sue1234

I get my magazine by subscription, and it's dated August 24. It may/may not yet be on the racks at the stores. Anyone else ever read this magazine? The article is based and quoted on a Dr. Peter Rowe, a NMH specialist at the Johns Hopkins Universtiy Medical School.

I'm in Louisiana. It's a women's magazine that is at the registers of my local grocery stores and Wal-Mart registers. I was assuming if Wal-Mart carried it, it must be nationwide, but maybe not. Anyone else know of the magazine?

I would like to point out that the magazine is FIRST, not that I meant it was the first magazine! I was glad to see a mainstream article addressing the issues that most of us face. The only problem I saw with the article is it made it sound too simple to fix the problem. They didn't address the lightheaded/fainting issue as much as they should. It kind of just sounded like if you are fatigued, you might have NMH, and if you do these things, you will get all well! I did like that they mentioned hypovolemia, as I really think that is my personal issue, even though I don't know why I might be. But overall, it was an article in a major magazine(well, it's in all the grocery stores!).

I had one 3 years ago. The only thing I "felt" was an initial flushing feeling across my face(mild) and that was it. My test showed I stimulated more than double, so my adrenals were reacting fine. Good luck, and let us know how it went.

Well, I had the blood drawn at 7:30 a.m., fasting, and had not had anything to drink, except a bedtime sip, for about 12 hours. I didn't do any urine work, so don't know the osmolality. I guess I don't have enough information to actually make any conclusions on this.

I'm sorry--I don't know the range as I didn't get a paper copy. Does anyone know if this is significant? I requested this test specifically of my doctor as I've read/heard of people taking DDAVP and finally being able to tolerate the heat and actually sweat, along with helping the orthostatic issues. Thanks.

I was checked with a GTT for an insulinoma. My fasting insulin was under 10, but when my blood sugar went to 180, my insulin went up to around 170(don't have my papers handy, going on memory here!). And then at three hours, my glucose dropped to 55(no symptoms yet!) and then at 3 1/2 hours I told her I had symptoms and needed sugar, so no telling how low the sugar went. But the insulin at the last draw was like in the 50s. The "natural" doctor that ordered it didn't really comment on it, so it has not been seen by an endo. Do these numbers mean anything? And what was everyone's FASTING insulin levels????

Thank you all, so far, for your personal information. I live in Louisiana, but no experts in my local states. Just trying to see if I can get a game plan!

I have read a few things here and there, but not a ton of stuff. I would like to hear some stories about how he went about helping your condition. He is the closest "expert" for me to travel to. You would think living close to Houston's "largest medical complex in the world" would be an asset, but not for POTS!!! Thank you so much to anyone that can give me some information, as I don't do well traveling, and it would be a huge ordeal for me to ride 6 hours, in the summer heat, in a car down the interstate(with the anxiety of the a/c going out in the car! Such anxiety all the time ).

Did you get into the study part of their program or did you just do an appointment?

I have never actually fainted, but feel faint all the time while I'm up and about. It is very limiting.

I'm at a loss. I've tried cardiologist and endocrinologists, but someone recommended a neurologist. Any ideas from someone who's found a doctor in Houston(or New Orleans, equal distance for me)???? Thanks so much for any suggestions.

futurehope- As I was reading this thread, I was thinking the same exact thing as you--cortisol. I knew that illness brings up our cortisol levels and Addison's patients stress-dose with cortisol when they get a cold or other illness. I'm not sure if SOME of us either get not enough or, at times, too much cortisol. I think there COULD be a grey area where doctors don't know how to check the complete working of the adrenals. I have Hashimoto's(autoimmune) and require B-12 injections(autoimmune), so it wouldn't surprise me if there was some autoimmune process attacking my adrenals. My thyroid, before being removed, would go hypo, then hyper, and so on for years.

summer, I was thinking, just thinking here, that there might be less perfusion to the brain as we stand because a percentage of the blood volume is pooling due to gravitation, and then all the POTS overdrive kicks in but can't seem to perfuse the brain as it would in a lying down situation. Like I said, just thinking!

Mine started within 4 months of my family evacuating for Hurricane Rita(occurred 3 weeks after Katrina). It was very stressful for about 10 days, when our electricity came back on. I don't know if that was a causative problem or just coincidence. I know mine did NOT come from a viral infection, as I had not had a cold for 9 years before this(I just had my my first cold this past winter after a 12 hiatus!). Bacterial infection is a possibility. I have had what seemed like bladder infections a few years ago, treated with strong, bad antibiotics. Maybe it was the strong antibiotic that messed something up. I know one thing for sure. I will not settle for POTS taking over my life. I will continue to look for the cause and possible treatment for as long as I am able to. This came on suddenly, and something caused it. I've always wondered if the stress just caused a bigtime weakening of the adrenal glands. I know this is not Addison's, but maybe on the way to it. I have polled a few Addison's patients about how they felt a year or two before they were diagnosed. MOST said they had been having odd symptoms that slowly led up to their full-blown Addison's(adrenal failure). What if our adrenals are just weakened, able to keep us going, but not with the normal daily stressors of everyday living? I get worse when I am stressed, good or bad. So far doctors don't really look at the adrenals as being weakened, just if they are working, overworking, or not working. They don't address the weakened department. Any thoughts? GaryRN-hey, I WAS an RN until my problems left me unable to work. Anyway, you said the thing that a virus and stress have in common is immunosupression. They also both cause a stress on the adrenal glands. If an Addisonian gets a cold or has a huge mental stress put on them, they are supposed to "stress-dose" with cortisol so they don't go into a crisis. That could also be the common thread.

I also have low vit. D. It was at 17. I was prescribed the 50,000 IU once a week, but I guess I'm the rare one that DID react to it. It made my b/p go higher, reaaally constipated, headache, and insomnia much worse. I know I need it, but can't seem to get past the side effects. I even get these effects if I take an OTC brand of 400 IU of vit. D. IF I knew my potsy symptoms would get a bunch better or even go away, I would probably fight through the months it would take to get my levels up. I just wish I knew! You know, calcium and magnesium are two minerals that work/oppose each other. Is it possible we end up with less calcium(like intracellular) and more magnesium, because of the vit. D deficiency? Would then the magnesium make our system, and especially our circulatory system be too relaxed, thus the blood pooling, etc.? Every time they test my magnesium, it sits at the high end of the range, and I don't take a supplement. This is all stuff I've run through my mind in the past, and now that I see so many people just today talking about how low their vit. D is, maybe this is a contributing factor, huh?

You've received alot of good advice. The only thing I would add is, has she had a stimulation test to see if she has Addison's disease? Any time I hear of someone who can't get out of bed, and especially vomiting, I think of Addison's. I don't think a doctor would refuse to test, given the severity of the symptoms.

How do I get a full article? All I saw was an abstract.

I had a doctor once tell me, before POTS but still fatigued, as he looked at my hands in the exam room, "Girl, you have no blood!". Then we did the labs, and of course, my labs looked perfect. I FEEL anemic, like I said before, but normal labs. That's why I've been wondering about the "concentrated blood" theory over the last few weeks. I wonder how we could find out for sure--I wonder if there is a doctor out there that would understand this and know how to test it correctly??? I bet if I went to a hematologist, he would just do labs and say I'm not anemic.

Interesting information, but I'm not sure I understand what the outcome is. Do you appear to have less blood volume when you stand up for the test or when you lie down? So, if you have less volume, wouldn't that possibly make you look NOT anemic as it would concentrate your blood components more? I'm wondering, because, I have been wondering about that lately. All my "iron" labs look great, but I fit all the symptoms of anemia. So, having POTS, I have been thinking about this for a few weeks--could a lower blood volume actually be concentrating our RBCs, etc., making it look like we're not anemic, when in fact, some of us could be? Any thoughts?

I have not done the test yet, as everyone has been busy and I haven't had a chance to do labs. Will do them next week. Tessa, To answer some of your questions: 1. My endo ordered all those tests at the first appt. Now this is NOT the first endo I've been to(been to many, as I have ongoing thyroid issues). 2. I had a normal diet beforehand, as I didn't know any better or about the labs being taken that morning. 3. I have not received any treatment yet. The only thing I take, besides thyroid meds, is xanax at bedtime. 4. And I have only about 1 period a year(low FSH/LH, so not menopause). I wouldn't know what phase in the cycle I might be in. Thanks for the forum--I'll look into it! Sue

Thank you so much for the article. I actually have had a 7mm growth on one of my adrenal glands for the same length of time that I've had POTS symptoms. Just can't get any labs to confirm a pheo, but I'm always thinking it's sitting there doing something! In other words, IT'S there AND I have symptoms, so, to me, it kind of connects the dots(even without labs). My latest doctor is the first to have me, next week, stand for as long as I can, then have the lab tech draw blood to check my catecholamine levels. Sounds smart to me, as sitting quietly and drawing blood is not truly representing my situation(or anyone's with POTS)! I can't wait to see what shows up. Just hope he knows what to do with the data.

By the way, what kind of doctor best works with POTS? Especially is aldosterone is the problem? I have been seeing mostly endos, and a cardiologist. No luck with any of them.

I was reading where alot of people got OI during pregnancy(a stress on the body) or after illness(a stress on the body), or out of the blue(could've followed a life-stress situation). I know for myself, I get way worse with any stress--good or bad. For instance, I had to evacuate for hurricane Gustav(stressful) and stayed home with whipping winds throughout hurricane Ike last weekend. For both, I had awful anxiety that wouldn't turn off, and then afterwards, I had no energy and more lightheaded for a few days afterwards. It's like my body, and thinking adrenals, just had to catch up or something. I was one that had awful morning sickness for all of my pregnancies, and one of the symptoms of underworking adrenals is nausea/vomiting. When Addison people get sick, they have to double their cortisol to handle the stress of illness. Does anyone have anything to theorize on all this? This is just a possibility from my years of fighting this and looking at all the angles.

I had it done after sitting around the doctor's office at the appointment, and then sitting in the waiting room for the blood draw. I don't have high b/p in general, usually sits around 120/75. Just, according to my tilt table test, the longer I stand, the higher my b/p goes up. I cannot go out and do shopping or even sitting in a stressful situation, as I feel lightheaded. I walk to the car, from the car to my next chair, and back to the car. The heat in this south is unbearable--I stay in my a/c house most of the time. I can't work, drive, and do normal things. The longer I'm up and around, the more lightheaded I get, I start getting real hot, and my hands and feet swell. I know that's when I've pushed myself too long, even though that might have only been 20-25 minutes.