[EHow11]

#1017890

Hi Everyone,

I am a 29 year old female who just had her second baby four months ago. At my two month mark, I had my annual physical where my blood was taken. My labs came back indicating I was hyper. Another four weeks passed and my labs went up considerably again. At this time I had the uptake scan and last week my scan showed that my entire thyroid was enlarged. My endo determined that I have Graves disease (my Mom also has Graves although she was diagnosed at 55 years old).

My endo originally wanted me to have the RAI done. However, I am currently nursing and plan to for another 6-8 months so she put me on methimazole (30 mg). I take the whole 30 mg after dinner and then dump my milk for the next 8 hours. After 8 hours passes, I then am able to nurse my daughter again.

I am very overwhelmed with all of the information out there. I want to grow my family and of course don’t want to do anything that is going to harm my babies or myself. My endo said when I stop nursing, I can then have RAI and resume having children post-RAI (6 months – year).

The amount of stories I read indicating RAI was a bad experience are overwhelming. I then read information saying that Graves can cure itself in 1-4 years if I stay on the anti-thyroid medication.

I am concerned that so many people do the RAI and medical professionals recommend it greatly, but then the results can turn out bad with people regretting doing the RAI procedure.

As a younger woman who is normally very healthy and wants to have more babies, this has been a shock to my system and I can’t stop researching Graves, the options to treat it, etc…My goal is to have another 30 years of living my life to the fullest.

If anyone out there has any tips or experiences that may be helpful to me, I’d love to hear them.

Thank you for taking the time to read my post,
Erin

[Kimberly]

#1061480

Hello – I haven’t been in your shoes, but you might do a search on this board for "pregnant" or "pregnancy". There are several women here who have been through the process of selecting a treatment option, knowing that they want to have children in the near future.

P.S. I hope that at 29, you have *way* more than 30 great years left! I have a picture on my bulletin board at home of a woman in Minnesota who is still playing tennis at 93 years old — she’s my inspiration! ” title=”Very Happy” />

[LaurelM]

#1061481

Hi Erin,

I was 33 and 8 months postpartum when I was diagnosed but in hindsight, I had probably been hyper for 4-5 months before I finally went to see my Dr knowing that something was wrong. I too was nursing and wanted to continue. My endo also started me on Methimazole. I started at a fairly high dose but was able to taper down after just a few weeks. My endo had no problem with my continuing nursing and was very supportive of it. My family Dr (for me and baby) consulted with the pediatric endos at our regional children’s hospital and they were also supportive of the continued nursing without restriction (no pump and dump). The only suggestion was to test our baby’s levels periodically (a heel stick was all that was needed – not fun but relatively quick). They tested at her at 4 weeks of me on the meds and then about at 8 week intervals for 2 more times.

I was still on the Methimazole when we got pregnant with our 2nd (Mother Nature brought her ahead of our shedule ” title=”Wink” /> ) My endo switched me to PTU ASAP – not that it mattered much as I wasn’t keeping much down. My levels were good so we stopped it altogether about 6-8 weeks into the pregnancy.

Suprisingly, I have stayed in remission after the birth of our 2nd and I am feeling great. Our 2nd is now 4 1/2. Both kids are happy , bright, and very healthy. It has worked out really well for me. I am aware that it is a remission so there is no guarantee how long it will stick around and I’ll have to make another treatment choice. I will also say that it was still a little worrisome starting a new pregnancy while still on the ATD even though my endo and OB seemed to totally relaxed about it. If I could have forseen the future, I might have gone for the surgical removal with a toddler at home and an upcoming pregnancy. On the other hand, like I said, I’m still in remission and I feel great.

I just wanted to share my story with you as there are a few similarities for where you are now in treatement. I will say that after 2-3 months on the beta-blocker and the Methimazole, I was better able to process information and make better informed decisions. I too became an information junkie. I read books and every scholarly article I could find (trying to discrimate for reliable sources – there is a lot of bunk out on the internet).

I hope this is somewhat helpful. It’s tough having the pressure and uncertainties of being a first time Mom regardless; Grave’s postpartum is a doubly whammy.

Take care of yourself (get extra help when you can) so that you can take care of your little one.

I’d be happy to answer any questions about my experience.
Laurel

[deblitz]

#1061482

Our stories are similar. I was nursing when I was dx, but my daughter was 7ish months old. I nursed until she was a little over 11 months and then weaned so I could do RAI. I was on PTU in the between time.

I am still a little hyper, but my doc said that it is fine, and it is not high enough to have to be on meds.

How did you do an uptake while nursing? I thought you weren’t supposed to… but I could be wrong.

My doc gave me the okay to get pg after 3 months, and I am now 13 weeks along, and everything is going great.

[Ski]

#1061483

You’re getting some great input ~ just want to make a comment or two.

First, all online bulletin boards are skewed toward illness, because those who have had treatment and feel fine do not come looking for help. So please don’t think that seeing a lot of stories about a bad experience with RAI can be quantitatively measured as a legitimate statistic.

The other comment I would make is that many times when people have issues finding and maintaining their best thyroid hormone level, they blame their treatment choice, when in fact that may not be the problem.

Always remember that, in the absence of any other reason to choose one treatment over another, the choice is YOURS. Take a good look at all of your options and figure it out for yourself. Meds are a great option while you go through that process, since they can help you heal in the meantime, and then your brain works better. ” title=”Very Happy” />

[EHow11]

#1061484

First and foremost, THANK YOU for the responses, the input, and encouragement. I am one that really tries to focus on the positive in every situation and since confirming that I have GD, I feel quite overwhelmed with all of the information on the Internet.

Ski, I appreciate you reminding me that the choice is mine and that everyone will have their opinion but it is up to me to do what is best. I think right now, I feel most overwhelmed as I don’t know what is best. I can see the pro’s and con’s in each treatment option and I don’t have "one" that stands out inparticular. From what I do read, I do have to remember that there are thousands (maybe million?) of people out there that have had a positive experience from the treatment they chose. I just hope that I come to a point where I am 100% OK with my path going forward, whether it be RAI or surgery, ya know? Being that it’s so soon, I feel like that day may never come, but I do really think/pray that one day I’ll know what is right for me.

Laurel, Thank you so much for your story! I think the hardest part right now is that I don’t have anyone close to me who can really identify with how I’m feeling, the feelings of confusion and overwhelmingness (is that even a word?!?!) but hearing from you helps put me at ease. Ultimately I want to be a healthy mom/wife and raise healthy children. The thought of not having #3 makes me tear up but at the same time I have two beautiful children and know that I need to take care of myself.

Deblitz, Thank you for commenting. I actually was able to have the uptake scan but I couldn’t nurse for 24 hours (my choice – I could have at 12 hours) so I just pumped and dumped. How was it for you having the RAI and a little one at home? Did it go smoothly? Congrats on #2 – I am so happy to hear that everything is going smoothly!!

The more I’ve thought about everything the last few days, the more I know that I just need to relax, let the methimazole I’m on really start to work and then talk to different doctor’s on their opinions. Ultimately, I do want to make sure that I do what’s best for me so that I can be a healthy wife and mom for many years to come (and hopefully continue to grow my family!)

Thank you all,
Erin

[JennaV]

#1061485

I have a REALLY similar story. I am 27. I was diagnosed with GD after my first child, but it was mild at that point and resolved on its own. After the second child, it came back with a vengeance. I took PTU, which passes into breastmilk at lower concentrations (I talked with my pediatrician and she did not recommend any pumping and dumping, just periodically checking the baby’s thyroid levels–all fine). Just 3 weeks ago, I had a thyroidectomy because I did not want to stop nursing (my baby has a really immature digestive system and projectile vomits from about anything except my milk) and I didn’t want to stay away from my kids for that long. I could nurse almost immediately after the thyroidectomy (just pumped and dumped for a few hours to clear the anesthesia. Right now I am not regulated with my Synthroid dose yet, so that is frustrating, but I am happy with my decision.

My first endo did not want to work with me because I was nursing. He did not put me on ATD’s or anything–just said wait until you wean and then RAI. Second endo said if you are nursing then you are nursing. Your decision, we will work within that framework. That was really refreshing!

Also, one more tip I would have for you is always ask your pediatrician if you need to pump and dump. My endo and my surgeon often said pump and dump for 24 hours after taking this or that, and the pediatrician would say no–nurse right away.

[EHow11]

#1061486

Hi JennaV!

Thanks so much for your reply – I can relate a lot to you!

How did your thyroidectomy go and how was the recovery? Smooth and easy, I hope!

I’m just curious and if you don’t mind sharing, how did you come to the decision to do the thyroidectomy and not stay on the anti-thyroid pills any longer? Did you decide that it was "just time"? I go back and forth on so many different options, at times it’s just completely overwhelming – but I can’t imagine being away from my little one’s either!

Take Care, Erin

[JennaV]

#1061487

Erin,

The thyroidectomy went great. The recovery was much easier than the recovery from giving birth, if that comparison helps. The only really hard thing was that I was not supposed to pick up anything over 10 lbs for 3 weeks, but my surgeon indicated that a little fudging on that rule wouldn’t hurt me. My kids weigh 32 and 21 lbs, respectively, so that meant not picking either up. The older one is almost 3, so not a big deal. The little one just turned one and is not walking, so much more difficult. We had help from family for about a week after surgery, and my husband was able to be home for about a week after that. The third week, I just decided I would pick up the baby when I had to (like to put him in his crib for a nap). That was the hardest part. I am now 3 weeks and 2 days, and the incision is just a pink line–still obvious but it does not look hideous (it did for a week or so).

The reason that I decided to do surgery over ATDs is for future pregnancies and future babies. While I don’t plan to get pregnant in the very near future, we are unable or unwilling to use any of the very effective forms of birth control. Also, I still don’t get my period because of breastfeeding, so I wouldn’t even know if I became pregnant right now. Basically, I could not get used to the idea of being on ATDs during pregnancy. I know people do it, and I know that they most often have healthy babies, but there is a risk for birth defects (both MMI and PTU are considered class D for pregnancy). If anything did happen with a baby while I was on ATDs, I just wouldn’t be able to forgive myself. Just to make really clear–I certainly don’t judge anyone who does use ATDs during pregnancy–I know that for many it it the best option and I know the risk is tiny. But I am one of those people who won’t even take Tylenol while I am pregnant–just in case.

The other thing that convinced me to have the surgery is that I really did not want to go through another GD episode the next time I have a baby,which my endo said is pretty likely, especially if I don’t achieve remission on ATDs prior to the pregnancy. This time was way too difficult for me and my family. I have several other health issues (Celiac disease and a lot of other GI problems), and active GD makes those issues worse because of the chronic diarrhea.

Also, I was always hypo on ATDs and changing the dose and swinging around. That was really difficult, too.

Anyway, I considered my options for several months before deciding. I am happy with the decision so far.

[elf]

#1061488

Mine is a similar story, as well – diagnosed with Graves 8 months post-partum after the 2nd child. I wanted to wean at that point anyways, so it was easier. The meds (PTU) didn’t make me feel "well", though they helped to minimize the symptoms.

I agree with those who say the Internet is filled with people who are dissatisfied. People who are satisfied with their treatment just keep on living and don’t visit boards. I rarely peek into this board.

I had RAI when my kids were 11 months and 2.5 years old. It was 5.5 years ago. In a short few months I got rid of my thick neck and symptoms. I used to visit Graves boards where opinions of an "appropriate" treatment may get contentious. But one has to do what agrees with one’s core beliefs the most. People had RAI and kept having babies. People had surgery and kept having babies. People stayed on meds and kept having babies. There is no right answer. For me, it was RAI, – because of no blood, no pain, fast, clean, done.

I did have a bout with TED though, and that’s what stopped me from having any more children. TED involves a lot of waiting (to burn out, waiting for surgeries), so I got too old to have babies in the process. But not because of my Graves treatment method.

[deblitz]

#1061489

EHow11 wrote:
Deblitz, Thank you for commenting. I actually was able to have the uptake scan but I couldn’t nurse for 24 hours (my choice – I could have at 12 hours) so I just pumped and dumped. How was it for you having the RAI and a little one at home? Did it go smoothly? Congrats on #2 – I am so happy to hear that everything is going smoothly!!

It was okay having the RAI with kids at home, I think I stayed away from them for about 2 weeks (can’t remember) My doctor said it is all about the closeness and duration of contact. So after a few days I was allowed to sit in the living room while they played, but I didn’t give hugs and kisses for a couple weeks. If my husband had to work, I had a relative come over and help to watch them and get them in bed. It wasn’t really bad at all looking back, at the time it wasn’t great, but I knew it had to be done.

I didn’t really think too long about what route to take, my doctor told me RAI was the safest thing to do, with really no recovery time, and that was important to me. I am pretty happy I did it, I am off all meds right now (which may not be permanent) and I am feeling pretty good. I was super nervous about having it done for a while, because I had read all the horror stories, and things about the eyes getting worse and all that… I just figured there are risks to everything, so I had to go with my gut.

Good luck deciding what to do!

[Author]

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