[smjrusso]

#1059153

This may be long…I have Graves disease and was treated with RAI. I am now hypothyroid and taking levoxyl. 7 months later I became pregnant ( I was given the go-ahead as my levels were stable). My pregnancy went well and my daughter was born last month. Of the 2% chance of her developing hyperthyroid, she did unfortunately. While her bloodwork indicates hyperthyroid, she thankfully has not demonstrated any other signs such as tachycardia, high blood pressure, or being jittery. She is also gaining weight nicely.

They believe it will be transient, but she has to take methimazole and be monitored regularly for a while. Her blood work is coming into range, but not yet. They slightly raised her medication 2 times and is currently taking 1ml/3x a day We are very concerned with the effect of the methimazole on her liver and blood count. I’m wondering if anyone has information on this?

The pediatric endocronoligist said it was safe to breastfeed, but now my husband is questioning this. Does anyone know if it is safe to breastfeed? The endo said the antibodies cross over to the milk but very minimally. Kellymom website said that it does not cross over.

[Kimberly]

#1172556

Hello and welcome – I haven’t seen a lot of research on antibodies and breastfeeding. The following was a VERY small study that seems to indicate that antibodies (TRAb) are present in breast milk:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/16886586

Your doctor should be able to give you the best info as to the pros and cons of continuing to breastfeed if you still have circulating antibodies.

The worst of the side effects with anti-thyroid drugs are rare, and methimazole has a much better safety track record with regard to liver issues than the other anti-thyroid drug (PTU). However, the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists notes that a doctor should be contacted immediately if any of the following occur in a pediatric patient:

“Pruritic (itching) rash, jaundice (yellowing of the skin/eyes), acolic (pale) stools or dark urine, arthralgias (joint pain), abdominal pain, nausea, fatigue, fever, or pharyngitis (sore throat).”

Wishing you and your family all the best!

[LaurelM]

#1172557

Hello!

So sorry you and your little one have to deal with this.

I was told to breastfeed both of my babies but we didn’t have to deal with neonatal GD so our situation was not quite the same.

I would take confidence from what the pediatric endo tells you but if you are still uncertain, it is always OK to get a second opinion. If you decide on a second opinion, I’d recommend trying to find another pediatric endo as they are the experts in your scenario.

Best wishes for this stressful time and keep us posted!

Laurel

[snelsen]

#1172558

Hi, and congratulations on a lovely new one month old baby!
I think your little one is having very good care, from a pediatric endocrinologist, who has a lot of knowledge and experience because of his specialty.
From every angle, your baby is getting good care and good management. My belief, and I think yours, (and CERTAINLY the thought of Alexis, who has posted here recently) is that breast feeding is the best for the baby and for you. I think in this case, whether antibodies are/are not present in the breast milk, is trumped by the skilled care, management and knowledge that your pediatric endo has to care for your baby. He is very aware of labs, and watching your little one closely.
So he is probably the very best resource for you to follow.
Again, congratulations to you. I remember one month olds! You must be tired! My babies liked to eat frequently at night at that age.
Shirley

[adenure]

#1172559

Hi

I was diagnosed with Graves and had/ have the antibodies present in my blood. I didn’t stop breastfeeding at all, but my son never was hyperthyroid. We tested his TSH after I was diagnosed and started methimazole just to get a baseline for his TSH & make sure the methimazole that I was taking wasn’t effecting him. My endo, my pediatrician & my primary care doctor- none of them ever mentioned I could pass antibodies to him. Maybe it is different for a baby who is currently hyper, but I’m not sure. I never thought to ask and they never said anything. My baby is 7 months old and had his 6 mo. well visit and was fine. Again, no one ever mentioned anything about passing the antibodies. I did a whole boat load of research about Graves and breastfeeding, medications and the like and I never saw anything about a mom having to stop nursing because she has Graves (for that sole reason that is). I did wean temporarly to get an uptake scan & to take meds. to prep. for surgery, but that was all. I also remember when RAI was presented to me as an option, I was told that although I couldn’t nurse my current child again, if I had another baby in the future, I could safely nurse him/ her.

Alexis

[smjrusso]

#1172560

Thank you all for your posts. I just wish there was more information out there on my case. There really is no info specifically on passing antibodies in breastmilk. I think that even the professionals are not that informed since this only happens in 2-5% of cases.

Just when I feel somewhat content with things, I get someone like my mom or husband that make me 2nd guess my choices.

The thought of doing something that can harm my baby makes me sick. I am already ridden with guilt over her having to deal with this and if there was anything else I could have done differently while pregnant.

[smjrusso]

#1172561

Thank you all for your posts. I just wish there was more information out there on my case. There really is no info specifically on passing antibodies in breastmilk. I think that even the professionals are not that informed since this only happens in 2-5% of cases.

Just when I feel somewhat content with things, I get someone like my mom or husband that make me 2nd guess my choices.

The thought of doing something that can harm my baby makes me sick. I am already ridden with guilt over her having to deal with this and if there was anything else I could have done differently while pregnant.

[adenure]

#1172562

The big, bad mom- guilt monster. I hear you there; we all have it in one way or another. The what if’s and how we could’ve done things differently. My endo. said something to me once (well maybe a few times)… he said if you read everything, you’ll never do anything. I research stuff soooo much that at times, it becomes paralyzing! Like when I was searching for treatment options and reading all the side effects and possible ways things could go wrong. My goodness, I couldn’t make a choice for anything about what to do about ATD’s (in the beginning), surgery, RAI etc etc… All of a sudden you’re stuck and don’t do anything to make your life better or move forward.

I think what we have to do is do our homework (so to speak), learn what we can/ become educated, talk with our doctors and then make the decision that seems to be the best one for ourselves, hope for the best and don’t look back. I know it sounds way easier than it is, but every choice we make has the possibility of having something going wrong— even something as simple as walking out the door and going to the store. Who knows what will happen, but are we going to stay in our house the rest of our life? Hopefully not. You and I both have Graves, we’ve both been treated (you with RAI, me with surgery), we’re both breastfeeding our babies. Might we pass the antibodies? I don’t know- it sounds like you read 2-5%? I had never heard of it, my doctors never mentioned it. I suppose there is a possibility, but I don’t see it as being on the same level as other illnesses- like someone breastfeeding who has HIV for example. So, even though I read your post, I still feel comfortable nursing my son. I’m going to make the choice to continue nursing feeling that the benefit of breastmilk for him outweighs the outside chance of him receiving Graves antibodies. You might choose differently and that’s okay too. But, like my endo. said, at some point you have to make a choice in order to be at peace and move forward- knowing that nothing is a guarantee. Believe me, I have plenty of those if I had done this, maybe my child wouldn’t be dealing with that (I have 3 other boys)… but, who is to say what they deal with has anything to do with what I did. For example, I didn’t nurse my 1st son (he only nursed 1 month) and he suffers from asthma and severe anaphylaxis to peanuts. What if I had breastfed him & dealt with the pain early on; maybe he wouldn’t have asthma & food allergies. But who’s to say? It’s that kind of thing that haunts us, but we can’t beat ourselves up over it- or try not to anyway.

Alexis

[adenure]

#1172563

Also, I did breastfeed my 2nd & 3rd sons for 2 & 3 years. They have no asthma of allergy issues. So, that is one reason why nursing for me is very important; I’m hoping I can help my youngest avoid dealing with those issues. My mom & aunt suffer from anaphylaxis as well (food & medication) so, breastfeeding my baby is important in that I’m hoping to avoid him getting those problems. Again- it’s about weighing the potential risks & benefits.

Alexis

[snelsen]

#1172564

Hi, I’d like to reinforce to you that your baby is having good care. For us to read a small study about antibodies, when you have a pediatric neonatologist on board, does not make us qualified to decide anything. The presence or absence of antibodies has absolutely nothing to do with the treatment of your baby. Your baby will be treated for her hyperthyroidism. If you stop nursing, she will still be treated for hyperthyroidism.
So ask him that question.

Of course there is nothing you could have done differently. Same as if you were RH negative, the baby would be treated if needed. Same if your baby had immature lungs, or low birth weight. You could not have done anything differently then, either.

I guess you have to think and feel it over, and do what you will feel most at ease about. For me, from a distance, and probably if I were in your exact same situation, I would put much more weight on what the docs are saying, and how good it is for a baby to breast feed when you can, and I would weigh that against the lack of knowledge and anxiety of your mom and husband.
And yourself.

If this is so distressing for you, if you continue to breast feed, then make another decision. Try to think it through, do the right thing for you as well as your child. If you are a nervous wreck over this, then decide to wean her. Of course if you believe you are harming here, despite the close medical follow up by the neonatologist, then you must do what is right for you. Bottle feeding is an option, and some people choose it.

My situation is different, but I had one. To give a little background, I had a baby, was hyperthyroid a few days after delivery, which means that I was most likely undiagnosed for some time before, when I was pregnant. I breast feed, took the necessary drugs for being hyper, took the KI drops before my surgery, had my surgery, continued to breast feed. My baby was not hyper, but I was. If he needed to take ATD’s, I would have continued to breast feed. My docs, even back then, said it would have been fine.

I hate to have you experiencing so much distress and stress with this. YOu are tired, with a newborn, and this is hard for both of you.
Shirley best wishes with whatever you decide

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