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Has POTS affected your weight?


Has POTS affected your weight?   

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Many of us seem to experience either weight gain ( often from inability to exercise ) or weight loss ( from constant overstimulation etc ) from POTS. What is your experience?

In my case I have weight gain when in the fatigue/low exercise tolerance/low metabolism phase and weight loss when in the overstimulation/high adrenaline/restlessness phase. 

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I have lost around 35lbs from the weight I was 15 years ago when my POTS became severe.  I didn't lose it all at once but when I'm in a flare I just seem to burn through calories.  Despite eating the same amount as usual I can easily lose 2lb a week and I find it so much harder to put weight on than it is to lose it.  I now weigh 140lbs which I think is OK for my height (I'm 5 foot 10).  

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I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞

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It’s amazing how no one seems alarmed about my weight loss, either. I am quite light for my height and was never overweight. I supplement calories like crazy and still don’t gain... I have no GI issues but also lost my appetite permanently about 18 months ago. I force a lot of meals anyway!

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