Pituitary Tumor Removed/ caused centeral Inspidus Diabetes

[mamasue487]

Has anyone had a pituitary tumor removed and due to the surgery ended up with centeral inspidus diabetes?
Any if so, are you taking DDAVP to regulate it?  And if you are taking DDAVP are you having any side effects
from it?  Thanks Susan

[horselip]

I wanted to let you know that there are other people with DI so we are not alone. One of the things that has helped me to cope is to find the humor in this bizarre condition! I met several other DIers, when I was first diagnosed and it was comforting to know that I was not alone. Now, I'm pretty used to it and don't really even think about it.

There are situations that DIers find ourselves in esp when the DDAVP runs out. Since our consumption of fluids and need to pee is quite beyond the norm there are weird and funny things connect us.

The grocery cart is often  75% fluids-
I use a LOT of ice-
When I go out to a restaurant I ask for a pitcher of water. Sometimes the server won't do it, but then once I've asked for the fifth of sixth refill they bring over the pitcher-
I plan errands around where I can find bathrooms and know every bathroom in our little community-
When I visit me parents, who live in another state, my dad always makes sure that he has cases of sparkling water for me. He sets up a cooler for me to use for when we drive around! It is very cute. Ditto with many other friends and family-

So I guess that I am a spoiled and very thirsty DIer

Horselip

[laydekaw]

Hello,

I had the same pituitary surgery horselip had in April and was put on the desmopressin right away. I also have Adrenal Deficiency which is why the hydrocortizone.

Did you check on the Desmopressin? Maybe it will be better for you.

[mamasue487]

Good Morning,

I have asked if there is anything besides the DDAVP, and have been told there is not.  How did you end up being DI?  You and horselip are the only two people I have ever talked to that had this.  

[laydekaw]

I too have DI but i take desmopressin and hydrocortizone daily. I found if I break the 20mg desmopressin into quarters I do better. The 5mg just didn't seem to work for me. I take it morning and night and other than a 10lb weight gain I have not had any side affects. If I don't take enough I feel fatigued and if I take to much my weight goes up but when the dose was decreased the bulk of the weight came off.

Have you tried other medications?

[mamasue487]

I had my surgery in Aug 2001, and for the first year or so the DDAVP was good, then slowly it began to change.  I started with the nazal spray however, that was like sucking gasoline up my nose, then I switched to the pill form.  I have asked if it is possible to have this healed, and they tell me no, however, I pray that it will cease.  Anyway I hope to talk again with you, it is just wonderful to finally speak to someone who id DI, I just can't tell you.  Thanks again

[horselip]

I got DI after pituitary surgery to remove a Rathke's Cleft cyst in January 2006. The cyst was pressing on my pituitary stalk and the surgeon had to remove some of my gland. So I no longer make any of the pituitary hormones.

Good that the blood pressure is under control now. So you cannot take a nighttime dose of DDAVP?

Yes, that's why I don't take DDAVP during the day as I get fluid overloaded, if I do. Sometimes I even take a night off if I feel puffy or am holding onto fluid.

How long ago was your surgery? My DI is not as severe as it was a few years ago when I had to take a higher dose of DDAVP and I had to take it in the daytime too.

[mamasue487]

Hi, glad to meet someone that I cancommunicate with about this subject.  I was also on .01.mg and taking scrappings of the pill.  I literally would use a knife and scrap off a little bit if powder.  However, it just wrecked havoc with me.  And I know what you mean about still being thirsty after taking the DDAVP.  Thats where you can really get into trouble with water overload and it hurts to move.  But, I am no longer having high blood pressure issues, or rapid heart beat, or palpatations and my head doesn't hurt.  Yes I am very busy going, and get up at night but I am no longer worried about causing a heart attack with the DDAVP.  I am checked every three months with blood work, twice a year with a MRI and once a year with a visual scan.

So how did you end up with DI?

[horselip]

Hi again-
When you have DI, it means that you don’t make enough Anti-diuretic hormone (ADH) also known as Vasopressin. In a healthy person this is a hormone that is made by the posterior part of the pituitary gland. Like you, I stopped making enough ADH because of pituitary surgery. Without enough ADH, you pee and pee and pee. You can’t help it. If your thirst mechanism works right, you are also really thirsty in a way that only another DIer can understand. This is so that you replace what you are peeing out.

And yes, if I could drink ice, I would. I also like bubbly things like sparking water. I can down a liter in one big gulp. It truly is like a demon like you say  It has nothing to do with room temperature. It is a hormone deficiency.

You poor thing. It sounds to me like you never found the right dose or timing of how to take the DDAVP.  But for sure you were holding onto too much fluids. Of course this would increase your blood pressure and cause the water weight gain. That is dangerous and could cause your electrolytes to get too low. But DDAVP is truly a miracle for those of us who have DI. Seriously I would be so sleep deprived, if I could not take it at night that I would go nuts. You might rethink this and try the DDAVP again for your own sanity. I would rec that you proceed cautiously and work closely with your doctor and try the smallest possible dose that you can, only at night to start and take it from there.

What dose were you on?

The smallest dose that is available are 0.1 mg tablets. I take ¼ of one pill about an hour before I go to bed.  My neuroendo has nicknamed me “super-splice” because if this. The DDAVP lasts until about 8 am the next morning. Then the water works begin and I become the human pee machine again. For me, this is what works best. The little bit of DDAVP that I take at night is enough that I do not pee every half hour and am not thirsty through the night and I can SLEEP. But, by day I prefer to guzzle and pee. I tend to get fluid overloaded when on DDAVP during the day, as I still want to drink fluids but the DDAVP makes me stop peeing so the fluids build up. But sometimes I do have to take DDAVP in the day because I am in a situation where I cannot drink a liter and pee every 30-60 minutes.

There is another hormone called aldosterone that is made by the adrenal glands. If you are low it can cause similar symptoms to DI. I wonder if your doctor has ruled this out?

Horselip

[mamasue487]

Hi, thank you for getting back to me.  I stopped taking the DDAVP about 10 months ago, because I felt that if I didn't I was going to end up with a heart attack.  For the past four years I kept telling the endo that I was having times of rapid heart beats, and that I could hear my heart pumping in my head, and that I immediately blew up, and wasn't able to get the water out.  Then last January I knew I had to get off of it because the blood pressure went up 185/120 and I felt horrible.  Its been a bit hard especially when I am under emotional stress, fighting an illness, over tired or apprenhensive.  Then its like a demon is inside and I drink and drink.  I also have to drink really cold water or ice tea.  Room temperature does nothing to quiet the thirst.  So in January my MD put me on a water pill and that helped a little, the cardologist said I needed BP meds, and so for six months I was put on one and then another with all kinds of varying effects.  Finally a month ago I took myself off all and I am running between 125/70 to 135/80.  I am afraid that I am hurting the kidneys with the water pill and I am going to try and give the body a time to adjust.  I get worse with the bloating as the day continues. The endo finally said last week that I am the first person he has treated that has such adverse reactions.  However, I did the research it is not that rare.  I can drink 1 gallon to 3 gallons depending on my surroundings.  I stopped charting, as I was charting the BP, the amount of food I was eating and symptoms.  The endo has said for the past three years he thinks I need gastric bi pass as I am considered obese.  I know that, I have gained 50 pounds in the past four years.  When I stopped the DDAVP, I dropped 15 in 10 days.  When I went on the water pill I dropped 10 in seven days.  But that came back again when I stopped the water pill.  It was a double edge sword, it made me feel thirsty because I was going so much.  I can loose or gain up to 7 pounds in 24 hours and it is really hard on the self esteem button.  How did you end up with this?  Did you have a removal of a pituitary tumor?  I tell you, this is a hard condition to live with every day.  But I am now wondering if the thryoid might have something to do with my blood work numbers, and if the symptoms I have been complaining about for the past four years might be due to a malfunction from thryoid.  I look forward to hearing bak from you, its just so wonderful to talk to people who are in the same situation.  

[horselip]

Hi I have diabetes insipidus too. Mine is partial so it ebbs and flows a bit and I do have to adjust my DDAVP dose sometimes. Without DDAVP my fluid consumption is 4 or more gallons a day. At first, I kept a fluid intake and output diary. Also I weighed myself every morning to see if I was taking to much medication and/or not consuming the right amount of fluids.

And yes, for me the best approach has ended up to take DDAVP just at night so that I can sleep without having to get up every 1/2 hour to drink and pee. Then by day I drink and pee as much as i need to. If I will be in a situation where bathrooms or fluid intake is a prob then i take a small dose in the day as well.

It is truly a bizarre condition! At first I think that many people tend to overdo it on the DDAVP and get themselves overhydrated, which can be dangerous. But then not taking in enough fluids is not good either.

So how about you? What form of DDAVP are you on? What is your average intake/output without meds? Any specific questions?

Horselip

[rumpled]

I hope someone responds - I came close to having to take this on a temporary basis after surgery and know some people that take this.

Are you doing the spray or pills or both?