[Madame_X]

#1074526

As you know, "bedside manner" is extremely important.

I’d start looking for a doc you can talk to and one who will sit and listen to your questions.

If you’re learning in a teaching hospital, you probably know which endos are the ones you’d like to handle your case.

I’m also not crazy about the fact that he pushes RAI so much.

[Mickey65]

#1074527

Your endo should have gotten you on beta blockers to help with your heart rate and tremors. Once I started taking those, I felt a sense of calmness I didn’t feel before I started them.

My endo also STRONGLY suggested RAI on me, but at least gave me the chance and time to research the other options.

1. Surgery – was too invasive and didn’t want a vocal chord accidentally knicked!

2. Pills for 2-3 years – a possibility of liver damage and also them not working and ending up with RAI or surgery anyway!

I chose RAI and had it done a month ago now. My hands have stopped shaking, my heart rate is lower, and I already feel better – altho I’m still healing and I have some time to go before I got on my thyroid replacement pills.

I feel really good about my decision to do RAI. I had NO ill side effects from it, and it just seemed an easy treatment, and plus according to my endo – the safest way also.

[elf]

#1074528

– PTU is supposed to take care of hand tremors and heart palpitations. If yout FT3 and FT4 levels are within norm, there should not be tremors and palpitations. If you still have them, then you and your endo should be searching for levels (adjusting PTU amount) that agree with you (there are ranges for FT3 and FT4, some people feel better when their levels are closer to upper or lower side of those ranges).

– no, there is no other medication other than ATDs (Anti-Thyroid drugs), of which PTU is a representative.

– you don’t really want to wait until your case will be severe enough, because that may end up in a thyroid storm (petentially very dangerous condition), or you won’t be eligible for RAI.

– some people don’t lose weight with Graves, and some even gain weight – though they are in minority.

– thyroid eye disease is a separate disease. It may start together with Graves, but it will take its own path, regardless of your treatment. Nobody can predict how it would proceed in your case. For some people, eyes don’t change. For some, after mild protrusion, the eyes settle back. Sometimes there is no protrusion but lid retraction (the stare effect). Sometimes, there is everything, eye protrusion and lid retraction. There are some treatment choices (surgical, steroids and radiation, – no medication), but the surgery won’t be done until your eyes settle, that is, until you don’t have any feelings (tearing, sandy, gritty – nothing). That "burning out" process could take from 6 to 18 months.

– if your vision is compromised (double vision or the optical nerve is squished), external radiation or steroids can be applied. Though steroids relieve the pain, you want to steer clear from them because of the side effects, that is, they would be done only if really necessary.

– before worrying about eyes, you need to decide which treatment path you would like to pursue. There is a choice of staying on PTU – some people achieve remission and stay off any drugs. Others take RAI or undergo a surgery to remove thyroid. You need to research, research, and research before making a commitment. As you can see from posts on this board, it’s a hard choice sometimes to make. Don’t allow yourself to be pushed by anyone. Do RAI only after you researched about RAI and feel comfortable. As well as with the rest two treatments.

– View it not as a disease but a process, a syndrom. There are no quick fixes here. One way or another, you will be taking something for life. This disease requires a lot of waiting regarding eyes.

– Research, research, research.

[torri33]

#1019847

I have so many questions about this disease, my Endo is not very personable and doesn’t explain much. I was diagnosed in September and have actually had normal levels for about a month already on the PTU. My levels were on the low side of high to begin with T4 was normal, T3 450 and TSH .100. All my Endo does is push RAI, my most severe symptoms are tremors and palpitations. Unfortunately I havent even lost much weight, my eyes tear but just in the am. Does everyone with GD end up with some kind of eye symptoms? Is there anything out there to take for the tremors? My Endo tells me there is nothing but I know to much to believe that. I am in my last semester of nursing school and really need something to control the tremors. I dont want to have the RAI yet, I just dont think my case is severe enough yet. If you do develop eye problems can it be fixed? Do they go back to normal on thier own? I know I have so many questions, I am so thankful to find this site and would appreciate any feedback. Thanks Torri

[torri33]

#1074529

Thanks for taking the time to answer all of my questions there were a lot. I have been researching my options, but I do think my Endo should be explaining things to me. I live in a small town and I think I am going to go out of town for another opinion. About the Beta-blockers my heart rate is only in the 70-80 range so a Beta-blocker could make me bottom out. At least that’s what my doc has told me when I complain about the palpitations. The tremors are worst in the morning and of course when I am nervous. Thank you again for getting back to me.

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