Body Mass Index Poll (bmi)

[MissPatient20]

Weight is a huge issue for me. I'm severely underweight and have terrible GI issues. I was just wondering if anyone else has this issue and how it has affected their POTs or dysautonomia. I think it plays a huge role in mine. Please feel free to comment and elaborate on your poll votes and information.

If you don't know your BMI, calculate it here:

http://www.nhlbisupport.com/bmi/

[potsgirl]

A BMI of 25 (24.9) is the top of the range for 'normal weight' people. I worry about the accuracy of the BMI, since it doesn't take into account how muscular people are...It's a good tool for weight 'ranges' but not an absolute. Anything under 18.5 is 'underweight', and the poll starts at a very low number (13 and under!) I would have to weigh 85 pounds at 5' 8" to have a BMI of 13 - ouch! 125 would be the lowest 'healthy' weight for me. 85 pounds would probably place me in a hospital for intravenous feeding - I've been through eating disorder rehab in the past....

Cheers,

Jana

[jump]

Being underweight exacerbated my POTS symptoms. I am now a healthy weight and I find my symptoms are not as severe as they were when I had a low BMI.

I also had some absorption issues because I have a gluten allergy. Before it was diagnosed, I had a lot of GI problems, but vitamin deficiencies never showed up in my bloodwork, and I did not experience the classic wasting effect of undiagnosed gluten allergies. However, once I did get diagnosed and stopped eating gluten, I noticed a BIG (positive) change in my POTS symptoms. I suspect that poor nutrition was adversely affecting everything, even though it wasn't severe enough to show up in tests.

[Sunfish]

i'll come back w/ my own response in a bit, but i agree that the numbers on the poll are not likely to give any sort of "real life" picture of members. polls on the forum are never official, scientifically accurate, etc. but BMI options across a more realistic spectrum would likely give at least somewhat of a better picture of where members fall on the underweight/ average weight/ overweight continuum.

misspatient if you would like me to change the poll options to better reflect the overall balance of individuals (i.e. options for severely underweight, underweight, average range, slightly overweight, etc.) let me know and i'll be happy to do just that. it wouldn't take away from what i think you're looking to glean from your question(s) and might in fact add to the depth & usefulness of the info you receive.

jana, i fully agree with you also that BMI is far from a perfect measure of size, weight, health, nutritional status, etc. but - however flawed - it unfortunately is one of the better solitary measures available at this point in time. more detailed info that encompasses what one's BMI "really means" is of course much more meaningful and can of course be added in comments/ discussion by anyone who would like to divulge/ explain/ detail their situation further. i know that i will do so myself. (along the lines of what you mention, i know that years ago when i was able to be more actively athletic the BMI calculations were horribly "off" for me as any representation of "health"; ironically now that i'm far less healthy i technically have a "better"/ "health" BMI but no one that knows anything about me past & present would dare say i'm healthier now than when super-muscled-triathlete-rower me wavered at the edge of "overweight".)

hope this helps,

melissa

[MissPatient20]

I agree with you guys, that BMI isn't necessarily an accurate picture of a person's nutrition or health. I do think it could be a marker though.

That's why I added the second question. I find it to be very interesting that so many people suffer from intestinal issues (according to the answers to the second question), so significant that it impacts their nutrition and their weight. I really believe that this illness can go hand in hand with that.

I've struggled with chronic constipation and delayed gastric emptying all my life, but didn't begin to have weight and nutrition issues until about 4 years ago. I developed POTs/Dysautonomia at the exact same time, and became completely disabled and debilitated by the condition 2 years ago.

I can really relate to what you're saying Jump. I have SEVERE food allergies, one of them being gluten. They've drastically affected my absorption which has manifested in a massive weight loss and loss of muscle mass. My BMI went from 20 to 14! Now it's 16.8. The interesting thing for me is that my nutrition markers are also normal, just as you said about yourself.

I wonder if things like intestinal infections could be an underlying cause. It could cause a snowball effect...intestinal infection leads to chronic digestive issues...which leads to nutritional deficiencies...which leads to fat and muscle loss...which ends up leading to issues with blood pressure and heart rate?

I know that I have chronic infections. I just can't seem to get my body to a place where it can tolerate treating them. Every time I try, the die-off/herx reaction causes a worsening in blood pressure and heart rate issues...so severe that I end up in the ER. I just wonder if I ever end up getting through treatment if my POTS and dysautonomia will be indirectly affected (for the positive).

I'm interested in those of you who noted having a BMI below 18...any of you want to chat? I'd love to compare notes.

[bizbiz]

I dont mean to take over this thread, but would somebody please be able to explain to my why (if it does at all), does weight loss affect POTS? A couple of times when someone has posted about their symptoms getting worse, one of the questions that comes up is "have you lost weight recently?".

[flop]

I am at the other end of the weight spectrum. Through my early twenties I was very athletic and had a BMI of 19 (with body fat of 11%). When I develped POTS aged 25 I suddenly became unable to stand up for more than 90 seconds so had to stop all active exercise. At that point my cardiologist even told me to stop exercising as being fit was lowering my BP!!

I fairly rapidly lost a lot of muscle mass and dropped my BMI to 17. At this point I looked awful (and people believed that I was ill).

I found that starting paroxetine aged 27 caused a big increase in my appetite and started off a weight gain. This was also badly affected by taking prednisolone for 2 years for severe asthma and allergies (which were making POTS control impossible).

I am now aged 30 and off steroids but very overweight bordering on obese with a BMI of 29.5 (due to fat not muscle mass). People say that I don't look as heavy as I am but I think that because of my ballet training I know how to stand tall and use my abdominal muscles to pull my stomach in.

Pre-POTS I was a UK dress size 10, I am now size 16 (US size 8 to 14).

I saw my cardiologist last week and he told me that I must loose weight. I was complaining of being intolerant of heat and sweating a lot - he said that the only thing that had changed in recent years was my weight so that has been given the blame for my temperature issues. I think that the heat intolerance is part of POTS rather than weight-related but I want to loose the weight anyway.

Despite the weight gain I still have a lot of GI issues. Bloating, cramping and diarrhoea doesn't necessarily mean malabsorption / malnutrition.

Flop

[kayjay]

I dont mean to take over this thread, but would somebody please be able to explain to my why (if it does at all), does weight loss affect POTS? A couple of times when someone has posted about their symptoms getting worse, one of the questions that comes up is "have you lost weight recently?".

I don't know about anyone else.... but when I first got sick I dropped 25 lbs without trying and I just had a baby. One week after my daughter was born I was in my regular clothes and eating cheese cake. I remember my husband telling me that I looked like an "Ethopian"- sorry if that is not pc this was 11 years ago and as children of the 80's we are imprinted with the memory of first learning about people starving in Africa.

Anyway- I have hyperadergenic pots. When I have a flare or am not on meds I can't keep weight on. This must be true for everyone with this kind of pots b/c when your body is working so hard you burn a ton of calories. Also Hyper pots people tend to have bathroom issues because of those stress hormones.

Treating my pots has made my weight "normal" although I "feel fat" from being thin so long. I hope this makes sense. I know if I went off my meds ( And didn't die HAHA) I would lose weight really fast. "Regular" POTS people may be different.

[Maxine]

I lost weight also in the beginning, but once on wellbutrin I gained weight on just a baby dose. Without the wellbutrin to treat my POTS i'm on the floor.

An assistant to my POTS Doc had the nerve to put "obese" in my medical file. I was always quite thin most of my life, and at a normal weight when I crashed with my POTS in late 2000. I'm not happy about being a size 12 at 5ft. 4 1/2 in., but what can I do? I'm so limited now, and can't exercise nearly like I used to. My BMI did not qualify me as being "obese".

I ended up very thin again after losing the 25 pounds. I ended up gaining back the 25 pounds, plus another 15--- .

I'm absolutely petrified of my medical treatment being compromised due to judgement on my weight----because I'm no longer wafer thin.

I've seen people actually end up with tragic consequences because they weren't taken seriously. One person being my mother, and another my close friend who just died in August.

I'm bitter, and I DO NOT think BMI has EVERYTHING to do with state of health------and doctors need to get this-----------------LOOK AT THE FACE OF HIS PATIENT, AND LISTEN TO THEM!

My mother's health concerns were blown off for years. I finally got the courage to look into one of the three envelopes of her medical records, and as far back as 2004 some of her CT and MRI results state nodules on lungs, kidney, and liver. They said neoplastic disease can't be ruled out. She found out less the 48 hours before she died she had terminal cancer. The last CT report----(the one they sat on for 2 weeks while she was put in PHYSICAL rehab the last week of her life to ger her "in shape" the last week of her life) said the cancer was in lungs, liver, pancreas, abdomen, abdominal lymph nodes, and bladder.

This report was read on Feb. 23rd, and she died Feb. 25th 2007-----(50 pounds lighter I might add). However, the recent medical notes close to the time she died said , "no weight changes". Of course many references to her "obesity" were in her file. She was overweight, and struggled with weight all her life due to thyroid problems------I guess BMI charts would consider her "obese", but She never seemed all that heavy to me. She wouldn't qualify for a gastric bypass. My friend was over weight too. She was diagnosed with NCS, hypermobile EDS, fibromyalgia, and other medical problems. She went to three different ERs with chest pain, very high BP, narrow pulse pressures, mid back pain, and alway blown off! She went ahead with lumbar back surgery a couple weeks later. she had an aortic rupture after her surgery. They tried for eight hours to save her life, and used the entire blood supply of that hospital which was out of town---(not one of the crazy ERs she went to here who would have just let her bleed out).

I REFUSE TO BE WEIGHED SINCE "OBESE" was put IN MY FILE.

I'M BITTER............

Maxine :0)

[MomtoGiuliana]

My BMI was around 18-19 most of my life. It changed with pregnancy. Now it is around 21-22. However, I do not believe in my case that weight or weight change had anything to do with developing POTS, for me--it was pregnancy itself that triggered POTS. However, POTS is often seen in tall, thin women from what I understand. The reason that POTS symptoms may intensify with weight loss has to do with decreased blood volume from what I understand--if you are thinner, your blood volume is reduced. Blood volume can be built by building muscle mass, another important reason for us to exercise, in many cases anyway.

[potsgirl]

Good point. My cardio keeps trying to get me to gain weight, because your body has a harder time functioning when you're underweight. It just adds another component on to getting to feel better.

[Maxine]

POTs is not necessarily in "tall thin woman" often............ Living in the same town Dr. Grubb works in I've met many, many folks with POTS----lots of them were of normal weight, slightly overweight, and some were more overweight. I do not use "obese"-----I think it's an UGLY word.

There's a lot of stereo typing with POTS AND EDS. If I would have listened to one doc who associated EDS with "tall thin woman" I'd be in a heap of trouble now...........

In fact most of the woman I met were around average height----, and quite of few short gals, and even a couple shorter guys.

Maybe 20% of the woman I met were considered fairly tall, but not all that thin. Some gain quite a bit of weight back once their POTS symptoms are stabilized.

My friend who died from a ruptured aorta from a complication of her EDS was only 5ft. 3in. She went a very long time without being diagnosed of her EDS---in fact she found out less then a year before she died.

When I was very thin--------I mean TOO thin, my pots symptoms were worse. However, when I first crashed very badly my weight was in the normal range.

Maxine :0)

[Guest tearose]

I don't keep track. I know when my POTS symptoms are more active I must return to small, frequent, warm, soft foods. I just go by how I feel. I have lymphedema though so I focus mostly on how foods effect the limbs and nerve pain.

[MomtoGiuliana]

Certainly POTS affects all body types. However, I know I have heard doctors say (including a dr who is interviewed on the topic that was running on youtube for awhile) that there is a tendency for POTS patients to be very thin--perhaps he was referring to POTS in teenagers. Elsewhere I have seen references to height and POTS.

[extern14]

I lost weight also in the beginning, but once on wellbutrin I gained weight on just a baby dose. Without the wellbutrin to treat my POTS i'm on the floor.

An assistant to my POTS Doc had the nerve to put "obese" in my medical file. I was always quite thin most of my life, and at a normal weight when I crashed with my POTS in late 2000. I'm not happy about being a size 12 at 5ft. 4 1/2 in., but what can I do? I'm so limited now, and can't exercise nearly like I used to. My BMI did not qualify me as being "obese".

I ended up very thin again after losing the 25 pounds. I ended up gaining back the 25 pounds, plus another 15--- .

I'm absolutely petrified of my medical treatment being compromised due to judgement on my weight----because I'm no longer wafer thin.

I've seen people actually end up with tragic consequences because they weren't taken seriously. One person being my mother, and another my close friend who just died in August.

I'm bitter, and I DO NOT think BMI has EVERYTHING to do with state of health------and doctors need to get this-----------------LOOK AT THE FACE OF HIS PATIENT, AND LISTEN TO THEM!

My mother's health concerns were blown off for years. I finally got the courage to look into one of the three envelopes of her medical records, and as far back as 2004 some of her CT and MRI results state nodules on lungs, kidney, and liver. They said neoplastic disease can't be ruled out. She found out less the 48 hours before she died she had terminal cancer. The last CT report----(the one they sat on for 2 weeks while she was put in PHYSICAL rehab the last week of her life to ger her "in shape" the last week of her life) said the cancer was in lungs, liver, pancreas, abdomen, abdominal lymph nodes, and bladder.

This report was read on Feb. 23rd, and she died Feb. 25th 2007-----(50 pounds lighter I might add). However, the recent medical notes close to the time she died said , "no weight changes". Of course many references to her "obesity" were in her file. She was overweight, and struggled with weight all her life due to thyroid problems------I guess BMI charts would consider her "obese", but She never seemed all that heavy to me. She wouldn't qualify for a gastric bypass. My friend was over weight too. She was diagnosed with NCS, hypermobile EDS, fibromyalgia, and other medical problems. She went to three different ERs with chest pain, very high BP, narrow pulse pressures, mid back pain, and alway blown off! She went ahead with lumbar back surgery a couple weeks later. she had an aortic rupture after her surgery. They tried for eight hours to save her life, and used the entire blood supply of that hospital which was out of town---(not one of the crazy ERs she went to here who would have just let her bleed out).

I REFUSE TO BE WEIGHED SINCE "OBESE" was put IN MY FILE.

I'M BITTER............

Maxine :0)

I completely understand why you are bitter. I would be bitter too. I am so sorry you lost your Mother and sorry you lost her this way. I am with you on the weight. I used to be really skinny (too skinny) and now I am the heaviest that I have ever been in my life. People tell me to exercise. Yeah, like it's just that easy. I try everyday to but there are days when I can only go 5 minutes instead of the recommended 30 or 60 minutes a day. It's hard. Plus, we have to eat so much salt and drink so much water that I feel like a water balloon! Try to stay a health weight with the amount of salt and water we take in! I hear you, hun! Just know you are not alone and just do what you can. The most important thing is to maintain your mental health!

[Maxine]

Thanks Kari----

momtogiuliana

Possibly teenagers------some of them being thin.

I really don't have 100% faith in everything that comes out of a doctor's mouth, and after seeing some of the things I have seen, or experienced myself, I'm very guarded. In my mother's case many mistakes were made by many medical professionals dropping the ball. She struggled with weight all her life, but she was never one to eat much in one sitting. She wasn't taken seriously years ago when her goiter grew, and her thyroid symptoms were out of control.

Not until her eyeballs started to pop out of her head did they take a second look. She lost weight, but not enough to look "wafer thin". She had to have her thyroid removed. She's never really had a fair shake with her medical problems.

Many people with POTS have GAINED weight because their hormones have changed. Some have associated chiari related conditions, pineal glad cysts, pituitary cysts, or have gained weight from their meds. Other younger pots patients have eating disorders, and their POTS symtpms improve when they eat and get to a healthier weight. However, some POTS patients can't eat because of their symptoms------------I've had this happen, and that's how I lost the 25 pounds.

My friend that died was very thin also until a supid doc pumped her up on steroids, and she got murcury poisoning. She gained weight, but exercised in a pool quite a bit. She followed what her doctors told her to do. She got sicker, and her EDS was still missed. I thought EDS was a possibility because she was pretty hypermobile, and when she had abdominal surgery/bowel resection (her wound wouldn't heal), I told her to go see my geneticist. She also had spine instability. She saw the geneticist and hypermobile EDS was diagnosed.

Michelle, you know her, she was at one of the local support group meetings you came to. She came with her husband. She was diagnosed with NCS at that time.

One teenager was treated poorly in her town by her doctor, and wasn't given much time at her appt. She has POTS, and of course she's overweight. She seemd so sad, and wondered if her symptoms were being taken seriously. Hmmmmm, shallow docs.........

I recommend poeple eat right, and exercise the best they can-----that's all you can do. I drink a lot of v-8, and avoid the wrong fats, and simple sugars. Need to work harder on chocolate---but still never eat a whole candy bar, but admit a little bit of this and that add up---- I know the calories and fat content in everything, and have always been weight conscience. My poor mother never really experienced a size 6. I did for years, and years. the only time she got smaller was when she tried a crazy liquid diet andwrecked her gallbladder. She took amphetemines on the advice of one of her doctors in the 60s and early 70s-----that nearly killed her. If he would have just tested her thyroid then.

Even when you feel your POTs symptoms at your worst----nibble on some cereal----little by little. If you don't eat, the motility will get worse.

Did I tell you how my sister in law was treated? How about her daughter who lost a full term baby? How about her husband who almost lost his arm from an infection? Both of these gals were overweight at the time---not so much now. Thank God my brother was taken seriously, or he may not have lasted as long as he did with his cancer. It was so sad as he suffered from cancer, and had to see his first grandchild still born because the doc wouldn't listen to his daughter. He died never being able to see a grandchild. The same sister in law almost had organ failure due to another ignorant doctor becuase her thyroid levels were next to nothing for an extended period of time before anyone caught it. She was really tiny all the years I knew her, and had sudden weight gain after the birth of her son.

I could write a book on negligent care from the medical profession, and more then half of the victims would be "higher BMI". Gee, could the weight problem actually be a RESULT of a serious health condition-----rather then CAUSING the health condition.

Tragically as I type this post they had a news flash on CNN about a man who sat in the ER with chest pain until he died, then two thugs robbed him of his watch while he sat in the chair DEAD.

NOT......"what's up Doc", how about-----"WAKE UP DOC"!

I know this is about POTS and BMI, but the whole picture needs to be looked at, and maybe, just maybe, they may even find the cause of some POTS patients.

Maxine :0)

[houswoea]

Wow! I thought I was underweight, but if I was BMI 14 (and some indicate they are) I would only be 85 pounds! I'm pretty sure my bones all weigh more than that haha!

But to answer the question, yes I have ridiculous trouble gaining weight, I just can't!! Every time I try and it works it all comes off plus some more. People are always asking me if I have an eating disorder I know people who are heavier often feel socially unexpected, but I feel this way too. I can't find clothes that fit. All my doctors attribute my issues to my (lack of) weight.

They always say "well, why don't you just eat?" and I just want to be sassy and say "ohhhhhhhhhhhhhhh, eat eh? I knew I was missing an important step in my life!"

I get frustrated, but no one ever wants to hear about how hard it is to gain weight, even though everybody talks about losing weight!

That's my ramble for you. If you figure out a way to get some back, let me know. I really hate that I can't wear any of my clothes.

[BloodMage]

I was 5'6" 165 when I was 18 years old. I think I already had a mild version of my weird symptoms back then.We had nasty well water and I NEVER drank water when I was that age.I decided to lose weight and started buying bottled water. I lost a massive amount of weight and that's when I started noticing my crazy pulse rate/dizziness when standing, etc. really go nuts.

Last year I was 114.I ended up in the ER and the nurses called me "malnourished" and thought I had an eating disorder or that I was a drug addict.This also happened in a medical setting a while before that, constant questions about "what drugs I was on".

After some very hard work with myself, i've mananged to get up to 120.My weight is such a crazy thing though, I don't want to balloon and get heavy again.I've experienced both sides of the fence on the weight thing.

[juliegee]

Miss Patient 20-

You say that you believe your GI woes are connected to your dysautonomia. I'm sure they are. Do your doctors doubt that? The medical literature is pretty conclusive. Your symptoms of delayed GI functioning and constipation are pretty classic for nerve damage in the GI tract. GI symptoms were huge for my son when he first became ill. It was very scary. He was 5'8" at the time and a mere 100lbs. The doctors at Johns Hopkins actually performed an antroduodenal manometry test while he was on the tilt table. Sure enough, at the point he fainted, he also vomited. The testing was able to prove, not only delayed movement in the Gi tract, but retrograde movement associated with autonomic irregularities.

Are you treating your slow GI tract? There are some effective GI prokinetics out there that can make a world of difference. My son is still unable to eat without them. Many also need to take something for GERD and constipation. If the food dams up anywhere in the GI tract, severe symptoms will follow.

As far as weight affecting POTS.....Yes, in my experience, it seems to be MUCH worse when underweight and/or struggling to put weight on. My son's GI issues came before his dysautonomia symptoms. I'm convinced that he probably had mild dysautonomia his whole life, but when his weight became precarious THAT set-off the severe dysautonomia symptoms. Calming down the dysautomia symptoms was a big part of allowing him to eat better. BOTH sets of symptoms need to be treated.

We learned at Hopkins that my son had a severe hypersensitivity to milk protein. AVOIDING that has helped both his GI issues & dysautonomia issues. Identifying allergies and/or hypersensitivities & avoiding that trigger is crucial. You say you have infections? What kind of infections? how do you know? Share so that we can try to help.

Now for my meanderings about weight... I've had mild unDXed dyautonomia much of my life and fairly severe GI issues. Most of my life, I was underweight- 120lbs at 5'9". I was in and out of the hospital often with GI issues. I was even counseled for anorexia during one hospitalization. Grrrrrrr. I was there because of the acute pain I experienced when I ate. I WANTED to eat. When I had my gallbladder out a few years ago, I had a strange reaction to the trauma of the surgery and was unable to eat much at all for 6 months and my dysautonomia was out-of-control. I understand what you are dealing with. It's frightening as you feel so weak, fragile, and have no reserves to draw upon. When I'm very thin, I am completely exercise intolerant and can barely function. Even taking a shower and getting dressed is hard.

When I finally got on an effective med regimen. I was able to gain weight and feel stronger. Alas, many of my meds are antihistamines which are notorious for increasing appetite. The treatment for my illness caused me to put on more weight than I ever had . At my heaviest, I was up to 150lbs- huge for me. I was more stable (symptom-wise) than when I was stick thin, but that weight brings it's own set of issues. Fat, itself, changes metabolic make-up and caused my hypoglycemia and dyautonomia symptoms to flare again. Through old-fashioned cleaning up my diet and moving more, a lot more- I am at a very healthy 130lbs now. My dysautonomia is stable and I am blessed to be able to exercise which improves all of my symptoms.

Weight is tricky for those of us with dysautonomia. Many, like you, struggle to put enough on enough weight to be able to function effectively. Others, who are blessed to have figured out a treatment plan, may inadvertently gain weight. Once heavy, some simply can't exercise due to extreme symptoms. Many are too afraid to try. I've been at both extremes and back again It's not easy.

My heart breaks for you, Maxine. Seeing those you love being disrespected, neglected, and mistreated by doctors charged to care for them....beacuse they were stereotyped as obese??? I agree that doctors need to look at the whole person and listen to our stories as all too often, the illness itself, and sometimes even the treatment they prescribe, can cause the weight gain or loss in the first place.

[avidita]

I am 5'7", currently 115 lbs after having to gain weight from 106. Before I got diagnosed with Autonomic Dysfunction, one cardiologist in Europe told me that am a "gracile type" and it was normal for people like me (read thin and tall) to suffer from lightheadedness, etc. Since my symptoms started I got from 120 to 106 over a period of time and was getting thinner and thinner, so I had to really pay attention to my food and make sure I eat enough calories. I generally feel better at lower weights, though. As an experiment, I tried to gain and maintain 125lbs beginning of 2009 and it was when I felt worst.

[Birdlady]

I think the underweight issue is a symptom of whatever is wrong with us. We aren't processing our food and absorbing nutrients properly, so we are constantly in a malnourished state.

[avidita]

I think the underweight issue is a symptom of whatever is wrong with us. We aren't processing our food and absorbing nutrients properly, so we are constantly in a malnourished state.

I am not quite sure about that statement. It might be true for some, but I got test happy when I was in Europe and other than a slight vit D deficiency (I stay out of the sun to ward off wrinkles) and slight Mg deficiency (only by 0.1, which is now normal), I didn't have any other deficiencies and I tested for a LOT of things. My B12 was actually twice the norm, not sure why . Also, as indicated by a lot of users above, many people gained weight after their diagnosis, so they must be absorbing nutrients OK....

[Birdlady]

Hi Avidita,

Of course it is not the same for all of us. If it were that simple, then we wouldn't all be here very sick trying to look for answers. Considering that the majority of Americans are overweight these days, I think the fact most of us are under 25 BMI is quite significant, so my reply was simply just a follow up to what the poll shows. We also have to remember that being a normal weight or even overweight does not mean you are not deficient in vital nutrients. People are eating more and more foods which lack any sort of nutritional value as their main source of calories such as soda or fast food for instance. I remember reading a news article years ago saying that they are finding more and more thin people have high concentrations of visceral fat around their organs. I actually found the article here http://www.msnbc.msn.com/id/18594089/

The other thing that spurred my comment is that the poll also shows most of us have digestive problems of some type. I think this is highly significant issue that doctors are overlooking.

I know that others don't feel this way, but I'm pretty much done with these so called POTS doctors. They aren't doing anything to help us get our lives back. Polls like this are great to see where we all stand and to see what problems we have in common.

The best test to get done to determine your nutritional status is through urinary amino acid and organic acid testing. Some of the blood tests for nutrients aren't all that accurate if you look into it.

[houswoea]

When I saw the "expert" at the specialty clinic, he said that gastro symptoms were not a part of POTS. He said that people have attributed it to POTS but it really was just a coincidence.

So... I guess my question is: is it just a coincidence?

[juliegee]

When I saw the "expert" at the specialty clinic, he said that gastro symptoms were not a part of POTS. He said that people have attributed it to POTS but it really was just a coincidence.

So... I guess my question is: is it just a coincidence?

NO!!!!!! See my post above.

Short version: my son had an antroduodenal manometry (measures GI contractions) during his TTT to positively make the correlation between his chronic nausea/vomiting and fainting. He barfed at the exact time his BP dropped to an immeasurable level. His docs at Hopkins said this was 100% confirmation that his inability to eat w/o nausea/vomiting was related to his autonomic irregularities. The antroduodenal manometry showed nerve damage in his small bowel. No coincidence!