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in reply to: Heartburn.. #1066236

I had bad heartburn for several months when I was first really sick. I wasn’t even on methimazole yet. I took a lot of zantac those months. Keeping something bland like crackers or a plain bagel around to keep my stomach a little full helped me.

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in reply to: Post RAI -In Range TSH – Still Feel Bad? #1066281

Sandy,
I feel like you have been in my shoes for a while. I too had RAI in 09 and went hypo in September. I am also about your age and going through peri/menopause. I just had blood work done yesterday. I am now on 100 of levoxyl. My TSH wasn’t coming down much at all, still 25 last time. I go back and forth between good days and rotten days. I still cannot exercise and have too much weight on which make me uncomfortable. I know that the swings in estrogen can cause problems with hormone binding from what I’ve read and heard here. I am not so sure that all my issues are thyroid at this point. I have not had any eye involvement other than dryness. My pressure was off last year but this year it was back to normal in both eyes.

I have fibromyalgia, for 16 years, and that is not under control as I haven’t been able to really exercise. I think that menopause can cause some of the same symptoms as thyroid conditions. I am trying to learn more about that.

Maybe now that you are in normal range you can start to feel better. I am crossing my fingers that when I get my results this afternoon they will show a big move toward normal. I know that people on this board have said that until you stay in normal range you can’t really start to heal. I am looking forward to that. I am better than before the RAI but still miffed that it’s taking so long somedays. Only 6 months on replacement though so I guess I can’t complain too much.

Sounds like we are two birds of a feather. This is a good place to flock together.

Feel better,
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UPDATE: Just got my results back and I’m still in hypo range on my TSH- down to 14.317 from 25. I guess 100 isn’t enough. Glad to know I’m still getting better though.

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in reply to: Symptoms of too much replacement #1066332

I am now on 100 mg of levoxyl after RAI last May. This is my fifth dose change. We went very slowly. I felt a lot better when I first started this dose but the last week or so, almost six weeks on this dose, I too am feeling some hyper symptoms. Mine too aren’t as bad as when I was really sick. I am hoping that some of this is my weird menopause estrogen swings affecting things. I also wonder if my body is saying OH BOY lots of hormone to work with and it’s just not settled yet. I hope to go for a blood draw tomorrow morning. It will be six weeks on this dose then. I don’t expect that I have gone hyper in numbers but you never know. My last tsh was still 25.

Hope you feel better soon.

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in reply to: What to do??? #1066388

I had a rash on generic methimazole and not on the brand name. There is a difference in some of the fillers in these medications. My old posts talk about my experience.

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in reply to: Afraid of RAI #1066427

Annie,
There are lots of stories here about RAI and how it went for different people. I was just so glad to get something that would help make me start to get well again. I went on anti-thyroid meds and didn’t have good luck with them. RAI was, for me, a better option than surgery for personal reasons. Whatever you decide just know that you will start to feel better at some point. The waiting stinks but you have to choose something as Graves will not get better on its own. Search through the old posts here and you will get lots of information. I have a daughter with autism so I know your pain as parent of a special needs child. I always felt so much guilt at not being able to do what I needed to do. I will say that it made her more independent and my husband learned a lot too in the past three years! I am now getting a lot better and know that I will be able to counsel my kids if they end up with this disease later on in life. As I look back on things now I know that I was not at my best for many years before my diagnosis. You will be able to decide on something with information. I had a rash on the anti-thyroids and have had no trouble at all on replacement hormone. Just keep reading when you have time. Hope you feel better soon.

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in reply to: Is there anybody out there? #1066432

Hi Magnus,
Welcome to the club here. There is lots of information and lots of empathy here as we have all been through a lot with this disease. The facilitators will be able to answer some of your more technical questions. Sounds like they have started you on an anti-thyroid medication. They are called different things in different languages. I hope that you will start to feel better very soon. Graves Disease can be so different to different patients. You will find some things you read here very familiar and some are just bizarre to your personal case. Just keep thinking that now that you have a diagnosis you can start to get healthy again.

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in reply to: Still Graves? #1066663

I’ve had fibromyalgia for almost 16 years. The fatigue and muscle pain sound like they might be. I’ve also never heard of it raising a person’s heart rate at all. Are you possibly going through menopause? I know that it can cause many of these symptoms, ask me how I know…….. Also I would think it would be worth asking about lowering your dose of replacement hormone to see if these symptoms got better over several months. I’ve heard here many times that as we age our needs change for levels of replacement, in other words what was normal at 40 may not be normal for you at 49 now.

Hope that you feel better soon.

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in reply to: Need some encourgement please! #1066692

I have mostly been using the Wii Fit program to work on my balance. I have tried a few of the slower aerobic games. Most things last only a few minutes for one go so they weren’t getting my heart rate up very high at all.

I really didn’t have any pain while I was doing it so I guess I’ll have to limit my time so I don’t get into this state again. The pain and suffering was latent so stopping when I felt bad didn’t happen, I got no signal from my body. My goal is to work my way back to somewhere near my old self. I don’t always remember how long it’s been since I was my old self. Going on three years now. Time does fly doesn’t it…….?

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in reply to: Need some encourgement please! #1066689

Question for those who have or are getting back into shape as they heal. Did you find that it took you much longer to recover from a workout, however light the intensity? I worked hard on Sunday afternoon and yesterday afternoon I was really sore. This morning, Tuesday, I work up having tremors in my hands. I thought that that had gone away for good. Do you think that might be muscle memory acting on my fingers now when they have been used a lot? My legs are also feeling not as sore today but I’d rather not walk too far. I felt very wobbly and somewhat off kilter. I am going to keep trying on the exercise but maybe I should do only a few minutes at a time?

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in reply to: Need some encourgement please! #1066688

Hyperm,
I love my Wii Fit but be warned. It can be so much fun that you over do it early on. I did 38 minutes last night and now I am paying for it….. Sore, sore, sore. I really didn’t know that my balance was so bad but it is. I need to really work on that I decided before I get my cardio in gear. I too have the shakes when I over do it.

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in reply to: people just don’t understand, and i don’t either. #1066789

Hyperm,
Glad to hear that you are making progress. Maybe you could make a button for yourself that says Graves Disease under control now, I won’t bite

I am getting there too. Finally got a dose of replacement that feels like it’s helping me cope.

Hang tough as they say….

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in reply to: Magic Wands needed #1066679

Nancy,
Try looking online at the Oriental Trading Company. They usually have these kinds of things. There are usually web coupons out there too that you can use on shipping or percentage off. Just google Oriental Trading Company coupons.

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in reply to: No official diagnosis yet… but… #1066795

Ask your primary to fax your lab results and symptoms to the endo and see if they will bump up your appointment date. I’d make some noise for yourself. A lot of us have been through this with doctors and you’ll have to learn to advocate for yourself. Hope that you will feel better soon.

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in reply to: Too much levoxyl? #1066957

Heard back from my endo today after I sent a fax with all my symptoms, lab results etc.. I even added my phone number and the phone number of the drug store etc. so he wouldn’t have to look anything up and it worked! He got back to me post haste. He said that my thyroid is still loosing function and not catching up with my replacement hormone levels. He is taking me from 75mcg to 100mcg for 6 weeks and then more labs. Hopefully this will start to make me feel better soon.

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in reply to: Too much levoxyl? #1066955

OK,
Got my 6.5 week labs back and my TSH hasn’t budged. Still at 25. something. Does that mean that my awful symptoms are still being caused by too little hormone being available? I am having awful muscle pain now and am having to take naps again in the afternoon. Still really cold a lot, though sometimes I am really hot. I thought that was the heat being on too much in my office. I thought I might be getting too hormone much but the test certainly says otherwise. Should I ask to be bumped up more than 12.5 mcg again? My FREE T-4 didn’t get done for some reason so I don’ know if that is in normal range. My other numbers that I didn’t ask for like T3 free thyroxine etc. have moved back into normal ranges. I am on 75mcg now and since it didn’t move any in the past six weeks and the number was actually just slightly lower, 23.something, after my time on 62.5 mcg as well, I really think I need a bigger jump. Has this happened to anyone else as they try to get settled on a dose of replacement? I know they like to be cautious but I am tired too much and hurting too much for my liking now. Won’t hear from the endo until next week.

Thanks,
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