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  • GLo22
    Participant
    Post count: 13

    Hello ! I’m a new mommy and just diagnosed with GD… My pediatrician, endo, and md are all supportive of me continuing to nurse while taking 10mg MMI daily. I am feeling waaaaay better but would LOVE to hear from any other women who have nursed while on meds?!? Your experience??

    adenure
    Participant
    Post count: 491

    Hi :)

    I was diagnosed with Graves after my 4th son was born and I took methimazole (5 mg a day) while breastfeeding. My son was about 4 months old when I was finally diagnosed & started the meds. My endo and pediatrician were fine with me nursing while taking methimazole (or PTU). Methimazole is considered safe for breastfeeding up to 20 mg. a day. I did have my son’s TSH tested to establish a baseline with the idea of testing him every 3 months.

    Unfortunately, I was part of the 1% who had liver issues on methimazole, so I had to stop taking it 7 weeks into the medication. It did get my thyroid levels under control in that time though. :) I had to stop taking the methimazole and I had a thyroidectomy 2 plus weeks ago and am on Synthroid now (which is completely safe while breastfeeding- if you were to consider a more definitive treatment). As a side note, I would ask to have a liver panel done when you get your blood work done for your thyroid- just to make sure. I didn’t have any symptoms of liver problems, but problems there were all the same. Unlikely to happen, but it does happen- so better to check. Don’t worry about your baby having liver issues as he/ she doesn’t metabolize the drug.

    I’ll post Dr. Thomas Hale’s info. on ATD’s (methimazole & PTU) and nursing for you as soon as I find it.

    Alexis

    adenure
    Participant
    Post count: 491

    Here we are! Dr. Hale’s studies & info. on methimazole & PTU. Also, Shirley on the board breastfed her baby through out her journey with Graves as well.

    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.

    Pregnancy Risk Category: D, D

    Lactation Risk Category: L3, L3

    Adult Concerns: Hypothyroidism, hepatic dysfunction, bleeding, drowsiness, skin rash, nausea, vomiting, fever.

    Pediatric Concerns: None reported in several studies, but propylthiouracil may be a preferred choice in breastfeeding women.

    Drug Interactions: Use with iodinated glycerol, lithium, and potassium iodide may increase toxicity.

    Relative Infant Dose Range: 2.3%

    Adult Dose: 5-30 mg daily.

    Alternatives: Propylthiouracil

    T½ = 6-13 hours M/P = 1.0
    PHL = PB = 0%
    Tmax = 1 hour Oral = 80-95%
    MW = 114 pKa = 11.64
    Vd =
    References
    1. Tegler L, Lindstrom B. Antithyroid drugs in milk. Lancet 1980; 2(8194):591.
    2. Azizi F. Effect of methimazole treatment of maternal thyrotoxicosis on thyroid function in breast-feeding infants. J Pediatr 1996; 128(6):855-858.
    3. Lamberg BA, Ikonen E, Osterlund K, Teramo K, Pekonen F, Peltola J, Valimaki M. Antithyroid treatment of maternal hyperthyroidism during lactation. Clin Endocrinol (Oxf) 1984; 21(1):81-87.
    4. Rylance GW, Woods CG, Donnelly MC, Oliver JS, Alexander WD. Carbimazole and breastfeeding. Lancet 1987; 1(8538):928.
    5. Azizi F, Khoshniat M, Bahrainian M, Hedayati M. Thyroid function and intellectual development of infants nursed by mothers taking methimazole. J Clin Endocrinol Metab 2000; 85(9):3233-3238.

    PROPYLTHIOURACIL

    Trade Names: PTU, Propyl-Thyracil

    Uses: Antithyroid

    LRC: L2

    AAP: Maternal Medication Usually Compatible with Breastfeeding

    Propylthiouracil reduces the production and secretion of thyroxine by the thyroid gland. Only small amounts are secreted into breastmilk. Reports thus far suggest that levels absorbed by infant are too low to produce side effects. In one study of nine patients given 400 mg doses, mean serum and milk levels were 7.7 mg/L and 0.7 mg/L respectively. No changes in infant thyroid have been reported. PTU is the best of antithyroid medications for use in lactating mothers. Monitor infant thyroid function (T4, TSH) carefully during therapy.

    Pregnancy Risk Category: D, D

    Lactation Risk Category: L2, L2

    Adult Concerns: Hypothyroidism, liver toxicity, aplastic anemia, anemia.

    Pediatric Concerns: None reported, but observed closely for thyroid function.

    Drug Interactions: Activity of oral anticoagulants may be potentiated by PTU associated anti-vitamin K activity.

    Relative Infant Dose Range: 1.8%

    Adult Dose: 100 mg TID

    Alternatives:

    T½ = 1.5-5 hours M/P = 0.1
    PHL = PB = 80-95%
    Tmax = 1 hours Oral = 50-95%
    MW = 170 pKa = 12.89
    Vd = 0.87
    References
    1. Cooper DS. Antithyroid drugs: to breast-feed or not to breast-feed. Am J Obstet Gynecol 1987; 157(2):234-235.
    2. Kampmann JP, Johansen K, Hansen JM, Helweg J. Propylthiouracil in human milk. Revision of a dogma. Lancet 1980; 1(8171):736-737.

    GLo22
    Participant
    Post count: 13

    THANKS! I had read your post under a search thread. So how are you doing now? How was the thyroidectomy? I am considering a long term treatment as I hope to have another baby eventually. :)

    Did you experience any drop off in your milk levels as your levels came down? This is something my lactation consultant has warned me about and I am wondering if anyone else has some experience with that…

    My endo is checking my liver levels and my peds is monitoring our sons THS and thyroid T3/T4 every six weeks or if I feel there is a need. Everyone I have worked with in my care plan has been very helpful and amazing. I’m lucky.

    Thanks for your reply!! It’s encouraging.

    I was feeling so tired about 2 months post partum and I thought, ” OMG how could anyone have more than one baby??”. NOw that I’m feeling better I’m more thinking, ” OK! I can handle this!”:D

    adenure
    Participant
    Post count: 491

    Hi!

    I’m doing pretty well; not 100% by any stretch though. I’m only 2 weeks and 3 days post surgery though, so it’ll take time. I’m on 100 micrograms of Synthroid; I think it’s doing a pretty good job, but maybe not quite right on the dose; I think it’s close though. Not sure if some of the “off symptoms” and tiredness are from recuperating from surgery, having Graves/ being hyper for the months that I was, or what– but, I know I’ll be okay; just takes time.

    The surgery itself went very well with no complications; I was fortunate to have an amazing surgeon who did an excellent job. That is one thing I’d say; if you go with surgery, do your research and make sure you have a great surgeon. I did have to wean temporarily (8 days) to take SSKI (potassium iodine drops) to prepare for the surgery. The drops shrink the thyroid and draw blood away from it so it’s easier to operate on. My pediatrician didn’t want me to nurse while taking them so I pumped with a hospital grade pump those 8 days- what a pain, but totally worth it as I’m still breastfeeding and my supply is fine. I also weaned 4 days to get the radioactive uptake scan (to rule out postpartum thyroiditis and confirm Graves). My blood work all indicated Graves, but the scan was the only way to know 100%. I’ve never had any supply issues on methimazole; you’ll probably be okay there. I think if you go hypo, it’s possible to have supply issues, but with careful monitoring of your levels, they’ll catch that.

    You can have children while taking ATD’s. I think PTU is recommended for the 1st trimester and then either PTU or methimazole is okay for the last 2 trimesters- not sure though. Truthfully though, even though we’re not planning on having anymore children, if I were to get pregnant, the idea of still having my thyroid and worrying about going hyper and being on the ATD’s was too worrisome for me. I never wanted to experience the hyper nightmare again- especially with a newborn and other children (and we homeschool), it was a real nightmare. I felt so hopeless, helpless, and useless to my family. It was the scariest time of my life I think or up there anyway! In a way, I’m glad I had an issue was methimazole (sort of) bc it pushed me along to making my decision for surgery (which I had always sort of entertained even before knowing methimazole was causing me issues).

    Starting on the ATD’s is a good thing though. It will hopefully get your levels evened out and give you the opportunity and time to decide how you want to treat your Graves long term.

    Have a great 4th of July & congratulations on your baby! :)

    Alexis

    adenure
    Participant
    Post count: 491

    You probably know this already, but if you choose RAI at some point, you can’t continue breastfeeding your baby. You can breastfeed any other children you have, but not the baby you have now. Also, the nuclear doctor told me that he wouldn’t give me RAI while I was still lactating. So, you have to wean and then once dry, wait 2-3 months before being treated. The doctor told me he’d run an radioactive iodine tracer and then scan my breasts to see if they picked up any iodine. I guess there is a risk of breast cancer (although he didn’t say how big the risk was) if radioactive iodine pools in breast tissue.

    I wanted to keep breastfeeding and I didn’t want to wait 4 months or so to be treated (especially being unable to take ATD’s) so, I opted for surgery. Fortunately for me even though I was only on methimazole 7 weeks, my thyroid levels were stable for the 6 weeks I had to wait to have surgery. I did my scan to confirm Graves during that time, met with a surgeon who I didn’t go with and then finally got to the surgeon who I went with (a surgeon my mom had worked with for many years; she’s a surgical technologist and told me that I should go to him, so I did.) I was very fortunate to stay stable that long (needless to say, I was really worried about going hyper and losing my surgery window, but I had bloodwork done every week until I started the SSKI drops to make sure all was good.) I’m very grateful.

    Alexis

    GLo22
    Participant
    Post count: 13

    WOW!!! I totally sympathize with your journey and thank you so much for sharing with me. YOu filled me in with a lot of great info….I was totally considering RAI once my son was weaned (considering the meds work in the mean time) but knowing about the BrCA risk is scary. Also, I read another post where one lady couldn’t be near her kids for three days post RAI? That would break my heart.

    SO much KUDOS for you to pump through your surgery. You go mama! :) I am starting to think something like surgery will be my choice in the long run. I also don’t want to rely on meds if I am pregnant again – the thyroid is so tricky.

    Can I ask what state you are in? Wondering if I would be able to travel with to your surgeon or if he might reccomend someone around where I am in the long run…but that may be a while away…

    Again THANK YOU so much for sharing. I also was totally scared and felt so helpless not having the energy inside me to keep up with my amazing new baby.

    Much aloha to you!

    :D

    adenure
    Participant
    Post count: 491

    Yes, I think you have to be away from your family for 3-8 days post RAI depending on the dose. I did a lot of research, and for me, RAI wasn’t the answer. It is for some though. That is the nice thing- having choices.

    Sure, I’m in CA. But, I had my surgery done in CT. My parents live there so the surgeon my mom worked with is in Hartford, CT. His name is Dr. Álvaro Oviedo. He is a general surgeon and was awarded with being in the top 10% of surgeons in the nation for 2011. I think he is 72 years old? He tried to retire, but they wouldn’t let him! :P He is that good. He’s also very nice and reassuring. I was anxious going to his office for the consultation, but left feeling a whole lot better!

    There are a lot of great surgeons out there; it’s just a matter of finding them, interviewing them, knowing how many thyroidectomies they do, complication rate. My mom wanted me to ask anyone I interviewed whether they used a nerve stimulator locator to avoid injuring the RLN (recurrent laryngeal nerve) and if the surgeon only would do the surgery (instead of residents helping) and using a subcuticular stitch to have a minimal scar.

    If I had stayed in CA, I would have gone with Dr. Michael Bouvet in La Jolla (problem there was I don’t have insurance that he accepts), but I’m glad I went t my parents’ in CT; it was nice to be there and have them help and to see them. I also felt as confident as I could going into a surgery with a surgeon my mom personally knows and has worked with. She also had one of her anesthesiologist friends who she worked with do my anesthesia. I consider myself very, very fortunate. I said to her, “Who would have thought when you were studying to be a surgical technologist back when I was in middle school that we’d find ourselves in this situation!” Funny how life is like that.

    Alexis

    adenure
    Participant
    Post count: 491

    The hospital Dr. Oviedo works out of is St. Francis. Also the RLN is important because injury to it could cause vocal chord damage.

    Alexis

    GLo22
    Participant
    Post count: 13

    Hi Adenure,

    Thanks again for all the great info ! And thank your mom, too :) She has helped many of us by sharing her knowledge with you which you have been so wonderful to pass on!

    Thanks!

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