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ME/CFS: A disease at war with itself
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Seeking possible explanations for very high ADH.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Graeme, Oct 19, 2012.

  1. Graeme

    Graeme almost there...

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    I'm hoping someone can help me understand what my blood work might be indicating. I'd do the research myself but I've a very limited capacity for reading these days without inciting a sort of PEM. So if anyone can offer something off the top of their head I'd appreciate it very much. The shorter the response the better. Thanks.

    serum osmolality is 306 (ref. 280-300)
    albumin is high-normal
    Sodium is normal
    ADH (vasopressin) is a whopping 53.5 (ref. 0.5-3.5)

    My thirst is normal. I drink about 1-1.5 litres of water per day. I've my fair share of subcutaneous water retention.

    I think nephrogenic diabetes insipidus would be the mainstream interpretation of my labs, but as a ME/CFS sufferer I've to consider other possibilities.

    Apparently central diabetes insipidus (not the nephrogenic variety) resulting from a deficiency in ADH is common in ME/CFS, though I'm not sure why this is. Is it because most PWME's are low in ADH? I think Shoemaker has indicated that ADH is usually deficient in patients with mold-induced inflammation. What I think is happening in my case is my body is relying more and more on ADH to maintain blood pressure as norepinephrine runs low (I've anecdotal evidence to support this). This would be compatible with Cheney and Peckerman's findings about diastolic dysfunction and low cardiac output.

    Am I missing anything?
  2. Valentijn

    Valentijn Activity Level: 3

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    I have low norepinephrine and normal vasopressin, and really bad OI prior to starting treatment a couple weeks ago. I really don't know if your high vasopressin could be compensatory, or from some other ME-related problem :p

    I also have constant swelling for the past couple months, but it's soft tissue swelling, not the sort of edema where the fluids move around when standing up or laying down for a while.
  3. rlc

    rlc Senior Member

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    Hi Graeme, ADH can be increased in many different diseases see http://labtestsonline.org/understanding/analytes/adh/tab/test and http://en.diagnosispro.com/differential_diagnosis-for/adh-antidiuretic-hormone-vasopressin-oxytocin-level-lab-increased/10534-154.html

    Many of the diseases that can cause increased ADH cause the same symptoms as ME such as cancers, MS, Porphyria, Addison’s, brain tumors etc. etc. I feel that because your ADH is so incredibly high and very high levels of ADH are not associated with ME, it would be a very good idea to start looking into other diseases as the cause of your symptoms rather than attributing everything to ME.

    I’m sorry but although high ADH is found in many serious diseases you can’t diagnoses which one it is just from this one test. You need to find a doctor who knows about this or is willing to look at the information in the links above about causes of high ADH and then they will have to tests you for all the diseases that can cause high ADH and can cause the kind of symptoms you have. Then hopefully they will be able to find the cause of your suffering and you will be able to get appropriate treatment.

    Hope this helps

    All the best
  4. Sea

    Sea Senior Member

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    "Many drugs can affect ADH levels. They include:

    Drugs that stimulate ADH release, such as: barbiturates, desipramine, histamine, morphine, nicotine, amitriptyline and carbamazepine.
    Drugs that promote ADH action, such as: acetaminophen, metformin, tolbutamide, aspirin, theophylline, and non-steroidal anti-inflammatory drugs."

    The above is quoted from the site that ric linked to. Is it possible that your high levels are medication induced?
  5. Graeme

    Graeme almost there...

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    Thanks, Sea. I'm not taking any medications.

    Thanks for the links, ric. I noticed viral encephalitis and post viral encephalitis are both on that list of possible causes of increased ADH. And since its known PWME's are far more prone to infections, and the term Myalgic Encephalomyelitis actually denotes encephalitis, I don't think my ADH finding is exclusionary. Moreover my symptoms are most indicative of ME: post-exertional malaise, electrical hypersensitivity, food and chemical sensitivities, not to mention all sorts of other unique challenges that only seem to pop up on ME/CFS boards. That said I will take your advice and follow up for another explanation.

    I'll be taking the test again to make sure it wasn't a mistake, though the osmolality does suggest it may be legit. Valentijn, I do believe it's compensatory, and I convinced my doctor to write me a script for a 24 hr catecholamine collection. If this turns up anything interesting I'll be reporting it here.

    Thanks.
  6. Sea

    Sea Senior Member

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    I hope you turn up something useful Graeme.

    As for it being exclusionary, there are as we know many who are misdiagnosed with ME/CFS who upon further investigation are found to have something else that accounts for the symptoms. Then when they are properly treated their regained health shows they were indeed misdiagnosed.

    On the other hand in my opinion there are those who have been correctly diagnosed with ME/CFS but then subsequently develop some other condition. No disease prevents you from getting something else as well. This when treated properly probably will not change many ME symptoms but may bring some improvement overall. I believe it's really important to follow up on tests which may reveal other illnesses as well.
    Little Bluestem likes this.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Have you had bad sinus infections. I used to get sinus infections that got so bad that my whole head hurt. I assumed that there were enough sinuses scattered throughout the head that when they were all infected it made the whole head hurt.

    I have since read, I do not recall where, that sinus infections develop into encephalitis more easily that most people realize. I now wonder if I have had encephalitis and not realized it.

    I have not had my ADH tested.
  8. Graeme

    Graeme almost there...

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    Actually I just got over a small sinus infection, though I'm not especially prone to them. I've actually recovered faster than those around me, too. Probably has something to do with the fact that I cheat. Being sick with ME/CFS and a natural do-it-yourselfer, I've learned to employ everything at my disposal from things learned online. I can actually wipe out about 80% of colds with heavy grapefruit (2 large) and echinacea (6000mg in gelcaps) in the first 2 days. If that happens not to work the andrographis, astragulus, etc ensure I won't be sick too long. My dad has been sick for 3 weeks, and he's only now starting with saline irrigation. Amateurs!
    ggingues likes this.
  9. Emootje

    Emootje Senior Member

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    I vote for nephrogenic diabetes insipidus:

    nrendo.2011.100-f3.jpg

    If this was a compensation for a low effective circulating volume or due to ADH stimulating drugs/disease I would expect a normal or low serum osmolality.
  10. Graeme

    Graeme almost there...

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    Thanks for the graphs, Emootje. I agree NDI is the obvious interpretation. Still, I can't help thinking there could be something else in my situation. As I stated, I've anecdotal clues that suggest I'm running low on norepinephrine. Also I've no symptoms of DI: my thirst is normal, and so is my urination. I never have to get up in the middle of the night. I should also mention my urine osmolality was 738 mmol/kg, which would put me considerably higher than any of the nephros in the first graph. I've also had high-normal creatinine in the past. Not sure how that might fit in.

    Thanks for the help.

    *Something else I'll mention that may be relevant is that when I'm walking around in the summer heat I tend to get tight, swollen hands. This is doubly so if I've consumed additional salt that day.
  11. Emootje

    Emootje Senior Member

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    High urine osmolality is not what you would expect in NDI. I guess you need some more test to solve this puzzle.
    Hypothyroidism might explain the swollen hands (myxedema?) and the high ADH...

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