Entry 14: Hypothyroid treatment will be no panacea...

posted 2000-Sep-12

2000-Sep-12 : I met with Dr. DiBisceglie and discussed my hypothyroidism for the first time.

After a scant 15 minutes waiting in the lobby, and 15 minutes waiting in the office (grrr) I finally met with Dr. DiBisceglie this morning to discuss me and my thyroid (along with the rest of my treatment). He told me:

What I've decided to do (and Dr. DiBisceglie said it sounded like a good idea) is to begin the treatment now on a low dosage (50µg/day of synthroid) and increase it until effective--the standard procedure. However, once the treatment ends, I'll try going off the thyroid medication and see a) how my thyroid does on its own, and b) whether or not I can live with how I feel if it happens to be less than perfect. I'm planning this because I really don't want to be on medication for my whole life (especially for a non-life-threatening disease) and I especially don't want to tell my thyroid it's OK to slack off.

The two most important downsides to all this as I see them are:

  1. There isn't a cure for the disease, just the symptoms. I really thought that having been around so long that it was curable, and I could look forward to a month or two of treatment and then happy days.
  2. If it does make me feel better, it won't be immediate, and possibly not even in 2 weeks. Since my next appointment with Dr. DiBisceglie isn't October 11th (when I find out the results of my Viral "has the treatment been effective?" Load test) it may be a more than a month and a half until the thyroid medication is properly dosed and I'm feeling better from it.
Other Notes

Separate from the thyroid, Dr. DiBisceglie was happy that my hemoglobin had gone from 10.2 to 10.8, but he is definitely hoping for it to go higher (as am I). I think there's not a lot of cause for alarm, since the two blood tests were only 2 weeks apart and the half-life of ribavirin is something like 14 days...so after 2 weeks the 1000mg/day I had been taking were possibly still affecting me then.

I've been having a little more energy, feeling better about things, but am still strongly controlled by sleep. I got 8 hours on Sunday (which was a shot night) and felt pretty bad for most of the day--nauseated in the morning, listless all day. 10+ hours is still my goal.

My company is sending me to talk at conference next week, and I'm excited for it. It will be a good motivator to show me that I can still getting on and living my life aside from the treatment. (Although I'm a little worried that I've been given only a week to prepare and practice for a 1-hour session starring...me. *gulp!*)

About a week ago I didn't take any Advil before my shot (which I frequently forget) and didn't take any afterwards, before going to bed (which I always do if I forget to take it before the shot). I actually remembered as I was falling asleep, but decided that it would be a good test to see how my body was handling the medication. Result: strong chills in the night. I may be well-accomplished at giving myself the shots, but my body still isn't used to getting them. Oh well...no worries.

I asked Dr. DiBisceglie (or rather, Lisa did) about the fact that after going on a walk for 2+ hours, my back muscles get destroyed for over a day. Specifically, she wanted to know if we should be worried about my rather sedentary lifestyle causing too much deterioration during the treatment. The doc said no...I'm young (27 doesn't feel young :) and there should be no medium- or long-term muscle problems after the treatment. I have to remind myself, though, that this is not a license to be lazy. I continue to motivate myself to do mild exercise just to make myself feel better later. (Lisa and I went on a 10-minute post dinner walk tonight...the first in a long time!) Hang in there, everyone!

11:01PM ET
Hey Gavin. I just caught up on a bunch of updates I hadn't read in a while, and I really enjoyed them. I had a few medical comments to make: about the outer-thigh shots giving fewer bruises than the inner-thigh shots, the reason for that is that the major veins that drain the leg run on the insides of our thighs (as do the major arteries that supply the leg, but let's HOPE you're not hitting those!), so it makes sense that you would accidentally snag the veins every now and then on the inside. It's a good idea to use the outside more often, especially if you're having problems with bruising.

Also, about the hypothyroidism:
The most common cause of hypothyroidism is called Hashimoto's Thyroiditis. It is an autoimmune attack of your thyroid by your own antibodies. It destroys the thyroid, leaving you permanently hypothyroid. This is the most likely cause of your thyroid disease. It's possible that you would have gotten this anyway, but it is also possible that the ribavirin (which has been associated with "autoimmune disorders") may have pushed you over the edge. In any case, there is a lab test that can be drawn to find out if this is the cause. It is called an TPO Antibody titer, and it looks for antibodies against your thyroid. I would suggest getting this test.
If it is high, then you know that this is the cause of your thyroid disease. The reason it would be good to know this is that if you have Hashimoto's you will then know, without the two-week hiatus in treatment, that your thyroid disease is not going to go away, and will in fact probably get worse.

Maybe that's a bridge you'd rather cross later. But I also want to emphasize that the treatment is less of a "medicine" than a hormone that your body used to produce on its own. So you're not taking something that is a foreign substance designed to alter your body's normal function. It's a normally found substance designed to do exactly what your own hormone used to do.
11:12PM ET
Oh, crap. I was trying to break that above comment into readable paragraphs when I accidentally sent it. Anyway, to continue:

So the point is, I wouldn't worry so much about taking that particular medicine forever.

And about hypothyroidism being non-life-threatening, I want to point out that that is not entirely the case. Long-term hypothyroidism can lead to things like dilation of the heart, intestinal obstruction, and cerebellar ataxia (which is an inability to coordinate movements, like being really really drunk all the time). These and other problems that it causes when untreated can indeed be fatal.

Maybe you'd rather think about all this later, and if so, I'm sorry for bringing it up now. But I know that you want accurate information on this site, so I thought I'd mention it.

Good luck with everything. I've got all my bets on the thyroid replacement hormone. Love, Jessica
Gavin Kistner
11:15PM ET
Not at all, I love getting the inside scoop. This is good stuff! And yes, I know, right now the site doesn't format your comments properly. I'll go in later and break them into the paragraphs you meant them to be (at least insofar as you did so before sending).
Dain Kistner
04:32PM ET
Good to see another update, and very glad to hear that you may be making some progress on getting the energy back.

Good luck with the speech next week - I'm sure you'll ace it!

(Btw, 27 *is* young, ya whippersnapper - come closer and I'll beat you with my cane! :P)
vikki smith
07:54PM ET
Thaks for sharing - I just started treatment on 9/9 - so far o.k but soooo tired - and insomnia. It's better than I expected though at least I'm functioning (single working mom,and very old )I have alot to say and even more to ask- but I'm too tired. I'll look forward to more entries. Your doing great and I although I don't know you - you are my new inspiration.
09:20PM ET
Dear Gavin, I can't stand the wait for your "advice entry" so I'll just ask you now...why do you only drink 3 or less glasses of water a day now? I was told to drink lots more than that. I've been wondering about this since you first mentioned it. How'd the conference and the speech go, good I hope! Rene
Gavin Kistner
08:13PM ET
Vikki - why thank you :)

Rene - That I happen to be currently only drinking 3 glasses of water a day, and that I plan on adding information to the Advice section, are unrelated. Or rather, they are inversely related--the advice I was planning on adding was, "Just because you get used to the routine, don't think you can stop doing the things which make your life better." I was down to 3 glasses of water, and didn't really realize that I had been slowly slacking off. Upon increasing my intake to over 6+ glasses a day (still probably not as much as is recommended) I started feeling better. Hence the advice. :)
12:35PM ET
Gavin- What a great web site! Thanks for sharing your ups and downs. I've been on therapy for 9 weeks. I have constant upper right quadrant pain; have you had any similar discomfort?
Gavin Kistner
01:05PM ET
Hrm...nope! I'm interested--what does your doctor/nurse say about that?
11:29AM ET
My doctor says its my imagination. However, I've found an article that might explain the cause. In laymen's terms the liver is encased in a sac. Hepatitis C causes the sac to be inflammed thus causing the discomfort/pain. The article also explained that while on therapy that too can cause this area to be in pain. Who knows. The bottom line is that it comes and goes. It could be worse.
Gavin Kistner
11:39AM ET
What?! That's...appalling, to me. That's the fodder for Lifetime Original shows and bad movies. I can't believe that your doctor would discount your experience and tell you "it's all in your head". How does s/he know?!

If it were me (and I am not a doctor, just a patient who likes to be believed) I'd get another opinion, and probably fire your current doctor if there was even a chance it was something else. But that's me...
11:55AM ET
I also have pain on and off in the upper right(liver area)of my belly. I also am on therapy but the pain begain before therapy. I have been told the same thing, that there is no such thing as liver pain but alot of people with hepatitis and liver ailments complain of it. Mine has been quite bad at times and even hurts my back and shoulder area. I've also been told it could be gallstones(I have no gallbladder but I guess they can form in the ducts) and anonymous 11:29pm should have that checked, there could be some relief there for him. Gavin , you should be getting your viral load test soon, I just know it will be gone, good luck and hang in there! Rene
Gavin Kistner
11:25PM ET
Rene - I actually got the blood drawn for my test last Thursday (Sep-28). I was told it would take at least two weeks to get results from the lab, and I'm going to learn about them on my meeting next Wednesday.

My parents are actually coming to visit starting that day (and likely coming to the doctor's office) for moral support 'just in case' and to see my new house. With Lisa coming too, it's gwanna be crowded in there :) But in a good way.

Thanks for the good wishes!

Oh, and on the subject of 'no such thing as liver pain'--I've read online that there are no nerve endings in the liver, so you can't actually feel the biopsy needle sticking the liver. I felt it, and it was Wrong. Not terribly agonizingly painful, but certainly a feeling of prodding in an area where it shouldn't be touched. Separate from the rib walls. 'No such thing'...phah!
Dain Kistner
09:44AM ET
Huh...this page finally showed the Oct 3 comments - hosting problems again?
Anyway, time for another update! (poke, poke)
I *suppose* I can wait until the big news next week though... :P

Gavin Kistner
10:04AM ET
Actually, for some reason the database got corrupted when Rene added her comment, and it wasn't until late last night that I was able to kill the offending record and repair the database (and drop Rene's comment back in). All should be well again.

I have been kinda putting off the update until next week, but there is some good news I'd like to get out before then (mostly how well things have been going recently). I'll try to get it up sooner.
Kaye Lermitte
07:02PM ET
Gavin, We're saying prayers for tomorrow's meeting and once again thank you so much for keeping us posted. The hypothyroidism info is new news to me and something we deal with at this household so thanks! Love to Lisa too. Aunt Kaye
Rick Roth
05:04PM ET
I went through the same treatment as you are going through. It's amazing the exact things happen and we think we are so unique. I didn't experience the thyroidism but everything else especially the itching late in treatment.
One thing to tell you. When you are done with treatment within a week you feel great and by two months this will be all off your shoulders. Good luck Gavin
I'm praying for you.
05:38PM ET
Dear Gavin, How was your visit with your parents? I'm sure your really busy trying to get caught up. I hope everything is going well with you and that all news is good news. I wonder if Rick (with the last comment above)
got rid of the virus, he only mentions that he went through the treatment, too. If your viral load shows a response will you continue your treatment for another 6 months? Sincerely, Rene
Gavin Kistner
12:41PM ET
Usual apologies for the long delay. I'll really try to get the next update out by this weekend.
09:36AM ET
Dear Gavin, How are you?? Good news would be great since the above mentioned Rick did not do so well on his treatment, and I have not been responding as well as hoped either. Upon my last check up my enzymes are slowly creeping up, I am into my 4th month of treatment. They are going to do a viral load the end of the month. The doctor mentioned the new peginterferonalfa-2b and we will discuss that at our next meeting. I need to find somthing that will work because I am grade 2 stage 3 and must stop the progression to stage 4. I sure hope you are doing well,Gavin, that would be wonderful news. Rene
07:44PM ET
I am on the pegylated/ribavirin combo clinical trial (in week 9) and so far doing fine symptom-wise, other than the exhaustion, some insomnia, and out of breath a bit walking up stairs. The very preliminary data I've seen on the peg (small sample sizes) is very encouraging, though the N is too small to generalize. I feel a lot better than I expected to. Who knows if it's having any effect (they draw viral levels at 12 and 24 weeks). I try not to pay too much attention to my levels, to be honest, at this point. Unlike the regular interferon regimen where my doc told me at 24 weeks if no viral response, they take you off it, with the pegylated, my doc intends to keep me on it for 48 weeks regardless since there's no data to suggest one way or the other. Have others been given any other info?
Gavin Kistner
06:08PM ET
Rene, I am so sorry your Hepatitis has progressed so far. Hang in there! As always, abject apologies for the long delay between updates, but I've just posted my next (and for the time being, last) entry.
06:47PM ET
Hi Gavin,

I'm very sorry to hear your treatment did not work out. I have been following your site since last July when I started my treatment. Thank you so much for developing such a great site and sharing your experience. Your insite, information and positive attitude have been an inspiration to me. I refer to you as my Internet friend.

I would like to share my good news with you and your readers. I have Type 3A hepatitis. Because type 3A usually respons well to the Rebetron treatment, I had a viral load test after 3 months. I recently received the results which show that I have cleared the virus and will be able to finish my treatment at Christmas.

Once again Gavin, thank you for sharing your experience. It really helped me a lot to know that other people were experiencing the same things. I know you will find a treatment that works for you. Keep up your positive attitude and live life to the fullest. Congratulations on your impending marriage. Lisa is a lucky girl!!

Your Canadian friend
04:09AM ET
I have an experiance that if daily 2-3 tablespoon of virgin coconut oil is taken it improve the thyroid and put it back on its normal work in a year,it control fully the thyroid activities.
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