Kitsakatsa Posted June 4, 2007 Report Posted June 4, 2007 Hello All. Do we have any members with POTS and Addison's Disease or complications with Adrenal Gland hormone/steroid balance?I had a recent illness that I'm still feeling quite under from. My physician suggested Medrol which helps to replace the lost Glucocortisol balance. My symptoms were pretty close to Adrenal insufficiency. While on the Medrol, I felt great then as it tapered- I felt worse until it resulted in a weekend of sleeping 16 hours a day and the onset of bronchits (something I get when worn down to the ground). It leaves me to wonder if Adrenal problems are common among us, or if we can uncommonly find ourselves in this unfamiliar territory when we get worn out. Does anyone have experiences like this?K Quote
Sunfish Posted June 4, 2007 Report Posted June 4, 2007 i would definitely recommend a search on cortisol as there have been pretty indepth discussions on this in the past. if it helps in the searching, i think i recall that myself, futurehope, & morgan were big contributors, though i'm sure i'm missing some others. let me know if you have trouble finding them & i'll see if i have better luck.in short, there are some members (though not necessarily with POTS as the dysautonomia diagnosis) who have been found to have some deviations from the norm in terms of cortisol levels in ways that aren't always evident with baseline cortisol testing/ bloodwork. treating the issue hasn't always brought about any notable change in symptoms, health, etc. thats my VERY condensed summary. in general, however, i know many (though not all) on the forum have mentioned feeling better while on steroids prescribed for other reasons but also have trouble coming off of them. my understanding is that this actually isn't all that unusual in the general population though, and isn't necessarily indicative of any baseline problem with cortisol levels.hope this helps, melissa Quote
doctorguest Posted June 4, 2007 Report Posted June 4, 2007 Just want to add that doctors often joke that "steroids can make the dead feel better" . Hope I didn't offend anyone with this. It's true that many people with various problems feel better while on steroids, but some with autonomic dysfunction feel worse because it, in a way, acts like a stimulant and can affect BP, HR, glucose level, etc., cause insomnia, anxiety and changes in appetite. Has your morning cortisol level been checked? Abnormalities in cortisol level seem not uncommon in dysautonomia because of the alteration in the hypothalamic-pituitary-adrenal axis. If you have low a.m. cortisol, it may warrant further evaluation for adrenal insufficiency. Quote
lthomas521 Posted June 5, 2007 Report Posted June 5, 2007 When I was very very sick, my doctor (a nephrologist) did a 24-hour urine test for aldosterone metabolites. My values were over 8 times the upper limit of normal. I hoped that that would give us some sort of clue, but he said that it was probably just a response to the hypovolemia. In other words, my adrenal glands were trying to correct the low blood volume. I think the aldosterone metabolite levels went way down after I started with the salt loading and the Florinef. Quote
Sunfish Posted June 5, 2007 Report Posted June 5, 2007 lol..thanks for the grin doctorguest. guess that's one way of confirming what i'd heard in regard to steroids in the general population, eh?? Quote
DanniBunny Posted June 5, 2007 Report Posted June 5, 2007 I ddi a 24 hour urine looking for any type of odd hormone, chemical levels - they didn't find anything in them or any of my blood work to suggest an adrenal issue. Quote
flop Posted June 5, 2007 Report Posted June 5, 2007 I was checked for Addison's disease by an endocrinologist (at my request) when I first started having recurrent syncope. My symptoms fitted Addison's so well that I was prescribed high dose Cortisone to take at home over the weekend whilst waiting for the results of my short synacthen test.In Addison's disease your 9am cortisol is usually low and fails to rise in response to the synacthen. (I think that for a normal result the post synacthen cortisol level has to rise by at least 200 and to over 500 mmol/l).My baseline cortisol was over 900! So certainly not Addison's.I have had to take steroids (Prednisolone) for very severe hayfever the last 2 summers. The steroids make me feel much better, both in sorting the allergies and virtually getting my POTS symptoms to disappear. It was great to be able to forget about POTS, dizziness, excessive fluids, and forget that I was ill - the problem came when I had to come off the steroids. Everytime I decreased the dose I felt really POTSY for about 4 days. In the end I had to get down from 7.5mg by reducing by half a mg a week - took until November just to get off the wretched things. If they weren't dangerous I wouldn't worry but I know the longterm damage that steroids can do to your body.Flop Quote
Felicity Posted February 1, 2008 Report Posted February 1, 2008 Just came across this topic; I have recently done a saliva test for cortisol/DHEA. My cortisol is very low in the morning, rising during the day, DHEA is high. Interesting that others have the same pattern. I have POTS, often with a very high heartrate (often 170-190 even when lying down!) but BP is fine, don't suffer from dizzyness etc. just fatigue. Felicity. Quote
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