[Anonymous]

#1164697

Sara. . .welcome. I’ve sent you an email, and I invite you to go to the NGDF homepage linked here, and join. Many informational bulletins are available. Good luck!
Dianne N

[Anonymous]

#1056897

Hi Everyone!
I am a very confused college student right now. I just returned from the
endocrinologist with a diagnosis of Graves’ disease. Now…I don’t know
what to do??? Any suggestions?? Surgery and iodine both sound scary,
but I don’t know about taking all those drugs either. If anyone has
any comments, PLEASE write back. Thanks
Sara
P.S. How about getting your concentration back? Do beta-blockers
help?

[Anonymous]

#1164698

Hi, Sara. Welcome to the Board. I second the idea of you getting FA Q sheets, checking out books on the subject from the library, and starting to research your options. I also recommend that you don’t think you have to make an instantaneous, permanent decision. You need to do something to start getting the thyroid hormone levels lowered, but the antithyroid drugs can do that for you, while you are doing your research. Many of us started on antithyroid drugs, and then either opted to continue them or try RAI. There’s breathing room in this course — time to get used to the idea of having Graves, and learn about the options. You most likely can eliminate the idea of surgery. It isn’t used much any more to treat the hyperthyroidism, because RAI is safer, cheaper, and works just as well in most cases without the physical trauma of surgery.

As far as concentration goes, being hyperthyroid does play havoc with it in a lot of cases. The beta blockers basically make you more comfortable by slowing down your heart rate, and calming tremors, but I don’t know if they help the concentration.

Take care,

Bobbi

[Anonymous]

#1164699

HI SARA,

I WAS HYPER AS YOURSELF AND HAVING THE SAME TROUBLE WITH CONCENTRATION, ATTENTION SPAN
WAS GONE, HOT FLASHES ALL THE TIME, HEART RATE THAT MADE ME FEEL LIKE MY HEART WAS GOING TO COME OUT OF MY CHEST, TREMBLING
HANS AND LEGS AND OVERALL FEELING THAT I WAS LOSING MY MIND.

I WAS DIAGNOSED WITH GRAVES IN JAN. I WAS GIVEN RAI AND WENT FROM HYPER TO
HYPO. MY CONCENTRATION WHILE HYPER WAS REALLY SCREWD UP BUT SINCE I HAD
THE RAI AND AM GOING HYPO IT’S GETTING BETTER. I AM TAKING BETA BLOCKERS TO
KEEP MY HEART RATE DOWN AND STOP THE TREMBLING THAT I HAD. SOMTIMES IT FEELS LIKE
I AM GOING HYPER AGAIN, MY HEART RATE GOES CRAZY AND MY HANDS SHAKE, I DON’T
KNOW WHY BUT IT’S NOT AS BAD AS IT WAS. I GUESS THAT MEANS THERE IS HOPE FOR ME YET.

I GUESS NOW THE WORST PART IS WAITING TOO SEE IF ANY OTHERS SYMPTOMS APPEAR. I FEEL
LIKE I’M IN LIMBO AND THERE US NOTHING I CAN DO UNTIL MY LEVELS GO LOW EONOUGH AND MY DOCTOR CAN START
ME ON MEDICATION.

TAKE CARE,
SUE

[Anonymous]

#1164700

I know how you feel. I am your age and it’s scary to go through this now. Worrying about college and everything else. I have been on PTU for 2 years now. I was supposed to have RAI last summer, but I was pregnant. Now, I have a little boy. So, now I will probably have RAI this summer. I know it’s hard. I lose my concentration so much and get alot of dizzy spells and stuff. I dread having RAI because you can’t be close to anyone for 3+ days; I hate the idea of not being able to hold my baby for that long. Don’t worry yourself too much. It will only make you feel worse. I know I did cry for like 2-3 days when I found out I had Graves. But it is better to be treated than not. I do look forward to my RAI, just because it is supposed to make you feel better. Good luck! If you ever need anyone to talk to, e-mail me!

[Anonymous]

#1164701

I am still really angry about my eye visit yesterday. I did call my new endo who does refer her patients to a different set of opthomalogists than I went to the last 2 times, both doctors whom insulted my mom and this last one who didn’t get one thing right and had the nerve to say I don’t have Graves. I am not usually a complainer and find it somewhat difficult to be aggressive, but boy am I learning! We pay high insurance costs because of these doctors who treat people unfairly. I know I will have to write a letter, but trying to calm down some. Part of me is on edge because I am in week 3 now of the test by new endo (higher synthroid dose than ever before), so I know some of that is being hyper. I do feel better, but still don’t notice alot of energy that I need for simple tasks. And I find myself more forgetful than ususal. I am glad this dr suggested a thyroid scan before just ordering another dose of RAI. Hope this next week before the scan, goes ok and I don’t get out of control. My fingers also are real crampy and achy. Does anyone else have that problem?

[Anonymous]

#1164702

I have Graves disease and SLK(very dry eyes). I had radiation therapy Dec. 14, 2005(THS at .03). 4 weeks later did blood work and it showed my THS at 1.3 Now 8 weeks after Radiation therapy my THS is at .02. It’s worse than it was before the radiation therapy. I’ve been seeing my GP and in 2 weeks will begin seeing an Endo. What should i do and what should I expect

[Anonymous]

#1164703

You need to bring a copy of your blood work for the endo to see, and your current list of all medicine that you take. The TSH is the slowest to recover, it can take 6 months sometimes. After RAI they don’t do anything for the low TSH it depends on your T4.

You should expect him to ask you a lot of questions about how you feel, he will discuss your RAI. He examines you neck and sometimes while he feels the thyroid he has you swallow water. They usually test your reflexes also. That’s about all there his to his exam.

[Anonymous]

#1164704

Try to keep in mind that the disease is autoimmune: it is caused by antibodies revving up the production of thyroid hormone in thyroid cells, and none of the treatment options do anything about antibody levels. So there are lots of bumps possible in the road to recovering. RAI is thought by some to stimulate an immune system response — this is how they explain a temporary increase in eye symptoms after RAI. And if an enhanced immune system response could create increased symptoms of another autoimmune disease, it also means that the antibodies causing the Graves would have increased in numbers, and this would raise the level (temporarily) of hyperthyroidism. You would expect it to fall again, once that temporary immune system response was over.

Do not think, however, that all of this means that your RAI did not work. It might have. A rule of thumb with RAI is that we must wait about six months to be sure how well it worked. Eight weeks is still early on.

I do hope you are feeling better soon.

Bobbi — NGDF ONline Facilitator

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