Thanks cuteus , I went to the link and my symptoms are very similiar. I will ask the doc to run a check. You guys are definitely some smart cookies ,seems like you may know as much if not more than the docs - So glad I found this forum , much needed help and useful info - thanks a bunch to all.
There is no way I believe 1%! If you look at this site you'll see it seems to be a bigger problem than that. It looks up to 20% in one study. It also seems it happens often just shortly after tx. I have a friend that happened to.
http://www.janis7hepc.com/thyroid.htm
I agree that it is abigger issue then they make out. "They" say that fewer than 1% of people get permanent thyroid problems from the treatment......and I DO NOT BELIEVE THEM. One problem is that by the time abnormalities are picked up in a blood test, it is too late. For many of us, one they thyroid has "gone", it has gone irreversibly. Even monthly testing wouldn't prevent that.
levels on the lab PW. I do wonder what levels our docs think is high! I also do have to say this whole extended tx thing is also new to them also. The problems of being a ginnypig! I did get my next labs done at a different lab at the same hosp and normal levels were not indicated at all. Weird but I'll ask my reg doc next time I see him.
Cuteous I get the same thing often from my hep rn about the insurance not wanting to pay but my insurance has paid everything ordered by the doc and never balked once. I guess I just don't think these people can actually remember the specifics of each ins. company and just qoute this often. If your TSH level has risen I would get another test in not to long of a time and see what that result is. I would even see where the info is that over 3 is high and give that to your RN. It's very hard to be the first ones to do things since it's all so new. I just wish I knew to check more often, now you do, so I hope you do. I bet there is a thyroid site where people with intereron induced thyroid problems visit. I will check that out more soon. I am just overwhelmed with all my health issues right now and my job is so busy right now. Lovely!
Ameribrit, Thanks for your kind thoughts. (You allways cheer me up). One problem is once you are on meds for thyroid it takes weeks for them to kick in and any adjustment takes weeks to kick in also so getting a test to quickly would not give accurate info. I'll be getting another next week.
I am glad this is being discussed because it seeems to me this is more of an issue than I ever knew. It may not help me now but maybe it'll help others. Thanks to all involved. LL
Ok. I called and the RN is mailing a script for the TSH, she said that they keep track of the T4, that this is their main indicator of thyroid trouble. I wonder if all hepatologists treating hcv only look at that marker? elevated T4 can mean hyper, and low may mean hypo, but I am looking at the subclinical hyper and hypo and T4 is normal in both and only TSH changes, non treatment of subclinical condition is a controversial subject.
My practice only does the test every other month if within normal consistently, regardless of length of Tx.
Could you consider demanding a prescription for another TSH test from your Dr. and then fight with the insurance company later? I was sad to read of your surgery complications, your post was hard for me to read, I can't imagine how hard it must be to live. The last thing you need is to kick yourself later for not demanding that thyroid test. Do it Lalya, take care of you first!
Best of luck to you.
humbled
have you been tested for cryoglobulinemia?, it affects the hcv infected. It damages the kidneys and blood vessels. do a web search on the condition and see if symptoms match.
Hypothyroidism;
I found this in a 1999 article on hcv and interferon:"A comparison of interferon-treated patients with hepatitis B or C clearly demonstrated that hepatitis C and not interferon treatment was the predisposing factor,(to hypothyroidism).
The short article is at: http://www.ikp.unibe.ch/lab2/HCVTHYR.htm
after 12 months of tx the autoantibodies went from 10% to 45%...aarrggh.
I`m 42 yrs old F {HepC} not taking any meds at this time taking lots of vit./ on a strict diet. Have been told my kidney`s are kaput. Liver panel was normal. Bun/Creat 9- norm 10-20 auto Eos 0.5 -norm 1-5%. Fatique hits me hard after little or no activity , has gotten much worse over time. Extreme, constant lower back pain ie: kidney`s. I wanted to ask if brusing is normal for HepC, I have been getting numerous brusies on the back of my legs & upper thighs for no apparent reason. Also ant bites on my legs are brusing too , anyone else have this experience? Thanks for any input.
Your numbers look great for being on tx for the extended time. And like you said your platelets just a tad low but nothing to really worry. Looks like you are in great shape and are you finishing up now?
I went back to my bloodwork as far as 1998 when TSH was 1.95. After tx started it has been anywhere bt 2.0 to the last one of 3.79.
The new RN at the practice said that they can not justify to the insurance company a monthly thyroid work up if it has been within range all along.
I won't get one until wk 8 from the last one. What bothers me is that if I am doing extended tx which increases the risk, my mom has thyroid disease, the last reading is 3.79(on 6/24, up from the 6/7 reading of 2.16), shouldn't they be concerned? I am. Unless meal ingestion affects the readings somehow? does anyone know if fasting gives a different reading? I am never on a fast for my bloodwork. I am wondering if I should call them and ask them to include it know. The RN was specific about the insurance company approval, but they have approved everything so far with no problem, I can't see them not doing now.
I pulled my lab test and the lads normal range is 0.35 to 5.5. That was the first time I was over a 2 and I was at 5.14 and the hep rn said I was on high normal range. Makes me very mad now because I was calling them at the time compaining of increasing sides. Two weeks after that test I called again because my brain fog and some other sx''s were so bad and I was told "my labs look ok" So the next lab I had them add TSH again and it was 62.47. I could have stopped tx at the 5.14 level had I known or more like if they had known. since I had already done extended tx for some months. I wonder if it would had returned to normal if I had???? Is that the reason I'll most likely have to take these dam pills all my life. I am often pretty mad about this. It's fustrating! They then put me on 50 levoxyl and after my nest TSH showed 7.7 it was increased to 75 but that was 3 weeks ago. I am still having some of what I now call thyroid sx's rather than tx sx's. I'll go in this week for another lab. I guess from your post I really should look for a endocrinologist? Maybe they can fill me in better on the "normal ranges" as it seems my hep docs aren't up to date as they should be. (and REV they should have been on this don't you think?)
I did have some antibodies, my hep doc said, but I don't know what that means. I did read soemthing about autoimmune and that means possibly it could go back to normal? I am pretty confused on that part. I feel like I am back in the beginning of HCV Dx and trying to learn everything. I will try the website and see what I can find. I am just to sick of this.
I am also dealing with a a post operation complication that's looking to be a big challenge. It seems the operation was good but the anestesiologist may have screwed up my voice box and perhaps permanently. I'm a sales rep!
Wow, guess I got on a roll. Sorry, I am just very fed up and hate not knowing. Thanks for the info. LL
Thanks for your post, I've found that nearly every side effect to be temporary if you can just wait them out. Hopefully this weakness will follow the pattern.
My husband is also 3a and is 26/48. About 3 weeks ago he had some of the most extreme fatigue you can imagine. Like you, he was only able to stay out of bed for a few hours per day. Maybe work 5-6 hours and then he went right back to bed. None of his labs showed any reason for it. I don't have to tell you it scared the hell out of me. I called the doctor and was told "these are some very hard meds". Well, no ****! Anyway......this lasted about 2-3 weeks and he is now back to "normal" as he can be on the meds. I do know there is a flu like bug going around and I think he had it. I know I did but I was only tired for a couple of days and not feeling very well and I bounced right back....it took him a while longer. He even ran a fever for a couple of nights.......that scared me the most I think. I will keep my fingers crossed that that is what is causeing your extreme fatigue. Maybe you will wake up tomorrow morning a be feeling a little better. Oh ya, he is 48 years old, he just had a birthday on the 24 on July. Good luck to you.
I assume we are talking about TSH levels. When I was on 50mg of thyroxine a day, 3.5 was still considered too high (although within "normal range") and my dose was increased. 7.7 is high, and means that your thyroid is underactive. Your doctors will probably put you on thyroxine, if they haven't already.
There is disagreement in the medical community over what constitutes 'abnormal' in the THS ranges. Recent articles are more and more in favor of treating what many doctors call MILD hypothyroidism...usually meaning TSH in the 3.5 to 10 range. The range cutoff point recognized by the Endocrinologists in the US as of 2002, is around 3.5, but many will tell you that even that is really not 'normal' compared to the general population. Many docs still the old 5.0 or so, top of range. MOST normal people's thyroids test in the 0.5 to 2.0 range, with very small numbers testing above 2.0. Or in other words, the Bell Curve distribution for normal thyroid function has the great majority of normal people in the 0.5 to 2.0, under the large portion of the curve. What this probably means is that when TSH levels start to elevate above 2.0, especially when above 5.0, you are seeing the beginnings of hypothyroidism...and often the symptoms can be as severe as with much higher TSH levels. It means the thyroid is struggling, and not producing quantities of hormone necessary to normal functioning. Another issue is whether you have developed thyroid antibodies...TPO test, and one other thyroid antibody test (which i cannot recall) will tell you this. If you are positive on either test, it is an even stronger indication that hypothyroidism is in progress, and will probably continue to worsen over time.
You can run searches on google and yahoo for articles on: "Treating mild hypothyroidism", and similar wording , to get some contemporary points of view. My endocrinologist started me on synthroid after tx when my TSH had settled back to about 5.8, (from over 8.0 during tx) and has a goal of getting me to around 1.0 on the TSH. I just increased the synthroid from 50 mcg. to 75 mcg. since my 6 wk. TSH test was 3.0 .... not good enough yet. I am feeling some good effects already!!! The thyroid issue MAY be very important, as far as sx!!! Pursue it fully with a knowledgable endocrinologist!!! Go armed with articles. Your current TSH indicates definite mild hypothyroidism, by all standards...and treating MAY bring big benefits. Also, get the antibody tests!!!
Doubledose
Skiff, maybe your doctor can give you something different. Some people can't tolerate certain AD's. I can't take Paxil, so they put me on Effexor. I had no sx with that at all. Paxil made me crazy. Zoloft is one AD that you can stop at any time without weaning off of it. They give it to some Pregnant woman in their 8th month to alleviate PPD. They put my daughter on it and when her daughter was 7 months, she just stopped taking it. So, ask to try something different.
Anne
Symptoms started about 9 days ago, Zoloft was doctors response. He's been trying to get me on AD's for years. Thought I'd finally give in just so we can get that issue off the table. The zoloft will actually do me some good I'm sure, however, I continue to sink and I need to find out why.
The fatigue may just be from the Zoloft, that you started taking.. As soon as I took the Celexa the Dr ordered, I was like a Zombie.. Sat on the couch, barely able to do anything, and the headaches where BAD!!! Talk to Dr, and see what he thinks. They put me on Effexor XR, and so far I am just slightly fatigued.. If all your blood work came back ok, and the Zoloft is the only change you have made, I would suspect that.. Good luck, your close to the end so keep up the fight..
just got my viral load is 12.000.000 high hep c
On the thyroid issue. You mentioned you are still high at over 3. I thought 5.5 was the high end of normal range? When my thyroid was going and I was complaining of extreme sx's (including much more fatigue) my hep RN said I was barely over 5.2 so I was in the normal range. Any further insight on this? My last test I was 7.7. Thanks LL
If you are genotype 3a, may I ask why you are having to do 48 weeks?
I was also 3a, so did 24 weeks as is usually the case. Certainly the second half of tx was much worse. I did get thyroid problems but they didn't show up in the blood tests until I had finished.
I'm 55, male,1b. It was at about week 36 that I really started to feel that way. My blood work was all in the margins also. I felt like lead man and struggled just to do anything plus I had bad aches and pains it all affected my attitude in a bad way.I had to spend a lot of time in bed and couch til my house felt like a prison.
I'm at almost 1 month post 48 weeks and am feeling much better. I would PUSH the doc though just to be sure. Hang in there you will get thru it. BTW what are your WBC and RBC counts.
dh bill
I agree with you - keep searching for some answers.
Modafinil (Provigil) can be a tremendous help to keep functioning. It may not have you doing handsprings, but perhaps it can help see you through this difficulty.
God bless! -Michael
the spine sensation you described reminded me of some comments made by some forum members on two posts from 7/29, one by nolee and the other by sch02127, check them out again and see if they resemble your symptoms.
best to you