Entry 13: A new and interesting disease appears...

posted 2000-Sep-5

2000-Sep-05 : As usual, apologies for not getting this update out sooner. I was partially waiting for the results of my most-recent blood test, but then again I think I told myself that last time as a way of procrastinating the writing. In any case...

Summary: I'm starting week 21 and lots has happened since my last update. In brief I've moved back home to St. Louis, I'm getting my medication from a new source, my energy level is slowly rising, I've been prescribed Ritalin, dropped my Rebetol dosage, reduced my hair loss, and it now looks like I've got hypothyroid disease.

Last entry I left it that it looked like I'd have to start paying the 'full' 50% price for my medication from now on. I'm thankful to say that Lena at Dr. DiBisceglie's office found some mail-order company which she said should be much cheaper. I haven't received a bill yet, but they were quite nice on the phone, mail out the medication overnight once a month, call and check up to ensure that you got the medication, have their own nurse staff that you can call if need be, etc. Urgh...now I can't even find the company's name. I'll have to update this later when I find out.

Remember last update, when I said that I couldn't get up in the morning for 2 days? Well, that went on for a while. Some days I slept 12-14 hours and still had no energy. I was sick out of work for a whole week, unable to get up the energy to go in and work at all. The next week I was able to work half days (where I'd sleep 'til after 11am, and then finally get to work around 12pm-1pm, and work until 4:30 or 5:00, at which point I just needed to go get some rest.

Anyhow, I'm happy to say that it has gradually gotten better. At this point I still need 10-11 hours of sleep to function happily, but I can get out of bed after 9 hours if need be. And I'm working full days (from my home office, as I did before the treatment). Part of the problem during that boneless lump period was depression. I was frustrated by problems at work, tired of the treatment, and for a while had stopped taking my St. John's Wort. I used to doubt its efficacy, but I now see that I'm definitely happier when I take it once a day.

After getting back to St. Louis, I visited Dr. DiBisceglie on August 12th. For once I prepared for the appointment, writing down everything I could think of that had happened since last we had met (3 months earlier), and mentioning all the minor things. I think it paid off well! (And I don't mean the ritalin--read on to the thyroid information.)

Describing my inability to concentrate and feelings of too-many-inputs, Dr. DiBisceglie said that it sounded quite a lot like what children with ADD (Attention Deficit Disorder) experience. (Though many of them are not able to articulate their problems with too-many-inputs.) For this, and because it was affecting my work, Dr. DiBisceglie prescribed Ritalin to help me concentrate. As a mild amphetamine he said that it had few side effects other than difficulty sleeping, and that it's effects only lasted for 3-4 hours, so I should just take 1 a day, in the morning.

The results of the Ritalin have been rather disappointing. I think I have noticed a small, small difference between when I take it and when I don't, but it's so slight I've decided only to take it when I really need to concentrate, and not to have the prescription refilled when it runs out.

I also talked with Dr. DiBisceglie about what could be done to boost my red blood cells (because I personally attribute a lot of my symptoms to my anemia). He told me to take some Folic Acid vitamins, since it is heavily used in the production of red blood cells and it's possible that I could run into a deficiency.

We discussed ProCrit, a drug designed to combat anemia by boosting red blood cell production, and primarily used in patients undergoing chemotherapy. Dr. DiBisceglie said that the side effects were almost non-existent, and that he had used it on two patients of his--it worked for one, and didn't work for the other.

Finally, we talked (at my suggestion) about dropping the dosage from 1000mg/day of rebetol to 800mg/day. Dr. DiBisceglie felt that this could be done without significantly affecting the chances for a positive response. He mentioned that he had participated in a study by Shering (makers of Rebetol) regarding dosage, but that once it was finished Shering never released the results and continued to suggest 1200mg/day. Roche, however, the other makers of a ribavirin product like Rebetol, have always suggested 800mg/day.

I weighed the choice between adding ProCrit versus dropping my dosage. I decided that rather than add medication in an attempt to push my body to produce more of what I was taking medication to destroy, I would rather just reduce the destruction at its source. I got a blood test at the time of my appointment, and a few days later I found that my hemoglobin was at its lowest ever--10.2--and I decided to drop my dosage. At this point, 3 weeks later, my hemoglobin has now risen to 10.8.

It's a minor worry, but in my vanity I have been trying to reduce the rate of my hair loss. I have found that getting a hair cut (shortening the hairs, so they pull less on the scalp) has had the most dramatic success. Also successful was reducing my use of conditioner (it seemed to strongly encourage loose hairs) to around once a week, and using a less stringent shampoo. At this point the hair loss seems to have slowed quite dramatically.

This is the big news. During my visit to Dr. DiBisceglie, when I listed all my symptoms at once (giving him the big picture) I guess he suspected something, because he threw a TSH test on my blood work. [I wish he had shared his suspicions with me rather than getting a test in 'secret'.] That blood test, and another I got 2 weeks later, bore out his suspicions--it seems my thyroid is not fully doing its job. Where a normal range for a TSH test is .5 to 5.5, my two blood tests showed 7.335 and 9.128. Clearly too high, which means that I have hypothyroid disease.

At first, I thought, "Oh great, not ANOTHER problem! Hypothyroidism sounds like a serious disease." But here's the deal...in reviewing the list of symptoms that it can cause, I discovered that a lot of them described my sitation very well. Further, it's easily treatable, and a well-known and well-studied disease.

I have a new appointment with Dr. DiBisceglie next week, so I'll know more then, but it seems to me (and my fiancée, and my knowledgeable med-student friend) that it may be a simple matter of treating my hypothyroidism to get a lot of my persistent bad symptoms to go away! Here's to hoping! See the Hepatitis Links page for pointers to more information on Hypothyroidism, esp. as related to Hepatitis C.

Treatment Advice

I'm about to add a new section to this site, Treatment Advice, which should be an updated, ongoing accumulation of what I've learned. I realize that there are some things I wrote in earlier journal entries which I no longer follow (e.g. I rarely ever have more than 3 glasses of water a day anymore), but never mentioned that I had changed. After I send out some long-delayed tax information, I'll try to add that section tonight.

Finally, thanks to everyone who has written to this site! I get quite excited when I find out that a person undergoing treatment found my site helpful, and when I read that someone else has finished the treatment and cleared the virus, and whenever I find that a friend or family member chimes in their support. Thank you all!

Gavin Kistner
08:58PM ET
As an addendum, I realize that once again I've failed to thank and acknowledge the most important person who has contributed to my recovery--my fiancée Lisa. Her continued support and fantastic help in taking over extra duties to account for me being such a frequently listless lump has made a LOT of difference. Thank you, love!
Thayer York
07:08PM ET
Interesting to see how much the hair loss can be reduced just by making cosmetic alterations. Also, I give a double thumbs up on your logic behind the dosage reduction decision, especially since all indications are that 800mg is just as effective. Now get that thyroid back in line.

BTW - nice to see another update, despite you taking such poetic license with poor Mr. Gershwin. :)
Gavin Kistner
07:20PM ET
Glad you got the pun...I wish the other topic headers could have been so witty. :)
Kaye Lermitte
09:39PM ET
Dear Gavin,
I too am thrilled to see the web site updates. It makes me feel much more connected with you and Lisa, and helps me direct the good vibes. I also appreciate your choice of less not more.Some of your word slippages sound just like me, normally... but I don't think I have Hepatitis C... maybe just a permanently addled brain.On a completely seperate note Brie, G, and I finished Harry PotterIV and thought fondly of you.Keep up the good work And attitude!
03:42PM ET
Reading your site has been an inspiration. As I contemplate commencement of treatment, I've come across some journals that describe very serious side effects and it's alarmed me. I work out 3-4x's a week and have been staying as healthy as possible. I only hope this will help once I start the injections. By sharing your experience, you have given me some encouragement. Thanks.
10:28PM ET
Gavin, Thankyou for taking the time to ceate & update your site. I'm on week 10 now. I found your site about my 4th week. I've not had any problems yet (another blood test 9/13/00). I get short breathed climing stairs or carring objects (20 lbs +) for long distances. The Shots only bother me when I give them. I've used my right & left thighs & am getting ready to have to start over on them. You had stated that some areas are less painful than others - Yes, I've definitely found 4 or 5 spots that are quite unpleasant to inject out of the 30 I've done. My thighs are a little bruised. I've had to have my Dr. give me a script of Ambien 10 to sleep through the nite. After a week I tried to go to bed one evening without taking ambien . . .I slept 2 hours & was up until 5 am. Now my Dr. says we'll worry about getting off the Ambien after we whip the HCV. Can't forget to thank my wife for her support, prayers, & commitment to assure me that this 1 year of an 'alternate lifstyle' will give us the rest of our normal life together. Thanx for the encouragement - You're in our prayers.
Gavin Kistner
10:41PM ET

In the last month+ I've really found that rotating between 4 injection sites (2 in each thigh, on the outside and at 2 different 'heights', but both near the top) gives me no trouble with site re-use, and allows me to use only those sites which aren't painful and which don't bruise. (I did get some occasionally nasty bruises before when I used middle-of-the thigh spots.)

About sleeping through the night, I know what you mean, though probably to a lesser extent. When I give myself a shot late, or take my ribavirin late, I usually wake up 4-5 times during the night, and can't get back to sleep for 20 minutes or so. Besides trying to remember to do the shot/pills earlier (and avoiding caffeine) I've found that the *occasional* Benedril works wonders for getting a solid nights' sleep. But like I said, your insomnia seems worse than mine...

net.mind details other résumé contact