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.
[posted 08/4/2000]
Question: my dosage of Synthroid was 1.12 a year ago, then increased to 1.50, then decreased to 1.25, and now decreased to 1.0. I feel sluggish since taking 1.0 and I wonder if the doctor decreased it too much, since it is lower than the 1.12 (which blood tests determined was too low) a year ago. Can the thyroid randomly produce more thyroid hormone? Thank you. Nancy Scobie
Answer: You need to know your tsh level. This determines the dosage of thyroid and this type of variation is very uncommon after the intial Graves. Usually we need to increase the dosage, not lower it. But, usually very slowly and most patients stay on the same dosage for a long period. If your tsh is high, you are receiving too little replacement.
[posted 06/11/2000]
Question: I am a 24 year old male diagnosed with graves’ disease. I just recently began taking synthroid(generic) after having my throid removed by radio active iodine. I have been having double vision especially at night, it is hard to focus on objects at a distance. Could this be a result of the medication?
Answer: No, but graves can affect the eye have your md make an appointment with an eye specialist.
[posted 05/30/2000]
Question: I am currently Taking 60 mg Inderal Long Acting, as well as 30 mg of Tapazole every day to treat Grave’s Disease. I want to know if it will be harmful to consume alcohol while on these drugs. Exactly what are the side effects I can expect to experience. I rarely drink and have not while I have been on this medication because I don’t know the side effects however, when I drink I have more than a few drinks but not so much that I pass out, vommit, or forget what has been going on. Thank you for your time and your help.
Answer: Shouldn’t be a problem in moderation(less than 3 a day). You would need to check your liver functions if you have regular intake, but not usually a problem.
[posted 03/26/2000]
Question: I was diagnosed with Graves disease in Dec. of 92. I have been on tapazole the entire time. I am currently taking 30mg/day and have been on this dose for a couple of years. Previously it was 40mg. My thyroid has always been slightly enlarged but it seems to have gotten bigger lately and I’m becoming concerned. I feel fine. I’m just wondering how big the gland will become.
If I decide to have the radiaion therapy, will my thyroid shrink? I’ve always been afraid to have this done. It seems the side effects are awful and since I have always felt fine on the tapazole I’ve never really considered having the radiation treatment until now. Is my thyroid permanently enlarged? My doctor is an internal medicine doctor. Should I see a endocronologist?
Answer: The radioiodine side effects are usually pretty minimal since the iodine is only taken up by the thyroid gland. It usually shrinks some(but not always). Most would recommend some type of permanent treatment if you continue to be hyperthyroid after a year of treatment. I suspect you would be more comfortable discussing this with an Endocrinologist.
[posted 08/14/1999]
Question: I was treated with radioactive iodine for Graves disease in December, 1998. I then developed hypothyroidism, and am currently taking 125 mcg Levoxyl. I noticed the hyperthroidism a year ago because I am a runner, and so was short of breath, couldn’t take deep breaths, and developed chest muscle pain from straining to breate. I’ve been consistently experiencing these symptoms to varying degrees over the past year, even when hypothyroid, and now where I’m close to euthyroid (my latest TSH level was .1). I’ve been on the .125 level for 5 weeks, and am wondering if the breathing symptoms I’m experiencing are due to muscle weakness that will gradually go away after I’m euthyroid. The symptoms lessen when I’m laying down, so it appears to be a problem with the muscles associated with breathing.
Answer: Well, it sounds like you are euthyroid. Graves is a systemic disease, I would have some pulmonary testing done-it won’t be cured with time or more thyroid.
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 are
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.
Tapezol
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.
Back to Doctor FAQ main page.