December 2008
I just got my results from Dr. Liddell. He had called last week to give me the cortisol reading. Both adrenals had high cortisol levels which he said basically meant they found the adrenals, that's how they respond when poked with a catheter.
Today he gave me the aldosterone scores. Before the ACTH was added, my right adrenals aldo level was 21. After adding the ACTH, it was 208. This seemed in line with him, he did not believe there was bi-lateral overproduction going on. The left adrenal on the other hand (which is where the tumor is) was way out of line. Before the ACTH, left adrenal read 800, and after receiving it, it shot up to 4000, which is extremely high. The diagnosis was that I have a unilateral tumor on my adrenal gland that is out of control-exactly what we all thought. He highly suggested surgery (which didn't surprise me) saying I was too young and in shape to have to take blood pressure meds for the rest of my life, not to mention the danger factor of having such a condition in the first place. As well, I'd never have to take those darn horse pill potassium supplements again. Next step-- an endocrinologist visit followed by the surgeon.
While I'm not thrilled with the prospect of surgery, I now finally have concrete answers with some bright light up ahead at the end of this very long tunnel. I feel relieved in so many ways.
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2 comments:
Can you tell me more about this test. My mom has been diagnosed with Conns and has had the saline suppression test - is now scheduled for the Vein Sampling. She has been given limited info so I am researching it for her. What was this experience like for you?
Jhall-
The AVS procedure is a much bigger deal compared to the saline suppression test, blood work and other tests. It took about 6 hours and you really need someone to go with you. It is an expensive operation and it is very important that you find a skilled expert to perform it.
Overall, I think the experience depends on where it's performed and who performs it. It is a crucial test to determine if it's one or both adrenals that are producing the aldosterone. If your mom is suffering like I was, I would recommend considering surgery if it turns out she has a unilateral adenoma.
Your mom's lucky to have you researching. I recommend reading as much as possible on this disease, which is why I started a blog. There isn't enough written about it, nor is there any long term info on living with one adrenal after Conn's. I would like to see this change. It's a debilitating disease.
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