I’m new! 6yr old Rottie/Catahoula mix recently diagnosed and having quite the time...

Jenni, thanks so much for all this additional info! There’s never a need to apologize for a lengthy post — the more you can tell us, the better ;-).

I have to say that all of your concerns sound perfectly reasonable to me. It’s true that Cushing’s is thought to increase a vulnerability to blood clots, but putting an animal who’s recovering from a GI bleed on a blood thinner is definitely a head scratcher for me, too. In our experience here, blood thinners are not routinely prescribed for Cushpups, and I definitely agree with you that it seems like a very odd choice in Eli’s situation. I also understand your questioning of the high blood pressure. I believe I, too, would want to have more than one elevated reading taken during a high-stress situation to confirm the finding before starting on medication. So after encouraging you to rely on a specialist, I’m coming away with some of the same questions as you.

As far as the LDDS vs. the ACTH, it seems to me as though the majority of experienced clinicians actually prefer the LDDS as their leading diagnostic, but with the following caveat. Both tests are vulnerable to “false positives” if a dog is suffering from an illness or physical stress other than Cushing’s. However, the LDDS is more likely to be skewed in this manner than is the ACTH. So if a dog has other known physical ailments, the ACTH may indeed be the more reliable test. The trade-off is that the ACTH is more likely to miss diagnosing Cushing’s (“false negatives”) in a dog who truly suffers from it. So in my own mind, which of the two tests is “better” really depends upon the situation that is specific to each individual dog. Now knowing that Eli was suffering from these other underlying issues, the ACTH might indeed have been a more reliable diagnostic option for him. But given his overall symptom profile, I personally don’t doubt that he truly has Cushing’s.

So what to do now... I agree that it’s far less than ideal to have to speak to a different vet whenever you have questions. In a non-emergency situation, it seems as though you ought to be able to arrange to consistently talk with a single specialist who’s in charge of Eli’s care. If this practice can’t make that happen, then perhaps a different group would be a better option. However, if logistics are such that you’d rather stay with them, I’d encourage you to press them on scheduling a time that you know you’ll be able to speak to the vet you prefer. And then I’d proceed with explicitly asking whether it wasn’t risky to prescribe a blood thinner while Eli was recovering from a GI bleed. And I’d also advocate for a few additional blood pressure readings in less stressful conditions, too. If the answers you get don’t satisfy you, then I’m afraid I’d encourage you to investigate other vet options :-((((. Sheesh!

Marianne

Hello all, I'm back!

So today I took Eli in to have blood work checked and to run another Cushings test before starting medication. (This was at the specialist that we have seen since his ER stint)

I will be picking him up in a few hours and will get exact printouts of the results but the doctor just called and originally said " we are going to start him back on the Vetoryl at a much lower dosage though - 60mg twice a day."

I immediately said that I was hesitant to go that high because of the research I have found showing the scale is more like .3-.5 / lb. So she suggested that we could do whatever I felt comfortable with, maybe 30mg twice daily. I said I even wanted to start just 30mg once daily and see the results to then maybe go 30mg twice daily.

Her input was with how high the test came back and how progressed his symptoms are ( specifically stating the muscle degeneration in his legs and his head) she thinks that a higher dosage will be needed to make a difference. She is fine with me slowly weening him onto it and seeing the results as I go.

I was/am mildly bothered by the original suggestion of 60mg twice daily being the suggested "much lower dosage" of the very first trial or 120mg once daily. I would say that basic math puts you at the same dose within 24hrs....

I will post the ACTH test results as soon as I get them today -

ACTH pre. 16.9 ug/dL
ACTH post. 28.1 ug/dL

Good for you, Mom! :cool::cool: Way to hold your ground! :cool::cool: I am also glad the vet was willing to listen and work with your wishes on the 30mg dose. She just may be surprised with the results. ;) Word of caution....DO NOT increase the dose until at least 30 days have passed on the 30mg a day dose. Cortisol continues to drop those first 30 days without a dose increase so Dechra says do not increase during that time frame. If the 30 day ACTH still shows elevated cortisol AND the signs are still strong then a dose increase of no more than 25% is the next step. fyi, Eli should have an ACTH at the 2 week mark after starting then again at the 30 day mark after starting....and it is this 30 day mark that will tell if an increase is needed. And btw a 28ug/dl isn't all that high; my own Trinket registered as greater than 50ug/dl and she was misdiagnosed because of her numerous other conditions. ;) We see post ACTH numbers higher than 28 ug/dl very often so don't let that worry you. You're doing a great job, Jenni!
Hugs,
Leslie

Truly it is so nice to find an outlet where people are actually knowledgable! The doc said that I could just up his dose whenever I felt comfortable - so I’m so glad you told me about the 30 days. Also, she said that 28 was a high reading which is one of the reasons she thought the low dose wouldn’t be very helpful.

Started him on 30mg once a day today so we will see how it goes!

I forgot to mention in my last post that his blood pressure was normal so that made me feel good about never giving him the prescribed blood pressure meds.

So with my experience with the specialist, I am inclined to go back to my regular vet and just continue there- only thing is that he doesn’t do the ACTH testing.. it would be the LDDS testing. Do you think that would be okay to test on in two weeks and 30 days? Or do you think I need to continue with the ACTH?

Well, after encouraging you to seek out a specialist’s guidance, I remain disappointed in the feedback that you’ve been receiving from this particular vet. It just doesn’t appear as though she has had much hands-on experience with Cushing’s treatment. As Leslie has written, a post-ACTH level of 28 isn’t unusually high. Even if it was, it really ought not to have a bearing on the initial dosing formula. Initial dosing is based on weight alone. Period. That is the starting point, and then subsequent testing will reveal how efficiently any given dog is metabolizing the medication, and whether dosing changes are in order. A small dose may significantly reduce cortisol levels in some dogs, whereas a much larger dose is required in other dogs. Again, this has nothing to do with how high the cortisol level was to begin with. Instead, it’s a reflection of how each individual dog physiologically responds to the medication.

Unfortunately, the LDDS only has value as an initial diagnostic test. It cannot be used for trilostane treatment monitoring purposes. The only alternative to performing full ACTH tests is the possible use of pre-pill resting cortisol levels. Dechra, the manufacturer of Vetoryl, has recently issued some recommendations in this regard, and apparently pre-pill resting cortisol levels are becoming widely used for monitoring purposes in the U.K. and parts of Europe. It is not a technique that is as commonly accepted here in the U.S., but you and your regular vet can read more about the related protocol here:

https://www.k9cushings.com/forum/sho...l-(trilostane)

Even using this technique, though, there are still times when complete ACTH tests may be called for. So if you remain with your regular vet, you’ll need to have a backup plan in that regard. It’s really a shame that this particular specialist has turned out to be of such little help to you, but perhaps there’s another clinician in your area with whom you and/or your regular vet can consult. In the meantime, I do hope that Eli responds positively to the medication with as few problems as possible.

Marianne

I come with good news today!

Eli has been on Vetoryl 30 mg once daily for 30 days now and we just got our first test results back after starting the meds

ACTH results before taking any meds:
Pre- 16.9 ug/dL
Post- 28.1 ug/

30 day check up after starting meds:
Pre- 2.5 ug/dL
Post - 4.8 ug/dL

I went back to my regular vet for this test and going forward vs. the specialist because I just feel more comfortable with him - he listens and if I'm the one doing the research and dosage suggestions - might as well!

Another plus the ACTH test at the specialist was $400 and at my vet it was $165

Within the last two weeks Eli has started regaining strength and can now get up on his own (which is a huge improvement to us!!) even on the hardwood. He has much more energy and is waking me up every morning with a nose in my face ready for neck rubs.

All of the Cushings symptoms have gone down - He is still super hungry most of the time but he is also 75 lbs and was at 90lbs before all of this started so.. I am hopeful his weight will come back now that he is starting to regain muscle mass :)

Once again I want to thank all of you..finding this forum has been a Godsend for me! 30 days ago, having the vets tell me that his test results were so high that 30 mg /a day wasn't going to make a difference and wrote me a prescription for 30mg and 60mg because she was so sure that within 30 days I would already switch to the 60mg. Also 30 days ago telling me that with all the muscle mass that has wasted, his Cushings must be so progressed and the muscle loss is more than likely Neurological so it wont get any better.

Having you guys as resources and backup verified my hesitancy to their dosing suggestions and we have already come so far in just 30 days!

Isn't it wonderful to see good results?? It is such a relief and gives us a chance to breath!

Thanks soooooooo much for returning to us with this great update! It definitely cheers all our hearts to hear that things are going well for you guys! Keep up the good work, and please continue to check in. Especially for other newbies who are fretting about treatment decisions, it can be so helpful to know how things are turning out for others who are in the same situation. I’m so glad you feel we’ve been helpful to you, and by returning to us, you are really “paying it forward” by offering inspiration to others who are just a few steps behind you in their own journey.

So once again, thanks so much, and Happy New Year to both you and Eli!
Marianne

What a great update! I am so very glad that Eli is doing so well and beginning to enjoy life again with renewed energy. I don't think I will ever forget that day when Squirt grabbed a toy and started playing for the first time in ages. My heart swelled to 10-times its normal size with pure joy!

Thank you so much for coming back and letting us know how he is doing!