[Anonymous February 18, 1998 at 3:23 am Post count: 93172]

#1051861

I’m getting even more confused than normal. Graves is when the antibodies in your immune system attack your thyroid and/or your eyes? Any other body parts? PTU gives you a chance to go into remission–from the attacks on the thyroid and/or you eyes? Are there any indicators of who might be a good candidate for remission? Does it have anything to do with how sever your case of Graves is? What determines whether you have a mild case or a sever case? There is not treatment for what causes your immune system to go whacko? They only treat the symptoms of the hyperthyroidism and the TED? If that’s the case, why do so many people who don’t have RAI eventually go hypo? All the books and literature I have read seems to focus on the initial phases of the illness. Anyone have any suggestions on where to find info about the long term effects? Thanks

[Anonymous February 18, 1998 at 7:45 am Post count: 93172]

#1152667

Hi, Confused (Welcome to the Club !):

To try to answer some of your questions:

1. Yes, the problems we have with Graves’ — the thyroid, the eyes, etc .– are caused by our immune systems. We have an antibody that overstimulates the thyroid, causes the eye muscles to swell (simplistically), and in some cases can cause hard patches to develop on the lower legs (“pretibial myxedema), or cause the bones in the fingertips to change shape (acropachy — sp?). These last two are rather rare additions to the woes of Graves. Not too many Graves’ patients get them.

2. With the antithyroid drugs, most articles that I’ve read say that the best indicators of someone’s chances for going into remission are a small gland (i.e. little or no goiter), and mild hyperthyroidism, caught early on. What is meant by “mild”, I don’t know. I’ve never seen it defined.

3. There is, at this point in time, no treatment for the immune system abnormalities. Doctors do know how to suppress the ENTIRE immune system, but those techniques are typically temporary in nature. They cannot single out bad antibodies and get rid of them. Nor can they stop the process of “bad antibody” production, once it has started. Antibodies do, however, apparently wax and wane (normally) in our systems, but again the “why” is unknown. So, barring any treatment for the CAUSE, the medical community has treatments that protect us from the symptoms/problems created. In the case of pretibial myxedema, topical cortisone is usually used. I don’t know what, if anything, they do about the finger problem. That being so rare, there may not be much done, unless it is cortisone-type drugs (but that is a guess).

4. As to why many of us can expect to go hypo eventually — no matter what the treatment we choose — this has to do with the pesky antibodies, and the fact that there is no treatment to rid us of them. The antibody attack can eventually so damage the thyroid tissue that it no longer is capable of producing sufficient thyroid hormone. There is no guarantee that this WILL happen to all of us — but it is very likely.

Hope this helps.

Bobbi

[Anonymous February 18, 1998 at 9:35 am Post count: 93172]

#1152668

I’m getting even more confused than normal. Graves is when the antibodies in your
immune system attack your thyroid and/or your eyes?

The antibodies attack the cell wall of the thyroid cells, causing them to overproduce thyroid
hormones. The antibodies just circulating within your blood system
cause a reaction from your eyes that somehow increases the pressure
behind the eye ball and that causes the eyes to bulge out.

Any other body parts?

The antibodies are an anomali that possibly has a genetic cause. That is
why sometimes people with Graves can get and can possibly do get other autoimmune
diseases, such as diabetes, addisons, etc.

I have diabetes type II and Graves, my sister has addisons and hypothyroidism.

PTU
gives you a chance to go into remission–from the attacks on the thyroid and/or you
eyes?

From the attacks on the thyroid. It is just the antibodies circulating in the blood itself
that hurt the eyes.

That is why even if you go into remission. The eyes may or may not get better. There is no
direct correlation between the remission and the eye disease.

Are there any indicators of who might be a good candidate for remission?

Not for what I understand. Most doctors say there is a 50-50 chance you will
go into remission.

Does
it have anything to do with how sever your case of Graves is?

I don’t know.

What determines
whether you have a mild case or a sever case?

I was diagnosed with a severe case of Graves. When I watched the iodine uptake scan pictures,
what I saw was that most of my right thyroid had taken up the iodine and about 2/3 of the left part
of my thyroid. So from what I have seen of my results. Most of my thyroid is being attacked.
That is just what happened to me. I can’t really answer your question, but that is what happened
to me.

There is not treatment for what
causes your immune system to go whacko?

From what I understand, the answer is No. I believe it is just a genetic
“defect” that is passed from generation to generation. From what I understand
they just know it possibly runs in families. And they also say that
extreme stress can trigger it. Like a death in the family something like
that .

Just like my diabetes, I had the genetics to cause it. My father had it.
I did not realize that if I was overweight it would trigger the gene
to cause the disease of diabetes. I got caught and developed the disease.
None of my siblings have developed it as far as I know. The overweight triggered the
diabetes. And extreme stress for me probably triggered the graves.

They only treat the symptoms of the
hyperthyroidism and the TED?

As far as I know that is the case.

If that’s the case, why do so many people who don’t
have RAI eventually go hypo?

Because RAI is a treatment that kills the thyroid cells. It is not like
antithyroid drugs that just make the thyroid not produce so much of the
hormones. Radiation treatment with Radioactive Iodine 131 (different than
the radioactive iodine 123 used in uptake scan) kills the thyroid cells.
You take the radioactive iodine and it travels to your thyroid. Your
thyroid needs iodine to make the thyroid hormones. So when the radioactive
iodine gets into the whole situation of making hormones. Because of
the radioactivity it kills the cells. Because they have to “guess” how
much radioactive iodine to use, sometimes they have to do this several times to
kill all the cells. OR sometimes people do have some living thyroid tissue
left.

Whether there are cells left or not, the doctor then prescribes synthetic
thyroid hormone so that you can live.

The whole reason that many doctors say to do RAI is because it is easier
for them to give you synthetic hormone than it is for them to
use antithyroid drugs to make the thyroid to slow down. Another reason is
if the patient is allergic to the antithyroid drugs.

All the books and literature I have read seems to focus
on the initial phases of the illness. Anyone have any suggestions on where to find info
about the long term effects?

I can’t answer this . I am just in the beginning of it also.

by long term effects? Do you mean after taking antithyroid drugs and going into
remission?

From what I read is that Even if you go into remission the thyroid because of the
Graves will eventually go hypo anyway within the next 15 years.

If you are talking about RAI?

Depends on the doctor. Some of them are good at getting the right dosage of synthetic
hormone others are not. And it take some time to get the right dosage anyway.
Also then you have to take the synthetic hormone the rest of your life.

There also is another option Not to treat the Graves at all. If you choose that
you take a risk of damaging your heart and having a thyroid storm .

It is possible to have a heart attack or a stroke if you do not treat the Graves. This is while
not being on any heart medication. A thyroid storm is a life threatening condition. It is when
the thyroid gives out a big gush of thyroid hormone and it can cause
your whole body to tremendously speed up. It is an ER situation.

All my information was taken from reading articles from the Health Pathfinder website and also using Medline searches searching Graves disease.

And from reading the book ” The thyroid sourcebook” by M. Sara Rosenthal.

“Take all of what I said with a Grain of Salt and check things out for your self.”

You yourself are responsible for your own life.

Lynn

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