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I dont weigh myself very often but over the last 2 years (since I got POTs) I have prob put on about 14 pounds!My specialist says he believes its something to do with water retention!
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| Posts: 106 | Location: UK | Registered: May 09, 2008 |   |
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YES! I gained an unexplainable 2o lbs in 2 weeks. I used to eat ben and jerry's every night to stay around 100. 20 % of my body weight and no doctors do anyrhing, I am losing my looks, and my best feature, my brain...all I had left. My self esteem is, for once, just pathetic. I DO have the Vit D deficiency, super severe. Apparently, it can cause obesity. Get ur D tested. It causes similar problems to POTS.. Lack of vit D is a very big problem now and for ur future. snd it causes depression and weakend cognitive functioning. I also have related high PTH.
Anyway, can anyone tell us what to do about the weight. I am STARVING. Pots costs a fortune. I just want something tangible of myself back. Anyone REALLY know how to treat this? Does mega doses of vit D bring down the weight. I feel I am having triplets.any advice. Please help.
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| Posts: 1003 | Location: Midwest | Registered: December 06, 2006 |   |
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The weight gain nightmare most definitely happens to me. The worst occasion I remember is 18 pounds in a day. I wish I were kidding. I also wish I knew the answers. I had a doctor tell me it was a mild form of Cushing's, and prescribe diuretics. That was before the dys dx. Since then I've been afraid to take it, as it's contraindicated with the constant need to put in water.
I can tell you that the weight is clearly swelling on me. Sometimes, it looks like my hands and feet are latex gloves that someone tied off and blew up like balloons. I also get water retention around my middle. It looks awful.
I take thyroid meds, I test low routinely anyway. No one seems to know how to balance that. I'm also always frozen and fatigued when I'm swollen.
Pleeeeeeeeeeeeease if you find some answers, let us all know.
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| Posts: 116 | Location: cincinnati | Registered: August 16, 2007 |   |
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I did feel better when I was heavier. I definitely didn't have as much fatigue and brain fog. I had different stuff though: I didn't faint much, but I had a constant migraine for a year and a half.
I always sort of laugh to myself when people go on and on about how good I look and ask what diet I was on. The weight disappeared about a year ago now. I have no clue why it came or why it went.
Ultimately, I put on about 70 pounds in the course of about 2 months, carried it around for about 3 years, then it just started going away one day. It was gone in about 4 months. I didn't change my diet or exercise habits either time.
I can't control it, so I guess I try not to think too much about whether I was better off the other way, especially as it was such an emotional strain, the way people treat you when they don't like how you look. It's especially difficult as a fitness professional.
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| Posts: 116 | Location: cincinnati | Registered: August 16, 2007 |   |
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I've been battling the same weight issue. Three years ago, I was 116 lbs. and fought to keep that on. Now I'm at 148 and barely eating anything. Even though I have POTS, my PCP will occasionally put me on Lasix and it helps. When I'm bloated from fluid, it causes tachycardia. The Lasix has actually helped keep my blood pressure down and the tachycardia under control. I've taken 50,000 units of Vit. D twice and it had no affect on my weight. I start Human Growth Hormone injections next week. I think that the dysautonomia has our hormone levels so screwed up that our bodies don't know what to do. No one would believe these weight fluctuations but they're very real. I'm on cortef to help with adrenals but it made my estrogen level drop too low which probably contributes to weight gain. My human growth hormone is too low and doesn't respond properly to low glucose levels. I'm sure that contributes as well to the weight gain. My estradiol level surged to 501 one week and within two weeks dropped to 76. These types of fluctuations are going to affect our metabolisms greatly. When my estradiol levels were fluctuating, my pant size went from 10 to a 14 within that two week period. I avoid my bathroom scale as much as possible.
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| Posts: 181 | Location: Maryland | Registered: October 11, 2007 |   |
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Wow wow wow, Deb, it sounds like you've been in a very similar place.
What type of doc do you see who's had the forsight to look at estradiol and HGH? My vitamin D levels have never even been checked, to my knowledge. Who'd you find that was even interested in this kind of stuff?
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| Posts: 116 | Location: cincinnati | Registered: August 16, 2007 |   |
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An endocrinologist. If you're not eating and you're gaining weight - it's gotta be either metabolic or hormonal. It was happening too quickly so I asked my boss who happens to be a doctor in my plan if I could check my TSH three times in a week which no one does. It's normal for fluctuations in your hormone levels but not like what I saw. He agreed to check them for me and I was indeed going from hyperthyroid to hypothyroid within days. The docs had never seen such fluctations so they agreed to recheck (only because I had the levels right in front of them). Again they saw the fluctuations. I then asked my boss to check other hormone levels, i.e. estradiol, FSH,LH, etc. All of them were all over the place (extreme highs and lows within a very short period of time). That's why a lot of us are feeling so poorly and our metabolisms are screwed up.
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| Posts: 181 | Location: Maryland | Registered: October 11, 2007 |   |
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check my FOR QUESTIONS IN RE post. it offers a connection. hope it helps.
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| Posts: 68 | Location: Groton, CT | Registered: March 14, 2008 |   |
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Bubbleboy,
I couldn't find the post you mention through the search mode. Would you know what time frame it was posted in?
Thanks, Yogaluver
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| Posts: 116 | Location: cincinnati | Registered: August 16, 2007 |   |
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| Posts: 113 | Location: Wisconsin | Registered: February 27, 2007 |   |
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