[snowboo]

#1058767

Hi, ” title=”Smile” />

I had a bad bout of graves’ in 2005 and it took until around 2007 on 20mg tapazole and 80mg propanolol before I finally went into remission for about four years.This past July (2011), my bloods showed I was slightly hyperthyroid and my antibodies were at about 1/3 of the levels they were when I was in my worst shape ever (which was around 2006, after I started treatment last time).

I really would prefer not to get radiation and be hypo forever. Maybe it’s an irrational fear, but if the effects of the tapazole are any indication, I’d actually prefer to be slightly more hyperthyroid than this… I thought that because pregnancy does to weird things to the body sometimes, it might have a positive effect on my graves’, so I asked (bartered with) my doctor if we could do that first, before trying other treatments.

Now, he’s saying that it would be preferable to do RAI before having babies and so I’ve been researching my options to death lately, trying to figure out how RAI would affect babies since I do intend to have babies as soon as possible. From my perspective, there is no way that a treatment that carries with it a risk of leukemia and thyroid cancer has no effect on the ovaries. I just don’t see how that’s possible (some sites even seem to say that infertility is a possibility after RAI). And I don’t see why the thyroidectomy is so unfavorable in comparison here in North America (but apparently it’s the reverse in Europe).

If I wasn’t planning on having babies, I would probably do the RAI, but I just can’t see how the risk of infertility and other effects the radiation might have on my reproductive system make it a viable option at this stage in my life… Frankly, I’d rather lose my voice than damage my ovaries and my future babies’ health, even if online (mostly government) information seems to push that this particular form of radiation doesn’t adversely effect future children (which makes no sense if you think about it).

So, after all my research, I thought I’d suggest a partial thyroidectomy now, and then if I’m still having hyperthyroid issues post-babies, then go for the RAI.

Do you guys think this is a bad idea? Any ideas?

[Kimberly]

#1169853

Hello – You might do a search on this board for terms such as “pregnancy”, “conceive”, “babies”, etc. to read stories from other patients who have had to make a treatment decision while hoping to get pregnant in the near future. There are many women on this board who have had successful pregnancies after all three treatment options: Anti-Thyroid Drugs, RAI, and surgery.

If you do pursue ATDs again, keep in mind that PTU is the preferred drug during the first trimester of pregnancy, due to the increased risk of a couple of specific birth defects with Tapazole/Methimazole.

Subtotal thyroidectomy has fallen out of favor, due to the high rate of recurrence. The preference now is to do a total thyroidectomy. (“Near total” would be a better term, as doctors do leave a tiny bit of tissue to avoid damage to the vocal cords).

One of the larger studies on cancer & RAI involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. However, other smaller studies have noted a slightly increased risk of specific types of cancer following RAI. I’m not familiar with the leukemia study, but you might check to see if the study was done on patients who received treatment for hyperthyroidism vs. thyroid cancer. Thyroid cancer patients typically receive a much larger dose. However, this is definitely an area where you will want to do your own research before making a final decision.

Wishing you all the best!

[snowboo]

#1169854

Thanks for the wealth of information! I had searched, but I guess I didn’t go far back enough…

I’m on the antithyroid meds right now, but in January, I’m supposed to go off them to see if I end up hyper again and that’s when RAI is on the table (so I’m trying to get it off the table…).

I’ll go forage for more info. ” title=”Wink” />

[Bobbi]

#1169855

Another perspective, snowboo, about the "going hypothyroid for life," issue that you raised. The terms "hyperthyroid" and "hypothyroid" are technical definitions which relate to thyroid hormone levels. Hyperthyroid simply means that you have too much thyroid hormone in your body. Hypothyroid means you have too little thyroid hormone in your body. But when we take replacement hormone, or antithyroid meds, the terms no longer apply. We are not hyperthyroid when we are on the proper dose of antithyroid meds; we are not hypothyroid when we are on the proper dose of replacement hormone. One additional factoid: replacement hormone is chemically identical to our own thyroxin (T4). It works exactly the same way naturally produced thyroxin does. It’s only side effects are if you have too much of it (you become hyperthyroid) or too little (you become hypothyroid). Occasionally individuals can prove to be allergic to some of the inert ingredients used to turn the chemical into pill form. But there are many different formulations, including some that eliminate food dyes, to get around any problem like that.

[Kimberly]

#1169856

Hello – You mentioned going off the ATDs in January…just a quick comment that the latest guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists recommend antibody testing prior to withdrawing anti-thyroid drugs. The concern is that if you withdraw the meds while antibodies are still raging, you are extremely likely to head hypER again.

[snowboo]

#1169857

Oh, no, I get tested for antibodies and all my thyroid levels every 6 weeks. My next appointment is in January and the plan is to go off the meds after those results come in, depending.

I’ve since cut back on my work hours in an effort to calm myself down before then too, so hopefully I’ll have lowered my antibodies by then. They were still lower than the last time (I don’t know which antibodies I had, but last time I had a bad flare up in 2005ish, they were at 12 and this time, they’re just under 4), and I was slightly hyper, hence the low dose of tapazole for now (2.5mg a day).

The more I consider it, the more I think a partial thyroidectomy would be a better solution in the short term. It would allow me to partially regulate my own hormones during pregnancy and depending on how much they take out, reduce the potential for a flare up after birth too. In the long term, RAI may still be necessary but that is apparently true for 20% of RAI patients anyway, right?

[Kimberly]

#1169858

Hello – This is a decision that you will need to make in conjunction with a surgeon, but the latest guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists note that total thyroidectomy is the "procedure of choice", due to the risk of recurrence with subtotal thyroidectomy.

[snowboo]

#1169859

I realize there is a greater risk of recurrence, but my goal is to get through pregnancy without medications, without damaging my ovum with radiation, etc. You know what I mean? If I have to undergo treatment twice, once before and once after babies, I’m ok with that, especially if the goal is my babies’ health in the long term.

If pregnancy suppresses the immune system reducing the risk of a graves’ flare up over the gestational period, then why wouldn’t the goal be solely to limit the intensity of the post-delivery flare up? After the baby is weaned, wouldn’t that be the time to consider more invasive treatments?

I know I’m a little cynical, but we as women are sold so many medications and treatments all while the risks are downplayed and it just doesn’t seem right, especially when our bodies are responsible for the creation and development of another person. *shrugs*

[emmtee]

#1169860

Is the downside of partial thyroidectomy only a matter of recurrence? I would think it’s also a matter of the surgeon trying to guess how much of the thyroid to remove. What are the odds that he’ll get it exactly right? If he doesn’t remove enough, you’re back on anti-thyroid meds. If he removes too much, you’ll be on synthroid anyway, so why not just have the whole thing removed? Synthroid isn’t so much a medication as it is a synthetic version of a hormone our thyroids normally produce.

This really is something to discuss with a surgeon. Hopefully your January test results will be good and you won’t have to worry about it for now. ” title=”Smile” />

[Kimberly]

#1169861

@emmtee – Yes, you are correct…we are working on a story on thyroid surgery for our next newsletter, and the thyroid surgeon I interviewed stated that it was *very* difficult with subtotal thyroidectomy to find the exact balance that would stop patients from being hypER without sending them hypO. So this is definitely something to factor in to the final decision.

[snowboo]

#1169862

But we face the same risk with the dosing of RAI, no? I mean, they try to get it so that you’re not completely hypo, that just enough tissue is killed to keep you stable, but they’re rarely successful in that respect.

Thanks for the well wishes, Emmtee. ” title=”Smile” />

[snelsen]

#1169863

I agree, Snowboo, I think you are correct. You thinking is 100%. in my opinion. They make their best guess on what will completely destroy the gland. But sometimes it is not enough. That is why some people have to have RAI again.
Actually, I DID have a sub-total thyroidectomy, and was euthyroid for over 30 years. Then became a little hypo, and began Synthroid.
Shirley

[Kimberly]

#1169864

Hello – For patients who were treated several years ago, docs used to try to give just the right dose of RAI that would kill off *part* of the thyroid but not all of it. The theory was that if you destroyed just the right amount of thyroid tissue, that the patient would end up euthyroid (normal) and wouldn’t have to take *any* meds. However, the recurrence rate in these patients was fairly high. So the thinking now is to give a “fully ablative” dose on the first treatment, meaning a high enough dose to completely destroy all thyroid function. Recurrence can still happen occasionally, though; I attended a recent presentation that said around 5% of patients require a second treatment of RAI.

[LaurelM]

#1169865

One issue that I don’t really see addressed in the above discussions is that if there is a flare up post-partum (which is highly likely) then it will require treatment at that time. You need to factor into your decision that treatment cannot wait until a baby is weaned. If you are planning on nursing, RAI will interrupt it (at least temporarily if not permantly). ATDs MAY be a choice for a nursing mother but there is a small risk of passing the medication throught the breast milk. I was able to continue nursing but we had to do regular blood work on my infant to ensure her thyroid levels were not being supressed.

My daughter is now a healthy 7 year old but I wouldn’t choose that route if I were planning a pregnancy again. It was very stressful at the time.

Best wishes as you make this difficult decision.

Laurel

[snowboo]

#1169866

Yeah, there are a ton of things to consider, especially around pregnancy, which is why I’m bouncing ideas around. If eating a tomato can have negative effects on the body, there’s no way RAI is harmless and for some reason, it seems more difficult to find unbiased information about RAI and that adds to my skepticism. To me, there has to be a reason beyond just cultural differences why surgery is favored everywhere else but not here in North America and I don’t want to find out what that reason is by swallowing the pill, you know? I want access to all of the information- good and bad- before deciding and it seems that information is far more readily available for surgery than it is for RAI. JMO.

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