Atypical Cushing’s disease in dogs: Why it’s important to trust your gut and be an advocate for your pet

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betsy-saul-and-dog-jim.jpg

Besty and Jim kayaking

This year my old pooch became fearful, aggressive, crippled and weak, pot-bellied, and incontinent, and started liking sweets. The vets all agreed he was just getting old. I didn’t think so. Here is our story:

About a year ago, Jim the hound dog had an almost overnight quality-of-life change.
He awoke one night in abject terror, whining and shaking with tremors whenever you’d touch him, especially on the head. He didn’t want to sleep alone. That same week he started having trouble with weakness in his hind legs. He had recently started begging to share my pancakes, which was unusual for my normally picky carnivore. Having lost my dogs Max and Kobie to brain tumors, I was certain I was seeing telltale signs of the same awful disease. In a panic, I packed him up and drove him to the vet school for an MRI and was surprised to learn that Jim had a very healthy noggin.

Later that month, my laid-back hound dog became a scaredy-dog. New people and new dogs were especially scary. He’d charge in fear if they came into his yard, couldn’t regain his composure for hours, and on two occasions, he tried to gum his victim into submission (Jim is challenged in the tooth department). This was such a dramatic change, I felt strongly that it wasn’t a natural aging process.


dog on beach photo

Kim’s dog Kona

After lots of testing, the veterinarians were in consensus that he had
some mild neurological issues but the rest was probably just old age.
While all this was happening, Kim Saunders,
Petfinder’s first employee, was struggling with a mysterious ailment
afflicting her senior pooch, Kona. Through persistence, independent
research and the help of a long-distance, invaluable veterinarian
friend, she miraculously learned about ATYPICAL Cushing’s disease –
basically, Cushing’s disease that doesn’t follow the rules. Cushing’s, which can
cause appetite shifts, mood changes, muscle wasting, and more, had been
ruled out in both Kona’s and Jim’s cases because their cortisol levels
were normal. Cortisol is one of many metabolic hormones that can go awry
when there is an issue with the adrenal gland, but it is the commonly
accepted marker for diagnosing Cushing’s.

Despite Kona’s own vet’s assurances that this “could not be Cushings,”
Kim insisted on having Kona tested for atypical Cushing’s. Once the
diagnosis was confirmed, she put him on a regimen of melatonin and flax
lignans as well as a more powerful drug that impairs adrenal function.

Meanwhile, I was dealing with an increasingly aggressive senior dog and
feeling as if the vets had given up on us. On the eve of a family
reunion in which I was going to have about 30 people staying with us, I
was at my wits’ end. I will never forget being on the phone with Kim and
having the realization that many of the symptoms our dogs were having
were similar.

With this new information (and fueled by the fear of Jim gumming my old
aunt to a nub), I made a beeline for our local health-food co-op and
placed Jim on the holistic-diet portion of the atypical Cushing’s
treatment (after verifying that it was safe to do so without a formal
diagnosis). Within just two days of melatonin and flax lignans, Jim’s
personality calmed and we had a lovely reunion, with my aunts and uncles
safely enjoying Jim’s (relative) normalcy.

Later that month, blood work sent to the lab at the University of
Tennessee confirmed that Jim did, indeed, have atypical Cushing’s. His
cortisol levels were normal but all the other hormones were way out of
whack. Vindicated!

However, a few months ago, it became clear that Jim’s fearfulness had
returned and his muscles were weakening. Once again, he was afraid to
walk at night, other dogs were terrifying to him, and he’d expanded the
territory he thought he needed to protect. We clearly weren’t managing
his Cushing’s anymore. So back to my local vet school I went, where they
told me they didn’t really think Jim’s issues were consistent with
Cushing’s disease because his cortisol levels were fine. UGH!

As luck would have it, Jim’s symptoms had progressed to the point that
he was having massive panic attacks when he went to the vet (his blood
pressure would spike, his hair would fall out, etc.). On this visit, it
was so bad that when Jim saw the doctor coming, his tongue turned blue,
his stomach distended, and he stopped being able to breath. Convinced
that this couldn’t be a panic attack (more common in cats at the vet,
not dogs), they were worried about bloat. So they rushed to do an
ultrasound of his belly and — voila! — what should they find but a
tumor on his adrenal gland — which had finally grown large enough to
detect. Thank goodness for Jim’s panic attack.
Adrenal tumors can cause unregulated surges of epinephrine — the
chemical that produces the fight-or-flight response. It is a very scary
experience and explains so much of Jim’s behavior over the last year.
Also, atypical Cushing’s disease appears to be commonly associated with
adrenal tumors.

We are now three weeks post surgery (adrenalectomy) in which they found
Jim’s tumor was functional and malignant. His symptoms have all but
subsided (with the exception of his muscular weakness, which, if
reversible, will take some time). He’s back to being a picky carnivore,
he enjoys visitors, fancies moonlight walks with his momma again, and is
becoming quite svelte as his pot belly shrinks before my eyes.

Kim lost sweet Kona at 14 years old. Who knows how his disease would
have progressed if we had known more about atypical Cushing’s? What are
the odds that two senior dogs of two dear friends would have this
disease — a disease that is still, for the most part, unaccepted. How
many dogs diagnosed with old age have a very treatable form of atypical
Cushing’s disease?

Jim’s surgery cost about $4,000, but I have pet insurance
that covers most of it. He’s happily down to a normal amount of daily
pills (the Cushing’s pills counted about 20 a day). We’ve opted not to
do chemotherapy as a follow up because there appear to be no more
tumors, and he’s an old guy who’s already been through chemo once (four
years ago).

I’m relieved that Jim is feeling like Jim, but I remain unsettled that
it was so hard to find a vet who would test for this. The fact that it
took an accidental conversation to discover the syndrome and an
accidental ultrasound to discover the underlying cause makes it worse.
My experience, because of Kim’s research, was relatively easy, but what
are the odds that a pet parent who isn’t entrenched in the
companion-animal industry (or who doesn’t have Kim at her side) would
have ever found the treatment or the tumor?
I write this because I hope it will promote more testing through the
University of Tennessee by vets around the country (thank you, Dr.
Oliver, for your lab’s work on this crazy disease).

Here is a good article
about atypical Cushing’s disease
— but it is fairly technical.
There is very little about it published in layman’s terms. Kim was able to find additional information from the Yahoo group CanineCushings-AutoimmuneCare.

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