update on my Graves disease delima

[DDH]

Well girls, I finally got in to see the endo about 2 1/2 weeks ago. She stated that I could get the RAI treatment or have surgery. Not until I said I didn't want to lose my thyroid did she mention medicine.

Well, I opted for the medicine to try and get it to go into remission again. It's done it before couldn't hurt to try again right?

Well, I've been taking it for 2 weeks now, Methimazole and Propranol, went in Tuesday and my levels have droped as hoped, BUT, Saturday my hands started itching. No big deal right. Well Sunday my whole body was itching to the point of digging my skin raw. My husband went to the store and got some benadryl for me, and I have been doped up on it since. I called the doctor today, and her she says that's it then. I have to have surgery or RAI. I have to call her tomorrow and let her know, cause she said if I decide on surgery then she will have to try to get it scheduled for this week, because it has to be done while my levels are closer to normal.

I'm soooo depressed. I don't know what to do. I am scared to death of surgery. Always have been, but I am more scared of putting a radio active pill into my mouth that I cannot take back and could cause symptoms.

I was in the 15 percent to gain weight with this, instead of lose, and now I'm in the 1 percent of folks that cannot tolerate the medicine.

I just hate feeling like I'm being pushed into something, but at the same time, what else can we do. There's not a lot of alternatives for this disease.

Well, anyway, I haven't been posting much, but have been lurking. I just feel like I complain to much. I haven't been able to ride and don't have any wonderful riding post to post so I just read everyone else's.

thanks for listening.

[NbyNW]

(((DDH)))

Sounds scary, what your docs are proposing, but they are probably giving you the best advice that they know how . . .

Whatever you decide i hope it all goes well and without complication

[pardes]

That's a rough hand you've been dealt. I don't know much other than general info about Grave's Disease but one thing is clear about any disorder and that is NOT to let anyone push you into a decision before you are ready.

From what you've said in this post, your symptoms aren't life-threatening right this second so why must the surgery be scheduled this week? You can always work to get your levels down again in a few weeks when you've had time to think.

Had you opted for RAI treatment, it would have taken months or more to work. It's a nasty disease but it's a long-haul disease. "Train" for the long-haul by whatever means calms you and gives you strength.

Take a breath and remember that is your body. Listen to it before you listen to others. Remember that doctors tend to push people around because many people prefer to be led like sheep about their illnesses. Doctors are busy and it's just easier to be dictatorial about such things.

One possibility is to call your doctor back and say you need some time to decide. If you decide on surgery, YOU choose the week it's done. Regain as much control over the care of your body and you will feel less stressed and uncertain.

When I was diagnosed with a brain tumor in 1994, the neurosurgeon was a great surgeon but an egocentric maniac. When I said I wanted to get a second opinion AND I wanted time to think, he acted insulted and claimed I would die of a stroke while I was "thinking." I didn't care. When I finally did go into surgery a few days later, I was ready to live or ready to die. I was a peace.

It's still a stinky hand to be dealt but it's your hand and you can make the process a positive journey rather than flying down a hill without brakes.

Best of luck and please keep us posted.

[OakLeaf]

(((((Donna)))))

I don't have anything to add, just my wishes that you get this sorted, and soon. And +1 about not letting the doctors push you. As you know I'm in the middle of the same thing myself :mad: and it's been really useful for me to educate myself as much as I can.

Stick to sites that subscribe to the HON Code and medical journals, ask questions, and RUN like the devil from any doctor who gets defensive or condescending when you ask questions (which unfortunately is most of them, but there ARE a few out there who will talk to you like a human being).

[BleeckerSt_Girl]

Can you get a second opinion first before doing anything irreversible?

[Thorn]

Second the second opinion....and taking things at your pace.

Did you ask about a different drug? Is the itching a side effect of the drug itself or the preparation? There have been people who have had side effects from the coatings on the pills. Switching from name brand to generic or vice versa elimiated the side effect. Just a thought.

Continually wishing you strength and patience.

[Smilie]

Sending healing thoughts to you.

[Blueberry]

No advice to offer - just continued sympathy. How frustrating!!

CA

[Chicken Little]

Radiation, or ablation, has been 100% successful for my Mom, Aunts, and Sister-in-law. Much less risk than surgery. I know my day is coming!

Best of luck with this.

[DDH]

I just wanted to update you all and let you know that I had my thyroid removed on Monday. I decided against the Radioactive iodine because I did not want to expose my 13 yr old to something I just wasn't sure of. Plus I decided if I'm going to do it, I just want to get it done and over with.

I am home resting and doing well. Of course now I have to get started on taking a replacement hormone for it the rest of my life, but I really didn't get a lot of choices in this whole thing.

Being allergic to the medicine that would have kept me in check is what took my choices away so I can't really blame the doctors or anyone else.

I was very happy with the surgeon. The endocrinologist that I was not to sure of is not the one that was doing the surgery so that immediately made me feel better. I guess I should give her a break, she truly was just looking out for my best interest and wanted to make sure I understood I had to decide something pretty quickly before my levels came back up from not being able to take the medicine.

I'm sore, and can't drive for a week, but other than that, I can do what I want or feel like doing. I went back Wednesday and they said I could ride or exercise as I please or feel like. I think I need to wait about a week, but I am anxious cause I had to stop for a while before the surgery too cause they didn't want my heart rate up so high.

Anyway, just wanted to update you all. Thanks for all the advice, help, and just listening. I really appreciate it all more than you can know.

[OakLeaf]

(((((Donna)))))

Sending good wishes for you to heal quickly and without too much pain, and for them to get your meds regulated ASAP!

[divingbiker]

I'm sore, and can't drive for a week, but other than that, I can do what I want or feel like doing. I went back Wednesday and they said I could ride or exercise as I please or feel like. I think I need to wait about a week, but I am anxious cause I had to stop for a while before the surgery too cause they didn't want my heart rate up so high.

Anyway, just wanted to update you all. Thanks for all the advice, help, and just listening. I really appreciate it all more than you can know.

Donna, I hope they get your levels stabilized quickly. You'll feel much better then.

Just a word of caution about attempting to get back to exercise too quickly. When I had my thyroid removed (many years ago) I did too much, too fast, and it wiped me out for about 2 weeks. So take it slow and ramp up. There's plenty of time to get back out there and ride!

I'm glad the decision-making is over and that you're on the road to recovery.

[Becky]

(((Donna)))

Here's hoping that you're feeling better soon, and that the dosage adjustment process goes smoothly for you!

[cosc]

I hope you have the worst behind you and each day you feel better.

[mudmucker]

Whew! I know from the other thread, this was a difficult situation, and a very difficult decision for you. You tried very hard not to have this outcome. Now it's done. I hope that your levels even out, and that this upcoming road isn't too rocky. But most of all, I hope you ((((feel better)))) and that you can begin anew. I bet you forgot what it feels like to feel good. I hope you get that soon.

[Thorn]

Thanks for updating us. No decision like this is easy, but keeping my fingers crossed that they get your levels adjusted quickly and you start feeling good again.

[jesvetmed]

I'm glad you've done something you feel good about. Now you can start the healing process and finally start feeling better. Take care of yourself and keep us posted.