38 yr. old diagnosed April 2012 with Graves
no family history and the only symptoms is a rapid heart rate, no weight loss, insomnia or muscle weakness. The uptake and blood results concur with the diagnosis.
The scan showed my thyroid is small and that there are no growths.

Dr. #1 said I should do RAI
Dr #2 said surgery because with RAI I could still have high level due to the fact that the pituitary could still think the gland is viable and I could still have problems such as heart rate and eyes. He also said that the PTU would drag the problem out and eventually would lead to RAI or surgery anyway. He also said I could have kidney failure down the road from PTU.
Dr. #3 said PTU should be my only option because I could go into remission, then go from there if I don't.

Do I dare go to a Dr#4?

Any advice?

Hi, and welcome to our board.

Aren't second – and third – opinons wonderful! But I do hope while all this is going on that you are taking a med in order to protect your body from too much thyroid hormone. Many of us start out with either PTU or methimazole even if we are debating whether or not to do another treatment option. These medications act as a chemical block to the production of thyroid hormone and can often work to bring out hormone levels back to normal. Yes, they do have side effect issues, and can sometimes cause liver problems, but they are safer typically than remaining hyperthyroid.

Just some basics: with Graves the hyperthyroidism is caused by antibodies which stimulate thyroid cells to ignore the normal restraining commands of the pituitary gland, and to over produce thyroid hormone. The pituitary puts out a hormone called TSH (thyroid stimulating hormone). When there is too much thyroid hormone, our TSH levels go down so low as to be unmeasurable. Later, once we have our thyroid levels under control (by whatever means) the TSH levels will rise again, and the doctors use this as a way of determining whether or not they have managed to get our hormone levels back to a proper zone.

ALL of our treatment options deal with hyperthyroidism, not with antibody levels.
Medical science does not know how to target specific antibodies.

Remission, for us, is defined as being able to go off all meds for a year or longer, while maintaining normal levels of hormone.

I think, perhaps, you may have misunderstood Dr. 2. I haven't heard of kidney failure due to the PTU. PTU is known, however, to cause, in some patients, liver problems. It is also known, as well, that treating our thyroid problem does not necessarily eliminate the problems that might later develop with our eyes. Some studies have suggested that surgery does not lead to an immediate increase in eye symptoms, so if our eyes are already showing signs of TED, surgery is considered a better option than RAI for removing our thyroids. But people do have their thyroids surgically removed, and develop TED later anyway. And by that I do not mean that RAI causes eye problems, either. But the studies used to suggest surgery when TED already exists have shown that in a minority of patients eye symptoms can temporarily get worse after RAI. The thought is that it stimulates an immune system response, and ANYTHING that stimulates the immune system can increase our disease symptoms temporarily.

It is not at all uncommon for us to misconstrue things our doctors say, btw. Especially while we are so ill due to being hyperthyroid, it can be helpful to take a family member or friend to the consultation….someone who is not ill and someone who can listen, take notes for us. It helps to eliminate confusion that is altogether too common when we are ill.

Hello and welcome! I would encourage you to check out the “Treatment Options” thread in the announcements section of this forum, as all three options have risks and benefits.

Also, a quick note that PTU is generally *not* used as a front-line treatment for Graves' disease, as the other drug (Tapazole or generic methimazole) has a better safety record with regard to liver issues. There are certain cases where PTU may be used, for example for a woman in the first trimester of pregnancy (because Tapazole/methimazole can increase the risk of a couple of specific birth defects) or for a patient who wishes to pursue Anti-Thyroid Drugs, but has a mild reaction to Tapazole/methimazole.

Take care - and keep us posted on how you are doing!

Hi everyone,
I has been a while, but dealing with Graves has been difficult for me. Here is my update:
37yo Female
Diag in March 2012
TSH 0.01
T4 2.3 (0.8-1.8)
T3 267 (76-181)

Start Methamazole for 6 weeks, sever headaches and abdominal symptoms

June:
TSH 0.01
T4 1.9 (0.8-1.8)
T3 224 (76-181)

Continued on a lower dose of Methmazole

July:
TSH 0.02
t4 1.5 (0.8-1.8)
T3 138 (76-181)

Continued to have side effects, lowered dose even more

September:
TSH 0.01
T4 and T3 back out of range and heart palpitationshave become more pronounced and a pulse of 126.
Frustrated. Endo wants to go PTU/RAI route. I have a fabulous surgeon who operated on my dad that is a Head/neck specialist at USC. I have consented to surgery in Novemeber, not sure what to tell the Endo. I want the extremes to end, the heart palpitations to go away. I am fearful of TED and the wear and tear on my body and heart. I know the immune part won't go away, but some type of control will be nice.

Hoping I have made the right choice, I have a month to cancel.
Any feedback would be nice. Relative say I am jumping to surgery too quickly, but I read that it seems normal.
Help… advice, feedback…

Hello - All three treatment options have risks and benefits. There are quite a few regular posters who have chosen surgery as their treatment option. You can use the search function to search for “surgery”, “thyroidectomy”, etc. to read about their experiences. The American Association of Endocrine Surgeons also has a great patient education site at http://www.endocrinediseases.org/ [endocrinediseases.org]

(Note on links: if you click directly on the above link, you will need to use your browser's “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

I know this is a difficult choice – we've all been there! All we can do is research from credible sources, consult with our docs and understand the reasoning behind their recommendations, and then make the final choice that we think is right for us. Wishing you all the best!

Today is the day! I have my total thyroidectomy in a few hours. Hoping this leads to feeling better soon. Being hyper and on meds. that are not working is taxing.
I'll post soon with results.
Thanks for all of your support. It is so helpful reading other posts and knowing that I am not the only one going through this.

Thanks for the update - hope that all goes well! Please check back and let us know how you are doing!

Home from my TT. The first night I spent the the hospital where they monitored everything especially my calcium levels. Good news they saved all of my parathyroids and vocal nerves. The surgeon said everything went well.

Started 100mcg of Synthroid yesterday (2nd day after)continuing with beta blockers, antibiotics to prevent infection and pain meds. Spent the entire day vomiting. A lovely homecoming. Today I feel better, but weak. Going to the endo today.
Pain is gone, I just feel a bit bruised and stiff.

I'll post more when I have details.

Ugh…sorry for the unwelcome post-op effects, but so glad to hear that the surgery itself went well. Hopefully, you will feel better and better by the day. Take care - and keep us posted!