Hello - I am so grateful for this online patient support group/network.
First, here is my question and following this is my story.

My ?: Who out there has/had been planning to conceive when you found out you had hyperthyroidism and how did you or your doctor choose for you to get treated, keeping in mind you wanted to get pregnant sooner than later?

My story:
My husband and I were about to try for our second child, when I decided to go to my PCP to make sure everything was ok and for evaluation of weight loss and swollen eyelids.

I was just diagnosed with hyperthyroidism this past Monday. (High free T4, High free T3, low TSH <0.01) Today, I went to the Endocrinologist for consultation and addn testing. I will get the lab results next week, but most likely I have Grave's Disease.

I have been reading about the 3 options: anti-thyroid meds, radioactive iodine, and thyroidectomy. At first I thought I would want the surgery just to get my problem solved quickly and start working on getting pregnant. Then, I spoke to my sister-in-law who is a endocrinologist in residency. She said forget anti-thyroid meds because it will take too long. She said RAI (radioactive iodine) might be best because most likely I'll only need one treatment. She said surgery wouldn't be an inappropriate option if I wanted to go that route either, since I would have to wait ~6 mos to conceive with the RAI.

So, it kind of threw me for a loop when the Endocrinologist said she would recommend me taking anti-thyroid meds, instead of RAI or surgery. That would be her first choice for me in either situation of wanting to get pregnant soon or not. She said I may become euthyroid in as little as 2 months and then after my thyroid levels normalize, I can start working on conceiving. I could take PTU/methimazole during my pregnancy with a very very small risk of fetal harm. If I do have Grave's, my thryoid antibodies could also cause harm to the fetus. Either way, the benefits of getting treatment for hyperthyroidism for myself or my future fetus far outways any potential risks from the treatment. What she said made complete sense to me. I would have to be on anti-thyroid meds anyways before considering RAI or surgery to get me prepared for either.

So, my main question here is who out there has also been in my situation of attempting to conceive while just getting diagnosed with hyperthyroidism and how did you or your doctor choose for you to get treated?

Many thanks out there!! Thank you in advance!!!!
I did seach some of the posts for similar topics but I also wanted to throw out my question there, too.
mk

Hi, Mickiko, and welcome to our board.

As you have found out, not all doctors agree on treatment options. It can make our lives very interesting. Another thing that makes things interesting is that we can mis-interpret what we hear when we are hyperthyroid and ill, or only remember parts of it. So, it can be confusing. Be sure to ask follow-up questions, if they occur to you, and don't be surprised if you got comments a bit twisted. Our concentration goes a bit wonky while we are hyperthyroid.

And not all of us agree on treatment options, either. What one patient did, or did not do, may not help you to figure out what YOU feel most comfortable doing. Some of us are not at all comfortable even with the small risk the antithyroid drugs (ATDs) pose to the developing baby. To figure out how you feel about this, you might talk with your pediatrician and/or with a pharmacist. Some of us wouldn't touch RAI with a ten foot pole – and I felt the same way about surgery, irrational though that feeling was. But all of our treatment options are generally safer than remaining hyperthyroid, and the only bad choice you can make would be one that your doctor warned you specifically against for known medical reasons.

One thing is certain, though. Before you get pregnant, you need to get well again, by whatever treatment option you finally decide on. Optimally, you need to be healthy when you get pregnant. And that will take a bit of time. We DO get well again. Our treatment options do work to give us back our health. But our bodies typically need a few months at controlled normal levels of thyroid in order to heal from the stresses and damage caused by being hyperthyroid.

Wishing you good health soon,

Hi! I was diagnosed with Graves after my 4th baby. We probably aren't going to have any more children. I did want to encourage you though to try the ATD's. I have a friend who has had Graves for 10 years and has had 4 children through out and breastfed them all. She has taken both PTU & methimazole at different times through out.

I ended up choosing surgery because methimazole caused me liver issues (this is very rare- 1% chance, so don't worry too much about that- just get your liver enzymes checked along with your thyroid levels). Methimazole (5 mg) did get me euthyroid in 7 weeks though! It did a great job there; so, it's an effective medicine no doubt! It did allow me to be euthyroid for my surgery, so for that I'm grateful!

It's very possible you'll be ready to conceive sooner than later on ATD's- so I would give them a chance and then go from there.

Alexis

Hello Mickiko,

Welcome to the forum. I'm glad you found us

I'm currently on Methimazole. I too was trying to conceive when I was diagnosed. Well, I was really taking a small break. I had been taking treatment Rx to conceive for 5 months when I started to feel physically and mentally tired. Before that I was feeling well and my labs showed it. In Dec. we decided to stop for a while to give us a break. I didn't know why I was tired but attributed to the stress from trying to conceive and other things that were going on. In Feb., at my OB/GYNs I asked for labs, which came back normal, including my TSH. I continued to feel tired and in late May/early June, I developed tachycardia. A few days later I was at the ER after almost passing out. We all thought I was pregnant but the multiple pregnancy tests said otherwise. My TSH on the other hand was almost not there and my fT3 and fT4 were very high.

After reading and researching about GD some times I wonder if the hormones taken to aid conception only pushed me over the edge into GD. You can imagine that at first I was very frustrated and sad.

As for now, we have decided to get my health back in order before continuing with our plans to become parents. I'm scared to death to become pregnant right now b/c I have read that the Methimazole can affect the fetus. My main goal, therefore, is to get back to good health and stay like that for a while and then try become parents again. I don't want to have two things going on at once you see and I would hate to get a brand new life involved in my health issues. My husband agrees and so as for now, I'm hoping that the Methimazole works but if it doesn't, then I'll have to decide b/w surgery or RAI. I lean towards surgery b/c the radiation scares me. Time will tell as to where I'll go. I'm content with my choice though.

I know it can be very frustrating having to halt plans about a new baby but if this disease was put in our paths before becoming parents, then we'll just have to learn to deal with it before we get to parenthood. Maybe it will make us better people. Maybe we'll learn something about our body that is better to be known before a new baby arrives so that when a new baby arrives we can give him/her our best. I believe that blessings come in different manners and that maybe at first we don't see it that way but later on we come to realize their true meaning.

I wish you the very best with your decision making. Please keep us posted. We're here to be a support system and answer questions if we can.

Caro

Thank you Bobbi, Alexis, and Caro!
I really appreciate your responses.

Bobbi -
I really like your suggestion about talking to the Pediatrician about the harmful effects of ATDs during gestation. Thank you.

In some way, hearing 3 different endocrinologist giving 3 different answers made me feel better rather than more confused. It means, that there is no one right answer and that anyone of these treatment options are very reasonable to choose. Also, I learned from the differing opinions because that way, I got to hear all the pros/cons about each option. I just want to be as educated as possible so that I can make the right decision for me. Hearing other people's stories, from a world I do not know at all, is very reassuring to me. So, thank you so much for your support within this foundation! It is so calming, especially, for someone so newly diagnosed.


Alexis -
You telling me about your friend who had Graves' who then had 4 healthy kids she breastfed while on ATDs, was reassuring to me. Although, I do realize that if something happened to my future child, the statistics wouldn't matter, because for me, it's 100%. Also, hearing that you got euthyroid on Methimazole (MMI) in just 7 weeks was also comforting. It validates what my Endo told me, that it COULD be possible.

I am going to keep taking the ATDs for now. I'm very curious to see how I'm responding to them when I get my followup lab tests in just a couple weeks. I'm also going to educate myself a little more about what the exact statistics are to fetal harm from the ATDs. Thank you, Alexis!

Caro - Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It's a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi's suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don't want to wait to long is because I already have a 2 year old at home. I don't want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don't have a great relationship with him. He sees me more like a 3rd parent rather than a sister.

Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.

I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.

Just as an FYI…my doctor and I had a thorough discussion on whether to start with MMI or PTU. I know it is standard practice to start on MMI, unless you are in the first trimester you go on PTU. But she put me on PTU because there is a chance I may start trying to get pregnant soon when/if I become euthyroid. She had a patient that started on MMI and then switched to PTU when she was planning to conceive, but she wasn't responding to PTU……so, she told me she just wished she knew that upfront.

Thank you all! I am learning so much! I am feeling more confident about my situation. I will keep you guys posted and I am looking forward to following your posts/threads, as well!

mk

Thank you Bobbi, Alexis, and Caro!
I really appreciate your responses.

Bobbi -
I really like your suggestion about talking to the Pediatrician about the harmful effects of ATDs during gestation. Thank you.

In some way, hearing 3 different endocrinologist giving 3 different answers made me feel better rather than more confused. It means, that there is no one right answer and that anyone of these treatment options are very reasonable to choose. Also, I learned from the differing opinions because that way, I got to hear all the pros/cons about each option. I just want to be as educated as possible so that I can make the right decision for me. Hearing other people's stories, from a world I do not know at all, is very reassuring to me. So, thank you so much for your support within this foundation! It is so calming, especially, for someone so newly diagnosed.


Alexis -
You telling me about your friend who had Graves' who then had 4 healthy kids she breastfed while on ATDs, was reassuring to me. Although, I do realize that if something happened to my future child, the statistics wouldn't matter, because for me, it's 100%. Also, hearing that you got euthyroid on Methimazole (MMI) in just 7 weeks was also comforting. It validates what my Endo told me, that it COULD be possible.

I am going to keep taking the ATDs for now. I'm very curious to see how I'm responding to them when I get my followup lab tests in just a couple weeks. I'm also going to educate myself a little more about what the exact statistics are to fetal harm from the ATDs. Thank you, Alexis!

Caro - Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It's a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi's suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don't want to wait to long is because I already have a 2 year old at home. I don't want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don't have a great relationship with him. He sees me more like a 3rd parent rather than a sister.

Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.

I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.

Just as an FYI…my doctor and I had a thorough discussion on whether to start with MMI or PTU. I know it is standard practice to start on MMI, unless you are in the first trimester you go on PTU. But she put me on PTU because there is a chance I may start trying to get pregnant soon when/if I become euthyroid. She had a patient that started on MMI and then switched to PTU when she was planning to conceive, but she wasn't responding to PTU……so, she told me she just wished she knew that upfront.

Thank you all! I am learning so much! I am feeling more confident about my situation. I will keep you guys posted and I am looking forward to following your posts/threads, as well!

mk

mickiko
Caro - Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It's a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi's suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don't want to wait to long is because I already have a 2 year old at home. I don't want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don't have a great relationship with him. He sees me more like a 3rd parent rather than a sister.

Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.

I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.

Hello MK,

Talking to a Pediatrician sounds like a great idea. Please let me know what you find out. I understand about not wanting a big gap b/w your children. It is fun having a sibling that is close in age. To answer your question, I don't know if I'm euthyroid. I'm hoping I'm or that I'm getting close to it. Last time my Endo did labs was about 3 wks ago and back then I was not. My next set of labs is next week so we'll find out then. I've been on Methimazole for 6 weeks now and I'm on 30mg/day (kind of high). I'm so glad you have found us.

Caro