lgtaylor100 Posted September 20, 2011 Report Share Posted September 20, 2011 Has anyone else lost significant amounts of weight (without trying) and then gained weight. I lost about 25 pounds when I first became ill from June to December of 2010. Then I gained back about five pounds and stabilized there for a while. Now I have gained back the entire 25 pounds and a few more. I am seeing an endocrinologist in a few weeks but I'm wondering if anyone else has experienced these weight swings from dysautonomia? This is very disconcerting. Along with all of the other problems, last fall my clothes were falling off of me. Now the same clothes are extremely tight. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 21, 2011 Report Share Posted September 21, 2011 I lost 20 pounds around the time i was first diagnosed 2 years ago and have not been able to gain it back. eating is difficult usually, and impossible when ill so from that loss of 20 i tend to fluctuate up and down about 5 pounds either way depending on how im feeling. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 21, 2011 Report Share Posted September 21, 2011 My weight fluctuates up and down 10-15 pounds on an ongoing basis but I can track it to the severity of my symptoms. If I am couch/bed bound a lot, I will gain because I am being sedentary UNLESS I am also going through the bad GI symptoms at the same time. Then I lose weight because I'm lucky to eat one meal a day successfully. I also gained weight when I started the Florinef from carrying the extra fluid. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted September 21, 2011 Report Share Posted September 21, 2011 My weight fluctuates by about 5 lbs on a daily basis. I had a bad flare up earlier this year where I lost 10 lbs and was down to 85 lbs. Since then, I have gained 15+ lbs and am up to 100 lbs give or take a few. Quote Link to comment Share on other sites More sharing options...
songcanary Posted September 21, 2011 Report Share Posted September 21, 2011 I lost 10 lbs rapidly without trying when I first got sick. After a year, I started gradually gaining it back, and now I have done that and then some. Plus, I just started Florinef and I am gaining a little from that as well. Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 21, 2011 Report Share Posted September 21, 2011 Igail- I sound exactly like you. Lost about 20 initially (without trying) and stayed there for about 18 months. Then in two weeks I gained 8. Stayed there for a few months, then gained 12 more in 1 month. Now I bounce up from there another 5-7 pounds. I can't seem to lose now no matter what I try. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted September 21, 2011 Author Report Share Posted September 21, 2011 Chaos - that is really weird that your pattern was so like mine.Has anyone addressed this issue with their doctors? Quote Link to comment Share on other sites More sharing options...
louloutinks Posted September 21, 2011 Report Share Posted September 21, 2011 I went from a UK size 8 to UK 14/16 in a short time, with no change of diet. The past nearly 2 months my weight has fallen off me for no reason and am a uk small 10/12 - I feel really thin now Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 22, 2011 Report Share Posted September 22, 2011 Has anyone addressed this issue with their doctors?I've tried with my PCP, endocrinologist, cardio and neuro. They all just look at me and say "you look fine". Makes me wonder why they all have a questionnaire that asks if you have had a greater than 10 lb wt. loss or gain in the past 6 months. But when you try to talk about it, they blow you off. Just one more thing they can ignore for us. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 22, 2011 Report Share Posted September 22, 2011 When I got sick, I actually gained quite a bit of weight, for the first time in my life. I went from 125ish, (I'm tall, about 5'8) the same as I have weighed since high school (and I am 36 now) and went up to 160 over the course of a couple years. I couldn't get anyone to understand that no matter what their charts said, my weight wasn't normal for me. Then, out of the blue, just this year, my weight plummeted. I was losing 3-5 pounds a week, scaring the crap out of my boyfriend, and my parents were utterly terrified. That got people's attention. I was also having a whole host of GI complaints by that time. In March I was finally dx'ed with Celiac Disease. I have had a **** of a time stabilizing my weight since. I gained some weight back, was up to 140, but I am apparently super sensitive, and the slightest cross-contamination can make me sick as a dog. Which is actually the reason I am awake right now! (Curse you Benihana!) So bottom line, I don't know how much of my weight issues are POTS, and how much are Celiac.Sandy Quote Link to comment Share on other sites More sharing options...
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