WATER DEPRIVATION TEST, for PARTIAL DIABETES INSIPIDUS?

[Sing]

Question for those of you with symptoms of central diabetes insipidus--i.e., excessive urination and thirst

I have read from time to time (maybe in Dr. Byron Hyde?) that a common symptom is what appears to be central diabetes insipidus,
in which the pituitary gland is not regulating the body's water levels properly. I have read that our version is not the true (regular)
kind of diabetes insipidus. Yet this seems to be one symptom of the dysregulation of the HPA axis.

The endocrinology dept wants to run a water deprivation test on me, as so far they have found both a yes and a no answer to the question about my diagnosis.
The water deprivation test is the big one, I gather. It sounds awfully unpleasant--going in in the morning and spending all day with nothing to drink or eat.

Does anyone have any experience or advice to give me? I don't have to go through this test but could decline it. They are leaving this up to me, though they think it will be useful
to show whatever is going on.

Cheers,

Sing

 

[Ocean]

Question for those of you with symptoms of central diabetes insipidus--i.e., excessive urination and thirst

I have read from time to time (maybe in Dr. Byron Hyde?) that a common symptom is what appears to be central diabetes insipidus,
in which the pituitary gland is not regulating the body's water levels properly. I have read that our version is not the true (regular)
kind of diabetes insipidus. Yet this seems to be one symptom of the dysregulation of the HPA axis.

The endocrinology dept wants to run a water deprivation test on me, as so far they have found both a yes and a no answer to the question about my diagnosis.
The water deprivation test is the big one, I gather. It sounds awfully unpleasant--going in in the morning and spending all day with nothing to drink or eat.

Does anyone have any experience or advice to give me? I don't have to go through this test but could decline it. They are leaving this up to me, though they think it will be useful
to show whatever is going on.

Cheers,

Sing

I did one where I didn't eat or drink for 16 hours then gave a urine sample. Is the test you're doing different? I didn't have to go in all day, just to deliver the urine sample only. I was nervous about the 16 hours but it wasn't as bad as I expected, especially since I slept for part of it. I have to repeat this test and am not looking forward to it though, as I tend to drink a lot normally and get very thirsty so it hard to not drink. I think it won't be so bad and you'll be glad to have your results in the end. Good luck if you do it.

 

[SaraM]

I guess I will have to do this test soon, because I have the symptoms. What will they do after testing when they find we have this disorder? Ocean, did you get any medication for this?

 

[Ocean]

I guess I will have to do this test soon, because I have the symptoms. What will they do after testing when they find we have this disorder? Ocean, did you get any medication for this?

Sara, my doctor wants me to repeat this test, so so far we haven't discussed treatment. If I find out more I'll post on the forum.

ETA: Just to clarify, I don't think I had the test mentioned above. Mine was something I just did in preparation for a urine sample, not a test where I spent all day in a lab or clinic.

 

[richvank]

Hi, Sing.

If you have a very high daily urine volume, the water deprivation test can be kind of brutal, because you get very hypovolemic. The average normal 24-hour urine volume is 1.5 liters. I have encountered cases of ME/CFS in which it is several liters per day. The important thing with this test is that the person running it needs to understand that it doesn't have to be run for a fixed, predetermined time, but can be stopped when the blood and urine osmolalities have given the needed information or, at the most, the person has lost 3% of their body weight, or the person is in distress. If the person running the test can do the osmolality analyses in real time and knows what they are doing, it should not be too bad.

The diabetes insipidus in ME/CFS is usually found to be central diabetes insipidus, due to low secretion of antidiuretic hormone (vasopressin). According to my hypothesis, this is due to glutathione depletion in the hypothalamus and pituitary. Some people have been helped by taking desmopressin, which is a synthetic form of vasopressin, available orally or as a nose spray. However, the sodium level in the blood can go off-normal on this treatment, and needs to be monitored.

Best regards,

Rich

 

[CBS]

Hi, Sing.

If you have a very high daily urine volume, the water deprivation test can be kind of brutal, because you get very hypovolemic. The average normal 24-hour urine volume is 1.5 liters. I have encountered cases of ME/CFS in which it is several liters per day. The important thing with this test is that the person running it needs to understand that it doesn't have to be run for a fixed, predetermined time, but can be stopped when the blood and urine osmolalities have given the needed information or, at the most, the person has lost 3% of their body weight, or the person is in distress. If the person running the test can do the osmolality analyses in real time and knows what they are doing, it should not be too bad.

The diabetes insipidus in ME/CFS is usually found to be central diabetes insipidus, due to low secretion of antidiuretic hormone (vasopressin). According to my hypothesis, this is due to glutathione depletion in the hypothalamus and pituitary. Some people have been helped by taking desmopressin, which is a synthetic form of vasopressin, available orally or as a nose spray. However, the sodium level in the blood can go off-normal on this treatment, and needs to be monitored.

Best regards,

Rich

Hi Rich,

Very good points (as usual). As someone who was losing 7 liters of fluid a day and who at the time endured two poorly executed water deprivation tests, I can attest to the importance of sensitive real time blood and urine osmolalities and testing by someone who knows what they are doing. Desmopressin literally saved my life. As for sodium levels, I eventually was seen by a pituitary specialist who, for the first several months, kept very close watch on my sodium levels after prescribing the desmopressin. If you are prescribed desmopressin, it is not a bad idea to allow yourself to 'wash out' occasionally just to make sure that you aren't over treating the DI. Also, keep a close watch on your ankles for unusual swelling as this is a quick way to assess possible hypervolemia. Too much desmopressin can lead to retaining too much fluid which in turn can lead to hydrochephlus, a very serious complication with the real risk of death.

A couple years ago there was a great web-page run by the Diabetes Insipidus Foundation, (I think the URL was www.diabetesinsipidus.org) which has since been removed from the web. The site contained a wealth of information, much of which was provided by Dr. Gary Robertson. Dr. Robertson, who has now retired, was considered the leading expert on all types of DI in the US. Before the site was removed, I downloaded "Protocol: Water Deprivation Test" written by Dr. Robertson. It contains a great deal of detail, including clear instructions on testing protocol and a page of "Potential Problems and Pitfalls." Anyone who wants a copy can PM me with an e-mail address where I can send the document. I'd post the document in the PR library if I knew how to do so (anyone care to lend a hand?).

 

[Sing]

Thanks, Team!

More later,

Sing

 

[Sing]

I haven't posted for a while because it is taking some time to get the test approved and lined up. It is scheduled for the 18th, so I will let you know about it afterwards.

Thanks, Shane, for all your detailed information. I gathered that vasopressin not only helps with water retention but can help the endocrine system function better in other ways too. So, if they think I need it
I will try again, only this time not the pills which were too nauseating, on my last swing through this territory.

Sing

 

[Sing]

I had the Water Deprivation test nearly two weeks ago, but only got the copy of my results today, which I had requested. They did not find "true" diabetes inspidus (which I didn't expect them to, but the doctor thought they ought to check it out). All they could say about it, that I understood anyway, was they I drink too much water, therefore pee too much. I was able to concentrate urine enough--hardly flying colors but enough--to pass out of the criteria for D.I. Yes, I pass a gallon and a half of liquid a day, but that doesn't prove D.I. They barely noted my hypotension--could barely stand up and walk across the hall to the bathroom--and pulse in the 40's, which the nurse dealing with the test all day noted, or the way my blood didn't clot.The doctor whipped in twice just checking numbers fast with the nurse then leaving behind one or two statements in the air. We never even had a conversation. I couldn't take in, much less process with him, whatever he said in quick passing, I had so much brain fog. The poor nurse had a major struggle all day long with the hospital's new computer system. That seems to be a constant these days.

I feel as if some specialists are only interested in establishing whether or not one fits into their categories of illness. Barring that, the idea appears like a bright solution in their minds that there is nothing wrong. The implication is that I am making this up, doing it to myself, or whatever I do have which is abnormal doesn't matter. Hence, it was implied, the whole thing was a waste of their time (not my money). They even recommended I go off the cortisol (which makes the difference between having a small life and a very small life) which they didn't even test. Tossing a small grenade after my retreating back. That is the last time I will check into THAT dept.!

It is really touch and go with me about whether I ought to even try to deal with doctors who know nothing about ME/CFS and are determined to continue being ignorant. What else can I conclude about them? These "state-of-the-art" hospitals are surely the worst. I do my best communicating, preparing long in advance, studying, reviewing, having lists and articles. All to nought. This only proves to doctors that I am highly functioning and have nothing wrong. However, believe it or not, I am not completely upset by all this. I am INURED to this. You see, using a word like inured just proves that there is nothing wrong with my brain. All this appears to be the norm--that is why I am not appalled. However, if specialists such as them actually tried to help, I would probably completely unravel in gratitude.

 

[CBS]

Hi Sing,

I saw your post on the water deprivation test and wanted to say that I wish you had come away feeling as though you had been treated with more respect.

I too have to say that I'm not entirely surprised by the results of the test and at the same time, I would not consider the results definitive in the exclusion of mild/episodic DI. Two months before having a dramatically positive water deprivation test, I had a negative test where I too concentrated normally (my DI began in 2004 but was intermittent/mild for nearly five years before becoming so severe that it was clearly life threatening - that gradual progression made diagnosis difficult and now my endocrinologist repeatedly apologizes for not having treated my case with more urgency when things started to get worse). In the early stages, DI can come and go. In patients where this intermittent pattern is the case, the real challenge is what to do about treatment.

Desmopressin is a very powerful med and within the last 18 months there was a shortage because manufacturers stpped production in the face of lawsuits filed by parents who's children had been harmed by their over use of the med (it can be prescribed for enuresis - bed wetting - in children but too much can lead to brain damage or death) assuming that if some was good, more was better.

One though on your comment: you said that your HR was in the 40s. If you're in a dehydrated state due to fluid loss, it is more common to have a low BP (not enough fluid in the tank to keep the pressure up) and a high HR (the body is trying hard to push an inadequate blood supply around a system that is short a liter or two). IMO, none of this means that DI couldn't be playing a role at times. I know for myself, trying to untangle the cardiac issues has been nearly impossible (for me and my cardiologist - who actually was the first to suggest DI and who takes my concerns very seriously - in his words, cardiac issues in ME patients do not conform to any of the presumed knowledge taught by medical schools or written about in the literature).

But getting back to the issue of treatment; I've made this comment before but a neurologist I was seeing once stated that would often ask medical student what the first line of treatment was for DI. They would always respond "desmopressin" and he would correct them stating that the first line of treatment was always fluids. I know very few doctors that would prescribe desmopressin for mild/intermittent DI and I've talked with several ME specialists who are open to the presence of DI in ME patients but to a person, none of them would prescribe desmopressin for intermittent/mild DI.

The real challenge is to get yourself taken seriously when DI becomes severe after previous rounds of testing that came back negative. I hope for you that that never happens. But if it does, you'll definitely know it.

Take good care.

Warmly,

Shane

 

[Sing]

Thank you for your support, Shane, and for sharing your experience and knowledge so far. It sounds as though you have a few doctors who are willing to go around the corner with you, at least, to be open to the unknown or unusual, or what might be in earlier stages of expressing its dangerous features. I have had my sympom of excessive thirst and urination since the late 90's. It came on suddenly and was certainly not something I just did to myself. It has looked as though it has been part of the step-wise descent into a more of the symptom picture of ME. I don't think I need Vasopressin now, however, and am relieved that they don't either. I just wish that because I did not fit their typical patient picture or fulfill all their criteria for D.I., that they hadn't seem to conclude: Therefore there couldn't be anything physically wrong. "There is nothing wrong with you", I was told. I am glad I had something of a hide, which has developed from other experiences like this, but I may well go back and talk to the doctor who did my workup and called me about their conclusions, to clarify some points. It is hard to contest things as I have the low status of a patient vs the high status and standing of a medical dept., as well as a very slow brain and female conditioning in subordination, but it is better to be assertive and work toward more accurate communication, even if after the fact.

I always enjoy seeing your icon, by the way, as it is both a reassuring figure from the past, the heroic cowboy, and similar to how I used to envision my future as a child--namely, as riding off alone into the sunset. I never knew what "career" that was suggesting, but I knew it would be different!

Thanks again,

Sing

 

[Valentijn]

If I do have diabetes insipidus it's only when I'm crashing. Usually I drink a normal amount and pee pretty normal. But during a crash that can change dramatically for a few days. I don't think episodic diabetes insipidus like we get is even known to exist by the medical community. There's transient diabetes insipidus, but that seems to be longer lasting (such as during pregnancy).

I'm also not sure that our long term OI problems are related to episodic diabetes insipidus. Though it's impossible to tell, since it's never been investigated. I suppose the only solution is to never crash - if only it were that easy, especially when you need to go to doctor appointments!

 

[CBS]

Thank you for your support, Shane, and for sharing your experience and knowledge so far. It sounds as though you have a few doctors who are willing to go around the corner with you, at least, to be open to the unknown or unusual, or what might be in earlier stages of expressing its dangerous features.

...

I always enjoy seeing your icon, by the way, as it is both a reassuring figure from the past, the heroic cowboy, and similar to how I used to envision my future as a child--namely, as riding off alone into the sunset. I never knew what "career" that was suggesting, but I knew it would be different!

Thanks again,

Sing

Sing,

I do have a few doctors that are supportive but to be frank, in some cases only after nearly killing me with their presumptions and prejudices. I'm glad you enjoy my icon. Yours always brings to mind the inner strength we all must call on so often.

Valentijn,

You indicated that your fluid loss issues seem to be exacerbated during periods when you're crashing. Some endocrinologists recommend that DI patients come off of their desmopressin and "wash out" every few months to ensure that they still need it and that they are not over treating their DI and thus putting themselves at risk of hydrocephalus. There is something about a crash (or period of increased activity) that seems to increase the rate at which I metabolize desmopressin. The result is that I often "washout" during these periods. It's not a big deal because I can increase my fluid intake and if it is severe, I'll take a bit more "desmo." The bottom line is that my experience is consistent with the notion that periods of physical stress or crashing seem related to an exacerbation of my DI.

Good luck.

Shane

 

[richvank]

Hi, CBS.

"The bottom line is that my experience is consistent with the notion that periods of physical stress or crashing seem related to an exacerbation of my DI."

Thanks for posting this. I just want to note that this is consistent with my hypothesis that crashes occur when glutathione drops, and that also lowers the ability of the hypothalamus/pituitary to secrete antidiuretic hormone.

Best regards,

Rich