Overwhelmed Linda

[Overwhelmed Linda]

Hi! I am new and have questions about RAI. I am 67 and was diagnosed in February with Graves Disease. I was very sick for about a month: lost 22 pounds, no energy, neighbors thought I was out of town, couldn't even get the mail which is on the porch. My primary care doctor was not available so I went to several different doctors who thought it was flu. Finally on my way out of the door the third time, my own doctor stopped me and after an EKG sent me to the hospital in an ambulance - thyroid storm. I am on 15 mg. of methimazole and 40 mg. of propranolol. My thyroid is not enlarged and never has been. I am in the process of trying to decide whether to have the radioactive treatment. In "Thyroid for Dummies" I read that the side effects are joint pain, stiffness, and headaches. I have already had both of my knees replaced (doing very well) and have arthritis and don't want things to get worse. Currently I have good days and bad days where I can hardly function (depression - am on Cymbalta and Ativan and have been for years). Any ideas?

[Andros]

Hi! I am new and have questions about RAI. I am 67 and was diagnosed in February with Graves Disease. I was very sick for about a month: lost 22 pounds, no energy, neighbors thought I was out of town, couldn't even get the mail which is on the porch. My primary care doctor was not available so I went to several different doctors who thought it was flu. Finally on my way out of the door the third time, my own doctor stopped me and after an EKG sent me to the hospital in an ambulance - thyroid storm. I am on 15 mg. of methimazole and 40 mg. of propranolol. My thyroid is not enlarged and never has been. I am in the process of trying to decide whether to have the radioactive treatment. In "Thyroid for Dummies" I read that the side effects are joint pain, stiffness, and headaches. I have already had both of my knees replaced (doing very well) and have arthritis and don't want things to get worse. Currently I have good days and bad days where I can hardly function (depression - am on Cymbalta and Ativan and have been for years). Any ideas?



Hi, Linda!! Welcome and I am sorry you have been so sick. I too survived a thyroid storm so we are on the same page here.

The thing about the thyroid is that it will take the path of least resistance. Thyroids have been known to grow substernally so I recommend an MRI, CAT scan or some other very good method (perhaps even ordinary x-ray) to see where that bugger is if indeed it is anywhere and I do believe it might be.

This is the first thing I would do and then depending on the results, your decision making process might be quite different.

Have you had a radioactive uptake scan? This is important also mainly to rule out cancer. It would seem that Graves' and cancer are bed mates often times.

Have you had any of the following antibodies' tests which you should have...............

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

[lavender]

Hi Linda. your story sounds similar to mine. Doc told me I had the flu for 3 weeks until she realized that my Pulse was super fast. I ended up in the ER in thyroid storm 3 days later. I never had an enlarged thyroid. My PCP just kept trying to feel for one and scratching her head!
I am glad that methimasole and propranolol are helping you. I needed much higher doses and still felt bad. I can't say much about RAI because I had a thyroidectomy a month ago.
Mood issues are a symptom of Hyperthyroidism. Especially anxiety. I had both anxiety and mood swings and was not capable of functioning at all between my thyroid storm and surgery. I have also had depression/PTSD, have been through lots of therapy, and have had a lot of people suggest meds to me, which I have never found to be helpful. Since my surgery, my moods have leveled out, my anxiety is gone, and I am actually happy most of the time. I fell like, oh, I think this is what the rest of the world feels like. It's pretty good for a change. Which is what I have heard those who have found meds helpful say. Maybe that will get better for you as your thyroid stabilizes.

[GD Women]

Hello Linda. You can't believe ever thing you read. We are not all a like so will experience things different. However, I personally never had an issue with or side effects from RAI. There are some who blame every illness they have on RAI when they probably would have had the illness/health issue in the first place regardless of RAI. I have never read a correlation of Graves' with cancer, not that it hasn't happened, I am sure there are some cases like any other health illnesses. I guess I'll have to do some research.

Graves' is not an easy disease, but we can survive through it.

Hang in there, be positive and keep stress free as possible.

[desrtbloom]

Hi Linda:

I am so sorry you are going through all of this with Graves' Disease. It sucks, but there is a light at the end of the tunnel. I agree with Andros and would suggest the uptake scan. If that is fine, then you might just want to stay on the Methazimole and Propanolol. It will take about 90 days to actually start noticing a huge difference. After 90 days I was able to get off the Propanolol. I ended up having a total thyroidectomy because my thyroid was so messed up that they couldn't even do the scan, but many people do not have RAI or surgery and just continue onthe medication and go into remission. I would suggest you talk to an endo, if you aren't already treating with one and have a full thyroid blood panel.

Best Regards,
Patti