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in reply to: Problems with synthroid after thyroidectomy #1063481

Sorry you’re having so much trouble with feeling bad now. You really need to wait at least six weeks between dose changes to see if things worked. Sounds like you have been tested too much too often to really get a good picture of what’s happening to your TSH. It has taken me over a year to get the right dose of levoxyl after I had RAI in May 09 and went hypo in Sept. 09. I am really close now but it has taken some fiddling but I was warned that if we tested too early, before at least six weeks, that I wasn’t going to get a good snapshot of whether the new dose was really helping or hurting my numbers. I have to tell you that every time, I mean every time I changed doses even just a little bit I had at least a month of adjusting. It really stinks but it’s what you’re going to have to do to get better. Are you charting your BP and pulse rate every day? Are you drinking caffeine or taking any other medications that might be affecting your heart? I have gotten very sensitive to caffeine and am going through menopause and that can affect my heart rate when I am having hot flashes. Are you staying well hydrated? All these types of other forces can affect the way you feel your heart rate/etc. now that you are so sensitive to it.

Hope you get a better doctor and start to feel better soon.

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in reply to: I waswhen does actual healing process begin #1063692

Susan,
I am over a year out from starting hormone replacement after RAI in May 2009. It does take a lot of time for your body to heal. I am now very close to my correct dose and I do feel that I am a lot better now. It’s all relative though. I am not like I was before Graves and I’m not sure I ever will be. It does get better…… Keep on thinking positively. A lot can depend on what else is going on in your life and your health.

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in reply to: RAI tomorrow #1063863

Good luck with your RAI. Glad you have made a decision that suits you.

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in reply to: RAI set for Sept. 30 #1063872

Good luck with your RAI. I got my instructions in written form as well as hearing them. It was great to have that and the phone number so I could have called back if I needed to. I had my husband with me and he was a great support, figuratively and literally as I was sure my legs weren’t going to be able to get me from the car to the hospital. I was a mess…… A lot better now more than a year out. Levoxyl dose finally getting more settled and I’m able to do a little more every day.

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in reply to: EYE MUSCLE (STRABISMUS) surgery, post op day zero #1063982

Glad it all went well. Now for the hard part….. waiting.

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in reply to: CVID and Graves? #1064017

I don’t know anything about CVID but I tend to trust WebMD as a good starting point for things. Mayo clinic is usually good too.

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in reply to: Odd Symptom #1064029

I called my feeling like that walking in molasses. It felt like I was struggling to cut the air around my legs sometimes. It does get a lot better.

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in reply to: DOWN #1064075

Sorry you are having a down day. I’ve had plenty of them too in the last three years…… You can rest assured that when we say we’ve been there on this board, we really have. Have you had a good cry today? I ask because when I was really down I found that after I cried those "feel better" hormones kicked in and I got a little boost. It also seemed to help me clear my emotional palate for a while. Are you taking any Vitamin D? I know that when I started taking enough I did start to feel better in some ways; seemed to be able to handle some issues better. I already have osteoporosis due to the hyperthyroid state I was in for so long. If you have a chance at your next labs, ask your Dr. to check your D levels.

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in reply to: I have another ?–re: exercise #1064092

Ellen,
Thank you so much for posting this information. It really helps explain what I have experienced over the course of my illness. I thought that I was loosing my balance but I think it really is the muscle contraction problem in my upper legs. I have had fibromyalgia for years but these feelings are not anything like that. I am slowly working on getting my muscles back into shape now that I am almost euthyroid on replacement hormone after RAI last year. Anyone know anything about supplements/diet to help with muscle rebuilding. I am already taking calcium, magnesium and Vit. D3. I know that protein can be important but I don’t eat a lot of meat.

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in reply to: Any feed back on NMD’s? #1064116

A week isn’t enough time. I am guessing you are on methimazole or ptu. It can take weeks to start to feel better. I was on atds when I was first diagnosed and I actually felt worse for several months before I started to feel better. Not trying to disappoint you but it’s not a quick fix by any means. You have been sick a long time. All of us who have Graves get very impatient during our recovery. Lots of bad language and crying in my case……My husband was sure my hormones had all cracked

I was diagnosed in Fall 2007- sure I was sick for a while before that as well. Atds didn’t work for me and I finally had RAI in May 2009. Other’s stories are very different than mine but one thread runs through all of them… it takes time to get well. I’m glad that you can take some leave. You need to take care of yourself. You muscles and sleep will get better as the atds start to work.

Hope you have a good sleep tonight.

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in reply to: TSH & cat scan question #1064141

I don’t know but I’d ask to make sure the same lab was doing the tests and ask the lab to check on their end to make sure the results were reported correctly and that they actually measured TSH and not something else. Your .203 and 20.4 aren’t that different if you move the decimal.

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in reply to: excessive hunger #1064175

When I was undiagnosed, but knew something was very wrong……. I ate about every two hours which was hard. I got tired of food and I was sick enough that it was hard to get to the kitchen and make something good so I ate out of boxes and the fridge when my husband didn’t leave me something good. When I was on atds and my levels got more settled it stopped. When I went hyper again after getting off atds to go toward RAI it came back some. I am trying to find my golden dose of levoxyl about a year after going hypo after RAI. I haven’t experienced that extreme hunger again but I do have days when I really feel that I’m not getting enough calories to be steady. I am coming down from a high T-4 right now on a lower dose of levoxyl. My weight has been up about 25 lbs since I went hypo on the atds about two years ago. I hope that when I finally get settled I can start losing some weight. I have lost about 7-8 pounds since going back on my weight watchers but I can’t seem to break that level, yet. When you say nervous, do you mean anxious? I had some real panic attacks when I was really sick. I think it can be that way if you are really hyper. I still have some bad mornings……

Hope you feel better soon,

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in reply to: Second round of RAI in the morning. #1064189

Good luck with the second RAI. I’ll be crossing my fingers for this one to really work all the way for you.

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in reply to: Jitters while Hypo? #1064194

I’ve had the same feelings since I had RAI. They are slowly getting more and more uncommon now that I am a year from RAI and hopefully close to my "real" dose of levoxyl. It’s a long long process to get to feeling better. Whenever I am sick, like this week with a sinus infection, or stressed I feel like I could be Hyper woman again. I am very sensitive still to my heart rate and feel like I can tell you my BP without a reading ” title=”Very Happy” /> It will get better. It takes a lot of time for your body to adjust to new territory. I used to live in Seattle and know that you can find great care there from docs so just keep telling her what’s going on and things will eventually turn in your favor.

Hope you feel better soon.

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in reply to: Six Years Gone! #1064200

Just what I needed to hear this weekend. Almost a year on levoxyl and still searching for the Gold dose. I know it will get better…… If only this sinus infection would go away……. on antibiotics should take care of it in a few days.

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