Thyroids Gone Wild
Posted by wendiwendy
We headed off to Dave’s 12 week appointment at the Hepatitis C clinic feeling a little unsure of things. We didn’t know if we might catch a slightly judgmental attitude because he went off the treatment after they tried to help with the different GERD medication. Dave had called Mita on Monday to let her know he had stopped the treatment again, and we never heard back from her.
“Now, if Mita yells at you, just leave the room,” he joked, as we got closer to the hospital. I knew he was just teasing, but I admit I was slightly nervous about this visit.
When we were about 10 minutes away, I said, “I guess you didn’t need to get there an hour early for labs, since it doesn’t really matter anymore.” Normally he tries to get to the lab around 8 am so they have his results back by the time his 9:00 appointment with Mita rolls around. They use the lab results to tweak the Ribavirin and PEG-interferon dosages, if necessary.
“What?” Dave was shocked. He looked at the clock; it was around 8:30 at this point. “Oh my God…I didn’t even think about that. I was thinking the appointment was at 10:00 and we had plenty of time!” After freaking out for a couple minutes, he just laughed at himself. There was nothing we could do at this point, and we would still get there in time to go to the lab before the appointment. They just might not get the results back in time. Since he was off the meds anyway, what difference did it make?
As we walked in, it was cutting it pretty close – just about 10 minutes to 9:00. Dave decided we should just go up to the Hep C clinic floor and he could do the labs afterward. We got up there and the waiting room chairs were filled up – a husband/wife couple we’d never seen before, and one guy that was in the classes with Dave. We don’t see him all the time because he lives far away and does some of his appointments at a location closer to his house. We chatted with him a little bit and it turned out that he had cleared the virus as well. So of the three people in the class (Dave, Mr. S and the lives-far-away guy) Dave was the only one yet to get the ‘all-clear’ on his viral load. This is a little ironic since he has the type of 1a virus that is supposed to respond the best to treatment. Of course, he may have cleared the virus now…we won’t know until his test results come back next week. But the other two guys cleared first, obviously, since they already knew they were clear. We congratulated our faraway friend and waved goodbye as he left.
Mita smiled and waved from her office, so that put us at ease. She came out to let Dave know that he would be seeing the doctor this time, and he wouldn’t be in until 10 am. Dave asked if he should go back down to the lab, since he hadn’t had time earlier, and she told us to go on down.
After his labs were done and we waited for a while, we headed back up. I had never met Dr. N before – the one time I didn’t go with Dave was the one other time he had an appointment with him. Mita joined us for the appointment. Dr. N started out by asking Dave about the GERD symptoms, so Dave gave him all the details of how it was affecting him, and explained that the new medicine was pretty much the same, if not worse. He looked through Dave’s records and confirmed that Dave was a candidate for fundoplication surgery to help with the hiatal hernia, which is the main issue. Thanks to the GERD medicines Dave already takes, he has no problem with acid reflux. But the hernia was making food and the Hep C medicines wash back up into his esophagus.
The doctor scheduled Dave for a surgery consult, so he goes for that in one month. From there, he turned to the lab results and made a comment about Dave’s thyroid level. He asked Dave how he was taking the thyroid medicine, since it needs to be taken an hour before you eat. Dave explained that he gets up every day at 5 am and takes his thyroid medicine. Then he would eat a snack at 6 am, before his dose of Victrelis and Ribavirin. He was very, very careful about taking the thyroid medicine properly because he knew the Hep C meds could mess with his thyroid levels.
“Well, obviously the Hepatitis C medicines were preventing your thyroid medicine from being properly absorbed,” the doctor continued. “That happens sometimes, and your level is really high.” To be honest, we’d forgotten about the thyroid issue. It was mentioned at the first class, and they checked Dave’s thyroid values at the end of January, before he started treatment. Everything was fine, and it was never mentioned again. Apparently they don’t test the thyroid again until this three month visit.
I was sitting behind the doctor so I did miss some of what was being said. At one point I could tell they were talking about medication dosages and I asked him to clarify – was he talking about the thyroid medicine? I thought he was telling Dave they were going to increase his Synthroid dosage. After he explained that he was talking about the GERD medicine, I asked him if Dave’s Synthroid dose would be changed since his thyroid level was high. He said no, just keep taking the same dosage and the level would probably come down on its own since he’s no longer on the Hep C meds. He’s getting his thyroid re-tested in a month.
The general feeling from the whole visit was one of compassion and a willingness to work with Dave to help him feel better in general. There was no sense of ‘Why didn’t you try harder?’ or ‘Why didn’t you just stay on the treatment even with the side effects?’ The impression we got, from the doctor’s reaction to Dave’s thyroid level, was that he probably would have been taken off the Hep C meds even if he hadn’t had the issues with the Victrelis burning his throat and lips.
Ironically, talk of the Hep C treatment was very minimal during this visit. There was no mention of future treatment plans or any concern about his viral load at all. Pretty much the only thing that was discussed was the fundoplication surgery and the thyroid issue. Towards the end of the visit I finally asked if they would be testing his Hep C viral load now and in the future. “Oh yes, it’s very possible that you cleared the virus, so we’ll re-test you in three months to see what’s happening,” the doctor explained. “If you’re clear now, there’s a chance you might still be clear then. I doubt it, but we’ll see.” Mita then reminded Dave to call her next week to check on the current results of his viral load count.
They didn’t sound optimistic for it to stay clear if, indeed, he has cleared the virus by now. But even if it does come back, at least he’ll have knocked it back a bit while we wait for newer medicines to hit the market. Luckily, there are LOTS of drugs for Hep C in development right now, so we’re optimistic that if he needs them in the future, he’ll have some new options (most likely without the use of the PEG-interferon injection). If you’re curious, this is a great article on all the Hepatitis C drugs currently in trials and what’s going on in the industry: http://www.pipelinereport.org/2013/hcv
Dave wanted a copy of that morning’s lab tests, so we went down to the records department to request them. After we got the envelope, Dave handed it to me while he went to the bathroom. I couldn’t wait, so I pulled out the results and scanned them.
When he came back out, I said, “Hon…did you know your TSH is 77? Seventy-seven! The high range of normal on this sheet is 3.74!”
He grabbed the paper from me and stopped walking so he could read. I could see him looking back and forth between his TSH number and the range of normal printed to the right of it. I knew how he felt – when I first looked at it, I thought I was seeing it wrong. My first instinct was to skip past the decimal point in the 3.74 and read it as 374. I had to keep staring at it to realize that no, the high range of ‘normal’ is less than four, and his TSH is 77. Good grief!
Of course, we got all animated and talked about this for the whole drive home. It explained so much. The first thing we did when we walked in the house was turn on our computers and look up the symptoms of hypothyroidism. We kept reading threads where people would freak out if their TSH was something like 7 or 10, and they all talked about how they could barely function at that level – they were so tired, etc. Two of the biggest symptoms are weight gain and fatigue, and that completely explains why Dave has been so, so exhausted and why he gained 15 pounds in the space of a month. I mean, sure, you expect to gain weight when you have to have a snack with 20 grams of fat to go along with your Victrelis pills, three times every day. But 15 pounds in a month? That was a bit much.
Now Dave naps when he feels like he needs to, and I think he feels less guilty about it because he knows there’s a medical reason for him being tired. His GERD and hiatal hernia symptoms are back to normal; the Hepatitis C meds were obviously a main culprit. We’re counting down the days until his next TSH level is tested (last day of July) so we can see how far it’s come down. We really have no idea how long it will take for it to return to normal, or if it ever will without a change in Synthroid dosage.
We started walking in the mornings again (while Dave has the most energy) and we did stop the 30 Day Shred workout – that was just a bit too much. Easy does it! This is pretty much the end of his Hep C chapter, unless he needs to be re-treated in the future. Things are slowly getting back to normal.
About wendiwendyThis was my original info in 2008: I'm a newly-deafened adult. I'm still getting used to the sudden silence, and I want to talk in the only manner where I can still hear my voice...in print. Now: I'm a bionic woman and I can hear myself roar!!
Posted on July 7, 2013, in Medical Visits, Not Related to Hearing Loss and tagged Boceprevir, Hep C treatment side effects, Hep C triple treatment, Hepatitis C, Hepatitis C and thyroid, Hepatitis C treatment, high TSH, hypothyroidism, peg interferon, Ribavirin, thyroid level of 77, Victrelis. Bookmark the permalink. 2 Comments.