[dlluvspigs]

#1059014

Hi, Just wanted to introduce myself and give my story and hopefully get some good advice from you all.

I am 53 years old and 12 years post menopausal..don’t know if that matters but thought I would mention it. I go every year religiously for complete physical and my thyroid tests always come back normal.

Last Nov. 2011 I started on HCG diet (drops) lost 25lbs was so happy, went in for my physical in Jan 2012 and my thyroid tests came back hyperactive. He re-ran the tests still hyperactive, went in for a thyroid scan came back hyperactive. He then sent me to an endo specialist, he took some more tests along with the test for graves everything came back hyperactive and graves. He told me to stop taking the HCG and then come back to re-run the tests. I went off the HCG and have had the tests re-ran several times. He put me on Methimiazole 10mg 2X a day for a short time my levels did come down a little so he downed it to 5 mg 2x a day my right arm broke out in hives and my tongue felt like it had been burnt so this last visit he took me off the meds and said the only other option is radioactive iodine therapy, the other med that is available he does not like giving out because it causes problems with the liver.

He believes that my hyperactive thyroid was dormant if you will…and the HCG brought it to life. I am very nervous about this radioactive therapy and I guess I am just looking to hear from those who have had this done and to find out what to expect. The internet is a wonderful tool but sometimes it can really scare you…lol

Thank you for your time and I look forward to hearing from you.

I have put this on hold for a little while because I have other issues that I am faced with and so many other tests are lined up the next few weeks. I am hoping that I do not go into what they call a storm…

Thanks again,
Diane

[Bobbi]

#1171569

Please don’t put off treatment for long. It is not in your best interests.

I had RAI, and my mother had RAI for Graves. The treatment gave us both back our health. If you have specific questions, I’d be happy to try to answer them.

[adenure]

#1171570

Hi!

I too would encourage you to start treatment as soon as you can. Is surgery out of the question for you? I think our levels are supposed to be within range for surgery, but I think in some circumstances, surgery can still be performed after being given something to help with heart rate. I forget what it is now- potassium iodide maybe?

It sounds like your reaction to methimazole was what would be considered “minor” as opposed to liver issues or problems with white blood cell count. I thought that, as long as the reaction was minor, an endo. would prescribe PTU if a patient wanted to try it. It was just in the case of a severe reaction (liver/ CBC) that the other drug- whichever it is, PTU or methimazole- would not be prescribed. I think PTU has a higher risk of liver problems, but I know that methimazole does carry those risks as well. Maybe it’s worth asking about, but in the end, your doctor knows what is best for you.

Alexis

[TammyB]

#1171571

Hello and welcome, several things in your post sounded so familar to me so I can relate where you are at right now. As has already been mentioned please do not put off treatment. I know first hand where that can lead, for me it was in the hospital in heart failure. I don’t want to say that to scare you and I had other medical issues as well that most likely helped push me into the heart failure. I was very up and down and hard to regulate on the Methimazole so I did end up having the RAI tx done last August. As for the actual physical part of taking the RAI it was nothing. Leading up to the RAI I was taken off meds for 2-3wks prior. Had to have all the uptake scans and ultrasounds repeated and met with the radiologist to discuss the importance of following the instructions afterwards. Things like maintaining a certain distance away from people for a few days, separate eating utensils, keeping laundry separate. Just little things like that to reduce exposure to others. For me I also had to be off work about 10 days-which is longer than most need to be. At the time was working with babies or around pregnant women and just did not want any potential exposure at all. The actual day of tx went to the nuclear med dept, was given a vial with 2 capsules in it and told to put them directly into my mouth (not in my hand first) and to drink a whole glass of water afterwards. That was it, no pain, no problems swallowing out of there in maybe 5 min. Have to say the only thing that really bothered me was that there were so many people (maybe 5 or 6) in the room just watching me do this (I suppose this was a security thing-making sure I did not run off with the vial like some mad woman). Went home, curled up with a book, my laptop and the remote and that was it.
I realize this seems kind of long and rambling (which I’m good at) but this time it was intentional. When I first heard of RAI-I had no idea and was scared out of my mind. Hearing radioactive, I was thinking like cancer radiation therapy. Was worried about burns on my neck, the pain-things that did not apply to this at all. Hope this may be of some help.

[mvk]

#1171572

Welcome to the forum. I was diagnosed with Graves in March and had RAI a week ago. Graves was something I knew nothing about and now know more than I ever wanted to know but it is necessary now. This forum has been a great resource of information for me. Like I said, I am one week post RAI. It hasn’t been bad at all. The last two days I really feel better than I have for a couple of months. I actually feel like I can function a bit better. I will have my first labs in about a month and then have a scheduled appointment with my endocrinologist soon thereafter. I still have a lot of hand tremors and am very dependent on my betablocker for my heart palpitations. That is not getting any better yet. I do feel mentally better and it is a welcomed feeling. Please do something to get better soon. This disease doesn’t just go away unfortunately but now I feel like I am doing something to get it under control. If I were younger (I’m almost 62) I probably would have tried the meds first. Good luck in whatever you choose to do.

mvk

[ncpatches]

#1171573

Welcome! I’m new here too, just diagnosed on 4/26 and I am so thankful to have contact with others battling this dragon! A lot of good advice here, not from me, I know very little yet! But hang in there, they tell me it WILL get better.

[dlluvspigs]

#1171574

Thank you so much for your responses, I was so scared to have this procedure done mainly because I read that people experience pain afterwards…I am going to call my endo today for a couple of reasons. First I am scheduled tomorrow for an ultra sound because my gyno felt something in my ovaries he was not happy about, then I have to go in 2 weeks for mammogram. So my thyroid procedure would have to be at least 3 weeks away. Second and this is totally unusual for me I do not have an appetite, this started yesterday. I try to eat but I just can’t. So this has me concerned.

I am leaving Friday afternoon to go to TN to help my brother in law move back to MI and won’t be back in town until maybe Tuesday or Wednesday of next week so I don’t want to get to TN and get sick…ugh. The only thing I am feeling besides no appetite is kinda jittery.

I weighed this morning and I lost 2 lbs since yesterday.

I am so glad I found this forum you guys are really helping me and relaxing me so I can go through this.

I have been through so much. 1999 dx with bone cancer but after surgery ended up it was not cancer..thank God..went through a year of you know what being told I only had 5 years to live. Then neck/spine surgery, 5 months later 2 boys had stolen a car and hit me head on going 95+ mph had 3 more spine/neck surgeries and ended up with Thoracic outlet syndrome my right hand and arm are numb so I am on total disability. Just started feeling somewhat better then I was diagnosed with Osteopenia right hip and lower back and this hyperactive thyroid…Honest to goodness I am falling apart in my old age…lol Hubby says he is going to trade me in….lol

Diane

[Bobbi]

#1171575

Pain after RAI? The only pain associated with it is a soreness in the neck area (where the thyroid is). Some people report sufficient pain to have to take pain meds (typically over-the-counter type). I didn’t even need that. It was just a sore throat of sorts. If you consider that a body tissue is being “removed,” then you will understand the pain and perhaps not over-react to it in fear. You would have some pain from a thyroidectomy too. Although, even that is not reported to be hugely uncomfortable.

[Author]

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