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Weight Gain or Loss?


Mrs. Glass
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Good morning,

I was just wondering if anyone else had problems with weight problems as I do?

Before all of these medical problems I would have to diet like crazy and walk at least 2 miles a day just to lose 2-3 pounds a month. Now I dont do anything and lose at least a pound every 2-3 days. It is not continual. When I first got sick I didnt lose any weight then all of a sudden I started dropping the weight. Then it would stop. I would not lose any more weight for a while. Now I am starting to drop the weight again. I know that I need to lose weight, but I am not doing anything to cause it. The Docs say that I need to be down to at least 150, because of the osteoporosis. I was just wondering if this has anything to do with POTS or not.

Hope everyone has a great day! B)

Vanessa (theycallmemrsglass) :)

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I have lost a tremendous amount of weight since developing POTS. I am now 15 pounds below my usual weight. For me, the weight loss was rapid -- over a period of 3 months or so -- then hit a plateau, but I cannot gain a pound of what I lost back. My metabolism, it seems, has been permanently screwed up. Of course, most of my friends say they wished they had my problem, but I also experienced muscle loss as well. So it hasn't been fun.

I think the weight loss goes with the POTS territory, but you could ask for a 24-hour catecholamines urine test to check for pheochromocytoma, or check your thyroid. Both of these can cause weight loss. You've likely already had a thyroid test.

Amy

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Hi Vanessa

I have always had a steady weight until I started taking sodium in June. I am not sure if it was due to the sodium or just a coincidence but I lost 2 stone in a month and looked awful. I eat everything in sight!! I spend all of my time baking cakes etc as i find it a great seated hobby, but then I eat everything that I make- and still loose weight!!

I have really concentrated on eating lots and have managed to gradually put the weight back on- but I need to eat 5 good meals per day and plenty of snacks!

Can't explain it but I shouldn't complain- I know a lot of potsies put weight on.

Hope it sorts itself out for you!

Katie

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I've lost ten pounds in three months with no effort. I seem to have an aversion to food- I just don't think about eating. I don't know if it is related to the dysautonomia or not. When I see my cardio in a few weeks he will most likely quesion th weight loss. Might need to have my thyroid checked as I have had an overactive thyroid in the past and that definiitely contributes to weight loss. So, I don't know if it necessarily goes with dysautonomia because I have not had this experience of rapid weight loss since being diagnosed until now.

Carmen

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I weighed about the same give or take a few pounds for years, until I got really sick. Then I dumped about 50 pounds. Now I hang around 110 or so, until my esophagus starts to shut then I lose, then after it's stretch, I'll put a few back on.

I'm glad I lost the weight, but not glad how it's happened!!!!morgan

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Wow- I can't account for weight loss- any chance it's due to stomach issues- like not being able to eat, nausea, or something like that?

Hmm I have put lots of weight ON since a year ago. About 10-15 pounds before that, and I believe a lot of it is also due to my birth control. (When I was younger and fully grown, before I lost weight, I was a C cup. Now I am DD.) Grr. I'm always hungry, and I can't exercise like I used to, so it's a vicious cycle. Luckily, I've been pretty steady since I was diagnosed- I'd gained most of it by Christmas and maybe a bit more until February or so. I lost maybe 5 pounds total this summer.. and I've probably gained them back since being here in England... It's kind of a roller-coaster!

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Hi.. My weight is like a yoyo.. in 2002 when i got diagnosed I was on some meds (florinef i think) and I gained like 25 pounds in short order.. but then lost it w/o any effort really... and I maintained my weight.. then this past spring and summer my pots got/ and is very bad and I have gained like 36 pounds... but now.. I am to he point were I cannnot really eat.. as I throw it up, or get diarrhea. or food and liguids cause sever tummy pain.. and the nausea.. is awful!!..

But in the course of 5 days maybe I have lost like almost 6 pounds.. and am curious to see tomorrow how much more I have lost.. due to this potsy/gi crap...

Sorry I am not much help here.. thought I'd share...

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I'm underweight. I have a terrible aversion to food after months of being sick. I actually get nauscious (sp?) around most foods. I don't ever get hungry: if it weren't for my family constantly telling me to eat, I don't think I would.

I've managed to keep from getting too underweight by drinking ensure. I hate them-- they taste like chocolate chalk, but I know I'd get very sick without them.

I don't know why I'm this way. I was a very healthy weight before I got sick, and pretty much from they day I became symptomatic, I lost interest in food. Mostly I miss loving food. I used to LOVE to eat certain foods: pizza, sushi, greek lamb (yummy)... but now I dread eating. I'd love to enjoy eating again but I don't know if that will ever happen.

I bet there's a connection between dysautonomia and food aversion. I know of too many people who've lost interest in food after getting sick (my POTS doc says food aversion is not uncommon in his POTS cases).

I wish there were a pill that could make us hungry, and not sick after we eat!

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Morning to All,

Thanks for all of the good responses. They have answered a lot of questions. I always fought my weight, ever since my first child was born. No matter what I did I could not lose weight. Now I do not even have to try and it just seems to come off. Yes, I do have an aversion to food, but then there have been months even after I got sick that I did not lose one pound, even with eating like a bird. Food always causes my stomach to hurt, and I too if it wasnt for my family probably would not eat anything. My docs dont seem to notice that I am losing weight like crazy, but I am also losing muscle mass. Right now they keep telling me that I have to be no more than 150 lbs. I have tried to tell them that this is not normal for me, but they do not think anything is wrong, so what can a person do. In October of 2004 when I had the car accident I weighed 240(I think) and I did not lose any weight until about March, then I was losing 10-15 pounds a month, and then nothing, now I am losing apprx. 1 lb. every other day. I have been eating (only because my family forces me) but I am still losing it. I now weigh 172. I had put on a little weight when I started the florinef, but now that I am off of it, it is coming down again. I dont mind the weight loss, but the muscle loss does bother me. Thanks again for all of the input from everyone. Have a great day.

Vanessa (theycallmemrsglass) :)

Wow- I can't account for weight loss- any chance it's due to stomach issues- like not being able to eat, nausea, or something like that?

Hmm I have put lots of weight ON since a year ago. About 10-15 pounds before that, and I believe a lot of it is also due to my birth control. (When I was younger and fully grown, before I lost weight, I was a C cup. Now I am DD.) Grr. I'm always hungry, and I can't exercise like I used to, so it's a vicious cycle. Luckily, I've been pretty steady since I was diagnosed- I'd gained most of it by Christmas and maybe a bit more until February or so. I lost maybe 5 pounds total this summer.. and I've probably gained them back since being here in England... It's kind of a roller-coaster!

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With all the meds that I am on I have lost 21 pounds since the 1st of the year. I have not changed anything i fact I am more now then every really not doing anything as when I get home from work I am so tired, that I just crash. But I keep losing the wieght. I have not worried about it too much as it has been over about 9 months. Is it normal to lose weight in the meds? Well hoe you all have a great night! Take care!

Amy

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For years I maintained my wieght about 118 to 122 I am 5'1". Then I quit smoking when I was diagnosed weith moderate Emhysema. Then I gained 10 lbs by just quitting smoking.

I had been trying to watch waht I eat I like being small and muscular. I do no tlike being over weight or to skinny. How ever then last Decemebr I started getting this GI stuff and was diagnosed with gastro paresis. My low weight I got down to was 97lbs and very malnourished. I felt like I was going to die.

To those of you who have food aversion and hate it. I WISH I did. My problem that I am strugggling with is even though I can not keep food down and I am SO SO naseated all the time. I still have a strong appetite and want to eat. This has been a HUGE emotional struggle for me. How do you just quit eating? I feel like I am going crazy with it. I wish I had no appetite than it would not bother me.

Corina (hopeful-girl)

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yes corina i can totally relate, i want to eat so bad! i am so fed up with being hungry all the time! but coz of the tachy and stronger painful beats, can only eat very very little, i know its miserable seeing all the commercials and not being able to eat anything you want,

radha

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i have had lots of ups & downs weight wise over the years of autonomic craziness, most dramatically this past year...losing 35 pounds pretty quickly & then gaining most of it back almost just as quickly. for me it's always related to GI issues &/or meds...

it is frustrating though...i get equally frustrated by the rapid changes in either direction...i was keeping all of my clothes in the dryer last spring b/c they were falling off & now they're super snug. gggggggrrrrrrrrrr

:P melissa

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I was thin and underweight all of my life until I was put on Florinef years back. At that point I gained about 40 pounds in a year and then maintained that weight. Once I was off the Florinef I dropped about 20 pounds quickly and have fluctuated up and down give or take 15 pounds.

I find my metabolism doesn't want to work well but I also have Hashimotos Thyroid which may explain part of the problem.

Have you been tested for thyroid issues. (Sorry if you already answered this...I'm having trouble keeping up)

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yes, my thyroid has been tested, numerous times always comes back ok. what scares me is I am losing muscle mass also. Vanessa

I was thin and underweight all of my life until I was put on Florinef years back. At that point I gained about 40 pounds in a year and then maintained that weight. Once I was off the Florinef I dropped about 20 pounds quickly and have fluctuated up and down give or take 15 pounds.

I find my metabolism doesn't want to work well but I also have Hashimotos Thyroid which may explain part of the problem.

Have you been tested for thyroid issues. (Sorry if you already answered this...I'm having trouble keeping up)

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i lost a lot of weight when i first got pots - it just dropped off and was mostly muscle mass like when you have an overactive thyroid - so thats what they thought was my problem originally withthe hand tremors as well.

i lost over 18kg in two months or something.

Ive managed to put weight on - with the odd healthy dosage of guiness when i can handle it.

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