DI and weight

Diabetes Insipidus
#1

I wonder if anyone has experienced a weight gain with their DI. I was just diagnosed with Central DI in January. my symptoms started many years ago, but had no clue what it was. in the fall they became unbearable, and finally couldn’t live like that so sought help and got my diagnosis.

I had been putting weight on over the past year, and was attributing it to age, menopause, etc. I always watched what I ate and exercised, so I knew it wasn’t my change of diet.

now I am on DDAVP spray, and my weight is still inching up. not happy at all.

just thought I would see if anyone experienced anything similar.

#2

thanks for your response, but I don’t think that scenerio would be my answer.

I am drinking mostly water, maybe diet soda once in a while, so that couldn’t be it. my diet hasn’t changed, and I am still working out as much as before…

#3

When I first had DI, I was ALWAYS thirsty, and got sick of drinking water. So
then I started drinking ice cold slurpees, and juices, and those have LOADS
of calories. What are you drinking? That might be affecting it.

Best wishes,
Stephanie

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#4

Well, I guess you can rule out the juice angle! Another thing that caused me
to gain weight, in tandem with DI, was that they put me on hydrocortisone, as
my body was no longer making it, due to the damage to my pituitary during the
surgery to try to fix the DI symptoms.

When they put me on hydrocortisone (HC), I gained over 50 lbs. in a month!
When you take HC orally, vs. making it naturally, you have to take extra, to
absorb the right amount. So the synthetic version of it means you are " on
steroids" of sorts, and you grow.

So, that may have nothing to do with you, but it might be of interest to
others with this multi-deficiency issue going on. I’ve now been taking HC for 17
years, and my endo doc decided to do some testing to see if my production of HC
has re-started in my pituitary. So, they had me slowly reduce the HC, and
then one morning, before taking any, they did a blood baseline draw. Then, they
gave me a shot of HC or something, and then measured it again in 30 minutes. I
think that was the details…but in the end, they have found out they are
going to be able to slowly reduce my dosage until I am using none. (For folks on
steroids, it is never good to go cold turkey!)…

I am very excited, as a potential “side effect” is weight loss!

Best wishes to everyone,
Stephanie

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#5

hi Stephanie, that’s really something about the hc, congrats for being able to come off it. I never took it, so for me, that’s not it.

oh well…

#6

Water retention was what mine turned out to be. I gained 20lb in 3 months. Due to other complications found I was water intoxicated, went off DDAVP for awhile and lost the weight. Haven’t gained it back since I’ve been careful with how much water I drink. I don’t know if it is relevant to you, but it happened to me. Just another option.

#7

I replied in the other thread, but now saw this. I was wondering how often you take the DDAVP now. I do a spray every night before I go to bed, and it allows me to sleep thru the night, something I haven’t done in years.

if I have to cut down on the DDAVP in order to lose the water retention, I wonder what that would do to my sleep… boy, could this disease be any more annoying???

#8

Ya’ll are going to laugh at this idea i have.ok i went for years without taking my ddavp as i couldnt afford it.i would drink gallons of water a day,i would drink so much sometimes i would throw up.anyway i was never a big eater till i started drinking so much water my idea is with all the water i was drinking i was stretching my stomach and then it takes more to fill me up.does this make any sence???even on the ddavp sometimes i drink alot.just a thought i may just be nuts lol

#9

Darkangel, I think you are right! When you drink a lot, your stomach streches!

#10

I guess it could be possible but water is supposed to be a natural appetite surpressent. When I don’t take my ddavp I don’t have any appetite at all. It almost makes me nauseous to think of food when I haven’t taken it. Lately, because I have gained weight, I have only been taking it at night so I’m not as hungry during the day.

darkangel62 diabetes-insipidus-cpt8420@lists.careplace.com wrote:

#11

i agree on the appetite suppressant but think about it thats for normal people who dont drink gallons of water i can drink a gallon at one time.and that about every hour or so.

#12

This coversation makes me wonder if appetite & DI are yet another way in which we’re often so different from each other.

I’m with Becca - no treatment and I have absolutely zero appetite, my stomach (and appetite) seems to disappear from my body and the only thing I can tolerate is water.

When my DI was diagnosed at 14, after six months, I had lost so much weight that I spent a month in hosptial. Over the following years, whenever my weight crept up, I would just spend part of the day untreated and the weight would just fall off because I wasn’t eating anything.

I really does sound as though you have some sort of other problem. I’m assuming you’ve tried listing down everything you eat / drink for several days. I’ve read of people putting on weight because they drink soft drinks, but I think you confirmed you didn’t.

I appreciate exercise is difficult if you’re drinking that much.

Given you’re untreated, you mind find it useful to ask for info on the NDI site.
Most of them use a thiazide diuretic which actually reduces their urine output, and it’s not expensive here (Australia) but for all I know, the quantity you would need to take to make any difference may offset that.

Maureen.

darkangel62 diabetes-insipidus-cpt8420@lists.careplace.com wrote:

#13

I don’t have overweight and I have DI all my life. When I don’t take my minrintablets I almost eat as much as when I do. I am really surprised to hear so many of you have overweight.

#14

since I started this thread a few weeks ago, I came to figure out some things. first of all, it is water retention that I am experiencing. I am now trying to eat lower sodium foods where I can. it seems to be helping, the bloating in my fingers has gone down significantly, and I can move my rings around again. whenever I have a higher sodium day, I bloat up again.

I am on the spray and do one dose every night. it lets me sleep through the night and that’s all I really care about. if it wears off in the afternoon, that doesn’t bother me.

also, I never said I was overweight, I was concerned as I saw my weight starting to creep up over the past year, but I see it must water now so I am okay.

my doctor was no help in this, I asked him if following a lower sodium diet would hurt me at all. he basically didn’t give me an answer. told me to watch what I eat and work out, which I already do. it seemed a bit condescending to me. but where to go for other info? maybe one of you can offer advice on whether eating lower sodium is a problem.

#15

I also have no appetite when I’m off my spray. Water is king. When I am untreated I get sick if I eat. I let myself go untreated for 3 days because of hyponatremia and water intoxication and since then my digestive system has been completely shot. I’m back on my medicine, but things still aren’t right and I can’t eat anything of substance other than watery fruit! Funny thing is, even though I’m only drinking diet drinks and water in addition to not eating much fruit at all b/c I can’t afford it, I haven’t lost ANY weight! I haven’t been able to lose weight for awhile, no matter how much exercise, how healthy I eat, even writing everything down and making sure I have everything right. I may try to go untreated and drink water for a little while and see what happens. Who knows what happens when DI decides to rear its ugly head!

#16

Weight loss ie very necessary.

#17

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