[Bobbi November 6, 2008 at 1:55 pm Post count: 1324]

#1075567

I assume that you have discussed the information that you found on the web with the endo that you like? If not, you should do so. There is both good and bad information out here on the web. While the web can provide you with some really good information, it can also burden you with garbage information, and if you have a doctor you trust, that is your best resource for weeding out the bad information from the good.

RAI and TED: the best study I know about this issue came out about 10 years ago in the New England Journal of Medicine. It was a January issue. Anyway, in a nutshell, the research showed that in approximately 16% of RAI patients there was a "temporary" worsening of the eye symptoms (TED). The researchers saw (if I remember correctly) an immune system response after RAI, and if antibody levels go up (for whatever reason), then symptoms of an autoimmune disease will become worse during that time. The same study showed that a concurrent course of treatment with prednisone eliminated any temporary worsening of the eye symptoms after RAI. Patients who already have significant eye disease, therefore, would need either to choose surgery to remove their thyroid, or take prednisone around the time they did the RAI. The rest of us probably would have more risk from taking the prednisone than the 16% risk from the RAI – but that would be for our doctors to decide.

The only "fertility" issue I know of related to RAI involves the one you already know about — not using the eggs closest to maturation (i.e. waiting through six months or so of periods before trying to conceive).

There are fertility issues associated with uncontrolled hyperthyroidism (and untreated hypothyroidism), so either you need to be able to have "controlled" thyroid levels on PTU (which you say you have not achieved), or you need to remove some thyroid.

If your doctor "won’t hear of" surgery, you need to be very careful to understand why. There could be important reasons for you, personally, not to try to undergo the surgical removal of your thyroid. For one thing, surgery can be more dangerous if hyperthyroid levels are out of control. So, please be sure that your doctor’s bias against surgery is "general" rather than specific.

I know this is a difficult time for you, and I do wish you good luck with your decision-making process.

Bobbi – Online Facilitator

[spenanelson November 6, 2008 at 5:16 pm Post count: 33]

#1020000

I am 38 years old and was diagnosed with Graves disease 4 years ago. I had RAI 3 years ago.. went hypo and was on various levels of Levoxyl for three years. In January my thyroid came back with a goiter and I was told that I may need to have a second RAI treatment. I also have endometriosis, fibroid uterine masses and I had an ovary removed when I was 13.

This August I went in for fertility counseling and my lab results came back indicating that I was hyper again.

I went to my Endo and he reccomended that I do a second round of RAI and then do the IVF in 6 months.

What we decided to do was have me on ATD – went on PTU- harvest eggs and do the RAI. After 6 months we would complete the IVF.

Now I have done some research and I have found inconclusive information on the effects on overall fertility with multiple RAI treatments and I have also found some very scary information on RAI and TED.

At this point I am looking for guidance on what will be the best treatment for my situation at this point. I am nervous about the second RAI since I have begun to have new eye complications. My Endo tells me that there are no receptors in the ovaries that can absorb the RAI. But my concern is that if the radiation stays with you for so long and passes through your kidneys and right by your repoductive organs.. how can it not effect it?

Over the past 2 months they have increased my PTU three times and my symptoms keep getting worse after each increase.

I need to decide vey quickly but my Endo will not consider surgery and only reccomends RAI. I do have an appointment for a second opinion next week. But I am conflicted.. I love my current Endo, I am just not happy with his reccomendations at this point.

I know that regardless of the treatment,I will become hypo and there will always be a chance that my thyroid comes back. If I was not concerned about having children I think I would move forward with RAI. Howver at this point I am very concerned and worried about making the right decision.

Any input would be greatly appreciated.

Thanks,

Stephanie

[spenanelson November 6, 2008 at 5:41 pm Post count: 33]

#1075568

Thank you for your response. It is very difficult to weed through all the information so I really try not to look to hard.

I do trust my Endo, but I do know that he personally does not preform surgery nor does anyone in his practice. When I have asked him about surgery as an option he said that RAI was just as good with less down time and that he did not preform surgerys. That was is, no further information.

I have made an appointment with another Endo here is town just to reassure my concerns and fears. If he tells me the same thing as my current Endo, then I will do the RAI immediately and not harvet the eggs first.

I am also concerned with the fact that my thyroid has come back and continues to grow even on PTU. It is now starting to interfere with my swallowing. And while I would prefer not to have RAI or surgery and stay on the ATD’s I don’t think I have much time or a choice.

I wonder if I should to stay on birth controll pills during all this to try to save what eggs I do have. When they did the folicle exam it showed that I was only producing 4 – 5 folicles a cycle. Not very many according to the specialist. I am hoping that with the Graves under controll that number would increase.

Once again, thank you for your response. This is helping calm some of my fears and anxieties.

[Bobbi November 6, 2008 at 6:33 pm Post count: 1324]

#1075569

Just one thing: no one, that I know of anyway, has had an endo do the thyroidectomy. Everyone I know who had their thyroid surgically removed went to a surgeon whose specialty was removing thyroids.

Bobbi — Online Facilitator

[spenanelson November 8, 2008 at 5:38 pm Post count: 33]

#1075570

Thank you, now that makes sense to why he does not reccomend it. He is not a surgeon.

Well I have a second opinion on Wednesday for treatment options. I will also ask this new Endo for his stance on the effects of RAI on overall fertility. My symptom are getting worse and worse and they have not been able to get me stablized enough to do the first round of IVF (egg harvesting) as I would have preferred. I just hope that if I do decided to do the RAI prior to the egg harvesting for IVF, I will have made the right decision.

I think that is my greatest fear right now.. moving forward with the RAI treatment and then finding out that it has adversly effected my egg quality even though my thyroid levels have are better.

Stephanie

[candace3310 November 9, 2008 at 12:17 pm Post count: 4]

#1075571

I understand your concern completely! To give you hope…I had RAI twice (my thyroid was so extreme, they couldn’t do surgery at the risk of causing a storm) Just make sure that if you have the RAI again, you talk to the Dr. about putting you on prednisone to protect your eyes from getting worse from the antibodies.
I also have endometriosis and fibroids, even had a large cyst removed from my ovaries. My second RAI was in June 2003 and I had to begin taking synthroid in Nov. 2003.
I had a healty, beautiful baby girl this June without even trying.
I hope for the best for you, hang in there!

[spenanelson November 9, 2008 at 9:57 pm Post count: 33]

#1075572

candace3310 wrote:I understand your concern completely! To give you hope…I had RAI twice (my thyroid was so extreme, they couldn’t do surgery at the risk of causing a storm) Just make sure that if you have the RAI again, you talk to the Dr. about putting you on prednisone to protect your eyes from getting worse from the antibodies.
I also have endometriosis and fibroids, even had a large cyst removed from my ovaries. My second RAI was in June 2003 and I had to begin taking synthroid in Nov. 2003.
I had a healty, beautiful baby girl this June without even trying.
I hope for the best for you, hang in there!

Thanks for the great support. I will talk to them about the prednisone.

And funny thing is that I lost an ovary when I was 13 due to a cyst. I have been battling them ever since on my single remaining ovary.

Hopefully everything will work out and this time next year I will be pregnant (at 39 … hahaha)

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