[StacyA]

#1059505

Likely Graves as my mom had severe case of it post partum, otherwise the nodule is causing the hyper issues. Either way I need to be treated. I am on beta blockers which help the heart racing but it still pounds and I am still awfully cranky and nervous.
Id love to speak to anyone who has any advice on this. Im worried. Thanks!

Tsh <.01 ( scale. 4-4.50 mIU/l.)
T4 free 1.7( scale .8-1.8 nt/dl)
T3;total 266( scale 76-181 nt/dl)
Ferritin 93( scale. 10-154)

then one more test, a few days more recent

t4 free ( in range ) 1.8 reference .8 – 1.8 ng (I believe this result is an increase from last week when it tested at 1.7, already the high end)
t3 free (out of range , by a ton) 7.2 reference 2.3 – 4.2 pg
thyroid peroxidase ab (out of range by a ton) 382 reference 35 IU
Thyroglobulin (in range) <20 reference <20 iu
Vitamin D 25-OH Total 28 (out of range) reference 30-100 ng

Ultrasound of thyroid:

Clinical information: Hyperthyroid
Findings:
Right Lobe 4×1.8×1.4 cm
Left Lobe 4x 1.7×1.8 cm
Isthmus .3 cm

There is diffuse heterogeneous echogenicity on the thyroid gland.

There is a 1 x .6 x .8 cm hypoechoic nodule on the lower pole of the right lobe. No other discrete nodular cyst is scene.

Impression: Heterogeneous thyroid gland with a nodule.

My endo does not use PTU as she feels its too taxing on liver. She will prob put me on metimazole as soon as blood work is back. It has recently in past few years been approved safe for nursing, a category B. It is not recommended during first trimester of pregnancy, but can otherwise also be taken by pregnant women, as of newer studies.

[Kimberly]

#1175202

Hello and welcome! One question for your doc would be how confident she is that you are dealing with Graves’ versus postpartum thyroiditis (PPT), which can also cause hyperthyroidism. The root cause of your issues will help determine your next steps and treatment options.

If you do end up with a diagnosis of Graves’, I know that we have had many posters over the years who have taken anti-thyroid drugs while breast feeding. Hopefully, some of them will chime in, but you might also use the “search posts” feature in the top right-hand corner of the screen to check out some of their stories.

Also, this medical guidance from the American Thyroid Association has a section on the treatment of thyroid issues during pregnancy. The sections on postpartum thyroiditis and using anti-thyroid drugs while breastfeeding start on Page 16.

(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/pregnancy

Hope this helps!

[adenure]

#1175203

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.

[adenure]

#1175204

I read over my post- it’s a tad incoherent- Sorry! I hope it helps some though. To let you know, 5 months post surgery, I’m doing pretty well. Not 100% pre Graves, but really, really well. Much, much, much better than when I was hyper. I exercise, take care of my family, homeschool my boys, enjoy life, and am doing well. I haven’t gained any weight. My headaches and insomnia (which I dealt with while my Synthroid dose was being adjusted) have pretty much gone away along with the teeny tiny bit of anxiety that I still had. Life will get better- whichever path you choose to get better- it will happen.

[StacyA]

#1175205

Thanks Ladies!

Alexis, in the lactation book I referenced at my local hospital/nicu, the methimazole is a category L2. What year are those from? I am hoping its still an L2…

I dont want to wean even for a few days…
But I must say, that is awesome that you were able to and still get back to nursing, many people cant pick up where they left off! Good for you!

I *want*, ideally, to be able to take the meds for a year and then deal with the thyroid removal after the baby is two. Will that happen? Well it depends on how I respond to them including the effectiveness and side effects. Otherwise, I dont know what I am going to do. Its a whirlwind andI am really depressed about it. I do not want to stop nursing for another year. I cant be sick, either. It’s a fine balance.

I dont think its post partum thyroidosis because shes already a year old, and I have high antibodies indicating auto immunities. But without the RAIuptake its all going to be a little less clear.

My endo wont use PTU as shes says its fallen out of favor due to liver side effects and the book we have shows both methimazole and ptu as a L2. But you have a different copy, I see. Hmm, I have to work on researching the date of the paperwork you quoted, unles you know the date? It looks like early 90s?? I hope its the older one
I can call the hospital to see the date on their lactation guide.

Iam glad youre doing well. It gives me hope…
Ill post my new results next tuesday- probably thats when theyll be in. Id love to hear more from you and Shirley if she sees this, and anyone else who can join in.

[adenure]

#1175206

Hi!

I don’t know what year it is from. I asked my friend (she’s a LLL consultant) and she forwarded me this info. She did tell me, however, that an L3 is not necessarily bad. A drug is often labeled L3 simply because enough testing has not been done to give it the L2 label. My LLL friend has 4 children and she also has Graves Disease. She had her 4 children and nursed them all for many years while she was on PTU and methimazole off and on over 10 years time. All her children are healthy and well.

I really do understand your dilemma; it was very depressing and stressful for me. The only reason I had to have surgery right away is because I had to stop the methimazole right away because of my liver panel labs- literally 8 times the normal amount and my liver enzymes were normal before starting the meds. So, that was a HUGE stress. I was so, so fortunate that my levels were normalized in those 7 weeks I was on it and stayed that way to allow me to get surgery. The ONLY reason I got the uptake scan was to be 100% sure before having surgery. I didn’t have the uptake scan before starting the methimazole. My endo was 95% sure it was Graves based on my labs & antibody testing. I would give the methimazole a chance, have a TSH baseline of your baby done and testing every 3-4 months of your baby’s TSH to make sure everything is okay there. Do ask for liver labs with your first set of labs after taking methimazole. I had NO symptoms of liver problems, yet the enzymes were as they were all the same. Again, I’m fine now; an ultrasound of my liver showed all to be well too. If you start the methimazole (within the dosage specified in the documents and with your pediatrician’s approval), you can continue nursing without any problem. Maybe you’ll go into remission. I must say though, that I feel better with normal levels now, post surgery, than I did with normal levels on methimazole– especially as far as anxiety goes. Good luck to you! Let us know how you’re doing!

[LaurelM]

#1175207

Hi,

I was about 8 months post-partum and breastfeeding when I was first diagnosed. My endo diagnosed me based on my labs (including TSI). He did not want to have me do an uptake scan so that I would not have to interrupt nursing. He was very confident based on just the labs that we had the right diagnosis. I was started on a pretty high dose of Methimazole (I also took a beta-blocker) and was then able to start tapering to a lower dose within a couple of months. My endo and our family physician were all supportive of continued nursing. Our family doc even consulted a pediatric endo at our regional children’s hospital for advice. It was recommended that our daughter’s thyroid levels be checked (via heal stick) periodically just to be super safe. There were never any issues. My ‘baby’ will be eight next month and is happy, healthy, and doing very well in school.

When we got pregnant with our 2nd, I was switched to PTU but was tapered off after only a few weeks. (Our 2nd daughter also happy, healthy, and doing well in school.) I ended up having a near 6 year remission. Remission was great but I relapsed last spring and am back on an ATD.

If you have any other questions about my experience, I’d be happy to answer as best I can.

Take care!

Laurel

[StacyA]

#1175208

thanks, guys… Im freaking out. Your words are so helpful for my peace of mind

[Author]

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