Monday.....Let me know how you are doing.  Deb

[TnHepGuy_]

I'd say the most important thing would be to have an opthomologist examine your eyes - right away - and let him/her determine the current status of your eyesight. I'd be pushing for 'right away' for two main reasons - 1.) to see if any damage has occured to my eyes and, 2.) if the eyesight is deemed ok and you are cleared to continue - you will want to get back onto tx as soon as possible. The general belief is that the ribavirin is most important for the first 20 weeks or so - whereas the interferon is most important in the long run.

If you can get into see an eye doc immediately and are cleared to go back on tx, I'd definately be pushing my doc to extend - based upon missing the interferon. The pegylated interferon's effectivness is designed to last over the course of one week. While there remains some residual interferon in your system, it may not be enough to keep the virus suppressed. And given that you are in the tougher-to-treat category since you are a 1a - retesting (via PCR) to check viral levels and extending tx would be things to bring to your doctor's attention.

Did you have a pre-tx exam done as a baseline?


TnHepGuy

[Luke307]

Thanks everyone, I neglected to mention that I have seen an opthalmologist and he is the one who leaned toward keeping me on treatment.
Thanbey ,what in the world is that about? Excuse me ,I'm sure you mean well, but are you the leading expert on Hep c treatment and cotton wool spots? I was asking for advice and not to be further scared out of my wits. I was having some very scary symptoms before I started this treatment. I'm a little baffled as to how you can make such statements with such absolute certainty and also,if you don't have facts 'why'? Can you please show me a study? I certainly hope you're not correct.
luke

[thanbey]

Contimuing treatment once cotton wool spot develop will lead to reduced eyesite and probable blindness.

Since people make decision all the time to continue treatment and risk other organs and functions, you might not care whether you go blind and may want to continue to treat at any cost to the rest of your body and may wish to learn to live as a blind person.

Surely that is your decision and not the doctor's. You might have trouble finding a doctor willing to risk malpractice and medical ethics to help you continue, but I am sure if you search hard enough, you will might find one.

However, in my opinion, you have been given good medical advice and should take it. Your cotton wool spots may go away and your eyesight may be unaffected if you stop sooner rather than later.

I hope this helps,

thanbey

www.hcop.org

[Luke307]

Tnhepguy,
Thanks.I did have a baseline done and they were clear at that time.
Chevy,thanks a million. Thanks Audrey, very helpful...
Debbie,how are you, I hope you're still doing well.

Now I'll have to hope for the best and let the doctors decide what to do with me.
luke

[DebbieDo]

Hi there sweetie, sorry to read about your eyes ...please keep me posted on how your eyes are doing.......Like i said i had the same problem.....I will be doing #20 Monday......I'm feeling much better  the last couple of weeks.  Doc cut back my riba to 800 a day.......cause hemog was low 9.3  I dont really like this.....i will discuss this further with him  on the 24th.......some say do procrit......I am undetectable.......so i dont know....all else seems to be fine.....i feel somewhat normal this past couple of weeks......whatever normal is........I dont have that major fatigue that i have had in the beginning of TX..I had some itching problems going on. I bought some nioxin for my hair and i had an alergic reaction, it made my scalp itch and it felt like it was burned, i only used it about 5 times everyother day....not anymore and the itching is gone..........things we go through......I wish you would post more .......i would like very much to know how you are doing......I dont post too much, but, i do read the posts daily..........God be with you my friend........Deb  :)~

[audreywald]

If you take 80% of your meds, 80% of the time, it is not supposed to effect the outcome from your meds. Sometimes people have to have a temporary reduction of pause.

[Luke307]

Hi everyone. I'm a bit worried about my situation.
  My doctor stopped my pegintron for at least a week because of 'cotton wool' spots in my eyes. I have one spot in each eye. He assures me that stopping  won't harm my treatment since I'm undetectable. Can anyone reassure me about the wisdom of temp. stopping tx, or the wisdom of continuing? I'm a 1A at week 23 of tx. Thanks

luke

[honey1616]

Yes...you should definitely get into eye doctor right away and the sooner...the better. If your eyes are ok...you can start back on tx and one week should not be a problem being off meds.  Good luck!

[TnHepGuy_]

I'm glad to hear you have already seen an opthomologist. Please let us know what you learn next.


As far as your other concern - I will repeat a post from a few days back addressing the same subject:


<i>One of the biggest 'bewares' one can have when dealing with internet resident 'experts' - is to look at just where the person who is giving the advice's self-interests might be.

There are all kinds out here in the internet help forums. You'll even occasionaly run into one or two who don't have the disease, aren't medically trained - yet spend enourmous amounts of time and energy touting themselves and putting forth their own version of a 'crusade' on multiple forums and web sites.

It's always good to ask the 'why' questions - especially when determining where a particular individual's interests lie.</i>


TnHepGuy

[honey1616]

I tried to post above and it messed up on me also. I'm sorry that you have had to go through this so many times and can only imagine how hard this is for you!  Life is short and precious...please allow yourself to meet someone that you care for and who cares for you! You deserve so much more.  Good Luck!

[susan400]

Dear Revenire,

I tried to post a comment back to you on my original post and for some reason, which I don't understand, the 'post a question' button never appeared.  

In answer to your question, my biopsies x 3 have all showed progression, in spite of having treated it 5 times!  I agree that in SOME people their liver damage does indeed improve, reverse, etc., but I think that this is more likely to happen in those people who go undetected and stay that way for awhile.  I may be wrong as I am not a medical person.  But, at least in my case, nothing has stopped my progression, or reversed it.  But, I do think that the condition could have gotten worse had I not treated all these times.  I'm a 1A/1B, a mixed genotype with both strains.  I'm not willing to take a chance that this might progress on to cirrhosis, since it already has progressed from Biop. #1 to Biop. #2 to Biop. #3 since 1996. The first bio was 1996, the second was in 2001 (5 years later) and this 3rd now, was (3 years later).  Each one showed further progression in fibrosis.  So, I feel that I have a window of opportunity to keep trying to fight this beast until they come up with something better, so this is why I keep on treating.  I don't like the side effects, but I can deal with them with God's help.
Susan400   bystillwaters.net

[Ambush]

I had a very rough time for 6 or 8 weeks with my thyroid.  I had severe symptoms and was not closely monitored.  I finally (after my 3 requests) had my TSH checked and it was 77.58!  My symptoms were severe facial and hand swelling, slurred slow speech, very slow mental function, constipation, numbness in my hands, arms and legs and generally could barely walk without help.  I was sleeping 16 to 18 hours a day and pretty much crying the other 6 or 8. Every inch of me hurt. I have been on thyroid meds for 5 weeks now and my TSH is down to 6.5 which my doctor says is still 3 times what he wants it to be. At the same time I went severly anemic and started Procrit shots which I think was also due to the thyroid problem allowing my body to crash.  It was confusing at first because like you say, many of these symptoms are common tx sides. But it wasn't long before I knew something was very wrong....I just needed to convince the doctor that I wasn't just whining.  Grrrr.... I can't stress enough to everyone to make sure your doc is checking TSH regularly.  Thyroid problems are not really a big deal as long as they are detected in time but can be very serious if not treated.  I am on week 50 of 56 and am feeling much better now ~ kind of back to my "normal" tx fatigue and sides. In my case, my thyroid is a goner and will never function again, but I have heard that sometimes minor thyroid fluctuations can normalize after tx.
ambush :)