[hmm0304]

#1059666

Hello,

I was diagnosed with Graves disease about a month ago and since then have been taking 5mg Methimazole daily. I am nursing my 8 month old son so my endo suggested taking a small dose to start. My son just had his bloodwork done this week to make sure his thyroid levels were normal and thank goodness everything came back normal.

Today I just went for a second opinion with another Endocrine group and saw one of the doctors nurse practitioners. I had bloodwork done and she called me tonight with the results and said I am still very hyperthyroid and she would like to increase my Methimazole to 20mg a day. She said she does not recommend breastfeeding on 20mg on Methimazole and that I should start weaning my son.

This breaks my heart. I am so unsure what to do. I went to this new practice because they have come highly recommended and they seemed pretty informative, even telling me about side effects of Methimazole that my other endo never mentioned. It took me weeks to get in and even then I just saw the nurse practitioner.

She recommended RAI or surgery as definitive treatments options and I set up a consultation with the surgeon (who is not available for a month and a half).

Long story short, does anyone know if 20mg of Methimazole is safe to take and continue nursing?? At least until I can schedule surgery?

Thanks for any information you can offer!

[Kimberly]

#1176630

Hello – We’re fellow patients here, not doctors, so we can’t give medical advice. However, this piece on thyroid issues during pregnancy and postpartum will hopefully be of interest.

(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, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2011.0087.pdf

The section on treating hyperthyroidism in lactating women is on page 1096 of the original journal article (or page 16 if you download it as a PDF document).

This guidance states that 20-30 mg of methimazole is considered safe while breastfeeding, although keep in mind that these are *general* guidelines. You and your doctor will need to decide the best course of action for your personal situation.

Wishing you all the best!

[snelsen]

#1176631

I suggest you do read Kimberly’s reference. Nurse practitioners are great, really great. But I would not make abrupt decisions, based on what she said. I am hoping you get copies of your labs and visits. If you aren’t I strongly suggest this. Also, I am guessing that you had your labs drawn at a different lab, and it is possible that their ranges differ from your first lab.

Sounds like your baby and you are doing great, his labs are fine, and I do realize this phone call is disturbing. But labs are part of the story, not the whole thing. What also matters, are your symptoms, how you feel. Sounds like you are feeling much better , less hyper.

REalize I am just another poster-but I do not think you need to be overly concerned at this time. Your baby is fine, he is being followed closely. If I had waited all that time, I would have expected to see, and establish a relationship with the endocrinologist. Maybe, down the road, seeing a NP is fine. But (as an RN who has a ton of NP friends) I would take this whole situation very slowly, increase your ATD if you want to, and/or call the ENDO, explain this, and ask if you can increase it slowly, say to 10 mgm. A jump from 5 to 20 seems very extreme.

Another thought is,that, now that you have had your second opinion, maybe you have learned that you have more attention and thoughtfulness from your first endo. Just ’cause it is a 2nd opinion, does not mean it is better……
My two cents!
I was a breastfeeding mom, totally loved it. So go slowly with this, is my thinking…..
Shirley

[snelsen]

#1176632

Also, do not be concerned about questioning decisions. I would question such a big jump in the ATD, you sure don’t want to end up being a hypo blob, which, as hard as it is to imagine, hypo is terrible in a different way than hyper
Most docs tend to increase ATD VERY slowly, for this reason. With frequent labs.
Re side effects of MMI, I am not sure what you learned that you didn’t know.
Or, perhaps this step got missed completely. I find that docs depend more and more on pharmacists to go over meds and side effects, especially when a patient gets a new med. This is becoming the standard of care, rather than the exception, in health care.
shirley

[adenure]

#1176633

Hi!

I agree with Shirley. Ask if you can increase the methimazole more slowly- from 5 to 10 and so forth. I was on 5 mg. daily and breastfed my baby at the time. I had to stop the meds. bc my liver enzymes shot up quite a lot (8 times the normal amount), so I had surgery 6 weeks later to remove my thyroid (that was 7 months ago). I breastfed through the whole thing except for a week where I had to wean temporarily (I pumped and dumped) to take the SSKI potassium iodine drops to prepare for surgery. Really stunk, but I was really glad I stuck it out and pumped. I’m still breastfeeding my now 14 month old and all is well.

We are not doctors, however, Dr. Thomas Hale’s specialty is medicines and breastmilk. He has done many studies about infants’ risks with various medications. I’ll post his findings regarding methimazole down below. My endocrinologist and pediatrician both agreed that up to 20 mg. a day of methimazole was safe (with periodic testing of my baby’s TSH- every 3 months or so). Because my liver enzymes had the reaction they did, I never had to go to far on the drug. Also the 5 mg. did level me out.

Here you go: (remember that sometimes a medication is given an “L3” rating simply bc there haven’t been the required number of studies to be given the L2 rating. It isn’t necessarily that it IS an L3, but that further studies are needed for the L2. L3 is still considered safe at a certain dose.)

METHIMAZOLE

Trade Names: Tapazole

Uses: Antithyroid agent

LRC: L3

AAP: Maternal Medication Usually Compatible with Breastfeeding

Methimazole, carbimazole, and propylthiouracil are used to inhibit the secretion of thyroxine. Carbimazole is a prodrug of methimazole and is rapidly converted to methimazole. Milk levels of methimazole depend on maternal dose but appear too low to produce clinical effect. In one study of a patient receiving 2.5 mg methimazole every 12 hours, the milk/serum ratio was 1.16, and the dose per day was calculated at 16-39 µg methimazole. This was equivalent to 7-16% of the maternal dose. In a study of 35 lactating women receiving 5 to 20 mg/day of methimazole, no changes in the infant thyroid function were noted in any infant, even those at higher doses. Further, studies by Lamberg in 11 women, who were treated with the methimazole derivative carbimazole (5-15 mg daily, equal to 3.3 -10 mg methimazole), found all 11 infants had normal thyroid function following maternal treatments. Thus, in small maternal doses, methimazole may also be safe for the nursing mother. In a study of a woman with twins who was receiving up to 30 mg carbimazole daily, the average methimazole concentration in milk was 43 µg/L. The average plasma concentrations in the twin infants were 45 and 52 ng/mL, which is below therapeutic range. Methimazole milk concentrations peaked at 2-4 hours after a carbimazole dose. No changes in thyroid function in these infants were noted. In a large study of over 134 thyrotoxic lactating mothers and their infants. Methimazole therapy was initiated at 10-30 mg/day for one month, and reduced to 5-10 mg/day subsequently. Even at methimazole doses of 20 mg/day, no changes in infant TSH, T4 or T3 were noted in over 12 months of study. The authors conclude that both PTU and methimazole can safely be administered during lactation. However, during the first few months of therapy, monitoring of infant thyroid functioning is recommended.

[snelsen]

#1176634

I WAS HOPING you’d see the post, Alexis. So so nice to know how much you have behind you! Have you ever gone back and read your posts agonizing on WHAT TO DO???? I am sure the little boy is sweet, sweet sweet.
Shlrley

[Bobbi]

#1176635

Nobody here can tell you whether or not the 20 mg dose of methimazole is safe for YOUR baby.

What I gleaned from reading your post, hmm0304, was that:

1) you waited months to get into a specific endocrine practice that comes highly recommended;
2) you were told that the dose of methimazole you were on was not providing you with normal levels of thyroid hormone, so you are still sick;
3) the nurse practitioner in this highly recommended practice does not feel comfortable with the idea of you continuing to breast feed on the higher dose that you (probably) need to have normal levels of thyroid hormone yourself.

In addition:
4) FACT: methimazole crosses through breast milk into our babies;
5) FACT: the methimazole that crosses through to the baby LOWERS your baby’s thyroid hormone levels; The issue is whether or not it is lowering those levels sufficiently to harm your baby.

And this last issue is, at least in part, a judgment call that none of us here are qualified to make. The nurse practitioner is qualified; an endocrinologist is qualified; your baby’s pediatrician may be qualified.

You are indeed in a difficult spot. But listen to the professional people you have hired to provide you with guidance and medical expertise. And, keep in mind, that your health is important. Your baby needs a healthy mother.

[snelsen]

#1176636

Bobbi, your post is a bit unsettling, for it seems you have jumped to conclusions that are incorrect. Especially #1, which may have affected the rest of your comments.

1. Your comment on her post that she had Graves’ for months and months is not accurate. It is wrong. I think you did not read it correctly. She has had Graves’ only a MONTH. She was already seeing an endo, and she decided to get a second opinion from another one. (In addition, her baby is being followed with labs and check ups.)

2&3-Yes, she was told that her labs indicated that she did not have a normal thyroid level. She was told by a NP. She was new to the practice,and did not even SEE an endo. This is not good medicine when the provider does not even see a new patient, when she went to an endo for a 2nd opinion. She was not able to question anything at the time, for she did not know anything until she received her phone call. There are a lot of variables to consider, which, if she had seen the endo for a 2nd opinion, one big variable is that she has been on MMI only a month.

4. FACT- of course she knows there is some crossover in breast milk. THat is why her baby is having good care, and having labs drawn. His levels were within normal limits.

And, it is a pretty blanket statement to say the the NP is qualified to make a judgement call to increase the MMI by 400%. But more significantly, she went to have a consult with an endo, as a new patient, and she did not even see one! I’d be very bothered by this, as she is.

5. I read your facts ,but I did not see your evidence based, references, or any reference for anything your said.

I don’t think any of us who replied, are making a judgment call at all. We have not told her what to do. We wrote about our experiences, and Alexis and Kimberly did provide valid references. You did not. Of course she needs, and plans to follow up on this with some endo, and what we have written provides questions for her to ask.
Shirley

[LaurelM]

#1176637

Hi,

My now 8 year old was about 8 months old when I was diagnosed. I was also nursing. I was started out at 30 mg of Methimazole and was able to taper down over about 3 months. I was totally freaked out about taking a medication while nursing. My endo wanted me to keep nursing. My baby’s doctor consulted with the pediatric endos at our regional children’s hospital and they were also supportive of continued nursing. We did do periodic checks of our baby’s thyroid levels and they were always fine. I was able to continue nursing for several months (until she lost interest). She is a very happy and healthy 8 year old and is doing well in school.

I was still on a small dose of Methimazole when I became pregnant with out 2nd and was switched to PTU for about a month (what I actually kept down :rolleyes:). I stayed in remission after our second was born for close to 6 years and just recently relasped but am doing well on ATD again.

I understand it is a really difficult time with a little one. I also would have noted that American Academy of Pediatrics statement that Adenture provided. I would also consider that the NP while I am sure skilled, is not a pediatrician or an endocrinologist and may not really be knowledgable about the issues with babies and breastfeeding. My own GP said to me when she first got my hyperthyroid test results back ‘I don’t do Grave’s. You need a specialist.’

Best wishes for you and your little one.

Laurel

[hmm0304]

#1176638

Thanks for all the input and suggestions everyone. I was told when i made my appointment with this practice that the doctor I wanted to see was not available for 4 months but his nurse practitioner was, so I decided to see her. So it wasn’t a huge shock that I didn’t see an endo, but I guess still kind of bothers me that it is so hard to get into this group.

I have put a call into the NP this morning to talk about slowly increasing my meds. I have also called my son’s ped to discuss what this means for him.

I really am leaning towards surgery. Now I just need to decide which practice to stick with. The NP’s group did come highly reccommended and they have a very experienced surgeon so even though it is tough to get into, I feel maybe
it’s worth the wait.

This is all so overwhelming. I’ll let you know what happens. Thanks again, it was really good to read all the information and suggestions.

[Author]

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