[aaagraves December 1, 2008 at 8:42 pm Post count: 2]

#1075736

I have had the RAI treatment and I would highly recommend having surgery. This treatment did not work for me becasue I was so extremely hyperthyroid.

Does anyone know if you have had RAI already done–if you would be a candidate for a thyroidectomy? I would suggest

[Bobbi December 1, 2008 at 9:53 pm Post count: 1324]

#1075737

This is basically to aaagraves, about the recommendation to have surgery rather than RAI, because her RAI didn’t "take." Or, to anyone else, for that matter who thinks that surgery will definitely "fix" things — as opposed to RAI. The data suggests that the failure of the treatment to correct hyperthyroidism is the same — approximately 10% — for either RAI or surgery.

There are undoubtedly many factors to explain this bit of data — primarily, however, it is the misconception that people have about how much tissue the surgery will remove. As a general rule, surgeons leave "some" thyroid tissue in order to protect the parathyroid glands, and also in order to protect the nerve that services the vocal cords (which runs through the thyroid). So, our thyroidectomies are, typically, "partial" not total. And if thyroid tissue is left over, there is always the possiblity that there is enough for the patient to remain hyperthyroid — less hyperthyroid than before, but still hyperthyroid.

Whether someone who has had RAI can then opt for surgery is a question I don’t have the answer for. It may vary from patient to patient. You would need to talk with your doctor.

Bobbi — NGDF Online Facilitator

[crjszb January 8, 2009 at 6:48 pm Post count: 3]

#1075738

WhiskyWitch- I have been thinking about you daily since your post. Did you go through with having a thyroidectomy in December? If so, how did it go and how are you feeling today? Would you recommend it to someone in your similar situation? How long was recovery and hospitalization?

Things continue to be a whirlwind with me and my current situation. Since my last post I have visited with my OB/GYN who stated he would feel most comfortable caring for me if I were hypothyroid rather than hyperthyroid. Until recently we did not have an endocrinologist in town. Now that we do have one my OB/GYN stated he would feel more comfortable having the local Endo. follow my thyroid levels through pregnancy. After much debate with my husband we decided to go see the new Endo., switch my medication to PTU then (when advised )try and get pregnant. Well, I just returned from seeing the Endo., who I [i:1qbfliat]really[/i:1qbfliat] liked, and his recommendation is radioiodine ablation or surgery. So, now my options are this: ablation (can’t get pregnant for probably a year, meaning I’m [i:1qbfliat]another[/i:1qbfliat] year older) or surgery (more risk but faster regulation of levels). I don’t know anyone locally who has gone though this so I would value any advice you can give me from your recent experience. THANK YOU, THANK YOU!!

[Trisha January 8, 2009 at 8:17 pm Post count: 7]

#1075739

My endo would not give me a choice. Because I was in my early thirties and could possibly have more children. I had a thyroidectomy. I think the fear was a pregnancy to close to RAI? I had a wonderful surgeon and a relatively quick recovery. My scar is less than most so I have no complaints. He took 95% of the thyroid. My Mom had RAI. It worked. She had a rough time, but she also has fibromyalga and Rhuematoid so not sure what was RAI related. I can tell you I wouldn’t let anyone near my throat with a scalple until I was comfortable with it. I asked a lot of questions, starting with "how many of these have you done?" Good luck with your decision!

[Conchita_Maria January 15, 2009 at 10:55 pm Post count: 3]

#1075740

Hello – I am new to this website. I was diagnosed with Graves about 2.5 years ago. I had been on PTU until last week when my white blood cell & neutrophil counts were too low to safely remain on the medication. I’ve been lucky & have been able to keep most symptoms under control. I used PTU throughout my pregnancy & breastfeeding without problems. I just had to be monitored closely & went up/down with the dosage.

I’m not ready to have another baby just yet. But since I don’t want to have to wait a year to even start trying (or suddenly stop nursing), I am also looking at the surgical option vice radioactive iodine. Plus the thought of "radioactive" made me nervous – even though my endocrinologist insisted it was totally safe. In addition, my husband is an ophthalmology resident & was very concerned about the increased risk of Graves eye disease with RAI.

I have found this bulletin board so helpful, & I think I am making the right choice for me. Thanks to everyone for sharing your stories.

Maria

[bosslady January 18, 2009 at 8:36 pm Post count: 2]

#1075741

I had a total thyroidectomy on November 4, 2008. I was originally scheduled for RAI on Sept 4, but the day I went in to have the RAIU read and recieve my dose of radiated Iodine, the dr. found a cold nodule, and so the radiologist contacted my endo who said not to complete the treatment. I had to wait two weeks for an ultrasound, which determined that the nodule was not a cyst and looked "suspicious". I then had to wait another few days to hear from endo what the results of the ultrasound were. In the meantime, my dear precious father-in-law passed away. My emotions were all over the place. The endo finally scheduled me for a biopsy, which turned out to be non-diagnostic. After that, she recommended a couple of options. I could wait another 3 months and do another biopsy. (For reasons I don’t understand we would have to wait that long to repeat the biopsy). If the biopsy came back nonmalignant, we could go ahead with the RAI. Surgery was another option, which I chose because I was sick and tired of the emotional roller coaster. After the surgery, the ENT told me he removed a suspicious lymph node along with my thyroid, but that we would have to wait a few days for the pathology ti be sure. Exactly 5 days before my surgery was scheduled, my health insurance company dropped coverage for the hospital I wanted to use, so I had to go to one I really wouldn’t want to send my dog to for treatment. It smelled horribly like urine. During my hospital stay, my roommates medical records were mixed up with someone else’s. In the meantime, my lab work came back as benign. The surgeon himself seemed surprised, because he was concerned about the appearance of both the thyroid and the lymph node.

I wish I could say I am feeling fine and dandy. I am not. I ache in my joints. I am tired most all of the time or I am sleeping. I feel like a different person. My hair is coming out in handsful. My skin is so dry it is painful at times. I am now on antidepressants. 4 years ago I had a total hysterectomy for a cantaloupe sized fibroid and multiple ovarian cysts and periods so heavy I was so anemic I nearly needed a blood transfusion, so on top of the synthroid, I also take premarin. I wonder about supplements, but don’t know what I should take.

I used to be a fun, active, vibrant person, but I am just not myself. If I didn’t work in a family business, I know I would have been fired by now.

I have been having my levels checked just as the doctor orders. The ironic thing is, that my levels still show that I am hyperthyroid. I asked the dr if i should take a lower dose of the synthroid, but was told that for my height, weight, etc. I am getting the right dose, but that it just takes time, and that February would be the earliest he would even consider changing my dosage.
In hindsight, I would have waited it out. I wish that I had had more patience. This is not worth it.

[Ski January 18, 2009 at 10:05 pm Post count: 1569]

#1075742

Our body processes out excess thyroid hormone very slowly ~ so slowly that it can actually take up to six weeks for it to be completely gone. You are in the VERY early phases of your treatment at this point, but it is wise to be vigilant about your levels.

All of your symptoms will start to resolve once your levels drop. I’m a little surprised that you’re taking any replacement at this point, but it may well serve you to go more quickly from hyper to normal, so just be patient.

[judy January 23, 2009 at 11:58 pm Post count: 20]

#1075743

Hello I am Judy I have been treated in nuclear medicine with the procedure I think is called RAI. Thats the pill well i was treated 2 times the first time i was told it didn’t work so i went back and did it again (not sure if anyone had this done but the way they hand you the pill to take they act like its a bomb?? holding it away from them telling you to dispose of everything) I thought wow this must be nuclear . Anyway the second time I had a THROID STORM. I was in criticial care for 2 weeks. My heart rate was at 189.. I am lucky to be alive..
If I were you please choose surgery…
I could go on and on about mu journey

[JaneQ January 24, 2009 at 9:42 am Post count: 4]

#1075744

Hi Lady, I just wanted to add what my Endo said to me when I was weighing out my choices. The "Graves Eye Disease" is a Graves Disease thing no matter that type of treatment you have on your thyroid. Some people get it before they are even diagnosed with graves, and some it could be 10,20 years after treatment of any kind. It could happen anytime. Graves is a endocrine/autoimmune disease just as Diabetes is. Until "cures" are found we can only treat and manage Graves Disease. At least we have choices and we are in the drivers seat. Sometimes ?

Jane

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