The Guinea Pig Squeaks

[shoe]

I was slightly afraid that I was headed thisaway. My doctor (who is a fellow and still getting her flight feathers) has seemed to be, um... stalling. The doctor who first diagnosed me is teaching this year, so no office hours, and he said to go with this young doctor (same clinic) and he'd be on tap if needed. And I was having that uneasy feeling that I'd eventually get the statement I got last week: "There's not a lot more we can do here, you just need to see specialists."

Of course, I know that as well, but the problem is I'm sure (and the doctor who diagnosed the autonomic issues) that there are other issues either co-existing or aggravating the autonomic stuff. And when I go to specialists with nothing truly resolved, and a whole host of bizarre cross-system symptoms, it looks crazy and specialists just shut off (and I sorta can't blame them.)

So I know that I'm a rough case, and I know that she's young enough she probably went from high school to college to med school and when you're fresh out of school and go really from student to professional and are dealing with people's lives, it's probably sorta a rough thing to step into. I completely understand. But I've been through the maze of hot potato specialists who have no idea what the other stuff is and that can make their own areas harder. I don't mind someone learning the ropes being here... but I don't need to travel that particular road that I've done so often again. I'm not sure she's aware that she's flailing, but I needed to call for reinforcements.

So the diagnosing doctor was paged, and we talked. Logically, he pointed out I can't get a good result for a lot of things, but the peeing/drinking cycle had to be normalized. I asked young doctor about diabetes insipidus, was told it wasn't possible, no need for a water deprivation test. She did refer me to an endocrinologist.

Diagnosing doctor thought that perhaps my faulty autonomic system gradually kept setting the hydration bar higher. It happened fast, and I'm not sure, but the logic seemed worth trying to try to hold back a small amount daily to see if we could set that bar lower. I asked if I should still see the endocrinologist the next morning. He said yes.

Heh. I saw the endocrinologist yesterday morning. I go in, and by the time I saw him, I'd not had a drink for 45 min. He asks what's going on. I didn't mention the drinking/peeing. He did. Ahem. He said (cough), "I am certain you have diabetes insipidus. Your urine tests have a very low osmolality and the plasma (I didn't think I had that done, hmmm) is technically within normal range, but if you were merely drinking a lot it would not be as concentrated as it is. Let me see your tongue."

I guess I was showing signs of drying out in the 45 min period I was there. God knows I felt it. We asked (my husband was with me) about what the other doc said, and endocrinologist said for now, just do what I have to to feel as normal as I can. He is giving me a water deprivation test on Monday. He told me to try to drink nothing after midnight Sunday, come in first thing and they'll do what they have to first thing with tests/DDAVP injection, and follow up labs. He said if I can't do it, he'll admit me to the hospital to get er done... But might as well try it at home (he acknowledged just sometimes doesn't work out that way and that's fine.)

I guess I feel like, y'know, it's possible that there's some variety of DI going on, and hey, maybe my autonomic system hydration bar setting is playing a part in that as well. Or maybe it is purely one or the other (my feeling is some sort of DI, though. My urine concentration was off, I just found out, a few weeks before I started to feel ALWAYS dehydrated.) I guess I'll see... I mean, this is really such a little part of feeling so cruddy, but it's also really a nuisance.

So that's underway, and my diagnosing doctor is going to throw my new doctor some pearls of wisdom to try to help her out. I tried to reiterate to him that my husband and I aren't really mad at her, we empathize, but we also have to minimize the freakin' huge impact this has on our lives and it's in our court to point out she's lost and needs to get help and take a new approach even if she's not quite made that realization herself.

I suuure hope I can do this at home, though. I'm pretty sure my husband'll be lugging me into the hospital on Monday morning in a wheel barrow...

shoe

[sue1234]

". Your urine tests have a very low osmolality and the plasma (I didn't think I had that done, hmmm) is technically within normal range, but if you were merely drinking a lot it would not be as concentrated as it is. Let me see your tongue."

I have a question. What exactly did he mean when he said, "merely drinking alot it would not be as concentrated as it is."

I'm trying to understand this concept, as I drink/pee alot, and my ADH is low. So, is he saying that with DI you have concentrated urine? I don't know why I was thinking it was the opposite, but I really want to learn and understand this. Thanks!

[firewatcher]

Here's the rundown on Diabetes Insipidus:

Neurogenic/cranial=low ADH levels (possible pituitary damage) ***responds to dDAVP***

Nephrogenic/renal= too much ADH since the kidneys do not respond to dDAVP

To correctly dx diabetes insipidus you have to have a water deprivation test. It is the only test so far. If your Serum Osmolality (blood thickness) is high (above 295) while your Urine Osmolality is low (below 300) at the same time, then you probably have DI. During the Water deprivation test, if you have DI, you will be unable to concentrate your urine above your serum osm. The problem comes in when the DI is partial. If you have complete DI you will be urinating somewhere around 10 liters a day and it will be very dilute. If you have partial, you could only be urinating 3-4 liters a day and you may be able to concentrate it above your serum osm. ADH is very tricky to measure and is often completely inaccurate. I display inappropriately low levels of ADH (if the tests are correct) and dilute urine with a high measured (not calculated!) serum osm. However, I can concentrate my urine in extreme situations (10 hours no liquid.) I was told that I do not have DI, but then I was also told that I do have DI from another endo. You don't just "get" DI, usually there is head trauma or a pituitary tumor or kidney damage. But....pituitary hypoperfusion has been shown to cause 30% of the "idiopathic" cases of DI.

I'll be happy to discuss it further, I know waaaaaay too much about it now!

[sue1234]

Firewatcher:

Thanks for your explanation!

Shoe:

I would still be interested in hearing all that your endo discussed with you, and would like to hear all aspects of the testing, etc. that he does with you. Thanks!

[juliegee]

Shoe,

I'm glad you're having the test done. I pray you get definitive results from it. I know how frightened you must be. I recently had a bad patch with low blood sugar and had to do a glucose fasting test- I was terrified. I know I can't breathe and pass out when my blood sugar is low. I hated having to do that in my endo's office. I brought a lifesaver with me and planned to pop it in my mouth if things got too bad. Made my endo crazy. He asked if I was eating candy during my test. I said "of course not, but I'm ready to- I'm not sure if I can trust you." You keep your water bottle clenched in your hand.

Dumb advice, but take it easy in the morning before you head over to the endo's. Knowing I had to fast in the AM, I showered the night before, threw on comfortable clothes, and tried to protect myself from undue stress. My hubby helped my son get ready for school & took him in, etc. I just focused on myself and staying calm and conscience. Bring a sweater, Those offices are always overly air conditioned & I couldn't stop shaking during my test. Also, bring a great book to keep your mind occupied.

Let us know what you find out. Drink your water before it gets too bad, You can always try this in the hospital. You'll be safer & will still get accurate results.

Hugs-

Julie

[Tachy Phlegming]

I'm new at this so your post was a bit upsetting.

Isn't there a point at which a well-tolerated treatment known to work in patients with dysautonomia is given without diagnostic tests -- to see if it works? Like the way they seem to give out beta blockers? These "conditions" which accompany dysautonomia seem not to be entities in their own right and if they are, then maybe the fact that they all occur together in dysautonomic patients means that they are a little different or arise for a slightly different reason in these patients than in others.

For that reason, I don't understand why they do the tests (unless you want them -- that wasn't clear from your post).

The list of medications on this site includes DDAVP. I thought I was going to ask for it on the theory that it is well tolerated -- without taking a test.

I have been given garbage medications for IBS which I didn't tolerate, antibiotics for my "subclinical" bacterial infection which wasn't an infection at all (it worked but one doctor didn't want to give me more because the third test didn't show an infection either ) ...

Tell me I'm not going to go through this.

At this point, I'm hardly interested in whether I have "diabetes insipidus" "intersitital cystitis" and myriad other "conditions" for which I can have tests. I see what medications work on the rest of you and I'd like my doctors to do their brilliant ex juvantibus explanations after I get the medications (the type they were planning to do after I got medications for the above conditions I didn't actually have).

They give the other medications probably on the basis that most patients actually respond to them and they are harmless. I am/(was) expecting that they will give me these different medications based on the fact that I am completely different from their other patients and patients in the class I am now in use these other medications.

Did you want the test? (And am I going to have to take a test to get to try this medication??)

[firewatcher]

I'm new at this so your post was a bit upsetting.

Isn't there a point at which a well-tolerated treatment known to work in patients with dysautonomia is given without diagnostic tests -- to see if it works? Like the way they seem to give out beta blockers? These "conditions" which accompany dysautonomia seem not to be entities in their own right and if they are, then maybe the fact that they all occur together in dysautonomic patients means that they are a little different or arise for a slightly different reason in these patients than in others.

For that reason, I don't understand why they do the tests (unless you want them -- that wasn't clear from your post).

The list of medications on this site includes DDAVP. I thought I was going to ask for it on the theory that it is well tolerated -- without taking a test.

I have been given garbage medications for IBS which I didn't tolerate, antibiotics for my "subclinical" bacterial infection which wasn't an infection at all (it worked but one doctor didn't want to give me more because the third test didn't show an infection either ) ...

Tell me I'm not going to go through this.

At this point, I'm hardly interested in whether I have "diabetes insipidus" "intersitital cystitis" and myriad other "conditions" for which I can have tests. I see what medications work on the rest of you and I'd like my doctors to do their brilliant ex juvantibus explanations after I get the medications (the type they were planning to do after I got medications for the above conditions I didn't actually have).

They give the other medications probably on the basis that most patients actually respond to them and they are harmless. I am/(was) expecting that they will give me these different medications based on the fact that I am completely different from their other patients and patients in the class I am now in use these other medications.

Did you want the test? (And am I going to have to take a test to get to try this medication??)

Well, none of these meds are harmless. DDAVP can cause serious electrolyte imbalances which can lead to anything between heart arrythmias to brain damage. NONE of the meds we are given are being used "on label," so it is all experimental for our set of symptoms. Since POTS is an unexplained constellation of symptoms that CAN have an underlying disorder, your body's response needs to be checked! You probably will encounter ignorant docs and you will "go through this" eventually. Sorry, but I'm not sure that there is anyone on this board who hasn't. As far as wanting the test: yes, I wanted it. You don't "just get" DI (like a cold) and if I had/have it I want to know why!

[Tachy Phlegming]

I am trying to see what my doctor might say to me, why I might have to go through waiting more time, and making myself sicker instead of just getting treatments. I am thinking my doctor may very well say what you are saying and I want to know a little more about the theory given some of my concerns below.

I am frustrated regarding my own situation right now (for some the below reasons) so forgive me for giving you a mildly hard time based on my experience and what I will need to be asking for myself.

---------

You wrote about electrolyte imbalances and arrythmias ...

When I went into the emergency room unable to breathe, eat, or drink and with hypokalemia, I was told to go home and eat a banana and drink some orange juice.

After that experience, I can't unlearn that emergency rooms aren't for electrolyte imbalances.

Recently, when I had hypokalemia and an abnormal EKG while preparing for a sigmoidoscopy, my doctor called and told me to go to the emergency room. I missed the call but when I got it days later, I thought they were joking.

I knew what the emergency room would have said anyway -- Eat a banana. I think... Am I wrong?

The only time I even started to wonder whether maybe my levels were off more than the times they happened to be picked up by the labs was when I started reading posts on this forum. But that would mean at a minimum that I should be monitored more regularly and I can't imagine even suggesting that to my doctor.

So I have had the electrolyte imbalances and probably heart arrythmias -- probably for long stretches on end. I always thought my brain was getting damaged when I was sick, but nobody mentioned it or cared.

If DDAVP does more of the same, I am not thinking it would be much different...

-------------

I have not been diagnosed for a lot of years. I now have tests I need to ask for but my doctor is going to want to stop me at some point and I want the ones I think I need more than this (where I don't know the results at all). The tests I have gotten so far are telling me exactly what I have known for years.

The same thing goes for this test. I think I should test positive for diabetes insipidus (sometimes -- like with everything else, I'm sure this would be variable depending on the day).

But I don't see how you get to the root of the problem with a test for diabetes insipidus -- which furthermore may not be conclusive and the results of which are going to depend on the doctor interpreting them. When you add to this that a lot of people with dysautonomia have diabetes insipidus (or something which manifests the same way) and the root cause of their dysautonomia is not known (I think), I am not sure what you are finding out. Can you tell me a little more? Are people going to be finding out about head trauma, pituitary tumors, or pituitary hypoperfusion?

I don't see in this case, why having a test which will make your health worse is better than seeing whether the medication works and reasoning backwards.

[firewatcher]

I am recalling some of my experiences with electrolyte imbalances and arrythmias ...

When I went into the emergency room unable to breathe, eat, or drink and with hypokalemia, I was told to go home and eat a banana and drink some orange juice. Gotta love 'em!

After that experience, I can't unlearn that emergency rooms aren't for electrolyte imbalances. Severe yes, chronic no.

A month ago, when I had hypokalemia and an abnormal EKG while preparing for a sigmoidoscopy, my doctor called and told me to go to the emergency room. I missed the call but when I got it days later, I thought they were joking.

I knew what the emergency room would have said anyway -- Eat a banana. I think... Am I wrong? Unfortunately, no.

The only time I even started to wonder whether maybe my levels were off more than the times they happened to be picked up by the labs was when I started reading posts on this forum. But that would mean at a minimum that I should be monitored more regularly and I can't imagine even suggesting that to my doctor. If your doc doesn't mention it to you, you need a new doc!

So I have had the electrolyte imbalances and probably heart arrythmias -- probably for long stretches on end. I always thought my brain was getting damaged when I was sick, but nobody mentioned it or cared.

If DDAVP does more of the same, I am not thinking it would be much different... dDAVP expands water only, so it makes it much easier for your electrolytes to go wonky. You won't be able to drink all that you want, but ONLY when you are truly thirsty. This can be hard to judge and the doctor can't help your thirst perception.

I am frustrated regarding my own situation right now (for the above and below reasons) so forgive me for giving you a mildly hard time based on my experience and what I will need to be asking for myself. This isn't a hard time! My docs are much worse!

I am just trying to see what my doctor might say to me, why I might have to go through waiting more time, and making myself sicker instead of just getting treatments. I am thinking my doctor may very well say what you are saying and I want to know a little more about the theory given some of my concerns below.

I have not been diagnosed for a lot of years. I now have tests I need to ask for but my doctor is going to want to stop me at some point and I want the ones I think I need more than this (where I don't know the results at all). The tests I have gotten so far are telling me exactly what I have known for years.

The same thing goes for this test. I think I should test positive for diabetes insipidus (sometimes -- like with everything else, I'm sure this would be variable depending on the day).

But I don't see how you get to the root of the problem with a test for diabetes insipidus -- which furthermore may not be conclusive and the results of which are going to depend on the doctor interpreting them. When you add to this that a lot of people with dysautonomia have diabetes insipidus (or something which manifests the same way) and the root cause of their dysautonomia is not known (I think), I am not sure what you are finding out. Can you tell me a little more? Are people going to be finding out about head trauma, pituitary tumors, or pituitary hypoperfusion?

Actually, I've been a real pest about this with Vanderbilt, and they state that there is no prevalence for DI in the dysautonomic population. POTS patients CAN concentrate their urine normally and do not have serum osmolality that is abnormal at any point. You can "wash out" your kidneys by over-drinking and it will look like you have DI, but with a formal test, your pituitary works just fine. However, here is the possible connection: cerebral/pituitary hypoperfusion is the cause in 30% of the unexplained, true diabetes insipidus cases. If we are lacking proper bloodflow to the brain when upright, then isn't that cerebral hypoperfusion? Could it be orthostatic DI? Just guessing.

I don't see in this case, why having a test which will make your health worse is better than seeing whether the medication works and reasoning backwards.

Again, it is looking for a cause versus just treating the symptoms. If there is something wrong with your pituitary, you really need to know!

[shoe]

Hi... It's a weird thing... My urine is really diluted (osmolality was like 144 mosm/kg -- think that's the unit) but my plasma/serum osmolality was 290 mosm/kg. So my urine was diluted, but my plasma, while in the normal range, was still more "dehydrated" looking than it would have been if it were all working okay and matching the diluteness of the urine. I can kinda see why the doctor I saw in the interim while transitioning to the new doc (another general practitioner) said that it's kind of a tricky formula to work out what it means... I think what was throwing my younger doctor was that the plasma wasn't off enough to be flagged but the urine was... (Not sure why the 9.5 liters of urine in 24 hours wasn't more of a concern, but hey...)

[firewatcher]

Hi... It's a weird thing... My urine is really diluted (osmolality was like 144 mosm/kg -- think that's the unit) but my plasma/serum osmolality was 290 mosm/kg. So my urine was diluted, but my plasma, while in the normal range, was still more "dehydrated" looking than it would have been if it were all working okay and matching the diluteness of the urine. I can kinda see why the doctor I saw in the interim while transitioning to the new doc (another general practitioner) said that it's kind of a tricky formula to work out what it means... I think what was throwing my younger doctor was that the plasma wasn't off enough to be flagged but the urine was... (Not sure why the 9.5 liters of urine in 24 hours wasn't more of a concern, but hey...)

How much are you drinking??!!!! Are you keeping up with the output, or are you drinking that much to begin with....it makes a HUGE difference? What happens if you limit yourself to 2.5 liters a day? IF you do a water deprivation test, DO NOT do the 12 hour test, start with the 4 hour or do an overnight in hospital test with a catheter.

[shoe]

The kicker is even if it's definitive it won't explain what's doing it... If it's neurogenic I'll need an MRI, and I'm not sure what they'll do if it's a kidney thing. It's just that they're treated very differently. (It's not related to either of the diabetes mellitus varieties... So alas, I am allowed no water as any would mess up the test results. I think I probably could eat, but I'm going to be evil, so I'm not going to bother.) The good part is that it's not really a particularly dangerous condition (as long as I don't dehydrate or if I need to take DDAVP I need to be careful to not drink too much, or risk water intoxication)... But I can swear on a stack of Bibles, phone books, or Superman comics it is the biggest nuisance. I'm having to drink 3 gallons (at least) of water to not feel like total crud daily, and my 24 hour urine was about that in terms of output. The problem is, if I don't drink, I still pee. And pee. And pee. And volumes of it. It just keeps coming. It stinks though cause I feel like I'm sloshing but I'm drying out at the same time.

So while it explains not much of anything, and it is sometimes apparently idiopathic, there's not a whole lot to it itself -- it's a pain, and it's usually an indication that something else is going on.

[firewatcher]

The kicker is even if it's definitive it won't explain what's doing it... If it's neurogenic I'll need an MRI, and I'm not sure what they'll do if it's a kidney thing. It's just that they're treated very differently. (It's not related to either of the diabetes mellitus varieties... So alas, I am allowed no water as any would mess up the test results. I think I probably could eat, but I'm going to be evil, so I'm not going to bother.) The good part is that it's not really a particularly dangerous condition (as long as I don't dehydrate or if I need to take DDAVP I need to be careful to not drink too much, or risk water intoxication)... But I can swear on a stack of Bibles, phone books, or Superman comics it is the biggest nuisance. I'm having to drink 3 gallons (at least) of water to not feel like total crud daily, and my 24 hour urine was about that in terms of output. The problem is, if I don't drink, I still pee. And pee. And pee. And volumes of it. It just keeps coming. It stinks though cause I feel like I'm sloshing but I'm drying out at the same time.

So while it explains not much of anything, and it is sometimes apparently idiopathic, there's not a whole lot to it itself -- it's a pain, and it's usually an indication that something else is going on.

IF dDAVP works at concentrating your urine then it is NOT nephrogenic--no way! That was the first thing they tried with me. Honey, I hear the nuisance part, it is a royal pain in the toilet! You can't get anything done for peeing! Forget a trip to the grocery store, or a trip anywhere!

[shoe]

I wanted the test mostly because it's a pain. The GP said I didn't need it, DI isn't the issue. The endocrinologist says it is the issue, and it needs to be done to be treated correctly. I started having to get up 3-4 times a night to pee. Then I started to dehydrate (it took a few months.) I mean, I am drinking at least 3 gallons of water a day. And night. I am peeing every half hour, and according to the hat it's always 400ml and up. It is only painful or uncomfortable when I don't drink. Then I lose my vision, blah blah. And it's sudden. It can happen, depending on temperature and time of day and what I might be doing, in an hour or less. I can feel fine, mildly uncomfortable, and suddenly I'm having trouble seeing and walking straight. I can drink as much and I feel okay, but the problem is -- IT IS THE BIGGEST PAIN IN THE BUTT EVER. If I felt okay I couldn't go to museums, because of water restrictions. I need to have handy bathrooms... I really want it scaled down prior to the holidays. My parents are a three hour drive. I can't have my husband pull over that often for me to go, and I can't cart that much water in the car with dogs and luggage. And my parents can't come down, because I am up so much peeing at night, it disturbs their dog and she barks and keeps them up.

It's probably the least of my sick feeling health issues, and the one that's the biggest nuisance, because even when I feel like I could go out with my husband to the grocery store for milk (yeah, I have fun dates!) I'm kinda stuck thanks to the speed I dry out. It's like I hate bringing it up cause it's not painful, but it's a pain, and I know all too well doctors like to use existing symptoms and existing meds to blame other problems on anyway, so I kinda need it figured out. Unless it's acknowledged that it's there by the test, I'll be told to just "stop drinking so much" which, if it is either form, could be dangerous.

[shoe]

I am hoping it's nephrogenic, honestly. Because I know nothing I am on or have been on causes it, I know I don't have a genetic issue, and there's a set of systemic stuff that causes it that might help explain why everything got worse a few years back, and then worse nine months ago. I don't know if it'll work out that way, or if it'll be central and I will never know for sure.

The issues with this are two with me: It's an unbelievable handicap to either need to have a water bottle, or a toilet, or, no lie, both at once. If I have a bottle of water, get up, and spend twenty minutes loading the dishwasher or cleaning a countertop, I get tunnelvision, my veins pop up wildly, I turn bright red and have massive head pain, stitches... in 20 minutes of barely no activity. Sure, I keep drinking, I'm fine. It's a pain to deal with.

Then... the other deal is doctors like to say it's in your head, just stop drinking. Or some tests require that you not have fluids... but if I don't and something's wrong like that, it could go pear shaped really quick. Sure, I'm fine if I can drink, but what if I am in a situation where I can't and the people around me don't know/need proof... So I need to know for sure, at the very least, and because it is such a pain, it needs to be managed. I feel like there is so much about how I feel out of my control, if I can get some kind of measure of control over ANY aspect of it, it's something. Maybe it won't solve everything, but it's positive to at least feel like things are being addressed.

I guess, if my life from here is just a game of whack a mole symptom management, it'll stink, but it beats just sitting and not giving it a go. I think the only way I've made peace with any of the crud I've encountered is I know that even if the doctors aren't always giving it their all, I can. That's the one thing I can do. The data points of tests might not mean much, now or ever. But if I can take this one little annoyance down a notch, I'll do it.

I might learn something, I might not. It might just save some annoyance, and at this point in the deal, it's worth a lot. My butt has toilet seat imprints pressed on it.