Shot 5 and still alive

[krustyj]

Thanks to all for comments last week reguarding school...I will
play it by ear till august...Got blood back today...CBC all normal.slight dip in wbc and rbc..platelets actually went UP...
LFT also looked good,best i had in years...AST normal alt ..slightly elevated...the rest normal...(P-Kid tryed my damdest to get Dr to do PCR at 4 weeks,offered to pay.he said save your money.your doing just fine.)sx minimal still, in fact less than less....Thanks to all of you and I pray for your full recover. GOD BLESS Charlie

[cuteus]

Ms Vic Verizon! that is a knockout pic. what extra wt?
sleeping beauty's snoring was keeping gray dog awake?
you have a beautiful smile.

[Plutonium-kid]

Hello to all,

I'm really surprised by your Dr's refusal to perform a PCR assay. Since it's an indication of whether you have attained an EARLY RESPONSE, which in turn indicates your response to Tx. Pls continue to persuade this Dr & I'm sure he'll see the importance of this assay at this stage. In addition, isn't Doc interested if his prescribed dosing is OK....maybe you should REDUCE...MAINTAIN.... or INCREASE your dosage.
Essentially what I'm saying is:
Your PCR value is a reflection of your body's reaction to this Tx.....BOTH you & this Dr have the RIGHT & OBLIGATION to know what's going on. Follow up with additional opinions & get advice from other professionals. I'm aware that PCR costs >$250 however, your HEALTH is worth much more.

Pls insist that your RIGHTS are respected...since it's your BODY.

Good Luck,
PK....

[gonagetbetr]

I am so glad to see that not only are you "still alive" it looks like your numbers are great and you are feeling good
congratulations i am sending you wishes for clear and then svr hold on ready.... did you get them?  good
keep us up to date with how you are doing
by the way what are you doing the peginterferon or pegasys and at what dosage I am sure you have said but im curious as your platelets are up. I want mine to go up too.

[TnHepGuy_]

<u>krustyj</u> - sounds like things are going well. Good to see that you blood work is holding up well, too. Continued best to you.

<u>honey</u> - you had been kind enough to ask about my MRI results on my hips. Well, I just heard from my doc's office and the results were negative, thank God - meaning that the blood flow to the hip and femur areas is fine, showing no signs of necrosis. WHEWWWWWWWWWWWWWWWWW!!!

Though I guess I probably get to put up with this chronic pain the rest of my time on tx. Just another 'adjustment' on the road to SVR!


TnHepGuy

[mikesimon]

Great news on the MRI. You really don't need anything else to worry about. Mike

[Honey15637]

Krusty,,,Great to hear you are hanging in there and doing so well!!

TnHepGuy,,,Wow,,,I'm with you as that is a relief!!  Ok,,,now you are back to the original battle right and got that out of the way... I wonder if the tx is causing that much pain for you or could it be tx is just exaggerating what would be a hep c symptom!  Because I have noticed that alot of people are having some severe bone and/or joint pain.....Anyways I'm so happy that everything turned out good for ya!!

[Amerabrit]

Krusty:  so good to hear you are doing well and fabulous news that your sx are non-existent..be well.

TNHepGuy: Thanks so much for sharing your MRI test results, I am so happy for you:)

[gonagetbetr]

great news on the mri
The pain that you are having, is it in the joints or bone or both?
I have seen alot of ppl that say that they have joint pain while doing tx.
hope that you are getting some type of relief as far as the pain from your doctor. I am sure he/she just does as you tell him lol lets face it they will probably consult with you soon . :0)
So where are you at in your tx now? what week etc....
be well
You sure made me crave italian the other day as I grew up in Boston.
I think tonight will be pasta night at the house

[layla]

Man I just stopped at the pharmacy to pick up my 18th month, and last month of tx. I WAS pretty excited. I got home to hear a message from the docs. "Call us with your pharmacy number. We got your labs and you need thyroid meds". Youch. I called back but couldn't get through so had to leave a message to call me again. It doesn't help I am in allot of pain today and had an intense work day out on the road. I would appreciate any help with this. I know some other here have had problems with this. Thanks. LL

labs
T4 FREE  0.41
TSH   62.477
WBC 2050  
RBC 3.2
HCT 33

Anything else low or high is within a point or two.

[Ambush]

Yeow....looks like your thyroid went hypo on you.  You almost made it through the 18 months, too.  Mine went at 9 months ~ TSH was over 77.  Some of the symptoms I had were constipation, severe cold intolerance, very sleepy: sometimes sleeping 18 hours a day, swollen face, mental confusion (much worse than the usual brain fog), speech was sluggish and slurred, very dry skin.  It takes a while for the thyroid meds to bring the numbers back to normal and the doc may have to play around with dosage until he gets it settled. Then, it's just a pill every morning.  Hypothyroidism is not a threat if managed with hormone replacement.  I'm just hoping that our thyroids were a small price to pay for SVR!  (I picked up my last box of meds yesterday - box #15)...feels good, doesn't it?  Good Luck with the thyroid, and let us know how it's going.
ambush :)

[layla]

Scott I have been tested regularly and have not experienced any problems.

Ambush Since I have not spoken to anyone I am not sure if this would be permanent. Do you know?  I do know a person who had problems and things did go back to normal after a few months but then I've seen others with permanent problems.  I don't really know what to think and the docs are gone home. I didn't realize I called them back after 5. I don't have the symptoms you mentioned and my sx have been very mild lately except for my jaw problem but that is clear what it is. Thanks for your response. LL

[layla]

Did you stop tx at that time? LL

[Ambush]

No, I didn't stop tx.  I am on week 56 of 60.  July 10th will be my last shot.  I was sent to an endocrinologist to check out the thyroid and he said it was pretty much gone, so I'm assuming that my situation is permanent, although I have also heard of minor thyroid problems mending themselves.  I am now on 112 mg of levothyroxine (my third dosage change). I don't know yet if dosage will change once the tx meds are done. I need to ask.  My original doc that I started with in May 03 told me that my thyroid could become a victim of tx and said that it was easily remedied.  There are no ill effects of the thyroid meds at all.  It is basically a hormone replacement and once the dosage is settled, I think only a once a year TSH check is required.  My symptoms were very confusing because at the same time my thyroid gave up, my HCT plummeted and was severely anemic.  Personally, I think the docs should monitor TSH a little more often, but then, they don't ask my opinion :)
It's a tiny annoyance to have to take a little pill every morning compared to what we've been through to fight HCV.  If you can get through 18 months of Peg/Riba ........one little thyroid pill = piece of cake!  Hang in there and keep us posted.
ambush :)

[Ambush]

I suppose the time to destroy a thyroid would vary just like anything else.  I've always wondered if my severe anemic dive was pushed by the thyroid trouble.......or was the thyroid trouble pushed by the worsening anemia?  Related?  Unrelated?  Who knows.  It just all bit the dust for me at the same time and after the first 9 months of tx being pretty much trouble free, I kind of feel that one problem escalated the other.  The proverbial snowball........?
ambush :)

[layla]

I have a friend who had thyroid problems at 5 months so I don't really think it's due to extended tx just longer chances of it happening. Who knows, but with what I knew then and what I know now I would do things the same. I actually made sure to have my thyroid tested more after the first 12 months on tx. I have had it tested each month the last 3 months and it was fine. I can say this, if there is any chance it is temporary I will most likely stop tx now but only becasue I think I've done enough at 65 weeks full tx with low labs and VL to start with. I have to say it is one thing, thyroid problems,  that has been skating through my mind on tx. I'm thinking Britgirl will let us know when it happened with her when we are on her time schedule. We just talked about this within the last couple days. Weird.... I am very tired of this. LL

[layla]

AND I am in denial. I think it's big fat mistake! I feel fine. LL

[layla]

Interesting. I did test psotivie for RA before tx but saw a RA doc and he and my hep doc said it definately was not RA. I did talk to my hepRN in April (you know who) and complain to him twice that I was having allot of symptoms like menopause but that was the last two months and I did have thyroid added to my labs, which were fine, but then the symptoms subsided. The most severe symptoms were hot flashes and I was having allot of them but I don't have them now. In April TSH was 5.1. LL

[lookin-up]

You might find it interesting that in my 9th month of hcv I developed hyper-thyroidism & they sent me to a thyroid specialist who suspects that it's a sx of pegintron & prescribed 2 daily pills..  I quickly shed 22 lbs without changing my eating habits & am still loosing weight.  While I'm not complaining of the weight loss, my practitioner said that she has only seen the "hyper" 2 times in her career.

Any comments?
Penny

[lookin-up]

Oh, and thanks so much for the "hypo" site - my husband just learned that he has it, altho he is not hcv.

[tina-b]

The thread was closed so I hope you see this.
I just wanted to say congratulations ! I am very happy for you!

[tina-b]

I am so glad your MRI was okay. What a relief that must be for you.

[cuteus]

sorry to hear about the bad news, were you on full doses of meds throughout? also, is there a reading for MCV in the blood work? mine came out of range and I was reading a reason could be thyroid problems. it does look as if anemia and thyroid disorders are related. were you treated for anemia?

I am extending also and am getting the levels checked every month, when someone mentioned more frequent testing would that be more often than monthly? There is a hx of thyroid problems in my family so naturally I am very worried.
I hope yours is not a permanent issue.

[layla]

Thanks for your thoughts. My MCV have been low but allways within 5 points to normal so I was never treated. My med dose was 180 pegasys 1000 riba for 14 full months then I went to 800 riba as the doc felt with my weight, 123 lbs, it was enough..I have to say I did feel a world of difference after about 3 weeks of the lowered riba. I also gained 5 lbs. My doc did email me last night to let me know their was a lab issue on my thyroids and his nurse should be calling me, which he had so I expect to talk to them this morning. He is a hepatologist within a good size clinic with numerous very good hepatologist and GI's on their staff. He also said most times it is temporary but I need to be on thyroid supplements at this point. I have seen people on forums with this problem but have become friends with a few who had it and it has turned out temporary but it took awhile to get back to normal so I just hope that is my case. Like I said hopefully I'll know more later today.
In hindsight I do believe my recent increase of menopausal type symptoms were a clue that this was happening. I even thought perhaps it was due to thyroid numerous times. I called my RN and was told it's just normal on tx but I wish I had emailed directly to my doc my thoughts on this and asked about having my thyroid checked  every 2 weeks. In hindsight, oh well! I was getting labs every 6 weeks at that point. I had read somewhere that on extended tx most labs stayed the same for the extension so I didn't worry to much as mine had allways been so close to normal. With the thyroid problems in your famliy I would definataly ask for more frequent labs. I hope you have a good doc and can contact him easily. I woulds still do extended tx. no question of that in my mind. If it's any help I did find tx easier to deal with as time went on.
Why are you doing extended tx? What is your planned extension. Are you on full dose?
I used to love going to LI for a weekend in the 80's. So much fun! LL

[cuteus]

TY for that input, and...it would give me a good excuse to clean the house if you or anyone else coming to the area want to spend a couple days by the beach. i am about 5 minutes from Robert Moses state park, my favorite, and got my Empire Passport already...so bring the sunscreen!
I am extending, full dose so far, 1000mg riba/180mcgpegasys, for 72 weeks. I had a low vl of 374,000 that went to 125,000 at 4 wks of tx and to 5670 at wk 12. All the studies I read point to extension if you are not evr and geno 1. no guarantees of svr, but a better shot at it, right?
I will definetely stay on top of my bloodwork, Ty.