[Ski November 3, 2008 at 6:41 pm Post count: 1569]

#1075608

Hi Sally,

The only issue with the reproductive system (for women) is that the RAI not taken up by the thyroid is, for the most part, excreted in urine. While that is in her bladder, it is near the ovaries, and doctors typically tell us to wait at least six cycles (six months) after RAI in order to attempt pregnancy, to ensure that any eggs maturing at the time of the RAI have left her system. Immature eggs are not affected. Beyond that, there are no future issues in terms of reproductive ability from the RAI.

RAI has been in use for more than 50 years, and there are no statistics of higher incidence of any disease in the children of RAI patients.

Graves’ could affect her ability to have children later in her life, but only through a mismanagement of her thyroid hormone levels (meaning her replacement hormone is either insufficient or given in excess). That’s the best reason to make sure her levels are right FOR HER, once she is on thyroid hormone replacement. Some doctors will say that once you are within the normal ranges, you can stop worrying, but it’s simply not so. The range of normal is HUGE, and it is huge because people feel normal at many different points along that range. Our OWN normal is what we’re looking for. If you are lucky enough to have test results for thyroid hormone levels prior to her diagnosis, that’s one of the best ways to find it. Otherwise, you need a smart, compassionate doctor who will work with her to find it.

If the PTU works for her, and keeps her levels stable, there may be no need to contemplate RAI just now. Also, remember that surgery is an option if you (or she) have an uncomfortable "gut reaction" to RAI. Statistics aside, I know we all have our own biases, and we have other good choices, so why not take advantage?

Remember that remaining hyperthyroid is the most dangerous option. Anything that can helps her get to normal levels is a good thing.

If you choose to go ahead with RAI, typically it’s pretty anticlimactic. She would probably have a short period without the PTU (since it would block the RAI from getting into her thyroid), then she would have an uptake/scan to help determine the right dose of RAI (that’s a two-day test, she would take a non-damaging form of RAI ~ different isotope than the treatment version ~ and return for a nuclear scan the following day to see how much has been taken up). They would determine an RAI dose, make an appointment, then she would come in and take the pill (or swallow the liquid ~ it comes in both forms). For the first couple of days she would need to be somewhat isolated. As our body takes up the RAI, it also (as I mentioned earlier) excretes the RAI that was NOT taken up, and it is excreted mostly in urine, but also somewhat in saliva and sweat. If someone else were to come into contact with that tiny amount, it could conceivably cause damage in the other person’s thyroid, so typically we are told to eat from disposable plates, with disposable utensils, for the first two or three days. The patient should not be preparing food for others during that time. In addition, there is an element of exposure risk from the RAI that IS in the thyroid, so she would need to avoid cuddling pets near her neck, or holding babies, for a period of time. That time period is derived from her dose. The RAI isotope has a half life of 8 days, so every 8 days, it is reduced by half. After you go through enough 8-day periods, the amount is inconsequential. I was told to think of distance and time ~ if I was going to be with someone for a long time (many hours), I should keep my distance (a few feet, at least). If I was going to hold someone close, I should make it short.

The RAI does most of its work in the first six weeks, but it can continue to work on the thyroid for up to six months. During (and after) that period of time, everyone needs to be vigilant. Once you see four or five routine hypothyroid symptoms occurring regularly, have her blood tested. When her levels fall into the hypothyroid range, the doctor will decide upon an initial dose of thyroid hormone replacement, and then the search is on for the PERFECT dose.

I hope this helps!

[sallyw859 November 3, 2008 at 9:11 pm Post count: 2]

#1020007

My 16 year old daughter was diagnosed with Graves in August. She is did not tolerate the methimazole so is now on ptu. Doctor has suggested getting her levels at a "normal" range and then doing the radioactive iodine treatment on the thyroid. Looking for info on safety of this procedure on a 16 year old. Is there any danger to reproductive system of a young girl by having this procedure. What can we expect to happen.

[sjharner2001 November 4, 2008 at 8:36 am Post count: 18]

#1075609

Sally,
My 3yo daughter was diagnosed last week and her Ped. Endo told me this (in addition to what Ski wrote). She told us to remember that my daughter will always be considered as a Graves individual. So IF she has RAI and subsequent hypothyroidism, she will NOT be a hypothyroid patient — always an individual battling Graves Disease. Therefore the endo told us we need to keep in mind that when she is older, gets pregnant, she needs to tell her OB/GYN that she has Graves. There is a chance that the baby will be delivered with Graves. However, the endo told us this does not mean the baby will be a "Graves" child — it means the baby will have to get treated for Graves the first few weeks of life.

Being that my daughter was recently diagnosed, I’m still finding lots of fascinating info on Graves.
Hope this info helps.
Janet

[sallyw859 November 4, 2008 at 1:35 pm Post count: 2]

#1075610

Thank you both for the information. This has helped answer many of the questions we had about this procedure.
Thanks for taking the time to help us.

[parentwithgrace November 8, 2008 at 12:12 pm Post count: 8]

#1075611

My 12 year old daughter had RAI treatment about 6 weeks ago– we really did not have a choice. We are in the midst of it all right now and learning as we go. I agree with all that was posted here in relation to the risks– we were told the same thing and I am reading the same thing and I have met 6 woman that had RAI and they say the same thing….so leap of faith and lots of hope. Good luck and hopefully we can all help each other thru this online. grace

[npattersonModerator November 8, 2008 at 5:09 pm Post count: 398]

#1075612

Thank you for sharing about your daughter. I am sure we would all like to know how she is doing as she goes through her recovery. To any parents reading this: If you do not have a copy of the bulletin "Students and Graves", please e-mail me, and I can send you a copy as an attachment. "nancyngdf@bellsouth.net". The other parents will attest to its usefullness.

[Tisha1 November 13, 2008 at 4:28 pm Post count: 1]

#1075613

Hi, I am new to this site, like many of you, my daughter 15yrs old was just dx with Graves. Her MD had her on Methimazole, however she had a allergic reaction to this drug. We are waiting for him to get back to us with an alternative treatment. He is suggesting RAI, and I appreciate you input in this procedure. My daughter is not wanting to go this route, but I am not sure if there is an alternative. During the process of the RAI treatment, can the child still attend school?…Does anyone know if there is an alternative such as Nutrition or supplements or holistic supplments that can work? Thanks

[Ski November 13, 2008 at 5:07 pm Post count: 1569]

#1075614

Hi Tisha,

After the first couple of days have passed, your daughter will be able to attend school after RAI.

Believe me, if there were anything other than ATDs, RAI or surgery that would resolve hyperthyroidism, we would have ALL chosen it. Nothing reduces thyroid hormone levels other than these three treatments.

There are holistic treatments that can ease symptoms, but hyperthyroidism is the problem and must be resolved. In the days prior to these three treatments being available, fully 50% of Graves’ patients died from hyperthyroidism. It’s nothing to play with.

Your daughter is old enough to have a say ~ surgery is another valid option, and you would be perfectly welcome to choose that (unless there is some other risk factor for her undergoing surgery).

[parentwithgrace November 16, 2008 at 8:33 am Post count: 8]

#1075615

Hi Tisha, Our daughter had RAI treatment– we live 2 hours from the Childrens Hospital where the treatment was to take place so we stayed in the city for the week for the various tests and preparations. The actual dose was on a Friday and she returned to school the following Tuesday. If you lived near the hospital you could arrange RAI on a Friday and your daughter would only miss school on Friday and Monday– as the tests and procedures prior to the RAI are quick only requiring an hour or so of her time. Just thought I would share as your daughter is worrying about school. As was stated if there was an alternative we would have chosen it but this was the best we could find and you do not have a lot of time once the Graves is unmedicated to make a decision and work towards good health. Things can change fast. I know how difficult this all is. I have lost a lot of sleep over the worry– but we have a great doctor that cares about our daughter and I wish you the same. grace

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