[Anonymous]

#1127505

I’m so sorry to hear that your doctor scared the wits out of you. I, too, got taken off Tapazole after three weeks. And, I was scared of the options. My endo recommended RAI and said he couldn’t recommend surgery because it’s dangerous when you’re hyper (bleeding is a problem), blah blah (I don’t remember exactly).

Anyway, he upped my beta blockers and told me I had to be off Tapazole for 3 weeks (not the 6 your endo stated) and we scheduled it. However, I panicked. I just couldn’t do it, so I sought a second opinion. It was the best thing I could have done for myself. The second endo (at Mayo in Jacksonville, FL) told me I was not “in crisis” and had some time to make my decision, which made me feel much better. He, too, recommended RAI and said that my levels were such that remission on meds was very unlikely. Just being told that I had some time to think about it and adjust to a choice relieved a TON of my stress, because the local endo had made me feel much more rushed about things. And, the Mayo endo said there was no problem with RAI even though my levels were very high, and he explained why. I spent over an hour asking detailed questions and getting in-depth answers. It was time and money well spent, for me.

If you can, get a second opinion from a university-type hospital that has specialists that you really trust. I don’t think just any old second opinion will ease your mind (it wouldn’t have for me) because this is a huge decision for you to make and you need to feel good about it.

One other thing, I have exercise-induced asthma and had to change beta blockers to make it easier to breathe. If you have asthma and you’re on beta blockers, that could be a factor in your breathing. (Just a random thought as I don’t know your condition.) Or, it could just be the regular hyper stuff.

I wish you the best in getting through this. If only we could always take the time we need to adjust. I cried and cried when I got taken off the Tapazole and was totally shocked, so I understand why you’re upset and afraid.

Just don’t put off taking care of this and go with your gut. If you think you’re sick enough (and you trust your endo) to need surgery ASAP, then don’t feel bad about making a quick decision. You have to do what’s best for you.

Hugs,
Melinda

[Anonymous]

#1039341

Well,

I was having an allergic reaction to Tapazole. I think I had been on it two or three weeks. I had a skin rash and trouble breathing. I took everybody’s advice and made an emergency visit to the endo today. You can imagine my shock , when he told me that I was obviously not improving with antithyroid drugs. He also said due to my high levels of thyroid hormone , it was unlikely that I would ever respond to ATDs. He next dismissed Radioactive Iodine because I would have to be off ATD’s for at least six weeks before that could be done. He told me that with my heart rate and symptoms he could not see me going 6 weeks with systems like I am having. He flat out told me that surgery was the only option that I had and the only way I would ever have normal thyroid levels. Any opinions of this? I am scared to death!

[Anonymous]

#1127506

Kristen – sounds similar to me (1972)…..anyway, I’ve had Graves’ since then. I know that a second opinion is no better than dealing with a surgery situation, but, what have you got to lose?

My opthalmologist ‘sez that he “sees” less eye problems with the surgery route. That is confirmed by my life experiences, also. I had a massive, grapefruit-like goiter. Took iodine for a month, then, surgery. My systems were way-out, like what your’s apparently are. Heart, etc. I never read what “everybody else” is replying to you, first. I see the post and gut-respond. RAI is not what I had, but, you couldn’t pay me to do it, all these years later.

I just see so much heart-ache related to it, more so than surgery. That’s my personal opinion. I still have “neck-twinges”, now I’m 42! I was “stable” after surgery for about, ummmm, a year. Then thyroid meds for underactive. Since then, I’ve had probably 4 recurrences with hyper swings that would kill anyone BUT a warrior! Comes with the territory.

I know that it’s a real mess to think about. Just don’t give up. Reading the board makes you think it’s a neverending saga…but, you will experience things that you read about, and some, you will never experience. We all have “commonalities” to GD, but, the degree & severity that each of us encounter differs, as we all do!

Work with any Internal Medicine/or (blah)Endo that makes you feel comfortable. My 70 + father still plays tennis with my surgeon! There are good guys out there – trust in the doc is the best we can hope for!
Take care! Keep us posted through your dilemma, and sorry for such a late response. I know I need to look at the old bb, more often!

[Anonymous]

#1127507

Hi Blue Sky: Can you tell me if you had or have the eye bulging problems. If so before or after surgery. What improvements have you seen with the surgery in comparison to what you were like before?
I am concerned with my eyes mainly(my mom has one eye only but from retina detachment not this)as all in our family are because of her problems. Did you also go through the Hyper and Hypo thing back and forth? I (vainly) don’t want to put on any weight also.. Did you??

regards, Ricki

[Anonymous]

#1127508

Hello, Ricki! Yes, I had bulging eyes, prior to surgery. My beginings were 12 yrs. old, horrible spinning – wakeup to that!, little gal went to big gal (not fat, just big, like, where did this chest come from?!) 5’7 1/2″, and fish eyes. The goiter was next & grapefruit size. I’m even conflicted now with terminology from the ’70’s, to 2000. Oh well, back then it was called a goiter. They removed “all but 10% on one side and all but 15% on the other side of my thyroid.” They didn’t remove my entire gland. Not that it matters much….

The main reason for my surgery was the incredible increase in all metabolic functioning. “We’re scared her eyes might pop-out of their sockets”….my heart rate was constant above 120 bpm. I don’t think that’s physically feasible (eyes “popping-out”)…but, back then…

I’m 42 now. I’ve had numerous bulging problems since the surgery, none of which had to have ANY intervention. My opthal’s have always taken the “wait-n-see” approach to GD. That scream’s volumes, for me. With the slight exception of “possibly going blind”, after my GD “kicked-in” with the birth experience of my daughter. I wore wraparound sunglasses, all the time, for the light “problems”…taped the lids at night, etc. All this self-corrected. Bottom line…this part of the disease is constant, with or without surgery. Has to do with the autoimmune antibodies that we are afflicted with for life, predisposition of genetic material. (?)

Your family should be vigilant of eye problems, given the thyroid-link. I also thought, (one incidence) that my eyes were “doing it again, bulging…double vision, etc.” Turned out that my eyes were not bulging. The LID had stretched. Thus, sagging a bit. This too, self-corrected. I had been offered the cosmetic surgery choice, but, took a pass on this…..glad I did. Who needs it if it’s subject to change, again?

I am not discounting the others on the board who had their own unique situations of vision. This is a unique disease and effects everyone of us in different ways. Just find the best opthal that understands GD. One you can discuss things with and you will be doing the best you can with what you’ve got.

The weight thing…I often tell folks to keep a size “up” & “down” of clothing. It happens often with us. I’m coming off of a 5-6 year weight gain, where nothing I did changed my once constant 125-130 into 165 lbs.! Totally “hypo”….but, “well within the normal limits”. “Tweaking” medication with your doctor, is not my recommendation for weight problems. I’d rather ride out the storm….! ‘Cuz I’ve had this for sooooo long, I KNOW everything always changes, again. If I’m affected by nerves, mental & other physical changes, I go to my Internist, give some blood and usually, I’ve changed enough to be able to see the normal limits are not happenin’!

It takes a certain amount of focus on yourself & then, let it go. Find the answers of symptomatic treatments and move on. GD lets you know when it’s time to see the doc, again. If your doc has recommended surgery, it must be medically based as necessary. (Tumor?/Goiter?/Other?) I’d always pay for that second opinion. Sometimes, you are only left with too many alternatives, which you and the TRUSTED physician can weed through. The back & forth is for life. I really don’t know anyone who has GD that has surgery, rai, block, whatever and doesn’t have a life of no symptoms, after treatment.

This is where I have to differ with Dr. Nancy’s letter on the NGDF homepage…Normal lives are individual, like this disease. I functioned in a job (good one) after surviving college. Raised a family. All the while, going through the motions of varying difficulties, of Graves’. We all can “check back” with good stories, of happy lives…but, always know that “it could be my Graves'” when your body starts acting up. Always ask questions! Take care! Hope this input helps!

[Anonymous]

#1127509

Hi Blue Sky: I thank you for all that information which I’m sure is going to become more helpful as the days wear on..I didn’t realize that you could get it so young.. So, you’re well aware of any problems as they come.. I’ve printed it out to put with my other info on this disease.. I can cross my fingers and take one day at a time..

best wishes, Ricki

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