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Hi Amy,
I tolerated both ATDs that I was on very well. I had some joint aches when I went breifly hypo early in my treatment with the methimazole but we lowered my dose and that went away within a weekish. I did develop hives at the same time as I conceived with our 2nd child. We don’t know if it was the methimazole or the pregnancy that triggered them but that was when I switched to PTU. I suspect it was really the pregnancy but we will probably never know. I had been on the methimazole for many months without issue. I was also fine with the PTU. I had normal 1st trimester issues (fatigue & morning sickness) but nothing out of the ordinary that would have made me concerned that I was having any issues with the PTU.
The vast majority of people who take the ATD’s do not have any problems with them. Usually, the people you see on this board who are the few that are having diffuculties. Most get better and get busy with their lives again and you don’t see posts from them. I myself hadn’t been back to the board for nearly 2 years and only posted as a New Year’s resolution to provide a postive update story.
Laurel
Hi Amymarie84,
I started taking Methimazole 8 months postpartum and then switched to PTU when I became pregnant with my 2nd baby. I took PTU for 2 months total and was able to taper off. I have been off ATDs since about 2/06 and still in remission. I was very happy that my endo steered my the ATD route. I was very relieved to just have a diagnosis. In hindsight, I’d been sick for several months but had chalked it up to normal postpartum issues until it was impossible not to think something was truely wrong. I was also started on a betablocker which I was able to taper off of after only a few weeks. The betablocker really helped take the edge off the emotional symptoms within a few days. It took me about a year to feel totally normal but I was feeling much better after just a couple of months on the ATD.
I have had a return to health and I have two happy and healthy children. My two year old is fast. I am just happy I am able to keep up with her. With treatment, you will begin to feel better. You didn’t say if you were nursing. I remember being totally freaked out about nursing while on a medication. My endo was supportive of the nursing and we were given an OK by a pediatric endocrinologist who in an abundance of caution only recommended that my baby’s thyroid levels be checked every 8 weeks. Her levels were always fine.
I know it is scary right now but with treatment, it will get better. Not treating can be dangerous and you need to get yourself as healthy as possible to take care of that little one. It is also OK to make sure that your doctor has fully answered all your questions to your satisfaction. We have a few options with our treatment plan and you have the right to choose whatever feels best to you (assuming no medical contraints).
My other soap box is to ask for help right now so that you can rest and concentrate on getting better. It takes a full year for a body to fully recover after just a pregnancy and now you also have Grave’s to deal with. It is OK to ask friends & family for help with cooking, cleaning, shopping, and childcare (so that you can get a nap). Do NOT feel guilty about it.
Take Care,
Laurel
in reply to: Feeling awful #1073713Dear Hyperm,
I am so sorry you are going through this. I think that when Graves hits postpartum, it has its own special evil. It would be hard enough to deal with without being responsible for a new baby too. I was a first time mom when I got it. I felt like I was going crazy. I thought I had postpartum depression. I felt incredibly guilty for feeling the way I did. I was crying all the time, I felt constantly agitated/startled. I would yell at my husband (I had never yelled at him before and we had been together for 5 years). I had to stop working for several weeks. I had several physical symptoms too but the emotional toll was by far the worst.
With treatment, this will get better. It will take awhile to feel totally normal; you have a serious disease and you also just had a baby. Go easy on yourself and ask for help. Tell your family and friends what you need – get someone to help with childcare for both kids so you can get some rest. Have someone do your grocery shopping & house cleaning. Don’t feel guilty if you just need to rest on the couch. You may want to consider talking to your doctor about an antidepressant to help get you past this initial rough time. Many, many people on this board have needed them.
We are all worried and thinking about you. Let us know how you are doing.
Laurel
in reply to: Newly Diagnosed Today #1073760Hi Kathyb,
I went the ATD route and have been happy with that choice. I initially started on are higher dose for a few weeks and fairly rapidly went hypothyroid so we were able to drop down to a much smaller dose pretty quickly. I was on ATD’s for about 1.5 years and went into remission in Jan. 2006. I was also initally on a beta blocker for symptom control but was able to taper off that within the first couple of months.
I currently feel like my pre-Graves normal self and my thyroid is functioning normally. I continue to get my thyroid levels checked every 6 months because I understand that I can come out of remission at anytime and I may not be symptomatic enough to notice but would want to catch it early. If it does happen again, I think I would want to try the ATD’s again, at least initally because, they do start working to bring down thyroid levels right away. This would allow time to consider other treatment options without feeling rushed or pressured into anything. And, I would then consider all 3 options depending on my circumstances at the time. Right now in my life circumstances, I have two small children so I would be less inclined to do the RAI but I would still be willing to consider it. I would also look at sugery as an option.
Another thought I had about all of the choices is that no matter what you choose, you will still have to have lifetime monitoring of thyroid levels to ensure that you are either at the correct dose of ATD, still in remission, or on the correct dose of replacement thyroid (if you went the RAI or surgery route). They all have medical reasons why one might be selected over another which should also be taken into account. A very few people do not tolerate the ATDs, people with clotting disorders might need to avoid surgery, people who do RAI have to take precautions regarding being around people (esp. small children) for a few days, etc. There are many, many valid reasons for and against each choice.
I like still having options but I can also certainly understand why someone might just want to get treatment over and done with and onto just the replacement dose.
The other thing to remember is that all of the options take some time to dial into the correct doses and to be patient with recovery. It may take several weeks to begin to feel better regardless of what you choose.
I wish you a speedy road to recovery.
Laurel
in reply to: Is any of medications safe for breastfeeding? #1074057Hi MonicOH,
I was able to continue breastfeeding while taking Methimazole. I was 8 months postpartum when I started taking it. My endocrinologist supported my continued breastfeeding as did my family doctor (an associate professor at a leading medical school). She also consulted with the pediatric endocrinologists at the affiliated children’s hospital. They all gave the OK with the stipulation that my child have regular blood tests to check her thyroid levels – every 6 to 8 weeks. I was on a moderate sized dose. We continued to nurse for many months and her levels were consistantly normal. She is now a happy and healty 4 year old with a happy and healthy 2 year old sister.
I can really relate to your situation. Feel free to email me. I’ve been there.
Take care of yourself,
Laurel
in reply to: How can I be more supportive? #1074353Her school may also have some resources available. They may have a disability services office that could assist with accomodations. I became aware of this through a cousin who attended the same school as I did and needed accomodations for a different disease. The university I attended also had counseling services available on campus. Perhaps a reduced class load for a semester would be good; maybe taking only one class for a quarter/semester would help while she stabilizes or perhaps a leave of absense is possible if necessary.
in reply to: Antibodies after RAI? #1074374I think I forgot to mention that women who are considering getting pregnant should have their levels checked before, during, and after pregnancy (up to a year postpartum) regardless of their thyroid disease history. Having the right levels (not too high and not too low) of thyroid during pregnancy, especially during the 1st half of gestation, is critical to the developing the skeletal system, lungs, and brain. The levels of thyroid that you should have also changes over the course of a pregnancy and is another reason for close monitoring. My friend with hypothyroidism had to up her replacement dose for a time during her pregnancy. Ok, I’ll get off my off my soapbox. I have trouble remember I’m not everybody’s mother.
in reply to: Antibodies after RAI? #1074372With my second pregnancy, I had the same questions.
I was told that while higher TSI levels could indicate a higher risk of neonatal Graves (a very temporary and treatable condition – the baby does not actually have Grave’s disease in the traditional sense, but rather a temporary elevation of thyroid homone) it wasn’t good enough to say anything definitive. Regular fetal monitoring (checking for appropriate growth, no goiter, heartrate) were better indicators of any issues. We decided that since we would have to determine after birth anyway if it appeared that there were any issues that testing the TSI wasn’t something we would do. I can understand someone wanting to make a different decision or getting different advice from their doctor based on their situation.
They would also watch the baby closely after birth and for the first 3 months after birth or so, we wanted to be extra vigiliant for anything that seemed not quite right. For mothers with controlled thyroid levels (I was on PTU when I got pregnant and then tapered off 2 months into the pregnancy) there were very very very low risks to the baby.
Granted, there are very rare instances where there are issues but when I discussed my concerns with my Endo and my high-risk OB they were both very reassuring that they expected a normal pregnancy. I was referred to the high risk OB by my family doctor who delivered my firstborn. I had a shoulder dystocia delivery with my first who was an average sized baby so in combination with the GD they just wanted more of a specialist. The irony is that the Dr. did not make it back to the hospital in time for the actual delivery. The nurse did the catch and I don’t even remember pushing. We have all been healthy and happy since. My daughter is now 2.
The takeaway message here is that if your thyroid levels are well controlled and are being closely monitored by the appropriate people, you should be able to have a healthy pregnancy and birth. There are risks but the chance is minimal. My doctors were much more concerned about the ‘ususal’ issues that can happen with a pregnancy than with anything thyroid related.
If you have any questions about my experience I would be happy to answer what I can.
Laurel
in reply to: suffering post partum graves! #1074476Fergi,
I am so sorry you are going through this. Being a new Mom is stressful and tiring enough without having to cope with Grave’s as well. I recently posted my story of postpartum diagnosis. My daughter just turned 4, I have since had a second healthy pregnancy (2nd daughter now 2yrs old). We are all healthy and doing well.
At the time I was so, so, so very sick I also had to stop working. I felt like a failure at both my job and as a mother. I felt that I wasn’t doing anything well. After a couple of months of treatment, I could feel some improvement. I won’t sugar coat it. It took about a year until I felt mostly normal but it did get better. It is OK to concentrate on just taking care of yourself and your baby right now. It is OK to ask for help with running errands, shopping, housework, childcare (so you can get a nap). Your friends and family won’t know how to help (but I bet they would want to) unless you tell them specific things they can do to assist. Don’t feel weird if someone else is cleaning your house for you while you sit on the couch holding your baby. It really is OK. With treatment, you will slowly begin to feel better. I was able to go back to work after about 10 weeks. On the plus side, the extra time at home with my child was a gift that in hindsight I am very thankful for. Money and jobs can be replaced, time cannot.
One thing I was really freaked out about was being able to continue nursing. If this is a concern for you, talk to your doctors (both yours and your baby’s doctor). Depending on your particular circumstances, you may be able to select treatment that allows this. I was able to take ATDs and continue nursing. This is not possible for everyone. If you don’t have doctors that you are confident and comfortable with, keep looking. I attribute my steady recovery to knowing that I had good doctors who took into account what was important to me and supported my wishes when medically possible.
Another thing that helped me was to keep a Grave’s notebook. In it, I kept track of my lab results, noted Dr. appointments and contact information, wrote down questions that I had to ask the doctors, and took notes in it durning my appointments. My short term memory was shot and Iknew I would never remember all that stuff.
Please know that the vast majority of Grave’s patients get treated, after some time feel better, and get on with living their lives. I hadn’t been back to this bulletin board for a couple of years. I just recently posted an update to my story because I remember being scarred about reading all the posts from other people and wanted to share an encouraging story from someone farther down the treatment road.
Feel free to email me if you want to talk more. I wish you and your baby all the best.
Laurel
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