Victoria Posted April 28, 2011 Report Share Posted April 28, 2011 I've finally got my records prepared and ready to mail off to Dr. Grubb, but I have one quick question. I have a history of intermittently low ACTH, cortisol, aldosterone, growth hormone, testosterone and prolactin levels. They aren't necessarily all low at the same time, but one or two are typically low. Are my endocrinology labs pertinent enough to dysautonomia to send to Dr. Grubb? My endo absolutely will not treat me for the low levels, so I wonder if I'd be beating a dead horse by including them? For those of you who know Dr. Grubb, what do you suggest? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted April 28, 2011 Report Share Posted April 28, 2011 I would include them. Dr. Grubb looks at all causes and endocrine issues can cause pots symptoms. FYI though you send your records ahead of your appointment and probably won't look at them until you are there. He is a sweetie, he still is seeing patients even though he had a bout with kidney cancer I think and his wife has a brain tumor, which sounds like is acting up again. I know it takes a while to get in with him, but his personal circumstances could effect appointments. Also he didn't do any additional testing on me, went over records and suggested my cardio run a supine/standing catecholamine test, which proved I was pumping out massive amounts of norepi on standing, he also prescribed labetalol.If you haven't had a Tilt Table done yet, he does do them and I would have wanted him to do mine had it not be done already. You don't want to do more then one unless you have to. If you need one make sure you arrange ahead of time and ask them to schedule that for when you are there. BTW if you are one of those that goes up when standing producing extra norepi is another way the body gets blood back up to the brain. Abnormal amounts of any hormone can mess up your other ones. Also, it can be hard to get follow-up long distance from them. They will however send you a card reminding you to make your annual follow-up. I choose not to spend the money to go back from where I live, even though I would have liked to have seen him again. Good luck! Quote Link to comment Share on other sites More sharing options...
Victoria Posted April 28, 2011 Author Report Share Posted April 28, 2011 Thanks much for the FYI. I'll go ahead and include my endo testing.My Norepinephrine is high, but to date, no one has made an attempt to connect the dots, and I definitely don't see that in my future here locally. I had one tilt table back in '02 or '03 but norepi wasn't checked when they did the TTT. What a waste of time and $$$ that was. I don't care how long it takes to get in to see him or if the follow-up is difficult. Knowledgeable yet slow care is better than no care at all.Thanks again! Quote Link to comment Share on other sites More sharing options...
Victoria Posted April 28, 2011 Author Report Share Posted April 28, 2011 I always have one more question, don't I? My QSART was abnormal in '02. Does this mean I do have small fiber neuropathy? If so, does this add credence to my ANS dysfunction? Quote Link to comment Share on other sites More sharing options...
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