[koop82]

#1018907

Hi everyone, I was very glad to come across this site as I have no one to talk to that can relate. A few weeks ago I was rushed to a cardiac hospital with a heart rate of 240 beats a min. I had symptoms for a month before this but blew it off as nothing. After many tests and scans I was diagnosed with Grave’s. I am trying to cope with having a disease and knowing I will have to deal with it for the rest of my life. I am 27 and am having a hard time coping. The meds have helped most symptoms but I am unsure of the future. I wanted to know about having children and will I be able to have them. Will I have to wait until I have radio iodine or surgery to try or is it possible to have a healthy baby during treatment with medication. Also I have lost weight since this happened and will the methimazole make me gain or lose weight? What about if you become hypo, how does that affect your weight? I don’t have my appt with my endo until next month and I just thought I might see if I can get some answers in the meantime. Thanks for any responses.

[bradybunch6x1]

#1067774

Koop,
It usually isn’t this long until others are jumping in to reply, but most of the people are at the NGDF confrence. So I will do my best to help answer some of your questions. I can answer the ones about pregnancy, and a few others. Pregnancy is possiable during treatment of Graves(While on PTU, most doctors don’t recommend methimazole during pregnancy due to side effects on the fetus), but is not recommended until we obtain normal thyroid levels. When we are pregnant it is very important to have normal thyroid levels to maintain a pregnancy, as well as have a health happy baby. If you have RAI it is not recommended to become pregnant after the RAI right away(most say about a year), it will help you get your thyroid levels within range during that year. As for the surgery, not until you reach normal thyroid levels, which is usually less time than a year. As far as gaining weight, I am not sure about that, I can tell you what my doctor told me years ago. I was told I would not gain it back unless I started to go hypothyroid, which happened, but I know that this is not always the case. Some people actually start to gain weight while hyperthyroid, so I wouldn’t hold this as true for everyone. I have gained weight while being hypothyroid, but I can also say that not everyone does this. This disease isn’t always the same in everyone of us, and so it’s effects effect everyone differently.
I can understand the not knowing how to cope with this disease, as it is alot like trying to guess what will happen next. There is no for sure thing when it comes to this disease. You could be fine, and have no problems after all of this, or you could have a slew of problems. The one thing that I know is that you should start to educate yourself about the disease now, so that if your faced with any discisions down the road, you will know what to do, and were to turn. This is a great place to start. They have a list of recommeded books on this site that I think you may find helpful. Also I would like to tell you not to let all the talk about the horriable things this disease does worry you to much, as most of the people on any site about thyroid disease that are on there, have had, or do have a problem with the disease, or they wouldn’t be on there looking for answers. So the ones that are doing really well usually are the ones out there doing something else other than looking at thyroid disease groups(be mindful of that).
Good luck,
Valarie

[koop82]

#1067775

Valarie, I am so glad you responded, I was beginning to think no one would respond!! But you’re right most people are at the conference. After reading all the horrible things on here and other sites I have visited, I was really really feeling down. But it makes sense when you mentioned it is the people who are having difficulties that post or blog whereas the ones who are doing fine are not online talking about it. My first visit with my endo was such a blur to me.  You see I was on vacation in FL almost a month ago, jumped in the pool when my heart went "crazy" and was rushed to a cardiac hospital. They had to reset my heart in the ambulance and in the hospital run ultrasounds of my heart and thyroid, many blood tests, and I was in there for 4 days. The day I flew home I went right to the endo.  She seemed really great and caring. I rarely get sick even colds, so this was a major shock to me. I am taking propranolol and methimazole as well as aspirin for my blood and some anxiety medicine.  I am so curious to see how the meds are working.  Anyways it is so good to have a site like this where people can relate and share stories. I will definitely check out the book list, as I am really into researching things so I will be better informed. Thank you so much for responding and I will post other info as needed.
Christina

[Bobbi]

#1067776

One thing to keep in mind when you are reading our board, or others out there, koop. Most people who post to these boards are ill. Once folks regain their health (via whichever treatment option) they typically get back to the business of their lives and do not dwell on these boards day in and day out. If you go back through the archived posts from this bulletin board, you will see that the names change every three to six months; the stories remain exactly the same. So what you are seeing is not the whole picture.

This board is a little different inasmuch as we have a few moderators who have continued to try to help folks with information, even though we are no longer ill. We try to give things a little balance.

So, take heart: you can expect the treatments to return you to health.

Wishing you a good day,

[LaurelM]

#1067777

Hi,
I was 8 months postpartum when I was diagnosed and started methimazole. I was on it for about a year until I became pregnant with our 2nd (a bit ahead of our schedule) and was switched to PTU which I was on for about a month and was able to discontinue entirely. I have stayed in remission ever since. Our ‘baby’ is now a happy and healthy 3 year old. It is possible to have a healthy pregnancy on an ATD but I wouldn’t recommend it. It was very worrisome. Both methimazole and PTU are catagory D for pregnancy due to an elevated risk of birth defects. Pregnancy is hard enough without the added stress of concern that medication that you MUST have could harm your baby.

Another issue to consider is breastfeeding your baby. Both of these drugs will also pass through the breast milk. I was able to continue nursing our first but had to have her thyroid levels monitored via regular blood tests to ensure that she remained in normal levels. All the doctors (my endo, my PCP, my baby’s Dr), did agree that continued nursing was likely a very small risk and the benefits far outweighed the risks but still, another worry. The recommendation on breastfeeding may vary depend on the ATD dose and the age/weight of your baby.

While I luckily have remained in remission, the first year postpartum I was followed fairly closely as this is a common time for Graves to flare up due to the ramp up of the immune system postpartum.

The right level of thyroid hormone is critical to the development of babies. It is much easier to regulate replacement hormone than to trying to control excess thyroid during pregnancy.

I have a good friend who had thyroid cancer. She had surgical removal of her thyroid and a much higher dose of RAI than Graves patients receive. She is going to deliver a very healthy baby in a couple of weeks.

The ATDs worked well for me and I am glad that I went that route as I still have a functioning thyroid gland. They gave me time to learn about my options without making a permanent decision. At this time in my life , I would still consider all of the threatment options if I were to come out of remission. Right now I would likely try ATDs again. If that didn’t work, I might lean towards surgery as I have small children and might balk and the restrictions with it. If my kids were older, I’d be more OK with RAI. I think you really need to consider where you are in your life and pick your treatment based on what feels right to you.

Regardless of which treatment you ultimatley choose, be sure to tell your OB & your new baby’s doctor of your Graves history. Even if you have had RAI or surgical removal of tyour thyroid, there is a teesny weensy teeny tiny itty bitty risk of the auto-antibodies in your blood crossing the placenta and causing a temporary condition called neo-natal graves. It is just something they will want to know so thay cankeep a closer eye on the baby. This is a very very very rare occurence.

I would be happy to answer any questions you may have about my experience. I promise that whatever treatment your do choose, your sill start to feel better.

Laurel

[koop82]

#1067778

Thank you Bobbi and Laurel, it’s so nice to have people with encouragement and answers!!! I had a bad day today but coming to this site definitely helps me realize I am not alone.

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