[adenure]

in reply to: Radiation #1172753

Hi

I noticed you said you have a scar on your neck, have headaches, gaining weight, depression- did you have a thyroidectomy and are now hypo waiting for radiation for cancer? Is the scar from a thyroidectomy? Just wondering why you’re having radiation for Graves if you had surgery? I hope all goes well though and that you will be feeling better soon. I don’t think it’s wrong to look forward to any treatment that makes us well! I was scared about my surgery, but I was so ready to do it and move on with life! Tomorrow I’ll be 3 weeks post op and I’m so glad I did it. I feel a whole lot better these days.

Alexis

[adenure]

in reply to: Diagnosed today…confused #1172735

I also had nodules on one side of my thyroid; there were benign.

Alexis

[adenure]

in reply to: Diagnosed today…confused #1172734

Hi Susan & Happy 4th!

Welcome! Yes, being diagnosed with Graves is a tough one to hear. I was diagnosed after having my 4th baby. I was diagnosed with a “95%” certainty of having Graves based on blood work alone. The outside chance of postpartum thyroiditis was there, so I got the scan eventually. The scan confirmed Graves and I drove home in tears. Just knowing for certain was so hard; I wanted to believe it would go away on its own (like thyroiditis does).

I did start with methimazole (ATD), but it was damaging my liver (I had a liver panel lab done 7 weeks into the meds. and it came back as not so good! I didn’t experience liver damage symptoms though- fortunately we caught it early & it reversed itself) On the plus side, the methimazole got my thyroid level balanced and I had surgery 2 1/2 weeks ago! RAI wasn’t an ideal option for me for various reasons (I’m breastfeeding, I’d have to wait 4 months if I weaned to get treated and it just didn’t feel like the right option for me). So, right now I’m on Synthroid and will get my labs done for that in another few weeks to see how my levels look. The surgery went well with no complications and I’m grateful that I did it.

It sounds like you’re not hyper right now (that’s my guess based on your uptake percentages); it sounded like you didn’t expect the diagnosis, so you’re probably not feeling symptoms or haven’t before. My guess is your endo won’t prescribe ATD’s if your thyroid levels are stable (did he/ she test your TSH, T4 & T3?) As a side note, if you decide to go ahead and treat the Graves with RAI or surgery, it’s important to have stable thyroid levels for surgery, and I believe it is ideal to have them stable before RAI as well (although I don’t think it is as important as it is for surgery). If you’re not hyper, is your doctor going to do a “wait and see” type of approach and test your thyroid levels every 2 months or so unless you feel hyper symptoms?

My TSI was 234 I think; the other antibody test was out of range too, not crazy out of range, but still high. My scan percentages were 19% & 34%.

Alexis

[adenure]

in reply to: Breastfeeding mommies? Methamizole? #1172720

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

[adenure]

in reply to: Breastfeeding mommies? Methamizole? #1172719

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! 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

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in reply to: Breastfeeding mommies? Methamizole? #1172717

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

[adenure]

in reply to: Breastfeeding mommies? Methamizole? #1172716

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]

in reply to: 2 wks on Methimazole #1172700

Hi

Yes, it’ll be interesting to see what my numbers look like on the Synthroid. Not exactly hyper symptoms as I am sleeping pretty well, my heart rate is around 69, I’m not hot or have tremors, but sometimes I feel a little razzed or shaky, and some other weird symptoms I had with Graves (hard time breathing- although that isn’t too bad at all right now; numb/ weird sensation in limbs at time- again, comes and goes and chest pain here and there- comes and goes). I emailed my primary about the symptoms, but I’ve had 2 EKG’s since having Graves in the last few months and they were both fine (even at the worst point of being hyper). She also ordered some blood work to check some muscle issues I guess which also help look at the heart- creatine and some others- all normal. I’m guessing my body is just trying to figure out what the heck is going on now From hyper nightmare, to methimazole causing liver issues, to surgery 2 weeks ago, and now Synthroid. My body’s probably like, “Enough already!!!” 😮 Give me a break already! Good thing is though that I’m finally on that road to recovery; just takes time and patience to get the dose right and recover- much like you on methimazole- getting the dose right and then recovering. Ah well- we’ll get there!

Happy 4th to you too!

Alexis

[adenure]

in reply to: Breastfeeding mommies? Methamizole? #1172714

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]

in reply to: Breastfeeding mommies? Methamizole? #1172713

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

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in reply to: Frustrated with Dr. #1172621

Makes me wonder about the doctor saying you’re suffering from a thyroid storm. If you’re suffering from a thyroid storm, you should be in the ER! I think I’ve read if you’re heart rate gets to 120, you should go to the ER. Even though you’re on methimazole, it is probably something to keep in mind. I don’t know, but I want to make sure you’re safe and okay. I’m glad you got a letter from your doctor for work. I hope the new doctor works out better for you.

Alexis

[adenure]

in reply to: 2 wks on Methimazole #1172698

I’m sorry Caro. Don’t get discouraged though. I don’t remember how long you’ve been dealing with being hyper, but 2 weeks might not be enough to see a difference for you. It doesn’t mean that things won’t improve at your next labs.

You mentioned that you’re sleeping better and heat intolerance isn’t as bad; those are good things! Especially sleeping better. I know we want everything to be better right away- me included!!! Believe me. I’m 2 plus weeks out of surgery and although as far as the surgery goes, I feel pretty darn good– I know my Synthroid isn’t quite right and I’m a bit of a symptom mess. I actually think I might be taking too much Synthroid- not sure though. So, even after being treated with something as definitive as surgery, we still deal with the hormones until they get leveled out. It’s frustrating. Try to stay positive- I’m trying too as well. The hardest thing is waiting the next month for the next set of labs and dealing with it all until then. Did your doctor change your dose at all or just want to give it more time. I’m guessing probably just more time since you’re on a pretty high dose already. You probably just have a lot of stored up hormones. When do you go in for your next labs?

Alexis

[adenure]

in reply to: My Thyroidectomy #1172643

VanIsle Gal,

I think everyone’s surgery time is different depending on what the surgeon encounters- lots of variables probably. Mine was 2 hours & my incision is about 2 1/4 inches. Just depends. I think the main thing is to have a surgeon who does a lot of thyroidectomies and is very comfortable doing them. There are certain ways to avoid complications besides finding a competent surgeon as well- like being euthyroid (even thyroid hormone levels) before surgery, being healthy in general, asking if the surgeon uses a nerve stimulator to locate the RLN (Recurrent Laryngeal Nerve) to avoid damage to the vocal chords. Make sure your surgeon is doing the surgery 100% and not residents. As far as incisions (although maybe a vanity thing) asking about a subcuticular stitch is good too- less of a scar.

Alexis

[adenure]

in reply to: Newly diagnosed and scared #1172651

Hey AmyG! I live in San Diego too! Cool! Probably won’t be at the conference though; I have 4 little ones and our lives pretty much revolve around them I homeschool & they’re competitive gymnasts- so life is busy. It’s all good though- love my family!

Alexis

[adenure]

in reply to: Funny Taste in Mouth #1172686

Methimazole didn’t make me lose my mind, but it made me lose my hair some I just remember it really thinned out quite a bit. I hope your taste buds get normal again!

Alexis

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