[powergrrrl29]

#1073471

Surgery, total or subtotal thyroidectomy is the other medical option

[anitamox]

#1073472

I understand your reluctance of the RAI. I was diagnosed w/ Graves a year ago-but probably living w/ it for several years before. My resting heart rate at my first endo visit was 132. RAI was offered but I was adamntly against it. I have a great endo and she was willing to work with me. After a year of trying EVERYTHING-traditional medicine and homeopathic- my Graves is still uncontrolled. It was explained to me that my thyroid could burn itself out-which is what the RAI does for you-or I could continue like this and have a heart attack. I had the RAI on Thursday.
I am not happy about this option but….I have been "sick" for so long. I am an active person, jogging,surfing, etc. I miss the old me. My endo assures me that it is much easier to regulate a non working thyroid than it is an out of control one.
Do some research-on-line, hang at the bookstore etc-try to keep things in perspective. I know it’s hard, especially when you have the Graves anxiety!

[Ski]

#1073473

If you can’t take the ATDs, the only options you have left are RAI or surgery. Remember that no matter what you think of those two options, remaining hyperthyroid is far more dangerous. Before there were treatments available for GD, fully 50% of patients found it a fatal condition. The odds are FAR FAR better for both RAI and surgery. Surgery is a perfectly valid option if you are averse to RAI ~ this is a very personal, very emotional decision, and it’s better to choose the option you prefer than to have something forced upon you because "everyone else" thinks it’s a better idea. Just make sure you are fully informed about the process and the risks ahead of time, and if you do pursue the surgery, find a doctor who performs many of exactly these surgeries, with very low complication rates. It’s putting your best possible "spin" on the outcome.

RAI sounds scary, I know. Remember that thyroid cancer patients receive RAI in doses up to 10 or 20 TIMES what we receive for Graves’, and that is still considered a therapeutic dose that risks no future complications.

So, those ARE your two options at this point. It’s unfortunate that you were unable to take the ATDs at all, because now it puts you in the position of having to arrive at your final decision rather quickly, and proceed to treatment soon. Try to find all the information you can ~ you may want to consult a surgeon right away, just so you can make the connection and get the information you need.

[msmissy00]

#1019695

I have been diagnosed with Graves Disease several months ago, yet probably have had it for awhile. I was unable to take the anti-thyroid medications. Reacted to both available. I was given the option for RAI and I do not want it. I do have sinus tachycardia ( fast heart rate) that without lopressor runs about 130 and with it runs normal. I have ALL of the classic symptoms. I even have the rash on my shins.. My regular doctor says that sometimes the thyroid will burn itself out. My question is are there any other options???

[msmissy00]

#1073474

Well, I have graves disease and have probably had it for yrs but was diagnosed in oct 08. I decided not to go thru with the RAI. I cant take the ATD , reacted to both. I am taking Beta blockers, and that has decreased my heart rate back to normal. Im feeling great. Wt loss is slow. Hair loss is so-so.. But endo doc keeps saying RAI. Im like why trade 1 problem for the other. I am overweight already. Even though I have lost wt. I am reading and havent heard many good things about becoming Hypo.So for now I am taking the beta blocker and feeling fine.

[Ski]

#1073475

The beta blocker only masks your symptoms, but the onslaught of hyperthyroidism continues within your body. Bone mass is lost, muscle mass is lost, and your entire body is running on "overdrive" if your thyroid hormone levels are elevated. Remember, your heart is a muscle. Losing muscle mass within the heart can be extremely damaging, over time it can prove fatal.

Whatever you think of the options, at least we do have choices. The risk of dying from hyperthyroidism is real.

[LaurelM]

#1073476

The goal of treatment is not to cause hypothyroidism and just leave you in that state. Your thyroid levels will be monitored. If you do go into hypothyroid territory, then replacment thyroid is taken daily to keep you in the normal range. If you have a good doctor, they will also work at getting the ‘right’ normal for you.

I have a friend who due to thyroid cancer in her mid-20’s had to have the surgical removal of her thyroid as well as 2 rounds of RAI (way more potent dose than is giving for Grave’s). She was active and slender before the cancer and she is active and slender now nearly 15 years later. She has absolutely NO thyroid left in her body (as verified by yearly full body scans for 5 years after her treatment). She takes her tiny replacement thyroid pill every AM. She leads a normal life and feels fine. Incidently, her scar from the surgery is barely visible.

After watching her go through her treatment process, she was able to reassure me that both RAI and surgery were OK options. With Grave’s, we usually at least have some treatment choices and they all have the goal of bringing us back to a place of health and wellbeing.

[Maria]

#1073477

Ski I damaged my heart and now am on heart pills. I developed Printz metal angina (spelling) and actually died twice. I am doing so much better now but I still need my heart meds and my nitro for emergency attacks.

[Author]

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