Friends with Graves

Elaine

Elaine is the author of Graves Disease, A Practical Guide. Elaine also has regular articles published at Suite 101

Pam

Pam is a faithful contributor to the support group at Yahoo! Groups

here is another great group at the Mediboard Network.

Reading List

Graves Disease: A practical Guide By: Elaine Moore

The Thyroid Solution By Dr. Ridha Arem

Buddhism Without Beliefs: A Contemporary Guide to Awakening
By: Stephen Batchelor

Useful Resources

Mary's Shomon's Thyroid site on about.com

Amercian Autoimmune Related Diseases Association"

Elaine's column at Suite 101

graves disease

Welcome to my new site, it has a better look and I have finally been able (mentally etc.) to face the work of the overhaul. I haven't got my personal Graves Disease Journal up here yet, but I am working on getting that back as well. To read the old site and my journal go here.

This site is meant to be a gateway. There is SO MUCH information about Graves Disease and I can not put it all here. I am just hoping to provide a place to start. One thing is, if you have been diagnosed, your best weapon is reading, reading and more reading! Any knowledge that you can gather about how this disease works and how to treat will help you in the long run.

The doctors that generally treat Graves are called Endocrinologists. Many times they specialize in Diabetes, so they may not have all the newest information about Graves. This disease is not simple and it may be up to you to help educate your Doctor so you can receive the best treatment possible. This disease (and many others I'm sure) require that you be proactive in the healing process.

In December of 2000 when I was diagnosed with Graves disease I was shocked. Not too shocked though because it had been several years since I had felt like myself. I had an unending string of vague and horrible complaints that had been routinly missed and misdiagnosed. I had physical problems like these:

  • Constant hunger
  • Profuse sweating, sweating even while feezing
  • Terrible moods swings with anger predominant
  • depression and manic behavior
  • racing heart,hard beating, palpitating
  • trouble breathing, breathlessness
  • insomnia
  • inability to concentrate, unable to finish projects
  • a myriad of digestive problems including
    1. stomache cramps
    2. heartburn
    3. diarrhea
As well as a few others. Here's a complete list of all the possible symptoms.

Along the way I was incorrectly diagnosed with many other problems, most of them were mental. However it was the kindness of one doctor who I credit with finally saving my life.

In July of 2000 I was married and shortly after the wedding my Doctor found that I had an ovarian cyst. Following that in September I was diagnosed with about a million food allergies and possibly Celiac Disease It was 3 months later that my Doctor said I needed a thyroid panel. And that is when my journey truly began.

I had been suffering literally for years, at the mercy of Doctors who disregarded me as "hysterical" or a hypochondriac. Finally my problems were solved, I knew what was wrong, and of course, I could fix it!

Not Exactly!

I have since come to understand that Graves disease is difficult to treat, and that most Doctors will suggest the Radioactive Ablative Iodine Treatment (RAI) and this has a host of problems all it's own. I have also learned that even with the actual diagnosis there can be pitfalls and problems that one might not expect with what some consider such a "simple" disease to treat.

Many have come before me and helped me along the way, and for those of you just diagnosed, or searching for answers, I hope I can help.

Graves Disease is an autoimmune disease.

In autoimmune diseases a person's tissues, molecules, or cells are mistaken as foreign and are attacked by one's own immune system, often resulting in serious to life- threatening consequences. In Graves' disease, the autoantibodies bind to the thyroid gland to induce an increase in the production of thyroid hormone. Thyroid hormone plays a major role in metabolism (the regulation of the body's ability to utilize fuel).

Source: American Autoimmune Related Diseases Association Inc.

So while the thyroid is treated in Graves disease, it is not the real source of the illness. That is important to remember when deciding on treatment. The RAI treatment actually destroys the thyroid gland. In essence treating the symptoms, but not the actual cause of the disease.

That brings up to the idea of treatment and the various option available.

Perhaps the most common treatment is RAI. In the beginning, no matter how severe or desperate it seems, it's probably not the best thing to do. You may not be able to think clearly and it's easy for a Doctor to decide for you. Before you decide on RAI please read the Top 20 reasons NOT to have RAI.

Anithyroid Drugs (ATD's) This is the route that I chose. The drugs inclue Methimazole, and PTU. I chose PTU. These medications stop the thyroid from overproducing hormones, it's the excess of hormone that's causing the thyrotoxicosis.

Please email me anytime, I am more than happy to answer questions or get you in touch with the folks on some of the support boards.

I have found the group at Yahoo! to be my personal favorite, but it's very busy!


Valkyrie J. Liles
Last modified: Fri Dec 20 17:30:29 PST 2002