May have to stop bf because of thyroid problem - so, so sad

[LucyG]

I posted recently about being diagnosed as hyperthyroid. Well, I saw an endocrinologist today. Since I am not really symptomatic, and my levels are not terribly high, she said it was OK to do nothing (medicine, treatment, etc.) for a month. But, her recommendation (if things don't miraculously right themselves) is to have my thyroid killed with radioactive iodine in a couple of months. This will mean complete weaning, AND A WEEK AWAY FROM MY BABY!!!! I can be in the same room with her, but cannot be within four feet. I almost think that would be worse than being totally out of the house. Can you imagine having your baby cry and reach for you, and not being able to go to her? I am researching other options, such as surgical removal of the thyroid, but I have a sinking feeling that bf is going to end sooner for us that I had hoped. Maybe I am being overly dramatic about this, but I am utterly devastated. I cry every time I think about weaning her, and about being away from her if I have the treatment. She's just over five months, so I know I gave her a great start with bf. I just can't help feeling like I've failed somehow, and that I'll have to justify myself when people ask why I stopped bf. Are there any support groups (on the web or otherwise) for people who have to wean before they are ready? Thanks so much for listening. I know that people here really care and understand how special bf is to both mom and baby.

[cara1]

If you are not really symptomatic, and your thyroid function tests are not abnormal, what is the rush? Also, you can treat hyperthyroidism with some medicines other than just radioactive Iodine. I'm not sure if they're compatible with BF (prob. not), but at least you could stay in close contact. Wait the month like she suggested, and see where you're at.. Make sure you explain your concerns, and have her explain exactly why/why not treatment can't wait. And you could always get a second opinion. Good luck.

[jojo2324]

Oh sweetie, I am tears just reading this. I can't imagine how you must feel right now. My heart is aching for you.

Here is my take on the situation. I am not schooled much at all in the way of hyperthyroid, but my mother was diagnosed about a year ago and put on medicine. She stopped taking it, but only because it wasn't working. She is living with it now, and can function normally. She has three kids and leads a very busy life. One thing she's noticed is extreme bloating, puffiness, and in general weight gain that just won't go away. Sometimes she's sick of feeling so tight, but that's been her only complaint really.

You have in NO WAY failed your child. And if somebody were to approach you and insinuate that you had, and expect some sort of justification, then poo-poo to them. You have done a wonderful job so far, and your daughter is lucky for the time you did have together BFing. One way to ensure a healthy, happy child is to have a healthy, happy mama. I know that weaning may break your heart, but in terms of the big picture, it might be for the best. Your health is what is at stake here.

That said, I think that cara1 has a valid point in that if nothing is sounding an alarm or raising red flags, maybe you can forgo treatment and continue BFing. Best of luck to you, and I hope an easier solution presents itself. Hugs!

[flagger]

Email me at flagger /at/ dslr.net

[sntm]

there are other options -- surgical thyroidectomy is an outpatient or overnight visit type of procedre. you would not have to wean for that. talk to a general or endocrine surgeon. your doc does not seem to realize how much of an imposition radioactive treatment would be.

shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[mom2huskies]

The most important thing is to be SURE that it is not postpartum thyroiditis. Have they tested you? I don't think they like to do the radioactive iodine test on nursing mothers- did they use technetium instead? Postpartum thyroiditis is often temporary, which is probably why they want to wait a month, but will they be retesting you after the month is up?
The second most important thing is, that this should not go untreated, whichever way you decide to go. Even with minimal symptoms, the imbalance will affect your energy, your moods, and your health, longterm. I would be far more worried about the radioactivity than on having to give up breastfeeding- you've done a wonderful job so far, and formula is an acceptable alternative!
I was diagnosed with Graves' Disease (a form of hyperthyroidism) 2.5 years ago, and like you, was not really symptomatic. I had the iodine treatment, and it was not as scary as it sounds, but I was given the choice of controlling my levels with drugs, or going the radioactive route. The drugs did not work very well for me, so I went with the iodine.
My recommendations- find out and get several opinions about using the drug route and it's affect on nursing children. This has been discussed on the board and there are different opinions here, but see what you can find in the medical community first. I had a great doctor in Virginia (internationally known), and trusted his opinion.

the American Thyroid Association website http://www.thyroid.org/ is a good place to start, and the http://thyroid.about.com/ page has a lot of other and alternative resources. This is from that site:
"Can I breastfeed while taking antithyroid drugs like Methimazole, Tapazole, or PTU, as a treatment for hyperthyroidism / Graves' Disease?

Methimazole (Tapazole) may cause thyroid suppression and goiter in nursing infants. Most doctors would advise that this drug not be used, or if it were required, careful monitoring of the breastfeeding infant's thyroid function would be needed, at intervals of every three months, at minimum, while the mother is on antithyroid drugs. According to the RxList drug information database online, "postpartum patients receiving Tapazole should not nurse their babies." (Reference.)

Whether or not a nursing mother with Graves' Disease or hyperthyroidism should take the antithyroid drug propylthiouracil (PTU) is controversial. Some doctors believe that PTU use by a nursing mother, with regular monitoring of the infant's thyroid function, is safe. They recommend careful monitoring of the breastfeeding infant's thyroid function every three months while the mother is on antithyroid drugs, but because low amounts of PTU cross into the milk, they feel that it is safe for the infant.

Breastfeeding educators believe that mothers should continue to breastfeed, believing that women should continue breastfeeding, have their babies regular monitored. Their argument is that the benefits of breastfeeding outweigh taking breast milk with a little PTU, as long as you can monitor the baby's levels.

A July, 2000 study in the journal Pediatrics, however, found that more than one-third of pediatricians and endocrinologists still advise against breastfeeding for those mothers taking PTU, despite some current journal research claiming it is safe. (Read abstract of "Choice of Breastfeeding and Physicians' Advice: A Cohort Study of Women Receiving Propylthiouracil," Pediatrics. Vol. 106 No. 1 July 2000, pp. 27-30.)

Despite studies showing the safety, some doctors are not convinced that breastfeeding should be encouraged in women taking antithyroid drugs. They cite concerns over potential nonthyroid side effects of antithyroid drugs, for example, autoimmune disturbances. For example, autoimmune disorders such as lupus and arthritis can be a rare but serious complication of antithyroid drugs."

Please email me if you want to talk about it more. ([email protected])
My Graves' is the reason we're still only talking about TTC :(
Cate
ttc 03?

[chrissyhowie]

Granted I am no endocrinologist, but why not treat the hyperthyroidism using either PTU or Methimazole while breastfeeding for however long you wanted (you could set a goal of x number of months, and then even extend that if you reached it). You could then decide to have the radioactive iodine treatment at a later time for more definitive therapy.

I know that these days the radioactive iodine therapy is often the preferred course since it is a permanent and effective treatment, but perhaps the endocrinologist didn't understand how much continuing breastfeeding meant to you. Taking either PTU or Methimazole are both considered to be safe during breastfeeding as shown by several studies. You could always defer the more definitive therapy until later when you are ready. I would definitely discuss that possibility with your endocrinologist. Since you are not feeling ready and there are perfectly good alternate courses of action, you should not feel forced to make a choice you aren't comfortable with.

HTH,

[LucyG]

Shannon,

As a physician, what do you know about the recovery time after the thyroidectomy procedure? The dr. kind of mentioned it in passing this morning, but it sounded like she thought the radioactive iodine was the treatment of choice. I realize it may be easier (swallow a pill v. surgery), but I am willing to have the surgery if it allows me to keep bf and keeps me from having to be away from my baby. I would think that, ultimately, it should be my decision, unless there are medical reasons that preclude surgery. I will talk to her about it. I am not usually a "go against the flow" person, but I think I'm going to have to be in this case. Do you think I'm being unreasonable to want surgery over the RAI? What would you do?

ps - So glad things are going better for you and Jack. He is a doll!

[LucyG]

Cate,

Thanks for your response! She's pretty sure it's Graves' rather than PP thyroiditis, because my mom has Graves, and my thyroid is slightly enlarged. I guess if the levels are not better after a month, that, too, might point to Graves'. She did not want to do a scan, for which I was thankful. My family dr. did, and that's when I requested a referral to an endo.

I hope you'll be able to TTC soon. Are you waiting because of having had the radioactive iodine? The endo. said I could try drugs for 18 months, but that RAI is often still needed after that. Since we hope to have a second baby in a couple of years, I'd want to get the radioactivity out of my system sooner than later (if I have to go that route).

As for the PTU and bf, this particular endo. does not encourage mixing the two, but I know that many doctors prescribe it to bf patients. If I could just nurse for a year (taking PTU during that time if needed) I would be willing to wean at that point . . .

Were you given the option of surgery?

[LucyG]

Chrissy,

This particular dr. does not recommend taking PTU while bf. I know, though, that many doctors think it's very safe. It may be that I have to get a second opinion. If I could nurse for a year, I would be willing to do something more permanent at that point. I'm very conflicted about it right now, trying to balance information and decide whether I want to try the drugs while bf. Thank you for your response!

[sntm]

I can't give you much first-hand information, as I keep missing this rotation and have never worked with the surgeon here who does them all. To my knowledge, though, it is pretty easy to recover from it. He rarely has inpatients and they are usually his parathyroid resections (you have to monitor them more closely.)

I'll try to do a little research and find out about it, but I definitely think it would be worthwhile at least to see a surgeon to discuss it, even if you decide against it. HTH! (and thanks! I think he's a doll, myself!)

shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[LucyG]

Shannon,

Thanks so much! I'll be interested in any information you find. You can email me at [email protected] if you find anything.

What do you know about the safety of propylthiouracil with breastfeeding?

[Rachels]

I just wanted to offer some support. This sounds wrenching for you. I know I would be devastated to be in your position. You're clearly such a committed parent. Whatever you decide, your baby is lucky to have you. Hang in there and feel free to email if you need a shoulder.

-Rachel
Mom to Abigail Rose
5/18/02

[josephsmom]

Lucy, I'm sorry you're going through this. My heart goes out to you with the thought of not being able to care for your baby the way you want to. I'm really hoping that, at the end of the month's waiting period, you learn that everything is OK and you won't need this treatment. Even if not, please remember that 6 months of breastfeeding is a wonderful gift that not many babies receive. You are doing an excellent job, and will continue to do so even if you have to wean sooner than you would like. I also wanted to suggest a couple of resources. I had a bout of thyroiditis a few years ago, and the book "The Thyroid Sourcebook" was very helpful to me. I got it at Barnes & Noble. Also, it might be useful to look into some weaning resources to make it easier on yourself if that's the route you need to go. One book that I know of is called "The Breastfeeding Mother's Guide to Weaning." That might not be the exact title, but it's close. With respect to moral support, you might want to check with a LC or LLL member in your area. I'm sure there must be other women who've had to wean before they're ready. If there aren't actual support groups, maybe they could put you in touch with an individual who can help. Or feel free to contact me personally to talk about this more. Good luck to you; I'll be thinking of you.

Helene
mommy to Joseph 12/29/01

[COElizabeth]

I am so, so sorry you are having to go through all this waiting and anguish and dealing with conflicting advice.

I am not a doctor, but I agree with Chrissy that perhaps your doctor doesn't understand how important nursing is to you and also, as importantly, I think, how difficult it would be to be four feet away from your baby for a week. That would be incredibly hard and I agree would be worse than just sending her to your parents' home (or to another trusted person) for a week. I think I would want more opinions about whether it would be safe to wait several more months before having the treatment so you could nurse longer and also work up to leaving your baby for a while. Even if you and your doctors decide to go with the radioactive treatment now, though, I am confident that your baby will be just fine and will flourish. She will always be a lucky girl to have such a caring mom. It's you that it will be hardest on. Please know that we empathize with what a tough and heart-breaking situation you are in and that we will all try to support you as much as we can. I hope things work out better than you're expecting now. Please keep us posted.

Elizabeth
Mom to James
9-20-02

[nigele]

Oh, Lucy. I am heartbroken for you. Your situation sounds so sad and I can understand why you are so upset. I hope for the best for you and please know that you are a wonderful Mom even if you have to give up bf. Your baby needs a healthy Mom more than she needs breast milk! BTW, five months is awesome and you should be very proud of yourself for getting that far.

[mom2huskies]

Thanks for the encouragement- my doctor said 6 months post treatment was long enough to wait, but I wanted to be extra sure, and get my replacement levels under control. We were also in the process of moving across country with new jobs and a new house, so we got a little delayed.

Almost everyone becomes hypothyroid after the RAI treatment (makes sense!) so do a little reading up on the problems with that before going forward. It won't affect your choices, but it's good to be prepared. I think, if you're going to get an autoimmune disease, this is the one to go with ;)

Surgery was never suggested as an option- I'm always nervous about anesthetics (previous nasty experience) plus there's lots of important stuff in that area :) so I didn't ask.

Not to scare you, but you might want to discuss the recommended time apart from you little one with your doctor, and whether you want to limit contact at first - like cosleeping. My DH is a scientist, his lab has a radiation counter, and that sucker was humming for a long time after my treatment.

Cate
ttc 03?

[LucyG]

Thank you all so much for your kind words and support. You have no idea how much it means to me. Even though my DH is very supportive, he cannot fully grasp how important the breastfeeding is to me. You all have been so great!

I have a new idea today, and I wonder if anyone can give me info. on this. I talked to my pharmacist to find out how long PTU (the anti-thyroid med) stays in the bloodstream. She said it peaks one hour after you take it, so I'm wondering if I could take the medicine after I nurse DD for the last time at night (around 8:00 pm), then pump and discard a few hours later. I'd even be willing to get up and pump in the middle of the night and discard that, if need be. The LC I talked to said that 12 hours is the usual time for most drugs to clear the system. If I pump and discard 6-12 hours after taking the PTU, it seems that most of it would be gone before the baby nurses again in the morning. If she needed to eat during the night, DH (or I) could give her EBM. We have a ton of that in the freezer. The pharmacist also said that PTU is usually taken once a day. Surely this would be a good argument to present to my endocrinologist. If the baby is getting the tiniest amount of the drug possible, surely that is the best we can do.

Do any of you have experiences with timing medication so as to have as little of it as possible in breastmilk? Dr. Sears talks about this in "The Baby Book."

Thanks again!

[alkagift]

I wish I could help you about this, but just wanted to send my support. I've been hyperthyroid since 1995 but have been without symptoms for nearly two years. I was on Tapazole for 5 years and essentially my thyroid just atrophied from lack of use.

The medication, as I understood it when I took Tapazole, may be out of your bloodstream but it effects your thyroid long after--the point is to suppress your thyroid in a sort of continuous way, no ups and downs. So, I'm not sure how safe it would be to BF, even past the hour or more from your taking the pill. That's definitely the endo's call, and I would get a second opinion to make sure--you don't want to mess with the baby's thyroid, it controls all kinds of weird stuff. In my experience, different MD's have different ideas about how to handle hyper thyroid. One endo I spoke with wanted me to have the surgery/radioactive iodine deal within 3 months if there was no change, while another wanted to go with the Tapazole therapy long term (it was a therapy found to have success in Japan). I know you can't take the Tapazole, but my point is that perhaps you can get another endo's opinion.

If you could put the whole thing off, I would, but don't go too long, it can make you really feel bad, and your baby needs you to feel strong! When I was finally diagnosed I weighed 115 pounds (at 5'8", not good), I had a resting heart rate of 120, and walking around the house made me tired--and my case was pretty mild. I really feel for you about the radioactive iodine, that would be awful to be away from your baby that long. You have all my good vibes and hugs!

Allison
Mom to Matthew Clayton, 5/19/03

[COElizabeth]

When I was facing the possibility of taking a medication, I was looking at doing something like this - taking it right after the last nursing session of the day and then feeding pumped milk if DS woke up within a few hours. I think I mentioned pharmacologist Dr. Thomas Hale's book in a reply to your earlier post. If you haven't had a chance to check it or have someone do it for you, I would recommend it. The hospital-based lactation program I consulted told me that his work has been an invaluable resource for them and really the first good information they have had on how much meds get into milk, how long they stay, etc. His book has tons of statistics in addition to the time to peak concentration your pharmacist looked up. Half life is one. If you know the half-life, you know how long it takes for 50% of the drug to clear your system. 75% is gone in two half-lives, and so on. If the drug has a short half-life, your idea seems very workable. ESPECIALLY since if I remember, the drug you are considering is already on the AAP list of drugs considered compatible with nursing. If you could combine those two factors (approved by AAP and minimizing the amount getting into the milk DD gets), that sounds very reasonable and cautious to me.

I actually ordered Dr. Hale's book at our library (they had to special order it for me) but haven't yet gotten to read it closely myself, since it took a while to come in and by then my doctor was recommending just monitoring me for a while, and I didn't need the drug right away. I had another check today and things are still good, so I am not facing that immediate concern thankfully, but I can try to get the book and do some reading for you if you like.

Another thing to consider is your baby's age. My baby was about 6 months when I called the LC with this question, and she seemed far less concerned since my baby was getting older than she would have been if he had been a newborn. I guess that has to do with the amount of drugs the baby getting being less and less relative to their body weight, plus the baby's system getting more mature and able to tolerate more.

Also, I am not 100% sure about this, but I believe that the pumping and dumping may not be necessary. I think the amount that is in your milk depends on the level in your plasma at the time you actually nurse, so you may not have to get up and pump in the middle of the night unless you need to do so for comfort.

Again, I really hope things work out well for you!

Elizabeth
Mom to James
9-20-02

[LucyG]

Elizabeth,

I called two LC's, and both are faxing me portions of Dr. Hale's book. They, too, said he is the authority on breastfeeding pharmacology. Our library here is really the pits; otherwise I would check the book out!

I think it's also in my favor that DD is 5.5 months old, so will be having other sources of nutrition, along with breastmilk. In addition, her system is more mature than that of a newborn.

Everything I am reading and hearing convinces me that the PTU is safe, particularly if I time it and have DD monitored by the ped. If this endo will not at least consider prescribing it, I think I will seek a second opinion. There is too much evidence that points to the safety of PTU and bf for me to just take her word for it and wean now. Thanks for your help!

[COElizabeth]

Great! I'm so glad you are getting information that is helpful to you. Please keep us posted and let us know how you are doing and how it all works out!

Elizabeth
Mom to James
9-20-02

[newbelly2002]

Shannon,

If you read this, drop me an email. I'm going to be in C'ville the third week in September and would love to meet up if you're interested.

Paula, Mama to Dante
http://www.shutterfly.com/osi.jsp?i=67b0de21b32384e84594 -6/25 update

[newbelly2002]

Good luck--I hope things work out for you with the medecine. It's amazing what a balancing act BF moms need to walk between their own health and the health of their babies. You've already done it once (with the gallbladder surgery, right?) and I'm so impressed that you're doing it again.

Much luck and big hugs,

Paula, Mama to Dante
http://www.shutterfly.com/osi.jsp?i=67b0de21b32384e84594 -6/25 update

[missym]

Hi Lucy,

Everyone has given you such good advice/feedback, but I just wanted to say that I know exactly how you feel. I've just been diagnosed with a medical condition which will likely prevent me from continuing to breastfeed, and will require some time in the hospital. I agree that it will be hard, and it breaks my heart that I might not be able to continue such a special interaction, but what I keep thinking is, the most important thing is that I am there for my daughter throughout her life. Helping her pick her wedding dress and being there when her children are born is more important than breastfeeding.

I'm sorry you're having to go through this. Feel free to email me if you need to talk to someone in a similar situation.

Missy, mom to Gwen 03/03

[LucyG]

Missy,

Thanks so much for sharing! It helps to know that others go through this, and that I'm not alone in my feelings. I hope that your health will be ok. Aren't things so much scarier (our own health, etc.) now that we have babies? Not much time to post now, but thank you for your kind words.