[Anonymous]

#1022493

Well I have had quite a while to think about things and I am starting to question my decision about having surgery. I really thought that the surgery may be the answer for me a quick fix you say. In reading some posts and talking with people I have learned that there really is no quick fix.

My question to anyone who has had the RAI how did you handle all those hyperactivity feelings during the time you had to be taken off your medication, having the uptake and then having the RAI. I hate those heart palpatations and the thought of having them again bothers me. I have ready some articles about people who have gone into thyroid storm after receiving the RAI. Has anyone had problems with this? I am taking a beta blocker but it really doesnt help alot with the palpatations. It does regulate the heart beat but doesnt do too much for the palps. I havent had any in 3 weeks now since my numbers are stable again and it has been wonderful.
katie

[Anonymous]

#1082928

As I understand things, the palpitations themselves are not necessarily bad or dangerous symptoms. Check with your doctor, but mine never seemed to get overly concerned about them, once they knew that I had Graves. If they are not, in and of themselves, dangerous, then you could perhaps get rid of the added anxiety you feel when you can feel them. I would ask my doctor, if I were you.

Actual thyroid storm is rare, and what some folks panic and call storm after RAI is really an enhanced period of hyper symptoms for a handful of days. This is caused when the dying thyroid cells release their stored supplies of hormone into the body all at once. They are (unlike in actual thyroid storm) NOT making new hormone to continue to dump. In storm, cells are continuing to produce new hormone to pour out, and it is a life-threatening situation requiring emergency medical intervention. There is a difference, in other words. So, while it is unpleasant for two or three days, about one week after we take the RAI, it is not necessarily worrisome, if you know what is going on. Again, ask your doctor fo r his/her opinion (about the likelihood of true storm, vs. the “dumping” that heightens our symptoms briefly after RAI, etc.)

My endo gave me a range of beta blocker pills to take per day, depending upon my symptoms. I think she allowed me to double my dose (which was already pretty high), as needed. And, quite frankly, it helped a lot. I only doubled for two days. Perhaps it gave me a sense of control? I don’t know. I just do not remember it being a big deal.

I hope this helps,
Bobbi — NGDF Online Facilitator

[Anonymous]

#1082929

Bobbi,
Thank you so much for your input. It really does help. My Doctors never seemed concerned about the palpatations I was the one that was always worried about it. She did mention doubling up on the beta blockers if I chose the RAI route.

Thanks for your help!!
Katie

[Anonymous]

#1082930

Hi carmel,

The ATDs have a pretty good track record overall for effectiveness — meaning they bring down thyroid hormone levels in most patients who take them — and remission can be achieved by, I think the number is about 40% of patients.

As far as diet change and holistic remedies, they may do a lot to help alleviate your symptoms, but nothing other than ATDs, RAI or surgery has ever been proven to alter thyroid hormone levels. We’d all love to have a therapy like that which would “take care of” our Graves’ Disease, but the fact is that the antibodies exist, they cannot be eliminated, and they will attack our thyroid (at least intermittently) as long as they are there. Still, just the reduction of stress and alleviation of symptoms can help a lot in your day-to-day life. I’m not impugning those means — I’m just pointing out that they will not “cure” this.

Oh, one BIG caveat. Don’t let anyone tell you that KELP is a good supplement for you. Kelp contains such enormous amounts of iodine that it is the only dietary substance that might have the potential to *raise* your thyroid hormone levels, and of course you don’t want that. It’s the only restricted substance for us, as far as I know.

I wish you much luck in your choice of treatment!

~Ski
NGDF Assistant Online Facilitator

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