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Weight Loss ... Weight Gain


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When I slid into my most recent POTS crash last spring, it began with a rapid loss in weight over a very short period of time. My memory was it was 15+ pounds in 2-3 weeks. There was nothing I could do at the time. No matter what I ate, the weight just kept slipping away. I know that sounds like a dream for some people, but I also realize that many of you know how hard it is to function with the resulting low blood volume.

For months I tried to boost up my calories -- whole milk, real butter, lots of salt, 6 mini meals a day (I was also hypoglycemic at the time so eating frequently was a must.) But NOTHING I did put on even an ounce. In fact I continued to lose a pound or two every month.

Then all of a sudden something just changed in my system. I noticed the POTS was still horrendous, but some of the other symptoms (frequency of the surges, nausea etc.) seemed to wane slightly. And without changing my diet in the least, the pounds started to come back slowly (maybe a pound a week.)

Now of course, I am approaching a weight that I think would be NICE to stay at for a while ... but again, even if I decrease the calories (cut out the real butter!) the weight continues to creep up.

I've noticed this pattern over the years. I'm not a yo-yo dieter by any means. I eat a whole grain, whole foods vegetarian diet and have for a dozen or more years. But sometimes it seems my body gets this "set point" in its head and seems to adjust my metabolism according to that target. Then it may stay at that weight for a number of years. Until the next spin-dry cycle and it all goes to POTS!

Anyone else experience weight loss or gain that seems inconsistent with intake or activity?

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I can lose 6 pounds in a day. For me it is volume related. I think whatever is controlling the plasma volume is suddenly deciding to kick into gear and allows us to retain more fluid and then it gives up and out it pours.

You could also be going through thyroid surges, that would cause a more gradual yo-yo of mass as well as volume. Again, for some reason, it goes into gear and does what it is supposed to and then goes on strike again.

Just my theory.

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Hello EarthMother,

i experience exactly the same thing you do. It's been happening to me 4 times in the past 8 years. Everytime i get a big POTS flare up (like in 2004 and 2007) i loose wait big time. then after a few years or month i gain wait aigain (like now). This is really strange because i changed my eating happits a few years ago and stick to them no matter what. In fact i almost eat the same things every day! always the same amount of friuts, carbs and so on. It's very important for me to stick to this routine because i also get problems with my blood sugar at times and need to keep my blood sugar stable. I also eat tiny little meals (only a few bites a time) in during the day. So i dont understand either why i loose so much weight and then gain weight again even though i never changed my eating happits.

All the best


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Yes, this is my experience too. When my POTS is bad, I am constantly hungry and eating enough for 2 people but still lose a lot of weight. I can't really claim to have such a good diet; I eat the healthy stuff but also lots of fat and sugar. Having been undiagnosed for so long, I spent many years being very thin and overeating and now struggle to find the willpower to cut back to a normal amount of food.

When the POTS symptoms improve, the weight gradually creeps back. It never used to make any sense to me, but I now realise my weight depends on how well I can control the tachycardia (and to a lesser extent the resulting GI symptoms). I suppose this is why exercise, when I can manage it, has such a dramatic effect on my weight because it's so hard to exercise without setting off the tachycardia.

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I have the same problem with weight. My weight fluctuates by about 15-20 pounds. I can lose up to 5 lbs in a week, and then the weight loss slows down. The total gain or loss usually takes a couple of months for me. I have 3 sizes of clothes in my closet. I wish I could have a much simpler wardrobe, but I have to keep that many sizes on hand as my weight fluctuates so unpredictably.

When I'm losing weight there doesn't seem to be anything I can do to stop it. I can eat 4,000 calories a day and still lose weight. When I'm gaining weight, I can't stop that either. I can eat healthy food and stop eating when I'm satisfied, yet still gain weight.

For me there doesn't seem to be a difference between gaining/losing weight and a big dysautonomia crash. I'm sure that my up and down weight is somehow connected to the dysautonomia; it just doens't seem to be connected to my crashes.

Tests and lab work all come out the same no matter what my weight is doing.

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In the beginning when I crashed hard with POTs my weight dropped 25 pounds in 4-5 weeks. I couldn't eat, as my adrenaline surges killed my appetite. My abdomin was in pain a lot also, so the combination made it nearly impossible to eat. I picked at food when I was able, but it was not enough to keep my weight up. I started out on the high side of normal with my weight to begin with, so my weight didn't fall to a unhealthy level. I was a size 10, and dropped to a 6. I think anything below this would not have been healthy, as my bone structure is med to large.

After I saw Dr. Grubb in June 2001 I was put on wellbutrin, and slowly gained weight over the course of a year. I was stunned that I gained all my weight back-----plus 10-15 pounds more! I know the Wellbutrin caused the extra weight gain. Dr. Grubb thought it would cause weight loss, but if you read different reports, it can cause weight loss, and weight GAIN.....

Before I crashed, most of my life I was really thin----in fact I weighed less then I did after the 25 pound weight loss. I weighed about 122 pounds after I lost weight with the pots crash, but before that in the 80s and 90s my weight averaged 118 pounds, sometimes as low as 113. I felt decent back then, but did have issues with tachycardia spells and adreanline rushes. However, not really any other symptoms other then one bout of CFS like symptoms for around 3 months in late summer of 1990.

I eat less then I did back then now, and in fact I can't eat much at all in one sitting because my diverticuli in duodeum is so bad lately that tiny meals fill me up miserably. the best chance at eating a normal sized meal is in the morning. But here I am at the same weight. Don't tell me the tiny amounts of chocolate I eat cause my weight to stay up, and keep me at a size 12------lol. No one will take my chocolate away from me. I never eat a lot, and have not had a whole candy bar in many years. there are times at family gatherings, or other functions that I will eat more sweets then I need, but this is still a lot less then when I was thinner.

I think POTS can mess with hormones, and cause weight gain also, and it can also cause weight loss.

Bloat is another problem, and I hate it. I don't think this will ever go away, as I have had this for years due to my intestinal issues. Size twelves are a bit loose on me, but wearing a 10 does not allow bloat room---- :)

My goal is to get into swimming/aqua therapy, and keep it up regularly after that, and hope it helps. I DID exercise a lot more when I was thinner, and I'm not doing much now, as my body can't handle gravity. I'm as active as I can be, and walk when I can in the mall, but I don't make it much past a half mile or so. Everything is such a struggle.

Holding on to this weight only adds to the problems we can get with that old saying, "but you look so good" , syndrome. How can I be this sick when I "look so good"?

Believe me, it's possible!

I think people who are slightly overweight/overweight who have dysautonomia have a really tough time getting decent medical care at times because of shallow doctors who judge a person by thier appearance. They need to EXAMINE them, and actually TALK with them, treating them as a human being who derserves the same respect as any other sick person who walks into their examining room.

Maxine :0)

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I've freaked my docs out before by losing 20 lbs in 2 weeks---I'm sure that's common for a lot of you unfortunately! I hate it. It doesn't seem like I even lose weight either---at least in shape. My skin just feels looser. Gross.

In the past 4 years I've ranged from 115 to 150 lbs up and down. Hopefully my stretchmarks will eventually look pretty ;p

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