[Ski]

#1070059

I can say I’ve never heard of such a thing. Autoimmune research is ongoing, but they are not very far along in the process in terms of either understanding exactly why we get these diseases or in terms of how successfully to treat the autoimmunity itself. Treating autoimmune diseases involves treating the symptoms and saving the life of the patient at this point. You can raise the health of your body in parallel to treatment, meaning that it always helps to find things your body is sensitive to and eliminate them, or find out what provides a lot of benefit to you specifically and make sure you get that, but that has more to do with just doing what’s right for you, vs. what only Graves’ patients, or autoimmune patients, would derive benefit from.

As far as not being "cured" of Graves’ ~ well, if you’re talking about just the thyroid disease, through surgery you’ve eliminated the target of those antibodies, so in that one respect you are cured. Those specific antibodies have nothing to attack now, so they can’t harm you any longer. Antibodies are much like a lock and key relationship, so it’s not as if antibodies to one thing can morph into antibodies to another thing, simply because their target is removed. What we now know, however, is that Graves’ is more a syndrome than just one disease, and so multiple sets of antibodies are involved (potentially) within that syndrome. For that reason, no, you are not cured. Those other conditions (TED and pretibial myxedema) happen rarely, but they do have a somewhat unique connection to Graves’ thyroid disease. TED can happen with other thyroid diseases too, but most commonly along with Graves’ thyroid disease.

The logical conclusion is that, with all this lack of information, there may yet be other sets of antibodies we carry that we don’t know about ~ all of us seem to experience "memory issues," even after successful treatment. Is that lingering effects from the hyperthyroidism, or something else? We don’t know yet. So the book is definitely not all the way written. But work IS ongoing, and we’ve met some of the doctors at our conferences. They WANT to have something they can hand us, something simple, that will solve it all. But right now, that just doesn’t exist.

I will say that with all the dysfunction you are suffering, I would suggest that you see what happens if you try adjusting your thyroid hormone replacement by tiny bits. It is POSSIBLE that you have been off, just a little, for a very long time, and your body is manifesting that imbalance in some of these ways. The range of normal is enormous, and different people ARE normal at every different point along that range ~ that’s why the range IS so large. Just because your levels fall within that sea does not mean you have found the right spot for you. It can take some time to adjust it, but if you find a doctor who’s willing to see how it works for you, who will monitor you and advise you, it could well be worth the effort. It’s worth trying everything you can to really feel well again.

[Charlie]

#1019203

Hi!
I have had Graves since I was 12 years old/thyroidectomy at 14. I had been told after my thyroidectomy that I was cured. When I was 35, I found out via this website that infact, Graves was not curable. I am now 48, and have been dealing with the last 3 years with swollen and sore saliva glands/lymph nodes, and fatigue. I have chronic pain in all my joints since I was 12. Sjogren’s Syndrome , Chronic Fatigue, Lupus, Arthritis, Diabetes, and almost everything else has been ruled out. Labs show that I am fine with thyroid levels, as well as everything else that can be screened. I have been working with my endo (who I love!) trying to figure out what is going on. I started with a new Primary Care Physician has now encouraged me to go through Mayo Clinic or UCLA for a possible diagnoses. She said there are so many "serums" available for many autoimmune disorders, such as Lupus, Arthritis, etc. Question: Has anyone come across similiar information or have any ideas what direction I can head to pursue this? Thanks! Charlie

[momof2]

#1070060

I am so sorry you are going through this. My son was recently diagnosed with Graves and yesterday they put him on Methomazole to try to control it.
The DR was asking about history and that and I told her I have autoimmune hepatitis (my immune system attacks my liver) and a few times she said that is interesting. She said that autoimmune disorders can be hereditary but yet we can have different ones. She also said not to be surprised if I or my son ends up with another one someday as it is common to have have more than one autoimmune disorder. She also said that sometimes figuring them out though is another story. Sometimes they are very hard to diagnose and the diagnosis can be named on symptoms only. When I am having an attack steroids are my lifesaver to lower my immune system and stop the attack. To bad the side effects are very nasty.Only once I had to have some chemo to lower it fast.
Have you seen an Immunologist? The first time I was in liver failure in the hospital I had one along with the liver docs. I remember my liver DR telling me the immunologist is the best person to diagnose an autoimmune disorder.

Good luck to you and I pray they can figure out what is going on.

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