[superdave]

#1017967

Three weeks after being diagnosed with Graves and all the talk from my Doctors is RAI! I’m just a little tired of the heart palpitations. How dangerous is this treatment? How effective is it? How fast do the hyper symptoms go away. I’d be happy if i could get rid of the heart palps and get some muscle back.

[Bobbi]

#1061896

Hi, and welcome to our forum.

First off, our RAI treatment is not "dangerous," except in relation to the degree of health damage already caused by being hyperthyroid. So, in some of us, it might not be advisable. But for a lot of us, it is a reasonable treatment path back to health.Obviously, I131 in uncontrolled amounts can have adverse health consequences. But since doctors started using it to remove bad thyroids –fifty or sixty years ago — the science community has run study after study to determine whether there are long-term adverse consequences from using small, measured amounts of it. (Which is what we get.) Specifically, they’ve looked for cancers. But there was also a study a few years ago looking at death certificates of tens of thousands of folks who had had RAI , looking to find any statistically relevant causes of death that could be attributed to RAI. In that study the researchers determined that the primary elevated causes of death in those death certificates were because the individuals had suffered from hyperthyroidism, not that they had experienced the RAI treatment.

Typically, our endos do offer us the option of trying the antithyroid drugs first. While these drugs do not cure hyperthyroidism, they have a reasonable track record of controlling it in most patients. And, some of us do experience remissions after being on the ATDs for a while. (About 20-30% of us experience at least one remission — defined as being symptom free, without drugs, for a period of a year or longer.) There are, however, side effect issues to consider with these drugs.

Some of us also choose to remove our thyroids surgically with thyroidectomy.

I assume you have discussed these other potential treatment options with your doctor. But if you have not, you might ask your doctor why the emphasis on RAI. There can be logical medically based reasons for "pushing" any of the treatment options, but you need to feel comfortable with the decision.

What you should not do, however, is dither with no treatment for the excessive levels of thyroid. If you are on the drugs currently, that will allow you time to decide if you want RAI or not. If you are not on the antithyroid drugs, however, you cannot afford to put off a treatment decision for very long. Hyperthyroidism is far more dangerous to our long-term health than any of our treatment options.

[superdave]

#1061897

Thanks for the timely response. I am on Methimazole and my heart palps have increased tremdously. Not good! I’m on Metoprolol and Rythmol. Over drugged maybe. I understand that this can be a slow process, but with all the symptoms I’m experiencing, something has to give. The doctor didn’t explain the treatments to me. I’ve researched extensively and I’ve educated myself on my options. I’m sure many of us with Graves have researched the options. For my own personal knowledge, I would love to hear some positive comments about RAI. Every treatment has it’s side effects, but I want to hear all those positive comments about RAI.

[snelsen]

#1061898

I am writing to expand on Bobbi’s good information,and to make some suggestions.
1. *If you heart rate is still rapid, not "ok" this should be reported to your endo. The problem may be that you are undertreated, not over treated. When you are at the beginning of Graves’, there is no way to know which doses of ATD and beta blockers will help you to get your symptoms improved or resolved, and your labs representative of how you are feeling. Both labs, heart rate and BP, and your hyper symptoms all need to be reported so that your meds can be adjusted. At this period of your newly diagnosed Graves’, frequent communication (and empathic communication, I hope) is very important.

2. There are tons of people on this site who have had RAI. Try using the search box in the upper right hand corner, type in RAI, and you will find them.

3. When there is a new diagnosis of Graves’, with all the typical (and awful and potentially dangerous) symptoms we have,
the healthiest and safe measures to take are to begin on an ATD and a beta blocker (if cardiac issues, fast heart rate, palpitations, etc.) That is step 1. When you feel less hyper, and you are less hyper, there ARE three choices for treatment, as Bobbi briefly mentioned. She told you a lot about RAI, and mentioned the other two which are surgery and continuing on ADT’s. All three treatments are represented by people on this site, and usually we are able to make a personal choice about which way we want to go. In your list of pros and cons, of course the geographic area and availability of experienced and qualified surgeons, and the same for RAI, are considerations. Every choice has pros and cons. I chose surgery, was happy with my choice. Use the search box for the other two options.

It has already been suggested to you that you ask your doctor why he recommends RAI only, and you would like more information about the other two options.
Shirley

[Bobbi]

#1061899

Of the facilitators here currently, Ski and I have done RAI successfully. (Although it took two tries with Ski because of mixup between endo and nuclear med doc over the required dose.) Kimberly and James have been on the ATDs long term and seem happy with their choice.

The key with the meds is that they control the levels of thyroid hormone. If they do that, without side effect issues, fine. But if someone is not well-controlled on the meds, or if there are side effects, then typically RAI is suggested (and sometimes strongly), which may be what’s going on in your case.

Shirley and a couple of others who post here on and off chose surgical removal. You can search through the posts for their comments if you want.

[susan]

#1061900

Hi Superdave.. I am 10 days post RAI and I want to say joining this message board made the difference for me. There are are many supportive contributors that have been in the same place you and I are in right now. That being said, RAI was a no brainer for me, even my internist said she would do RAI. I feel alittle more tired than usual so I take more care. I can get alittle more emotional than usual so I cry. But it is all good because my heart is not trying to jump out of my chest. I am on 160 mg of propranolol and on occasion, on doctor’s advice have taken an extra dose. I am no going to wean myself down to one a day and then off. Hang in there, Dave…come to the message board often- it gave me sanity….. ” title=”Cool” />

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