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View Diary: A little scared tonight.... (76 comments)

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  •  My K is way better (8+ / 0-)

    At its lowest it was 3.1...now it's 4.2 on spiro. Assuming there's some aldosterone issue, I think my spiro needs to come up.

    "Train yourself to let go of everything you fear to lose." ―Yoda to Anakin Skywalker

    by Auntie Neo Kawn on Tue Jan 29, 2013 at 06:58:22 PM PST

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    •  well that's good (7+ / 0-)


      at least you are in range - when they are testing you!  the problem with electrolytes is you can't watch them all the time!

      "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

      by louisev on Tue Jan 29, 2013 at 07:11:25 PM PST

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      •  Lordy, lordy, lordy .... (1+ / 0-)
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        MKinTN

        I can't believe I'm saying this but all this talk about aldosterone and Na and K and glucocorticoids makes me miss my Addisonian standard poodle, Tucker (060621 - 113012) -
        Black & White Tucker.

        Yes - Addison's is the opposite of what Aunti Neo Kawn and louisev struggle with, and yes, Tucker was canine, not human, but we had the same/similar struggles getting a definitive diagnosis and then getting his meds tweaked until he was perfectly stabilized.  The very best help we got - and maintained for 10+ years - was from other owners of Addisonian dogs.

        The hypothalamic-pituitary-adrenal (HPA) relationship is so very complex - be patient but persistent until you learn what you need to know, Auntie!

        Out with the gloomage - in with the plumage!

        by mikidee on Wed Jan 30, 2013 at 05:47:11 AM PST

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        •  well not exactly 'opposite' (1+ / 0-)
          Recommended by:
          MKinTN


          my symptoms are quite similar to Addison's ( adrenal insufficiency.)  The actual effect of adrenal hyperplasia due to enzyme deficiency is - cortisol deficiency, which is the same outcome as in Addison's, and the same effect: exhaustion, adrenal crisis... death.  I don't have complete adrenal insufficiency, though, which is why once I survived chicken pox as a child I didn't die from something else.  However it is similar, and I have to take glucocorticoid supplements to make up for what my adrenal glands don't produce - about 75% replacement.

          "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

          by louisev on Wed Jan 30, 2013 at 06:31:17 AM PST

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          •  Ahhh - missed the cortisol deficiency part. (0+ / 0-)

            In that respect you're right - a lot like Addisonians.

            I was thinking about the mineralocorticoid problems - Primary Addisonians produce little to no aldosterone and, if untreated, can have dangerously/deadly high K and low Na = loooooooooooow blood pressure.  

            Tucker was well maintained on a very small dose of prednisone every day - @.75 mg - and more for stressful times (grooming, if he was ill, dentals, etc.) and 1 ml of DOCP every 28 days to replace the missing mineralocorticoid.  

            In the greater scope of things, management of this disease was completely doable - once we got the diagnosis.  In veterinary medicine as well as human medicine, that seems to be the biggest struggle, especially when the symptoms can "fit" so many conditions.

            Over time I learned to "read" Tucker and was always hyper vigilant re: his moods/affect/poop/appetite. That kind of vigilence is a hard habit to break ....

            Out with the gloomage - in with the plumage!

            by mikidee on Wed Jan 30, 2013 at 07:36:03 AM PST

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            •  it's counterintuiitive (0+ / 0-)


              the name of my condition is 11-beta hydroxylase deficiency, which results in several outcomes; the most devastating of which is the adrenal insufficiency - very low cortisol.  Everyone in the medical world  is extremely concerned about patients taking too many steroids, and the effects of hypercortisolism, but I have learned over the course of time to tell them "My baseline cortisol is 11 micrograms/decaliter without drugs."  And they shut up quickly.  Because it shocks them that I know what that term means and the effects of taking exogenous steroids.  I take 5 mg prednisone a day unless sick, and that's about 75% of 'full replacement' dosage if I had Addison's.  It also interrupts the overproduction of other hormones that cause the blood pressure and other problems as well.

              "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

              by louisev on Wed Jan 30, 2013 at 07:50:41 AM PST

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              •  A maintenance dose and a therapeutic dose (0+ / 0-)

                are totally different beasts.  Addisonian dogs are often started out with a cross between the two, and it's like pulling teeth to get the vets to back down on the pred, even when it's obvious (to the owner) the dog is getting too much (peeing and eating machines).  My spoo weighed a little over 50 pounds and the .75 mg was perfect - for him.

                I find too many people are so fearful of pred they don't see it for the miracle drug it is - sometimes it's the only thing that works; other times it's the simplest solution to an otherwise life-threatening condition.

                I see 11-beta hydroxylase deficiency is autosomal recessive - any knowledge of other affecteds in your family? At one time Addisons was thought to be autosomal recessive in standard poodles but not anymore.  It's still thought to be highly heritable but the mechanism is not known.  Sad - it's a big problem in the breed - diagnosis is usually only during a crisis ($$$$$), too many dogs are misdiagnosed (kidney failure), and it ain't cheap to treat (unless you're willing and able to buy the meds at cost and give the injections yourself).

                Out with the gloomage - in with the plumage!

                by mikidee on Wed Jan 30, 2013 at 09:31:22 AM PST

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                •  i don't have access to my family information (0+ / 0-)

                  except very sketchily.  there have to be, by virtue of the mutation, others with the active disease, and half of my siblings would be carriers.  One of the most notable family history factors in CAH on the whole is low fertility: mainly due to the influence of excess androgen production.  And that is typical in my family as well.  I would very much like to help out the generation moving forward - I have two nieces, but I have no contact with them. I have conveyed all the information I could, but they have little to no interest in anything i have to say. It is quite sad.

                  "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

                  by louisev on Wed Jan 30, 2013 at 11:04:19 AM PST

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