Singersue's Journal

Hi from a very rainy Boston!  (hey at least it isn't snow!) It's been a while since I have written- for some reason it seems harder to write when I'm frustrated!  The past few months have been somewhat tough. I had decreased my dose of methimazole from 10mg to 5mgs in November because I became hypo and in late December I started to not feel well again- the only nice aspect was that I could seem to eat anything I wanted around the holidays and not gain a pound because I think I was on the hyper-side! (even though labs were ok) My ranges were still normal with a Free T4 or 1.2, however my TSH was low at .04. in January.  Around that same time in January, I became very short of breath with any activitiy like going up stairs, my eyes became worse and every muscle in my body seemed to burn as if I had lifted too many weights, all of my joints ached- couldn't even hold a pen one day,  my hands and feet were freezng and I had no circulation/numbess feeling and I was having night-sweats all the time. My heart rate and mood were fine though- I went to see the doctor about a month ago when I was still feeling horrible, he did lot of blood work and my TSH was still low at .2 and my free T4 was 1.0 and Total T3 was 154- both within normal range. Seems my entire life, except when I was really sick a year ago, that I feel crappy and blood tests are fine. The endo ended up saying that my symptoms were "confusing" and "didn't make sense" The only levels that were off were my eosinophils which indicate allergy- they've been high before I had Graves because I have a ton of food and envirtonmental allergies these days, but my doc said the only thing he could think of was that I was possibly having an allergic reaction to to the meds (although atypical)- I was really upset because as many of you know, I absolutely don't want to do the RAI (just a personal feeling) and surgery would risk hurting my voice as a singer. Suddenly a week or two ago, I started feeling better (and started gaining a little bit of weight which is not ideal of course), but I would rather gain a little bit of weight and feel well and be able to exercise again!  Not sure why I feel better but I am so happy that I do! I even went to my favorite balletone class at the gym this morning and didn't feel like I was going to pass out!  Sometimes I wish that the thyroid could be like insulin so that we could be constantly adjusting meds to avoid this horrible rollercoaster of feeling ok one minute and horrible the next! I feel like I have no control over how I feel sometimes! VERY frustrating.  Hopefully this streak of feeling well will last a while!

Good news! My thyroid levels are perfect for the first time since I was diagnosed with Graves! :) I also had my liver levels tested for the first time since I started the medication and they are also normal- what a relief! I decreased my methimazole about 2 1/2 weeks ago to 5mg because I had become hypothyroid (should have gone for that blood work earlier- I would have saved a lot of hair, about 10 lbs of weight gain and avoided about of month of horrible fatigue!) After about 2 weeks I have finally started to feel somewhat like myself again. The strange thing was that I initially felt worse rather than better when I decreased the meds which worried me, but I guess it was just my body reacting to all the changes (my TSH went from 22 to 1.2 in 10 days!) Just thought I would share some good news!

Although I've reduced my methimazole from 10mg to 5mg 10 days ago, I'm still feeling horrible- I'm exhausted, can't concentrate or remember anything, horrible headaches, muscle aches and loss of appetite and stomach pain. I went for labs again (2nd time in 2 weeks) today. I'm not sure if I'm still hypo or if I've become hyper from reducing the meds. Ugh. I'm a little bit afraid there is something else going on- hopefully it isn't a side effect from the methimazole.  I'll update as soon as I hear from the endo- hopefully by the end of the week. Trying to keep my spirits up as it is getting colder and darker here in the Northeast!