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Hi!
I was diagnosed with Graves after my 4th baby was born. I was hyperthyroid about 2 months post partum and diagnosed around 2 months later. I had antibodies, but my endo. told me the only way to know for sure if it is Graves is to do the uptake scan. I too was (and still am!
breastfeeding. So, I didn’t want to do the scan. But, I was able to temporarily wean for 3 days and get the scan done with I-123. It is VERY important to find out what your specific batch of radioactive material will be for the uptake scan if you decide to do it and want to continue nursing. There is an impurity (I think I-125 maybe?) that has a very long half life, so if there is too much of that in the radioactive iodine, then you wouldn’t be able to continue nursing. So, nursing can be continued with an uptake scan, but it takes some planning and communication with the nuclear dept. and a temporary weaning.That being said… I did nurse on 5 mg of methimazole (daily). My baby’s thyroid TSH level was taken to have a baseline to make sure it wasn’t effecting him, but in the end, I had to stop taking it because it was damaging my liver (8 times the normal amount- enzyme levels)- so we never ended up retesting his TSH. Up to 20 mg a day is deemed safe for breastfeeding per Dr. Thomas Hale. I believe 200 or 250 mg of PTU is safe. It is suggested to wait an hour after taking the methimazole before nursing. Sometimes I did, sometimes I didn’t- although I tried to do that everytime, but if my baby was hungry, I let him nurse and my pediatrician didn’t think it was a problem (also given that my dose was small).
In the end, I opted for surgery because I couldn’t take ATD’s (due to the liver problems- which were reversed and all is fine now. I had to stop taking methimazole 7 weeks into treatment and had surgery 6 weeks after that. It did get my levels normal for surgery though!). I had to temporarily wean for 7 days when I was prepping for surgery with SSKI potassium iodine drops- my pediatrician wasn’t okay with me taking those while nursing. So, I pumped and dumped for 7 days and was able to resume nursing after and am still breastfeeding today (He turns 1 tomorrow!!!). So, if, at some point you wanted to have surgery and breastfeed, that is possible. Where RAI (because of the I-131) you would have to wean completely. Although you could breastfeed any other children you would have later.
Here is Dr. Hale’s info:
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.Hi Khadija,
I’m sorry you’re dealing with Graves. This board is a great source of support and information though! I just wanted to say that if you choose RAI or surgery- especially surgery- your endo. will want to have you euthyroid before hand. Surgery becomes much more dangerous and the risk of thyroid storm is much greater bc of the stress on the body of surgery- especially if your hormone levels are out of balance and hyper.
I was one of those who was part of the 1% who had problems with ATD’s. Within 7 weeks on just 5 mg. of methimazole, my liver enzymes increased 8 times the normal amount. The doctor on call told me to stop taking the medication right away and had my liver labs redone 3 days later to make sure my enzymes started to come down- which they did. A few months later, I was back to normal and the abdominal ultrasound showed no damage at all. Fortunately, the liver does regenerate quickly and most people who end up having liver issues on ATD’s will be able to reverse the damage- as long as you are being closely monitored and having a liver panel/ labs done frequently. I didn’t have any of the symptoms of liver issues like jaundice, dark urine etc etc… but, still happened just the same. The one thing the ATD’s DID do for me was get me euthyroid in 7 weeks which allowed me to have surgery!!!
So, although not a possible long term solution, it did let me get to a place where surgery was safe and possible.You may not want to try that, but know that MOST people do not have liver issues with ATD’s, and if you do, they can be stopped and most liver issues are reversed and the body heals itself if caught quickly enough. As a side, when I was on methimazole, I didn’t drink alcohol or take Tylenol as they are metabolized through the liver as well.
I was a dancer- I danced professionally for 6 years, so I understand where you’re coming from there. I don’t dance anymore and haven’t for 15 years or so, but I’m still active and love to exercise. I was fortunate in that my Graves was caught quickly, so although I experienced muscle loss, I rebounded pretty quickly once I had my surgery and started to heal. I’m 4 months post surgery and was able to resume hard cardio, good workouts for about 30 min. at a time at 3 months post surgery. One month of that, and my muscle tone is pretty much back to normal. I took walks and took it relatively easy with exercise from about 2 weeks post surgery until 3 months- then started to rev it up a bit at that point.
I didn’t choose RAI bc I have a family too- I have 4 boys and didn’t want to be away from them and I’m breastfeeding my baby. I also had other concerns, but the big ones were my family, nursing, and not wanting a dead thyroid in my body- kind of weird I guess- but I’d rather have it out, then dead in there.
I would suggest trying the ATD’s if your endo. is willing; the meds. will at the very least, help you get euthyroid which will help you discern better your choices and make the right choice for you & it will make that decision safer as well.
Hi!
I don’t have any good suggestions except perhaps reading online from reputable sites like Mayo Clinic. (http://www.mayoclinic.com/health/thyroidectomy/MY00709)
It summarizes pretty well the in’s and out’s of the surgery, risks and what to expect etc.
I am as guilty as the next guy of worrying like crazy about what could happen with pretty much of everything. I understand your concerns, fears, and wanting to know as much as possible. The best thing you can do is to find the best surgeon you can who has a lot of experience, make sure you are as prepared health wise as possible to have a safe surgery and then move forward and not worry too much about the what if’s and outcomes. (Easier said than done! :rolleyes:– I know.
The one thing we know is that if we can’t take ATD’s for some reason or another or we choose not to, we have to make a choice about how to deal with Graves so that we can be well. Surgery or RAI will do that. They aren’t without their own effects- mostly short term- but, those effects are (I would say) much less serious and dangerous than doing nothing.
I went to the dentist today and the hygenist asked how I was doing. She commented that it was nice to see me smiling again and that I “didn’t look well” last time she saw me (8 months ago right before I started methimazole and was having a hard time with Graves). Surgery gave me that smile back. It gave me my health back. Perfect? No, but better!
Don’t drive yourself too crazy reading all the information out there (like I did!), there are so many horror stories- don’t let it paralyze you from making a decision. My endo. would always tell me that if I worry about everything and read everything, I won’t end up doing anything. He was right too in saying that I had to take care of myself so that I can take care of my family. Do your research with reputable sources, talk with your surgeon, make a decision and stick with it. It’s hard bc you never know and there are no guarantees, but we do know that we can’t live with uncontrolled hyperthyroidism.
I agree with Bobbi,
I had my thyroidectomy 4 months ago and I can honestly say that it has only been in the last few weeks that I’ve had glimmers of being normal, energetic, sleeping well, and living my life without actually (get ready for this) NOT thinking about my health. I felt much, much, much better right after the surgery as far as my hyper symptoms. Most of them were gone immediately, but a few lingered and still linger somewhat, but not nearly as bad as even 2 months ago. It’s amazing how much time it really takes your body to adjust. I was fortunate in that my levels normalized after 1 Synthroid dose adjustment, but I didn’t “feel” normal until about 2 months after that dose increase. Again, I still don’t feel 100% pre- Graves me, but definitely closer than I was. I still get some tension headaches and feel a little off sometimes, but in general, even that is better than a month ago. Keep strong.
Hey Emily
jaqeinquotation posted my post that I would have said to youYour feelings are completely normal. I too was a nervous wreck and cried a lot, even the morning of my surgery- until they gave me something to relax me- (verset) or something like that. Like my post says, just do your best to find the best surgeon who does A LOT of thyroidectomies.
I do feel much better- I too am active and am able to enjoy and live life again now that I’ve had surgery. Do I feel perfectly awesome? No, but then again, who does, right? Most of us have some type of medical issue (or multiple problems), so we do the best to take care of the problems, heal, and live life with our new normal. My new normal is WAY better than being hyper with Graves, that is a definite. ATD’s were not an option for me due to liver issues, so I had to choose. I didn’t feel horrible on methimazole, but not great either. So, I think the surgery was the best choice I made; plus, negative effects of Synthroid aren’t nearly as common or severe as those of ATD’s. Knowing that I won’t be hyper ever again (as long as I have the right dose) is a great comfort. You never know what else is around the corner (I’m hoping for good health for a long time- hopefully!), but it’s good to know that there is one path that I won’t see again- the path of hyperthyroidism!
Hi Amy,
It sounds like methimazole is doing the job! I was only on it 7 weeks bc of elevated liver enzymes (had a liver panel done with the labs), so I had to stop it, but it did get my levels normalized! I opted for a thyroidectomy (instead of RAI) as ATD’s weren’t a possibility anymore.
If you’re allowed to decrease your dose, maybe going for another 6-8 weeks on a lower dose might make some of the symptoms go away and you might get some energy back. If not though, and you decide to choose surgery, the good thing is the methimazole seems to be getting your levels normal which makes surgery much, much safer.
Let us know how the labs come back.
Hi-
I was on methimazole (tapazole) and the SSKI drops, but not the other 2. Just remember removal is just around the corner!!! Then, you’ll be able to get off of the tapazole, SSKi, and inderal (with your doctor’s approval on the inderal but your heart rate should very quickly return to normal after surgery). Mine went from a resting 100- 120 to 62 within days. Yes, feeling crappy while sick with Graves is definitely the norm!I take brand Synthroid- didn’t want to take generic as to make sure I had the same manufacturer every time I got it refilled and more for the consistency. For the most part, I’m doing pretty well. I’ve had one dose change. I started on 100 mcg for 6 weeks, then upped to 112 mcg and have stayed on that- got my levels normal. I started to feel better as far as the Synthroid dose around 3 months or so. Now 4 months out, all in all, I’m doing pretty well- definitely happy with my decision as, although not 100% myself from pre- Graves, definitely WAY, WAY, WAY better than when I was sick!
Good luck to you!
