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Old Mar 4th, 2008, 06:55 PM   #1
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Default Thyroid and TTC, sad news.

I've been diagnosed this week with Grave's disease, a form of hyperthyroid.

I've been trying to get pregnant for more than a year, and my endrocrinologue finally found why I couldn't.

I've been relieved to know why...but the problem is not over.

Apparently, the medication you take to treat Grave's disease are not compatible with being pregnant...

So what's my choice?
Not treat my disease and NOT having children
Treat it, and NOT having children...

I'm so sad... and don't know what to do now
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Old Mar 4th, 2008, 08:22 PM   #2
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Default Re: Thyroid and TTC, sad news.

I am so sorry to hear about your news. I am not sure if you have considered adoption but there are a lot of children out there needing a loving family. Hang in there.
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Old Mar 4th, 2008, 08:29 PM   #3
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Default Re: Thyroid and TTC, sad news.

Perhaps not the most convenient/cost-effective solution --but since the problem is neither your eggs nor your husband's sperm, would you consider having a surrogate carry your pregnancy?
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Old Mar 4th, 2008, 08:39 PM   #4
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Default Re: Thyroid and TTC, sad news.

I'm so sorry...It must be so heartbreaking. You have some big decisions ahead of you.. Would you consider the others suggestions?
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Old Mar 4th, 2008, 11:44 PM   #5
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Default Re: Thyroid and TTC, sad news.

[quote=champagne clara;5524009
Apparently, the medication you take to treat Grave's disease are not compatible with being pregnant...
[/quote]

Is this the only reason they're telling you not to get pregnant? Sounds weird. I'm presuming your endocrinologist told you this, not your OB/Gyn... Propiothiouracil (PTU) and Methimazole have both been used during in pregnancy. Go see your OB/Gyn. Good luck!
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Old Mar 5th, 2008, 05:28 AM   #6
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Default Re: Thyroid and TTC, sad news.

I am so sorry for this, heartbreaking. I´m getting tested for the same thing, I will know the results soon. Get a second opinion on the relation of pregnancy.
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Old Mar 5th, 2008, 09:04 AM   #7
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Default Re: Thyroid and TTC, sad news.

I am so sorry to hear this. I agree with Nola. Get a second opinion, what would that hurt.
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Old Mar 5th, 2008, 09:06 AM   #8
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Default Re: Thyroid and TTC, sad news.

Something as big as that, definately get a second opinion. Good luck to you!
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Old Mar 5th, 2008, 09:49 AM   #9
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Default Re: Thyroid and TTC, sad news.

champagne clara,

Having Graves' Disease does NOT mean you can't be pregnant. I have Graves', too, although in my case it has never been the reason for my infertility problems (I also have severe endometriosis that prevents my eggs from getting where they need to go. Ovulation has never been the problem for me, which is usually the problem with Graves'.)

I'll try to give you a short version of my story, which is unfortunately still pretty long. When I was diagnosed with Graves', I went on medication and my endocrinologist told me absolutely not to get pregnant until the disease was stabilized for at least a year and preferably two! I followed this advice, not knowing I would then be unable to get pregnant for other reasons. At any rate, I took the medicine for about 2 years, then was off it with normal thyroid levels for about 2 years, and then started dealing with all the infertility stuff. I finally had my daughter through IVF, and my hyperthyroidism came back a few months after she was born and I went back on PTU (propylthiouracil). The thyroid got better, I came off meds, and then got pregnant with a frozen embryo but miscarried. The miscarriage likely had absolutely nothing to do with my thyroid levels, which were completely normal at the time.

Then this past December, getting ready to start another IVF cycle, my thyroid levels started creeping up again and I went back on PTU. We proceeded with the cycle after a lot of discussion, since the levels weren't too bad and I wasn't really symptomatic, and I am now in the very early stages of another IVF pregnancy, this time on PTU.

I have read tons about this and seen two endocrinologists and a high-risk OB _before_ getting pregnant to decide the safest course of action. From what I have read, there are a few big issues during pregnancy with this disease. 1 - You do not want to be hyper or hypo thyroid during pregnancy, because of the risk to the baby. Uncontrolled hyper or hypothyroidism during pregnancy is a bad, bad thing. So you want the disease to be as stable as possible when you get pregnant. 2 - PTU (and Tapazole) do cross to the baby, so the goal is to be on the lowest dose of medicine possible that keeps your levels on the high (hyper) end of the normal range. From everything I have read, the issues with the baby are very dose-related, so the lower the dose the better. 3 - Thyroid levels fluctuate throughout pregnancy, and your body often really starts chewing up thyroid hormone during the first trimester, so your dose may need to be decreased and you may be able to come off the medicine altogether, although you will probably have to go back on again or up on the dose after delivery. In my current situation, we have been able to back off quite a bit on my dose and I am hopeful I will be able to stop it altogether in a couple of weeks. 4 - You will need to be monitored closely during pregnancy, both in terms of lab levels and how the baby is doing. In my case, I am seeing both my endocrinologist and a high-risk OB. 5 - and this may or may not be an issue for you, but you can breastfeed on PTU.

That may all sound a little scary, but the point is that you still can have a pregnancy with hyperthyroidism, you just have to be very careful with it. Also remember that a lot of women first get diagnosed with hyperthyroidism _during_ pregnancy - think how much riskier that is, since they don't have the chance to get things under control before getting pregnant. At least you're in a situation where you can address it before the pregancy starts.

Another option is to do radioactive iodine, which makes you hypOthyroid so you have to take thyroid replacement hormone (but not PTU or Tapazole). The advantage there is that thyroid hormone does _not_ cross to the baby, so there are fewer worries during pregnancy. The disadvantage is that most recommend that you wait at least six months, and probably at least a year, after having radioactive iodine because of any effects that may have on the fetus, and it can take a while to get your thyroid levels regulated as well. We never really considered that option, because with my other problems I was not willing to wait a year. But depending on your age and your situation, it might be something to think about.

Sorry for the long post. This post is definitely not meant to be medical advice, but I would just urge you to talk to other doctors before accepting someone telling you that you can't get pregnant with this disease. I dealt with a conservative doctor telling me similar things at first (although not that I could _never_ get pregnant, just that I should wait a long time), but I have done a lot of research and read probably 50 journal articles about this and about the management of the disease, and worked with my doctors on it, and it can be done safely. In comparison to other diseases that you could have while pregnant, it is definitely not the worst. I would just make sure you work with doctors who are familiar with treating hyperthyroidism during pregnancy. If you have someone who hasn't done much of that, keep looking, because this is common enough that there are people out there who know how to deal with it.

Please post back to this thread or PM me if you want any more information. I would be happy to talk about this with you.

Good luck to you!
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Old Mar 5th, 2008, 10:14 AM   #10
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Default Re: Thyroid and TTC, sad news.

I am so sorry to hear of your diagnosis. I am so relieved you brought this up. I have a very similiar auto-immune disease called Hashimoto's Thyroiditis and have suspected it is playing a role in our infertility.

The good news is I know many people with thyroid conditions that do have happy healthy babies! Also, auto-immune diseases tend to be dormant when pregnant because the pregnancy suppresses the immune system (which is why pregnant women are more susceptible to getting the flu/colds).

I am headed to a reproductive endocronoligist on Monday. I will share any news I learn here. If any one else has additional info, please share!

Thanks for starting this thread champagneclara!!
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Old Mar 5th, 2008, 02:39 PM   #11
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Default Re: Thyroid and TTC, sad news.

My cousin's wife has thyroid problems too. But she had a baby boy last year, I think her Dr change some of her medication.

Best of luck!
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Old Mar 5th, 2008, 07:25 PM   #12
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Default Re: Thyroid and TTC, sad news.

Sarah, Thank you, Thank you for your post.
Thank you all for your support.

It's all so new for me, as I've just been diagnosed this week after more of two years of symptoms...

I will defintely get a second opinion when I will be back in France in June. Sometimes, medical opinions can be very different in the two countries.

My levels - T3 T4 TSH -are very very off the charts. TSI also
And I'm having a biopsy next week to test for cancerous tissues...

So we'll see...

I'm already 38, and I guess every month takes me further from having my own baby. I am open to different options , adoption in particular. BUt the discussions with my husband are not easy on that subject...
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Old Mar 5th, 2008, 08:43 PM   #13
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Default Re: Thyroid and TTC, sad news.

Quote:
Originally Posted by champagne clara View Post
Sarah, Thank you, Thank you for your post.
Thank you all for your support.

It's all so new for me, as I've just been diagnosed this week after more of two years of symptoms...

I will defintely get a second opinion when I will be back in France in June. Sometimes, medical opinions can be very different in the two countries.

My levels - T3 T4 TSH -are very very off the charts. TSI also
And I'm having a biopsy next week to test for cancerous tissues...

So we'll see...

I'm already 38, and I guess every month takes me further from having my own baby. I am open to different options , adoption in particular. BUt the discussions with my husband are not easy on that subject...
I really feel for you. I think the first step is getting treatment started so you feel better, and then decide about pregnancy. I definitely understand the feeling of urgency about time, but you still have options open to you. You may find that after you are treated, conceiving happens relatively easily. I don't think you should feel that that door is closed to you forever because of this.

Adoption is also a wonderful thing. We are involved in that process ourselves, and my husband was also initally resistant to it, but I was able to get him to open his mind to it after a lot of discussion, attending some seminars, etc., and now he is as excited about it as I am (the only bad thing is we are adopting from China, and soon after we completed our paperwork, the wait there became very long and is getting longer! So we are settled in for a very long wait!) But adoption is a difficult, very personal decision to come to that you both have to be on board for, and I think it's hard to make a decision like that when you are not feeling well (and Graves' can definitely affect your emotions, too). You've got to get yourself feeling better and healthy again. My thoughts are with you, and I wish you the best of luck with this. I hope you are feeling better soon!
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Old Mar 8th, 2008, 02:05 PM   #14
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Default Re: Thyroid and TTC, sad news.

I'm so sorry to hear the news sara and clara. My SIL was diagnosed with a thyroid condition and just gave birth to a healthy baby boy (IVF), so there is hope. I'm a bit concerned now too. I've been taking my waking temp for 2 months now and it is extremely low. My temp is not even on the TCOYF chart. I'm really concerned that this might be a sign for a thyroid condition. Did you have any symptoms? I'm trying to get my insurance settled so I can go for a check up.
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Old Mar 8th, 2008, 02:37 PM   #15
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Quote:
Originally Posted by alo6 View Post
I'm so sorry to hear the news sara and clara. My SIL was diagnosed with a thyroid condition and just gave birth to a healthy baby boy (IVF), so there is hope. I'm a bit concerned now too. I've been taking my waking temp for 2 months now and it is extremely low. My temp is not even on the TCOYF chart. I'm really concerned that this might be a sign for a thyroid condition. Did you have any symptoms? I'm trying to get my insurance settled so I can go for a check up.
Low temperature can be a sign of hypothyroid (low thyroid), but the good news with that is that even though it has to be watched closely during pregnancy, it usually is easier to control than overactive thyroid (which is what the original poster and I have), and the medicine to treat it poses no harm to a baby. So all the scary stuff we've been writing in the other posts does not apply.

Some other symptoms of low thyroid are weight gain, cold intolerance, fatigue, and lots of other things. It can affect your menstrual cycles, and thus the ability to conceive. They can diagnose it with a blood test, though, so I would say get it checked, but I wouldn't be too worried. Your thyroid may be just fine.
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