[Ski]

#1072711

Hi April,

Well, the first and most important thing you should know is that RAI has no effect on fertility. It is usually recommended that a patient wait at least six months to try and get pregnant, which is an overly cautious rule, on purpose. People have actually become pregnant sooner than six months after RAI and delivered healthy babies.

Just as a quick overview of the reasons ~ RAI is taken up only by the thyroid, but depending on your uptake percentage, some of the RAI you ingest is excreted through your body’s liquid waste channels (urine mostly, a little bit in the sweat and saliva). While the urine is in your bladder, it is near your ovaries. The only eggs that are capable of being affected are those approaching maturity, so waiting for six cycles to pass removes all the eggs that could have been affected by the transient presence of RAI nearby. If you drink a lot of water and urinate often, you can also minimize that exposure.

Historical data shows that RAI patients have no more trouble getting pregnant than patients who have not had RAI, and the children of RAI patients are, oddly, a tiny weeny bit LESS likely to have certain diseases than other children.

There are many people here who have had beautiful, healthy children after RAI. I’m sure they’ll post to reassure you.

The other issue I should bring up is that, while it’s true that your chances of achieving a second remission are smaller than the odds of a first remission, maintenance on ATDs (Tapazole or PTU) can usually be achieved with a very small dose, if you’re interested in that. There are some issues with ATDs in pregnancy ~ PTU is the recommended medication for use in a pregnant woman, but even PTU is listed as a drug that passes through the placental barrier, so it’s not perfect either. The small doses required for maintenance are usually okay for pregnancy.

If you are debating between the two treatments (and let’s not forget surgery as an option!), you may want to consult with a pediatric endocrinologist to see what they think about each.

RAI is equivalent to the amount of radiation you’d get in a very long day in the sun ~ in addition to that, remember that thyroid cancer patients are routinely given RAI doses between 10 and 20 times what we are given to treat Graves’ Disease, and even that is considered a therapeutic dose, also not expected to affect fertility.

If you decide to go with RAI, I would suggest that you talk with your doctor about the pros and cons of an ablative dose. There are some doctors (less all the time) who think that it’s possible to give "just enough" RAI to leave your thyroid in place. The radiology doctor who gave me my first dose had that opinion, and even though I didn’t share that opinion, he gave me a low dose. I never went hypo, and I had at least two extra years of illness as a result, before I chose to have a second, ablative dose, which led me to health.

[April]

#1019588

My endocrinologist recommended on Wednesday that I do the RAI ablation. I am 29 years old. I was first diagnosed three years ago. After 1 1/2 years on Tapazole, it went into remission. I am now hyperthyroid again and will be doing another uptake test next week. I have not had children yet and wonder about the effects of the radiation. Any information or personal experiences would be greatly appreciated. Thanks.

[James]

#1072712

April,

I note that you mentioned that your endocrinologist recommended that you do RAI, but how do YOU feel about that decision. That is really what is important here. If you have resigned yourself to RAI at this point in time after trying ATD; I think that Ski has done a good job explaining the issues surrounded that option. I think that this group of Facilitators can provide you with all kinds of support in that area because they have been down that very road.

My experience on ATD’s was similar to yours in that I was in and out of remission, in my case several times over the course of a good number of years. Contrary to what may be the current belief, each of my remissions lasted LONGER than the previous remission and each relapse was much shorter in duration. I was definitely not one of those who had trouble achieving remission more than one time. One of my mistakes (I believe) was coming of off ATD’s too soon. I learned that very small doses of ATD over a longer course of time benefited me immensely. I’m not sure if it was keeping my thyroid levels at bay (euthyroid), or the immunosuppressive properties of ATD or both, that assisted in achieving remission and then finally staying there long term (over 5 years now). If you have been on small doses of ATD while you were in remission, that is encouraging. I’ve corresponded with people who were bent on staying on ATD’s as long as they could, but because of various factors, like a grossly enlarged goiter as well as the need to be on high doses of ATD; an alternate treatment option was ultimately necessary. I don’t know the details of your specific situation, but hope that you can continue the dialogue with your Doctor in making the best possible decision for you. This forum definitely has a variety of people all with a unique set of circumstances.

Wishing you the very best!

James

[April]

#1072713

Thanks for all the advice. I feel better about doing the ablation. However, I am becoming rather frustrated with my doctor because they are being slow in scheduling the uptake test. My TSH was less than .001 two weeks ago. She said that she can’t medicate me before having the uptake test done. She also said that an unmedicated thryoid responds better to the ablation. Is there any truth to that? Tomorrow will be a week since my doctor’s visit and I am still waiting on an appointment for the uptake test. Any thoughts?

[willowbreeze]

#1072714

Hi there, I am a new member and I think I had this treatment(previously call I-131) 23 years ago. I am now experiencing more hyper type symtoms and I have also hyperparathroidism and had an adenoma removed about 4 years ago. I thought the RAI? lasted forever. Now I"m hot all the time, etc, etc all the usual crudy stuff and I’m feeling pretty bad. I must have a real goofy endocin system! Help!
Ann

[DianneW]

#1072715

Hi Ann,

You had RAI 23 years ago? Have you been taking thyroid replacement hormone during that time? You’re correct that it’s not normal to become hyperthyroid again this long after having RAI, but if you had a very small dose and you still had a lot of thyroid tissue remaining, it may be possible, I don’t know. Have you consulted your doctor yet? If not, you must get in immediately. I suppose it’s possible something else could be causing those symptoms, but you could be right. In any case, a blood test will determine soon enough. Please let us know what you find out.

Best wishes,

[MathTeach1]

#1072716

April, my endo had me off all meds for 10 days before my uptake scans, so I do think this is normal.

Charisse

[Author]

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