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Well, I’ve made it to the 6 week mark. Had my labs drawn Thursday, and hoping from a call from the doc tomorrow or Tuesday. If not, I’ll call him! I’m hoping very much that my labs are improved enough that I can decrease the methimazole dose. And I’ll be truly bummed if I have to increase it. I already am sleeping usually 10 hours a day since starting it, and don’t have as much energy. I no longer have heart palpitations, my resting heartbeat seems normal (72 as I type) but am so sleepy for so long after I wake up. My weight has remained stable. I think I’ve regained about 3-4 pounds over this 6 weeks, which is all I really want to. Been walking almost every day.
I did manage to get up and work on a garden project that needed to be done before it gets too cold (raised garden bed construction, put in soil, plant bulbs, some hardy plants and ground cover and cover bed in chicken wire against squirrels.) I managed to get a lot done over the past few weeks and yesterday finished all but planting the ground cover, with the help of my brother. Today I feel whupped! Trying to get the energy to get dressed.
I’ve been using Genteal eye drops at bedtime, which have really helped my left eye feel less irritated. Haven’t had a chance to get new glasses yet.
I’ve noticed that when I stretch in bed, I get cramps in both legs that are really painful. It used to happen off and on in one leg, but now I get them in both legs. Last night, my big toe got a painful cramp while I was sitting in my recliner. It was popped up like someone was pulling it up with a string. Weird.
I really don’t like the methimazole. If I have to be on it long-term, I think I’d rather have a thyroidectomy, especially since I have Hashimoto’s antibodies as well. I have lost a lot of my get up and go. Not wanting RAI. My Mom died of esophageal cancer, so want to keep radiation away from that area, plus the thought of putting radiation in my body scares me. But I’m still a ways away from that decision I hope.
I’ll post my lab results when I get them. Thanks for listening!
Amy
Hi Amy,
It sounds like methimazole is doing the job! I was only on it 7 weeks bc of elevated liver enzymes (had a liver panel done with the labs), so I had to stop it, but it did get my levels normalized! I opted for a thyroidectomy (instead of RAI) as ATD’s weren’t a possibility anymore.
If you’re allowed to decrease your dose, maybe going for another 6-8 weeks on a lower dose might make some of the symptoms go away and you might get some energy back. If not though, and you decide to choose surgery, the good thing is the methimazole seems to be getting your levels normal which makes surgery much, much safer.
Let us know how the labs come back.
Hi Amy! I am IMPRESSED that you got so much garden work done. Glad to hear you are walking. (Are you walking in Wallingford?? or at Green Lake, those are my beats.)
Re Seattle and tulips. Is it time to plant bulbs now??
I did an interesting thing. I dug up all tulip bulbs, labeled them carefully, to redistribute the following spring. The rats (alley, Wallingford) at 249 of them!Re the muscle cramps. I have the same issue. Those cramps are super painful, and I have no choice but to get out of bed and stand. It is usually calf, ankle and toes. Terrible! But I have had Graves’ forever. It was infrequent, and the drug of choice was quinine, which has been taken off the market recently. **I have one suggestion. I keep tonic water (contains quinine) at all times. If this happens, I then drink a few ounces at that time, then try to remember to continue to do that for a few nights. I do believe it helps keep them away, and once the cramp is gone for that night, the tonic water seems to help them not returning.
Of interest, my mom also died of esophogeal cancer. It was terrible.
Of interest also, I had a thyroidectomy. There are a lot of good posts for you to read about that on this forum.
ShirleyHi, Alexis–
When I went to get my labs drawn, I asked the lab tech what labs were ordered, which were the usual T3, T4, TSH. I said, well, I’d like to get a liver function profile as well, can you ask the endo if he can add that. Thanks to hearing about keeping track of one’s liver function from the experienced people like you on the forum! The endo decided to add a CMP (complete metabolic panel) which includes liver function tests. Had to smile at that!
Yes, hopefully a lower dose! I am thoroughly sick of sleeping so much. Then I have to zip around like crazy to get stuff done before I go to work at 3pm. My job is lucky I decide to fit in a shower-lol!
I end up feeling anxious all the time, which then makes me confused, because am I anxious because I’m still hyper a little, or anxious because I’m trying to get too much done in too little time? ARGH! 😮 Just ate a Reeses candy bar, which is quite comforting, but the chocolate will probably up my heartrate!
Thanks for your support,
AmyHi, Shirley–
Well, don’t be too impressed. I put off way too long doing this yard project (partly because I was zapped by the Methimazole for a while) and also lulled by our endless summer into hoping the weather would last until the end of October. I was definitely dreaming when it comes to that in Seattle! Anyway, I had to rush, rush, rush to get it done and get the bulbs into the ground before the first frost, and managed to get most of it done before the rains hit. I asked my brother to come to help or it wouldn’t have gotten done at all this weekend. What the Methimazole has done has zapped my motivation. I have to literally force myself to get up in the morning, get dressed, and do anything. Know I would feel horrible this spring when there were no bulbs popping up to cheer me was the only thing that made me get out there.
I have to confess that although I put Seattle on my location when I registered, I actually live in Renton. Didn’t want to get too specific until I got to know people here. So I don’t walk in Seattle, although I’d love to live near Green Lake and walk there. I did that way back in my 20’s when I lived out in the U District. I just walk in a 2-mile loop around my neighborhood, although it’s now time for the treadmill unless the sun comes out and it’s dry. I don’t like being cold and wet! I love Wallingford, it’s such a pretty neighborhood and so close to everything.
As far as tulip bulbs, it’s a good time to plant. You don’t want to wait too much longer. I think Nov 15th is our first hard frost, but I would plant bulbs within the next 10 days. I’m so sorry the rats got your bulbs after all your work. I would have spent the winter setting rat traps while gleefully chuckling under my breath.
I just happened to have a bunch of chicken wire left over from a yard project years ago, so when I read about squirrels digging up bulbs, I knew I had to do that. If my brother hadn’t helped I think I would have sat down and cried.
I can’t take quinine because it makes my ears ring, but that’s a good idea. Some of the leg cramps are probably related to my spine, which has a lot of disk disease and bone spurs, but these latest cramps are unlike what I’ve had before. I’m getting worked up by a neurologist for problems with my left leg, especially when I drive long distances. It cramps and spasms and keeps me from driving more than around 45 minutes at a time, unless somebody is with me to spell me. I’d like to explore the state more on road trips, but that’s just not possible right now.
I agree, esophageal cancer is a terrible way to die. My Mom lived only 6 months after her diagnosis and suffered terribly. A nasty disease. All cancer is. This December will be 2 years since she passed away.
I’ve read a lot on the forum between RAI and TT, but when I’m faced with the decision, I’ll definitely read even more. My brain overflows when faced with too much info and then it’s gone with the wind.
I’ve enjoyed your posts, Shirley. Would you like to get together sometime for coffee/tea or lunch? I would be happy to drive up north. I work in Seattle so the drive up there is easy for me. PM me and let me know.
Take care,
AmyI forgot to mention in my first post above that one gradual effect of the Methimazole that I don’t like at all, is feeling cold again. Since starting Levothyroxine when I was hypo, I had felt normal for the first time in decades. Before that I used to be freezing when everyone was warm, hated the cold temps in Seattle from Fall to Summer, and dreamed of moving to the southwest where it’s hot. Even Summer here was never warm enough unless it got above 80, which doesn’t happen a lot. Anything below 60 was almost painful for me. My hands were always cold, and I was always cold at work. And this was with “normal” thyroid labs (aside from the Hashi antibodies.)
Now I find that I’m cold at night again in spite of the furnace set at 60 with a comforter and wool blanket on top. I was cold this morning thinking the furnace had not been turned up yet, but my son had turned it up to 64 and I was still cold laying in bed. Also cold at work again.
I still get hot flashes in the evening, but I’m thinking that has more to do with menopause than being hyper.
I would much rather be warm than cold. Don’t want to go through the winter and spring being so cold again. It makes life very unpleasant for me.
Amy
I just recently had my blood retested after about a month taking methimazole. I had gained some weight and was hypo again. The doctor reduced my dose of methimazole and I will get blood retest again in a month. This is normal procedure to find the proper dosage of methimazole. Hopefully the reduced dosage will normalize my thyroid levels. I don’t want radiation ablation, as my sister had esophogeal cancer, and I’d rather avoid radiation. My daughter is hypo and on meds for that. She told me it took several trial and errors before they found the proper dosage for her, so I’ll just have to be patient until my blood tests let me know I’m receiving the proper dosage. Good luck to you, whatever treatment you choose.
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