Desmopressin (ADH) for polyuria (excessive urination)

[MeSci]

Trt seemed to help initially but over time it just stopped working and my testosterone returned to crap as did my trips to the toilet increased once again. If I can get my doc to treat me on this then maybe it can give me that last bit of pep I need? ?

What's Trt?

 

[MeSci]

Nine liters a day is still three times the accepted cut off for triggering additional testing (3000 mL).

I'm pasting here some info I put in another recent thread, which is especially important for small people like me (50kg) who could otherwise be overlooked for a diagnosis of DI:

I think it's more logical to use guidelines that take body mass into account, as normal blood volume is dependent on body mass, and the amount of blood filtered by the kidneys to produce urine depends on blood volume; therefore, all other things being equal, normal urine volume should be proportionate to body mass.

I made a note of two relevant resources some years back which I have cited as saying:

Depending on source, urine output should be no more than 40 ml/kg/day [1] or 50 ml/kg/day [2]

1.Ball, S. (2005) Diabetes insipidus, Medicine , vol. 33 , Issue 11 , pp.18-19, accessible online at <http://www.medicinejournal.co.uk/article/S1357-3039(06)00271-4/abstract>

2.Clinical Biochemistry, Metabolical and Clinical Aspects, edited by William J. Marshall, MA PhD MSc MBBS FRCP FRCPath and Stephen K. Bangert MA MSc MB BChir MRCPath, Churchill Livingstone, 1995, p.37, online version available at

<http://books.google.co.uk/books?id=...hl=en&sa=X&oi=book_result&resnum=2&ct=result>​

Unfortunately the Google books online version seems to have gone, but it may be accessible elsewhere, and the full text of the first article is not accessible without payment.

If you are only drinking to thirst, your serum electrolytes (primarily sodium) will be normal to slightly elevated as you would simply be replacing the fluid that was inappropriately lost.

It may depend on what you are drinking. If you are drinking plain water but losing electrolytes in urine, your electrolyte concentrations will obviously fall.

I wonder how easy it would be to find an endo who understands diabetes insipidus. I have not found a single doctor who does, including a top endo who appears in the media. My local pharmacist, who periodically invites prescription customers to have a quick review of their drugs, asked me whether I was taking desmopressin to build muscle! This is not a use of which I have ever heard, and I don't think it is used for this at all, as it does not appear to have muscle-building properties.

I am happy taking it according to info that I find at reputable internet sites such as the one I linked to above. I can check that at any time. I have had no problems doing things this way.

 

[Sidereal]

I've never found an endocrinologist who was willing to help me with this problem, though even if I did, I think I would be too afraid to take desmo. This drug is no joke; you can get water poisoning and die. Unlike some people on this thread with clear-cut DI, like many others with ME, my DI is intermittent and seems to coincide with episodes of crashing, PEM, monthly cycle or just a random flare in inflammation that I can't attribute to anything in particular. I will suddenly start dumping enormous amounts of urine and electrolytes (judging by the volume and colour I would say it's both water and solute diuresis) and develop muscle weakness and fasciculations (well, worse than usual!) which I am able to counter somewhat by drinking more + constant sodium and potassium supplementation. This erratic nature of the problem makes me think I would be unable to dose this drug safely.

This is probably my most frightening symptom.

I have found diphenhydramine (Benadryl, an OTC allergy med) very helpful for reducing urinary output in general, though I still get these breakthrough episodes. It makes sense that it would help given its anticholinergic properties. AFAIK, they use tricyclic antidepressants for nocturnal enuresis in kids, and those drugs have some overlap in the mechanism of action with sedating antihistamines. Without it I am bedridden with low blood volume. Standard OI/POTS advice to guzzle water and eat more sodium makes the problem a lot worse. I have discovered through trial and error to never drink plain water but instead drink a homemade electrolyte mix. Glucose also helps a lot.

@MeSci, I have the full text of the first reference you cited, as well as his two more recent reviews on DI in the same journal. Let me know in PM if you want them.

 

[MeSci]

If anyone wants to check on whether they might be losing a lot of electrolytes in urine, or just whether their urine is excessively dilute (indicating that they may need some desmo) or excessively concentrated (perhaps indicating that they have had too much desmo/should not take any at the moment) you can estimate your urine osmolality using a brewer's/winemaker's hydrometer (they don't cost much) and a thermometer, and doing some sums, then checking the results against normal ranges which you can find online.

I posted the calculation methods in my blogpost and am copying them below:

1. Measure specific gravity of sample.
2. Take temperature of sample.
3. If sample is above 15.6 degrees C, add 0.001 to specific gravity figure for each 3 degrees above 15.6 degrees C. (e.g. if sample is at 21.6 degrees C, add 0.002.) (Not sure what you do if it is below 15.6 degrees, but if you do measurements soon after urine is produced it shouldn't be!)
4. Multiply by 33194.
5. Subtract 33247.

That should give you the osmolality.

Osmotic particles that increase urine osmolality are commonly the ones in which ME and POTS sufferers are often deficient, notably sodium. I would not be at all surprised if magnesium deficiency were also largely due to urinary loss.

This page has some useful info on urine and serum osmolality, why they are tested and what the tests can tell you.

For normal ranges, labtestsonline are reluctant to specify, but Medline Plus say:

• Random specimen: 50 to 1200 milliosmoles per kilogram (mOsm/kg)
• 12 to 14 hour fluid restriction: Greater than 850 mOsm/kg

However, I would say that if you commonly get a result near the top or bottom of the 'random specimen' ranges that is abnormal. 50 means too dilute and 1200 means too concentrated.

Some sites have a much narrower normal range, e.g. here:

The normal 24-hour urine osmolality is, on average, 500-800 mOsm/kg of water. Random urine osmolality should average 300-900 mOsm/kg of water.

Without desmo, my urine osmolality was sometimes 100 or less, obviously indicating dehydration due to losing too much fluid in urine. My fluid intake was normal. Later, after I developed hyponatraemia, which doctors misdiagnosed in multiple ways, urine osmo and sodium were quite high compared with those of serum, strongly suggesting the reason for the hyponatraemia, but not proof, as the doc did not order the other tests needed to calculate fractional excretion of sodium (FENa).

 

[MeSci]

I've never found an endocrinologist who was willing to help me with this problem, though even if I did, I think I would be too afraid to take desmo. This drug is no joke; you can get water poisoning and die. Unlike some people on this thread with clear-cut DI, like many others with ME, my DI is intermittent and seems to coincide with episodes of crashing, PEM, monthly cycle or just a random flare in inflammation that I can't attribute to anything in particular. I will suddenly start dumping enormous amounts of urine and electrolytes (judging by the volume and colour I would say it's both water and solute diuresis) and develop muscle weakness and fasciculations (well, worse than usual!) which I am able to counter somewhat by drinking more + constant sodium and potassium supplementation. This erratic nature of the problem makes me think I would be unable to dose this drug safely.

This is probably my most frightening symptom.

I have found diphenhydramine (Benadryl, an OTC allergy med) very helpful for reducing urinary output in general, though I still get these breakthrough episodes. It makes sense that it would help given its anticholinergic properties. AFAIK, they use tricyclic antidepressants for nocturnal enuresis in kids, and those drugs have some overlap in the mechanism of action with sedating antihistamines. Without it I am bedridden with low blood volume. Standard OI/POTS advice to guzzle water and eat more sodium makes the problem a lot worse. I have discovered through trial and error to never drink plain water but instead drink a homemade electrolyte mix. Glucose also helps a lot.

@MeSci, I have the full text of the first reference you cited, as well as his two more recent reviews on DI in the same journal. Let me know in PM if you want them.

Thanks, @Sidereal but I think I have the full text although my version is a pdf with just 3 references, all by the same author (Ball). Is that what you have?

I understand your concerns and they are well-founded. My polyuria is also intermittent, but I only take desmo if I perceive the need. I seem to have two types of polyuria now, one being a central type which responds to desmo and one being a solute-driven one which also seems to drain me of electrolytes and leave me deficient.

I monitored my urine osmolality for a few months, and compared the results with my perceptions, so am now confident that I know when I need desmo, and in any case I never exceed more than about 300 mcg oral a day, and never drink more than about 2-2.5 litres of fluid a day. I have had no problems using self-monitoring.

No doctor has been able to give me a clear diagnosis, and they have all shown a woeful ignorance on the subject. If I had relied on doctors, I would still be living in a hell of insomnia, dehydration and virtual imprisonment by polyuria.

 

[Sidereal]

Thanks, @Sidereal but I think I have the full text although my version is a pdf with just 3 references, all by the same author (Ball). Is that what you have?

Yes, that's the one.

 

[Thinktank]

This topic went fast so i'll read the replies tonight.

The only docs i trust after visiting countless of so-called specialists to no avail are my LLMD and my functional medicine practitioner, best decision ever. The only "specialist" you will ever find me consulting is when i need surgery or when i want a certain test done.

One quick question. I have to start intravenous antibiotics soon for a period of 3 months. the dilution consists of 0,9% NaCl 100ml, 2gr. ceftriaxone and a flush with a bit of heparin.
Might the 100ml IV NaCl solution cause electrolyte problems when on 10 or 20mcg desmo? I will ask both my docs to be sure but would appreciate to hear your experienced opinions as well.

P.s. I had IV abx 6 months ago. The iv ceftriaxone in a 100ml NaCl solution made me feel a bit polyuric but not that bad. the IV azithromycin in a 500ml solution over a 3 to 4 hours course made me feel like hell, having to urinate every 20 minutes or so.

 

[MeSci]

This topic went fast so i'll read the replies tonight.

The only docs i trust after visiting countless of so-called specialists to no avail are my LLMD and my functional medicine practitioner, best decision ever. The only "specialist" you will ever find me consulting is when i need surgery or when i want a certain test done.

One quick question. I have to start intravenous antibiotics soon for a period of 3 months. the dilution consists of 0,9% NaCl 100ml, 2gr. ceftriaxone and a flush with a bit of heparin.
Might the 100ml IV NaCl solution cause electrolyte problems when on 10 or 20mcg desmo? I will ask both my docs to be sure but would appreciate to hear your experienced opinions as well.

P.s. I had IV abx 6 months ago. The iv ceftriaxone in a 100ml NaCl solution made me feel a bit polyuric but not that bad. the IV azithromycin in a 500ml solution over a 3 to 4 hours course made me feel like hell, having to urinate every 20 minutes or so.

I couldn't give an opinion on this but would ask the docs. Maybe they could check your blood electrolytes before deciding what concentration of saline to give you?

 

[heapsreal]

What's Trt?

Testosterone replacement therapy.

 

[Thinktank]

I'm going to hold off the desmo for a while because i'm not very keen on hormone replacement. I know my high PGE2 level is probably the cause of low ADH and complete HPA deregulation. Lowering PGE2 and some other cytokines should reduce the inflammation in the hypothalamus and then everything will balance out.

 

[Thinktank]

The last 3 weeks i have used desmo a few times to stop an acute polyuria attack.
It starts with a inflammatory reaction - tingling feeling in my skin, muscles and brain start to burn a bit and then it's like all the water is being released from my body. I keep on urinating although not drinking any liquid.
I get a bit of a depressed feeling with POTS symptoms, this lasts about 2 hours and then back to normal.

I had my electrolytes tested among other things a few days ago before starting the IV abx treatment for lyme.
My TCO2 is elevated, is there any relationship between polyuria and elevated TCO2?

Sodium = 143 (136 - 148)
Potassium = 4.12 (3.50 - 5.50)
Chloride = 102 (99 - 111)
TCO2 = 30.5 (22.0 - 29.0)
Anion gap = 10.5 (10.0 - 12.0)

Other remarkable findings:
HCT = 42.8 (43.5 - 53.7) low

Neutrophils = 40.0% (46.5 - 75.5) low
Neutrophils count = 1924 (2000 - 7500) low
Lymphocytes = 51.1% (12.0 - 44.0) high
Lymphocytes count = 2458

I seem to have chronic lymphocytosis (not in count but in %) and neutropenia (in count and %). The only time it balanced out was on a high dose prednisone and the previous cycle of IV ceftriaxone.

 

[MeSci]

The last 3 weeks i have used desmo a few times to stop an acute polyuria attack.
It starts with a inflammatory reaction - tingling feeling in my skin, muscles and brain start to burn a bit and then it's like all the water is being released from my body. I keep on urinating although not drinking any liquid.
I get a bit of a depressed feeling with POTS symptoms, this lasts about 2 hours and then back to normal.

I had my electrolytes tested among other things a few days ago before starting the IV abx treatment for lyme.
My TCO2 is elevated, is there any relationship between polyuria and elevated TCO2?

Sodium = 143 (136 - 148)
Potassium = 4.12 (3.50 - 5.50)
Chloride = 102 (99 - 111)
TCO2 = 30.5 (22.0 - 29.0)
Anion gap = 10.5 (10.0 - 12.0)

Other remarkable findings:
HCT = 42.8 (43.5 - 53.7) low

Neutrophils = 40.0% (46.5 - 75.5) low
Neutrophils count = 1924 (2000 - 7500) low
Lymphocytes = 51.1% (12.0 - 44.0) high
Lymphocytes count = 2458

I seem to have chronic lymphocytosis (not in count but in %) and neutropenia (in count and %). The only time it balanced out was on a high dose prednisone and the previous cycle of IV ceftriaxone.

I can't help you on these without spending a lot of time looking through papers - maybe someone else can - it would be interesting. I am in the very slow process of typing up my own abnormal test results (all the ones I have).

So far they have included low haematocrit, low bicarbonate, (very) low sodium, high potassium (possibly artefactual), low creatinine, high neutrophils, low lymphocytes, high albumin, high monocytes, low serum osmolality, low haemoglobin 'estimation' and low red blood cell count.

But some of these were during acute, severe hyponatraemia or inappropriate fluid restriction.

When I have finally typed everything up I will put it in my blog.

 

[Hip]

Would anyone here say that desmopressin has helped with their ME/CFS or POTS symptoms? I understand that desmopressin can increase blood volume, which may have a positive impact on both ME/CFS and POTS (blood volume is low in ME/CFS).

I certainly pass a hell of a lot of water through my system (always drinking and then frequently urinating), but this in itself does not concern me that much. However, if desmopressin could help ME/CFS or POTS symptoms, that would interesting.

With POTS, you should be able to accurately measure improvements by checking your heart rate increase on standing, and seeing if after taking desmopressin this heart rate increase is reduced.


@MeSci, were you able to get desmopressin prescribed by your GP? If so, was it prescribed for polyuria? Desmopressin tablets are a little bit on the expensive side, so I'd prefer a NHS prescription for it.

 

[MeSci]

Would anyone here say that desmopressin has helped with their ME/CFS or POTS symptoms? I understand that desmopressin can increase blood volume, which may have a positive impact on both ME/CFS and POTS (blood volume is low in ME/CFS).

I certainly pass a hell of a lot of water through my system (always drinking and then frequently urinating), but this in itself does not concern me that much. However, if desmopressin could help ME/CFS or POTS symptoms, that would interesting.

With POTS, you should be able to accurately measure improvements by checking your heart rate increase on standing, and seeing if after taking desmopressin this heart rate increase is reduced.


@MeSci, were you able to get desmopressin prescribed by your GP? If so, was it prescribed for polyuria? Desmopressin tablets are a little bit on the expensive side, so I'd prefer a NHS prescription for it.

Yes - but I had to fight to get it prescribed, for polyuria, after a load of tests which found nothing wrong (sound familiar?), and it was stopped at one point without warning, which is what forced me to find an online source. I still use the online source to top up my prescription, as I am afraid of asking for my prescription to be increased in case they reassess me and decide to stop it altogether. I did ask one doctor but he refused and was very rude.

It doesn't seem to help with ME symptoms for me, and I don't have POTS as far as I am aware.

 

[Thinktank]

The polyuria has lessened, i have noticed a link between high-sulfur foods and headache that in turn is followed by a 2 to 3 hour polyuria attack.

 

[Gondwanaland]

Sulfur is highly diuretic for me.

 

[Thinktank]

@Gondwanaland, how are you treating your sulfur sensitivity? By avoidance or something else?

Perhaps the heterozygous mutation on BHMT 2, 4 & 8 is causing problems after all.

 

[Gondwanaland]

@Thinktank
I felt the worst so far when I tried a high thiol exclusion. Loading up magnesium helped to overcome salicylate sensitivity, so now I eat anything except for gluten, nightshades and milk. I have been eating dairy but it bloats me.

Polyuria is under control now, even taking silymarin right now - replenishing magnesium helped a lot with it.

I ask myself if the sulfur sensitivity involves a lack/absorption problems of important metabolism cofactors. After all, sulfur chelates a lot of minerals out of the body.

 

[tdog333]

I know I am necroing an old thread, but is anyone still taking deso? I just got it prescribed today.

I've been in remission from CFS(as long as I keep using equilibrant) for 2+ years, but ive had migraines every day for 6+ months now.

My dr and i think i may have POTS which is triggering the headaches. Here were the results of some tests we did in his office today:

Lieing on exam table: BP 125/72 HR: 75
Sitting up: BP 141/89 HR: 100
Standing up: BP 126/88 HR: 110

From the vitals above it does it seem like POTS?
I'm going to start the desopressin today and titrate very slowly, starting with 0.025/0.05mcg

Any advice or thoughts are helpful, ive never really looked into OI/POTS until a few days ago.

 

[MeSci]

I know I am necroing an old thread, but is anyone still taking deso? I just got it prescribed today.

I've been in remission from CFS(as long as I keep using equilibrant) for 2+ years, but ive had migraines every day for 6+ months now.

My dr and i think i may have POTS which is triggering the headaches. Here were the results of some tests we did in his office today:

Lieing on exam table: BP 125/72 HR: 75
Sitting up: BP 141/89 HR: 100
Standing up: BP 126/88 HR: 110

From the vitals above it does it seem like POTS?
I'm going to start the desopressin today and titrate very slowly, starting with 0.025/0.05mcg

Any advice or thoughts are helpful, ive never really looked into OI/POTS until a few days ago.

I'm still taking desmopressin, but can't answer your other questions. I don't seem to have POTS, just hypertension for reasons unknown. I do occasionally have migraines more recently (in the past few years), which I HATE. Then I can't do anything much for a few hours. Very frustrating. I haven't had any table-tests, I don't think.