[Anonymous]

#1018780

hello all,

I have been diagnosed with graves disease and they out me on methamezol first after about two weeks I developed hives all over and became short of breath my endo said I was allergic so he started me on PTU last night I had to go to the ER for my throat closing. my endo let e know that was an allergic reaction told me to stop and would call me monday for my treatment options which I am now left to RAI or surgery. my problem is I want to have a baby and would have to wait a year to try with RAI and I don’t know to many people that have had the surgery so I wanted some opinions and in site on how surgery was vs RAI.have to decide quickly as my symptoms are out of control

thank you
katy

[Ski]

#1067069

Hi Katy,

Sorry to hear you’ve had trouble with the ATDs ~ the decision between RAI and surgery is a very personal one, but in addition to that, your surgeon may not be willing to do surgery if you have been unable to control your levels beforehand. Hyperthyroidism can complicate surgical procedures and make them far more dangerous, and also physically handling the thyroid has the potential to allow further release of excess thyroid hormone. I believe there are "iodine drops" you can take in order to limit those particular complications, and there may be other routes to take to ensure your safety. If you want surgery, truly, you should be allowed to pursue that. It’s true that RAI can mean you need to wait a while before attempting pregnancy. The same can be said of thyroid surgery, since you do need to be stabilized (not just treated), but at least you skip the question of knowing when, exactly, your thyroid is essentially "gone," so from what I understand, you are likely to be stabilized more quickly after surgery. Still, it’s no guarantee, because the first rule of Graves’ is that it’s very individual, and we all travel a unique path from each other, so it’s impossible to say "you will be stabilized in XX months." The best thing you can do for yourself is to make sure you are talking with an experienced surgeon and that all of your thyroid issues are addressed completely prior to surgery.

[heather013079]

#1067070

Hi Katy,

I was diagnosed with Graves in early 2008. I took ATDs starting with PTU (had a serious reaction), and then switched to Methimazole which I’d been taking up until 2 weeks ago. I too was struggling with the RAI or surgery decision. I’ve done a lot of research on all treatment options, and agree it’s a very personal decision. For me, timing was important. We want to have another baby sooner vs. later, and so I decided to have surgery. There is a lot of pressure to go with RAI, it seems, as surgery is not as common in the US. My primary care doctor, my endo, and the thyroid surgeon questioned my decision a number of times; however, overall my endo has been extremely supportive and allowed me to make the final decision. I had surgery two weeks ago, and I feel great. The first couple days I had a sore throat and swallowing was hard, but I’m doing really well, and feeling great overall. I am taking calcium supplements, as one of my parathyroids suffered some injury, but I’m hoping it works itself out in the next few weeks. I will have a blood test in January, and if all is well, my endo thinks we should be able to get pregnant early next year.

Best of luck to you as you make this very important decision.

Heather

[hubb]

#1067071

Hi Katy: I am currently asking myself the same question: RAI or surgery- It is not an easy decision, so I can empathize with you. My situation is not as severe as yours; I am not allergic to the ATD’s, but I am too sensitive to them, i.e., the Methimazole was too strong and made me hypo so I switched to PTU, which made me more hypo (TSH a whopping 53). I cut back to 1 pill (rather than 2) and now I’m hyper again (TSH .009)- I can not take AtenoI either. I do not have awful symptoms at hper like many people, however when hypo I can not function (not to mention I put on the pounds), which is why I fear both RAI & surgery. Doc suggests I meet with the surgeon to gather some information, but for now, I have decided to do nothing. I am going to try to split the difference with the PTU and see if that works: 1 pill odd days, 2 pills even- It’s worth a shot- I have also destressed my life by cutting back on my workload- (quite challenging because I teach writing, which means I have oodles to grade!) I realize that you do not have options with the medication, but be sure you know the pros and cons of each procedure. Thus far my reading indicates that the risk with surgery is very low in itself- The risk goes up depending on the specific experience of the surgeon- So, if you opt for surgery, be sure your surgeon is adept to thyroid procedures-

[Bobbi]

#1067072

To hubb and Katy:

After RAI or surgery, we are only hypothyroid if we are not receiving an adequate dose of replacement hormone. It is common to think, "I’ll be hypothyroid for the rest of my life," but that is not true. Replacement hormone IS thyroid hormone (T4). It is chemically identical to thyroid hormone (T4). It works like naturally produced thyroid hormone. And it has no typical drug side effects issues other than those associated with getting either too much of it (we become hyperthyroid until we lower the dose) or getting too little of it (we fall into hypothyroid levels until raising the dose). Unlike the ATDs, when it is utilized in the body, there are no toxic by-products of it being metabolized: it is designed to be used by the body.

So put aside any fears of being hypothyroid for any length of time. Yes, after RAI many of us do go hypo, temporarily, while our levels are adjusting, and we’re testing out various doses of replacement hormone. And, that can be true after surgery as well. But once your dose is found, and you are stabilized on it, you are no longer hypothyroid. And the minor levels of hypo we may experience are significantly less of a health problem than being hyperthyroid is.

Looking on the bright side, Katy, methimazole and PTU have the potential to harm a baby if not very carefully monitored during pregnancy and during breast feeding. They have been used safely, but since they cross the placenta, and go into breast milk, the baby must be watched and sometimes have frequent blood tests. If you must do either RAI or surgery, you will be on a medication that does not have that potential. If you look at things that way, perhaps it will cheer you up a bit about having to choose RAI or surgery. I know having your choice taken away from you must seem like an additional burden to bear right now. But there truly are some advantages, too.

wishing you both good health soon,

[susandemarco]

#1067073

If you make the decision to have surgery rather than taking RAi, do you still pose the same risk of
getting eye problems or TED?

I am currently scheduled for RAI on January 8th, but I am thinking of speaking to my doctor again about
having the surgery. When I mentioned it before to her, she asked me why I would want to do that
when Icould just take a pill. But, the more I read about RAI on this board, it seems as though a lot of
other problems come along with it. I am so confused. I am also thinking about just staying on PTU
indefinitely, even though I know that they also have side effects.

Thanks for being so patient with me, but I am really confused.

Susan

[Ski]

#1067074

Unfortunately, there is no way to predict when or if we will end up with severe TED symptoms. The thyroid treatments do not affect your chances of getting TED. For the most part, people get their symptoms within a year of thyroid symptoms, but there are patients who have fallen outside those parameters, so there’s just no guarantee. The bottom line is that your decision of thyroid treatment doesn’t affect your chances of TED, but only a small percentage of patients end up with the very worst TED symptoms anyway.

You do need to be comfortable with your treatment choice, and all are valid, so just make sure you’ve done your research and you know all the details, then make sure you are keeping your thyroid hormone levels managed properly, and that way you can minimize other issues related to thyroid treatment.

[snelsen]

#1067075

Hi Katy, you got some excellent replies to your dilemma. I am sure your doc will tell you what ski referred to, that is,
you can’t be to toxic when you have a sub-total thyroidectomy. In 1959, I had "post partum thyroxicosis" after I had a baby. I was on PTU, several times. I decided on a subtotal thyroidectomy, recovered quickly. For 35 years, after the surgery, I was euthyroid (neither hyper or hypo) then began taking a little Synthroid. It was not until five decades later that I had Graves Eye Disease. With your reactions and allergies, I am hoping you and your docs can work out a safe answer for you, so you can move ahead and have that baby! Best wishes to you.

[Author]

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