[Anonymous]

#1020065

Well, I have to admit that my endo knows what she’s doing. I think I have had a textbook case of Graves, and a textbook case of the best response to treatment. After RAI in December, I felt perfect five weeks ago with a T4 of 10.4. The endo gave me a prescription for levoxyl, and said I would probably start taking it in five weeks. Right again! Five weeks later my T4 is now 1.1, very low, and so I start the the replacement meds tomorrow. Not a moment too soon, because I have been sleeping around the clock for the past 10 days!

I hope her guess for the dosage is as good as her estimates on everything else!

Blessings to all, but especially to those who have to struggle so much on this on this journey.

Tami

[Anonymous]

#1075900

Hello All,

I realize we all have been talking lately about RAI and how it works and the good, the bad and the ugly. I did a lot of reasearch on the subject matter when it came time to say goodbye to my throid and everyone agreed that surgery was the best for me since I was having such a bad time with my eyes as well. My question for this wonderful panel is this. My NEW Endo suggested that I have RAI now to get rid of this thing since I have so much scar tissue from surgery. Has anyone come across this problem of having both and if so, did they have RAI or surgery the 2nd time around? Thank you all for helping me learn all I can.

Diane

[Anonymous]

#1075901

I have heard of this type of problem before, but do not remember how it was resolved. You might try a search on this site, but I am not sure how helpful it would be, since I only remember this coming up once, or perhaps twice, in the ten years or so I’ve been helping to moderate the site.

Forgive me, but my memory is sporadic these days–a lot is going on in my daily life. Anyway, I am assuming that your endo has recommended RAI because you are still hyperthyroid, not just to get rid of scar tissue. Has the endo explained why surgery would not be an option? Have you consulted with your thyroid surgeon to get input from that type of doctor? Would surgery be 1) more difficult or 2) more likely to result in adverse side effects (i.e. damage to vocal chords etc.) given the scar tissue?

I truly believe that well-qualified doctors should be your source of advice, not some anonymous person online, even if that person claims to have had a similar situation. We are not all equal when it comes to medical situations, even if the outward appearances look the same to those of us without medical training. You could be seriously led astray.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1075902

This has been addressed before. In my case, I had to have two of my parathyroid removed almost ten years after RAI. They became overactive. Totally not related to Graves’ disease…

I asked the surgeon to remove what was left of my thyroid gland incase I had an eye flair up again. When he did the surgery he left my thyroid alone. You see after the first RAI it had shrunk and would have been difficult to remove. He told me that is often the case after RAI.

My scar is the same as I would have had if I had a thyroidectomy and is not noticeable for the most part. You have to know me “really” well to get that close to my neck to see the scar.

Jake George
On-line facilitator

[Anonymous]

#1075903

Dear Bobbi and Jake,

Thank you for posting your thoughts about my situation. As far as my past problem I had a HUGE Goiter and the scar on my neck is like yours Jake. It’s very long but in a place where you do not see it unless you are looking there.

My eye problems where the main reason why we opted for surgery the first time. From the moment I arrived home (afer the surgery) (in the hospital for 5 days) I knew that I wasn’t feeling very well at all. Knowing that it would take some time for me to see some sort of results I didn’t question my medical problems or WHY I wasn’t on medicines for being Hypo. It was after I had my third blood work and my results were still bad that I began to search for more help.

I have changed Endo doctors and now have 2 eye doctors working on my case. About 2 months ago I had tubes put in my eyes to help with the tearing and pressure. It has helped some, but I still have very major eye problems. When I approached my new Endo and my new Eye doctor they both agreed that it would be NOT in my best intrest to have another surgery. I understand that my surgeon had left a very small piece of my thyroid in due to the location. But everyone agrees that I have way too much scar tissue to atempt me having surgery again, hence the suggestion of RAI.

I have read many posts on this site and can relate mostly to Jake. It seems that we both have had our troubles with trying to get our problem taken care of. Like I have stated before, I am so blessed to have found this site. Not only for the information provided to me, but to know that I’m not the only one out there with these problems. So once again I thank you all for your continued support. I will keep you all informed of my situation and I WILL post on here my happy ending when it comes.

Diane

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