Information you should have

I’d like to preface this article with the following statement:

Since 2003, veterinary researchers have published papers^1,2,3 confirming that 90% of SARDS dogs demonstrate elevated adrenal sex steroids. Keep that in mind as you continue.

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In 2017, a client described her experience during SARDS diagnosis.  She was told there was no known cause or cure, and also told to ignore any opposing information found online.  In 2021, I decided to revisit this issue.  I wanted to know if things had improved for SARDS-dog owners. Were they being given the information they needed, and if not, was the information I posted online useful to them?

 

The Survey

I conducted a survey of 50 SARDS dog owners. To read the formal paper click here.

• I asked them if they were told—at the time of SARDS diagnosis— about the likelihood of elevated sex steroids in these dogs.
• I asked them if they pursued sex steroid tests with their general practice veterinarian.
• And if so, I asked them to provide the lab reports.

 

The Results

1. Only one dog owner in 50 was told about elevated sex steroids. And while I’m glad that it was mentioned at all, it wasn’t as though sex steroid testing was recommended or performed at the time of SARDS diagnosis.

 

2. The survey also indicated that once dog owners are informed of the potential for sex steroid excess, about half of them pursue testing for their dog. It can be a challenge to secure testing though, since general practitioners may be skeptical of the need for such diagnostics. Why are they skeptical? Because general practice vets are not informed about the prevalence of elevated sex steroids either.

 

3. As with previous reports, this survey found that over 90% of SARDS dogs demonstrated sex steroid excess. Of those here in the US it was actually 100%.  Now compare that to the rate of Cushing’s disease.  Cushing’s disease is only diagnosed in 20% of SARDS dogs³. That makes sex steroid excess five times more common than Cushing’s. Why is Cushing’s disease (which is an uncommon finding) routinely discussed with dog owners but sex steroid excess (a universal finding) is not?   That bears repeating. Why is Cushing’s disease — diagnosed only 20% of the time — routinely discussed with owners but sex steroid excess — diagnosed a whopping 90+ % of the time — is not?  It’s a rhetorical question. There’s no good reason for withholding this information from dog owners.

 

It’s not as though sex steroid excess is a controversial finding. Elevated sex steroids have been consistently documented for nearly twenty years here in the US. This paper (#51) reported a rate of 90%. This paper reported a rate of 85%.  This paper reported a rate of 98%, and now this survey with a rate of 92%.

 

4. An Unexpected Finding  — My survey also found that 2 of 50 dogs (4%) were euthanized shortly after SARDS diagnosis. When I asked the first of these owners if he was informed about sex steroids, his answer was, “No, not at all. That’s why I had to go find the information myself.  Our dog’s health was deteriorating rapidly and we didn’t know why.”   The second owner described how the dog’s “quality of life had diminished to the point where we couldn’t let her suffer.  She couldn’t hear, see, or control her bathroom habits. She had a collapsed trachea and her weight had nearly doubled.”  At the time of SARDS diagnosis this same owner was told, “Go home, learn to live with a blind dog, and don’t look at Google.”    Got that?

 

“…don’t look at Google.”

 

Also note that these dogs were not euthanized because of their vision loss. They were euthanized because of symptoms of uncontrolled sex steroids. To read more about these symptoms, click here.

Back in 2008 the ACVO estimated 4000 cases of SARDS were diagnosed in the US annually. That number is likely higher now. One ACVO survey puts the actual euthanasia rate at 10% ⁴. This could mean that hundreds of dogs are euthanized annually because of untreated sex steroids.  Hundreds of dogs, each year, that might have lived their full life if the underlying hormone problem had been addressed.

Some will counter, “But there are no controlled studies to prove that treatment works.”  You can read my response to that by clicking here.

 

Conclusions from the Survey

So, to answer my original questions, “No, things have not improved for dog owners as they are still denied this information.” And “Yes, making this information available online is useful to them.”  It is the only means by which dog owners learn about elevated sex steroids in SARDS.  Owners may or may not pursue treatment, but they deserve to have this information.

 

Strategies for moving forward

In a perfect world, evaluation of sex steroids would begin at the ophthalmology clinic at the time of SARDS diagnosis. This would be a win-win situation.

It would save clients time and expense because they’d already be in a veterinary facility where a blood sample could be collected and sent off to either NVDS for an E&I panel #1, or to UT CVM for an adrenal sex steroid panel. This time-savings could translate to improved patient outcomes. (To see options for non-USA practices, click here.)

Providing such a service would benefit the ophthalmology clinic, not only as an income stream, but also in terms of perceived service. I’m sorry to say, clients often express frustration about their experience at the ophthalmology clinic. As one owner put it, “I was told, ‘There’s nothing we can do. Thanks for coming in. That’ll be $1,000.’ ”  By collecting a blood sample, the ophthalmic clinic could immediately participate in the care of these dogs.

Furthermore, the ophthalmic clinic should inform referring general practice veterinarians of the prevalence of elevated sex steroids in these dogs and, of course, disclose the results of sex steroid assays. General practitioners may repeatedly test these dogs for Cushing’s to no avail. They deserve to know about the high rate of sex steroid excess, which mimics Cushing’s.

Thereafter, dog owners would return to the general practice clinic where the referring veterinarian could manage low-dose hormone replacement.  In a more perfect world, the ophthalmic clinic would actually discharge the patient with sufficient low-dose cortisol replacement to maintain the dog until the general practice appointment.  This is very different than the anti-inflammatory dose that’s been prescribe for many years without benefit. This would be a win-win-win scenario.

 

Closing thoughts

The fact that dog owners are continually denied this information is astounding. Sex steroid excess is a long-standing, well-described feature of SARDS documented by both veterinary ophthalmologists and veterinary endocrinologists. Their papers have been published in the Journal of the American Animal Hospital Association and Veterinary Ophthalmology^2.3.

Twenty years and more than 90% of dogs. This is not opinion. Practitioners should read their history, tell their clients, and stop acting like I’m making this stuff up.

 

Caroline

 

References

1. Carter RT, Bentley E, Oliver JW, Miller PE, Herring IP. Elevations in adrenal sex hormones in canine sudden acquired retinal degeneration (SARDS) (abstract). 34th Annual Meeting of the American College of Veterinary Ophthalmologists 2003; 34: 40.
2. Carter RT, Oliver JW, Stepien RL, Bentley E. Elevations in sex hormones in dogs with sudden acquired retinal degeneration syndrome (SARDS).
3. Komáromy AM, Abrams KL, Heckenlively JR, Lundy SK, Maggs DJ, Leeth CM, MohanKumar PS, Petersen-Jones SM, Serreze DV, van der Woerdt A. Sudden acquired retinal degeneration syndrome (SARDS) – a review and proposed strategies toward a better understanding of pathogenesis, early diagnosis and therapy.
4. Stuckey JA, Pearce JW, Giuliano EA, Cohn LA, Bentley E, Rankin AJ, Gilmour MA, Lim CC, Allbaugh RA, Moore, CP, Madsen RW. Long-term outcome of sudden acquired retinal degeneration syndrome in dogs. Journal of the American Veterinary Medical Association 2013; 243: 1425-31.