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Fiddle-Faddle

Prayer Request

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Mamaw,

It was so good to see your post! I'm relieved you're doing better and will be able to go to Florida after all. Get lots of rest down there in the sunshine :D

Continuing to send lots of prayers, hugs and good thoughts your way!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Prayers and hugs for your continued recovery and I hope Florida is warm and gluten-free for you! Rest! Hugs, B


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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Hi All

Well I want to THANK all of you who took the time from your hectic lives to pray for me!

I made it through Disney with my grandchildren!!!

First off--- Disney rocks.... We did the dining plan & booked our meals in advance since there were four of us gluten-free....We LOVED the Boma in Animal Kingdom. Supper was soooooo excellent.... T.J. one of the chefs was outstanding.I can't say enough good about this place.... Another for lunch was Toy Story Pizza (Amy's pizza). Cosmic Ray's was nice also. I think I gained ten pounds.... brownies, cookies, zebra domes, choc. cake! WOW.

I think the dining plan is the way to go , worth every penny..... one place even reminded us to use up any leftover passes.....

I did get very tired in the afternoon but made it through with a few rest periods......

Now to my ever changing roller- coaster thyroid..... you know I started out hypo about two years ago then moved to hyper ( grave's) Goiter now..... Doctors started me on many things but had terrible reactions. I did tolerate PTU (12 pills a day). I went to see doc today to check on my latest bwork. --- now it appears I'm back into hypo..... starving all the time even tho I just ate, gaining weight ( I think you all know the drill). Tired beyond tired!!!! I still am not positive I want to do RAI but it seems like my only option..... I go for a thyroid update again May24th. if it is still okay I swallow the RAI on the 25th. surgery is too risky for me at present. I was told I could continue the PTU for another year but most likely I still would have to do the RAI at that time.

I want off the coudamin, lopressor,, & diovan ....... since the thyroid effected my heart ( no permanent damage yet) I have a good chance of no permanent heart damage.

I stopped the PTU today so if all goes well next week , well who knows! Doctor stated that I could start immediately having a thyroid storm all over again..... He finally admitted that he has never seen anyone as sensitive as me. I'm hoping that since I'm still on the lopresser, & coudamin yet that will not happen....

In the back of my head I'm still thinking I could be worse once I swallow the Rai pills.....I guess at this point I have to do alot of reflecting on this thyroid journey....it was a ride I wish not to ever repeat.....I'm truly torn over this... I know some have had so much trouble after the Rai & others feel like a million bucks after....any words of pros & cons are welcomed at this point!!!!

Again blessings to all & THANKS!

mamaw

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mamaw, What do you take for your Thyroid ?


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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Sandy,

PM Rachel--24. She's had the RAI and can talk to you about that. Things she's learned etc. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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At present the docs have me on PTU- 12 pills a day.

For Graves ? Have you got your original blood test results that confirm that you have Graves. I know this sounds bizarre but I have heard of so many that get misdx , and have RAI unnecessarily. I just want to make sure you are aware of the misdx that happen.

Have you given any thought or researched what you will do after RAI ? Will you take a complete Thyroid med like Armour, or a T4/T3 combo ? STTM has a Forum for people with RAI issues , and coping skills for post op.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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mamaw, What do you take for your Thyroid ?

Georgie: Thanks for showing the stopthemadnessthyroid site....I too take Levoxyl and still feel tired, dry etc. too bad we can't just go into pharmacy & get Armour without prescription. I now want to try it. (I have hypo thyroid and nodule issues).

Hope you're feeling better mamaw....

Deb


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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:( Hi, everybody.

Mamaw (Sande) emailed me that she was hospitalized with sudden major thyroid problems. Apparently, her thyroid suddenly became super-hyper, pumping out massive amounts of hormone that sent her heart into afib. I got the feeling from her that the doctors didn't seem to know what's causing this or what to do.

So please join me in some prayers on her behalf. Or post here if you have any clues on why a gluten-free celiac would suddenly develop this.

Thanks so much.

I will certainly add her to my prayer list. That was very sweet of you to let us know what her situation is.

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Boy, did I get blasted from the endo doc!!!! He is a very strong advocate of synthoid & nothing else. I asked or mentioned armour & he blew his top & stated in a stern voice that it should be removed from the market immediately.. He is very mainstream & hates alternative docs or ideas. I just keep telling him that there is a place for both treatments in todays lifestyles....

I have tried to ask many ????'s on stopthethyroidmadness site but no one ever answers & I have trouble even accessing it at times so I gave up....I have read alot on there....

I'm now praying that this will work for me.... the RAI......

Since I stopped the PTU cold turkey (doc said too) I have no more or less pain in my feet. I thought I had heel spurs along with plantar fasacites... so bad at times I could not bear my weight... but since I stopped the PTU the pain is getting less & less.Of course again I was told that is not a side effect of taking PTU.

I'm so tired at this point of the game I almost don't care anymore. I've lost my will be fight this.I only make it about four hours before I have to rest, then I'm good for a few more hours...

Actually I do need to e-mail Rachel 24 but this is it for tonite-- just to tired to do so....

thanks to everyone

blessings

mamaw

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-- just to tired to do so....

Take the rest you need and don't worry about your doctor. Mainline is very intimidated by the natural side of medicine it seems. I'm not surprised you found hostility.

Glad to hear removing the one med is taking away some of the discomfort you were going through.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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