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orphans_mom
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« on: November 13, 2007, 05:47:29 PM »

Does anyone have any experience with Graves Disease?
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Orphans_Mom
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« Reply #1 on: November 13, 2007, 05:52:13 PM »

I don't, but I'm sure someone on this site will be able to talk with you.

Hang in there.    O0
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silverhead
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« Reply #2 on: November 20, 2007, 10:50:52 AM »

Sorry I did not find this sooner, My daughter has Graves and has had all kinds of problems that go with it, RA is the most prevalent one, of course she had her Thyroid destroyed via Radioactive Iodine right after the diagnosis, then the episode with the medication Enbril that caused necrosis of the fingertips of her left hand (her dominant hand) ended up having the tips of her thumb and forefinger amputated, after this her Doc's finally took her off Enbril and the symptoms disappeared (this was before the cautions about Enbril causing necrosis were in place, but no legal recourse) she is on Prednisone (horrid medicine "the good news is the pred is working, the bad news is the pred is working") and now uses Humara, she self injects this like Enbril, but so far no bad side effects, and a host of other pills, still works full time, but thankfully her employers understand her problems and give her great leeway when something goes wrong and she needs time off, if I can help in any way let me know.....
Tom
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Sluff
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« Reply #3 on: November 20, 2007, 12:42:46 PM »

For those who have never heard of Graves disease.

National Graves' Disease Foundation
 
Frequently Asked Questions
About Graves' Disease

 What is Graves' Disease?

The leading cause of hyperthyroidism, Graves' disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).

Facts
Graves' disease occurs in less that 1/4 of 1% of the population.
Graves' disease is more prevalent among females than males.
Graves' disease usually occurs in middle age, but also occurs in children and adolescents.
Graves' disease is not curable, but is a completely treatable disease
 
Symptoms
Fatigue
Weight Loss
Restlessness
Tachycardia (rapid heart beat)
Changes in libido (sex drive)
Muscle weakness
Heat intolerance
Tremors
Enlarged thyroid gland
Heart palpitations
Increased sweating
Blurred or double vision
Nervousness & irritability
Eye complaints, such as redness and swelling
Hair changes
Restless sleep
Erratic behavior
Increased appetite
Distracted attention span
Decrease in menstrual cycle
Increased frequency of stools

 Who develops Graves' disease?

Although Graves' disease most frequently occurs in women in the middle decades (8:1 more than men), it also occurs in children and in the elderly. There are several elements contributing to the development of Graves' disease. There is a genetic predisposition to autoimmune disorders. Infections and stress play a part. Graves' disease may have its onset after an external stressor In other instances, it may follow a viral infection or pregnancy. Many times the exact cause of Graves' disease is simply not known. It is not contagious, although it has been known to occur coincidentially between husbands and wives. Of research importance, the Graves' gene in DNA has not yet been identified.

How is Graves' disease treated?
There are three standard ways of treating Graves' disease. Choice of treatment varies to some degree from country to country, and among particular physicians as well. The decision should be made with the full knowledge and informed consent of the patient, who is the primary member of the treatment team. The selection of treatment will include factors such as age, degree of illness, and personal preferences. Generally speaking, from least invasive to most invasive, the treatments include:

Anti-thyroid drugs which inhibit production or conversion of the active thyroid hormone; Radioactive iodine (I-131), which destroys part or all of the thyroid gland and renders it incapable of overproducing thyroid hormone; or
Subtotal thyroidectomy, in which a surgeon removes most of the thyroid gland and renders it incapable of overproducing thyroid hormone.
The first treatment is about 20-30% effective, and the latter two treatments result in about a 90-95% resolution rate of the disease. In a few cases, the treatments must be repeated. In all cases, lifetime follow-up laboratory studies must be done, and in almost all cases, lifetime replacement thyroid hormone must be taken.

Are there any alternatives to these treatments of  Graves'  disease?
There are a number of things that you can do to assist your body in healing. However, the state of science as we know it indicates there is no "natural" way to "cure" Graves' disease. For instance, although there are no specific foods that will permanently change your thyroid function, the more healthy, nutritionally dense foods you eat, the better your body will be able to fight against infection and further insult. Equally, many of the treatments like acupuncture, exercise, meditation, and various mind-body therapies may provide comfort measures and relief, but are not a substitute for standard medical treatment. Be sure to consult and collaborate with your physician when embarking on additional therapies. There are many studies of other auto-immune diseases that indicate that the more input and control a patient has in their care, the more rapid their recovery will be. It is of interest to all who are hopeful of more, effective additional treatment models in the future that the National Institutes of Health are trying to adequately research and evaluate the hard data of alternative therapies.
 
What are the complications?
Graves disease usually responds to treatment, and after the initial period of hyperthyroidism, is relatively easy for physicians to treat and manage. There are some exceptions to this, and for some, treatment and subsequent stabilization are much more challenging, both to the patient and the treating team of physicians. The more serious complications of prolonged, untreated, or improperly treated Graves' disease include weakened heart muscle leading to heart failure; osteoporosis, or possible severe emotional disorders.
 
Where can I get more information?
The NGDF is a lay organization that provides patient education and support. Membership entitles you to our newsletter, bulletins, discounts at our annual national conference and contribute to the continuation and availablity of the Foundation to others with Graves' disease. All our materials are prepared by experts in their field, and carefully monitored for accuracy. The information is not a substitute for medical care. For more information, send a 9 X 12 --inch self addressed, stamped ($1.01) envelope. You will receive a sample newsletter, sample bulletins, a complete list of publications and applications. If you join now, please allow six to eight weeks for processing. All membership dues and contributions are tax-deductible.

Copyright © 2000, National Graves Disease Foundation. All Rights Reserved.


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okarol
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« Reply #4 on: November 20, 2007, 03:06:13 PM »

I don't have any experience, but I found this recent news article

Body attacks itself in Graves' disease

United Feature Syndicate
Monday, November 5, 2007


Q: What is Graves' disease?

A: Graves' disease is the most common cause of hyperthyroidism, an overabundance of thyroid hormones in the body. Your thyroid gland produces these hormones, which control all aspects of your metabolism, including your heart rate and how quickly you burn calories.

Graves' disease was named for Robert Graves, the Irish physician who first identified it.

It is an autoimmune disorder, which means the body's immune system mistakenly attacks the body's own cells rather than protecting them from outside invaders.

In Graves' disease, the immune system produces substances that stimulate the thyroid gland to make too much thyroid hormone. The disease runs in families and occurs more often in women, usually between the ages of 20 and 50.

Sometimes, but not always, the thyroid gland enlarges and may protrude from the neck to form what is known as a goiter.

If the goiter is large enough, it may feel lumpy. But the size of the gland doesn't necessarily predict how much hormone it will produce.

For instance, some people have barely enlarged thyroid glands that put out enormous amounts of hormone. Others have fairly big goiters that overproduce thyroid hormones by only modest amounts.

Excess thyroid hormone can trigger a wide range of symptoms. The prefix "hyper-" can mean "above, over and excessive" or, as a word, "high-strung and keyed up." Both definitions describe the effect hyperthyroidism has on the body.

Because the condition speeds up metabolism, body temperature rises. So people who are hyperthyroid often feel warm. Their sweat glands tend to overproduce, so the skin is warm, moist and flushed. They also may feel extremely hungry yet still lose weight. The overactivity of the digestive system can lead to frequent, loose bowel movements.

Other symptoms include a racing heart or abnormal heart rhythms. Hand tremors, which result from overstimulated nerves, also can occur. People with the condition also may feel weak, tired and anxious or irritable. Graves' disease also can cause the eyelids to retract, which makes the eyes appear to bulge or stare dramatically. The eyes also may be puffy and watery.

Graves' occasionally improves on its own, but most patients need treatment. Therapy focuses on two goals: improving symptoms and slowing the thyroid's production of hormone.

Symptoms such as rapid heart rates, tremors and nervousness are treated with medications known as beta-blockers, such as propanolol (Inderal). For anxiety and insomnia, doctors may prescribe diazepam (Valium), lorazepam (Ativan) or a similar medication.

To stop the thyroid from producing too much hormone, there are three possible treatments: antithyroid medications, radioactive iodine and surgery.

Many patients with Graves' disease begin treatment with an anti-thyroid medication, such as methimazole (Tapazole, Thiamazole) or propylthiouracil (sold as a generic). Once thyroid hormone levels have come down to normal, a person can either continue daily anti-thyroid medication or choose radioactive iodine treatment.

Radioactive iodine is given by mouth. Most specialists recommend a large-enough dose to stop the thyroid from producing any hormone at all. This requires taking thyroid-replacement medication daily for life. Because people who receive radioactive iodine therapy temporarily store a small amount of radiation in their thyroids, they need to avoid prolonged contact with children and pregnant women for several days following treatment. Radioactive iodine is concentrated in breast milk, so women must stop breast-feeding if they choose this therapy.

Surgery for Graves' disease is rarely done today. However, people with very large goiters are less likely to respond well to anti-thyroid medication or radioactive iodine. They may have a better outcome if most of the thyroid gland is removed surgically.

Patients with eye signs of Graves' disease may be given eye drops to keep the eyes moist and tinted eyeglasses to protect the eyes from sun, wind and dust. Some benefit from anti-inflammatory medication.

It can be complex, and doctors often call on endocrinologists to plan and direct therapy. But in most cases, treatment will prevent Graves' disease from having grave consequences for health.

The Harvard Medical School Adviser is researched and written by the faculty and staff of Harvard Medical School. Visit www.health.harvard.edu/adviser.

http://www.charleston.net/news/2007/nov/05/body_attacks_itself_graves_disease21063/
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
orphans_mom
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« Reply #5 on: November 24, 2007, 03:48:04 PM »

Thank you all very much.

Silverhead - I was wondering if your daughter is a dialysis patient? My husband has both Graves Disease and all the problems/symptoms that go with it. However, he also has acure renal failure.  Since he has been so sick they have not been able to  destroy the thyroid.

Diagnosed with Graves on 6/5 - Acute Renal Failure and dialysis 8/12.

Anyone out there with both problems?
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Orphans_Mom
Huntington, WV
Caregiver, Husband started dialysis 8/12/07
silverhead
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« Reply #6 on: January 03, 2008, 03:10:52 AM »

I apologize for not seeing this sooner - Sherri's kidney function is normal at present, but we worry about her because kidneys can be affected so easily with Graves.......
Tom
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