[cathycnm]

#1066592

Rhopp – My strong suggestion is a consult now with a perinatologist. Your university center should have one you can see. They are the experts in risks like this during pregnancy. They would not manage your care at this point – so it sounds like you need to find someone you are comfortable with to do that piece – but I do encourage you involve a perinatologist in the team if the treatment plan concerns pregnancy because, in my experience, they have the most knowledge in this area.

[Ski]

#1066593

People here have absolutely managed their Graves’ Disease with PTU during pregnancy, and they have had healthy babies. There is an increased level of monitoring necessary (you need to make sure your thyroid hormone levels are at optimum levels in order to have the best outcome), but it can be done. There is a dose threshold beyond which PTU can be dangerous. I’m not sure where that threshold is, it wasn’t part of my GD experience. There has recently been concern about PTU because it has led to liver failure in children who have used it to treat their Graves’ Disease, so it is not recommend for use in ill children, and is discouraged for adults, but it is safer than methimazole for pregnant and nursing mothers, so it continues to be used, mostly in that extremely limited context. You DO need to speak with physicians who will support your treatment choice, and at least provide balanced information on the pros and cons of your choices.

The fact that your hair is falling out is not a matter of concern ~ well, I’m sure it concerns YOU, but it isn’t a dangerous side effect or one that should continue for long. It is NOT due to the PTU itself, it is due to the fact that your thyroid hormone levels are changing rapidly. Since that does not occur naturally, your body interprets such a change as a life-threatening event, and as such it removes resources from the parts of your body it considers "extraneous," such as hair and nails, in order to preserve your resources for dealing with this emergency situation. Once your levels have reached a normal point AND STAYED THERE for some period of time, the hair loss should abate.

I hope this helps! I know you’ll be successful in your treatment. You appear to have a good handle on what’s going on. Make sure you have the best possible medical team, and then you can move forward with confidence.

[rhopp]

#1018704

Good morning. I am 31 years old and was diagnosed Graves last fall 15 months post partum. Most likely my previous pregnancy is what triggered my Graves but it does run in my family. I went to the one Endo clinic that is in our area and met with a doctor. This clinic is through the University and I was assigned a fellow doctor, who visits with me then presents to the Staff physician. My first appointment we covered all of my concerns. I was a nursing Mom and wanted to contine to do so. I was put on PTU and reassured that it was safe. My other concern was that we have planned a future pregnancy this coming fall. The Staff doctor talked to me about both of these concerns and reassured me that future pregnancy while taking PTU would be fine with close monitoring. I left the office feeling pretty good about taking the medication. I recently just went for a follow up appointment and expressed some concerns I had about the side effects of the PTU (my hair is falling out it clumps). My Fellow doctor wanted to switch me to Methamazole (sp) but I told him I am still nursing and planning on future pregnancy. He didn’t seem concerned about the hair loss. Then the Staff physician came in (different doctor than previous visit) and he lectured me telling me that absolutely not was I to plan a pregnancy while taking PTU. That it is highly risky and unsafe for the baby. I was completely shocked by this. Now I am very confused as to what is safe? We have always wanted our children to be close in age. The RAI is very scary to me and I am not ready to give up on remission from drug therapy. I desperately want to find a new doctor. I feel like I am not being listened to and the doctors are contradicting themselves. I have worked with an Internist before. Does anyone see an Internal Medicine doctor for treatment versus seeing an Endocrinologist. And has anyone planned pregnancy on PTU and had a healthy pregnancy without complications? Thank you.

Rhyan

[Tamara2010]

#1066594

Hi Rhopp,

Don’t worry. I had found out I had graves in 2007. I had my baby June 2009. I was put on PTU which is the safest while you are pregnant. First of all, it is your life and your body and your decision. Find a different doctor, if they don’t listen or respect what you want. I changed and found a women endo and she seemed to understand me as a women. Anyway, I was put on PTU and had a breakout so I got on Tapazole. I had my tubes cleared and got pregnant while on meds. I took them for 1 month and my pregnancy made me go into remission until 6 month postpartum. Pregnancy usually makes most people go into remission. If you want to plan pregnancy do it. Stay on your pills and get regular bloodwork while you are pregnant and have them watch you. My endo did not make a big deal and he can be hard on me. I am sitting next to my beautiful baby girl, a miracle, and I waited 38 yrs for her. Graves did not stop me. God bless you and let us know how you are doing. Tamara

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