[heather013079]

in reply to: advice RAI or surgery #1067070

Hi Katy,

I was diagnosed with Graves in early 2008. I took ATDs starting with PTU (had a serious reaction), and then switched to Methimazole which I’d been taking up until 2 weeks ago. I too was struggling with the RAI or surgery decision. I’ve done a lot of research on all treatment options, and agree it’s a very personal decision. For me, timing was important. We want to have another baby sooner vs. later, and so I decided to have surgery. There is a lot of pressure to go with RAI, it seems, as surgery is not as common in the US. My primary care doctor, my endo, and the thyroid surgeon questioned my decision a number of times; however, overall my endo has been extremely supportive and allowed me to make the final decision. I had surgery two weeks ago, and I feel great. The first couple days I had a sore throat and swallowing was hard, but I’m doing really well, and feeling great overall. I am taking calcium supplements, as one of my parathyroids suffered some injury, but I’m hoping it works itself out in the next few weeks. I will have a blood test in January, and if all is well, my endo thinks we should be able to get pregnant early next year.

Best of luck to you as you make this very important decision.

Heather

[heather013079]

in reply to: Remission? Or just sweet spot for dose? #1067549

This IS a very tough call to make. I know because I’m in the same boat. I was diagnosed with Graves disease in late 2007, and started taking PTU because we wanted to have more children. While I didn’t have the white blood cell issue, I did have the other major issue – liver problems / hepatitis – and so PTU is not an option for me. I’ve been on methimazole for almost 2 years, and have been feeling great. I stopped taking the methimazole when I was at 2.5 mg / day, hoping my levels would normalize. No luck – within a few weeks they started to creep up again. I talked to my endo about taking low doses of methimazole while pregnant, and while it is ultimately my decision, she did not recommend. We talked about both RAI and surgery, and ultimately I decided to go ahead with surgery. I will have my thyroid removed in 6 weeks, and hope my levels stabilize soon after.

There is not a lot of information re: methimazole and pregnancy, and what information I was able to find is conflicting. It can be pretty frustrating, but bottom line is most everything indicates there is a chance of birth defects with methimazole, and so to eliminate the risk of birth defect, surgery or RAI is recommended.

Good luck to you…

[heather013079]

in reply to: Debating Upcoming Conference… #1067891

Thanks to all for your comments and support. We’re coming! While my husband is not coming to the conference, he’s going to be there for support, and lounge at the pool with our little girl. I’m scheduled for surgery, but agree, this will be a great way to learn more about Graves & pregnancy, and also to meet people with similar experiences. Thanks again to all – I appreciate it!

[heather013079]

in reply to: confusing? recently diagnosed..anyone?? #1071397

I’ve been taking methimazole just over 1 year. My endo had me at 20 mg / day initially, and I went hypo pretty fast. I’d say within 8-10 weeks. So, we backed it down to 10 mg / day. I was still feeling really tired, and after 3 months or so I reduced my dose to 5 mg / day. Just within the last month I’ve been at 5 mg every other day. I have my next appointment with my endo in September. If my levels are normal, I’m going to stop the medication and monitor closely. I’m really hoping it works out. I’d love to stop taking the ATDs. If I am unable to go into remission, I will probably opt for surgery because we’d like to get pregnant soon.

[heather013079]

in reply to: confusing? recently diagnosed..anyone?? #1071395

I’m new to the board, and in a similar situation. I was diagnosed with GD in January 2008, shortly after having our first baby. I had all the symptoms of GD – heart palputations, dry eyes, weak muscles, weight loss, etc. My endo put me on PTU because we were hoping to get pregnant again within 6-12 months. After 8 weeks on PTU I was diagnosed with drug induced hepatitis (rare side effect of PTU) and had to discontinue immediately. I switched to Methimazole (Tapazol) and my GD has improved (my liver is totally recovered as well). I started at 20 mg Methimazole / day, and am now taking 5 mg every other day. My hope is that I am able to stop taking the medication (soon), achieve remission, and then become pregnant. It’s a lot to hope for, I know. My endo is sensitive to our desire to have more children, and supports my 2nd choice of surgical removal, but I’m really hoping my body will heal itself.

My endo does not recommend becoming pregnant on Methimazole; however, at the point I was taking 5 mg / day, she indicated "it would not be the end of the world" if we became pregnant, as many people have successful pregnancies, with no complications, taking both Methimazole and PTU, but she tends to be more cautious and prefers we wait. So, we’re waiting…

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