OT: My 11 year Grave's Disease Nightmare is OVER

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telly
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OT: My 11 year Grave's Disease Nightmare is OVER

Post by telly » Fri Jan 12, 2007 6:09 pm

Hey Gang,
For the past 11 years I have been suffering from "Grave's Disease", which results in hyperthyroidism or over-activity of thyroid hormone production (TSH). Today, my Endocrinologist has informed me of my recent tests, from my post's title, you already know the outcome. It's OVER baby.

Trust me, "Grave's" really SUCKS. George H.W. Bush and Barbara Bush, ironically both have this disease. They got it late in life, I got it in my 30's
Graves-Basedow disease is a disorder characterized by a triad of hyperthyroidism, goitre, and exophthalmos (bulging eyeballs).

Due to the many physiological actions of thyroid hormone, many symptoms and signs are linked to Graves' disease:

Cardiac: cardiac arrhythmias (especially atrial fibrillation), tachycardia (increased heart rate), collapsing pulse and widened pulse pressure (difference between systolic and diastolic BP) and congestive cardiac failure with peripheral edema, ascites, anasarca.

Endocrine: weight loss in the presence of increased appetite, intolerance to heat, elevated basal metabolic rate. In premenopausal women, there may be a reduction in the amount of menses (oligomenorrhea).

Dermatological: profuse sweating, thyroid acropachy (clubbing) of the fingernails, onycholysis (fingernail destruction), palmar erythema, pretibial myxedema (3 to 5% of Graves' patients, not to be confused with the myxedema of hypothyroidism)

Neurological: tremor (especially noticeable on extending the arms), apprehension, weakness, headache, proximal myopathy (difficulty rising from a chair or squatting position), restlessness, and hyperactive deep tendon reflexes

Gastrointestinal: diarrhea (common), vomiting (rare)

Ophthalmological: thyroid eye disease (TED) characteristic of Graves' disease include lid retraction (Dalrymple sign) above the superior corneoscleral limbus, lid lag (von Graefe's sign), exophthalmos (forward displacement of the globes), periorbital swelling and chemosis. Visual field defects may be present if periorbital swelling puts pressure on the optic nerve. The patient may complain of dry eye due to incomplete lid closure.

This got me a little bit, as my eyes are a little bulgier than they used to me. But not as bad as this guy.

Image

Stomatological: multiple dental caries, periodontitis (rare).

Graves disease can lead to extreme hyperthyroidism which is life-threatening. This is called thyroid storm.
At the onset of the disease, I was losing 15 pounds per month, and was shaky, nervous with my emotions wildly fluctuating (oddly enough, oppositely, e.g. sad on happy occaisions, happy on sad one...very strange). Anyway, shaky and nervous are not good qualities for a TV cameraman, which I was doing at the time. I had to stop working until I got treatment.

I had 3 choices:
1. Kill off the Thyroid with NUKE YOU LER drugs, RAI (radioactive iodine) and go on synthetic thyroid for the rest of my life (although my skull would glow for many half-lives thereafter).

2. Surgically remove the thyroid and go on synthroid for the rest of my life.

3. Take medication which is poisonous to the liver and bone marrow called "Methimazole", which has more side effects than syntrhoid.

Taking Methimazole was my choice, as remission from Grave's was a narrow possibility, but it was possible. In hindsight, looks like I made a good choice.

My Endo had me go off my meds about a month ago. 2 weeks ago I was tested. Today I found out the results:

NORMAL TSH LEVEL.

"Mr. Monahan, your Grave's Disease is in remission".

Now, excuse me while I go do the Snoopy Dance.

BAH BUM BUM BOP A BUM DUUUUH DUM...
DUM DEE DEEEEEEEEE
DUM DEE DEEEEEEEEE
DUUUUM DEE DEEEEEEEEE

Image

Part of my plan for REBIRTH in 2007.
Thanks for your good wishes.
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bookwrm63
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Post by bookwrm63 » Fri Jan 12, 2007 6:21 pm

Way to go, Telly!!!! Congratulations and best wishes for continued good health!

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blarg
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Post by blarg » Fri Jan 12, 2007 6:24 pm

So, since good news comes in 3s, what's the other piece you're not telling us? lol


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telly
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Post by telly » Fri Jan 12, 2007 6:30 pm

blarg wrote:So, since good news comes in 3s, what's the other piece you're not telling us? lol
I'm going out for a walk now. Maybe I'll meet a beautiful young actress that has a "thing" for a portly dudes with engaging and humorous personalities.

Yeah Right!

Actually...I got a call from a producer today who works with the Beatles, does DVDs and stuff. As I am new in LA, today marks the first day someone has called me to hire me to work...on a Beatles project....FOR MONEY. .

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SleepingBeauty
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Post by SleepingBeauty » Fri Jan 12, 2007 6:52 pm

Congratulations! I'm glad you made the choice you did and that it worked.

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blarg
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Post by blarg » Fri Jan 12, 2007 7:25 pm

telly wrote:MONEY
See, I knew there was something else. I'm glad things are going so well for you.

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Good News

Post by kteague » Fri Jan 12, 2007 10:10 pm

Telly - Wow, what a way to start off the new year! Congratulations on the upswing in so many areas of your life - good news is refreshing.
Kathy


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Post by cpappychulo » Sat Jan 13, 2007 4:48 am

Telly, happy for the great news.
Just one clarification about Grave's Dz.:
GD is an autoimmune dz, in which your OWN antibodies attach to the TSH receptors of the thyroid gland and causes the gland to produce t4 and t3 hormones . In others words your antibodies behave like FAKE TSH hormone causing the thyroid gland to be constantly releasing t3 and t4.

Enjoy the good news


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Post by air » Sat Jan 13, 2007 5:54 am

Congratulations Telly
This is great news


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Post by rustynail » Sat Jan 13, 2007 6:56 am

W O W ! ! ! TELLY!!! ....a Happy New Year indeed!!!

Thank you for sharing your great news with us! Now I have an excellent reason for doing my first 'Happy-Dance' this year.... hang on a sec, gotta kick of my shoes for this one!! YIPPEEEE!!! Now go have a nice walk and make those girlies swoooon!


Tricia: who loved doing that dance..... hope she gets plenty more reasons this year!

If Stress Burned Calories, I'd Be a Size 5

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Post by Guest » Sat Jan 13, 2007 10:13 am

CONGRATULATIONS, Telly! What a courageous decision and I'm so glad it payed off for you! ENJOY!

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Absolutely Fantastic!!!

Post by Hoganflagle » Sat Jan 13, 2007 10:43 am

That is great!

My daughter was diagnosed with Graves Disease in 1990 when she was 12 years old and also got the eye involvement. Our first clue was her rapid breathing in her sleep. What is amazing is how quickly the disease popped up on her; don't know if the speed of the disease was coincidental with the puberty issue or what. At that time there were only two treatment options that were available for her: Surgery or the Radioactive Iodine treatment. We opted for the latter out of concerns for the necklace scar that goes with surgery. The doctors forewarned that the radiation was not a precise treatment and the results could either be not enough reduction of the gland, just right, or too much. Unfortunately for her it was just a little too much and now she has to take synthroid for the rest of her life. She battles her weight and has to get constant adjustments to medication.

You obviously made a wise choice. I just wish the third option had been available to us in 1990.

Again, congratulations.

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Post by Alisha » Sat Jan 13, 2007 10:45 am

Telly, this is the 'kinda stuff' that encourages us!!! Thanks for sharing.

May 2007 continue to be kind to you and keep giving you good news you can share with us.

Regards,

Alisha

......The information provided in this post is not intended nor recommended as a substitute for professional medical advice......

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telly
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Post by telly » Sat Jan 13, 2007 6:21 pm

cpappychulo wrote:Telly, happy for the great news.
Just one clarification about Grave's Dz.:
GD is an autoimmune dz, in which your OWN antibodies attach to the TSH receptors of the thyroid gland and causes the gland to produce t4 and t3 hormones . In others words your antibodies behave like FAKE TSH hormone causing the thyroid gland to be constantly releasing t3 and t4.]
Wow. Thanks for clarifying. I was always a bit confused about the process of why hyperthyroidism happens because of Grave's. I didn't have all the signs, no goiter. But my slightly bulgy eyes sometimes freak people out a bit because they are soooo blue. I really hope it doesn't kick in again. I'm going after eating more health foods related to thyroid health to prevent a flare up.

You know something strange? They really don't know the cause of it. Hereditary/Environmental. Yeah Right.

I think it's because I lived near some highly toxic plants with an Air Base nearby both doing naaaaasty things to the environment. I drank the water right out of the tap. Gads.

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telly
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Re: Absolutely Fantastic!!!

Post by telly » Sat Jan 13, 2007 6:31 pm

Hoganflagle wrote:You obviously made a wise choice. I just wish the third option had been available to us in 1990.

Again, congratulations.
I'm sorry that anti-thyroid drugs were not an option for you. Keep in mind that

A) I took the pill for 10 years. Not sure how many Endo's would allow that. Most only do it for one year. Tops. Then they will go for RAI.

B) I paid the price in some naaaasty side effects, including damage to the liver, and the inability to fight colds due to the drop in white blood cells.

Story: Living in SF's Chinatown and riding buses with the "coughers and the spitters", I had these severe colds I could not shake - sometimes for a month, then I would get it again and be reinfected and be down another month.

So now your daughter is hyPOthyroid and her energy level is down and is gaining weight. I can totally relate. All I can suggest is for her to exercise more or get involved with an activity that is fun and promotes good health, fun and social activity. I was in a championship drum and bugle corps and that kept me motivated in the arts and in shape. How about a soccer team or after school softball?

By the way, RAI is STILL an inexact science. My endo's position is to DEFINITELY kill off the thyroid, go hypo and take synthroid. This was my next step and I will never say never as I may have to take that path as my age progresses.

But hopefully NOT! .
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