# Graves Disease forever .....



## Julie_73

Hello everyone,

I'm hoping there is someone out there who can help me at the very least get some information about my unusual situation.

Prior to diagnosis I was extremely intolerable of the heat, had tremors, and didn't have energy to do anything. I began gaining weight and went to my primary care physician who informed me to get off of the couch. After performing blood tests I was told not to exercise at all and to go to the emergency room immediately if I began having any chest pain. Thus, I was diagnosed with graves disease at age 29. Subsequent to my diagnosis I was given beta blockers which decreased my heart rate to 108 beats per minute. For those who are unaware a normal heartbeat for a person who is sitting in a chair doing nothing is 70 beats per minute.

Since I was always relatively good to my body (i.e. never smoked or drank coffee - although I do partake in a glass of red wine on occassion) I decided to have a complete thyroidectomy. My thinking was that if I had the thyroid completely removed my graves disease would disappear and I wouldn't have to have any radioactivity in my body.

I could give many more details, but at the risk of boring you (which may be too late) I will skip to today. Currently, I am a 33 year old female who has never been married or pregnant. I reached toxic thyroid hormone levels early this year and was completely taken off the medication. I received an uptake and scan approximately two weeks ago and low and behold half of my thyroid has grown back on the left side of my neck.

These are the questions I now have:

1) What is the effective rate of a second surgery to remove the thyroid and how risky is it to go back into the neck area a second time?

2) How often does the thyroid grow back?

3) If I elect to have another surgery will it just continuously keep growing back and will I just have graves disease forever?

4) What is the effective rate of radioactive iodine?

5) What risks do I face by putting that kind of radiation in my body?

6) What are the side effects of the radioactivity?

7) If I choose to have a family later in life will the radioactive iodine affect a fetus in any way?

8) I was told that I would have to basically quarantine myself away from everyone for a matter of time after having radioactive iodine to kill my thyroid. Could anyone share their experience of having radioactive iodine with me? What happened afterwards?

9) Who is the best physician to treat graves disease in the U.S.?

I'm certainly between a rock and a hard place right now and would appreciate any information to help with my predicament.

Thanks,

Julie in Vermont


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## GD Women

Hello,

1) I can't answer this question. From my understanding thyroid surgeons tend to leave a portion of the thyroid intact, in order to avoid damaging parathyroid's or the nerve that runs through the thyroid that works the vocal chords. The nerve runs directly through the thyroid gland, and can get nicked, or cut, during surgery. Even with the most meticulous surgery, small amounts of thyroid tissue are often left behind to help preserve the integrity of critical structures that lie beneath the lobes of the thyroid. This will be the case in all surgeries and amount.

2) I believe this is rare, however I have heard others such as yourself state that their thyroid grew back.

3) We well always have Graves' disease, there is no cure or treatment. The treatments are for the symptoms of the hyper side of Graves'. Once treated the antibodies can't attack the thyroid rendering us with hyperthyroid symptoms.

4)That depends on how much RAI is given per the goal. RAI dose is not an exact science, so they compute the dose per a persons weight, age and the size of the thyroid gland, unless doctor wants to completely destroy the thyroid, then a larger dose will be given. And of course we are not all alike so it will be different for different people.

5)In Graves' disease very little RAI is needed. A low dose, about the amount of a days worth of sun or one x-ray. 
The treatment has been studied for over 60 years. There have been many long-term research studies done, including longitudinal ones that followed patients for a long, long, long time. In the most recent, researchers looked at the death certificates of tens of thousands of people who had done RAI over the decades, looking to see if there were issues that could be attributed to the RAI. What they discovered was that it was apparent that "being hyperthyroid" during a lifetime had a greater impact on cause of death.

6) Some people might have short-term side effects which may include nausea and vomiting soon after treatment, which usually only lasts for a day or two. Some people will experience minor sore throat for a while and others might have significantly more soreness and needed to take an over-the-counter pain med for a few days. Some of the RAI may be picked up by the salivary glands around the jaws and under the tongue, causing painful swelling and enlargement of these glands. This is treated by drinking plenty of fluids, sucking on lemon drops (in order to stimulate the flow of saliva) and as mentioned occasionally pain medicine like aspirin. 
Also about one to two weeks after RAI you might feel a little more hyperthyroid than before because as the thyroid cells die off from the RAI they will dump stored thyroid hormone into the body.

7) I know of a women who had 6 children after her RAI treatment. There is no risk to fetus.

8) This depends on the amount of RAI dose, Nuc Lab, and your county/state regulations. I know of one who was with her grandson the same night, another slept with her husband (but no kissing or sex). Others like myself, had to stay away from people andanimals for 4 days, then no closer than 3 ft for the next three days, plus many more restrictions. The Nuc Lab should give you a list of of do's and don'ts and restrictions.

9) Endocrinologist who has and works with, many thyroid patients per year. After your levels are stablelizec you can go to your primary doctor for treatment.

Good Luck.


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## searchingforanswers

I don't know the answers to your other questions but I did the radioactive treatment. I was quarantined from everyone for about two weeks. I had to constantly chew gum or suck on suckers to keep my saliva flowing. The doctor told me that if I didn't exercise my saliva glands they could be effected to where they won't work in the future and I would have permanent cottonmouth. Thankfully that didn't happen. When I first took the RAI it didn't seem like much. Just a pill I swallowed. It took a few hours but I remember the feeling of having a sore throat much like the sore throat you get when you have a cold or the flu. I don't remember any other side effects other than being a little lonely for two weeks. However I might have had other flu like symtoms but I don't remember that being the case. I remember that people would come over to say high but would stay about 15 feet away at all times. I had to eat with disposable cups, plates and ultensils, which were all had to be disposed when when it was over. All in all, I would have to say that the process for me wasn't much to speak of. However, the RAI did cure my Thyroid storm and return things to relative normalcy, although I have never quite been the same as I was before this disease. That is another story which I bet has more to do with the thyroid disease than the RAI. Good luck in your decision.


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## Jenny

HI! I am 33, I was diagnoised with graves disease when I was 16. I had the radiation treament when they found out. Since then I've had two kids, age 6 and 13, they are both healthy and thankfully they do not have thyroid problems. 
The only problem I've had since I had the radation treament is my weight.
I do not know the anything about your other questions, just be careful around kids for a few weeks after the treament. Hope this helps you.


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## bradybunch

I think that most of your questions have been answered very well here, but I have a bit of experence in a few areas that no one else here seems too. My Graves is pretty odd I guess you could say. I am one of the very few that has had eye envolvement, as well as the skin envolvement, after RAI and becoming hypo. My child was born with Graves, it's passed threw the placenta to the fetus, but is very, very rare. So what I am saying is that RAI does stop the overactive thyroid part of Graves, but the other things that go along with Graves can't be cured by RAI. RAI didn't cause my child harm, it just made my doctors not think about the likelyhood of the baby being born with Graves. So many doctors treat Graves as cured after RAI but it isn't a cure. I have known several people who's thyroid glad has grown back, but RAI seems to stop that, so you could have the surgery and then RAI to keep that from happening, or you could just have RAI. I was also told to stay away from people for three days. And to double flush the toilets after I used them. Also the doctors to treat thyroid disorders if your lucky to find one in your area are thyroidologists(which only specialize in the thyroid), if you can't find one Endos are the next best thing. I'm one of the unlucky few that can't even seem to find an Endo within a hundred miles!! We are suppost to be getting one here soon!! Hope he's good.


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## alta

My Sister-in-law had her thyroid removed and it grew back, TWICE, the 3rd operation the gland had grown down behind her breast bone, Strangest thing her doctor had ever seen.


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