[Kimberly]

#1062357

Hello – Hopefully, you will get some good responses, as we have members on this board who have had healthy babies after all three treatment options: RAI, surgery, and Anti-Thyroid Drugs.

As you have already researched, you want to make sure your thyroid hormone levels are stable before trying to conceive, as being hypER or hypO during pregnancy can be dangerous for you and for the baby. Keep in mind that you *may* require several dosage adjustments after surgery — and you have to wait several weeks between dosage adjustments to allow the replacement hormone time to build up in your body.

For many patients, this does end up being less time than the 6 months required after RAI…but it *is* something to consider when weighing all three treatment options.

[Julicoots]

#1062358

Thanks so much Kimberly! I’m hoping to get some responses and share some experiences as well!

Like I said, when I was first DXed I couldn’t seem to find any info and what I did find were just statistics and Dr. opinion. Now with the help of your board and a few like it, we have access tp people who are traveling down the same old bumpy road to share stories with!

[Julicoots]

#1018038

First of all, I am so glad to see there’s so many support pages and boards out there now! I feel like when I was first DXed there was nothing out there and now here you are….of course, maybe I just wasn’t looking in the right places!

Hi there! Long story short, just came out of a 2-year blissful remission. We were going through fertility testing and…oh lookie there…my TSH level was <0.01 again. So back to the endo and starting the treatment all over again. Naturally, we had to put the quest for a baby on hold until my thyroid levels "level off" so they put me on PTU (hate it) because it’s safe for conception and baby. Well I’ve already had it. On top of being told that GD goes away during pregnancy only to come back worse post partum, the PTU is awful and I’ve only been on it a month and it’s already needing tweaking and adjustments.

At this point I just want the surgery. RAI is not an option because I wish to get pregnant soon…also I’ve heard some scary stories about some unlucky folks having trouble concieving BECAUSE of the RAI. No thanks… I sick and tired of feeling cloudy-headed, clumsy, staring into space, having no engery and having to "pep talk" myself into simple everyday tasks. This is not me. Also the idea of finally getting pregnant only to feel worse than I have in the past couple months is just not acceptable. I am wondering if anyone has had the surgery and then concieved, or if anyone with GD has concieved with just your standard PTU treatment?

I welcome any info or comments, and if you’d like to just vent about how you feel about PTU, feel free. ” title=”Very Happy” />

Thanks!

[mamabear]

#1062359

I just happen to look in today and see this. I have been dealing with kid issues and my own health issues but not related to GD.

I just posted to smj78 about waiting and leveling off after her RAI before delving into trying to get pregnant. I will say the same in this case. Make sure that your TSH is within range before you try to conceive. It’s very good that the fertility dr. checked your levels. Shows they know what they are doing! Kudos to them, that is a point for them!

I have been on PTU ONLY and was able with the help of a Reproductive Endocrinologist (RE or fertility dr. some call her) get pregnant. I was about 3-4months pregnant before they took me off of the PTU because my levels were going a bit to high and the fear of miscarrage was possible.
I had baby and was fine afterward. Baby was about 5months old and I started treatment again for baby #3(1st was several years prior to). Baby was 10months old when I got pregnant again with #3. I was not on any PTU at all.
Baby a healthy baby girl and still no PTU.
When the baby was 4 months old and #2 was 22 months old the 22month old and I wound up gettin Rota virus. It was horrible, throwing up and diarrhea I wouldn’t wish on anyone! That viral infection caused me to yet again go to dr. and my tsh was 0.001 about 4-6 weeks after the illness. It was bad, everything was off not just the TSH which was the only thing that had ever been off.
Dealing with that and 3 kids was deffinately challenging but it had to be done.
Again I took to the PTU well and within a short time was back on track and off the ptu rather fast. Then wound up prengnat on my own and still didn’t need to go back on the PTU.
#4 was healthy and again didn’t need to go on PTU again.

I had a bit of a virus and shortly after that my level showed just outside of normal range but a different endo didn’t do a thing about it even though I knew I felt bad. I dealt with it and went on ptu anyway for a short course. I was fine and again went off meds and have been fine since June 2007. I have had a few virus’ as well and still has not kicked me out of remission.

The moral to this story is, everyone is different. Just because you go on PTU doesn’t mean you will need it during pregnancy, it doesn’t mean you will be off of it either. It doesn’t mean you will or wont be worse afterward. Every woman/man is different.
You might be fine with baby but get a cold and be kicked out. The key here is to know YOUR symptoms and know YOUR body and know when you are OFF and know that you are NOT superwoman and when you are off you need to go to the dr. to check and so what if yuo have to go back on PTU. You do it and sort it out again.

I have come to find that if I need to go back on it I just deal with it. It’s no biggie for me anymore because I will not let it run my life. I am either healthy or not, when I’m not I take care of it.

I know that is hard to hear because right now you don’t think it is that simple. I have to feel this way because I have too many kids to feel that scary feeling that i might go out of remission so this is how I work through… Just do it and kick Graves’ disease’s butt!!!!

keep us posted! I’d be happy to answer any questions. Oh and my kids are very healthy, although quite whiny!

[ely2009]

#1062360

Here’s my (brief) pregnancy story. I was weaning off of methimazole to "try" for remission when I discovered I was pregnant. I went off immediately and felt great during pregnancy – well, as far as GD anyway. My endo warned that post-partum would be a very likely time for symptoms to come back. Sure enough, 2 weeks after my baby was born (Feb 14, 2011) I began to feel hyper again. I waited 2 more weeks before having blood drawn and my TSH levels are dropping. I had a talk with my endo and my pediatrician about my options (I am breastfeeding and ideally would like to continue – as I did for my two older kids – for a year). Most likely I will go on PTU 50mg/2 times a day. I’m having another round of bloodwork drawn tomorrow before a final decision is made because my endo wants to see if it will stay at this level (I don’t feel horrible, but definitely feel hyper) or if it will continue to drop. I’m hoping the PTU will work as well for me as the methimazole did. Why don’t you like it? I HATE meds in general, but I really hate feeling hyper too.

On a side note, I do have 3 children, but we had difficulty conceiving all of them – even went through fertility testing as well. I now believe that my thyroid played a major part in that. My TSH can be in the "normal" level but I still feel symptoms. My newborn was definitely a surprise – a WONDERFUL surprise. ” title=”Smile” /> But she came about after my TSH was consistently at MY sweet spot.

And the way you describe your symptoms – I agree…it’s just NOT ME when I am hyper.

Good luck.

Emily

[Julicoots]

#1062361

Wow! Thanks so much for your stories!! They do make me feel a lot better. It would seem that as long as the TSH is "normal" regardless of the type of meds you’re on (or not on) you have a good sporting chance at a little one. That really makes me feel better! AGAIN, thanks so much ” title=”Very Happy” />

As far as PTU – get yourself a easy swallow spray or some cough drops as they will leave a horrible sour taste in your throat for at least an hour after taking them (of course I am on 2 tablets 2x daily) and they’ve given me indigestion and heartburn something wicked and I find since I’ve been on them I’ve been super exhausted, just drained and have some eye burning and pain…but then those symptoms may be from the GD itself and not the drugs, course I didn’t feel this way untreated. Hopefully you’ll have better luck. Let the doc know if you get a rash, it’s pretty common I’m told.

[Author]

Posts