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Thyroid and Graves Disease

The TVClubHouse: General Discussions ARCHIVES: 2005 Dec. ~ 2006 Feb.: Health Center: Thyroid and Graves Disease users admin

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Kappy
Member

06-29-2002

Thursday, August 18, 2005 - 4:19 pm   Edit Post Move Post Delete Post View Post Send Kappy a private message Print Post    
People were discussing Howie (from BB) and his problem with his thyroid. It seemed like more then a few of us might be dealing with similar things and so I decided to start a thread for it.

Graves runs in my family and I had to deal with it about 4 years ago. My thyroid was way hyper and the doctor chose to give me the RAI treatment for it. He then decided not to give the thyroid replacement meds for at least 6 months ~ don't ask me why. I won't even go into the problems caused by that as it would take pages.

Before the RAI, when my thyroid was working on overdrive, I gained weight while my brother who was in the same situation lost it. After the RAI treatment, and after we had both been put on synthroid, his weight went back to normal and mine continued to increase. After the RAI and before I was put on synthroid, my appetitite and metabolism were zero and I barely ate but I was still putting on about 3-4 lbs. a week. The worst part about it was what it did to my muscles. After the meds were balanced out, I began WW not to lose weight but to be able to maintain where I was and not gain anymore.

After 4 years of this, I have come to accept my 'newer' body but in the beginning it was difficult running into co-workers and old friends who had not seen me in 5 months because most did not recognize me. I would literally have to reintroduce myself to people I had known for 10-12 years and then emotionally accept the shock in their faces when they realized it was me inside there.

Anyways, I do think this problem effects women very differently from how it effects men, especially if they are in their 40's-50's which makes me think that our changing hormones have something to do with it even though that isn't taken into consideration by doctors.

If I had to give advice to others dealing with Graves, I would tell them to insist that their doctors first try to deal with it from the opposite direction as opposed to using the RAI treatment to kill off the thyroid. My doctor now admits that I am one of that very low percentage that this treatment doesn't work well for and yet it's a little too late now, isn't it?!

Anyways . . . here is a place to vent, discuss, whatever!

Urgrace
Member

08-19-2000

Thursday, August 18, 2005 - 4:57 pm   Edit Post Move Post Delete Post View Post Send Urgrace a private message Print Post    
Kappy, I've been on synthroid for a little over a year now. I've been listening to Dr.Roby from Houston, Tx on television in the middle of the night around 2am Central talk about menopause, weight control and thyroid, and the one thing I am sure of is that you must exercise. But the kind of exercise you need is mild. For instance walking at a leisurely pace, swimming, bike riding, etc. not running! Eating once a day is the best way to gain weight. Your body needs nourishment and seeks it. If there is no immediate source, your body begins to wear away on muscle tissue - NOT FAT. Eating three healthy meals and non-fattening snacks two or three times a day will help you lose weight. Of course water is essential.

My sister has Graves. She had thyroid, gall bladder, and pancreas problems all at the same time, and the dreaded weight gain. Because the doctors could not diagnose her problems, she nearly died on three different occassions. Seems a gall stone lodged near the pancreas and they ended up removing it. Now she also has diabetes.

Graves disease is not something I fully understand.


Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:06 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
I don't either, Gracie, so am posting a couple of things to educate us.


Source: Ivanhoe.com
Reported June 24, 1999
Graves' Disease

GRAVES' DISEASE


Television News Service/Medical Breakthroughs
©Ivanhoe Broadcast News, Inc. February 1999



About 13 million people in the United States have a thyroid condition. Although many are not as mysterious as Graves' disease, they still go misdiagnosed. Graves' disease is not as frightening as it sounds.

Sheryl Webb, once a nurse, was 46 when she found out she had Graves' disease. Yet, it was a mystery to her. "I'm a nurse by background, and I knew of this disease but just did not key into it," she says.

Often the first noticeable sign is eye protrusion. Famous people with Graves' include Barbara Bush and Olympic gold-medalist Gail Devers, who says, "I had it in 1988, and it took them two-and-a-half years to actually discover what it was."

Graves' often goes undiagnosed in athletes because it can mimic sports-related conditions like over-training or chronic fatigue. Symptoms include weight loss, irritability, changes in menstruation and heart palpitations.

Kimberley Bourne, M.D., an endocrinologist at Florida Diabetes Center in Orlando, explains the mystery of Graves' disease, "Your body makes antibodies against the thyroid, and those antibodies will stimulate the thyroid to be overactive."

The thyroid gland releases hormones into the blood that affect metabolism, body temperature, muscle tone and vigor. "Almost every organ in the body is affected by the thyroid, and so that's why the symptoms are so diffuse and yet non-specific," says Dr. Bourne.

Graves' is treatable and can be easily diagnosed during a physical examination. Sheryl says, "Have a good outlook. Be positive, and I believe that's true with anything." She has a healthy new outlook since Graves'. She's back in school for a psychology degree.

Graves' disease is four to eight times more common in women, especially between the ages of 20 and 40. If you have symptoms, it's also a good idea to research your family history, as it tends to be hereditary.

If you would like more information, please contact:

Gland Central

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:07 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
graves disease pic

Eye protrusion typical in Graves


Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:12 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com


Protecting the Eyes of Graves' Patients


#1730
Television News Service/Medical Breakthroughs
©Ivanhoe Broadcast News, Inc. April 2001


(Ivanhoe Newswire) -- Graves' Disease in an autoimmune disease that attacks the thyroid gland and the tissues of the eye. The disease is characterized by bulging eyes that causes the eye to be pushed out and the lid pulled down. While the change in the eye causes cosmetic concerns, it can also lead to tearing, light sensitivity and risk of infection. Now, doctors have a new surgical approach.

When your sons are athletes, the proud moments can bring tears to your eyes.

But for Jeannette Moore of Philadelphia, Pennsylvania, Graves' Disease was causing her eyes to water all the time. Watching a game for hours was a real struggle.

"If I would go out and there was a breeze I would start to tear," Jeannette said. "I would just start to tear and it would just start to feel irritated making you want to rub it."

The condition causes eye muscles to enlarge and tighten. Eyes appear to bulge and, in Jeanette's case, the bottom lid flips inside out.

"What you need to do is cut the muscle off so that it's no longer pulling on the lid," Dr. Marlon Maus, an oculoplastics surgeon at Wills Eye Hospital in Philadelphia says. "But you need to put something in between, some pieces of material that are going to prevent it from healing and closing up again."

Surgeons like Dr. Maus used to use pieces of the roof of the mouth to fill the space but that left patients in severe pain. Now, he uses a new option of donor skin called Alloderm.

"It just serves as a scaffolding for your own tissue to grow onto it," Dr. Maus says.

After the surgery, Jeannette was able to close off that part of her life.

"It doesn't tear, it doesn't irritate and it doesn't burn," Jeannette says. "It doesn't bother me at all."

Now whether she's watching her sons or watching the pros, Jeannette can see without interference.

Doctor Maus says he tried to do a study to compare the graft from the mouth with the manufactured skin, but he had to cancel it because no patients were willing to have the older procedure. Alloderm is FDA approved and is also used to repair burns.

If you would like more information, please contact:

MaryAnn LoBianco, Public Relations
Wills Eye Hospital
900 Walnut St.
Philadelphia, PA 19107
(215) 440-3157

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:15 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported November 10, 2004


Thyroid Crusader



SILVER SPRING, Md. (Ivanhoe Newswire) -- Feeling sluggish? It could be your thyroid. One in eight women will develop a thyroid disorder, and most don’t even realize they are sick. One woman is on a crusade to educate women about this often overlooked and important health problem.

Mary Shomon makes sure she gets a daily dose of exercise. It’s important she stays active, because her thyroid isn’t. Ten years ago, Shomon was diagnosed with hypothyroidism, an underactive thyroid. At that point, she didn't even know where the thyroid was.

The small gland in the neck makes hormones that help regulate the body’s metabolism and organ function. After her diagnosis, Shomon began to do some research and discovered millions of Americans, mostly women, were unaware they had a thyroid disorder. "So people need to be aware of the symptoms, and they need to go in specifically and say to their doctor, 'I want my thyroid test,'" Shomon tells Ivanhoe

Symptoms of thyroid disease are fairly common and may include severe weight gain, exhaustion, depression, hair loss, or cold hands and feet. Shomon says, "It's become my mission 'cause I really want to make sure there are not people walking around struggling with these conditions and dealing with a life of chronic illness that is unwarranted."

She’s learned so much about the condition, she’s written several books. Shomon's advice: If you are not feeling up to par, talk to your doctor about your thyroid.

A simple blood test can diagnose the disorder, and it can be treated with medication. According to the National Women's Health Information Center, the most common risk factors for a thyroid disorder are being female, over the age of 40, and if you have a family history of thyroid disease.

If you would like more information, please contact:

Mary Shomon
thyroid.guide@about.com
http://www.thryroid.about.com

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:25 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported August 11, 1999


Thyroid Mystery


THYROID MYSTERY #RX 209
Television News Service/Medical Breakthroughs
©Ivanhoe Broadcast News, Inc. 1997



It isn't menopause...it isn't depression...and it isn't normal. But that's how thyroid disease is often diagnosed. If it's left untreated, thyroid disease can be devastating. The bad news for Peggy Zunzel is her doctor spotted something suspicious in her throat. The good news is she's getting tested to see what it is.

1


Stanley Feld, M.D., Presbyterian Hospital, Dallas, TX: "The people most at risk are women. In fact, one-third of the female population is unaware they have nodules."

The thyroid is a bow tie-shaped gland that's right under your voice box. It controls your metabolism. When it produces too much or too little thyroid hormone there can be problems...and they can be mistaken for depression, menopause, even heart disease. Thyroid nodules can also cause complications. Now, doctors can tell whether the lumps are serious with a simple biopsy.

23


Stanley Feld, M.D.: "With a fine needle aspiration, and a small sampling of tissue, you can tell whether this abnormal growth is benign, or this abnormal growth is malignant."

Thyroid specialists have also established new guidelines to determine when tests should be done.

Stanley Feld, M.D.: "We believe these guidelines are going to decrease suffering to the patient, they're going to increase the outcome of care to the patient, and it's going to decrease the massive burden of health care costs to society."

Thyroid disease can be treated with radioactive iodine to shrink the gland, antithyroid drugs to block hormone production, beta-blocker drugs to block the hormone's effect, pills to give the body the right amount of hormones or surgery for thyroid cancer.

4


If you would like more information, please contact

The Thyroid Society
7515 S. Main Street
Houston, TX 77030
1-800-THYROID

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:43 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported April 20, 2000

Neck Check For Thyroid Cancer


#1118
Television News Service/Medical Breakthroughs
©Ivanhoe Broadcast News, Inc. June 1997



Thyroid is often called "the forgotten cancer" because many people don’t know about it. There are few tell-tale signs.

Gladys Hornbeak went to the doctor after feeling something funny.

Gladys Hornbeak, had an enlarged thyroid: "I just touched my neck one day and it was there. I said, wow this is the size of an egg is what I said."

1


It wasn't cancer, but it easily could have gone unnoticed.

Stanley Feld, M.D., endocrinologist, Endocrine Associates of Dallas, TX: "The patient who has thyroid cancer has absolutely no symptoms except this bump on the thyroid gland."

Call it a stealth cancer. Malignancies on or in a thyroid grow slowly and silently. And there aren't any major risk factors that lead to it.

So thyroid specialists have developed the first-ever home test for thyroid trouble, called a neck check. Much like a breast self-examination, it's easy and can be a life-saver. Grab a cup of water and watch yourself swallow in front of a mirror.

2


Stanley Feld, M.D.: "And if you look at the thyroid gland and see it, you have an enlarged thyroid. If you see a bump on it, then you have to get to the doctor and you have to be evaluated."

3


Thyroid cancer is more common in women, but if a man discovers a bump, the chance it's malignant is much higher.

Lisa Young, has thyroid problems: "Very easy, just put your neck back, you can swallow and you can see it, I can feel it now too."

And there is good news...

Stanley Feld, M.D.: "If it's appropriately treated, patients can be cured. We have 500,000 survivors of thyroid cancer in this country."

The bad news is doctors estimate there are three million people who have thyroid cancer right now, and last year, only 17,000 of them were diagnosed and treated.

If you would like more information, please contact:

American Cancer Society
(800) ACS-2345

Thyroid Foundation of America
(800) 832-8321

Stanley Feld, M.D.
Endocrinologist
Endocrine Associates of Dallas
5480 LaSierra Dr.
Dallas, TX 75231
(214) 363-5535

Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 5:59 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported June 24, 1999


Menopause or Thyroid?


#RX 350
Television News Service/Medical Breakthroughs
©Ivanhoe Broadcast News, Inc. 1997



Lots of things change in a woman's body at menopause, but few women -- and not enough doctors -- check for an easily treatable disease that can mimic menopause.

1


Patricia Micek was sure she was starting menopause. "When I started, I did not have hot flashes, but I had palpitations."

A common enough menopause symptom. But Micek had no idea that, along with many other familiar signs of "the change," her palpitations could also signal thyroid problems.

2


Michelle Warren, M.D., gynecologist and endocrinologist, Center for Menopause, Hormonal Disorders and Women's Health, Columbia Presbyterian Medical Center, New York, NY, "It's very important when you see patients at menopause to make sure they don't have other reasons for their symptoms. Thyroid in particular is a big masquerader."

For example, if heat bothers you unexpectedly and you have trouble sleeping, it could be an overactive thyroid. Extreme fatigue, joint pains or hair loss could signal an underactive thyroid. The same blood sample that tests for low estrogen levels can determine thyroid function.

34


Michelle Warren, M.D., "It's called a TSH level or in association with something called a thyroid T4 level."

The test is inexpensive and very accurate -- except when a woman is already taking hormone replacement.

If you think you're menopausal, and your physician doesn't check for thyroid changes, ask for the test -- or find another doctor.

If you are already on hormones and your menopausal symptoms aren't responding, that's another signal it may be your thyroid that's at fault.

If you would like more information, please contact

Michelle Warren, M.D.
Center for Menopause, Hormonal Disorders and Women's Health
Columbia Presbyterian Medical Center
16 East 60th Street
New York, NY 10022
(212) 326-8548

Kappy
Member

06-29-2002

Thursday, August 18, 2005 - 6:16 pm   Edit Post Move Post Delete Post View Post Send Kappy a private message Print Post    
Thank you, Herckle, for all the info you posted.

I discovered Mary Shomon very early in all of this. And yep ~ those were my eyes. I also had the hand shakes and my muscles would give out at times and I would drop things or my knees would give out on me. It was all very unnerving to say the least.

I'm a huge water drinker and have always been a fitness and exercise nut. It's just more difficult now because I have had huge muscle problems ever since the RAI. But that has also caused me to realize how important it is for me to keep moving because I literally feel like I aged 20 years in one month from the RAI and I'm scared of what would happen if I did stop exercising. The only point at which I stopped eating 3 meals a day was during the time that my thyroid was dead and the doctor still hadn't prescribed any replacemnt medication. But as I said, I don't want to go there as I could go on for pages as to what all happened. Suffice to say he's lucky I don't believe in lawsuits.

The interesting thing about Graves is that even though it mainly effects women, I've been told that the thyroid hormone replacement medications were only ever tested on men. I still stick by my opinion that there's a huge problem with the meds that are available. One size does not fit all and alot of doctors don't seem to really care.


Herckleperckle
Member

11-20-2003

Thursday, August 18, 2005 - 6:20 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Kappy, yw! What is RAI?

Texannie
Member

07-16-2001

Thursday, August 18, 2005 - 6:29 pm   Edit Post Move Post Delete Post View Post Send Texannie a private message Print Post    
OMG!!!!! it's so true, menopause isn't thyroid disease and vice versa! btdt! LOL thankfully i have a good endo who is treating all of my hormonal imbalances.

Nynana
Member

05-31-2005

Thursday, August 18, 2005 - 7:30 pm   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Herckleperckle, you posted some good info. Thanks.

Here is a site of my friends eye disease. She had moderate eye disease before RAI, 2 weeks later, well you will see how bad her eyes got.

LINK

RAI is RadioActive Iodine. It take millicurries of a radioactive substance to the thyroid to kill it, it takes years to kill it off <not months or weeks like some doctors believe.

The bulk of the radioactive junk goes to the thyroid but some also goes to the reproductive organs, the breast tissue, the stomach, kidneys and adrenals. It is a barbaric treatment that should be outlawed.

When we have Graves Disease or Hashimoto's, our thyroids are NOT sick, it is our immune systems that have gone wacky. RAI actually worsens things for us and leaves us on a life-long dependancy of replacement hormones.

Most doctors don't do the proper labs, which are the FREE T3 and FREE T4, which are actual thyroid levels, they look at the TSH which is a test of the pituitary and dose on based on this.

There is a lot to learn when we have thyroid disease. Unfortunately far to many people are told it is not big deal...friends when they hear you are hyper, "oh no wonder you are so skinny" and when hypO, "oh no wonder you keep gaining weight"...and doctors, when you go in in pain, high cholesterol, feet and joints ache to tears, depression sets in...they continue to to say "it's not your thyroid" when often times it is.

I have worked with people over the last 6 years that have been dx with CFS, bi-polar, IBS and other diseases and when they finally got their thyroids under control, all their other symptoms went away. It won't happen every time but it will happen much of the time.

Thyroid hormone is in every cell in our bodies. It affects every system in our bodies from reproductive to neurological. It needs to be screened for every year with our yearly tests. Hopefully those of us who advocate and teach thyroid education and becoming proactive in our health care are making a difference.

Here is a url for one of the best educational sites on the web that is by patients, for patients. Hope some of you with thyroid will come visit us there.

LINK

If anyone does have questions, ask here or email me at luckystrike928@yahoo.com , it is my thyroid email addie. I have been a thyroid patient advocate for 5 + years now.

Jody

Herckleperckle
Member

11-20-2003

Friday, August 19, 2005 - 8:41 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
OMG, Nynana, I had no idea it could get so bad! And thanks for explaining what RAI means. I am so happy for your friend that she is back to normal. Wow! I am very glad you came here to post. And I will know where to go should I ever have to battle this issue (knock on wood I won't).

Landi
Member

07-29-2002

Friday, August 19, 2005 - 9:55 am   Edit Post Move Post Delete Post View Post Send Landi a private message Print Post    
i haven't talked much about my mother. she was diagnosed with graves disease 12 years ago christmas. she was skin and bone. 89 lbs. and she would say "i eat and eat! i ate a half gallon of ice cream the other day, and lost a pound!" she was on one medication after another. her weight went up to 160lbs. she was normally about 105. my mother was a small framed woman at 5'1". in the throes of graves disease she had huge protruding eyes.

now you may have wondered why i say "was" so often. my mother died 8 years ago this july. NOT from graves disease! she died because of the up/down of the thyroid medications, the RAI, and the damage it had done to her heart. she just keeled over her coffee one morning. her heart had given out. i ask that people who have this disease, be proactive in your thyroid care. don't hold back your questions to your physicians.

thank you.


Herckleperckle
Member

11-20-2003

Friday, August 19, 2005 - 10:24 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
I am so very sorry, landi. I knew you had lost your mother, but I didn't know how. The 'cure,' from what everyone has said, sounds unrefined and ultimately barbaric. I guess, though, it is partly because--as Nynana said--"the thyroid hormone is in every one of our cells."

landi, that means you need to watch it, as it sounds as though this is a hereditary condition. I am sure you are, though.

So the dx of thyroid problems is no small thing.

All of this freaks me out because some of the information in these articles that I posted, at the least, are very misleading. So why don't doctors routinely do the tests Nynana mentioned? Are people going to PCPs for care rather than endocrinologists? Is the field so new that docs aren't up to speed? Or are they in disagreement or what? If the condition is as common as it is, I don't understand the prehistoric nature of the treatment!

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 11:13 am   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Landi,

I am so very sorry you lost your Mom :-( Especially when it could have been prevented with proper labs and proper care...these are the things that just tick me right off. I have read the story of a 24 yo man who was dx, rushed into RAI and died 3-4 weeks later...all the doctors said it wasn't because of the RAI. I disagree <along with hundreds of others of us>, that time he died because they rushed him into RAI without first bringing his numbers down...he went into thyroid storm during the *dumping* process and caused cardiac arrest. This happens more than we are aware of, that I am sure.

With your Mom, her doctor probably tested her once a year, using just the TSH, and if her numbers came back *anywhere* in the *normal* range, the doctors refused to increase her replacement hormone.

I went through that the first 4+ years after RAI. I gained 100 pounds <and when you are 5'1" that is another person>...I lost over half my hair, I couldn't get make my mind work for nothing. One day I was trying to tell my husband something about my car keys, they were sitting right there on the table...I couldn't remember what they were called, finally I screamed those damn things that you turn on and the car will run...I was terrified I had alzheimers and I was in my 40's then!

The worst thing from being kept in hypOhell was the horrible horrible depression. It got so bad that I had decided to take my own life, something I NEVER would have considered. I was making my plans, writing my good-bye letters to my family members...when I got to the letter for my 3 year old grandson, I couldn't do it, I just sat and cried for hours. That is the day I began my educational journey into the world of graves and thyroid and I have not looked back since.

I have fired 2 primary's, 2 endocrinologist and an opthalmologist. I have wonderful doctors now who work *with* me, know that I do research before bringing them any new info and that I am going to push the envelope.

That is what I do today, but, I ended up with slow digestion that is looking like it is going to be permanent, I have had a heart attack, my cholesterol is very high and I will NOT take the perscription drugs for it. I still have 100 pounds to lose. I use to worry about the cancer risk from the RAI, I gave up on that, if I get it I get it, I can't turn back the hands of time. There are no do-overs.

I know what it did to me, and I believe everything you shared that it cost your Mom, and cost you with the loss of your Mom and I'm betting the doctors will still say "it wasn't her thyroid".

Cher
Member

08-18-2004

Friday, August 19, 2005 - 11:28 am   Edit Post Move Post Delete Post View Post Send Cher a private message Print Post    
Hugs Landi to you and thank you for sharing your story. You never know when one person comes forward with information and how it may really help another person.

Herc - you are so wonderful to research and provide information you find on all these subjects, I know I sure appreciate it.

I don't have Graves disease but have a very underactive thyroid that continues to make me gain weight, and have had this problem for about 20 years now. When I found my birthmother in 1992 I found she had an underactive Thyroid also, she is not on a high dose as I am though at this time. The most recent blood test showed the medicine needed to be raised again. Constantly up up up. I walk everynight not along time but some, and I don't constantly eat alot, but I shouldn't eat hardly at all if I ever want to get rid of this weight.

Thanks for letting me share some of my story and I wish you all good health in years to come.

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 11:33 am   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Herkle,

>>>All of this freaks me out because some of the information in these articles that I posted, at the least, are very misleading.<<<

It happens but you know what, it still gets things talked about and makes people think. I get so frustrated with doctors who push RAI and say it is the *cure* for Graves Disease, when there is NO cure. There is a chance for remission if one uses the atds and is monitored properly but doctors don't want to be bothered to do that...it takes time...I believe 3-5 years for long term/permanent remission.

>>>So why don't doctors routinely do the tests Nynana mentioned?<<<

I don't know :-( But I know every person I come in contact with, I tell them to insist that their doctors run at least a TSH once a year. And if we insist, we tend to get our way now because of the HIPAA laws.

This test should be done every single year on every single person, including children. The number of young children now being diagnosed with graves disease and having their thyroids destroyed by RAI <only in the US> is alarming. Young children being dx with ADHD need to be tested for thyroid before being given any drugs for ADHD.

>>>Are people going to PCPs for care rather than endocrinologists?<<<

Actually, I encourage many people to use their primary care docs over endos...once they have begun their educational journey. But the book Thyroid For Dummies by Dr. Alan Rubin, share it with their primaries. If one has a long term relationship with their primary, the two working together will do much better than someone going off to and endocrinologist whose specialty is diabetes and has not learned anything more on treating thryoids than they did in med. school.

I am lucky, I found my current endo in a head and neck center. She doesn't treat diabetes so she has kept up on thyroid issues...but finding endos like her isn't always easy.

>>>Is the field so new that docs aren't up to speed?<<<

I have a friend who is now working with a doctor and she is teaching the doctor how to properly treat his thyroid patients. This doctor has shared some information and much of what he learned on thyroids is the same stuff they taught 50 years ago and not moved forward...this is horribly sad because things have moved forward and the last couple of years so much more new research has been done...granted the research is done in Japan, Europe and Germany but the studies are published for all to read.

>>>Or are they in disagreement or what? If the condition is as common as it is, I don't understand the prehistoric nature of the treatment!<<<

I don't think it is disagreement so much as it is 'standard of care' with the insurance companies in this country. The care here is different from many other places. Unfortunately some are starting to follow the US example.

It is also my personal belief that doctors who push RAI do so for kickbacks/perks from the pharmaceutical companies. Afterall, once we have done this treatment, we are forever dependant on thyroid replacement hormone...the cost of which has tripled since I had my RAI in '96.

There is a book called As Sick As It Gets by Dr. Rudolph Mueller and it is about our sick health care system in this country. He also did a expose of the drug company perks for Prime Time 2-3 years ago. He went into a rest. with a hidden camera and microphone and taped this dinner...it was very eye opening the things he exposed.

He was shunned in his area by other doctors and it continues to this day. I can attest to that because he is my primary care doctor. He continues to fight the good fight trying to get health care for all in this country. He has come up with several different plans to accomplish this. He addresses Congress regularly on this issue. Nothing happens :-( The drug companies and the insurance companies have powerful lobbyists that continue to stop anything from moving forward.

It is standard of care that is hurting us and costing lives that doesn't need to happen. Not just with thyroid either. :-(

Get your thyroid tested every year. Know that lab ranges are all over the place and that if you have a TSH level above 2.50, insist they run the FREE T3 and FREE T4, from there begin research. Pop over to mediboard, it will jump start anyones education into this world.

Have gone on long enough, probably boring you by now :-)

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 11:39 am   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Cher,

>>>I don't have Graves disease but have a very underactive thyroid that continues to make me gain weight, and have had this problem for about 20 years now. When I found my birthmother in 1992 I found she had an underactive Thyroid also, she is not on a high dose as I am though at this time. The most recent blood test showed the medicine needed to be raised again. Constantly up up up. I walk everynight not along time but some, and I don't constantly eat alot, but I shouldn't eat hardly at all if I ever want to get rid of this weight. <<<

What blood test are they doing on you? Just the TSH? Insist they test the FREE T3 and FREE T4 also. If you don't have insurance anyone except NY state residents can go to www.healthcheckusa.com and order the FT3, FT4 and TSH for $75.00 + $12.00 draw fee <much much cheaper than what labs charge us!>. Get these done.

How big is your T4 dose? Does your doctor give you any T3 <cytomel> hormone replacement? It could be that you are not converting the T4 of you synthetic hormone to the active T3 hormone the body needs.

Have you been checked for thyroid hormone resistance? I can't comment on that because I know very little but I do know there is a group of folks dealing with this in the yahoo groups.

Pop over to mediboard, it isn't just a graves disease board. We work with all thyroid issues. There is lots of great information, research links and support for anyone with thyroid issues, whether it be you or a spouse or friend.

http://www.mediboard.com/ubb/ultimatebb.php?ubb=forum;f=1



Kappy
Member

06-29-2002

Friday, August 19, 2005 - 11:58 am   Edit Post Move Post Delete Post View Post Send Kappy a private message Print Post    
Landi ~ I am so sorry for your loss.

Nynana ~ I'm so glad your friend was finally able to get the correct help. This is such a frustrating desease and again, they treat all men and women as if they are the same and I think that is where the problems come in.

I have an endocrinologist through Kaiser whom I have only ever seen in person for 10 minutes at the intial appointment I had with him. I trusted him when he declared that an RAI was the best approach to all of this and there wasn't really enough time to educate myself as to other treatments before having it done.

When I report problems to this doctor (over the phone as he doesn't see me in person) or tell him that I feel my health is now permanently damaged and I will never have the same quality of life as before, he always counters that I would have most likely had a heart attack because of the high rate at which my thyroid was functioning. I then counter that at 5'2" and 60 lbs. overweight, I'm still a prime candidate for a heart attack so what's the difference? And yes, I now have high cholesterol where it was always low before.

It's just a frustrating desease. I actually try to talk about it as little as possible so I can just move on. Thank you, ladies, for all you've shared.

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 1:04 pm   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
>>> trusted him when he declared that an RAI was the best approach to all of this and there wasn't really enough time to educate myself as to other treatments before having it<<<

I trusted my first primary and my first endo too. My endo told me I was the sickest person she had ever seen with this disease. She then told hubby and I that I only had 2 treatment choices, RAI or surgery, then proceded to scare the heck of me over the surgery, the dangers of losing my voice <Me not being able to talk...well that was just unacceptable! LOL>.

She gave hubby and I a time-life video to watch and it made verything seem hunky dorry with the RAI so we said okay. I shold have known when the doctor who came in to give me the meds was covered in lead from head to toe, and handed me a lead container with a vial in it that contained the pill, that this was not such a good idea...but it didn't sink in. Then when I put that *innocent* looking capsule in my hand and started asking him questions while waving my hands around and he got this panic look on his face that *REALLY* wasn't a good idea I should not have done it...when he pushed my husband outside the doore and he was exiting while screaming TAKE THE DA,MN PILL that I should have run for the hills...but you see, when we have hyper brain we don't think clearly. My only thought was 'I ticked off the doc better take the pill'...

I don't understand how it is legal to push a patient or talk a patient into or bully a patient into RAI without first bringing their numbers down to a safe level. Before we can sign any legal documents, we have to be 'of sound mind'. When we are hyper, we are NOT of sound mind. It just isn't right. We are brought up to trust our doctors...not any more. I will never ever do another procedure without researching, asking lots of questions and then making an educated decision...and that decision will be mine and mine alone.

>>> I will never have the same quality of life as before, he always counters that I would have most likely had a heart attack because of the high rate at which my thyroid was <<<

No, you won't have the same quality of life, Kappy, but I promise you, you can put quality of life back into your own life. It is so true that there is power in knowledge! The more you know and understand, the easier it is to begin to heal. I know having Kaiser can be a pain but I have run across several ppl with kaiser who have found great doctors in their area. I think most are in the northern CA area, north of SF, if that helps.

There are things you can do. Pop over to the mediboard link and print up the 101 thread and read it, or print up part of it, it will help you with things you need to know now. And if I can help in any way, in a more private format if that is more comfortable, just email me any time. Just put something about graves or tvch in the subject line.

>>>It's just a frustrating desease. I actually try to talk about it as little as possible so I can just move on.<<<

Yes it is a frustrating disease but I promise you, the more you learn, the better your will feel. The more we know, the more in control we are and that makes a HUGE difference.

Not talking about it and praying to just move on will only work for so long. If your care continues to not be what YOU need, things will just continue to spiral downwards until you hit a point where you feel like you can't crawl out of it. A point where you are on so many medications that don't do a bloody thing for you but satisfy an inadequate doctor that he/she is doing all that can be done, after all 'it's not your thyroid'.

If you do nothing else, bookmark the links for future use and buy the book Thyroid For Dummies by Dr. Alan Rubin. It is usually 14 and change at amazon and if you spend 25 dollars there you do not pay shipping and no sales tax so it really is a savings from buying it locally.

Just know, you are not alone. There are over 15 million undiagnosed thyroid patients walking around feeling horrible and it just doesn't have to be this way.

Feel better Kappy! It is possible.




Cher
Member

08-18-2004

Friday, August 19, 2005 - 2:37 pm   Edit Post Move Post Delete Post View Post Send Cher a private message Print Post    
Nynana, Thanks so much for leaving me with that information. I see the doctor for my A1C the end of this month and will ask him about those other blood tests. I appreciate you giving me the information. Take care!

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 2:45 pm   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Your welcome Cher. With insurance you may also want them to test your TPO antibodies <thyroid peroxidase> to see if your thyroid disease is due to Hashimotos', which will classify it as an autoimmune disease. Something we should all be aware of for our family medical history.

Autoimmune diseases do have a genetic factor and children should not begin vaccinations until age 2-3, once their own immune system has fully developed if there is a history of autoimmune diseases in the family...that includes, parents, grandparents, siblings and aunts and uncles.

That is what my daughter was told when preggers with our youngest grandchild.

Hypermom
Member

08-13-2001

Friday, August 19, 2005 - 4:09 pm   Edit Post Move Post Delete Post View Post Send Hypermom a private message Print Post    
Wow! Lots of Grave's peeps.

I was diagnosed in August 2002 at my yearly physical. My GP told me he was going to have it tested since I had turned 40. He had me go see an endo and I have found her to be very knowledgable and caring. I see her every 4 months and she spends time going through everything with me, and just listening to me. I had symptoms for Grave's for over a year, but at that time, my 14 year old son had been diagnosed with cancer, was going through treatment, and sadly, died. I thought it was stress, but my endo said with everything I had gone through, the stress had elevated my symptoms. I had fine finger tremors, my BP was at 147/90, I couldn't sleep, and I was bouncing off the walls, on top of grieving for my son. She put me on Tapazole and Toprol. Within a week, I had hives from the Tapazole. I then tried PTU. My BP was normal within 3 weeks. My levels started getting better, but I hated how I felt. In November, I asked her about RAI after I had joined the National Graves Disease board and had read books about GD. I didn't like being on the PTU. I had RAI in November, and went hypo in January. I didn't have any problems with the thyroid storm. Muscle cramps, brain fog, etc., was minimal when I went hypo. Started Synthroid and have had it upped 4 times since 2003. However, I have stayed at pretty much the same level with my labs and same doseage since January, 2004. I've seen an opthamologist for a baseline on my eyes, and they have not changed in four years. I did gain weight, and it is slow to come off. But, I've found that exercise helps, and it makes me feel better...it just took awhile for my endo to okay it. There is no history of thyroid or autoimmune diseases in my family. If I had the choice to do RAI again, I would. There are bumps in the road for me, at times. If I go full force or get really stressed, I know that I'll feel like crap for a day or two. I've had to learn to say NO a lot, so that I don't get tired out. My cholesterol was high during my last exam, so I am taking Lipitor now. However, I've also changed my diet and have lost 14 pounds in the past 4 months. Too much Ben and Jerry's didn't help. lol Anyway, that's my story.

Landi, I am so very sorry about your Mom. :-(

Nynana
Member

05-31-2005

Friday, August 19, 2005 - 5:31 pm   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Hi Hypermom,

It could well be that the illness and death of your son is what triggered your graves. My current endo believes it was the death of our youngest daughter that triggered mine.

I went 10 years undiagnosed though, that was rough, by the time I was diagnosed I was positive I had lung cancer, parkinsons and my heart was failing. Your doctor was wonderful to test your thyroid when you turned 40!

As for RAI, I would never do it again. It is a crapshoot on who will do well and who won't. No one can know that ahead of time. Since it isn't our thyroids that are sick, but out immune system, and RAI doesn't address that part of the disease.

I remember when your son died, do you still have that wonderful web site up as a memorial? I loved it when you put it up, an awesome tribute.
I am so sorry for your loss.

Hypermom
Member

08-13-2001

Friday, August 19, 2005 - 9:43 pm   Edit Post Move Post Delete Post View Post Send Hypermom a private message Print Post    
Nynana,

I'm so very sorry about the loss of your daughter and that you have had such a rough time with GD. Losing a child throws your whole world upside down and I know that my health was the last thing on my mind. Thank you about the website. It is still there...the link is in my profile.

My GP is a great guy. Very caring and compassionate. I know there are not many doctors left out there in private practice that spend an hour or more just talking after an exam. He's special to us because he was there when our son was diagnosed. He took a backseat to the ped. oncologist, but he was our cheerleader. He and my endo have a theory about my GD, but we will never know for certain. Before my son was diagnosed, I was with him through every test, including tons of x-rays. I wore the lead gown, but it didn't cover my neck. They both wonder if it wasn't the exposure to radiation that started it. I do know a few children that have survived the cancer that my son had, now have thyroid problems from radiation treatment. Needless to say, my GP and Endo are now very careful when it comes to x-rays, mammograms, etc. for me.

I guess I'm one of the lucky ones then with the RAI. I just feel it was the right choice for me. I didn't tolerate the anti-thyroid drugs well at all, but I didn't want the surgery either.

Kappy
Member

06-29-2002

Saturday, August 20, 2005 - 9:40 am   Edit Post Move Post Delete Post View Post Send Kappy a private message Print Post    
Hyper and Nynana ~ first, I'm sorry for both your losses.

My doctor said as well that a stressful experience in life can trigger Graves. In my case, it runs on mother's side of the family but it seems to have skipped a generation. It's interesting that you brought up the connection to radiation. When I was an infant, they did radiation on me and I received a letter in mid-30's telling me they had found that same radiation to have caused throat cancer in later years and that I was to have my doctor check it out. While I have not developed throat cancer, I do wonder if that could be a reason as to why the meds don't do much for me.

Back to Nynana's 1:03 post - I was given a medication to lower my thyroid levels for 3-4 weeks before they gave me the RAI treatment only I do not remember what the medication was. I was actually feeling really good by the time I went in for the RAI - the tremors had stopped, the constand headaches stopped, the facial sweating stopped and my eyes stopped feeling like they were full of sand. But then I never had a chance to see my doctor in person again so I never really had to chance to ask why we couldn't continue with that treatment. My mother has since spoken with relatives whose 3 kids have GD and taking meds to lower their thyroid levels as opposed to going through RAI. All are doing well. I have also read that some people have success balancing their thyroid level through the zone diet. Either way, I just would have like to have been given that chance.

I spent two years after the RAI reading everything I could find on the subject. I'm one of those people who really believes we can choose to be happy (for the most part) which is one reason I began to accept all of this better emotionally after 2 years of going through it.

Again, thanks for the info and the links.

P.S.: Talk about the brain not functioning right ~ I was giggling when the person came in with their 'space suit' on to give me the pill. He couldn't believe my own doctor hadn't shown up for that and called another doctor in to be there. That doctor asked me if I had my prescription for the thyroid replacement medication. When I said "no, my doctor said he would like to wait for 6 months before giving it to me", you should have seen the shocked look on his face. But again, those red flags just were not registering at the time.

Nynana
Member

05-31-2005

Saturday, August 20, 2005 - 10:36 am   Edit Post Move Post Delete Post View Post Send Nynana a private message Print Post    
Hi Hyper,

Your doctors sound wonderful and like they may know what they are doing with you. So many just discount the hypO complaints and symptoms that are very real to us.

I see your doctors are careful with any thing radiation with you...you may want to suggest a couple of things, at least to your GP. Now that I am in my 10th year post RAI, she orders a thyroid ultrasound every year to watch for nodules that could be malignant or become malignant. She says we will do this every year for the rest of my life. Better safe than sorry :-)

The other thing, I just found this out last fall and had a hard time controling my anger over it. Our family doctor and endo both suggested that my hubby now begin testing his thyroid for hypOthyroidism every 6 months to a year <they differ on how often>. When I asked why, both have said it is expected that the immediate family members are expected to become hypOthyroid at some point after the 10 year post RAI mark of the patient.

I was so ticked, they never told us this before treatment. My hubby now shows some signs of hypO but his levels remain stable, albeit the hypO side of normal. We are lucky that our doctor runs the FREE T3 and FREE T4 to test him and not just a TSH where most hospital labs *normal* range of TSH runs from .030-6.50 to be considered *normal*. Most hospital labs and independant labs have not lowered that 6.5 or 5.5 to the newest recommended value of less than 2.50. It is now being recommended that anything over 2.50 <by many doctors> or 3.04 <recommended by the American Association of Clinical Endocrinology> should be treated as hypOthyroidism.

So one thing to consider is having your spouse tested when you hit that post 10 year mark, or sooner if he begins to show hypO symptoms.


Wendo
Member

08-07-2000

Sunday, August 21, 2005 - 3:44 am   Edit Post Move Post Delete Post View Post Send Wendo a private message Print Post    
I was recently diagnosed with hypothyroidism. Can't say I felt the symptoms per se, but who knows. My doc put me .05 MG of Synthroid. I go in for a follow up Thyroid check in the next month or so.

Thanks for all the info posted, much appreciated.

Hypermom
Member

08-13-2001

Sunday, August 21, 2005 - 11:45 am   Edit Post Move Post Delete Post View Post Send Hypermom a private message Print Post    
Kappy, thank you. I never thought about the radiation exposure, until my GP brought it up. Like I told him, even knowing what I do now, I still would go through it with my son....maybe just cover my throat though. I'm still having my mammogram, as usual. However, if I have to go through a biopsy again, like I did this year, he wants an MRI done instead. He's also limited my dental x-rays.

Nynana, thanks for the info about having DH tested. I never would have thought of that.