Water Deprivation Test Results

[shoe]

So I had my follow up with the endocrinologist today. He started up with, "I have an answer!" and I said, "Give me more of the DDAVP, NOW! NOW!" and he said, "Ah, it helped?"

I have to say, I think this is the first time ever I've gone into a doctor's office, on the second visit, and the answer the doctor gives isn't "You need to see a psychiatrist."

I have diabetes insipidus, neurologic origin. I'm not quite grasping the difference between partial and complete, save the severity/length of time. He's sure it's not complete, but it's very clearly DI, and the response to the DDAVP injection was enough to show that it was central, and responsive to the stuff. I guess my plasma osmolality wasn't horrible horrible (as in, indicated partial over complete, but definitely abnormal) and my urine before the injection was 247 mOsm/kg. Afterwards, it was 370 mOsm/kg.

Starting me on DDAVP tonight. It'll just be nice not to be slave to the latrine and AquaFina, if you know what I mean. MRI is being scheduled currently. He is encouraging that we get a copy of it ourselves and bring it to a neurologist to look at as well.

Our toilet paper budget can now be used somewhere else!

[sue1234]

Oh, how nice to have some affirmation! Please keep us posted on how it works and how you feel in the next few weeks as your body adjusts to having more fluid.

[Sophia3]

YAY! never had all that testing but DDAVP helps me too, less bathroom stops and less chapstick...less thirst (but I sill have dry mouth issues)

Anyway, SO good to see good news shared.

[firewatcher]

Hooray!!! Answers are wonderful things!

Just BE CAREFUL! You will have to change your lifestyle somewhat when you get on it full time: cut back on the pure water and up the gatorade, don't drink unless you are physically thirsty and have regular electrolyte checks (blood-work) for the first few weeks until you know how much dDAVP you'll need for control. Be super careful if you sweat a lot or are in the heat.

GET the MRI, you don't just "get" DI, but don't worry; the pituitary is much easier to take care of than POTS! Another possibility is that you don't have POTS at all, but an underlying pituitary issue! That would be cool, because it could be FIXED!!!!

I am so glad you got the test!

Bravissimo!

Jennifer

[janiedelite]

Yay! I'm so glad you might start feeling a little better and get some quality of life back.

[shoe]

Ah, yes, got the careful with the fluid talk... It's something I'm so paranoid about anyway (water intoxication -- my dad works with people who have had traumatic brain injuries, and I've seen/heard of what the clients he works with have gone through with that). That paranoia was one of the reasons I was trying SO hard not to drink so much even after I was going so much... because I knew it wasn't right, but I actually felt a lot better when I did... But since my "thirst" sensor seems to be busted a bit (just like my "full bladder" sensor is off) I know it'll be tough, and I know I'm more likely to screw up on the side of dehydration.

Yes, totally getting the MRI. Between the CDI and the facial palsy, I'm glad that we're getting one done that is looking especially hard at the problem area (where I guess they don't always look). I am sure I've had some kind of dysautonomia forever (or at least since my early teens) -- but something in the past few years has made it a lot worse and a lot more variable on a cyclical basis -- and I don't think at all that it's merely some change in the way the dysautonomia is affecting me. The sooner we can get that figured out, the better off I am -- no matter what it is, y'know? At least if I know, I have a shot at dealing with it.

Just looking forward to having maybe a few hours at a stretch with out needing to run to the bathroom!

[potsgirl]

Congratulations! You've uncovered one of the aspects of your illness. That's a huge hurdle in itself. Good luck with your new meds and water intake...And buy something cool for yourself with all those saved TP $$.

Cheers,

Jana

[snakeshoes]

Congratulations! You've uncovered one of the aspects of your illness. That's a huge hurdle in itself. Good luck with your new meds and water intake...And buy something cool for yourself with all those saved TP $$.

Cheers,

Jana

Don't worry there. If it means I'm making less than daily trips to the grocery store for cases of water and Gatoraid, I'll be buying her something nice with the savings too.

The doctor was great today, but I think we confused him a little. Clearly, he thought he was delivering bad news and wasn't prepared for us to be so happy to hear it. Finally hearing "the test was clinically significant" will do that to you though.

[erik]

Hypopituitarisms are said to come in all shapes & sizes. One can have partial or full deficiency of one or many of the master hormones (or one can have little tumors that produce too much but that's something else). Also, the hypothalmus ties in and other regions (where the "sensing" seems to be done) can have major or minor trouble... which is like having a broken thermostat (or thirstostat . Or the stuff that receives those signals and "figures out" how to respond can be goofed... a more "central" problem and less "glandular".

There are some "flavors" of panhypopituitarism that present symptoms totally identical to POTS. Depending on what they find, you might eventually be leaving our "club" technically, even if you have identical symptom cluster. Subtle pituitary probs are cyclicial/episodic... particularly "stress dependent"... like secondary addisons and whatnot.

Once one pituitary problem is identified I sure hope they give you "the works"... there are 7+ master hormones and related "sensors" and each can be goofed mildly. Some tests even look normal, but then a doc can look extra closely or in a different way and see a "mis-timed" response to some provocative tests, ACTH stimulation and whatnot.

On the "fascinating" side... vasopressin (antidiuretic hormone) also influences memory formation! So strange that the water retention hormone ties in with that. Some people experimentally used it as a "study aid". Just a weird tidbit.

Anyway, best of luck to you and your "subfornical organ"! I always thought that was a funny and misleading name!

[juliegee]

Hallelujah!!!! I'm so happy you have an answer, Shoe. Now, I will cross my fingers & toes that it's something fixable & benign that's causing the DI. WE'd love to lose a member

I think I may have been the one to suggest DI....I had recently seen a Mystery Diagnosis Show. Your symptoms fit that patient's almost exactly. Once she was appropriately treated; she literally had her life back. I pray you will too.

Everyone's comments get me thinking. I do have an enlarged pituitary....Can it be causing my symptoms???? Time for more research.

Congrats on the validation. Pretty rare here.Keep us posted on what you find out.

Julie

[erik]

I do have an enlarged pituitary....Can it be causing my symptoms???? Time for more research.

Studies like this implicate the region directly in "pressor" response... which many of us lack (therefore having POTS symptoms):

http://ajpheart.physiology.org/cgi/content...act/276/5/H1409

Of course those with known peripheral denervation have a reason already and on needn't hunt down other causes... but it's just another link in the chain that can break. That area of the brain can be damaged by physical injury, toxin, (perhaps infection), etc. Damage may or may not be visible as lesions... and lesions don't necessarily mean malfunction so nothing is ever that definitive, but it's fascinating to ponder. For those of us with known damage to the area (or events like head injury that greatly increase the odds of this)... it seems worth investigating to me. Not sure if docs will buy it... I'm still slow and cautious with what I press doctors in hunting down for me.