Treatment Ends: And that, as they say, is that...

posted 2000-Nov-12

2000-Nov-12 : After 6 months, the treatment was unsuccessful, but the world hasn't ended (and my hypothyroidism goes on).

On October 11th, I (and my parents, and my fiancée Lisa) went to the doctor to get the 6 month results for my treatment--the crucial results which determined whether or not the treatment was working and should be continued, or if there really wasn't much point to continuing it. As you can probably guess by the title of this page and the heading of this section, it didn't work. My viral load is still high, and the decision has been made to stop the treatment.

Before I go on, let me temper this news with 2 pieces of information:

  1. Going into this meeting, I wasn't certain which answer I wanted to hear. While one result was clearly worse than the other, neither outcome was really "Bad News":
    • If the treatment had been working, I'd have a good shot at getting rid of the virus (yay!) but I'd have to continue the treatment for another 6 months (boo!).
    • If the treatment wasn't working, I'd still have the virus (boo!) but I would immediately stop the treatment (yay!).
  2. While it would have been nice to get rid of the virus, it didn't have to work. I'm not in any immediate danger, and the decision to start the treatment was largely as a "let's head 'em off at the pass" measure and not a last-ditch effort to save my liver.
And the reason I haven't written is not because I've been devestated, but rather because I've been enjoying life and lazily ignoring my duty to update the site.

For the regular readers: remember how I was a little bit frustrated that the measurements from my first liver biopsy weren't in the same scale as those from the later biopsy? Well, I got to experience similar frustration during this most recent visit. Dr. DiBisceglie told me the results of my current viral load count (sorry, I don't remember the numbers or the units) and explained that it was pretty high, and hence the medication wasn't working.

I had come to the meeting expecting to make a decision based on the relative difference between the viral load done at the start of the treatment and the 6-month numbers, and so I asked what it had been before. Dr. DiBisceglie had to rifle through his notes, and when he found them discovered that they were in different units, and claimed there was no way to convert between the two measurements. And I thought, Aargh!! How can this be? Why not? Why on earth can't he convert them? How does he know it's not working, then? Why wasn't he prepared for this?

I would have been more frustrated, but Dr. DiBisceglie explained that while there was no direct conversion between the two viral load measurements, the two were both in the same relative category (elevated but not extreme) and so roughly little change had occured. Further, he told me that, in general, those who responded to the treatment had 6-month viral load at or close-to zero. So even if I had gone from "high" to "medium" during those 6-months, the fact that I wasn't at "very very low" meant that it most likely was not going to work.

But as I said above, I'm not devastated. In fact, leaving the appointment I was (through self-convincing) rather psyched about it. I was stopping 'cold turkey', and was told that the effects of the interferon would go away fully in about a week, and the ribavirin took a little longer (2-4 weeks). (And those numbers were about right in my experience.) Here's why I was psyched:

So I think you can see why this news was not the worst in the world. Sure, I still have hepatitic C, but at this point it's doing its damage slowly enough that I can afford (and was advised) to wait for a better treatment to come along. Sure, it would have been nice to get it all over with and drink wine with Lisa on my honeymoon. I do miss being almost virus-proof: I caught a cold a week after I stopped treatment. And oddly, I actually miss giving myself the shots--it had a nice macho "take one for the team" feeling to it. But I'll get cured at a later date, and for now I'm loving life again.

Reading that, you might think that all the benefits are the same as not hitting yourself in the head with a hammer. ("Why are you hitting yourself in the head with a hammer?"   "Because it feels so good when I stop!") Was it, though a valiant and well-advised effort, all for naught? Did I waste 6-months and get nothing from it? Nope!

I've lost a good amount of weight, and good riddance! While the rebetron therapy diet is probably not for everyone, it sure worked for me! ;) [Though I will say that with far less padding on my posterior, I have discovered that I don't enjoy sitting for 3 hours in an airplane seat nearly as much as I used to.] Oh, and I got to lure my parents out to see my house :)

So boom-done, right? Stop the drugs and all is well with the world?

Actually, no, not quite. The first few days many of the side-effects of the treatment got worse, oddly enough. I had much more trouble concentrating, I had more trouble sleeping, I had less energy. A couple days after that I was acting quite depressed, although I truly believed I was happy about the outcome. At the time I thought that perhaps I was repressing my true feelings and my body knew it, but in retrospect I think the depression was induced by the wacky chemical changes in my body, and not directly because I was feeling blue.

Regardless, a week later and I was already feeling better than I had been before, and 2 weeks later and I was movin' and groovin'. I've started jogging with Lisa and (though I've had no blood tests) I suspect my red blood cells are probably back to their previous level. Just know that stopping your medication may actually make you feel worse for a short period (or at least, it did in my case).

I talked to Dr. DiBisceglie during our meeting about my thyroid, hoping that stopping the treatment might cause it to shape up and stop slacking off. He was doubtful--he said that in his experience, hypothyroidism in conjunction with Hepatitis C was usually caused in people who had a predilection towards it genetically. The treatment may have brought the hypothyroidism on earlier than it would have otherwise, but it probably would have happened anyway, and stopping the treatment didn't fix the problem.

That said, given my ripe young age and desire to make my thyroid do its duty, he was open to me stopping the treatment and seeing what happens. So as not to throw my body through too many changes at once, and so I can see and experience any effects separately, we decided that I would continue to take the thyroid medication for another month (until yesterday, actually) and then stop it. In a month from now (since the thyroid medication, like the ribavirin, takes a long time to take effect and likewise to leave the body) I'll go and get a blood test and we'll meet in January to see how that goes.

I actually decided to trail off the dosage myself (skipping every other day for the last week) under the (possibly foolish) idea that my thyroid would do better being eased into the transition.

The waiting game. I wait for a better treatment to come down the line. And I live my life in the interim. These pages will obviously stay up as part of my site and contribution to the net.mind, but unless something unexpected occurs or until a new treatment comes along, I probably won't be making any regular updates. (If you're really really interested about my thyroid, drop me a note and I'll keep you informed.)

I hope this doesn't decrease anyone else's hopes for their own treatment, and I'd like to sincerely thank everyone who has stopped by and left me kind notes or sent me emails. Please continue to feel free to contact me or write comments here.

- Gavin

12:55AM ET
Wow, you are an opptimist.
Gavin Kistner
09:26AM ET
Heh :) Yeah, I know it. And like I said, my situation is different than some, where my disease hasn't progressed too far, so I'm not in dire need of curing it right now.
07:35AM ET
Dear Gavin I am sorry to hear your treatment was not sucessful. You must be an optimist and I know what you mean about being glad you are going to feel good again, not be on the drugs, for the holidays. They will end my treatment probably next week for the same reasons. I just wanted you to know that your still not alone with this and the new pegilated interferon is coming out VERY soon. Probably like Jan or Feb. Many places are in the trials now,(free meds) but you must be off the other for 6 months. You must keep in mind that the longer you have this disease the harder it is to get rid of it so even though you do not have much damage now, that could change so you want to stay on top of it. Do not wait until you think there is an urgent need to get rid of it, there is one now. Sincerely Rene
12:29PM ET
I'm with you!! Treatment also did not work for me, and am waiting for the next one. I have a small amount of liver damage, and blood work is a little to abnormal to get in on any trials. Seems the drug companies don't want any too sick people to get first try because it might make their drugs look bad. Didn't know how badly the interon treatment made me feel 'till I stopped taking it. Now I feel great, but still have hep c. Hang in there!!
James Newton
05:16PM ET
Just wondering if you ever wish that you hadn't found out, or just didn't worry about it? As if that were possible! I'm impressed that you did everything you could and didn't just give up. But in the end, it seems like medical science is just practicing on us and really does nothing useful more often than not with regard to hepatitis C.

Hypothyroidism Survivor
03:04PM ET
I should be dead because for 30 years my hypothyroidism was never diagnosed by M.D.'s Likewise my mother, aunt and uncle. I'm the only one left, but along the journey of learning how to stay alive and survive, I came to learn of Henriette Kress's postings regarding herbs and of Chinese medicine, which has a very different approach to hyper and hypothyrioidism. This does not mean I'm against or down on M.D.'s, I ONLY want everyone to realize that there are other paths you can follow when the M.D. suggested pills, therapies or operations fail to work.
You must see an appropriate expert in one of the above mentioned fields and it is up to you to search using google to find what might work and try it. For me, I gradually learned what low kidney yang and low liver Qi was in relation to hypothyroidism (see the triple-leaf tea web site for "horny goat weed" tea or, even better, male yang enhancement tea and LEARN what the herbs are in those teas. You must STOP accepting everything the M.D.'s say on faith and learn to be CRITICAL in your evaluation of their suggestions. You must understand that a GREAT DEAL of anti alternative medicine hype is out there, ready to accuse any non-M.D. or anyone who deviates from "standard practice" as being a charlatan, and yes, regretfully, there are some charlatans out there, some with degrees and some without. When I was in college, the Internet did not exist yet but it does now and there is no excuse for you to not use google and learn.
06:13AM ET
I am on the pegasys and ribivirin meds for my hep's amazing but after the first couple of weeks I didn't feel all that bad and was able to do stuff, although I tired very easily..Even though I had had several opinions about treatment, basically all the answers were the same...Do It...Although the doctor misplaced my readouts from the blood lab, he said he thought I should stop as he didn't think it was working! Excuse me, how can that be when you do not know? Well several days later he found my lab work and told me that I had gotten rid of 98% in 12 weeks treatment! I got excited, maybe I would beat this thing, even if it meant being quite ill for 48 more weeks. However, this week my muscles started to feel like they were "charlie horsing" I called the doctor and once again he acted like he didn't know who I was and said that I had too many problems with this medication..?? hello?? This was the first. But I feel like this medicine may be tearing me down so I think I will stop again and wait..I was symptomatic with this disease before I found out that I had it, but I don't drink and my liver is okay so I think I will just stop. I hope that I don't have problems feeling worse when I quit..I didn't before..maybe I will get luckier..I applaud anyone who has tried these medications and beat it after 18 months, but I just can't take the chance of it messing up something else.
07:16AM ET
Well Gavin, I guess I got ahead of myself because this last page is the first I read...I totally can relate to the brain disfunction! I feel so stupid at times, or like I have turet's syndrome...but back to my treatments, all that you have written is information that the doctor I see has no idea I said the doctors here are the ones that didn't finish anywhere near the top or middle of their class, they are so uninformed! Plus when you call they can't find your charts or lab results and give you false information. The doctor had me go back on the medication after he found his mistake! Anyway, the side effects are devistating, but I felt like I have done better than most..I have not taken any anti-depressive drugs and I have not experienced any depression at all..I got lucky, I did have mood swings and uncontrollable crying at first, but it seemed that my determination to beat this thing out weighed any of that, and I think my body got alittle used to it. Now in my earlier statement about the muscle reations I am having makes me fearful and I want to quit the treatment, but should I in your opinion? I have gotten rid of 98% and I hear if you stop treatment before 0 it will come back exponentially. I'm sure I've had this for at least 30 yrs due to a tattoo, but I have no signs of liver damage. Even though this is awful, I am scared to quit. But quite frankly I am tired all of the time and have become anemic it worth it? only 1 in 3 get results of beating this...and most times when followed up on it comes back in 6 months...Gavin you seem more knowlegeable about this then my doctors, could you email me and just give me your opinion? I would love some advise from someone who has experienced this..the support groups on the web for the most part are a joke. I hope since you've stopped treatments you are keeping up with this site because we need you! Thank you
07:29AM ET
I tried to email you Gavin after I found your site for that, but I got my letter back..I hope you still check this site because I am really counting on hearing from you..your info has been such a help. Thanks
07:20AM ET
Had the treatment (48 weeks)after 12 weeks no virus, at 37 weeks no virus (overactive thyroid-treatment)at 48 weeks no virus.Now 72 weeks after treatment-VIRUS IS THERE, not much only 35.000 (was 374.000)-good liver function all blood results are good, but virus is there-WHY ?????
Maybe it will make you feel better, I have suffered so much, one year of my life gone, for what????
I know what you are talking about, will never forget this treatment.I try to be positive (have 2 sons to take care of) maybe I gave them the same virus (none of them wants to be tested-they do not want to know). How will I feel if one of them has the virus not the other?
I hate this virus so much-but it likes me, maybe I am a nice person after all.
Finishing this treatment was the biggest achivement of my life. Yes it did not work, but I have tried. Hope as you do,that one day there will be a little (nice in colour) pill and these animals in me will die- this time all of them.
To Sharon- hang in there, there is a light at the end of the tunnel, was there - I really know what you are going through. Hope you will feel better soon. Bozena
Gavin Kistner
06:54AM ET

Five and a half years later, a small followup on my thyroid:

According to 23 and me, I do have a genetic predisposition to hypothyroidism. And, unfortunately, I have not been able to stop the medication. I have tried on several occasions, and the result has been whacked-out blood test results. Indeed, my daily dosage has slowly gone up through the years.

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