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Doctors' Answers to "Frequently Asked Questions" - Grave's Disease

These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

Graves Disease and Hair Loss [posted 1/7/99]
Question: I was diagnosed with Graves Disease in early February, and due to the size of my goiter, etc., decided to have surgery. My surgery was performed June 22 and was successful in that the pathologist report came back as "Graves." However, although I've been told I'm a text book case for Graves, I did not experience any hair loss up until the time of surgery. Since surgery my hair has been falling out daily. I'm thankful I have a lot of hair, but wonder how long this will continue. Will I become bald? Does it have anything to do with the long surgery? My surgery took 6 hours. I am a 37 year-old female, and started taking the synthroid (.0125) approximately one month prior to surgery.

Answer: During hypo/hyperthyroidism, the hair becomes weakened. As the condition is corrected the hair strengthens and begins to grow at its usual rate. However, as the hair gets about 1/4 in length of growth after the condition is corrected(about one month) the weak spot at 1/4 inch manifests itself and the hair breaks. The only way to correct this completely is to grow your hair out completely, but cutting it short will help to reduce the pressure on the weak areas and reduce breaking somewhat.

Graves Disease [posted 11/25/98]
Question: My wife has recently been disagnosed with Graves disease. She was initially taking propranolol and tapazole, but began experiencing side effects to tapazole (itchiness, pain near her liver, etc), and was prescribed PTU instead. She is also off the beta-blocker as well. She is 27, and we are interested in soon having children. Will any drug, or surgery, or iodine treatment affect child-bearing? Which treatment makes sense both in the short and long term? I am very concerned, as PTU has seemingly had no effect on her hyperthyroid symptoms. Also, are heart palpitations and shortness of breath normal? Thanks.

Answer: Heart palps and shortness of breath are common with hyperthyroidism. As to the various options, I would opt for I 131 now as the fastest way to treat the hyperthyroidism and would probably have the fewest long term side effects.

Graves Disease [posted 11/19/98]
Question: Thirteen years ago I had graves disease & had my most of my thyroid removed. The doctor only left a small portion of the thyroid. I started taking synthroid after the surgery. Is it possible to get graves disease again in that small portion of thyroid that I have left? Also, does graves disease harm or destroy nerves or muscles? I was tested for carpal tunnel in my right hand about a month ago. The specialist said there was some signs of carpal tunnel near the palm of my thumb but not real bad. He also said my problem could be a result of having had graves disease thirteen years ago. My family doctor said this couldn't be true and said I definitely had a mild case of carpal tunnel & thought therapy would be a good idea. From the test the therapist did, he knows there is something wrong with the thumb & palm area of my right hand & up my arm. He is not sure if it is carpal tunnel or the results of having once had graves disease, said he would have to read up on graves disease. The three treatments I have had so far have just made my hand & arm more painful, plus I still have the tingling & numbness in my fingers & hand. Still have the pain in my thumb and palm, top of my hand, & up my arm all the way to the shoulder.  I feel as though I am being used as a guinea pig by going through these treatments just to see what works. Could you please send me some information about graves disease? I guess I really don't understand what the disease is except that I once had it. Does it destroy nerves & muscles, can it cause the brain to malfunction at times such as not remembering anything, trying to speak & the words come out wrong? Could I be experiencing problems now because I once had it? I'm at a total loss as what to do, & evidently the doctor's & therapist I have seen don't have a clue. Any information you could send me would be most appreciated. Thank you in advance.

Answer: Grave's Disease is a systemic autoimmune disease. It tends to affect the thyroid and the eyes the most, although some do experience nerve damage and mental status changes. There is also a small percentage of patients who develop myasthenia gravis and other similar autoimmune problems, this may need to be checked occasionally. As to whether the Graves caused the carpal tunnel, there really is no way to know short of a nerve biopsy (not recommended). Since the treatment is the same regardless of the cause, I wouldn't focus on this. PT is the correct start as is nocturnal wrist splints. If this is not effective, you will need surgery.It doesn't sound like your Doctor understands Graves. It might be useful to see an endocrinologist to see if there is any evidence of further progression, probably not, but, one can't say without further testing.

Graves Disease [posted 8/11/98]
Question: I found out yesterday that my best friend's sister has Graves Disease. I was wandering what it is and if she'll live through it. I can't find any information about it and I'm very worried for her.

Answer: Graves Disease is a systemic disease of the immune system . In general, it affects the thyroid primarily, but some patients develop eye finding, myasthenia gravis, cardiomyopathy, and liver involvement. Her prognosis is a function of the other organs involved since the thyroid is fairly easily controlled in general. Find out whether there is eye, heart involvement - these are the difficult parts of Graves.

Graves Disease [posted 8/11/98]
Question: I am a 26 year old female, who has been diagnosed with graves disease for the second time. The last time I had a huge goiter on my neck in which most was surgically removed, but not all of it. Will this ever completely go away? The doctors are worried that my heart may not be able to take anymore stress on it because of the heart attacks the last diagnosis seem to bring on. Other than the graves disease I am a pretty healthy female. Should I worry? How can I get my family to understand what I am going through?

Answer: Graves Disease is a systemic disease of the immune system. It tends to target certain organs for reasons that we do not understand, but probably reflect antigens on the surfaces of the cells. The thyroid and the eyes are usually the organs that rder affected, but the heart etc., can be affected. It is difficult to tell from your inquiry whether you have any decrease in function of your heart from the Graves or the ensuing hyper/hypothyroidism. If the ejection fraction is normal, I wouldn't be too concerned. If the function is decreased (measured by ejection fraction) treatment may be necessary. However, it shouldn't result in a "heart attack". It can result in irregular beats. You need functional tests of your heart to know the "strength". If an echo is normal, I wouldn't be concerned.

Graves Disease
Question: I'm a 39 year old female who was finally diagnosed about a month ago with Graves Disease after suffering symptoms for 10 months. The endocrinologist I was referred to put me on Tapazole, 10 mg tid to make me hypothyroid. After one month, I am at the low end and he has provided me with samples of Synthroid, 0.088 mg once a day to take in addition to the Tapazole dosage to bring me to normal thyroid levels. He said this will give us a greater chance of getting me to normal thyroid hormone levels and maintaining it. With this approach, what are my chances of going off both medications and not having a recurrence of the disease? I'm told my therapy will last 12 - 18 months at a minimum if my levels remain constant. Also, I'm aware of the side effects to watch for with the Tapazole, but what about Synthroid?

Answer: Graves Disease is a cyclic disease. It tends to cause several problems throughout the body. The thyroid is merely one of the end organs affected by this systemic disease. Consequently, any treatment will not prevent Graves Disease. Proper treatment will decrease the risk of eventually developing hypothyroidism, but a great number of patients will become hypothyroid regardless of treatment. Synthroid should have no side effects if taken in correct dosage.

Graves Disease
Question: Will swelling around the eye resolve when or if thyroid stability is achieved?

Answer: Graves Disease is a systemic autoimmune disease which involves several organs of the body. The most common sites are the eye and the thyroid. Treatment of the thyroid disease will not necessarily slow down the progression of the eye findings. Ongoing evaluation of the eyes is usually necessary.

Propylthiouracil (PTU)
Question: Problems that may be associated with taking during the first trimester of pregnancy and percent of chances triminster of pregnancy and percent of chances of causing harm to fetus.

Answer: Propylthiouracil commonly referred to as PTU, is one of the drugs available for the treatment of hyperthyroidism and Grave's Disease-an autoimmune disorder of the thyroid. In general, pregnant women tolerate mild cases of hyperthyroidism. But, if treatment is necessary the choices are surgery or drugs. PTU is currently the best drug available-if surgery is not a good option. However, the drug does cross the placenta causing fetal blockage of throxine synthesis (thyroid hormone) and can lead to fetal goiter. PTU must be followed closely due to its other potential side effects-especially on the white blood cell level.

Other risks to the fetus appear minimal; but, tightly controlled studies are not available.

Cushings vs. Graves Disease
Question: What is Cushings Disease and is it related to Graves disease?

Answer: Cushings Disease was the original report by Cushing of Adrenal hormone overproduction. Subsequently, this has been widened to be called Cushings Syndrome which is the physical findings of overproduction/overprescribing of steroid hormones. These can be due to overproduction by the adrenal glands, overstimulation of the adrenals by the pituitary or certain types of carcinomas, or prolonged use of glucocorticoid steroids or ACTH. There is no direct relationship to Graves Disease except that there is a slightly higher incidence of adrenal disease in patients with Graves Disease.

Question: In older patients with graves disease, can tapezol be used indefinitely, rather than resort to radio active iodine to eliminate the thyroid?

Answer: Yes, but, we usually don't use it more than 4-5 months just for practicality.

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