Daisy Mae - our sweet Daisy has crossed The Bridge

[doxiesrock912]

Lori,

thank you! I passed that onto the vet via email.
I'm so glad that I found this site!!!!!!

Valerie

[lulusmom]

Hi Valerie and welcome to you, Daisy Mae and Gracie.

I'm sure sorry for the circumstances that brought you here but I'm glad you found us. Dachshunds are definitely at the top of the list of breeds predisposed to cushing's but with only one test, the LDDS, it's difficult to say how long the disease has been progressing. Actually even if you posted numerous values that are consistent with cushing's it would be difficult to know. Both of my dogs were well into the disease by the time they were diagnosed, both peeing and drinking buckets, starving 24/7, panting like a freight train and one with severe muscle wasting. Their symptoms, blood and urine abnormalities, LDDS consistent with cushing's and abdominal ultrasound showing the usual enlarged adrenal glands and liver, pretty much cinched and open and shut case. Not all are that easy and not all are diagnosed correctly. Did Daisy Mae have an active infection when the LDDS test was done? The rest of my comments are in blue text within the body of your post below:

I've suspected that Daisy may have Cushing's for almost a year now since she never fully recovered from a severe reaction to Blue Buffalo Wellness dry dog food 2 years ago, but her vet insisted that it was IBD because she had chronic diahrrea. We have since changed vets to Dr. Toby Kimm of Ragged Mountain in Plainville, CT.

Can you think back when Daisy first got sick and tell me if she had any of the usual symptoms associated with cushing's (huge hunger, excessive peeing and drinking, panting) or did you think cushing's was the reason she nevery fully recovered from the Blue Buffalo Wellness food?

Aside from the diarhhea, she has a markedly increased appetite. I've had to add water to her Royal Canin Dachshund formula to make her eat slower and avoid choking. Now she's drinking a lot of water, recovering well from her first ever bacterial skin infection, and at times seems indifferent toward me.

Those are all definitely symptoms of cushing's.

She had luxating patella surgery in 2005 and has arthritis in that rear leg now which responds well to glucosamine chondroitin MMS? (I think those are beneficial omega 3 fatty acids.)

Dogs with uncontrolled cushing's don't usually feel the aches and pains of arthritis because they are self medicating. Cortisol is the body's natural steroidal anti-inflammatory and with cushing's, their body is floating in excess cortisol. Did your vet confirm that it was arthritis by way of imaging? It is when he treatment drops cortisol levels that arthritis is usually unmasked and becomes painful for the dog.

She's just begun 20mg, once a day of Trilostane and the vet suggests that we do some imaging because she's starting to get the pot belly.

Here are the results of her LDDS test and followed by what the vet had to say in response to my email asking for clarification.

CORTISOL SERIAL 3 (OEX)
Time 1 Pre
Time 2 Post
Time 3 Post
Cortisol Sample 1 8.8
ResuIt verified .

Cortisol Sample 2 Dex - 3.7
Result verified .

Cortisol Sample 3 Dex
Result verified . 4.5

Low-dose dexamethasone suppression test: Normal: Cortisol level less than 1.4 ug/dl 8hrs post-dex.
Hyperadrenocorticism: Cortisol level greater than 1.4 ug/dl 8hrs
post-dex.

If the 8hr post dex. cortisol level is greater than 1.4 ug/dl, the following can be used to difierentiate pituitary dependent hyperadrenocorticism (PDH) from an adrenal tumor : 1. Cortisol level less than 1.4 ug/dl 4hrs post-dex is consistent with PDH .
2. Cortisol level less than half the baseline level at either 4 or 8 hours post-dex is consistent with PDH.
(Samples taken at 2 or 6hrs are interpreted the same way as a 4hr
sample)

If neither of these criteria is met, further testing is needed to differentiate PDH from adrenal tumor Cushings.

NOTE: Approx. 5% of dogs with PDH have normal results. False positives

Vets Response to my email asking for clarification of the results:

Hi Valerie, In response to your questions, we did a dexamethosone suppression test, low dose, as opposed to an ACTH response test. The better test changes about every 4 years, and now the dex suppression test is better, according to both meetings I went to last year on Cushings.

Neither test is optimum as both can yield false positive and negative but experts pretty much agree that the LDDS is their gold standard but even then, there are exceptions. I'm not aware of any formal documentation that opinions change every four years though. The experts I follow haven't flip flopped in the last seven years.

From the results, there is no doubt that Daisy has pituitary dependent hyperplasia, as a more than 50% reduction at either 4 or 8 hours from the baseline indicates PDH.

Granted results are consistent with pituitary dependent hyperadrenocorticism but with this being the only diagnostic test your vet did, there is no way that you can eliminate doubt, especially if there was an active infection.

As for the bloating, it is along with PU and PD, a clinical sign of the disease.

The reason for the pot belly is due to many factors...enlarged liver and redistribution of fat and loss of muscle elasticity due to the catabolic effects of cortisol. A full bladder can add to it but is not the primary cause.

That being said, an ultrasound of the abdomen is always a good idea with any Cushings suspected cases.

It is a very good idea, especially before you begin treatment. Trilostane almost always causes enlargement of the adrenal glands so if done after treatment, it's a bit more difficult to determine if adrenal glands are enlarged because of the disease or the drug. An abdominal ultrasound can also give the vet a really good look at the surrounding organs. With all of the GI issues Daisy has had, did your vet never do an abdominal ultrasound to check for abnormalities?

We can also take new abdominal xrays, as we have been updated to a digital system since your last visit and the contrast is much better.

My dogs have had lots of digital xrays done, primarily by gp vets, and I've learned that I should have saved my money for an abdominal ultrasound as that's what I usually ended up having to pay for when my dogs were diagnosed with cushing's and pancreatitis by internal medicine specialists.

I am still using Trilostane at once daily dosing, as I believe the twice daily is more prone to overdose. I have had three cases in the past month where we had to go to every other day dosing as we were causing signs of Addisons Disease (weakness, megaesophagus collapsing) on the daily dose. I will scan the bloodwork in following. - Toby Kim

There is a study that showed a good many dogs on twice daily dosing needed a smaller total daily dose than those on once daily dosing; however, any dog can be overdose on either dosing regimen. Trilostane has a very short half life with it's effects waning any time after 8 or so hours. Every other day dosing is therefore not an effective approach to adequate control of cortisol. I would be very concerned about any vet's level of knowledge if he overdosed three dogs in one month and switched all of them to every other day dosing because once daily dosing was too much. It's not the frequency of the dose, it's the amount of drug you are giving once or twice a day. Some dogs do require a smaller dose and some dogs require a larger dose which is why the acth stimulation tests should be given in accordance with the published protocol. For Trilostane, the first test should be done 10 to 14 days after dosing starts, then 30 days and if no adjustment is necessary at either, every 90 days thereafter.

What else can you tell me about the results? Is she in the beginning stages of Cushing's? The pharmacy said that the 20mg daily dose was on the low end of the spectrum.

The pharmacy would be wrong. Trilostane is relatively new to the U.S. but with increasing favorability by vets, came increasing evidence that the old dosing recommendations are risky. UC Davis did their own extensive studies and they start their patients on 1mg per pound so according to them, Daisy Mae is getting more than twice their recommended dose. The manufacturer of Vetoryl has outdated dosing recommendations in their packaging inserts but have told one of our Admins by phone that they haven't changed those recommendations due to the high costs involved with making the revisions but that they are now recommending that you start with at the low end of the range which is about the same as UC Davis.

Also, is anyone familiar with the Cornell University Veterinary Hospital in Stamford, CT? Going there is an option too.

We've had members who have taken their dogs to Cornell and I believe they have a excellent internal medicine department there. That would be an excellent option.

New surgery options?

Transsphenoidal hypophysectomies are routinely done at the University of Utrecht in the Netherlands but unfortunately, it's not the case here in the states. One of our members and her dog became celebrities when Lucy Goo was accepted to participate in a clinical trial in Los Angeles. Human surgeons did this procedure on dogs with macroadenomas to study the tissue for human medicine. These human doctors taught veterinary surgeons how to perform the procedure but I'm unaware of any vet facility that is doing them. I can only imagine how expensive it would be.

Here's a link to a post by Lucy Goo's mom, Gina.
http://www.k9cushings.com/forum/show...78&postcount=1


There is so much information on the internet that it became overwhelming.

Thank you in advance for your help.

Valerie

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Gracie Daisy

[doxiesrock912]

Hello, Daisy Mae had been on Baytril for the skin infection which was clearing up nicely for almost 2 weeks before doing the LDDS test. Daisy had been sick before the Blue Buffalo ( a different vet assumed IBD), but that incident sent her to Cornell on an emergency basis about 2 1/2 years ago. They didn't mention Cushing's at all that time, but I but I really believe that the Cushing's was at it's beginning stages then. just not up to the levels where they could confirm.

She has had the thirst and extreme hunger for a very long time, when I was told that she had IBD that was my biggest complaint. The extreme thirst has been present for six months, and the recent skin infection is her first ever. Dr. Kimm thinks that the salivary mucuole occured because Daisy scratched too hard in that area and the salivary gland was damaged.

I'm going to get Daisy into Cornell as soon as possible before she's been on the Trilostane for much longer. In just 2 days I see improvement as far as her energy level, having to poop less often, and the frequent urination has also slowed. She appears to be more interested in me once again as well which is another symptom of Cushing's (loss of interest in the owner).

I truly believe that Dr. Kimm is correct with his diagnosis, but I too am concerned about the dosage of Trilostane even though the pharmacy that compounded the mixture assured me that this was on the low end and I did tell them Daisy's breed and weight.

I'm wondering if Dr. Kimm also suspects that Daisy has been a cushdog for the past few years and this is why he starting with 20 mg?

I'll call Cornell on Monday.

[goldengirl88]

Valerie:
I have been wondering if my Tipper could have pharyngeal mucocele. She is always sticking her tongue out and swallowing, making a gurgling sound sometimes. I have been searching everywhere to see if I could find anything out about her symptoms. She never has this before she got Cushings. I hope all is well with your Daisy Mae. Did she have the salivary mucocele condition before the Cushings? God Bless you both.
Patti

[doxiesrock912]

Patti,

Daisy doesn't stick her tongue out but she does swallow often.
Tipper could have one inside of her mouth whereas Daisy's is on the side of her neck. They have many, many salivary glands.

No, she ddn't have it before the Cushing's, but she had a skin infection and the vet believes that she scratched so hard on the outside that she damaged the salivary gland inside.

Does Tipper's fur look dull and dry or smell like a dirty dog more often than usual? She could have a skin infection which Cushpups are prone to.

Take her to the vet, they'll aspirate the mucuole to make sure that it's benign. They can tell by looking at the liquid that comes out whether or not further testing is needed. The procedure didn't bother Daisy at all.

Good luck to you. We're just beginning our "journey" and it's scary but I've learned so much already and I'm going to call Cornell in Stamford, CT on Monday and ask to speak with one of their specialists. I'd rather not pay two places for the same tests and maybe they'll work in conjunction with our vet so that travel can be reduced.

Keep us posted on Tipper

Valerie

[milosmom]

hi valerie and welcome to the best forum for our pups ever !!! people here gave me strength,courage and knowledge when my doxie milo was diagnosed at 5.he lived with this for about a year but his last visit was at cornell in stamford ct which i have to say is an awesome facility !!! sparkle(receptionist)extremely loving and helpful.Dr.Alexandre Rousseau went above and beyond for my milo.unfortunately by the time we got him there(he was in crisis prior at our vet who sent us here)i can highly recommend this facility ...will be watching your story with your furbaby daisy...patty(milo)meka xoxox

[doxiesrock912]

Thank you Patti,

my fiance and I live right next door in Cos Cob and we took Daisy to Cornell once due to the incident with the Blue Buffalo food. I don't that she had Cushing's at the time but I'm positive that she suffered some permanent damage due to that or at least that is how she got what Dr. Kimm thinks was an underlying systemic infection which other vets assumed was IBD.

Daisy, Gracie and I have been staying with my father since June helping him while he recovers from stage 3B lung cancer. So, on top of job hunting, I have a lot going on and really don't want to waste anymore time on unqualified vets.

I'll keep everyone posted.

Thank you again

[goldengirl88]

Valerie:
Tippers fur is dull, but not smelly. Her skin has gotten thinner, she has black speckles on her belly as she is a Jack Russell. The black on her skin is very apparent now. She does however have trachea problems. From the fat redistribution due to Cushings a lot of fat went around her windpipe, causing her trachea problems. That is why I am wondering if she has the pharyngeal Mucocele. She does swallow a lot, and it can come from inflammation. Cushings does cause imflammation. There are many on here who say their dogs do this strange smacking of the lips and throat noises. So this could all be the caused by the Cushings. I feel she is getting some kind of drainage in her throat. It says this can cause breathing problems which she has. I am going to question the Vet about it when I see him next. I just don't even want to think of one more problem on top of what she has already! The picture of Daisy Mae is adorable. Prayers to you both.
Patti

[doxiesrock912]

I know! This is all still so very scary!

[doxiesrock912]

Hello everyone,

Daisy Mae has been on 20mg of Trilostane once a day since 3/14. Tonight, she had a bought of diarrhea that was straight liquid! Of course the vets office is closed and I can't reach anyone there. I know for a fact that she didn't eat anything odd because we go out together and when she does get into something, the stools are very loose not brown liquid.

Any advice until I call the vet in the morning?

Thank you