[elizross]

#1058929

I had RAI four years ago and am still having my medication adjusted about once a year. I know this is not a perfect science. I have ocular myxedema and pretibial myxedema. I can’t lose weight but am keeping it stable. My daughter is a doctor and insists that I no longer have Graves because I am now hypothyroid. Is that true? I feel so foolish sometimes because I think I understand this disease but then realize I know very little. I am grateful to have found this forum. It’s nice knowing there are people out there who know how frustrating this condition can be.

[snelsen]

#1171013

Well, you can ask an endocrinologist, but i have to disagree with your doctor daughter. But there is a nice review of it in an old classic text, Cecil’s medicine.

We have Graves’ the rest of our life. My son is a doctor, too. He has learned A LOT about Graves’ and TED since my experiences with both of them.
Shirley

[Bobbi]

#1171014

What does it mean “to have Graves” once our thyroids are removed? That really is the issue. And it is a debate intimately dependent upon how you define things.

What made you SICK was hyperthyroidism, caused by the Graves antibodies. So, if “having Graves” means “being” sick to you, feeling awful, then, no, you probably don’t “have” Graves any more. Without the thyroid to mess up your body’s metabolism, the Graves antibodies cannot do more harm to your health.

Yes, you have to take medication to have normal thyroid hormone levels. So, if that is what you consider “having Graves,” then you still have it.

Obviously, those of us with pretibial myxedema (which included me at one time), or Graves opthamopathy (TED – ditto) have seen the Graves-related antibodies do more harm than just the wonky thyroid levels. But the vast majority of us don’t get the skin and eye disease.

Personal take: since I don’t have a thyroid, and since the pretibial myxedema is gone, and the eye disease has abated, I consider Graves a part of my medical history, and not a current health devil to be battled.

[Kimberly]

#1171015

Hello – If you get 10 different responses on this thread, you will probably get 10 different answers!

We actually had a breakout session during one of our conferences a couple of years ago, and when one doctor used the word “cured” in reference to patients who have had surgery or RAI, it turned into a VERY intense debate!

My personal take is that the *hyperthyroidism* is cured from surgery/RAI, but the Graves’ is still there.

Shirley, who also posted on this thread, was treated with surgery literally decades ago, and just within the last few years has had serious eye involvement. That is certainly the exception rather than the rule, but personally, I don’t think we will be able to say our Graves’ is “cured” until doctors find a way to treat the autoimmune response, as opposed to just our thyroid issues.

[BeckyN9]

#1171016

I remember that break out session. The discussion was very heated. I was surprised myself to hear the doctor say after RAI/Surgery that Graves’ was cured.

My two cents……..Our thyroid is a symptom of Graves’ not the cause. So removing or destroying the thyroid is removing a symptom not the cause. Make since? Any way that is how I see it.

I had RAI in 2005 and I wish I could say that Graves’ is a distant memory for me but I can not. Although, many of my symptoms have been rectified, there are some I still struggle with.

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