Mrs. Glass Posted November 10, 2005 Report Share Posted November 10, 2005 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! Vanessa (theycallmemrsglass) Quote Link to comment Share on other sites More sharing options...
calypso Posted November 10, 2005 Report Share Posted November 10, 2005 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 Quote Link to comment Share on other sites More sharing options...
Ianankatie Posted November 10, 2005 Report Share Posted November 10, 2005 Hi VanessaI 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 Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 10, 2005 Report Share Posted November 10, 2005 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 Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 10, 2005 Report Share Posted November 10, 2005 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 Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 10, 2005 Report Share Posted November 10, 2005 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! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted November 10, 2005 Report Share Posted November 10, 2005 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... Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted November 10, 2005 Report Share Posted November 10, 2005 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! Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 11, 2005 Author Report Share Posted November 11, 2005 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!<{POST_SNAPBACK}> Quote Link to comment Share on other sites More sharing options...
AJVDK Posted November 12, 2005 Report Share Posted November 12, 2005 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 Quote Link to comment Share on other sites More sharing options...
hopeful-girl Posted November 12, 2005 Report Share Posted November 12, 2005 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) Quote Link to comment Share on other sites More sharing options...
Radha Posted November 13, 2005 Report Share Posted November 13, 2005 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 Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 14, 2005 Report Share Posted November 14, 2005 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 melissa Quote Link to comment Share on other sites More sharing options...
Poohbear Posted November 14, 2005 Report Share Posted November 14, 2005 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) Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 14, 2005 Author Report Share Posted November 14, 2005 yes, my thyroid has been tested, numerous times always comes back ok. what scares me is I am losing muscle mass also. VanessaI 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) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 15, 2005 Report Share Posted November 15, 2005 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. Quote Link to comment Share on other sites More sharing options...
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