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Poll: Do you have low ADH? (Desmopressin / POTS / Symptom Reduction)

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Jesse2233, Jan 30, 2018.

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Do you have low ADH and has desmopressin (desmo) helped?

  1. I have low / no ADH and desmo has helped

    1 vote(s)
    5.6%
  2. I have low / no ADH and desmo has not helped

    3 vote(s)
    16.7%
  3. I have low / no ADH and have not tried desmo

    6 vote(s)
    33.3%
  4. I have normal ADH and desmo has helped

    0 vote(s)
    0.0%
  5. I have normal ADH and desmo has not helped

    1 vote(s)
    5.6%
  6. I have normal ADH and have not tried desmo

    0 vote(s)
    0.0%
  7. I do not know my ADH levels and desmo has helped

    1 vote(s)
    5.6%
  8. I do not know my ADH levels and desmo has not helped

    1 vote(s)
    5.6%
  9. I do not know my ADH levels and have not tried desmo

    5 vote(s)
    27.8%
  1. Jesse2233

    Jesse2233 Senior Member

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    Who has had their ADH (anti-diuretic hormone) levels checked and found them to be low?

    This has been discussed before but I’ve not seen a poll on it.

    A quick refresher...
    • Antibodies to Arginine Vasopressin / ADH (AVPcAb) have been reported in post viral diabetes insipidus
    • Low ADH has been found in both ME/CFS and POTS patients (Japanese study / clinical reports)
    • Dr Cindy Bateman reports a cured severe POTS / CFS patient using desmopressin (synthetic ADH)
    • A study at Vanderbilt found significant symptom reduction in POTS patients taking desmopressin
    • ADH is linked to water retention, blood volume, tissue perfusion, vasoconstriction, REM sleep, and alpha andrenergic function
    • Symptoms of low ADH include POTS, thirst, and frequent urination
    • ADH is produced in the hypothalamus
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I have non-existent ADH/vasopressin on all tests (it is too low to measure) but I have not tried desmopressin and do not intend to even though it was once offered to me.

    Edit: I have POTS but I have never had thirst or excessive urination at any point in my illness.
     
  3. ljimbo423

    ljimbo423 Senior Member

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    I have never been tested for low ADH but I do have excessive urination and sometimes excessive thirst. I know my body doesn't hold water very well and often feel dehydrated no matter how much water I drink.

    I have never been tested for POTS either but I think I have a mild case.

    Any connections that you are aware of to neuro-inflammation, mito. dysfunction or low blood flow in the brain?
     
    Last edited: Jan 30, 2018
  4. aquariusgirl

    aquariusgirl Senior Member

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    Yeah really low out of range. Low dose Desmopressin did nothing
     
  5. Jesse2233

    Jesse2233 Senior Member

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    Sorry to hear that, it's so hard to figure out how these things work. What dose did you take and for how long?

    Also will you add your experience to the poll so we have it quantified?
     
  6. Jesse2233

    Jesse2233 Senior Member

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    Mito I don't know but I imagine yes though I'm not sure which way causality would flow

    Low blood flow yes! ADH is related to blood volume and if you're hypovolemic then blood isn't going where you want. This was Dr Batements explanation of how desmopressin essentially cured her patient (tissue perfusion was restored).

    Neuroinflammation possibly. If a proinflammatory cytokine or hormone (eg TNFa, IL-6, PGF2a, INFy, IL1b) is impacting the hypothalamus (or more specifically the pituitary) then yes it could reduce ADH.
     
    Isaiah 58:11 and ljimbo423 like this.
  7. Jesse2233

    Jesse2233 Senior Member

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  8. Diwi9

    Diwi9 Senior Member

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    My ADH was <1.0 L using Quest. I have been on Desmopressin and it helps, my doctor says it will only work by supplementing with sodium (which I do).
     
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  9. Jesse2233

    Jesse2233 Senior Member

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    What kind of benefits do you notice Diwi?
     
  10. Jesse2233

    Jesse2233 Senior Member

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    Interesting!

    In my case I have frequent urination, thirst, and consistently low ADH. The frequent urination and thirst was present a year before post viral POTS onset. Makes me wonder if mild anti-AVP antibodies were present earlier and got kicked up a notch by a virus (tipping me into a functionally disabled state)

    Interested in desmo but wary of the side effects and long term effects
     
    Ema and Gingergrrl like this.
  11. Runner5

    Runner5 Senior Member

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    PNW
    I have Nephrogenic Diabetes insipidus but only go through 2-3 liters per day of water so guess I make enough hormone to limp along. The Nephrogenic form of the illness is caused by Lithium, which I took for five years. I've been off of it for three years but not back to rights yet although my doc says I should recover in time. I don't know if they tested ADH, they did test my kidneys at regular intervals because of my Creatinine was high.

    I do not have POTS, although when my electrolytes get low it causes some similar symptoms I would imagine. I have the inability to stand, I get very weak, dizzy and feel sick. I replace my electrolytes and always carry water with me.

    It is vital to know the location of public restrooms! Haha

    A few things can cause excessive urination / thirst / low electrolytes though not just diabetes insipidus. If you suspect any sort of kidney problem definitely talk to a doctor and get a full blood work up. If you have high blood pressure or regular diabetes especially.
     
  12. Diwi9

    Diwi9 Senior Member

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    Reduced frequency in needing to pee, improved hydration, and initially, improved POTS...but that has gotten worse, now on Midodrine too now, which helps some. Desmopressin improved my functionality and is one of the drugs that helps me live my life out of bed.
     
    Last edited: Jan 30, 2018
    Rlman and Jesse2233 like this.
  13. Gingergrrl

    Gingergrrl Senior Member

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    What can I say... I like to keep things interesting ;)

    I am the opposite and rarely ever feel thirst. If I did not have to take medications that I swallow with water, I would literally forget to drink water for an entire day b/c there is no thirst to trigger or remind me. This is part of my illness but it seems to be the opposite of most people on PR. I was never tested for vasopressin prior to getting sick so I have no idea when it became undetectable on blood tests.

    What do you mean by anti-AVP antibodies? Is having low vasopressin considered autoimmune? I don't remember being tested for autoantibodies, just for vasopressin itself.

    We decided that it would be dangerous for me to try it although at this point, I honestly do not remember why. I think it might have been b/c I do very poorly with things that cause me to retain fluid (like Florinef or IV saline) but there was probably more to it.
     
  14. Ema

    Ema Senior Member

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    I am still waiting for my most recent ADH level, but the last time it was unmeasurable.

    I’m always thirsty and always peeing. Except my bladder is exceptionally large and stretchy due to EDS.

    I’m going to try desmo, I think. Or maybe Lozol. Something because it is getting ridiculous. I’ve always been mildly affected but this seems worse, unlike most of my other symptoms recently. Or maybe I’m just bothered more as I’ve made so many other improvements?

    I’m a little nervous about desmo though. I hear I will have to change my drinking habits? Hopefully I won’t be so thirsty and it won’t be too difficult. But I would love to hear more from people about what form (spray or tablet?) worked best and how to manage it all.
     
  15. aquariusgirl

    aquariusgirl Senior Member

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    What dose are you on?
     
  16. Diwi9

    Diwi9 Senior Member

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    I take 0.05mg AM and 0.025mg PM. I tried upping the evening dose, but it caused some facial bloat in the morning.
     
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  17. kangaSue

    kangaSue Senior Member

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    Found this small study that fits in with this topic;

    https://www.ncbi.nlm.nih.gov/pubmed/27401397
    CONCLUSIONS:
    Both the renin-aldosterone and ADH systems were down-regulated despite the existence of reduction in cardiac preload and output in patients with ME. Desmopressin improved symptoms in half of the patients.
     
    Jesse2233 likes this.

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