CharmedLinz

Thank you all for the input. So nice to know I'm not alone in this department either. Had an appointment with my Allergist on Thursday and asked him about all of this and if the Mast Cell stuff could have an effect. He said he would do some research about the HPA axis stuff. But he did know that there are certain allergic reactions that can happen because of unbalanced hormone intake. He said more often then not for people like the above if they get off of Estrogen and just take Progesterone the problems subside. But in his words (love him), "this is easier said than done". Everything has a catch, good and bad to everything we stick in our bodies.

Not sure how much help this will be for a kid, but what I tell people that would have no idea what any medical terms mean is this...... They ask "what is dysautonomia" I say well it causes a lot of symptoms but basically I feel like I have a really bad case of the flu pretty much all the time, and I never have any clue as to whether I will feel good or not at any given time. For people that understand a bit more I just say that my Homeostatis is Whack, including BP, Heart Rate, Temperature. Ooooh and i just thought of an even easier one for a kid.... just tell them that everytime you stand up you get a wicked head rush that just won't stop.

Thank you both for your input, it's very much appreciated! Nice to know I'm not the only one who's body doesn't seem to like hormones. I just wonder what exactly it is that causes the problems. The Mast Cell stuff or the Feedback loop stuff....hmmmmm

Very Very interesting question and extremely interesting answers!!! This just goes to show me that more and more things seem to be linked up somehow. I have been ill since birth, on and off things through teen years. Only got to the disabling unable to work point in June of 2009. Have a Cousin on my Maternal side who is 2 years younger than me who was diagnosed at age 14 with POTS. As things have been found with her and me, my Family has started to look back at my Mother as she was sick growing up, and now we are seeing that my Maternal Grandfather had eerily strange symptoms as well. Unfortunately he died in 2009 so we can't test him or ask anything we don't already know. On my Paternal side I am 75% German and 25% Danish. On my Maternal side I am 50% German and 50% Scottish. So here's something new to throw into this question, how tall is everyone and their families??? What type of Connective Tissue Problems might be going on? I am 30 and 5'11". I am the shortest of my affected Cousins. I have been told I have some type of Connective Tissue Disease but it is not believed to be EDS or Marfan's. My joints are not hypermobile, rather they slip in and out of place quite easily. My Cousin with Dysauto dx'ed at 14 is 6'1" and her Brother with MVP is 6'6". My Mother is 5'9" and we now believe she had and has Dysauto and POTS, though she can cope pretty well, we think her body adjusted as she grew up. My Grandfather was 6'4" and we truly believe he probably had Marfan's. He became disabled in his early 40's and diagnosed with Ankylosing Spondylitis. Had multiple heart problems but ended up dying from prostate cancer that entered his bones. His Mother was pure German and was easily 6'2" was never healthy and died sudddenly and early in her late 50's. Another question to throw out, what about the HLA-B27 gene associated with a bunch of autoimmune issues. My Grandfather had it, my Mother is positive for it, as am I. Anyone else??? Now for my Father's side of the family that is mostly german, again all very tall and spindly people. I believe my Mast Cell problems come from this side of the family, as well as my thyroid issues. There have been 8 females on his side of the family that have had their thyroids either biopsied or removed (most back in the 50's). I think I got the double, triple, or quadruple whammy from all sides of my family. I happen to eerily look like the identical twin of my Maternal Great Grandmother who died in her 40's due to kidney problems. She bore 5 girls; one died at 25 for unknown reasons but was never healthy, the other 4 died in their 80's but respectively had.... Hashimoto's, Adrenal Insuffieciency, Diabetes and Kidney Failure, and Acute Pancreatitis. Now go figure, looking at my Father's side with all the Women with thyroid issues, every single female that had/have thyroid issues lived or is still living into their 90's. Well that was fun. Anyone know a genetic researcher we can forward all these answers too???

Well if you are hydrating the way we are all supposed to do, you might not get anything white. I hydrated really well before my barium Gastro workup and again like crazy for 24 hours after and about 2 days afterward I started to have slightly grayish BM's for almost 3 days, but they were never truly white. Called my Gastro and he said it was because I was hydrating so well, that it was a good thing that it didn't all come out at once, white and hard. I was worried as my dog had had a barium procedure and she drank like crazy and a day later pooped white clay and she was miserable. I was soooo happy that didn't happen to me. Hope this helps a little, good luck!

Been away from the forum for awhile. Still reading, just not posting. Huge long story but my health is declining rapidly. My case is currently being evaluated by the Mayo Clinic in Rochester to see if they will accept me on a Research basis, but it's not looking good. My Doctors here are all at the end of what they can do, all 8 specialists and another few who I no longer see. They all just keep saying I'm too complex for here and need to be seen at the Mayo. I need them to sign a petition! Anyway the main thing now other than the Dysauto, most of the Docs agree that it looks like I have PolyEndocrine Failure, they just aren't able to give a 100% diagnosis here. Basically all of my Endocrine system is shutting down little by little, and I have a million little things all pointing to other autoimmune problems. Right now though I'm wondering if any other Dysauto people have any problems with Hormone Replacement??? I seem to be unable to absorb Estrogen correctly and though I have Adrenal Insufficiency and NO Progesterone every time I try to take meds for it I have an extreme stimulant reaction. I've talked to an extremely knowledgeable bio-identical hormone Pharmacist who has gone over the Steroid Pathways with me and while she's sure that I'm not absorbing things properly she's not sure what it's due to. She decided to have me try Pregnenolone instead of Progesterone or Cortef since the Pregnenolone will get changed to whatever I need it to be in my body, tried it the last 2 days in a small dose of 10mg. and I really don't think I can try it even once more. My Cortisol is in the toilet, was 1 after surgery in June, up to 4 a month later, and 8 recently. All my Docs, especially Cardio want me on 20mg a day of Cortef, but I can barely tolerate 2.5mg in the morning. Could it just be the screwed up Feedback Loop from Dysauto that just can't handle the hormones??? Could it be the Mast Cell Stuff? I know I have a Mast Cell Problem, docs just aren't sure what type exactly. I seem to have the most bizarre and severe reactions to small amounts of just about anything. Except for Sedatives and Benzos and things that affect the nervous system. Those I can take in horse size doses, almost literally. They couldn't put me out enough with Versed for a colonoscopy, was awake for the whole thing. For my Hysterectomy the Anesthesiologist (spelled wrong i know) was awesome and knew more about Dysauto than anyone I've seen. He also said it took a lot more than normal to put me out. For the Dentist, 30mg orally of Valium just barely takes the edge off and I'm able to walk out completely fine, they just can't believe that I'm not the slightest bit tipsy from it afterwards. I barely have a reaction to my daily Klonopin (0.5mg time 3/day) and barely any reaction to constant antihistamines for the Mast Cell. So is this the Feedback loop reacting wrong, or the Mast Cells over-reacting, or is the Neuropathy just affecting everything??? Anyone have any input or suggestions or have similar problems with Hormone Replacement? Thanks in advance!!

Sarah, Is there any timeline for when the case reports have to be submitted by?? I've been off the forum for a few weeks due to surgery and another member just alerted me to this study. It may take me some time to put together my report as I'm not real comfortable sitting at the computer yet. However the surgery did give new evidence to support my Rheumatologists theory that I do indeed have a connective tissue disorder along withe everything else. Also now being tested for PolyEndocrine Failure. Please let me know if there is a date I need to get the report to you by. Thanks!!!

If you can get the test ordered again you need to totally fast salt of all types for 24 hours prior to the test. It should also be tested no later than 8AM just like Cortisol and you should be up and around for 2 to 3 hours before your blood is drawn. The lab should have an upright and supine range result. If you have it tested again and it is still only 4 when fasting all salt and sodium, then yes it is low. Renin is usually ordered at the same time. So far I've seen 5 Endocrinologists who haven't batted an eye at the low levels I've had. Luckily my Cardiologist put me on Florinef for the Dysautonomia.

Florinef is a touchy drug for a lot of people but it seems to be a fairly mild and basic one for our bodies to tolerate. I have some type of Mast Cell disorder, doctors I've seen won't really classify it as MCAD but I think it is. I react horribly to most medications even at tiny baby doses. I can't tolerate Beta Blockers, SSRI's, or Midodrine. When I started Florinef I dosed on the advise of an Adrenal support group. 1/4 tab for 2 weeks, then 1/2 tab for 10 days, then 3/4 tab for 10 days, then 1 tab for at least a month before seeing if I felt I needed more. I've now been on 1 1/2 tabs for over a year. I take 1 tab in the morning and a 1/2 at 3pm. I tried bumping up to 2 tabs and was not able to tolerate that amount. My Cardiologist has actually asked me to get to 4 tabs a day and I said no way. His reason being is that my BP even on 1 1/2 tabs will not go above 100 systolic and since I don't tolerate midodrine he said try more Florinef. I can't go by the headache sign that I'm taking too much, though many people do. I've always had headaches almost constantly. My PCP told me when my ankles start to swell I'm taking too much, that hasn't happened yet so no worries. Florinef is a mineralcorticoid and basically mimics Aldosterone in the body. For example before Florinef my Aldosterone and Renin were below level on lab tests. I'm also Adrenal Insufficient so this isn't overly surprising. A year after being on Florinef my Aldosterone and Renin levels were checked and they were suppressed down below the detectable range, which shows that the Florinef is acting to replace my Aldosterone. I have both good and bad results from the Florinef and there are days where I think of quitting. The Pros........ I can usually get through a night with only 1 pee break, it used to be around 7 times a night. I now only drink around 3 liters of liquid per day, it used to be 5 or 6. I now only urinate around 4000ml per 24 hours, it used to be around 7000ml per 24 hours. My feet and hands used to be so cold that I would have a heating pad on 24/7 and the cold would still be painful. I can now go around most days with no socks on in the house and barefoot. It did lessen the nausea enough that I was able to put back on ten of the 20 pounds that I had lost when I got really sick. Though the nausea is still present 24/7 it's not so bad constantly that I can't eat at all like it was. The Cons............... It has greatly increased my evening agitation and anxiousness. It's made me very crabby, especially at night, feels like too much adrenaline. It's worsened my PMS. I now have insomnia and when I do sleep it's not a deep sleep. The cons are bad enough that I do have a lot of times that I want to stop taking it. Then I remember how horrible it is to pee 7 times a night. As for weaning off, if I stopped taking it I would have to slowly wean off because of the Adrenal Insufficiency. Quitting Florinef stresses your adrenals. If you have healthy adrenals it shouldn't cause a problem. If your adrenals are weak or struggling it might be too much for them to handle quitting Florinef cold turkey. Hope some of this might help or give some insight.

Hi AZ Girl, Thanks for the info, I tried to send you a PM but your inbox is full, can you PM me with more info for your Doc. Thanks!

Can't go into detail because it was a really bad day and I feel like crud but need some info. Saw a Neuro today who basically won't and didn't do anything but did order a 24 urine Metanephrine test. I was trying to get a diagnosis and/or tests for PAF, Autonomic Neuropathy, Small Fiber, or the Autonomic Ganglionopathy and was basically told it wasn't her area. I asked for Catecholamine tests and was told that the Metanephrine test was more thorough and was told I was wrong that the Cat tests include Dopamine and is more thorough for Dysauto problems and looking for PAF. So I now have an order for the 24 hour urine Metanephrine test.................Is this test going to show anything at all??? It's similar to the Cat tests so if my levels are high or low does it indicate the same things as would high or low Cat results?? Or is this totally pointless? Also while looking up the difference I see that you are supposed to avoid certain foods like bananas, vanilla, and chocolate, and meds for several days in advance, has anyone else done this prior to having their Catecholamines tested??? Thanks for any help and I'll try to go into more detail when I can. Sorry I haven't been posting but I've been steadily declining and the computer is very hard on the eyes.

The TraceMinerals Research company makes electrolyte powder packets that are very low carb/calorie and taste great. You can order them online at any of the vitamin places. And on really bad days when I need a big boost........Pedialyte or the cheap store version. Way more electrolytes than gatorade and there is some sugar/carbs, not much an entire liter only has 100 calories, but it's dextrose instead of sugar or high fructose corn syrup. The Pedialyte even comes in little single serve envelopes now like crystal light. Oh and another great thing to get your electrolytes back up is Coconut Water.

Thank you all for the encouragement and input on meds. Docs office got back to me today about the Zoloft symptoms and with the intensity of them after only being on it for 6 days told me to stop taking it and in a couple weeks we will try Lexapro. I'm thinking I might do ok on just the Klonopin to control the adrenaline but we will see. Looking4Answers: From what I understand Hyperadrenergic just means that your body over compensates for things by putting out too much adrenaline resulting in anxiety and agitation. For me, starting at about 4pm everyday I feel like I'm in a bad dream where I can't run away from something fast enough. I think someone on this forum once wrote that she felt like she was being chased by a bear. Which pretty much sums up the feelings. One question for you all.......... In the Dr. notes I got a copy of under the "Heart" category he remarked that I have Systolic clicks at the left sternal border slightly increased in the upright position compaired to flat position. Anyone know what this means??? He didn't say anything about it during the appointment.

Hi Everyone, Told you all I would write after my appointment at the MVP center in Birmingham. My appointment with Dr. Watkins was wonderful, he spent nearly 3.5 hours with me, what a difference from the 20 minutes I get here with my Doctors. Can't say enough about the whole clinic in general it was an awesome experiece. It was very much worth the long drive from New Mexico. My official diagnosis is Dysautonomia caused by Hyperadrenergic Neurocardiogenic Syncope. He doesn't feel I have actual POTS as my resting heart rate and BP are very low. Also said I have a sleep disorder, IBS, abrnormal GXT, and fibrocystic breasts and ovaries. So we're sticking to the Florinef but skipping a BB because of the low BP and Pulse and he added Klonopin to treat the adrenaline surges and Zoloft to treat the low serotonin levels. It's been a week and so far the Klonopin is helping but I'm having some strange reactions to the Zoloft. Any input is appreciated. He started me on 25mg once daily and I'm supposed to go up to 50mg after 10 days. I'm wondering if I should have started at half of the 25. It's making me very very emotional almost like severe PMS, can't stop crying and I feel very flat, just don't want to do anything at all. Anyone else have these things happen when they first started an SSRI?? Does it just pass after awhile and then starts to help? I do have a call into the clinic to ask about this but would like input from you all. Thank you all for being here it's nice to know none of us are alone.

Thanks for all the input. Guess I will give the Toprol a try and see what happens. If it doesn't work I think I will ask to try the Propanolol next. I've been reading how they all work a little differently and some of them lower Renin output which I already have below normal level Renin levels so maybe that's why the bad reactions happen. I do what I can to try and help keep my BP up with some coffee (don't tolerate much caffeine) and lots of sea salt, I know I need more Florinef as well but I can't up my dose until they put me on something for the anxiety/agitation which has gotten worse on the Florinef. I do have Midodrine for the BP but it gives me such horrible headaches that I can't tell if it's helping anything else. My Cardiologist said I could try doing the Midodrine with the BB to see if they can counter act each others bad side effects, but he made me nervous by saying that I shouldn't be alone when I try this and that it could be a miserable few hours if they counter act each other too much. My reactions to meds are strange, I know alot here have the same problems. Makes it even harder to try and treat ourselves. Hugs to everyone.

Yup it sure is interesting to theorize all these possibilities. I worked as a vet tech so I was around most of the same cleansers and chemicals as those in medical facilities. I also worked as a Lab Courier transporting human specimens so I'm sure I came in contact with alot of things doing that as well. As for the circadian theory, I've worked 2 graveyard shift jobs as well. My Cousin with Dysauto is an RN but she was diagnosed when she was 15, long before she knew she wanted to be a nurse.

I'm on Florinef and my Cardiologist originally tried me on Atenolol, half of a 25mg pill once a day. He started low because he knew I have really potent reactions to meds. Well the half of a 25mg pill didn't go well, within an hour I was horribly dizzy and nauceous way more than usual and extremely short of breath. So he said to try a 1/4 pill twice a day. I did that for 2 weeks which got rid of the severe side effects but after 2 weeks my hair was falling out in massive handfuls, my hand and feet were frozen solid and I was developing severe edema throughout my body. My BP and pulse were dropping too low. I was also getting small hive like rashes. It did help the chest pain/palps and relaxed some of the anxiety. So he took me off of it and now has prescribed Toprol XL at 1/4 of a 25mg pill once a day. I haven't taken it yet as I'm nervous it will do the same as the atenolol. My BP is already low most of the time anyway, usually 80/60. Have you all found that certain BB's have less side effects than others for those of us that are so medication sensitive??? Or is it just a game to keep trying different ones until you find one you can tolerate???

Welcome.........I'm new here too and already love the people here. I'm surprised at how many posts I've read that sound just like me, something that I myself would write about me. Yours is one of those posts, your words could have come straight from me about how you feel emotionally and physically. I don't have any answers. Be grateful for your family and that you do actually have a diagnosis and a doctor who is helping (still working on mine). It doesn't seem like much, I know on really bad days I have a hard time finding anything at all to be grateful for. Like you I was a very active person until last year and now I can't even work and on some days getting up to use the restroom is a chore. Maybe in time more research will tell more about all of this and we'll all be able to get more help in feeling better. Hugs.

Hope people have told you all before how great everyone here is..........and smart cookies too!!! I've actually been reading about the whole system regarding renin, aldo, and angio and how they play a role in the HPA/HPO axis, I think it's amazing that those of us who are living with these symtpoms can easily see the connections between all of this but I've mentioned it to doctors who just go blank. If I felt well I'd probably go get my degree in something so I could go into research. I keep thinking someone will find my case interesting enough to experiment and do some research on me because as much as I hate to be living it, I think I'm a very interesting case........and it seems I'm not the only one which means there has to be validity to it. Anyone know where you can sign up to be a guinea pig?? I'd sign up for just about anything if it meant I might get some answers. My DI symptoms also seem to change daily and are always the absolute worst right before I have a menstrual cycle. Almost all of my symptoms are worse before a menstrual cycle which are pretty much impossible to calculate so at least I do get some warning signs when I might actually start a cycle. I'll look forward to the new ADH test as right now I've never had it tested since the Endo's here won't order it because the labs here won't perform it correctly. Hi Lieze...... Thank you for your input. The malnutrition thing was just an easy brush off for that Endo I think. He said he had seen my symptoms and women just like me when he went to Cambodia. His exact words! Trust me I know I'm not eating like the people there who probably have not many options of a varied diet. It doesn't help that my whole family is very tall and thin with gangly arms and legs so we always look way thinner than we are. The Florinef has helped the nausea a lot so I've actually been able to gain about 8 pounds since the end of February. 6 more pounds and I'll be back up to my healthy weight. My diet has always been extremely healthy......I try anything and everything to try and feel better.....plus I have high cholesterol from the low thyroid and constant fluctuating blood sugar levels from the dysauto no doubt (I don't have diabetes)................ but I had gotten to the point earlier this year with the nausea that I had gotten a little too thin because so many things were making me sick. They acted like I was sickly thin but I was not underweight based on the BMI scale which doctors seem to rely so much on. My diet for the past several years have consisted of mainly whole foods and lots of fruits and veggies and whole grains and lots of yogurt. I stopped caffeine a few months ago, totally stopped the little bit of alcohol (1 cocktail on the weekend) I did drink about 2 years ago, and also totally gave up any type of fast food restaurants several years ago. I get most of my protein from beans and yogurt as meat started bothering me last year when the nausea got real bad and meat still seems to be just too much for my system to deal with, though I do some fish. Talk to you all soon.

Thank you all so much for your replies, seems horrible to say this but I'm glad I'm not alone in this. I'll add some more info from some of what you all said......... TXPOTS.... When I mentioned low hormones I was being general but I'm glad you mentioned this, seems we are very alike. I have had renin and aldosterone tested both are low below normal ranges even after a 24 salt fast which is supposed to raise them. I've also had the serum and urine osmolality tests. Urine after a 12 hour water fast was 139, range is supposed to be above 800. The 2 endo's I've seen here are pointless and they tried to send me to the Mayo in MN for Diabetes Insipidus but my insurance denied. There is one Endo here who no longer sees patients and works in the lab who tried to arrange for a water deprivation test but the labs here are unable to do the proper testing. Luckily the Florinef has helped the DI symptoms somewhat. My insurance is sending me to an Endo who specializes in hormone and pituitary disorders but the appointment isn't until August. My labs all show that I have a possible malfunctionin pituitary caused by a hypothalamus disorder which sure makes sense to me since the hypothalamus controls both the Endocrine system and the Autonomic Nervous system but trying to get a doctor to consider that possibility is like talking to a brick wall, no one even acknowledges it when I mention this theory. MomtoGiuliana........ Thank you for mentioning your Thyroid troubles and concerns about mine. My thryoid levels have been on the low side for years. Back as a teenager I had a doc who gave me a low dose of thyroid based on my low body temp, but he never followed up or allowed me to increase the dose so I stopped taking it. The 2 Endo's I've seen here both differed vastly, one said my thyroid levels were totally fine but my Cortisol showed adrenal insufficiency, the other Endo said my thyroid was low and my cortisol was fine. Neither was willing to treat. I'm now waiting to see a special Endo at a teaching hospital here but my appointment isn't until August, that's the soonest they could get me in. Thankful.............................. THank you for telling me about your TTT results and what they found. Firewatcher............ Thanks for bringing up the records. Not to worry I have everything! I've had to get a patient advocate and open a complaint to have some records revised because of some things that were entered inaccurately. I had to get the advocate because I couldn't get the Endo's I saw to get anything done, not even make an appointment. Since being unable to work since June all I've done is read and research and I feel like I know basically what is wrong with me but trying to get the doctors to listen or agree is nearly impossible, they seem to feel threatened or something when I act like I know what I'm talking about. We have a family friend who is a physician who says I'm like talking to a 4th year med student. Isn't that sad that we all have to become so educated just to try and receive help. Potsgirl....... May I ask how you received the POTS diagnosis then? This is interesting to me. Thanks. Simmy.............. I did order one that has the strap, I figured it was probably better. And thanks for the tip on the shower chair that's a good idea. And yes raising the arms to shampoo on some days is nearly impossible as my arms feel like wet noodles.

Thank you both, you made me feel better already. I just oredered a wrist heart rate monitor so maybe that will help tell the tale, I'll keep a diary of what happens standing and sitting. Right now I only have my pulse when I take my BP while I'm sitting and my pulse is usually in the 50's or 60's. It will be interesting to see what it does when I stand. I have also read about POTS being heart rate over 120 but I'm wondering if it needs to go up that high on someone who normally has a low pulse like mine is. Don't know if it matters or not but during the stress test it went up to 160 and the highest my BP went was 117/80 (started at 90/60). I went for 11 minutes on the treadmill then HAD to stop couldn't take anymore, they had me at 3.5mph at 20% incline. I usually feel the worst after showers. I think my blood must pool in my legs as when I get out I have bright red splotches all down my legs and my feet are completely red and it takes almost 2 hours to completely abate.

Hi All, My name is Lindsay and I'm new here. Been reading for quite awhile but I'm ready to post now. I'll be a bit brief to start, long stretches on the computer I don't do well with. I would like any input you all would like to offer and if you have any questions feel free to ask. I'm 29 years old and don't remember ever feeling well, though until last June I coped with life ok. In June of 2009 I had to quit working and since then my symptoms and health have gone rapidly downhill. I have a cousin with POTS who was diagnosed 10 years ago and my symptoms almost mimic hers though she is able to cope with life tasks right now on several meds and was diagnosed at age 15. I've been to 2 Endocrinologists who labeled me as malnutritioned with an anxiety disorder and a vast array of non-diagnosable symptoms, along with labeling my lab results as weird. Been to a good Neurologist and had an MRI which showed some venous anomalies and small non-contrasting white matter lesions of the left hemisphere but the Doctor felt my MRI was basically non-conclusive. Though she is a helpful Doctor she knows nothing about Dysautonomia at all. I finally found a Cardiologist who would perform a tilt table test which was positive! Finally something showing that there is actually something wrong with me. I would like your opinions from personal experience on my TTT results....... I started out flat with pulse in the 60's (normal for me) and BP 90/70 (normal for me is 80/60) at a 70 degree upright after 5 minutes I started getting symptoms of the typical nausea, tingling hand and feet, dizzies etc. At 10 minutes I was almost passing out and at 15 minutes they put me back down again. My Heart rate had gone to 115, Blood Pressure dropped to 40/17. As soon as they dropped me down my pulse dropped to 50. I spent the next three hours in the cardiac recovery unit being stabilized. The Cardiologist I'm seeing is great, he at least knows what POTS and Dysautonomia are though he is NOT a specialist and admits it, we don't have one here in NM. He started me on Florinef which has helped a lot of the smaller symptoms. We tried Atenolol but stopped it as my side effects were too severe. What I don't understand is that the Cardiologist insists that i do NOT have POTS. I'm not so sure, my symptom list mimics the list posted here on DINET, there are only 2 symptoms on the list that I don't have. Other than the TTT they don't seem to be able to aggravate my orthostatic intolerance at the doctor's office. I always get very anxious and nervous about appointments which I think hides the signs. I have taken in my pressure monitor which records my readings to show him that my normal BP and pulse are considerably lower than what they are when taken at the office. So he's unwilling to make a hard fast diagnosis, right now it's possible autonomic disorder or syncope (I've never compleltely fainted.). He also doesn't know about the anxiety involved in dysauto and my anxiety level has skyrocketed with all of this stress and for some reason has gotten even worse on the Florinef, the one draw back to taking it. I believe I read a post recently here where someone likened the anxiety feelings to being chased by a bear, Bingo, exactly how it feels! The Cardio doc is now sending me to Dr. Watkins at the BHam Center where my Cousin was diagnosed. I'm hoping that maybe I will finally be able to get a diagnosis there instead of just the "vast array of symptoms", or "it's all in my head theories". But I'm now so leary about appointments that I'm nervous even about the prospect of going all the way to Alabama from New Mexico, what if it's a wasted trip. The TTT is the only thing that has showed anything. Echo, Stress Test, and Cardiac event monitors showed heart function is normal. The only other things abnormal are some lab results.... low thyroid, low hormones and urine output is very high at 6 liters for 24 hours, though that has gotten better on the florinef. I would really appreciate any input you all have or advice. As I'm sure you all have felt before I'm just really afraid to hope anymore and going to the BHam center is about my last option. That's all for now, I'm sure I've left out important things but will be posting again soon I'm sure. I'm glad you all are here and thanks in advance.