[GDRobM]

#1067239

Patti, hang in there. You will feel better once the medication starts to work, and like everything with graves things take a little time. I am about 2yr post diagnosis and was on carbimazole, and after a little while all was stable and I felt pretty good most of the time and ended up on 10mg per day. Then about 4 months ago, I had to go from ten to 30mg per day and my thyroid kept getting more active. I decided to do RAI, and now I feel good again although I am in that part where I am not on any medication but will probably have to take thyroxine before christmas. So although you feel pretty average now, just hang in there, day by day things get better, and as for treatment, thats your choice and there is no better way to go than the way you feel comfortable with, but medication is essential and you will be able to get off beta blockers and get back into feeling normal… get that thyoid to behave! I am in Australia and it’s interesting to note that the way graves is deal with here is a little different than the US from what I have seen in this bulletin board. Here most people are given carbimazole for about 18 months to see if the thyroid goes into remission before RAI is considered being used, while often in the US, RAI is the first form of treatment…. in the end though, most people will end up having to consider RAI, although my endo tells me that a few people do opt to remain on medication long term… take care…
Rob

[Ski]

#1067240

All of our treatment options have their pros and cons. The medication, IF it causes difficulty, can be stopped and the complications will reverse. In the meantime, it is very much an advantage to go into RAI with normal thyroid hormone levels ~ that way, if you experience the "dumping" effect (not all patients do), the overall effect will be less. If you begin with relatively normal thyroid hormone levels, the dumping can only elevate your thyroid hormone levels so much. That may be the reason behind your doctor’s desire to lower your thyroid hormone levels prior to RAI.

STILL, the happiest patients are the best informed patients, so do all of your research into all three potential treatments (ATDs, RAI, or surgery) before making an absolutely final decision. In the meantime, it’s typically recommended that we at least try methimazole in order to bring our thyroid hormone levels down and give us a chance to begin healing and thinking straight again. It’s impossible to understand how wacky our thought processes are until they’ve gone back to normal….

[nmacret1]

#1067241

You go! I don’t know that there is anything "normal" dealing with this, from my diagnosis in 2001 to RAI treatment was 3 weeks. The doctor would only tell my that A) I should have been fired from my job a long time ago and I was lucky to still be alive and C) I had enough T4 in my system for 6 normal people.

Your legs will get better, don’t stop walking!. Make sure you have a bone density scan now and in a year to make sure you don’t need prescription doses of calcium to save bones and teeth. I went undiagnosed for over 10 years and had lots of damage as a result.

I don’t know that I "dumped" after RAI, but it took nearly 6 months for me to convert to "low".

Happy Thanksgiving, you are in my prayers.

PS, Tell your family they will survive this too!

Nancy ” title=”Cool” />

[PAT1953]

#1018804

I have been diagnosed with Graves today. I had a feeling that was what the Dr. was going to tell me after my uptake scan was done last week. Results were Diffuse Toxic Goiter/Graves Disease. My percentage of uptake was 37%(normal 10-30%) My blood test were T3 at 498(normal 80-180)Free T4 1.78 and TSH 0.01. My symptoms are all classic to Graves. I’m 57 years old. The heart, nervousness and sleeplessness were the most bothersome. Been taking beta blocker for about a month and Xanax to sleep. Now I’m getting weaker by the day, expecially my arms and thighs. Also edema now. I feel like I can’t concentrate enough to carry on any intelligent conversation. My current endo started my on 15mg Methimazole today and said to continue the beta blocker until Methimazole kicks in. Since I am pretty sure that I will do RAI he said he wanted to bring my levels down first. On Dec. 10th I go to the Endo that will make final decision if I can do RAI. Endo said due to my age and heart age they want to get the ranges more normal before RAI. Is that how it is usually is done because of the dumping after the RAI that could cause me problems, or what? I’m scared of the dumping stories after RAI I have read about. I already feel like I could jump out of my skin and the heart races I have.It could be worse? I’m pretty sure RAI is the way I want to go, because my body doesn’t tolerate pills well. I just know this Methimazole is going to give me problems. Drugs always do. Is15mgs a pretty high dose? I just need a little encouragement. I’m kind of scared of this whole thing. I appreciate any help with my concerns and questions. Thanks………Patti

[Bobbi]

#1067242

Getting treated, one way or the other, is an absolute requirement. Which one you choose depends upon you and your doctor.

It is not uncommon to go on the methimazole (or PTU) with the diagnosis. The thyroid not only makes thyroid hormone, it also stores it for future use. (This is basically what is released during "dumping" after RAI — the stored thyroid hormone. The damaged cells are not making much "new" hormone any longer, as they die out, but they do dump their stored supplies.) So, going on an ATD like methimazole can lower the overall amount of thyroid hormone available to the body, and make us safer and more comfortable post-RAI. That said, typically we do have to go off the ATD a week or so prior to RAI. That is to open up thyroid cells to the radioactive iodine. If the cells are blocked with the ATD chemical, they cannot take up as much iodine. So the whole thing is a balancing act. They want to get the overall levels of thyroid hormone down, but allow for enough RAI to get into the cells to do the work it needs to do.

The methimazole does start working instantly to block the production of new thyroid hormone, but you may not feel it right away because the stored supplies are still available and being released. It can take a week or two to "feel" a change.

Given your symptoms, your doctor may have instructed you not to exercise. (You may not even feel like it!) But if you have a rocking chair, you could sit and rock, and that can provide the muscles with some, small "exercise." I also did gentle stretches when I couldn’t walk well, to keep my leg muscles "toned." I don’t know if it did much, but I felt like I was working to keep me healthier, when I couldn’t strength the muscles any other way.

I do hope your treatment goes smoothly, whichever one you choose, and that you are feeling better soon.

[PAT1953]

#1067243

Thanks everyone for the input. I really appreciate the extra information. I’m the type of person that has to be well informed. I feel better when I have knowledge as it empowers me to try my best to overcome. This has me in an emotional tailspin right now. I will try my best to take each day as it comes and not get so down. All I can think about is the awful things this disease causes and I’m the breadwinner of my family. I work 1 job full time and have a part time job I do at home on my computer. I’m office manager at one business and do all the bookkeeping and payroll. And I do bookkeeping and payroll at home for the other job. I worry I won’t be able to keep up the workload, expecially about the eye part of the disease. I’m called an eye doctor soon. Thanx again.

[Author]

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