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in reply to: One year from RAI #1065514

Just heard from endo today on new blood work results. My TSH is now 4.4, the lowest it’s been since I went hypo last September. He suggested staying with my current dose- 106mcg per day with week split between two different doses and see how that does over the next few months. Maybe this time I will be able to start to get some of my other health issues ( fibromyalgia, osteoporosis from the Graves and menopause) under control if I’m not changing my dose again and again. Long time since I had this much hope that I am getting well………… ” title=”Very Happy” /> My retiring endo also gave me two referrals to two other "great" docs who treat Graves patients in the same practice.

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in reply to: Switched Endo’s continued…but I Guess I’m just crazy!!!! #1065490

So sorry that you are feeling so unwell. Been there done that…….. I went off methimazole cold turkey because I wanted to have RAI. It took me 9 months to get down to low enough levels that they would give my the RAI. It can be a long hard road. I would keep a diary of symptoms and feelings including BP, pulse, sleep what meds you took that day etc. so that you can see any patterns emerging. Watch out for weight loss, tremors any symptoms that are Graves related. Other things can cause the same things to happen but if your GP says you’re good otherwise it might be time to push harder with your endo. I had to show my endo the pattern in the drop of the TSH and free T-4 over time when I was going down. He only looked at the last test and compared it to the new one. The normal levels are a lab average not you personally. Maybe your GP can help you out with talking to the endo if you can’t seem to get her to understand that you aren’t crazy. My GP knew that something was really wrong with me even though we had to hunt to find out what it was at first. My actions and symptoms were just so out of character for me that he was convinced that I was really sick.

Hope that today things seem a little clearer for you. I know the ups and downs are really awful.

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in reply to: One year from RAI #1065512

Susan,
I started out slowly on 25mcg. I am now taking 100mcg 4 times a week and 112 mcg 3 times a week. I was just having blood work done routinely about every 6-8 weeks because I still haven’t found the right dose. I always thought that my symptoms were still showing things weren’t right but can’t pinpoint that for you because sometimes I was wrong. There was one 6 week period when things didn’t really change at all but I was thinking that from the bad way that I felt that surely they had. My endo just wanted to keep checking things until we got the right place…… which I don’t feel like is now but I haven’t gotten back my latest blood work yet. I’ll post when I get it to let you know. I think that I have gone over into hyper again because of my symptoms: tremors, not sleeping well, periods getting closer together, fatigue, brain fog etc.. My endo said that he has had patients report that they felt hyper when they were first "at normal" levels again after such a long period. Said he couldn’t explain why but that it does happen.

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in reply to: One year from RAI #1065510

Susan,
I have been on a different dose about every 6-8 weeks since I became hypo. As I mentioned I am still not at the
"right" dose at 8 months out from that first one. It is very hard to wait for the new blood work numbers but the 6-8 weeks is the time you have to wait to see if things are really changing. I had blood work done on Tuesday and the doctor didn’t call by yesterday so I may have to wait until Tuesday of next week! He was checking a few other things besides TSH and free t-4 so that may have held things up. I hope that you are feeling well today.

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in reply to: NY Times piece on thyroid disease #1065500

It was good to hear the voices behind the people. I think that this may make this real for some who doubted that this can really affect their lives/health. There are many ways to deal with Graves but you have to deal with it, not let it take you.

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in reply to: Watch Illinois Support Group mtg tonight at 6:30 CST #1065647

It was last night- Thursday- and the speaker was good. They were going to record it but I don’t know where that link will be.

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in reply to: 5 months post-RAI…feel good but jittery pulse #1065609

Glad to know that things are getting better for you. Are you off caffeine totally? Are you eating right before you try to go to sleep? I know that my pulse goes up about 30-45 minutes after I eat. I am having some issues still getting my levels right too on levoxyl. I still have hyper feelings and tremors some times. Make sure you are well hydrated too before you lie down. Maybe it will resolve itself soon. If not I’d be back on the phone to the docs to tell them it keeps you up.

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in reply to: Graves and Stomach Issues #1065660

I had some of the same issues when I was very hyper. I have been taking acidophilus capsules ever since then to make sure I have good bacteria in my gut. They did help me feel better. As I have been getting closer to normal levels after RAI last year my issues are disappearing. I also used the People’s pharmacy "cure" of eating coconut macaroons when I was having lots of BMs. The coconut seems to help slow things down.

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in reply to: nausea, loss of appetite, other symptoms on synthroid #1065680

I have hypo and hyper symptoms it seems. I think I am just not at a right dose yet so my body swings back and forth with things. I also have fibromyalgia so I blame some of my things on that. The tremors and the sleeping in the afternoon were never symptoms I’ve had with fibromyalgia though so I think those are thyroid related at this time. I will go in on May 11 to see where I am blood wise. I had my dose changed/lowered to 100 mcg four days a week and 112 three days a week about two weeks into my new 7 days of 112mcg. The tremors were really bad then. They haven’t gone all the way away yet but are better. I hate waiting so long to get blood work done too. I have my busiest time at work coming up with the end of school for the kids and I hate to have to change doses again right before that but I will if I’m not on the right track. I need to get healthy! Right now I am really sore because I did a lot at work today. I go back and forth between I’m getting better look at what I did today to OOOOOOOHHHHHHH I feel rotten today. Wish it were easier on everyone with Graves. Let us know what your endo thinks.

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in reply to: Can methimazole dosage cause Hypothyroidism? #1065650

I went hypo on methimazole when I was taking it. They backed off my dose and my numbers came back down.

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in reply to: nausea, loss of appetite, other symptoms on synthroid #1065676

I am also trying to get the right dose for replacement after RAI last May. Went hypo in Sept of last year. I was on 100 and felt pretty good. I had a normal t4 and my TSh was 14. Doctor went up to 112mcg. A few weeks into that I started having familiar feelings of hyper symptoms. Talked to doctor we went to 100 four days a week and 112 three days a week. The tremors have started to go away. I think that we flew over the right dose but I won’t know until May when I get blood work done again. I think my TSH was really lagging behind my other numbers. Hope that you talk to your doctor on Monday and write down all your symptoms. You might have jumped over too.

Feel better,
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in reply to: Questions about "Mild Graves" #1065694

I was always a case of "that can’t be your thyroid causing that" because my numbers weren’t classic. My GP suspected it and an cardiologist I went to see too because of the pain in my chest. It was my endo who said I had Graves even though I didn’t have all the classic symptoms at once. I did have a family history and my uptake and scan showed classic Graves. I’ve never had the antibody test come back positive either. After three years of ATDs- hypo on them to off to no remission and being very sick sometimes I was finally low enough on my TSH to have RAI. You are right that you know when you are not right. I am not right right now trying to get my correct dose of replacement hormone after almost 8 months since going hypo after RAI last May. I know better than to think all of it’s my thyroid levels but I need that to be right to level my playing field. Then I can work harder on getting my other issues under control.

Please do tell those who need to know that you have Graves. It may get worse for you before you get better and I have learned that I am not irreplaceable and that others can pull their weight for me some times. It is a hard road but you are on the right track and sound like you are a strong person. Good luck with your treatment and I wish you better health soon.

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in reply to: ATDs #1065738

Corinne,
I know the scary feelings but I didn’t want to feel like I was going to feel bad forever. I am middle aged and have teenage kids. I really missed out a lot on their lives in the last three years. I feel now that I won’t be "off’ forever. I think I am close to getting the right dose of replacement hormone after about 8 months of trying. I think we actually overshot a little this last time so we have dialed it back. I am also going through what I think is menopause so I am dealing with more than one thing, oh also have fibromyalgia. Hope that your appointment goes well. Make sure you make a list of all the questions you have about the RAI. I had many……. There are lots of posts here about what it entails and what happens afterward etc. in the archives. Just search RAI.

Congratulations on finishing your semester. That can’t of been easy. I couldn’t even get to work most days when I was really bad ” title=”Very Happy” />

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in reply to: ATDs #1065735

It took me several months to really start feeling better. It could be that your dose isn’t high enough yet to make you really start to feel better. I will say for me that I never really felt normal again on ATDs. I wanted RAI from the start but was talked into trying ATDs. Went hypo on them, had to go down on them. Went hyper again after asking to get off so I could have RAI. It took me almost a year to go hyper enough to get RAI. If you think ATDs aren’t for you and don’t want surgery then personally I wouldn’t wait on ATDs to work for you anymore. Others have had a much different experience. Hope that you feel better soon.

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in reply to: EYE LUBRIDANT, EYE DROPS #1065781

Don’t forget to ask your eye doctor for samples. They get them all the time. My Mom gets a bag full every time she goes.

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