[Ski]

#1064099

Hi Pinky,

You can find a lot of your answers by searching the BB, we’ve had several discussions similar to yours, so you may want to do a quick search for "pregnancy" and you’ll find a LOT of detailed information from those who have been in your position.

I think the comment your doctor made about Graves’ is kind of lost in semantics ~ *most* people consider "Graves" to be the eye disease, the bulging eyes, but in fact that is a related, but separate condition that is more commonly referred to now as "Thyroid Eye Disease," since it occurs in people with other thyroid conditions, and not Graves’.

Graves’ Disease, as WE refer to it, is the thyroid disease, which sounds like that’s what the doctor has diagnosed.

So he’s saying he has diagnosed you as having the thyroid disease, but not the eye disease. I THINK. Check with your doctor to be absolutely certain.

The second thing I need to tell you is that *you* are the patient, and *you* get to make your treatment decision. Your doctor’s opinion is valuable, and good to know, but he is not "the boss of you," and you can weigh the options for yourself and decide what treatment route you want to go down, considering everything you’re going through right now. See a pediatric endocrinologist, talk with an ob/gyn that specializes in high risk pregnancies, and gather all the information you can before you make a decision, but it is important that YOU make the decision.

Many doctors decide what they would do if they were faced with your circumstances, and presume you would do the same thing. That’s not necessarily so, and it’s important for you to have a doctor that is a team member, not an authority figure who "balks" when challenged. If that means you need to change doctors, so be it. It’s worth it.

RAI requires a six-month waiting period after treatment before attempting conception to ensure that any maturing eggs that may have been affected (some of the RAI passes out of your body through the bladder, which is near the ovaries) are out of your system prior to attempting pregnancy. More importantly, you need to be HEALTHY before attempting pregnancy, which may take longer than the six months, and you should know that.

Surgery is definitely an option for someone in your position ~ at least you can say for a certainty WHEN your thyroid is no longer functioning, and you don’t need to worry about the potential RAI effects ~ but it still may be six months (or more) before your levels are normal, and stable, and you are "go" for pregnancy.

We can’t interpret your blood tests, FYI ~ the best thing to do is get copies of them all for yourself, and keep track of whether they are in or out of the normal range. In addition to that, keeping a symptom diary may help you locate YOUR normal point, once you’re at that phase of treatment. Since you want to get there quickly, you’ll want to have a very good handle on how you feel.

ALL things Graves’ take time, so keep that in mind. Even if you lost your thyroid this afternoon, you’d have up to six weeks just flushing out the excess thyroid hormone that’s in your bloodstream right now. Once you begin thyroid hormone replacement, it takes at least six weeks to build up in your bloodstream so that you can get accurate test results. Just letting you know that it’s a long road you’ll be travelling, but we’ll be here with you, and we’ve been through it, so I’m glad you found us!!

[pinky35]

#1064100

Thank you so much for your thorough reply! I am going to do the search now–just getting a feel for this board and didn’t even realize there was a search function. I appreciate the input, and the reminder to think for myself. I think I’ve always just listened to the "experts" (the doctor) and did what I was told in health care, so it is so good for me to keep that in mind. I’m hoping I’ll learn more just from reading some other posts on here. Thanks!

[snelsen]

#1064101

HI, welcome to the board. It does sound like you have an endo who is doing the right things, gathering appropriate. Following Ski’s recommendations, you will be golden. Definitely it is your decision, you will need to be treated, and Ski summarized that.
There definitely is a longer waiting period with RAI. I was 24, had just had a baby who was about 8 months old when I had my thyroidectomy. I was ready to get pregnant again, with the surgery, I basically recovered from it, was fortunate to end up in a euthyroid state, and got pregnant soon after. In your situation, you should consider the waiting period with RAI, which is considerably longer, and that may tip your decision toward surgery. A pediatric endo and high risk ob are definitely good ideas.
After you read a few posts, you will realize that there are a lot of women in your situation. THe time factor is a real consideration.
It is a really good feeling to weigh the options for treatment and make your personal choice. THere are several people on the site who have had the surgery very recently, so you might like to read their posts, too. You will probably find most of them if you plug in the word surgery. My experience was great, happy with my choice.
Shirley

[pinky35]

#1018336

Hi- I am hoping I can make this post make sense and be clear with my questions. I was recently diagnosed with hyperthyroidism after I had 2 miscarriages in 5 months. My endo diagnosed it as toxic goider, and said basically it is an autoimmune disease in the same family as Grave’s, but that I don’t have eye involvement, so it’s not Grave’s (that part confused me- I thought it was possible to have Grave’s withotu the opthamology part).

My labs are as follows:
tsh- less then .006 (low) free t4- 4.4 (high) thyroxine- 12.1 (high) t3- 226 (high)

thyroid stim immunoglobulin- 307 (high)
thyroglobulin antiboties- 45 (high)
thyroid peroxidase antibodies – 362 (high)
4 hour uptake- 24% 24 hour uptake- 53%

I guess i’m confused how it’s not Grave’s, if the antibodies are high.

The second part of my question has to do with treatment. Keep in mind that I am 35 years old and would like to try to conceive as soon as possible, while still being safe about it. I know I need to get things fixed before we try again. My endo is adamently opposed to the antithyroid meds during pregnancy (although he has stated that he tends to be more careful with pregnancies then some). Anyway, he recommends a permanent solution before trying to conceive- and his ultimate rec is for RAI. I would do the RAI and then be able to try for pregnancy again in 6 months (and see a fertility specialist in the meatime for additional work up due to age and the 2 losses).

I am just confused and feeling like time is not on my side, due to age. Just looking for thoughts/opinions.
Thank you in advance.

[pinky35]

#1064102

Thank you Shirley. You give me a lot to think about. I’ll be honest, I hadn’t given surgery much thought, but only because my endo felt RAI was better. The more I read- I have more things I wonder now. I have heard people have needed another RAI some time after the 1st- if that were the case it would push things off further (as far as trying to conceive). My endo gave me a couple of names of reproductive endocrinologists, and I called today but didn’t only left messages. I’m thinking now maybe I should try harder to see one of them first and get their take things. The other two ideas aren’t bad either.
Thank you- I searched surgery posts a bit earlier today and will probably do some more.

[lhc11]

#1064103

Dear Pinky,

First, I am so very sorry to hear about your losses. I had a miscarriage myself last September and know how hard it is. I was diagnosed with GD the following (that is, this past) spring, and what no one knows is whether the pregnancy activated the disease or whether the disease caused the miscarriage–but for sure, I was never going to be able to conceive while hyperthyroid. I am someone who opted for surgery for a variety of personal reasons, and if you’ve done the word-searching on this site you have probably already found my May postings about my agonizing over the treatment choices and finally reaching a decision. I would stress that yes, *you* are the patient and the choice of treatment is yours, but you might want to find out if your doctor is pushing towards RAI because there isn’t a good endocrine surgeon where you live, or because it’s simply what "most" people do to treat their Graves in this country. (For what it’s worth, my thyroid surgeon said they are seeing an increasing number of women of child-bearing age choose surgery, but then again the university hospital to which I have access has one of the most highly rated endocrine units in the country–I was very lucky). Like Shirley, I have no regrets about my decision to have surgery. In my case (and this should not be taken as any kind of prognosis for anyone else), my levels were in just-outside-of-normal range a month after surgery (actually, the FT4 was normal and the TSH was a little low, but not terribly so, we were given the go-ahead to try conceiving), and in normal range in two months–I did yoga throughout the time of being ill and went back to running when my levels were normal, so I was pretty healthy even before going into surgery. I have lately been seeing a reproductive endocrinologist to work on getting pregnant (though I am doing that *not* because I have Graves, but because my husband and I do not live in the same place, which makes everything–especially at the age of 39–a bit more challenging, to say the least; I’ve also gotten linked up with a high-risk ob-gyn just to cover all the bases). For me–and I’m repeating myself from earlier postings–I wanted to try to speed up the time to when I could try again, and I also wanted to not blame myself if I had another miscarriage (always a sad possibility) with thinking that it had happened because I didn’t wait long enough after RAI (doctors used to say a year, now it’s 6 months, and that discrepancy alone suggested to me that maybe no one really quite knows how long is long enough, and I knew that at exactly 6 months I’d want to start trying again, and then if something went wrong….I’d blame myself and wonder if it was the RAI…etc. As I said above, my decision was a highly personal one keyed to what I know of my psyche!).

Trust me, I know just how saddening and frustrating it is to have to put off trying to have a child when you’re in your mid (or in my case, late) thirties. But it definitely is so important to get healthy first, whichever way you choose to go.

Best,
lhc11

[pinky35]

#1064104

Hi lch11! Thank you for the response. So sorry for your loss as well. I have a 2 year old son, and I suppose I completely took for granted how easy it was to get and stay pregnant with him! I have my suspicions that this did start back then as I had a visible goiter post-pregnancy. Quite honestly speaking, I had gained a bunch of weight with pregnancy and I thought it was just fat on my neck! Now that I know I do have enlarged thyroid, I really think that’s what it’s been all this time. Anyway, it’s been an emotional rollarcoaster lately–I was certainly heartbroken when at 10 weeks, I found out I was having a miscarriage, followed by d&c. Then to have it all happen again a few months later, and now this diagnosis—it’s all been a bit much to say the least.
I finally found your posts- the search function didn’t work for me to find it so I scrolled back to May to read. I’m glad to hear everything has gone well so far for you. I am so glad I found this board, it’s helping me realize I need to not rush into anything and need to weigh each option carefully. I think the amount of nervousness I have regarding RAI is making things difficult for me right now. I just want to know in the end that I am doing the right thing for me AND for future pregnancy/child.
Thanks again!

[lhc11]

#1064105

Hi Pinky — I too had a (missed) miscarriage at 10 weeks followed the next day by a d&c, so I do know exactly what you’re talking about, and I’m terribly sorry that you went through it twice! As for posts–you should also be able to search for them using someone’s username, so in my case: lhc11.

All best to you,
lhc11

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