futurehope

Jersey Girl, I was told by the endocrinologist that he does not necessarily think I will have side effects. The reason is twofold: I have demonstrated a deficiency in my response to a stressor (the very low blood sugar); I'm being given a very low dose that mimics what is normally produced in the body. Remember, I have POTS. That, in itself, is not normal. Something is not working correctly. The dose of hydrocortisone is given to replace a deficiency, not treat an inflammation, as in asthma or arthritis. When people with NORMALLY functioning adrenals take hydrocortisone, that's when side effects can happen. My adrenals are NOT responding normally. The ITT test I was given gives my physician confidence about that statement. Anyway, I'll let you all know.

For those interested in the endocrine connection that this post is about, I want to clarify something. During my ITT, my blood sugar was DELIBERATELY pushed to way below normal - 33. This was done ON PURPOSE. It is a number you normally never get to on your own unless you're a diabetic and you have had too much insulin. The blood sugar is pushed way low to stress your endocrine system to see what response your endorine system produces in the form of hormones. The theory, as I understand it, is that the hormones are not producing at a "normal" level, specifically the adrenal and pituitary hormones, and this only shows up when they are stressed by the low blood sugar. Normally, doctors tend to notice non-functioning adrenals. The whole idea is that there can be cases of LOW-FUNCTIONING adrenals that can cause POTS. BTW, my endocrinologist told me today he is a "pituitary expert". I told him, "god bless" because I was so grateful for his interest and work in helping POTS patients. I want to read the "paper" he will write on the subject when he writes it. I may end up being one of the "subjects" in his paper. I hope everyone here can eventually be well and feel better and that's why I'm keeping you informed.

Laila, I am not sure what email you are referring to, unless you are Silvia? I responded to a Silvia.

Hi, y'all! I thought you might be interested in something that I have NOT read about here but has helped some people, and it might end up helping me yeah!!! I see Dr. Khurana, a neurologist, in Maryland and he suggested going to see his colleague at Union Memorial Hospital, a Dr. Shomali, an endocrinologist. He sent me over there because the two doctors are noticing something about some of the POTS patients. They're low on endocrine hormones, specifically cortisol and growth hormone. (Who knows what else isn't working? I don't know.) Now, I've mentioned in another post, that I've already had the test for Addison's disease in which I was challenged with a synthetic ACTH to see how my adrenals reacted. I reacted fine on that test. I went from 8 mg cortisol before the stimulation to 23 mg. That's a normal response. BUT, and here's the REALLY interesting part, I was sent for a more sensitive test to check the output of my endocrine system, the ITT, Insulin Tolerance Test. It needs to be done in a hospital setting as they inject you with insulin, and watch the response of your endocrine system, and catecholamines as the blood level of insulin rises from the injection (into an IV) and your blood sugar drops way below anything that it normally drops to. My blood sugar dropped all the way to 33 at its lowest. That's really down there. BUT, my cortisol response was NOT what he expected it to be. It was 17 and he expected it to go to at least above 20 usually to 24. Also, I had NO growth hormone response, and I was supposed to be responding with that as well. Here goes nothing. I will be TRYING supplemental cortisol at levels that are normal for a person thoughout a normal day - 20 -25 mg/day, I think, with higher levels in the AM. I will start with 15 mg upon waking, and then 5 mg at 4 in the afternoon, and I am to check back with Dr. Shomali in a week and tell him HOW I'M FEELING. One of his patients saw a GREAT improvement from the cortisol alone. Another patient, I think he's also trying the supplemental growth hormone, but I know she's improved as well. He will publish his findings to other neurologists and endocrinologists so they can learn from their experiences. I encouraged him to do that. He cannot guarantee how I will respond since he's on the leading edge of finding something, but the dose I will be taking is not high, nor dangerous and he feels comfortable trying it since I responded below normal on the ITT. Isn't this all very exciting? I'll let you know what happens.

You guys (gals) crack me up.

FYI, Before I was diagnosed with POTS (but I already was symptomatic), I did very poorly at the higher elevations in Reno and Lake Tahoe, NV and in the mountains of California, BUT, I did fine on the airplane rides home. Go figure?

Stacey, Gayla, picture this! A church with reclining members - consisting of us! It cracks me up to think of a bunch of people getting together who can't sit for long.

Stacey, That "fetal position" comment is a hoot!

Stacey, I've contrived my own method of sitting in church. I try to obtain "my seat" as early as possible, which consists of the uppermost seat in the balcony. You can't get any further away from the pulpit (there is no intent implied here, just necessity). This particular seat has NO pew seat in front of it, only steps. I then lean forward/down on my knees which are on the floor. I look like someone with back problems. I chose this seat so that I would not be breathing down someone's neck when I'm leaning forward. And I usually do not stand for anything (though I'm supposed to during certain portions of the service). With prayer I usually can make it, though I may not be feeling that great. And to think I used to be able to work, go to three services a week, sing in the choir, help when I could, and now...... ...... I just do whatever I can, which is not much more than pray. But, to look at the bright side of things, I have had many years when I was blessed with the means and ability to do all sorts of things including raise a daughter, go to college, pilot a small airplane, and more, so I can't say I've missed out on anything. I'm very much aware that this malady could have occurred in my younger years.

Michelle, That makes sense, even though I have never seen one. Thanks for the correction.

Dan Best wishes to you and you can email me at any time if you wish to share info. Take care.

Dawg Tired, I can TOTALLY relate. I wasn't driving during the last year I was working either, neither do I do much now. I also do not sit at a table to eat unless I'm at a restaurant, of course, which is relatively rare, or when we have people over, which is relatively rare as well. I don't think normal people have a clue what it means not to be able to sit or stand , but, I can't waste my life wondering what other people think. Thanks again for your response. I hear ya! BTW, I haven't gotten to the point where I can put my legs up in the pew at church. We have so many people that need a place to sit that before I'd take up a pew seat, I'd go in the "crying" room and listen via close-circuit TV and recline there - though, I would rather be in the sanctuary. So, I force myself on Sundays unless I'm really ill, but that's about the only time I really force myself. I guess you can say we have a different perspective on life

Thanks all of you for answering. I'm also very interested in which of you who have problems sitting currently hold a job? If you have a job, what is it, or how much sitting do you do and how many hours a day and day per week do you work? I'm really interested in seeing the impact the inability to sit has on your life. Thanks again.

Ling, I'm glad you've been blessed by reading a Purpose Driven Life. I have a hard time getting past the "driven" in the title. In my case, I'm driven to do very mundane, everyday things, such as clean the house, do my errands, get out of bed at a reasonable hour, walk the dog, sit through a church service, etc. I have my little routines and responsibilities. So when I see the word "driven" in the title, I wonder if the author knows how "driven" I need to be to do little things? That's why I haven't been driven to read the book. I don't doubt that it is a great motivator. I would just feel more inclined to read the wonderful success stories of POTS patients since they know on an everyday level what it's like to be unreliable (because you don't know from one day to the next how you'll be feeling). Also, on a different level, I totally agree with you that on some level we need to accept what's going on in our bodies and not stay stuck in a "poor me" frame of mind. At least we would be wise not to let the "poor me" color our attitudes towards life and towards everybody. On the other hand, each of us is at a different stage of "ruling out" possible causes for our ailment, and some of us have been successful at improving a good deal. If you can say that you've already "been there, done that" and tried everything there is, then you are in a good position to accept what's going on and move on. If you have not exhausted the options of finding out what's going on (or if you've developed symptoms that can be indicative of another ailment besides POTS), then in that case you would do well to pursue knowledge and not rest on your laurels about acceptance. So I agree with you that feeling sorry for yourself and getting stuck in a "poor me" attitude serves no purpose, but I would feel more inclined to read a book by a person with my ailment, or chronic fatigue or fibromyalgia. Maybe one of us can write a book to inspire the rest of us on our journey? I'm still glad you shared the book that has inspired you and I'm sure your attitude is an inspiration to those around you.

I've had a strange sensation happen to me when I wore my Jobst 20 - 30 Hg mercury support pantyhose. It was winter at the time and my legs felt uncomfortably cold and tired like they were not getting enough blood circulation. It's a strange sensation. Needless to say, I have not tried them in the summer. I told the doctor (who had written a prescription), and he had nothing to say. I suppose I could try a brand that's 15 - 20 Hg mercury instead of the 20 - 30? Or, maybe I was measured and was given a stocking too tight for me? I wish I had the same results as you all. As I've said on another post, I would LOVE to be able to sit (vertically) for a decent amount of time, and I was hoping the support hose would be part of the answer. But my legs felt uncomfortably tired and cold, and I did not feel any better when sitting.

Roy, What's the "real jam" you get yourself into if you don't lay down 2 - 3 X / day? Michelle, Could you elaborate on your wonderful friend? What is her ailment and what is a vertical wheelchair? Thanks.

It's a big relief to me to hear all your answers. I was really starting to wonder what was going on with me. I have this problem ALL THE TIME. Rarely, on a really good day (they've been infrequent), I can sit for maybe an hour without symptoms. But my usual day consists of leaning, propping up legs, squirming, getting up and moving, anything but staying still and feeling miserable (make that MISERABLE). I'm still looking forward to some doctor somewhere knowing what to do about this. Pretty soon I'll be getting test results from my Insulin Tolerance Test which tests for weak adrenals. This is different than testing for Addison's disease where 80% or more of your adrenals do not function. Maybe my test results will tell me something. I just have a hard time believing that I can not sit or stand for any length of time. It's impacted every aspect of my life (as if you didn't already surmise that). Thanks for at least showing me I'm not alone with this. It stinks.

I get symptoms with sitting as well as standing. I get very headachy, get a neckache, feel horrible and just want to recline. Of course, if I want to do any living at all, I stand and sit anyway even though I feel bad. Does anyone else who has POTS have trouble sitting as well as standing? I keep thinking, if I could only sit, well then I could use a wheelchair if I needed to, but, unfortunately, sitting does not help me function. How do you all do when you are sitting (vertically, the normal way)? Thanks for your replies.

Gwem, Were you experiencing any symptoms suggestive of porphyria that steered your hematologist, or were you all just testing for everything and found out by accident?

Hi, Laila, Dr. Khurana is my physician also. He did a TTT, valsalva and sweat test on me. With the sweat test, I must say, looking back on his way of doing it, I would have done it differently. He was the only one in the small room. I was asked to strip down to my underwear only, no bra (when he wasn't in the room). He then came back in and put this white powder all over me using a bag filled with it. After it was all over, he then took pictures of where the powder turned purple. If I had to do it all over again, I would ask for a female assistant in the room when he was with me as it made me uncomfortable. If you want to know any more or have any questions, see my email address below.

I was definitely skinny as a child and I was ribbed mercilessly. I stayed real thin in my 20's and 30's - 5'8 1/2" and 125 - 128 lbs (which I finally considered a "normal" weight compared to what I used to be). Finally, in my late 30's, I began to weigh from 138-142. I now try to maintain my weight between 138-142 lbs. It is now relatively easy for me to gain weight. All I have to do is begin eating foods with white sugar in them, and presto, I'll gain 10 lbs. But I do like to stay on the thin side. It's better on my joints, feet, and back, and helps prevent diabetes which runs in my family. I sure do wonder if being underweight has something to do with all our stomach problems - a characteristic of dysautonomia? Or, I wonder it it is part of a syndrome we all have? Who knows?

Danelle, At the point that I filed, I really had not tried anything since the doctor had not suggested anything (except maybe salt, water, support hose). Regardless of what my doctor was or was not trying for me, I could not go on. It became ridiculous. What good was I to anybody if I was an invalid in a hospital or mental institution? Since then, I've tried midodrine (gave me headache), florinef (gave me heartburn), support hose (doesn't really do anything except make my legs feel cold), timolol (made me feel bad). Currently, I'm on a quest to find out what is causing my POTS and the variety of other symptoms I have. I have been pushing my neurologist to help me with this. I'm in the "ruling out" phase. Right now, I'm working with an endocrinologist to see if my adrenals are "low". This is something I've just learned: Addison's disease means your adrenals basically don't work at all, but some people don't have Addison's, but they DO have adrenals that are below normal in output. My endo is treating 2 POTS patients with cortisol and they are much better - not 100 percent - but functioning and have a lot more energy. The cosyntropin (ACTH) stimulation test does NOT test for this. That just tests for Addison's. I asked for the "next" test: insulin stimulation. That test will tell if I have poor adrenal output. I sure FEEL like I have poor adrenal output when I look at some of my symptoms. I'm determined to look into this. Most doctors, when they see that your adrenals do respond and that you don't have Addison's, well, they just stop there. Anyway, I'm not stopping. I want to keep plugging away until I know as much as I can to help myself. In the meantime, I try not to be too hard on myself with what I can and can't do. I ask myself how I would treat someone ELSE in my shoes?

Money or no money, I wound up feeling like you did on the job and it was IMPOSSIBLE to continue. My husband did all the driving and then sometimes I would tell him he had to drive me home. HE finally told me to resign. I would worry whether or not I would survive the day and it all got me in a state of anxiety on top of everything else. Trying to continue behaving as if nothing was wrong so I could keep my job, etc. etc.. Anyway, I feel like I had no choice. I applied for disability in June, 2003. I am now at the point when they schedule an ALJ hearing. I hope I get it. If I don't, what am I supposed to do? If I cannot work, I cannot work. Besides, not only was I going to keel over, but I was going to have a nervous breakdown on top of it because I couldn't cope with feeling so bad so often. Nobody in their right mind can sustain a job feeling that poorly that often. Would you expect somebody else to keep working if they felt like you do? Only you know what you're going through and only you can make a decision. Anyway, I certainly wish you the very best. I totally understand where you're coming from. Life isn't fair sometimes, but you can't blame yourself. You mean well and you've tried. Don't beat yourself up for having something wrong with you.

Purplefocus, It was my lawyer that asked for documentation of POTS since he had never heard of it and (I guess) some social security people may never have heard of it either. I'm guessing that you want to mail the article to the SS people? It will be interesting to see if my lawyer (or anyone, for that matter), brings up the info in the article at my hearing.

Metoo, Dawna, I think I used the same article and gave it to my lawyer. The link is: http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf I hope this works.