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Anybody End Up With Grave's Disease?


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10 replies to this topic

#1 tailz

 
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Posted 08 September 2006 - 10:17 PM

It's possible some of the foods I'm reacting to are from the Lyme and Bartonella my new doc suspects I have. He also wants to run another blood test because he thinks they missed subclinical hyperthyroidism.

It's not looking good. I read the choices are meds, radioactive I treatment, or surgery. Anybody on here have experience with Grave's to give me a list of pros and cons to each treatment? How has the Grave's affected you long term? Thanks...
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#2 ravenwoodglass

 
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Posted 09 September 2006 - 06:30 AM

It's possible some of the foods I'm reacting to are from the Lyme and Bartonella my new doc suspects I have. He also wants to run another blood test because he thinks they missed subclinical hyperthyroidism.

It's not looking good. I read the choices are meds, radioactive I treatment, or surgery. Anybody on here have experience with Grave's to give me a list of pros and cons to each treatment? How has the Grave's affected you long term? Thanks...



How long have you been gluten-free? If it has not been long I would monitor my thyroid levels for a while before doing anything drastic. Untreated celiac can mess with your thyroid levels. They may stabalize on their own after your body heals sans gluten. Hopefully the new test he runs will tell you more but if it is at a subclinical level your doctor may also want to take a wait and see approach. I know others on the boards have had thyroid issues, mine like yours were always the subclinical results, and hopefully they will be more helpful.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Nancym

 
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Posted 09 September 2006 - 08:43 AM

Yow, are they talking RAI and surgery already? Graves often goes into remission and you don't need to treat it. Basically what they do is suppress the thyroid with drugs and wait it out. If you're going gluten-free then you that will probably help too. I know of someone who claimed she ate lots and lots of goitrogenic foods and it made her Graves go into remission. Goitrogenic means "against thryoid" so it is food that neutralizes the thyroid hormone. Soy, cruciferous veggies, turnips, that sort of thing. Not sure I really believe you could eat enough of those to make it work though.

I rushed into RAI and rather regret it now. That was pre-Internet era and I didn't really know all my options. My regret stems from my feeling that taking synthetic T4 is not as good as having the full complement of thyroid hormones like calcitonin, T1-T7 and whatever else it pumps out. So don't rush to rid yourself of it.

I tried Armour thyroid but I didn't like it. It made me hyper.
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#4 Ruth52

 
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Posted 09 September 2006 - 02:00 PM

I was diagnosed with Graves Disease in 2004 and treated with medication. At the time I was given the choice of RAI, surgery or medication, luckily the surgeon I saw suggested that I try medication first to see if the GD would go into remission.

I stayed on the medication for 14 months and now have normal thyroid levels. I know of others with graves disease who have gone on and off medication for years and have resisted RAI.

My GP is amazed that I have not relapsed especially seeing how sick I was when I was diagnosed. I firmly believe that my thyroid is staying in remission now because I am now eating gluten free; I don't have a diagnosis for celiac disease (except positive response to gluten challenge) but I have one for graves disease. Which disease came first? My guess is that the gluten intolerance came first.

From my experience I would be very reluctant to have the RAI. Medication does work and if celiac disease/gluten intolerance is also a possibility, a change of diet could also help. When you have thyroid blood tests make sure they test TSH, Free T3 & Free T4.
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#5 SueC

 
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Posted 10 September 2006 - 07:18 AM

My 4 year old was diagonsed with Graves disease a couple of weeks ago. We tried the methimazole but it made her really sick! She is having her thyroid removed this week to get her under control. Her thyroid levels are very high and her resting heartbeat was 130+. I would definately try the medication first but know that not everyone can tolerate it. I don't know if it is because she is so young or not but she was hospitalized with swollen and painful joints and a terrible rash, all due to the medication.

Apart from the medication you can do radioactive iodine or surgery. They both result in the same thing. Removal of the thryoid gland. I choose not to give my child radiation because she is so young but that is the preferred method today. It is quick and painless but lots of radiation involved. If she was older we would probably have done that.

Surgery....well.....it's surgery..with all the complications that go along with it. The other risks are accidental removal of the paratyhroid glands that regulate your calcium levels and possible damage to the laryngeal nerves. Make sure your surgeon has done lots of these procedures!

So you do have choices, just don't ignore it..you need to do something as untreated Graves disease is very hard on your body. It might go into remission with the medication but that is not the expected outcome. I hope you feel better soon and are not faced with the choices we were. Good Luck to you.
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Sue

Diagnosed April 2005 via bloodwork and endoscopy

4 year old daughter diagnosed March 2006 via bloodwork and endoscopy
She was completely asymptomatic

4 year old also diagnosed with Graves disease Sept 2006

#6 Ruth52

 
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Posted 10 September 2006 - 03:16 PM

I hope everything turns out well for your daughter, she is so young and must feel absolutely awful.

I was very aware while I was on the medication that it could cause adverse reactions. If the medication had not worked for me I would have had surgery. I'm not sure about RAI - from what I have been told radiation will eventually kill the thyroid but that does not stop the body producing the thyroid autoantibodies that cause thyroid disease.

Anyway at the moment I am still in remission and so it's a decision I don't have to make.

My thoughts and prayers are with you and your daughter.
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#7 SueC

 
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Posted 10 September 2006 - 03:26 PM

Thank you Ruth. I wish she could have stayed on the medication. I am happy it worked for you. We were hoping for remission when we were first told about the methimazole but even then we were told it was uncommon. You are very fortunate. Thanks for your kind thoughts.
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Sue

Diagnosed April 2005 via bloodwork and endoscopy

4 year old daughter diagnosed March 2006 via bloodwork and endoscopy
She was completely asymptomatic

4 year old also diagnosed with Graves disease Sept 2006

#8 Ruth52

 
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Posted 10 September 2006 - 11:38 PM

The rash that SueC is talking about will have been as a result of her daughter taking Methimazole. A bad reaction to the drug will cause aching joints, a rash and a sore throat, I think this can happen because, in large doses, the drug does something with the white blood cells.
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#9 Random Guy

 
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Posted 12 September 2006 - 06:08 PM

i've had graves for 9 years
i've been on tapazole since diagnosis with the expection of 2 possible remissions which didn't last
i've been saying NO to RAI for the past 7 years
tapazole keeps me feeling great
i'm on 2.5 mg /day now - with normal thyroid test results
who knows, maybe remission?

i've been gluten-free for 9 months now
i asked my endo if going gluten free might help my graves into remission
his answer was that it's an interesting question, but no studies have been done

why not?

my plan is to avoid RAI. My endo thinks i'm making a wrong decision. but it;s my decision, and he respects that

good luck
rg
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#10 georgie

 
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Posted 03 October 2006 - 02:36 AM

I have Hashimotos Thyroid which is different to Graves but have read others and they all say 'NO RAI' unless its for cancer. I take Armour and LOVE IT !! So natural and you feel so good. Most Drs don't know how to prescribe and get the dose all wrong. If you have weak adrenal function you need that treated as well.

www.stopthethyroidmadness.com
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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!!!

#11 happyzot

 
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Posted 12 October 2006 - 10:27 AM

[/i][/b]
Hi,
I was diagnosed with Graves and Thyroid Eye disease in 2005. I was in the thoes of every mistreatment known to medicine and desperate and certainly not thinking right because of the thyroid storm that came on. I only learned after the fact that nearly a third of the people in severe thyroid storm die from it. I couldn't find verification of the facts, but I certainly felt like it.

PLEASE take the opportunity to educate yourself and don't do the RAI or Surgery unless you have confimation of cancer. These procedures cannot be reversed and they mess you up so badly. I'm not sure which came first the chicken or the egg Graves or Celiac but I know my hormones are a mess and I just now 18 months and 5 doctors later finally found some one who knows what the heck he is doing.

I would be happy to share my links with you to help you learn more, if you would like them, just email me off list: KFulbright@aol.com I'll help in anyway I can. That is now my goal, to help as many people as I can who may be suffering from ignorance and mistreatment by the medical community and endocrinologists.

You are not alone!!!
Karen
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