[Harpy]

#1064149

The answer to your question is Yes & twofold.
In the sense that once you have been there, you will always be aware of it in some way, If you achieved remission through ATD’s then you will always be on the look out for a recurance, If you had RAI or surgery, then there is a possibility if not complete, then the thyroid can re grow and start up again, or even if complete then there is the replacement hormone dose as a reminder of where you have been.
Then there is the discussion of the underlying cause of the disease, what causes the antibodies to flare up and start attacking the TSH receptors on the thyroid, even if you remove or disable the thyroid, this controls the T3 & T4 levels and reduces or eliminates the hyperthyroid symptoms, but does not eliminate the antibodies in the blood that attack the TSH receptors and it appears that TSH receptors are present in many parts of our body including muscle, brain, bone, kidneys, pituitary and other tissue, not just the thyroid, hence why some people get the TED, Pretibial myxedema, or other symptoms many years after RAI or Surgery. So it appears that it is important to continue treatment and tests for the Thyrosine Hormone Receptor antibodies (TSH-Rab, aka TRab, TSI), to get the body back in balance. With research pointing to TSH playing an important role in other parts of the body, it is starting to look like getting TSH levels right may be nearly as important as controling T3 & T4 levels, as it may play a role in muscle wasting issues as well as bone density, amongst other things. It appears that the persistently low TSH in GD is due to the AB’s attacking the TSH receptors in the pituitary, effectively telling it there is too much TSH don’t make any more, whilst the actual blood TSH is effectively 0.
So I hope that gives you an explanation as to why you will always have GD, and even those like me, who don’t have it (my partner does), should be aware that we are only one Antibody flare up away from it or one of it’s autoimmune relatives and that also includes a lot of cancers.
This doesn’t of course mean you will suffer the symptoms for ever, but should be aware of taking more care with your body, keeping a healthy diet, healthy lifestyle, and laughing lots, that feeds your Natural Killer cells, which are supressed in autoimmune conditions, they love a good belly laugh.

[genuinruby]

#1018345

I keep reading here and other websites that once you have Grave’s you have it forever. Even in remission, it is still there, even after surgery and after RAI…my question is: What part of Grave’s Disease is left? How will I know what is Grave’s Disease and what was hyperthyroid? Once a person is leveled out on thyroid hormone replacement or a thyroid that has started "behaving itself" leaving the person euthyroid. What is going to be happening to me to make me suffer?

Inquiring minds want to know.

Thanks,
Ruby in Reno

[cynthia]

#1064150

this is a great question I think all of had that question in our mind but never thought to actually ask!!!! I am wondering if my anti rumatoid meds will effect at all??? probablily not !!! I am wondering , just a random thought since I get 2 immune diseases ( ra and graves) what else is waiting out there boy do I sound paranoid….. just a random thought had surgery about one month ago and am finally starting to get my act together still tired and now have pain from "bad" back…and my ra….. am starting a easy exercize plan to atrenghten my muscles it will be slow have been in bed a lot for the last 4 monthes….ugh!!! but I can see the light finally!!!! depression has a lot to do with all of our trips though graves it is hard to keep a happy thought when all is out of control and with the physical problems…. surgery was actually great for me but know the getting "well" process will be slow….bless all and hope we can all share and benfit from this web site by the way how old is this site???? thanks

[Kimberly]

#1064151

Cynthia – The irony is that stress can actually *aggravate* autoimmune conditions, so it really doesn’t help to be in a constant state of worry over what might or might not happen next. However, given the facts regarding autoimmune diseases, we *do* need to know our own bodies, be vigilant for any symptoms that seem out of order, and find a doctor who will work with us to pinpoint the cause. Some patients with an autoimmune disease can go for years without proper diagnosis…so if there is something going on, it is helpful for us to raise that red flag with a doctor, as it could help us get a quicker diagnosis/treatment. Oh, and I believe that this site has been around in some form or fashion since the 1990s, but someone who has been around longer than I have might be able to provide better info.

genuinruby – You got some great info from Harpy on the nature of Graves’. I would also add that one of the presenters at a recent conference referred to Graves’ as a "syndrome" — meaning that it is a condition with multiple components. So while the *immediate* health risk with Graves’ is to make sure that our hypERthyroidism is controlled, the disease is actually much more complex than that.

[genuinruby]

#1064152

Are you saying that graves is not organ specific?

[Bobbi]

#1064153

Hi, Ruby:

To be clear — Graves is caused by an antibody to THYROID cells –or a specific part of a thyroid cell, if you want to get technical. There are questions about why some of us get the eye disease, and the pretibial myxedema, as well. Is it another antibody? Or, in some people is the tissue of the eye muscles, and the skin of the leg "close" enough to the thyroid cell tissue that the same antibodies work to damage those cells there as well? The answer goes back and forth. Some studies show one thing, while others contradict. One of the major changes since I was diagnosed was that Graves eye disease is now known to doctors as THYROID eye disease. I asked my eye surgeon why this change had taken place, and was told that since they were finding the eye disease in patients who had never had hyperthyroidism, but who had some other type of thyroid malfunction, they decided it was more appropriate to call it "thyroid" eye disease.

Anyway, think of antibodies as being tissue specific — or organ specific, since that was your question. It is like a key which only works in one lock: the key is made to work one lock, not all locks. That is more or less how antibodies function, as well. Thyroid antibodies do not attack joint tissues, digestive tracts, etc. They attack thyroid tissue. (And, possibly, to confuse things, they may attack the skin on the shins and the eye muscles, too, but we’re not sure of that. We just know that the eye disease and the shin problems occur together, in folks who have Graves, as well.)

What makes us SICK, however, is hyperthyroidism, caused by the thyroid antibody. As long as the hyperthyroidism is under control, we regain our health.

Does this answer the questions you had? If not, ask away, and we’ll try again to answer.

[genuinruby]

#1064154

Thanks to all who chimed in. It is so much to wrap your head around, and then–lol– if your brain is spinning in high gear it is a challenge for it all to make sense. This illness is so complex. there are so many different things we can go thru, and each patient feels differently when faced with a similar challenge. To me it is like the "Boiling Frog Story", if all the things I have experienced had of hit me at one time I would have "jumped right out of the pot" and demanded treatment asap. But instead, these past 3 years I have slowly cooked, as I kept thinking I was getting better, or going into remission, because whatever sympton at the time, had stopped bothering me so much, or by the time I got in to see the doctor, the sympton had dissappeared. (Seeing the cardiologist for a no longer crazy heartbeat was downright embarrassing.) As one problem goes away another one comes back . I was just worried that it wouldn’t be worth it to have surgery, if I was just going to continue to suffer so much. Thanks again.

[Author]

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