Birdlady

I didn't really talk to Dr. J that long. Maybe like 6 minutes? He seemed pleasant and ironically knew my EP, which made for an interesting conversation ...He told me other testing that could be done etc. It sounds like they have an attitude if something goes wrong and you can't complete the TTT? I felt like I had to prove myself to everyone there, which is really weird. If my TTT results hadn't been so conclusive, I'd probably given them 2/10 for their attitude problems. No one is caring there except for the nurses/techs doing the TTT. If anyone is going there, don't expect to be treated very nicely... Let them do the tests and then decide if you want to do follow up care with them.

Well if CC goes off of the number of syncopes, then I'm in trouble because I've never fainted. I'm certainly not expecting any sort of miracles. After all if there was a simple cure, then we all wouldn't be here suffering so much. I am really interested to see what my catecholamine levels were and then I'll go from there. I live fairly close (about 2 hours away). I'd love to hear opinions on the QSART and valsalva testing. Do any of you think it is worth the effort? Will it give me any further information about what might be causing the problem? Obviously testing is good, but only up to a certain point. I'm getting some nutrient testing done this week and I really hope something shows up on it. If this is just a rare nutrient deficiency, then I might get better.

That was certainly not followed during my test. I was already at 145bpm and my doctor must have thought it would be funny to see what nitro would do to me. I don't see any other reason for giving it to me. Once I got the nitro, my heart rate hit 180! That doctor was out of his mind for giving me that med. I did not need it. Also if you need stimulated to show POTS-symptoms then you can't really have POTS. Nitro is going to lower a normal patient's BP by vasodilation. That's why they give it for angina pain and other heart related conditions.

No problem at all. I love to see other people's tilt test results for comparison and I hope others are the same as me! I completely hear you on the "I do not want to go somwhere if they are only going to tell me I have POTS and give me yet another BB". Exactly!!! My local EP is worthless and that's about all he is good for, which is depressing to me. If CC can help me to rule out or rule in potential underlying causes, then that will make me a lot happier. Ultimately if I need to go on a BB, then I won't be quite so aggitated by it. As it stands now, my EP put me on a beta blocker and basically said "see you in 6 months..." Uh...that's not acceptable to me! I know the doctor I saw at CC isn't really good with prolonged care, but I'm okay with that. If she can send me in the right direction, then that's more than what my local EP has done for me and I've been seeing him for about a year now. I am very interested to see how these other tests go for me. I'll be sure to post back my results and experiences. Maybe this time they won't be quite so rude to me! Ugh...

As some of you know, I went to Cleveland Clinic on Thursday to get another tilt test done and to schedule further testing. My local doctor even though he is supposedly this "POTS expert" failed to do any more testing on me and I'm looking for the underlying cause of my POTS rather than simply treating symptoms. He's not interested in underlying causes whatsoever. Apparently Dr. J at CC knows my doctor and was shocked to hear of this too. I swear some of these doctors look good on paper, but when it comes to actually dealing with patients, they aren't good at all. These are the results of my TTT. They did not use any meds during the test and I came off of my beta blocker to get a better baseline. My catecholamine levels were taken, but Dr. F said those would take at least a week to come back. Stage----BP-----HR C-01----101/61 74 C-02----105/56 72 C-03----105/61 74 C-Mean-104/59 73 30-01---114/66 89 30-02---109/61 88 45-01---106/61 103 45-02---108/68 106 70-01---115/71 119 70-02---114/64 123 70-03---114/67 126 70-04---106/63 125 70-05---108/59 133 70-06---104/60 133 70-07----99/64 135 70-08---107/63 125 70-09---108/64 135 70-10---107/60 133 70-11---104/68 135 70-12---101/66 133 70-13---107/62 140 70-14---103/63 140 70-15---121/74 145 70-16---106/61 145 70-17---109/66 142 70-18---127/81 150 70-19---107/74 148 70-20---116/71 145 70-21---121/68 140 70-22---101/61 140 70-23---103/67 148 70-24---114/54 153 70-25---107/66 148 70-26---121/49 142 70-27---108/63 140 70-28---101/46 140 70-29----88/65 148 70-30----98/53 145 70-31---102/69 145 70-32----90/65 140 70-33----99/50 148 70-34---101/69 148 70-35---100/57 150 70-36---100/55 150 70-37---101/66 148 70-38----95/67 145 70-39----94/57 150 70-40----88/64 148 70-41----96/48 148 70-42----93/48 153 70-43----92/69 150 70-44---103/55 150 70-45----95/51 150 Rec-01--126/62 77 I was having major heart palps. PVC's with couplets Rec-02--114/59 75 1' Marked sinus arrhythmia was noted Rec-03--110/57 84 More palps Rec-04--107/55 83 Rec-05--107/53 83 What do you guys think? Obviously if my catecholamines are elevated, they can't be that high since my BP's aren't going up. Is it possible to have high catecholamines and low BP's? During the test I was getting butterflies in my stomach like what you get if someone jumps out in front of you and scares you. I also started to get very very hot, sweaty, flush and thirsty. They also had to take the sheet off of me. It was freezing in this room beforehand, so something was happening there. Do any of you have suggestions on what other tests I should have done with these results? I think they want me to do the QSART, valsalva testing and some type of heart mapping. I was treated pretty miserably at first because they didn't believe me. I was in the autonomic department and they thought I was making it up?! Why would I be making up my HR upon standing? The one nurse was very rude to me, second guessing every single thing I would say. I told her that my HR's can easily reach 160 when I stand up and she had the nerve to say "Well you walked the whole way back to the exam room, you got weighed and you seemed fine". I told her that if she had taken my pulse when I first got in the room, that it was probably 140+. I was really mad that a nurse in the autonomic department would even say something as rude as that to a patient! After my TTT results came back, they weren't second guessing me any longer. Their jerky attitudes had completely disappeared. It's a shame really that they didn't believe me.../sigh Overall, even with all of that, I give them a 7/10. The TTT was done very well. The nurses were very friendly, paid attention to every little detail and followed all of the procedures.

I don't think your reaction to scary movies is enough to say that your adrenals are bad. That's just my personal feelings on it. I think that in POTS our norepinephrine levels or triggers are messed up so we can become startled easier than a normal person. Have you had your supine and upright catecholamine levels tested? I think that's a good place to start. The fact that you don't have trouble in your daily life in stressful situations, doesn't seem to fit the bill to Addison's. Once again this is just my personal feelings. I'm certainly not a doctor or all knowing! If your DHEA levels are low, then you need to get a full hormonal work up done.Good luck to you!

I actually feel better right before a storm... I guess I'm the weird one!!!

I'm not completely sure how it works. I know that in Addison's DHEA-S levels are normally low along with low cortisol, but that's because the adrenal glands can't produce them. High DHEA-S levels usually indicate an overproduction of androgens (unless of course you are supplementing with DHEA). This can be seen in combination with low cortisol if you have late onset congenital adrenal hyperplasia. It's pretty rare! I've done too much research on this stuff...lol

I just had a tilt test done at Cleveland Clinic and they do not use any meds! If you are having one done, tell them explicitly that you don't want the meds. When I made my appointment for Cleveland Clinic, I was told if my previous TTT used any types of medications, then the test was invalid. Since my doctor gave me nitro (for reasons I'll never understand because I was already tachying), the results were worthless to CC any way! I now know you are better off skipping the local docs and go to one of the major dysautonomia hospitals in the country. Save yourself the hassle of being given wrong tests, inappropriate drugs or flat out not getting the tests you need!

Going on DHEA before you get your adrenals figured out might be counterproductive. DHEA and cortisol counter one another, so you are probably lowering your cortisol even further. You said that you know you have bad adrenals. What sort of tests did you have done to know this? If you get chronic kidney stones have you ever had your parathyroid (PTH) with calcium and vitamin D tested? Has your calcium ever above range?

Textbook Addison's makes people develop a very dark tan all over their body as if they were going to a tanning salon every single day. I've heard of some people getting some blotchiness on their face. I personally had pigmentation in my joints. I assume it was from my adrenals, but I really have no way of knowing. The reason you get pigmentation is from an elevated ACTH level which stimulates MSH.

I couldn't handle the treatment I was getting by regular docs, so I went to a hormone replacement doctor. I feel pretty strongly that I would have failed a stim test though. I had some dark pigmentation on my skin and my ACTH was above range too. Yes I am on hydrocortisone and florinef. Currently i am taking 20mg of HC daily split into 3 doses (10, 5, 5) and 1/2 tab of florineff (0.05mg). If any of you have had stim tests done and were told you were "normal", get a copy of them and look at them yourself!

Hello, I have adrenal insufficiency, gluten intolerance and POTS. I will go out here on a limb and say that there's probably a good number of people on this forum with what I call "gray area" Addison's disease or adrenal insufficiency. Doctors won't diagnose you with Addison's disease unless you fail a stim test and the problem with that is "failing" a stim test is different depending up which endo you see. Some endos say that as long as you double or reach a 20 (no matter what baseline you start at ) that you are normal, but that is not true. Not everyone has primary adrenal insufficiency. In secondary AI, your pituitary does not signal enough ACTH to stimulate the adrenals. Therefore during a stim test, you'd have a low cortisol baseline that increases 3X+ at the 60 minute mark. This shows your adrenals were finally given the appropriate amount of ACTH and can produce the appropriate amount of cortisol. Secondary AI needs treated as much as primary AI. Basically it comes down to the fact that most endos don't even know how to interpret their own tests. If you do go down this route, make sure you get copies of your stim test. They say nearly everyone is normal unless your stim results are really obvious like a 5 to an 8 in 60 minutes and you have a very high ACTH level or tanning on your skin. Here's a great Addison's forum, you can post your results and questions. I'm not sure if you are a male or female, but I can't take more than 12.5mg of DHEA without getting facial hair, acne etc. 25-50mg would be a large dose for a woman. Now with all of that said, my POTS has not be cured with hydrocortisone and florinef. The fatigue is better. I can withstand a lot more stress and I am not wiped out for days after a little exercise or a tilt test. My heart rates are still crazy (~160) when I stand up though. Good luck to you. Some people on that forum I linked were actually misdiagnosed with POTS and were completely cured after treatment! I was not one of those lucky people.

Nervous...I go to Cleveland Clinic tomorrow!

I tell all of my doctors that an SSRI or any type of antidepressive/anti anxiety isn't even an option. I won't go down that route because 1) I know I'm not crazy 2) I know I'm not depressed 3) Once you go on those meds a lot of them are difficult to get off of. Anymore I'm pretty mean with doctors! You just have to be assertive. Don't allow him/her to make you feel like a kid in the office. Some doctors get off on that stuff I swear. I see them talk to 50 year olds like they are 4. It's sick.

A serum B12 level of 178 is way way way too low. Anything under 350 should be investigated further. If this doctor doesn't order you injections (regardless of the intrinsic factor results), then find one that will! You need them!! Also check out the book, Could It Be B12? An Epidemic of Misdiagnosis. It's a really good book/read. You will find it interesting. The numbness and tingling will likely go away once you get a few injections. The book talks about how to test for B12 after you've supplemented it too. Serum B12 levels are artificially high once you supplement with it. There are some amazing case studies in the book too. good luck

Bending down to pick up laundry off the floor is just awful for me. Even carrying hampers down the stairs is enough to keep me on the couch for an hour. Some days are worse than others! The laundry tends to pile up because I never feel good enough to do it

Taking these drugs may increase your fracture risk according to a new study. http://www.medscape.com/viewarticle/722442

Another thing we have to consider. Even if we eat healthy, that doesn't mean the nutrients in those foods are actually being absorbed or assimilated for use in the body. I'd love to see the POTS researchers do extensive nutrient testing. Maybe there's a common denominator for a group of us.

^Yes that is true too. I didn't even think about that.

From what I've seen biopsy aren't that accurate if they don't take enough samples or if they take them all from the same place. Let me try to find a link about it....I'll edit my post. Here's a link to a celiac forum http://www.celiac.com/gluten-free/topic/12...6cb02fa813c694c Here's an article talking about the problems with biopsies. http://www.celiac.com/articles/25/1/Suppos...u-do/Page1.html In my opinion since you have a positive blood, I think that's pretty conclusive. You should go GF.

Do you know if these restaurants watch out for cross-contamination. If your food is made on the same grill as the gluten food, then it's not safe. I'd think at a Mexican restaurant they are scooping the meat with the same spoon over and over again, so you'd be getting some wheat in that even if they serve it on a corn tortilla for you. I'm pretty strict/paranoid when it comes to the GF stuff. There' s a PF Changs about an hour from us so we might have to treat ourselves one of these days! I've made some of the GF breads before I also took yeast out of my diet. The Bob's Red Mill aren't too bad. If you are looking for a good breakfast bread, I like their cinnamon raisin mix. Some of them don't work with egg replacer though (I use Ener-G). I haven't been able to find a good sandwich bread yet. Most of the ones already prepared have yeast, eggs and or dairy in them. It's depressing!

Baking GF stuff is awful because of the other food allergies/intolerances I have along with the gluten problems. Since I can't eat eggs, dairy OR yeast there really isn't anything out there that's feasible. Milk still makes me ill unfortunately about 2-4 hours later and the next morning I'll have diarrhea multiple times. Same goes for yeast. I haven't had any eggs, so I can't say what sort of reaction I'd have with them. I hate food sensitivities! lol Some nights I just dream of ordering a Papa John's pizza with extra cheese and tomato sauce (can't eat tomatoes either) with some cheese sticks LOL

I don't know if you live by yourself or not, but you have to get rid of all condiments or anything that someone may have used a knife or spoon to spread on wheat bread (jelly, relish, ketchups, mustards etc). It sounds crazy, but even that tiny amount of exposure will keep you from seeing the benefits of a GF diet. You will also have to get a new toaster, cutting board, pasta strainer etc. Basically you need to treat gluten like it's the plague. I can't say that it is easy. Basically going out to restaurants is out for us, but we live in a relatively small town so there are NO options. Just ordering something you think is GF is not good enough. Family gatherings and social outings are always very awkward too. I have found that you can't trust other people to make food for you, so you'll either have to stop eating at those places or bring your own food. We don't replace what we've given up except for pasta. If you try to eat GF pizzas, cookies, cakes and bread at every meal it's going to be very expensive.

Yeah when you first start down this journey, that's what it feels like. Every doctor just tries to wipe their hands clean of your issues by telling you to go to another doctor for symptoms x, y, z. Then you get that new doctor and he tells you to go to another doctor for symptoms x and z. =/ Honestly I still feel that way at times.