The short story is that the ophthalmologist thinks that my eyes are going into the quiescent phase (despite a partial relapse a little over a month ago). The proptosis is 22/22 and probably not going to change much. The double vision and dryness are much better. Eyes still puffy, but not as much. I can live with it.
Twice this fall and winter my heart began to palpitate, so each time I reduced my PTU dosage, and a week later, the palpitations went away. Each time. Now, for the past month, I've taken 25 mg. a day, and my thyroid hormones now look "perfect," according to the endo. TSH is a hair over 1, FT4 is 0.7, and FT3 is 3. I see the endo again in 4 months but recheck labs in 6 weeks, in case things are not truly stable. He encourages me to check any time I feel funny, although my having reduced meds each time turned out to be the right thing to do. I'm hoping this smaller dose realy means that remission is coming up. I did it before for some 12 or 13 years, and would like to again.
"I love thyroid cases!" he said. I looked at him funny and said, "Me too" with a touch of sarcasm. It was such an odd thing to hear from a physician, although I do know what he means. Nurses seem to "love" wound care, for example.
I feel good—much better since I started up exercising whether I felt like it or not. A few pounds came off, although I only know this because my clothes feel better. I am still up about 45 pounds from this time three years ago. Shocking.
3 comments:
Hi- Good to hear your update. I have a few questions:
-for your TSH what does your lab sheet or endo feel is the normal range, as I know there are some differences of opinion on what is the 'normal range'. My lab sheet says 0.358-3.800 is the normal range and mine is still at .111 on last check in Jan. So my endo advised me to add in a 1/2 a pill in the afternoon to my 2 in the morning and 2 at night. I am no where near going to the low level that you are on. My FT4 is .90 (.76-1.46) so that looks good. Do you think you feel best at your current range?
-Do you know why you would get the palpitations? It seems like the PTU would keep that from happening but you reduced your dose...
-what was your partial relapse like?
I feel like I am doing well. My eyes seems fine really but I sometimes catch a glimpse of myself in a mirror at a store when I'm out and sometimes I too still look puffy- what the h? Do you think that will diminish over time? It's not too bad, I can, as you say, live with it, considering the alternative but I used to not be like this!
As always thanks for the updates and info. I always look forward to your comments!
Hi Kelly,
My lab's range is very similar to yours—for all practical purposes the same. Try not to concern yourself too much with TSH levels, as long as your FT3 an FT4 levels remain mid-range. Re: FT4: my endo tells me mine is lower than ideal because PTU affects it that way (I forget the mechanism). So I have never seen it above 0.8 in me.
And yes, I feel very good right now when my labs look like this.
I asked Elaine Moore about palpitations and she said that hypothyroidism can also cause them. I imagine because the body does not use oxygen efficiently at the cellular level in hypothyroidism. All I know is that I had them almost as bad as when I was hyperthyroid, and that reducing my dosage made them go away after one week or so.
The eye relapse: mainly I felt grittiness return, plus the odd feeling of something hoisting up my right eyelid. My eyes had looked fairly normal but now the one eye has that icky "stare" again. But things are still much better than a year ago, when my eyes hurt and were super red and one eye shed tears half the day.
Puffiness: Kelly, I wish I knew. I saw figures about the resolution of double vision and swelling, and all I remember from it is that not everyone fully recovers. I've kind of resigned myself to looking older and less symmetrical! Not good news, I know.
Please keep me posted on how you are doing, Kelly.
Hi-Thank for getting back to my questions.
I will ask my endo about what you are referring to with the TSH and PTU. Also, he mentioned to me that he thinks the longer it takes me to get in the normal range the less likely remission will happen. I'll have to follow up more with that. It was a year this past Nov. that I've been on the PTU and every time I see him I have had to adjust my dose. He also mentioned that of all his patients, I am most sensitive to the drug- something about the way my body metabolizes it- I know every one is different.
Yeah, I feel like I have that slightly 'older' look like you mentioned- then again I did just turn 40 in Jan. YIKES. I still have a hard time saying that out loud. But overall I can't complain.
I'm going to read my book from Elaine Moore again so I can ask my endo about the TSH point. He does seem concerned about that. And I need to have the FT3 on my labs it's not on there. I'll ask him next time for that.
Okay, thanks again. Wishing you continued good health and remission ahead! Peace.
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