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GingerLoxParticipant
I agree that you should find a good endocrinologist. In addition to rechecking the thyroid levels, I would definitely have him check your adrenal function. In Hyperadrenergic POTS, adrenaline production is always on…so in between episodes the adrenal gland experiences fatigue because your body lives in a constant state of overstimulation. I would also request him to order a supine and standing norepinephrine test…if your norep increases dramatically from lying to standing then a diagnosis of Hyperadrenergic POTS can be made. We are currently scheduled to see my daughter’s endocrinologist…because it is my hope that she can address the adrenaline surges by suppression medication that will address the adrenaline production which should help all of my daughter’s issues and not just the elevated heart rate. We are also going to have her rule out pheochromocytoma/paraganglioma (type of tumor that secretes catecholamines) because Hyperadrenergic POTS can mimic such a tumor. The symptoms are very similar, because they both oversecrete adrenaline, but they have different causes. If you have Ehlers Danlos as your primary disease then your adrenaline secretion is most likely due to Hyperadrenergic POTS and not a tumor. But I think its worth ruling out.
February 22, 2014 at 5:49 pm in reply to: What meds do those of you with Hyperadrenergic POTS take to control your symptoms? #4898GingerLoxParticipantThanks for the responses. If you don’t mind me asking, was the beta-blocker you were on a non-selective or a selective beta-blocker that is specific to just the heart beta cells? I am very interested in the non-selective bb, since so much of our issues are systemic wide and not just directly related to the tachycardia portion of this dysautonomia. Any thoughts?
…and…Yes…my youngest daughter has been on the “antihistamines for H1 & H2/antacids/PPI/leukotriene antagonist/anti-vomiting/hormone suppression regiment” for 2 years now. She was diagnosed via biopsy with Eosinophilic Gastroenteritis of the Duodenum and Colon, which is a disease process that is a direct function of mast cells/histamines. She is followed by an amazing GI specialist, and, recently, an Allergist. Although she responded very well for a year to the initial dosing, the past year she has been struggling. We do know that these meds are still working because her most recent biopsy indicated there was improvement! We are thrilled with that outcome! And…We feel strongly that we have pinpointed another source of her stomach hyperacidity and resulting inflammation since her official diagnosis of POTS. Her blood sugar levels are completely out of whack…and now we understand why. I will post more about that later to see what everyone’s take is on that subject!
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