[runlacie]

#1069539

Hi Shellie!

Welcome! I’m sort of new, too. I was officially diagnosed about a month ago and just had rai yesterday. Waiting is a pain, huh? How long til your endo appointment? Have you made any decisions on which treatment you want?

I am determined to get back to normal. What makes you think that you might not? I agree that as crappy as we feel now it is hard to believe we’ll ever be normal again, but we will. I don’t have much patience and it seems that would be a good trait to have with this disease, but with treatment and time we are going to be okay.

Hang in there!

[Hopeful23]

#1069540

Welcome to a great support group.

My name is Krystal and am 24. I have been dealing with this disease since I have been 21. I wouldn’t have gotten this bad if I had a dr that actually listened to me and didn’t over look my blood work for a year. Everyone has a different story. You will to. However you will relate to probably everyones story at some point.

I am just now starting to feel better but i use that loosely. I still have a lot of healing to do. I am however on my way to a better lifestyle and an easier way to handle graves. I choose the RAI option over surgery when the ATD’S didnt work in my favor. Its better for you to research and ask questions to figure out what is right for you. We have great facilitators and people who are here to welcome you and help support you in anyway possible. This is not a medical advocacy just a support group. welcome aboard even know the conditions are not so welcoming.

Krystal

[ShellieB]

#1069541

I’ve not talked with a doctor yet about treatments but have read about them on line. What do most people do? Is one more successful than the other?

After you have treatment, do you start to have energy again? I am assuming that stress will play a part in how I feel as I have read that Graves is a stress related disease?

Sorry for all of the questions!

[Hopeful23]

#1069542

well. there are two medications that do the same thing but are chemically done differently. tapazole and ptu are anti thyroid medications that block the absorbtion of iodine to your thyroid which comes from food that is in turn converted to metabolize your system. however these two medications are very harsh on your body with rare but very harmful side effects such as low white blood count being the main concern as well as liver function. tapazole is usually only taken one time a day where as ptu is taken three times a day and causes a copper metalic after taste to the point of vomiting. More people dont respond well to the Atds than do. when this happens you must decide on radioactive iodine which is non invasive or a total thyroidectomy which is obviously very invasive. all surgeries have risk of bleeding infection etc. On top of that TT come with vocal cord damage and parathyroid damage which regulate your calcium. However with a skilled surgeon its a 1% Chance of those complications actually occuring but it does happen. It comes down to what your dr. Feels is the most safe and accurate treatment for you. If He/She feels one would be just as effective as another one than it becomes a personal choice.

[ShellieB]

#1069543

What does TT mean?

[runlacie]

#1069544

TT = total thyroidectomy. I considered this at first but then realized that surgery was scarier than taking the radioactive iodine pill.

In the US, most do RAI. ATD’s are more common in other areas.

There are people who go into remission after taking ATD’s for a year or two, something like 30%. So that is a consideration. But even those who do go into remission usually end up hyper again at some point.

TT and RAI usually both result in hypothyroidism and lifetime thyroid replacement hormone pills every day. If you have Graves’ eye disease RAI can make it get worse.

[Kimberly]

#1069545

ShellieB wrote:What do most people do? Is one more successful than the other?

After you have treatment, do you start to have energy again? I am assuming that stress will play a part in how I feel as I have read that Graves is a stress related disease?

Sorry for all of the questions!

Welcome! I guess it depends on your definition of "success". I am currently taking Anti-Thyroid Drugs and hoping to go into remission. To me, having a functioning thyroid and not being on any meds would be "success" — although there are potentially some rare side effects with ATDs, including liver damage and a reduced white blood cell count. The good news is that with regular labs, you can catch these issues early, and stopping or reducing the meds will usually take care of the problem.

My stamina is not where it was before…but I have made major improvements. I would like to start playing competitive tennis again, but right now, I’m only good for about an hour on the court. Of course, when I started this whole process, just walking around the block was exhausting, so I guess I can’t complain!

As for stress, I have personally found that there is a direct link between stress and my level of hyperthyroidism. I have been doing weekly Reiki sessions, practicing meditation at night, and working *really* hard to "not sweat the small stuff". Any activities that you can do to stay in a positive mental state will help your recovery.

Best of luck!

Kimberly

[ShellieB]

#1019140

Hello,

I was diagnosed with Graves Disease about a month ago and am still waiting to see an endo as my family doctor wasn’t helpful!

In the beginning, I thought this disease had to only do with my thyroid and after treatment; life would be back to normal. However, after doing a lot of reading online, I am quickly realizing that is not the case.

I’m wondering what this means for me long term? Am I ever going to feel "normal" again?

Any help you could offer would be greatly appreciated.

Thanks!

[ShellieB]

#1069546

Thank you all very much for all the information!

At this point, I think I would go with the RAI. As of now, I just have some eye pain but no buldging. Can RAI increase the chance of buldging eyes?

Thanks again! ” title=”Very Happy” />

[runlacie]

#1069547

If you have the eye disease and have RAI it can make the eye problems get worse. You’ll need to find out if you do have the eye disease. Your endo should be able to help with that or else refer you to an eye specialist. I was, at first, afraid of the rai because my Grandma has Graves’ with bad eye involvement and I didn’t want it to happen to me. But my doctor says my eyes are fine, so I decided to go ahead and do the rai.

[ShellieB]

#1069548

Can you aquire the eye issues at any time? Or is it something that starts in the beginning?

[runlacie]

#1069549

I think that you can get the eye disease at any time even can happen independantly of the thyroid disease – and the two diseases can run totally separate courses.

[ShellieB]

#1069550

Wonderful!

Thank you very much for all of the information! This has been very helpful!

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