Parages Posted May 7, 2015 Report Share Posted May 7, 2015 Just curious if anyone else has experienced weight loss. I was diagnosed in January and since then I've lost close to 20 pounds without making any major diet changes. My hunch is that some it may be loss of muscle mass since I haven't been nearly as active as I used to be but it still seems a bit extreme. I've mentioned it to the doctors I've been seeing and so far they haven't seemed overly concerned or ordered any tests related to that. Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 7, 2015 Report Share Posted May 7, 2015 Yes, I have experienced weight loss and it has been more of a problem since my symptoms became obvious. I struggle to keep weight on and am currently trying to keep to 95 lbs, even though I would much prefer to have at least 10 more lbs on me. I only occasionally have some gastropariesis symptoms so I don't understand what the problem is, either, unless for me it is autoimmune. I drink weight-gain drinks or drinks with protein at work and this helps with hydration and keeping those calories up. I look for the ones that are not too high in sugar, though, because I don't want to give myself other problems while I'm solving this one. That helps some. I am not losing weight anymore since I started that. Good luck. Quote Link to comment Share on other sites More sharing options...
ks42 Posted May 9, 2015 Report Share Posted May 9, 2015 When my POTS first started, I lost 30 pounds in a month on my normal diet. I know that wasn't just loss of muscle mass due to inactivity, because when I first got POTS I had been working out a lot (as usual), and was in great shape. The weight loss really scared my family. Over about a year, I managed to put about 15 of those pounds back on, but it took the whole year and I was on a massively high calorie diet (including weight gain shakes). I'm still struggling with keeping the weight on. This past week, I just lost another 5 pounds. And the thing is, I don't have GI problems, and we've ruled out gastroparesis (which is the usual cause of weight loss in POTS patients, I'm told).Originally, my doctors thought I had cancer, hyperthyroidism, autoimmune disease, or intestinal parasites (very good things to rule out if you're having that much weight loss) but I don't. I have had amazingly extensive workups, and we haven't found any reason for the weight loss.My current POTS specialist just informed me at my last visit that the continued weight loss issue "really isn't a typical POTS symptom if you don't have gastroparesis" and said I need to continue a thorough workup with my primary care provider to find the cause, although I can't imagine what more we could possibly test for at this point! Quote Link to comment Share on other sites More sharing options...
Parages Posted May 9, 2015 Author Report Share Posted May 9, 2015 I've had a lot of different tests done over the past few months, I haven't been told of any indication of cancer, thyroid problems etc. I have heard about gastroparesis but I'm not having any issues of nausea or vomiting. I have seen a gastro specialist and he told me that he thought i had GERD but that was it. Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 9, 2015 Report Share Posted May 9, 2015 I was very thin prior to diagnosis. I really couldn't keep weight on no matter how much I ate.Going gluten free resolved the problem for me as well as treating my pots symptoms. For me weightloss was absolutely a symptom. I would assume that excessive adrenaline would be quite a boost to the metabolism. Now I'm normal weight. Quote Link to comment Share on other sites More sharing options...
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