Weight Change And Pots

[L4UR3N]

Trying to figure something out

[Hope]

Rissy, for that last question, I have changed my diet, but I think thats what finally slowed my weight loss. My food is now staying with me, and I think whether or not my blood pressure is low, that my elevated HR burns more calories. Of course, that's just what I'm thinking, I have no medical training.

[issie]

This would be interesting to figure out. I'd love to lose some weight - but, it seems to want to hang around - despite my efforts. I'm high bp and it seems my metabolism has slowed down. I'm also less active - but, I couldn't mark two of them. But, since I'm back on my feet from my really bad break (ankle) and being in a wheelchair for 5 months - I'm up and going and watching what I eat and still the weight is coming off very slow.

[E246]

Rissy,

My systolic falls but dystolic rises on standing So i filled in rises because it is more on the high side. Also i often have to eat to calm my symptoms eg in the middle of the night even though i don't want to and have put on weight but only a few pounds. This drops of each time i go through a bad patch - i seem to lose weight overnight.

[sue1234]

I have had POTS for 6 years, but my weight did not change for the first 4 years. Two years ago I purposely took almost all the sugar and half the carbs out of my diet. I have lost almost 30 lbs. over that time, but lost the initial 20 lbs. in the first 5 months of this new eating. The thing I find odd is, I was able to lose the weight while sitting almost all the time! Being sedentary would make it a challenge to lose weight for most normal people, so it makes me think my system must be hyped up like I feel with my hyperPOTS. Believe me, the only way I am burning calories is by typing on the computer!

[brethor9]

I have gained almost 30 pounds over the last year which has been horrible for my joints...because I am normally not over 112 pounds.....most of it is water related due to meds ie beta blocker, florinef, antihistamines....if I stop the meds or not hydrated properly I can easily drop most of the weight....its so frustrating you need the meds but the weight gain side effects cause their own issues......I am hoping the saline infusions will help and I can atleast stop the florinef etc

Bren

[jenglynn]

Interesting topic. I have OH- since October, actually a couple months after my DX, I've lost 51 pounds as of today- weigh 101 lbs. I checked other for the cause because one of the main reasons is just that I never have an appetite. I feel like my appetite sensor doesn't function and have wondered if that's controlled autonomically. I am just NEVER hungry. I drink supplements every day and try to eat as many calories as I can - but I also have early satiety- so just a few bites of anything makes me feel full. My sister had gastric bypass and that's almost how I feel... The way just a few bites fill her up. I could go days without eating and never feel hungry. Thirst is another story and I drink and drink all day long. The only reason I eat are because I set timers on my iPhone to remind me and a husband who is devastated watching me waste away so he often begs me to eat- but at my current weight- bones are very visible and it disturbs him so much- and of course I KNOW I need to eat and get enough calories to stay strong- but it is just so hard to force yourself to eat when you have no appetite and NOTHING sounds appealing,

I also almost always have tachycardia and it's rare- even lying down- for my HR to be below 120. If I am sitting upright, typically 150's. Any exertion- I crawl around the house to use the restroom, etc. it's almost always 190-200. I've been told by a nutritionist, dietician and cardiologist that this type of tachy does not change metabolism or cause weight loss. After three "experts" I still struggle with the thought that is not at least a factor. If my HR is almost always 120-200 during waking hours, how does that not burn calories, change metabolism, or cause at least some weight loss? I guess it just does not seem logical to me. Anyone else have experience with this or heard the same or differing opinions?

Jen

[brethor9]

Hey Jen

I went through exactly what you are describing when my adrenaline problems were out of control....I looked almost anorexic.....and my heart rate was out of control so I do believe that with all those things happening it increases your metabolism....we are prove of that despite what the Dr's say.....since I have gotten my HR more under control and started meds I have put on weight again so obviously there is a connection.....and my appetite is still poor so it has to be an endocrine issue

Bren

[jenglynn]

Thanks Bren!!!! I knew we were right!!! Sometimes just TOO logical to NOT be factual.

Thank you for replying- I've been told I look anorexic but I'm only 5'3 so I don't think I'm critically underweight...but there is improvement yet and I need a few more pounds to look even somewhat healthy. And I LOVE the doctor that put "anorexia" on my check out diagnosis summary- which before looking at it- handed it too my husband. I thought he would have heart failure!!!! "Honey, I promise- that's a medical term for loss of appetite- doesn't mean he thinks I am anorexic which is anorexia nervosa... TWO different things!!!" Thank goodness I had my iPhone handy to quickly reassure him... Sigh.

Jen

[L4UR3N]

The general consensus seems to be that POTS has changed our weights. I wanted to do this poll to see if there was any correlation between the type of POTS we have, and weight loss or gain. I assumed that people with Hyperadrenergic POTS would be more likely to gain weight due to the high NE surges and activation of cortisol on a pretty much continuous basis. People with hypotension do seem to fit more into the adrenal fatigue spectrum, which usually includes weight loss.

I would love to have so many more people vote to get a really good idea of what's going on!

[kayjay]

Medication is a factor for many of us. Before I was diagnosed I could not keep weight on. On medications since my diagnosis I have gained weight.

[L4UR3N]

Good point! I should have included medication in this list

[peregrine]

I said low BP, because, in the end, that's what the TTT showed right before they lowered me back down. But my BP fluctuates wildly when I stand, so it's not entirely accurate. Weight gain of about 30 pounds in the last 6 months due to first edema and then actual weight gain, almost certainly from beta blockers.

[autumn bloom]

Hi. I have beed officially diagnosed with POTS for three years--Vasovagel Syncope since my teens. My weight has always been very low and easy to manage. I am often nauseated and eat/drink to settle my stomach. However, since I began all the POTS meds, I have gained almost 20 pounds---I thought the weight gain was the inactivity. I drink a lot---mostly sugary drinks as too much water makes me sick. I joined Weight Watchers a year ago (even though I am not over weight according to their guidelines) and they feel it is menopause or a "plateau." Whatever you want to call the weight gain, it only came along with the POTS and the medications.