Sunday, May 13, 2012

Grave's Disease

Last week the doctor called to confirm that my scan showed that I have Grave's Disease- before I go on please know that this is treatable and even perhaps curable.  I am writing this post because I am seeking out guidance.  There are basically 3 methods of treatment. The first one is surgery to remove my thyroid. At this point that is really not an option. The second is Radioactive Iodine Therapy, otherwise known as radiation, which will kill my thyroid and cure me of Grave's but will bring about hypothyroidism. The third option, is to be on the medication Propylthyouracil for the rest of my life or until Grave's mysteriously disappears, if it so chooses.  I am really not sure about which of the latter two I want to do.  The radiation will require me to be in isolation until my body stops emitting Iodine- this usually takes about 7 days. I then will be tested every couple of weeks-once a month to monitor my TSH and T4 levels until I reach a state of hypothyroidism. In addition to the seven days of isolation, which in and of itself seems almost unbearable for me, I have to wait six months before I can try for a baby and could possibly be infertile for a year.  The radiation seems like it is a "quick fix" but is it really? I will still be medicine dependent because I will have to be treated for hypothyroidism instead of Grave's and hyperthyroidism.  Moving on to Propylthiouracil and my concerns with that. My doctor told me that this medication is safe during the initial stages of pregnancy. Not sure what this means exactly? I have read that it is "safe" during the first trimester and then often you have to switch to a different medicine during the 2nd and 3rd trimesters. I also have read that is is transferred through the placenta.  The medication also has other risks just like all medications do. Now I am sure after reading this you are all thinking hello Megan do the radiation, but I have had doctors tell me to avoid it. Not just my doctor but doctors my mom has talked to on her flights- one doctor actually has Grave's Disease herself. I am just hoping that someone will read this who has been in my shoes and be able to offer some advice. I am looking to hear from someone who is still in their child bearing years  or who dealt with this disease during their child bearing years and either has taken the medication while pregnant or has done the radiation before getting pregnant.  I need help! Please know that this isn't all because I want a baby. I would rather have no more children if it is too risky to have a baby with Grave's disease. I have a child and a husband to think about here and now. That is my concern. But there are so many factors that go into choosing between the medicine and the radiation. I feel at a loss as to what to choose.  Praying for help!!!!

4 comments:

Wonder Woman. said...

Hi. I'm Jeanette, April Jueschke's cousin. I have Graves' disease. I have had it since I was the tender age of 7 years. As a young kid I had no idea what was happening. Things started very late for me. Puberty, menstrual cycle. When I was 13 my doctor told me he wanted to kill of my thyroid when I was 25. I have taken Tapezole since I was first diagnosed and now I am virtually in a normal state. The safest way is to try and kill it off naturally with the medication. Radiation has some serious side effects afterwards. It would be safer to get it as a last resort or when things get serious. I recommend taking the medication and seeing how it goes. Especially since your thyroid is in such a critical time in the disease. Hope that helped.

Kris and Megan said...

Megan, I have zero advice about this, but just wanted to tell you I'm so sorry you have to go through this. I will keep you in my prayers. I know you will figure out the right thing to do! Are you at least relieved to know what's going on and hopefully be able to treat it and get on the right track for a baby?? Hopefully that has made a difference to at least have some answers. Stay strong :)

Heidi Broberg said...

Wow...you have been through the ringer lately. I don't have any advice, but just wanted to say sorry for all you are going through. Prayers coming your way (still)...

Christy (CPJ) said...

Hello - I was in your shoes a few years ago and started a blog, www.lifewithgraves.com, about my experiences. I chose RAI and am now pregnant with our first child (approx. 2 years after the radiation is when we conceived). If you do go the RAI route you will have to wait at least a year to get pregnant. If you do the meds the disease can recur and I saw them as more of a temporary fix. If you are wanting to try to conceive soon and are not afraid of the possibility of vocal injury, surgery might be your best option. Good luck and feel free to browse my blog for more info - I have several posts about weighing these three options and why I chose RAI. Please know that this is not a death sentence and although incurable it is certainly manageable with the right medical care. Let me know if I can be of more help - bless you! Christy