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Hi,
Sorry your wife and you are going through this. I know there is a significant amount of information that you both now need to absorb. Fortunately, once started on the ATDs, that will give you both time to consider your long term treatment options and goals especially considering your wish to start a family. Some points that you should think about over the next few weeks (and prior to pregnancy) are:
1) ATD treatment is recomended for a minimum of 18-24 months before seeing attempting to determine if the drugs can be stopped and remission (stable levels without medication) has been achieved. If your wife becomes pregnant while on Methimazole, she would likely be switched to PTU for the first trimester. There is some evidence that Methimazole is associated with some skin related birth defects so it is felt the PTU is safer for the first trimester. Rarely, hyperthyroidism can be difficult to treat during pregnancy. Too much thyroid can cause a miscarriage and too little can cause brain damage for the baby. If the hyperthyroidism is hard to control, this may require a thyroidectomy during the pregnancy which is not an ideal situation.
2)Many women do experience a remission of auto-immune disease during pregnancy and may be able to stop medication during the pregnancy. BUT, Graves’ often resurges in the 12 months post-partum. Treatment would again be needed. Being a new parent is not the ideal time to have to deal with Graves’ disease (not that any time is great). Being sick with a new baby is bad, bad, bad.
3) For a nursing mother, taking an ATD while nursing may be possible but is not without some concern and worry (new parents already have a lot to worry about.) Both Methimazole and PTU will cross into the breastmilk. Babies may need to have their thyroid levels checked via a heal stick periodically to determine that their thyroid levels are within the proper range. Doable, but not fun.
4) A nursing mother must stop breastfeeding if treated with RAI (and stay away from the baby for several days).
5) A nursing mother must temporarily stop nursing if she has a thyroidectomy (pump & dump) while the medications needed for the surgery clear her system. It may be possible to pump and store enough ahead of time but not always an easy thing to do.
6) Kimberly and Shirley already mentioned the question they had about the endo’s statement that RAI was faster. Additionally, for RAI, there is a recommendation to wait to conceive for a period of time. I’ve read anywhere from 3 to 12 months but something you should be aware of.
It may sound like I am discouraging pregnancy while on ATD but really, I am not. I was first diagnosed post-partum with our first baby whom I was nursing. My medical team all supported continued nursing as they felt the benefits far outweighed the risk of our baby getting too much ATD via breastmilk. Those heal stick appointments though were not fun for her or me. We also conceived our 2nd baby while on Methimazole and I did the switch to PTU for a few weeks and was able to stop for the rest of the pregnancy. In fact, I stayed in remission much to everyone’s suprise for about 6 years and we have two healthy and happy children who are doing well in school. I have now relapsed but am doing well again on an ATD. Yikes, I have written a book.
Best wishes and keep us posted.
Laurel
in reply to: How much Methimazole is ok when Breastfeeding? #1176637Hi,
My now 8 year old was about 8 months old when I was diagnosed. I was also nursing. I was started out at 30 mg of Methimazole and was able to taper down over about 3 months. I was totally freaked out about taking a medication while nursing. My endo wanted me to keep nursing. My baby’s doctor consulted with the pediatric endos at our regional children’s hospital and they were also supportive of continued nursing. We did do periodic checks of our baby’s thyroid levels and they were always fine. I was able to continue nursing for several months (until she lost interest). She is a very happy and healthy 8 year old and is doing well in school.
I was still on a small dose of Methimazole when I became pregnant with out 2nd and was switched to PTU for about a month (what I actually kept down :rolleyes:). I stayed in remission after our second was born for close to 6 years and just recently relasped but am doing well on ATD again.
I understand it is a really difficult time with a little one. I also would have noted that American Academy of Pediatrics statement that Adenture provided. I would also consider that the NP while I am sure skilled, is not a pediatrician or an endocrinologist and may not really be knowledgable about the issues with babies and breastfeeding. My own GP said to me when she first got my hyperthyroid test results back ‘I don’t do Grave’s. You need a specialist.’
Best wishes for you and your little one.
Laurel
in reply to: Merry Christmas #1176051Merry Christmas to you as well!
And best wishes for health and happiness to everyone in the the coming year.
Laurel
in reply to: Starting PTU today or tomorrow #1175846I hear you about the bitter taste. I toss it as far back as I can and drink lots of water to wash it down. It also makes my pee smelly (sulfer) tee hee.
I’m glad it seems to be working better for you and that is great news about your friend.
Best wishes,
Laurel
in reply to: Starting PTU today or tomorrow #1175836Hi Amy,
I have been OK so far with the PTU. I take it morning and night. When I first started, I was taking it at noon as well. Taking the MMI only once per day was nicer but the twice a day isn’t bad. I do have to set my cell phone alarm to remind me and I have one of those pill dispensers that you fill at the beginning of the week so I know at a glance if I took it or not. I have not noticed drowsiness but I have noticed occasional fatigue and hair loss but I am attibuting that more to the fact that while we seem to been getting closer to a matainence dose, we haven’t quite settled in on one yet.
Perhaps your GP/family doc could give you a recommendation/referral to a surgeon if you endo won’t. I feel pretty spoiled by mine. I recently saw her with my daughter (for an unrelated issue) and she asked how I was doing and noted that she always gets an update from my endo. I expressed that though I am doing mostly well, I am sometimes tired of it. She responded that she thought I was getting good care but that if I ever wanted another opinion, she would give me a referral. Needless to say, I’m a big fan of our Dr. and family medicine in general. I also really do like my endo. I think his preference is to give the ATDs a good trial to see if avoiding RAI or surgery is possible but I think he would also take my preferences into consideration. I can’t remember if I sent you his info before but if you want it, send me a PM. He is on the Eastside.
I am hoping for the best for your friend. You have a lot of stress to deal with right now.
Laurel
Hi Jen,
Wanting to try for a pregnancy soon is a complicating factor. You have already thought about some of the important issues such as what will get you ready the soonest and that you had a reaction to the PTU (the preferred 1st trimester ATD).
Something else to think about is postpartum. A common time for GD to flare is in the 12 months after giving birth. That is what happened to me after our first child. On was on Methimazole for several months until I became pregnant with out 2nd and was switched to PTU. Because I was nursing, they wanted to monitor our daughter’s thyroid levels which meant regular heal sticks. Everything was always fine and the big benefits of continued nursing outweighed the very, very small risk of too much of my medication affecting our daughter.
Oddly enough, the 2nd pregnancy put me in remission which unexpectedly lasted about 6 years. But, I was worried about relapsing again during the whole pregnancy and while I was nursing. I don’t recommend having a baby and being sick if it can be avoided. (There will be plenty of sleep deprivation from just the baby.) That first year after our first daughter was born was incredibly harder than it should have been. The mind fog and fatigue robbed us of time and memories that should have been savored and enjoyed. I feel very lucky that the second pregnancy and postpartum went so well.
Best wishes for this very difficult decision,
Laurel
in reply to: weird throat sensation #1175344I also notice a slight lump that I’m sure only I or my Dr would see. I occasionally feel it inside when I swallow and can’t stand to wear a turtleneck. Mine seems to go up and down but subtly. It’s more noticiable for whatever reason when I’m also congested.
Be very, very gentle when feeling your thyroid. Too much poking and prodding can rev it up. My Dr. always uses a feather light touch when physically examining mine.
Best wishes,
LaurelHi,
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
in reply to: New here with a dilemma #1174891Hi,
Sorry you are going through such a rough patch. Even if you want permanant removal, your endo might put you on an ATD (anti-thyroid drug) to bring your levels down prior to RAI or surgury. This is my 2nd bout with GD. I had a near 6 year remission. I was leaning toward a thyroidectomy last spring when I came out of remission but my endo said it would be safer to be stabilized at a normal level for a couple of months before we consider either proceedure. Just saw him again today and even though I have been in the normal range for a few months, we are opting to stay on the PTU for now. I’ve been happy with it. One thing to consider is that the ATD gives you time to consider your long term options while working to bring down your levels. I also noticed that once my levels are in the normal range, I CAN think more clearly and a great deal of the GD induced anxiety goes away.Best wishes for a speedy recovery!
Laurel
in reply to: Just diagnosed #1174272Hi Amy,
Sorry to see that you are struggling but I’m glad you have found this board. It has been tremendous source of comfort to me. This is my second bout after a 6 year remission. I see that you are unsure about your endo. I am also in the Puget Sound area but over on the Eastside. I have used the same endo for my past initial occurance and this current recurrance and have been very happy. I don’t know if he is taking any new patients but if by chance you would like a second opinion let me know and I’ll send you his info.
I hope you are feeling better soon!
Laurel
GD can really mess with so much more than just your physical state. Recovering from my first bout with GD (on ATDs) took about 3 months AT normal levels to start to notice that things were improving. It took about a year for me to feel totally well. I first went to my Dr. because I was 8 months postpartum and could not stop crying. I cried all the time at anything and everything – even driving to work by myself and sitting at my desk. Needless to say, I couldn’t concentrate at all. The odd thing was that I didn’t feel like I felt sad or depressed but I assumed that that it must be Postpartum Depression because I had no idea what else it could be. (My husband will tell you I was also rather cranky.) I chaulked up all the other symptoms as normal postpartum issues. My Dr. put me through the whole depression questionaire but thankfully she also picked up the tachychardia and had me do blood work. As I said, I did get well again. I had a healthy second pregnancy and baby and I enjoyed a several year remission. I recently relapsed but I think I caught it fairly quickly and am back on an ATD. I am already feeling much better.
It does get better.
Laurelin reply to: UPPER EYELID SURGERY TODAY #1174187Thinking of you and wishing you a speedy recovery!
Laurelin reply to: 3 months in -feeling good #1174141Thanks Shirley and Kimberly. I do feel pretty lucky to live in Washington!
Shirley – Good luck on your proceedure. Perhaps we could meet for coffee some morning after you recouperate and the kids are back in school. It is always nice to meet other GD patients.
Today I even cleaned the garage…woohoo!
Laurel
in reply to: Crazy Journey #1173181Wow! You have had to deal with a lot of disconcerting news. I have a friend who had thyroid cancer in her mid-twenties. I was going to say 10 years ago but then did the math and realized that we are now 40 so it has been 15 years. She had a very noticable lump (about the size of a nickle) when she was diagnosed. She ended up having a total surgical thyroidectomy which was followed by RAI to finish off any remaining tyroid tissue. She had a pretty rapid recovery and now takes replacement. She is doing very well, healthy and active. She also has a healthy preschooler and had no issues with her pregnancy. Do check out the ThyCA site that Kimberly suggested. My friend also found a lot of support at Gilda’s Club.
Keep us posted.
Laurel
in reply to: Crazy Journey #1173180Wow! You have had to deal with a lot of disconcerting news. I have a friend who had thyroid cancer in her mid-twenties. I was going to say 10 years ago but then did the math and realized that we are now 40 so it has been 15 years. She had a very noticable lump (about the size of a nickle) when she was diagnosed. She ended up having a total surgical thyroidectomy which was followed by RAI to finish off any remaining tyroid tissue. She had a pretty rapid recovery and now takes replacement. She is doing very well, healthy and active. She also has a healthy preschooler and had no issues with her pregnancy. Do check out the ThyCA site that Kimberly suggested. My friend also found a lot of support at Gilda’s Club.
Keep us posted.
Laurel
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