Emma - New Member Post

[emmagirl]

I am so happy to find this site. My 13 year young female dachshund was diagnosed with Cushings Disease in late December 2017 and my vet is not open to talking about any aspect of treatment. She IS a good diagnostician so I let her do the initial ACTH Stim and follow up testing, but I have been searching for a vet with the good sense and compassion to at least talk to the owner of a Cushings dog about any questions that need to be answered.
Ideally a holistic vet, but so far no luck. I had a referral today and I'm waiting for a return call with fingers crossed.

I do not understand everything I'm reading on her lab work results, but ithe vet said her first ACTH Stim test on 12-27-17 showed a cortisol level of 27ug/dl which proved she had Cushings disease. She was put on a compound of Trilostane .01 orally. It is a small amount but I know it is chemotherapy and a very powerful drug. I started to read everything I could find on canine Cushings.

I told the vet that her food was grain free already and asked her advise on other feeding matters. She got upset and said that whole grain free idea was a myth so i dropped it. Then she said she is a nutritionist and would have to charge me extra to explain things to me. So I started looking for a new vet that I can feel is working with me.

I learned how to calculate dry matter to find the ratios of protein, fat and carbs in her wet food and the dry kibbles that I added to her wet food, because almost every article I researched said Cushings dogs need high quality protein, and very little fat and carbs. I found a good food to fit the bill, and started her right away. By the middle of February I started to worry more. It seemed to me that she was drinking more water and acting even more hungry than she was before. In every other sense, her abilities and limitations were no different, except she had to pee more as her water intake increased.


Then I ran across the study of SDG or HMR lignans and Melatonin in treating Cushings dogs and it made so much sense!
I knew the vet would probably have a melt down so I did not discuss with her. Hoping I can find a vet that is behind the science.

I brought Emma in for testing again on March 29th, and the vet said her results were 10ug/dl and she upped her Trilostane dose.
I asked the reference range and she said it is 2-9ug/dl. Is that correct?

Does anyone have any information on the Lignan/Melatonin treatment they can share with me? Does it make a difference if its HMR or SDG lignans?

Emmagirl

[lulusmom]

Hi and welcome to the forum.

It appears your current vet puts herself on a veterinary license pedestal which she feels places her above reproach and certainly above working as a team with her clients. We pet owners play a huge role in our dog's treatment and I'm disappointed that this vet has limited your participation to doing what she says without questions. That's simply not right and not in the best interest of her patients. I am ecstatic that you found us and I'm super glad that you are looking for a new vet. We're here to help you learn so that you can become the best advocate ever for your precious Doxie Girl. You would be surprised by how many of our members have educated their gp vets. We can answer any question you may have and we have some excellent and very credible resources in our Helpful Resource sub-forum so be sure to check it out. Please see my additional comments in blue below.


I am so happy to find this site. My 13 year young female dachshund was diagnosed with Cushings Disease in late December 2017 and my vet is not open to talking about any aspect of treatment. She IS a good diagnostician so I let her do the initial ACTH Stim and follow up testing, but I have been searching for a vet with the good sense and compassion to at least talk to the owner of a Cushings dog about any questions that need to be answered.

The acth stimulation test does not tell you which form of the disease your dog has (pituitary vs adrenal tumor) so an abdominal ultrasound should have been done to make that differentiation as well as check surrounding organs for any non-adrenal issues that may be contributing to symptoms. Was this done and if so, which form of the disease does your girl have?

Ideally a holistic vet, but so far no luck. I had a referral today and I'm waiting for a return call with fingers crossed.

The ideal vet for a cushdog is a board certified internal medicine specialist. They do command a higher price but many of us discovered that they ultimately saved us money and we slept a lot better knowing our dogs were in good hands. Both of my dogs were diagnosed and treated by internal medicine specialists. If this is financially feasible for you, I would highly recommend that you consider this. If you live near a veterinary teaching hospital, they normally have internal medicine specialists on staff and are usually more cost effective. If you let us know what city and state you reside, members may be able to provide a name for you. If not, you can search for one in your area at http://vetspecialists.com/

I do not understand everything I'm reading on her lab work results, but ithe vet said her first ACTH Stim test on 12-27-17 showed a cortisol level of 27ug/dl which proved she had Cushings disease. She was put on a compound of Trilostane .01 orally. It is a small amount but I know it is chemotherapy and a very powerful drug. I started to read everything I could find on canine Cushings.

27 ug/dL is definitely consistent with cushing's. What symptoms does your pup have and how much does she weigh? When did you start treatment and have you had any post treatment acth stimulation tests done? If so, can you share those results with us? I am assuming the .01 oral dose is a syringe (volume) measurement as opposed to the actual milligram dose. Can you please look on the bottle and let us know what the actual dose is? It should look something like 30 mg/ml.

I told the vet that her food was grain free already and asked her advise on other feeding matters. She got upset and said that whole grain free idea was a myth so i dropped it. Then she said she is a nutritionist and would have to charge me extra to explain things to me. So I started looking for a new vet that I can feel is working with me.

I learned how to calculate dry matter to find the ratios of protein, fat and carbs in her wet food and the dry kibbles that I added to her wet food, because almost every article I researched said Cushings dogs need high quality protein, and very little fat and carbs. I found a good food to fit the bill, and started her right away. By the middle of February I started to worry more. It seemed to me that she was drinking more water and acting even more hungry than she was before. In every other sense, her abilities and limitations were no different, except she had to pee more as her water intake increased.

Unfortunately there is no science based information on an appropriate diet for cushdogs but you are right, the rule of thumb is higher quality protein and lower in fat; however, unless your pup is overweight, has a history of chronic pancreatitis or has severe elevations in cholesterol or triglycerides, severe restriction in fat is not necessary. For many, many years, it was thought that cushing's predisposes a dog to pancreatitis but research shows this is no longer the case. Obesity and diabetes are not uncommon in cushdogs and these two things absolutely predispose dogs to pancreatitis so there is that connection. It would help us a lot if you could get copies of blood chemistry and complete blood count (CBC) and share the high and low values, including the reference ranges.

If her cortisol is not being well controlled, you could expect no change or even an increase in drinking and peeing due to normal progression of the disease. It would help us figure that out if you provide us with the results of any acth stimulation tests that were done after starting treatment.


Then I ran across the study of SDG or HMR lignans and Melatonin in treating Cushings dogs and it made so much sense!
I knew the vet would probably have a melt down so I did not discuss with her. Hoping I can find a vet that is behind the science.

Lignans and Melatonin are prescribed for the treatment of atypical cushing's. Dogs with atypical cushing's have elevations in one or more of the intermediate adrenal hormones but their cortisol is normal. These supplements are not effective in reducing cortisol in dogs with pituitary or adrenal dependent cushing's so I believe your current vet prescribed the appropriate treatment.

I brought Emma in for testing again on March 29th, and the vet said her results were 10ug/dl and she upped her Trilostane dose.
I asked the reference range and she said it is 2-9ug/dl. Is that correct?

The therapeutic reference range is 1.5 to 9.1 ug/dL and results within that range are good but only if symptoms have resolved. I previously requested results from all acth stimulation tests above so I am wondering if this is the only acth stim test that has been done since starting treatment? How much did the vet increase the dose?

Does anyone have any information on the Lignan/Melatonin treatment they can share with me? Does it make a difference if its HMR or SDG lignans? See my response above. These supplements are not necessary.

Emmagirl

I look forward to hearing a lot more about your precious girl.

Glynda

[labblab]

Hello to you and your sweet girl — we’re so glad you’ve found us, as well! That’s a shame that your vet is so resistant to answering your questions and engaging in discussion. As far as the actual trilostane treatment protocol, it sounds as though she’s accurate in what she’s telling you. A post-ACTH range of 2-9 ug/dL is considered to be therapeutic as long as satisfactory symptom resolution occurs. If symptoms remain, then dropping to a lower level such as 2-5 may be beneficial. So hopefully the dosage increase will lower her cortisol to a level that is ideal for her. What’s not ideal, though, is for your vet to shun your questions! So I understand why you’re looking elsewhere.

As far as the melatonin and lignans, unfortunately that combo is not generally effective in lowering excessively high cortisol levels. It is recommended by some clinicians and researchers for treatment of certain elevated adrenal hormones other than cortisol. For some dogs, cortisol levels are normal but elevations in other adrenal hormones produce similarly bothersome symptoms. Dogs who do have elevated cortisol typically have elevations in other hormones, too, but treatment of the cortisol takes precedence. So in your dog’s case, the trilostane treatment is appropriate and you’d probably want to hold off on thinking about adding in anything else until you see how she’s doing once her cortisol has been lowered to the desired range. However, if you’re interested in reading more about how melatonin and lignans is used to treat other adrenal hormones, there’s a lot of info on this resource thread:

http://www.k9cushings.com/forum/showthread.php?198-quot-Atypical-Cushing-s-quot-Congenital-adrenal-hyperplasia-like-syndrome-Hyperestrinism

Once again, welcome to you and Emma. And please do keep us updated.

Marianne

[emmagirl]

Thank you for replying Glynda. She did NOT have an abdominal ultrasound. The vet told me there are several test to diagnose Cushings, but the abdominal ultrasound was VERY expensive (she placed an emphasis on very, and that the ACTH would tell her whether she had Cushings or not. Being new to all of this, I was letting her guide the care and treatment at first, before I knew she was not going to work with me be forthcoming with information I needed. So I took her comment to believe that all we were concerned with was finding out if Emma had Cushings. I found a vet that has good reviews and if she gives me a good feeling when I meet her, I will get the ultrasound done. Present vet said its adrenal, but I don't know how she knew that since you said only an ultrasound will tell me. She said it is not Atypical. We need that ultrasound to give me the full rundown, as you said. I know that now

Board certified internal medicine specialist. I asked, and was told there are none in this area. I need to find that out for myself. The city I live in has well over 60,000 population and a major college; its hard to believe i won't find one. This is an internal specialist for animals, right? I live on a fixed income which is not very much but Emma had an issue with IVDD last April and both of my very old rescue cats were very sick last year. My vet bills for the year were over $2,300, but I took on the expense to fight what each of them had. It was a tough, sad year. I eventually lost both of my kitties. Emma recovered from the IVDD which was a miracle but it's necessary for me to be hyper vigilant in making certain she doesn't use steps or jump at any height. The nearest vet teaching hospital is 100 miles away. It would be very difficult. I live in Greenville, NC. Any help locating a specialist or wonderful vet would be a blessing.

Emma is 13 years and weighs 19 pounds. She was 23 when she had the IVDD episode and she and I have worked hard to get her down to 19 pounds. The Cushings has added a level of insanity for me, because when she is hungry every 3 hours she gently whines on and off until the 5 hrs have passed. She ate 3 times a day every 5 hours starting at 8am, like clockwork. Knowing she can't help it and worried she's hurting I now give her some peeled cored apple or fresh vegetables to bridge the gap. Hey, no-one said this was going to be easy. She and I are fortunate I'm retired and I'm home with her.

Her symptoms are excessive thirst, ravenous hunger, peeing very often and when she barks to go out she means now. Weve had two accidents in the house, but that isn't too bad and I'm a lot quicker letting her out. She has a small pot belly, but it's slight.

Her initial ACTH was 12-27-17. She started Trilostane when her med was delivered on January 8th-2018. The first ACTH showed pre-cortisol 2.3, post-cortisol 27. Vet prescribed 50mg/ml suspension. 0.1ml by mouth every 12 hours. She did not drink as much water after i started Trilostane.Second ACTH done 1-30-18.
(Both times she had Ema no more than 2 hours) Results: cortisone 7.5ug/dl. Pre and post was not on test results. I should think it is post. She told me it was 7.5 and said no change to her med. She weighed 20lbs that day. Third test 3-29-18. Cortisol 9.1 Weight back to 19.3 pounds. Vet said cortisol too high and increased her Trilostane to 0.125 for each dose.According to the ref range you gave me, 9 is not high enough to increase the Trilostane. 1/4 more between 0.1 and 0.2 on the syringe for dosing orally. I will ask for CBC blood count. When I asked for results (hard copies) of each test CBC was not included. From your reply it sounds like that should have been standard testing.

I walk her a little strolls every few days. She loves it. I try to always keep her excited about any little thing. She responds to the tone of my voice. i haven't seen her mope around or act depressed. I'm trying to avoid that.

I hope Ive answered everything. I appreciate so much your guidance, and if it wasn't so late at night and Emma wasn't whining to eat something because she isn't asleep yet, I would answer everyone that kindly replied to my post. I will get on that first thing tomorrow.

Sharon (Emmagirl's Mom)

She has decreased her water intake but it isn't noticeable. Hunger has not changed, although the possibility of her being used to getting food every few hours exists

[Squirt's Mom]

Hi Sharon, Welcome to you and your sweet girl, Emma. I have taken the liberty of adding Emma's name to her thread title so it will be easier for you to find. We like to keep all posts and info about each pup in one thread so it is easier to look back thru the history for both members and you yourself. This thread will serve as a sort of diary or journal of Emma's journey for you. ;) Glynda and Marianne have gotten you off on an excellent start so I don't have much to add. I do second your decision to find another vet - the one you posted about is of the ilk that is very dangerous for our cush babies because their arrogance doesn't allow them to work with us or to learn as things change, and they can with Cushing's. It seems every couple of years something changes with Vetoryl because we are still learning about how it actually works and some vets just won't keep up, they know all they need to know :rolleyes:, which poses a serious issue for our cush babies.

The choice of goodies to tide over til meal times are great! She just thinks she starving and I know how painful that is for you to see...but she is not in pain physically. Mentally and emotionally she is wondering what the crap is wrong with you that you won't feed her! :D But she is not in any danger, she's just experiencing the side effects of elevated cortisol. If you've ever had cortisone injections or had to take the Z-Pack of steroids you have an inkling of what she is feeling. It will fade once her treatment has balanced out and the cortisol starts to return to normal. The key at this stage is to not let her train you into giving her all the food she wants right now this second. ;):D Which is hard. I will never forget the look in my Squirt's eyes as her cortisol started to rise - it was heart-breaking and gut-wrenching but I knew the cause and I knew it would go away with correct treatment...and it did. Tho she came into this world a little piggy and remained a little piggy for most of her life, that look in her eyes never came back. :)

I'm really glad you found us and look forward to learning more as time passed. You and Emma are part of our little family here now. Never hesitate to ask questions and we will do our best to answer. You will never be alone again. We will walk with you every step of the way.

Hugs,
Leslie

[emmagirl]

Hi Marianne, thanks so much for writing.
The funny thing about all of the research i did was this same premise kept coming up over and over....

" Cortisol, the stress hormone, is produced in excess in Cushingoid dogs, which is the cause of most of the symptoms. Controlling the amount of cortisol means controlling the symptoms. Flaxseed lignans and melatonin both inhibit different enzymes needed in the production of cortisol. In restoring hormone levels back to normal, flaxseed lignans and melatonin can help manage the symptoms. Studies have found that the combination of lignans and melatonin not only reduce cortisol, but act directly upon adrenal tumor cells, effectively treating both typical and atypical cushings disease."

http://http://cushingsindogs.com/2017/05/07/cushings-in-dogs-treatment-options-overview/

That's why I was confused. I kept reading that melatonin and Lignans (MHR or SDG) could stop the production of the hormones that create cortisol in in dogs.
Controlling the amount of cortisol means controlling the symptoms. I read it everywhere. Even in the info published by the UTCVM.
I guess I was reading what I WANTED it to say... a simple method of controlling cortisol! But i can see by the links that you and everyone else sent to me that it is a lot more complicated. I will continue caring for Emma the best that I can and hoping for a better reading on her cortisol test in 6-8 weeks.

Sharon

[emmagirl]

Hi Sharon, Welcome to you and your sweet girl, Emma. I have taken the liberty of adding Emma's name to her thread title so it will be easier for you to find. We like to keep all posts and info about each pup in one thread so it is easier to look back thru the history for both members and you yourself. This thread will serve as a sort of diary or journal of Emma's journey for you. ;) Glynda and Marianne have gotten you off on an excellent start so I don't have much to add. I do second your decision to find another vet - the one you posted about is of the ilk that is very dangerous for our cush babies because their arrogance doesn't allow them to work with us or to learn as things change, and they can with Cushing's. It seems every couple of years something changes with Vetoryl because we are still learning about how it actually works and some vets just won't keep up, they know all they need to know :rolleyes:, which poses a serious issue for our cush babies.

Thank you for adding Emma's name to the thread title. I noticed it right away! Its a smart idea to keep everyone's info easier to find.

The choice of goodies to tide over til meal times are great! She just thinks she starving and I know how painful that is for you to see...but she is not in pain physically. Mentally and emotionally she is wondering what the crap is wrong with you that you won't feed her! :D But she is not in any danger, she's just experiencing the side effects of elevated cortisol. If you've ever had cortisone injections or had to take the Z-Pack of steroids you have an inkling of what she is feeling. It will fade once her treatment has balanced out and the cortisol starts to return to normal. The key at this stage is to not let her train you into giving her all the food she wants right now this second. ;):D Which is hard. I will never forget the look in my Squirt's eyes as her cortisol started to rise - it was heart-breaking and gut-wrenching but I knew the cause and I knew it would go away with correct treatment...and it did. Tho she came into this world a little piggy and remained a little piggy for most of her life, that look in her eyes never came back. :)

That is good to know. I thought for sure she was in agony so I agonized with her! I'm embarrassed to admit this but I even curtailed my own eating so it wouldn't be harder on her! I eat when she eats! :D

I'm really glad you found us and look forward to learning more as time passed. You and Emma are part of our little family here now. Never hesitate to ask questions and we will do our best to answer. You will never be alone again. We will walk with you every step of the way.

Hugs,
Leslie

Thank you again for writing Leslie. This forum is wonderful. I feel better about Emma feeling better, already!

Sharon

clearly it will take time to get the hang of this! Sorry for the funky formatting.....

[Squirt's Mom]

My Squirt started out Atypical using only melatonin and lignans for a few years. In time, her cortisol did start to rise and it was obvious - like that look in her eyes I mentioned earlier. ;) That combination did not halt the progression of the disease from Atypical to conventional with elevated cortisol BUT I believe it did help keep the cortisol from rising earlier than it did. In addition, we did not have to do the Lyso load - we went straight into maintenance. NOT at all proper procedure for using Lysodren but I was very much in tune with her and knew almost immediately when the cortisol started getting high. There is quite a bit of controversy about Atypical and the effect and role of the intermediate hormones involved in that form of Cushing's. Some believe Atypical is not even a form but more of an early sign. I do believe it is a separate form because of my journey with Squirt and seeing what those supplements did for her and how her disease progressed. Over the years most of the pups I recall who came here as Atypical DID develop conventional Cushing's just as she did but I still hold that Atypical is a form on its own and that the combination of those supplements do address the hormones involved. Melatonin on its own has the ability to lower cortisol at the levels experience with jet lag and is often used in humans for that but it cannot address the excessive levels seen in most cush pups by the time they are diagnosed. So in that respect, Squirt and I were lucky to have caught hers early and to have been able to start treating solely for Atypical before the cortisol took control. Just my 2 cents worth. :)

[emmagirl]

I believe i understand things re: Melatonin and Lignans a little better now. Thanks Leslie. :)

[emmagirl]

I'm very upset that the vet who originally diagnosed Emma's Cushings disease case was so careless or clueless about giving me the information needed to treat Emma correctly. I just read the Sticky posted by lulu's mom about GENERAL GUIDELINES for Dosing and Monitoring Treatment with Vetoryl (trilostane) and I now realize that Emma has not been given the proper treatment to fight this disease.

The guidelines state that she should receive her Trilostane with food........Her vet never told me that, and it is not printed anywhere on the prescription bottle of compounded Trilostane! She was getting it within a 1 and 1/2 hr window, but had I been told, she would have received it with every meal. She will going forward, but what kind of time have we wasted?

What's even more troubling are the standards for ACTH testing that lulu's mom refers to that have been sadly and incredibly ignored by this vet for Emma's testing.

ACTH stimulation monitoring tests are performed between 4 and 6 hours after the morning dose given WITH FOOD. Some vets prefer to perform the test from 2 to 4 hours after the morning dose. Whatever timing a vet chooses, each and every test must be performed at the same time, every time. NEVER fast your dog for this test as results will be invalid.

I dosed Emma at 7:30am and was called to pick Emma up at 10am. Clearly the 4 - 6 hr mark was completely ignored, and since I was never asked to bring Emma back at any specific time between 7:30a and 8:30a for post checking, it was not performed at the same time, every time. The last time (and 3rd time) Emma was tested she had not eaten. So as far as I can tell, none of her tests results have been valid since December 2017. Am I the only one unfortunate enough to have a vet that is so untrained in the testing and treatment for Cushings, or is it more prevalent than we can imagine?

The 1st ACTH stimulation test should be done between 10-14 days after starting treatment. A dose increase is rarely done at this time as cortisol is expected to drift downward over the next few weeks.

Again, news to me. Emma's first ACTH Stim. test was 31 days after starting treatment with Trilostane/Vetoryl. What does that mean regarding the results I received for that test?


The 2nd ACTH stimulation test should be performed 30 days after starting treatment. It is at this point that any necessary dosing adjustments be made.

Her second test after treatment, like the first, was left up to me. I wasn't given a schedule to follow, or even notified by the vet that further testing was needed. I brought her in 30 days after the first recheck. Does that mean that all of her results have been skewed and invalid? I really don't know what to do at this point.

I have made an appointment with a new vet this coming week, and I don't know what to expect. What if this vet is no more knowledgeable than the first one?

I am giving Emma every advantage i can when it comes to her environment, her attitude, short walks for exercise, a diet easier for Cushings dogs to live with....
but is all of this negated by inappropriate testing methods?

[molly muffin]

Hello and welcome to the forum from me too.

The importance of giving the meds with food is that food helps with the absorption of the medication and is considered to be an important part of the treatment. So, likely she hasn't been absorbing her dosage as well as she could be. That being said, you want to also have consistency with testing so that you know what the actual results look like. I do want to let you know about a new testing that vets in Europe have been using effectively, that doesn't require an ACTH but a blood draw prior to giving the dosage of trilostane (vetroyl) and see what the cortisol levels are. This is though to be an even more accurate way to determine how a dog is doing on treatment. I'll quote you what marianne wrote another member and provide the link. You can take that to your vet and see if she would be willing to follow that testing protocol (it is supposedly better and saves money)

Just within the last couple of weeks, those of us in the U.S. have learned that many vets in the U.K. and Europe have shifted away from using ACTH stimulation tests to monitor trilostane treatment unless there is a worry that a dog’s cortisol may have dropped too low. Instead, they are simply measuring resting cortisol right before the next dose of trilostane is due to be given. New research supports the notion that this actually gives better guidance re: the need for dosing increases, and it’s certainly a heck of a lot cheaper. Take a look at this link and the monitoring flowchart that’s included. Your vet may be very interested in this info, as well, and might be willing to investigate it further on your behalf.

http://www.k9cushings.com/forum/show...=1252#post1252

You can also check this thread for possible financial help
http://www.k9cushings.com/forum/showthread.php?212-Financial-Resources-to-help-with-Vet-bills

the important thing is to get her on track with correct testing and giving her meds with food.

[emmagirl]

Thanks very much for this information. I will talk to y new vet about it.

[emmagirl]

Hello all. I have finally found a new vet for my Emma who takes the time to answer the questions I have about Cushings and who firmly believes in the dosing and testing protocols put out by Dechra for Trilostane. I did bump into a problem rather quickly though when she told me Emma would have to come off the Trilostane compound she is taking and start taking the Trilostane pills made by Dechra, only. I want Emma to have every available advantage in fighting this disease, but I wasnÂ’t aware that the compound was inferior. I purchase the compound from RoadRunner pharmacy in Arizona. They have lines and staff dedicated to pet compounding; I never thought it might not be a safe alternative.
When the Dr gave me the price for the new Trilostane pills I could not believe how high it was. I will be paying around $200/month for twice a day dosing for a 20 lb dog. (Emma gained 1 lb in the last month - darn it)

My question is does anyone have any opinions or facts about the compounded version of Trilostane? I do want what is best for Emma, but IÂ’m disabled and the compound was 1/4 of the price - much more affordable for a limited income.

[Harley PoMMom]

Glad you were able to find a vet that will work with you, except for the compounding matter. :( There have been some studies that have indicated that some compounded versions of Trilostane are not as consistent in dosage, however, many of our members here have used compounded products with success, and if I did not feel as though I could afford the cost of brand name Vetoryl, I personally would opt for a compounded Trilostane. Diamondback Drugs has an extremely good reputation with our members so they would be my choice in purchasing the compounded Trilostane.

Lori

[labblab]

Can you tell us what dose of Vetoryl your new vet is proposing for Emma? Even if you opted for a trial of brandname Vetoryl, a monthly cost of $200 seems excessive. In looking back, it looks to me as though Emma was previously taking around 7 mg. twice daily of the liquid compound? You can’t arrive at exactly that dose with Vetoryl capsules, but for instance, Emma could take a 10 mg. capsule in the morning and a 5 mg. capsule in the evening. With that type of dosing, you could buy a thirty day supply of Vetoryl for about $76 from a reputable internet veterinary pharmacy. Even if she were to take 10 mg. twice daily, a thirty day supply need not cost much more than $100. Is this new vet requiring you to buy the Vetoryl directly from her, or will she supply you with a prescription so that you can shop for a more reasonable price?

I believe that both Diamondback and Roadrunner are reputable compounding pharmacies. However, as Lori has noted, some research studies have raised question marks about the consistency and efficacy of certain unnamed compounders. As a result, some vets and owners prefer to use brandname Vetoryl when dosing and pricing allows it to be an option. However, a cost of $200 a month would make Vetoryl an unreasonable option for many people. So unless your new vet will allow you to shop for Vetoryl from a less expensive source, I think it’s unrealistic for her to expect you to switch from a compounded alternative. I’m really sorry if this turns out to be an issue that stands between you two.

Marianne

P.S. Both Diamondback and Roadrunner are accredited by a national board of compounding pharmacies:

https://www.achc.org/compounding-pharmacy.html

And you can check to see whether an internet provider of Vetoryl is credentialed by clicking on the list of pharmacy board verified websites that is given here:

https://nabp.pharmacy/programs/dotpharmacy/

[emmagirl]

Thank you all for your replies. I just called the vets office and was told I can give them the name of an online pharmacy and they will fax the prescription to them. That makes me feel a lot better because I was concerned that she might ask the prescriptions only go through her. That being said, I certainly will use the link to the list of board approved online pharmacies you gave me!

Emma is receiving a Trilostane compound of 50mg/ml per bottle, with instructions to dose her 0.1 ml every 12 hours.

Just a thought about the Trilostane compounding..... I do believe that Roadrunner and Diamondback Pharmacies are reputable and trustworthy. I'm thankful for their compound of Trilostane. I know that Emma's symptoms lessened when I started her on the compound from Roadrunner Pharmacy for the first time on December 28, 2017. I am relieved there is an option for pet owners, like myself, to treat their fur babies for Cushings if they cannot afford the brand Trilostane pills. I have noticed, though, that Emma's symptoms seem to start getting worse as I am nearing the end of her bottled compound, which lasts 1 month.

She drinks more water, is voraciously hungry, very sleepy... to the same extent as before she started taking the compound. This happened twice, with her February bottle and her March bottle. It can all be in my mind, that is for sure. That's what I've been telling myself, but I did google the topic and read it was possible, and today i read a very interesting article on the fight that Roadrunner and other pet pharmacies are having in California to get the laws changed so that they can sell their compounds in that state. It does mention in that article the concern that sometimes, some compounds can lose their effectiveness, in as quickly as 2 weeks.

I don't take that as a reason to stay away from compounds because pharmacies such as Diamondback and Roadrunner have many years of experience and many satisfied customers. It does make me want to fill her prescription a little early though! I haven't ordered a new bottle for April yet because she is going to start on Trilostane pills soon, 10mg once a day, until she has her follow up stim test 14 days later. And I'm nervous about using the bottom of the bottle of compound, and Emma not acting very well. I pray that she gets on her new regime soon, and she starts to feel better again. I am going to buy a box of Trilostane from the vet today, and start Emma on it tomorrow. Next month I will hopefully have found a pharmacy that is not so expensive as this vet's prices.

This is a link to the article in case anyone would like to read it
http://news.vin.com/VINNews.aspx?articleId=44812

[labblab]

Thanks so much for that link, and I’ll be anxious to read it and also to write more to you later on. I’m hoping to catch you before you head to the vet, though. I’m hoping your vet will not actually charge you $200 for one box of thirty 10 mg. Vetoryl capsules. Here’s a link to the pricing page for California Pet Pharmacy. They’re listed on that accredited website, and will charge only $42 for one box. Maybe if you print out this page, your vet will agree to match that price. My own vet will do that as long as the price isn’t lower than his own cost. There are plenty of other internet pharmacy options, as well, but I was able to find this one quickly and wanted to get the link posted as an example.

https://www.californiapetpharmacy.com/vetoryl-10-mg-capsules-30-count.html

Marianne

[labblab]

OK, I’m back again and have had the chance to read that link. It’s very interesting, and just one more chapter in a long book of contentiousness surrounding the oversight of compounding pharmacy practices in the U.S. I will say that my own personal impression is that, over the years, we’ve seen what appear to be more irregularities with liquid trilostane suspensions than with trilo compounded in solid form. And the short shelf life discussed in the link may relate to that. But that’s just my impression. We’ve had members who have had difficulty stabilizing their dogs while taking brandname Vetoryl as well as compounded trilo. However, this is the central research study that has raised the question marks about compounded products.

https://www.researchgate.net/publication/225050578_Pharmaceutical_Evaluation_of_Compounded_ Trilostane_Products

As you’ll see, the pharmacies responsible for the flawed trilo are not identified in the study. As a result, our best advice is to tell folks to search out compounding pharmacies with established reputations and professional accreditation. Everything being equal, I do suggest to folks that they may want to begin treatment with Vetoryl, and only subsequently make the switch to a compounded product after the dog has been stabilized on an established dose. But as I wrote above, whenever cost or dosage size make Vetoryl a hardship, then certainly I’d opt for a compounded product from a reliable pharmacy.

You may find it interesting to look at this summary re: the status of veterinary compounding that was posted on this forum back in 2009. Amazingly enough, a lot of the controversy is yet to be resolved!

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1254#post1254

Marianne

[lulusmom]

Hi and a belated welcome to you and Emma.

I am happy to hear that your vet is willing to call in prescriptions to reputable pharmacies. Shopping prices is great and because we have so many members who buy from online pharmacies, we can share the ones that are most frequently used and recommended. In addition to California Pet Pharmacy for which Marianne has provided a link above, I've provided two more below who are reliable and are highly competitive in their pricing that most cannot beat. I've provided a link to Allivet and Valley Vet and their current prices for 30 ct 10 mg. I've also included California Pet Pharmacy pricing for your reference.

http://www.allivet.com/p-2590-vetoryl-capsules-30-ct.aspx?sku=32100-3&sp=1&gclid=Cj0KCQjwn-bWBRDGARIsAPS1svssKaxOyKVUosnGA21xxvcEC25KMGiOO-e1UJUAw9N2Cu83yYs-LToaAiRBEALw_wcB $38.95 5% off if placed on auto ship. Free shipping on orders over $49 (You can always ask your vet to provide a 60 day supply once you get Emma's cortisol stabilized on an effective dose)

https://www.valleyvet.com/ct_detail.html?pgguid=057ae20c-efea-490b-b89e-562663425dfe&sfb=1&itemguid=cafe68be-e5cb-4c44-b768-263f5aa6361d&utm_content=1008RX&ccd=IFP003&CAWELAID=120295250000433149&CATARGETID=120295250000447538&cadevice=c&gclid=Cj0KCQjwn-bWBRDGARIsAPS1svsoDYFtKDLNJlHj5B6LTKEd4t2XNCb7c_tp M3wUs2pNBjo6PFknfUcaAivcEALw_wcB $38.95 Free shipping on orders over $59.00

https://www.californiapetpharmacy.com/search-page.html?Search=10mg+vetoryl $41.95 Free shipping on orders over $100

Glynda

[labblab]

I’m so glad Glynda added these additional resources. Yet one more that comes to mind is Lambert Veterinary Supply. I just checked and their current pricing is the same as California Pet Pharmacy. All four of these pharmacies are on the “Safe Pharmacy” list maintained by the National Association of Boards of Pharmacy in the link given above (Allivet is listed under the account name of “Agropec”).

[emmagirl]

Thank you for that link, Marianne. It turns out the estimate that they gave me for Vetoryl for $183 on that first day was for a box of 30mg Vetoryl.
When I went to pick it up that day, (I hadn't read your reply yet) they had given me the wrong estimate. Emma is taking one (1) 10mg a day to start off, which follows Dechra's recommendations to start off at a low dose, and they charged me $83 for a box of 30. Still, that price is high compared to the $42 you mentioned in your post. I will use that pharm if my vet cannot or will not match prices. I'm so happy she has no problem with looking for a lower price.

My new vet gave me instructions to be back in 14 days for the Stim test. I feel relieved that I searched for a more knowledgeable vet, because she is following Dechra's testing and dosing instructions for Vetoryl. I feel even MORE relief and gratitude because when I picked up the Vetoryl, the new Dr told me to STOP giving Emma the Enalapril her former vet prescribed for heart months ago, because Dechra states right on the box insert that beta blockers such as Enalapril are not to be given to a dog on Vetoryl! It is right there in black and white.

It's upsetting that this last vet was so non-compliant with testing and dosing standards, in addition to not knowing the drugs that Dechra advises should not be given with Vetoryl. I think and worry about all the cushingoid dogs she treats, who may not receive the right treatment.

Thank goodness for this forum. I was able to learn so much about procedures that should be followed for dogs with Cushings disease, medications available, even pricing. I believe it's life saving information. I know it has been for Emma. Thank you to all the admins that take the time to read and comment on everyone's stories.

[emmagirl]

Glynda, thanks so much for the additional links. This might be a silly question, but do you know if any of those pharmacies or the ones on the list of board certified pharmacies you provided earlier are located in China?

[labblab]

Since I’m blabbing away on the forum right now ;-), I’ll step in and give an answer to your question about the pharmacies. All the listed pharmacies Glynda and I told you about, both the compounding pharmacies and also the ones selling Vetoryl, are located in the U.S. These two different credentialing bodies only certify American pharmacies. [Editing Note: this info is incorrect — please see my reply added on 4-26 for clarification].

There may still be a China “angle,” however. And historically, this has been one of the contentious issues surrounding veterinary compounding. Brandname Vetoryl is FDA approved, and this means that the base chemicals and the manufacturing of the medication are also subject to FDA inspection and/or oversight. I’d have to check on the current status of Vetoryl production, but historically it had been made in the U.K. using trilostane supplied by a licensed Italian chemical company. Compounded trilostane is not overseen by the FDA, however, and each individual compounding pharmacy can obtain their base chemicals from any source with whom they wish to contract. China does produce a lot of base chemicals, so it’s possible that the active ingredient in any given compounded product may have been sourced from China. FDA “Drug Master Files” are publicly searchable, but compounders may or may not be willing to disclose the source of their chemicals to customers. We are relying on their reputation and professionalism in assurances that their medications are safe and effective, and that’s why the credentialing adds an additional layer of confidence.

Marianne

[spdd]

Just wanted to pop in and tell you I have been reading about your baby. I want to comment on your comment about how thankful you are for this forum. I too a few years back was blindsided by a cushings diagnosis for "mah boy" and new nothing about it. I landed on this forum and can honestly say if it wasn't for them I would have lost him. I too had a vet that almost killed Keesh, she did the testing wrong, gave him meds that put him into addisonian crisis, didn't tell me about prednisone to bring him out of it, then wanted to put him down.... all due to her blatant misdiagnosis. I was fortunate enough to get all my money back from the testing(admission obviously of guilt) and the worst part was the veterinary college agreed with her diagnosis, only because they took an xray and urine sample, nothing more. They were all wrong...... and THIS FORUM SAVED HIS LIFE. We all believe here that we have to be an advocate for our babies, and you sure have come to the right place for the correct and informative information you need. I can't thank the people on here enough for giving me another couple of years with Keesh. Keep up the good work that you are doing, and never hesitate to come on here, these people here are angels.

[emmagirl]

Wow. That is very interesting news. Compounding Trilostane is not overseen by the FDA. Too bad that does not have to be declared on the bottle. Gosh, people really know so little of things that affect them and/or their pets in a significant way. Thank you, Marianne.

[emmagirl]

Thanks for writing, Judi. I certainly agree.... I don't know what would have happened with Emma had I not kept searching for answers and finally wound up here! The more I read the more confused I would get with all the conflicting information, but the good people here know what they are talking about, and do it all out of the kindness of their hearts!

I've learned so many important details on this forum, and was compelled to find a new vet when I realized how badly she was handling Emma's diagnosis, testing, treatment, and how little she really knew about cushings. Its wonderful to think of all the pups whose lives have been saved and prolonged and made better by the angels who keep the forum running. I will certainly do all I can to get the word out about this site!

[labblab]

Awwww, thanks so much for your kind words! And I do want to correct/clarify some info that I supplied above. First, re: the location of pharmacies credentialed by the National Association of Pharmacy Boards — not all of the listed pharmacies are indeed located here in the U.S. Here’s an explanatory statement on the association’s website:


7. Does NABP accept applications from outside of the United States?

Yes. Any member of the pharmacy community, regardless of country location, may apply for .pharmacy; however, there may be a delay. NABP is in the process of creating relationships with regulatory agencies in additional countries outside of the US. If a relationship has not been established in the country where your organization is located, this may delay approval of your application. NABP currently can evaluate applications from .pharmacy community members in the following countries:

United States
Canada
Great Britain
Ireland
Australia
Hong Kong
I apologize for originally giving misinformation about that. Secondly, the FDA can be involved with the registration and associated “spot” site inspections of individual compounding facilities. However, such inspections do not constitute the same involved regulatory framework that binds drug manufacturers that produce actual FDA-approved medications. Per the FDA’s website:


Compounded drugs are not FDA-approved. This means that FDA does not verify the safety, or effectiveness of compounded drugs.

I hope this additional info offers a bit more clarification.

Marianne

[emmagirl]

Thanks Marianne, it does clarify some things. I noticed on the list that all locations are either US or Canada, but I wasn’t aware that the 4 other countries you mentioned could apply for accreditation. That is good information to know when searching for an accredited pharmacy. Thanks again.

Sharon

[emmagirl]

Emma is due to have an ACTH Stim test tomorrow. Her new vet started her on Vetoryl on April 20, and took her off the Trilostane compound. She seemed ok for 2-3 days, then started drinking more water, begging for more food, and now she had the "pot belly" symptom she never had before. About 6 days later she looked and acted like her old self. She stopped drinking water all the time, ate at regular times without whining to me for an hour (whew) and the belly and weight started to go down. I am very relieved, but, she is due for a 14 day follow up ACTH Stim test tomorrow, and the vet wants her fasting.

Every single thing I read on the subject (including this forum) says the results will be invalid if the dog fasts before the test. Isn't this true? Are there exceptions? If fasting will void the test results, what should I do? This is a new vet that I sought out because the previous vet paid no attention to protocols for dosing or testing.
If I question her reasoning for ignoring Dechra's guidelines for testing, (which I will do if needed) I might find myself searching for another vet. She does want to test exactly 4 hours after her Vetoryl dose, which is correct, but fasting?????

Is the fasting a definite mistake? I hope I can get your opinion before tomorrow morning. I really don't know what to do.

Thanks again for your help, Sharon

[labblab]

I’m afraid that fasting is indeed a definite mistake. Fasted cortisol levels will be higher than would be the case if the Vetoryl was taken along with a meal, complicating dosing decisions now and in the future. Here are some resources for you to refer to.

First is a publication by Dechra themselves, maker of Vetoryl. Scroll down to the sixth page of the pdf — the page that’s headed with “Step 3: Monitor.” Under the “Important Details to Remember,” you’ll see that Vetoryl should always be given with food, including on the morning of the monitoring ACTH test.

https://drive.google.com/file/d/0B5RToo4GC5HPSlBUemlDZ09oejQ/view

Here’s another article, authored by Dr. Peterson, that you can print out for your vet:

https://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html

Here’s an excerpt from Dr. Peterson’s article:


With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.

When a dog ‘s food is withheld, the absorption of trilostane from the gastrointestinal tract is decreased. This leads to low circulating levels of trilostane, resulting in little to no inhibition of adrenocortical synthesis. Therefore, serum cortisol values will higher when the drug is given in a fasted state than when it is given with food.

The higher basal or ACTH-stimulated cortisol results could prompt one to unnecessarily increase the daily trilostane dose. That misjudgment may lead to drug overdosage, with the sequelae of hypoadrenocorticism and adrenal necrosis in some dogs.

Last but not least, you can try to contact Dechra USA directly in their Kansas headquarters. In the past, their technical representatives would talk directly with owners about questions such as this. Even if this no longer the case, they will definitely talk to vets in the event your vet wants more clarification.

https://www.dechra-us.com/contact/technical-support

As awkward as it may be, I would call the vet this afternoon and talk over your concerns. Even if the ACTH needs to be postponed for a day or two in order to get things clarified, that shouldn’t be a huge deal and would be better than getting an invalid test result. A capable vet ought to welcome this information. If the new vet does not, sadly that would be a huge red flag for me in terms of continuing with her care, anyway.

Good luck!!!!!
Marianne

[emmagirl]

:( Thank you Marianne. It’s what I thought, because this forum tries its best to give dog parents the info needed to get the right care for their furry kids. I’ve read that it should be given with food, over and over.
I’m so unhappy to keep going through protocol issues with veterinarians. Confrontation shouldn’t have to be one of the many things we need to deal with when fighting for our fur babies lives.

Thank you for your quick reply.....Sharon

Quick note: called speak with Emma’s vet just now, but she is off on Wednesdays. So I rescheduled Emma‘s test for Friday. I just have a feeling it,s not going to go well when I speak to her tomorrow, because I already questioned her one time about the fasting to see if perhaps I didn’t hear her correctly! Well, all I can do is try. If she is adamant about fasting, it’s back to searching for another vet.

[molly muffin]

Oh gosh, I really do hope that the conversation goes well. You have been through the ringer. Did you try printing off the Dechra instructions?

I would have general type of conversations with my vet. What do you think about? Have you been reading these studies? Just trying to keep it light and then slipping in what I really wanted to impart to her. It was work but helped to not get her feathers ruffled. I didn't have that issue once I switched to the IMS, as my IMS was well up on protocols for trilostane/vertoyl.

[emmagirl]

Hi Sharlene, and thank you for your post. I hope the conversation goes well too. She is a well-known vet with a good reputation in this area and has been for 25+ years. The only reason that Emma and all of my other fur babies have not been under her care all these years might seem crazy to others, but when I brought Emma to her office at 6 weeks old in 2004 She was seen by another vet because it was her day off. This fill-in vet told me i was mistaken when I said that Emma was a dapple red long-haired Dachshund. She told me there was no such thing as a dapple dachshund!

That worried me and I never went back. Fast forward 13 years and the highly respected vet I did not get a chance to meet that day is claiming Dechra’s recommendations are optional? At least, that is what it sounds like. I’ll know for sure tomorrow when I ask her, as diplomatically as possible, why she wants Emma fasting for the ACTH Stim. test.

I hope I can be as successful as you were, and not ruffle her feathers. I’ve got the reports ready to read the highlighted sentences, and email them if she asks. I hope she’s open to the info - we will know tomorrow.

I’m super tired and a little worn down from this experience, but I’ve had 2 sick fur kitties since 2016 and when one incident was settled, the next would start, so it’s been a tough 2 years. I don’t even ponder at “why” anymore! I Just try to do my best and keep going. I think we all know what that is like.

This board is much more than informative, it connects me to people that truly care, and that is something I never expected, but I’m very thankful for. So, fingers crossed, we will hope for a wonderfully surprising outcome tomorrow. :)

[emmagirl]

I spoke to Emma’s vet this morning and told her I was concerned that she wanted Emma to fast before the ACTH Stimulation test this because Dechra specifically points out that the dog should be tested after taking Trilostane with food.

The vet said that IDEXX, Who does the testing, specifies the dog should be fasting. She said they will most likely refuse to do the test because the dog had not been fasting. This kind of threw me, because I was prepared with everything that Dechra wrote about the testing, w nothing on IDEXX. She went on to further say she would roll with Emma doing the testing on a full stomach but since I changed Emma’s test to tomorrow morning, (so that I could speak with her first) she would not do the test tomorrow since it would be 15 days. She said Emma would then need to stop the Vetoryl! I was sure I was in another mess.

I asked her to check and see if the appointment time was still open for today since Emma had just taken her Vetoryl with food as we spoke, but she was rather upset and told me it was like a doctors office and once you give up an appointment that slot is filled. I had the feeling I was in hot water for questioning her experience. Thankfully, when she got back on the line, she said I could bring Emma in at 12 noon today to do the testing.

I’ve been looking online to find anything IDEXX says about testing , And so far the only thing I could find is that they require the pre- test to be done 4-6 hours after receiving the trilostane.

Does anyone have any documentation from IDX that specifies the dog should be tested with food instead of fasting?

I will post the results of her test as soon as I get them. Thank you all.....
Sharon

[labblab]

The vet said that IDEXX, Who does the testing, specifies the dog should be fasting. She said they will most likely refuse to do the test because the dog had not been fasting.

I just directly called IDEXX USA technical support, and the technician told me that fasting is NOT necessary for a monitoring ACTH stimulation test for a dog taking trilostane. It is fine to test after a dog has eaten. I’m so annoyed with your vet that I could spit right now, but I’ll leave my rant for later. If your vet would like to confirm this info herself, she can call this number:

800-248-2483 - IDEXX In-House Technical Support

[Squirt's Mom]

Sweetheart, I'm going to say this as diplomatically as I can at the moment because I feel the same as Marianne about this vet.

You need to get all your babies records and run, not walk, RUN from this ignorant, arrogant, and dangerous vet now.

And now I'm going to shut-up before I write something I shouldn't. ;)

[labblab]

Plus, per IDEXX’s trilostane dosing and monitoring chart, they specifically state that trilostane should be given with food. It’s true that in the next “box” down the page describing the test procedure, they only say to test four hours after the morning capsule. They don’t explicitly state to test after the morning capsule given with food. But if they were requiring that the dog instead be fasted on that one particular morning, it should be so stated.

http://www.idexx.nl/pdf/en_ie/smallanimal/snap/cortisol/trilostane-dosing-monitoring.pdf

[labblab]

One final comment...it’s true that a nonfasted sample may skew other blood chemistries that your vet may be interested in checking. So this may necessitate a return visit on another day in other to obtain a fasted sample for purposes other than the ACTH. But that’s a separate issue.

[Joan2517]

When my vet treated me like yours did you, I stopped using him and used another member of his staff. You can't work with a vet who won't listen and try to learn. You are Emma's voice. You are willing to learn how this all works. If she is not, like Leslie says....RUN! You will only feel unsure about the treatment Emma is getting if your vet won't listen to your concerns. I trusted my vet with Lena, thought he knew what he was doing, and found out from this forum that he didn't know as much as he thought he did. Lena's been gone for two years and I still think I should have switched vets. It was only after she was gone and he was doing the same thing with me regarding my Sibbie, that I realized I had had enough. You need to have confidence with your vet's treatment when it comes to Emma.

[lulusmom]

If you are going to be doing battle with your vet about fasting vs non-fasting, I highly recommend that you are arm yourself with credible reference material. I am therefore providing links to two sources which are highly credible. If your vet has taken any continuing education in the canine endocrine system, she should recognize the names Dr. Mark Peterson and Prof. Claudia Reusch as both are recognized and well published experts. Both of these references clearly state that trilostane must be given with food. I am also providing a link to the coup de grace of evidence for your vet. This is the Freedom of Information Summary that is part of the New Animal Drug Application for Vetoryl that was submitted to the FDA by Dechra. If you will refer to pages 2, 3, 4 and 5, you will see that dogs in these studies received their capsule with food. If your vet argues with you about this, I would suggest you find another vet who does not place their ego above their patient's welfare. Hopefully that won't be the case and your vet will appreciate that you have taken so much time to educate yourself. I think you are loaded for bear now. :D

https://endocrinevet.blogspot.com/2013/11/protocol-for-acth-stimulation-testing.html

http://www.zora.uzh.ch/id/eprint/100006/1/Reusch_WSAVA_2014_Trilostane.pdf

https://animaldrugsatfda.fda.gov/adafda/app/search/public/document/downloadFoi/855

[emmagirl]

Thank you everyone for your insight and advice on how best to handle this vet, Dr K. I’d like to quickly address each one of your posts, then I will come back and tell you what happened today....

[emmagirl]

I just directly called IDEXX USA technical support, and the technician told me that fasting is NOT necessary for a monitoring ACTH stimulation test for a dog taking trilostane. It is fine to test after a dog has eaten. I’m so annoyed with your vet that I could spit right now, but I’ll leave my rant for later. If your vet would like to confirm this info herself, she can call this number:

800-248-2483 - IDEXX In-House Technical Support
The vet did not dispute Dechra’s directions to do the ACTH test with food. She said since IDEXX runs the testing, she will follow their instructions. I wanted to go in today so badly with documentation from IDEXX stating exactly what Dechra says, to run the test on a dog that had taken the Vetoryl with food, and that a fasting dog would have incorrect results, but I looked everywhere and nothing I found from IDEXX stated that.
I then called IDEXX, but the woman I spoke to said IDEXX would only speak to vets or experts that had IDEXX access, therefore I could not speak to anyone. I asked her didn’t they have a department to answer consumer questions about the ACTH tests that they run, but she said no, so I had no choice but to hang up.
I wish I had that in house number to at least give to the vet, but I don’t think she would have called. She was certain about her statement, and that IDEXX stated fasting. If I had a paper to show her otherwise, she would have had to accept it. You say you were able to speak to technical support, Marianne. Do you have special credentials that allowed you to do that, or was I mislead by the call taker?

[emmagirl]

Leslie, I feel the same as you do. I don’t know if you read any previous posts, but I had already RUN from my previous vet, Dr D, because she was even worse than Dr K! I thought this vet was going to follow all protocols, because she stated that on our very first visit. I told her why I just left my former vet, and the way she talked I was convinced I found the right vet. Then this issue came out right after the testing was scheduled! I could not believe I was being forced to once again school the vet on issues she should know about! I hate confrontation, but this had Emma’s well being in the center of the controversy, and I wasn’t backing down for that reason. So she agreed to run the test if I fed Emma, which I did, and that is also when she told me IDEXX would probably refuse to run the test! I hope that’s not the case - my little girl is not a pin cushion, but she must feel that way by now, since the previous vet ran 3 tests that I discovered were worthless, after reading this informative forum!

[emmagirl]

Plus, per IDEXX’s trilostane dosing and monitoring chart, they specifically state that trilostane should be given with food. It’s true that in the next “box” down the page describing the test procedure, they only say to test four hours after the morning capsule. They don’t explicitly state to test after the morning capsule given with food. But if they were requiring that the dog instead be fasted on that one particular morning, it should be so stated.

http://www.idexx.nl/pdf/en_ie/smallanimal/snap/cortisol/trilostane-dosing-monitoring.pdf
Marianne, I must be missing it! I cannot find the place where IDEXX states the dog should eat, and not be fasting, before running the test. I only see where they say the Trilostane should be taken with food for treatment. Did I miss the testing procedure? If it’s there I’ll send it to her first thing tomorrow! I reread your post just now, and I think you pointed that out. Sorry. My brain is getting full!

[emmagirl]

You’re exactly right. We are testing her cortisol level, and that’s all we should concern ourselves with in an ACTH stim test.

[emmagirl]

That’s why I left my previous vet, Joan. I agree 100%. I’m upset that I have to search again, but I’ll Do so until I find a vet that knows the important info, or at least is willing to listen. Thankfully this forum gave me the information and confidence I needed to insist on Emma’s behalf.

[emmagirl]

I had already found Dr Peterson’s article and printed it, but since her whole argument was based only on what IDEXX had to say, I didn’t show her. Emma was trembling all over, more afraid than I’d ever seen her, so at this point I just wanted her to run the test so I could take Emma home. If I had something from IDEXX, as I said, I wouldn’t hesitate to show her. She let me have the test on my terms, so I was satisfied the results would be accurate.

[emmagirl]

When we arrived for the test, the vet said she had the timer set to go off at 12:10, exactly 4 hrs after Emma was dosed, at 8:10am. This confused me also, as I thought I read Dechra stating anywhere from 4-6 hours, the pre-test could be run, but that was fine with me. The kicker came when I checked out. The receptionist looked up at me, smiling and polite, and said “$250.00”. I was hocked and stared at her for at least 10 seconds before I could speak! I asked her if there was something other than the test on the bill, but there wasn’t. The previous vet charged me $75, and I called other vets offices and the highest price I got was $135. Incredible. I’m still stressed about it. This is the vet who insisted no compounds, only the brand Vetoryl, so I had that increase, and I’m glad she took Emma off the Enalapril and switched to Vetmedin, because she is correct: Dechra states on the Vetoryl insert no beta-blockers, like Enalapril. So I am very grateful to her for that. But even at California Pet Pharmacy, Vetmedin is costly too. Maybe $250 is normal in other parts of the country, but in Eastern NC, that is exorbitant. Last thing: right before they closed I received a voice message from one of the techs at her office. She said Dr k wanted to know if I had been giving Emma one Vetoryl a day or 2. So I wonder why the question was asked. I’m giving her 1 a day, in the morning with her food. 10mg, as prescribed. Jeez, I hope that is correct. Those are the instructions. Emma is 20lbs, and she is doing so well, knock on wood. I’m so happy that she is happy. Sorry if I rambled on. I live alone and don’t have anyone to report to, so again, thank you all for being there, and being so caring. You are all very special. Signing off....Sharon

[labblab]

Dear Sharon,

I often say that I wish I could reach out and give people a real hug, but it was never more true than this morning! I’d dearly love to stick my arms straight through this computer screen and wrap them right around around your shoulders. You are being such a terrific advocate for your little girl. She is soooooo lucky that you are her mom!!!!

And like you, I’m so disappointed that this new vet is behaving in this way. The first vet seemed too lax, and now this new vet seems way too rigid and unfortunately armed with some false information that she refuses to acknowledge.

This is the deal with IDEXX. It’s true that they normally won’t speak directly to owners, but I wormed my way through the backdoor. When I got the initial phone menu, I punched the numbers that put me through to a technician that handles equipment for tests such as the ACTH. I identified myself as an owner, said I know they don’t normally talk to owners, but just had the simple question re: whether or not a dog needs to be fasted for the ACTH. The tech was willing to answer that for me: “No, fasting is not required.”

As far as written info, though, here’s the best I could find. Like you, I’m not finding a statement from IDEXX that says that trilostane should be given with food prior to the test. However, the key issue is really the reverse: unlike your vet’s claim, they don’t require that a dog be fasted prior to that test. And here’s the written proof for that. In their online test directory, they will list if fasting is necessary. Here are two examples.


Trypsin-Like Immunoreactivity (TLI)—Canine*(2011)
2–3 working days | 1 mL serum (RTT preferred) after an overnight fast
Comments: The dog must be fasted for 12 hours prior to specimen collection. This is the recommended test for exocrine pancreatic insufficiency (EPI). The Spec cPL®, Test Code 1849, is the preferred test for pancreatitis.


Triglycerides and Cholesterol Add-on(13701)
8:00 a.m. | 1 mL pleural or abdominal fluid (RTT) or 1 mL serum after overnight fast

Now, here are the instructions for an ACTH:


ACTH Stimulation (One Pre, One Post)- Canine/Feline*(119)
Baseline cortisol, one post-ACTH cortisol

Daily | 1 mL serum per specimen; label tubes as "pre" and "post"

And here are the instructions for a full Cushing’s monitoring panel including blood chemistries, urine, and an ACTH stimulation test:


Cushings Monitoring Profile(2917)
Alkaline phosphatase, ALT, BUN, chloride, creatinine, glucose, potassium, IDEXX SDMA® Test, sodium, total protein, comprehensive CBC, ACTH stimulation (baseline cortisol and one post-ACTH cortisol), urinalysis

Daily | 2 mL serum per specimen, 1 mL LTT, 5 mL urine in a sterile container

You’ll see that not a word is said about fasting being required for the ACTH itself, or indeed for any components of a full monitoring protocol. So where your new vet has picked up that notion, I do not know. And rather than you needing to prove that it’s OK to feed Emma, she really needs to provide proof for her insistence that fasting is required. I will add that IDEXX probably performs virtually all the ACTH tests for our U.S. members, and we’ve not heard of any samples having been rejected because they were nonfasted.

Even the bigger issue for me is the way this vet seems to be trying to bully you. For instance, telling you that if you wait to test on Day 15 rather than Day 14, you’ll have to stop Emma’s Vetoryl. Seriously????? That’s just nuts. And very, very nasty of her since you were delaying the test solely out of your concern over Emma’s welfare. Clearly, she has MAJOR control issues and I don’t know whether you will be able to survive trying to work with her or not. I’m so sorry that you’ve hit another roadblock when you are working so hard to get quality care for Emma. Please know that we applaud you, and we’ll stay right here by your side no matter what!!

Marianne

P.S. Here’s a link to IDEXX’s online test directory. You can type in the name of any test you are looking for, and they will list the necessary protocol, including whether fasting is required.

https://www.idexx.com/en/veterinary/reference-laboratories/tests-and-services/

[emmagirl]

Hi Marianne, thank you for those warm fuzzies; what better compliment to hear than I’m a great mom to Emma, and that other fur baby moms empathize with my experiences.

Your summation of the whole thing is right on the money, I think. If she is adamant about a procedure that’s questionable to a patients family, she should provide her basis. I think she is not used to anyone raising procedural questions. Hopefully, as more pet parents get involved, vets will understand they aren’t being challenged, but they are being held to standards that pet parents are learning.

Even though I will leave her practice as I did with Emma’s last vet, the same looming concern remains.....what about all the other cushiod dogs that are getting invalid test results and being dosed incorrectly????

Well, we got emma’s Test results today. IDEXX did not refuse to run the test, (I don’t think any of us believed they would) and her pre-test was 4.6, her post test was 7.5. So if the test was considered a 14 day after treatment starts test, she is over 1.45 and clinical signs are well. A good result, correct?

It’s a little mixed up because she’s been on Trilostane compound since December 2017, but that is what the vet thought was best. I don’t know any particulars about that, so that’s how it’s rolling.

So unless someone points out something I don’t know about, Emma’s mom is very happy and so is Emma.

So on with a new search.... thank you again fellow fur baby moms.:)

[labblab]

Yes indeed, as long as Emma’s symptoms are well controlled, that is a good result :-))). If symptoms recur or remain, however, she’d be a candidate for a small dosing increase. So we’ll see how things go over time.

For right now, though, congratulations!! Oh, and I meant to mention earlier that, unfortunately, $250 is mot an unusually high charge for an ACTH stim test. I’m actually quite surprised that your original vet was charging significantly less. If you do end up searching for another practitioner, you may want to go in armed with the info to discuss the possibility of this new pre-pill resting cortisol monitoring protocol. It would definitely be a cost-saver and as we’ve discussed earlier, European vets believe it may actually be a superior monitoring tool.

Marianne

[Harley PoMMom]

I agree with Marianne, those are great ACTH stim results if clinical symptoms are controlled. Regarding those ACTH stimulation tests, the reason they are so expensive is because of the stimulating agent, which is usually Cortrosyn. Cortrosyn comes in a .25 mg vial and the instruction on the label says to inject the dog with the entire vial. What most vets don't know is that only a fraction of that is needed for smaller or medium sized dogs. Any remaining Cortrosyn can be stored in the freezer for up to six months. Since Emma weighs 20 pounds, a vet should be able to get five ACTH stimulation tests out of one vial which would be a huge cost savings.

You can read about this on Dr. Mark Peterson's blog for veterinarians, found here: http://endocrinevet.blogspot.com/2011/03/how-to-extend-your-supply-of-cortrosyn.html

Lori

[lulusmom]

It is quite possible that the vets who were charging less than $250 had more experience with the disease and are splitting the vials of cortrosyn which is the stimulating agent used in acth stimulation tests. Your current vet may not know that you do not need to use the entire vial in smaller dogs as much smaller amounts of the agent can be used and the remainder split and stored. The exhorbitant cost of cortrosyn is what drives up the price of a stim test so you have everything to gain by asking your vet if she splits the vial. I have provided a link to a page on Dr. Mark Peterson's Insights into Veterinary Endocrinology entitled, How to Extend Your Supply of Cortrosyn and Lower the Cost of ACTH Stimulation Testing. This page is for veterinarians and provides detailed information on how to split and store the stimulating agent for future use. Members have saved several hundreds of dollars by asking their vets to do this. At 19 lbs, your vet should be able to get 5 acth stimulation tests out of one vial of cortrosyn.

https://endocrinevet.blogspot.com/2011/03/how-to-extend-your-supply-of-cortrosyn.html

[emmagirl]

I've seen that topic and read a little about it. Do you think American vets are embracing it? I would love to find a vet who is up-to-date with the new resting test; I guess it seems daunting because I still have to find a vet that is at least on board with testing protocols.

Do other people find it difficult to find knowledgeable vets? Is it only in my area? I hope finding the 3rd vet isn't going to be too difficult, but I'll start phoning tomorrow and see how it goes.

Thanks for the info on the pre-pill resting cortisol protocol. If the vet practices testing basics, there's a good chance they know about the new testing protocol. As far as the $250 price, maybe I'll be fortunate enough to wind up with one of the Greenville vets that are charging around $150 for it. Thank you for letting me know that $250 is about average, though.

From what I read on the Dechra flowchart, Emma is within the range 5-9, and is on target. Is the 5-9 reference range correct? Emma can go much longer between meals now, she doesn't bark or whine to eat anymore! She just looks at me around lunch or dinner time, and then waits for me to feed her. She goes well past her prior 5 hour mark now, and it's wonderful to know that she doesn't have that hunger all the time.

I ordered from the California Pet Pharmacy that was recommended in an earlier post, and saving significantly. The 10mg box of 30 that my vet charged me $83 for is costing me $42 at California Pet. I'm very thankful and plan to contact some of the resources provided on this site for help with med costs.

Thank you for taking the time to get back to me; you all have so many posts to read and people to help, everyday! I will write when I have called the rest of the vet offices in Greenville. I'm familiar with some of them and they are the first ones I'll call.

Sharon

[emmagirl]

That is very important news! Hopefully I can find a vet that likes to discuss the way he or she runs the tests without feeling like their knowledge is being challenged. Since my present vet almost refused to do the test because I insisted Emma eat before the ACTH test, I don't think she is the one to discuss THAT with. LOL But I'm hopeful that I will find a vet that follows protocol AND has no problem talking about specifics. I can see that most vets are not accustomed to dealing with pet owners that know about protocols and details of the disease. They should embrace that, rather than feeling threatened, but maybe it's unchartered territory for vets in a small (but rapidly growing) town. I think my best chances are with younger vets.

Thank you for the link to Dr. Peterson's article. I like him a lot. He articles are usually easy to read and understand. He knows what he is talking about; it's his field of expertise. I'll definitely print a few copies to show the vets I will be meeting. Maybe i should start an effort to educate vets in this area about cushings disease and send them Dr. Peterson's reports! Along with Dechra's flowchart and a mention about the dangers of Trilostane and beta-blockers for the heart. My first vet could have and still could use that information. Perhaps, as you suggest, the vet that charged me under $100 for the ACTH test knows about splitting the Cortrosyn. But then her disregard for testing times would be even more egregious. At any rate, I get the feeling that all the moderators have vets that are pro's when it comes to Cushings Disease, so I sort of feel like I'm living in a town that's stuck in the dark ages! But to be fair, I haven't spoken to a majority of them yet, so we'll see.

Five ACTH tests from one vial! What a price break THAT would be. I'll report back on my quest for a vet! I have less than 30 days....

Sharon

[emmagirl]

I agree with Marianne, those are great ACTH stim results if clinical symptoms are controlled. Regarding those ACTH stimulation tests, the reason they are so expensive is because of the stimulating agent, which is usually Cortrosyn. Cortrosyn comes in a .25 mg vial and the instruction on the label says to inject the dog with the entire vial. What most vets don't know is that only a fraction of that is needed for smaller or medium sized dogs. Any remaining Cortrosyn can be stored in the freezer for up to six months. Since Emma weighs 20 pounds, a vet should be able to get five ACTH stimulation tests out of one vial which would be a huge cost savings.

You can read about this on Dr. Mark Peterson's blog for veterinarians, found here: http://endocrinevet.blogspot.com/2011/03/how-to-extend-your-supply-of-cortrosyn.html

Lori

So an obvious question for me is doesn't giving them all of the stimulating agent drive their cortisol levels higher than if they were only given a fraction of it? It sounds like a reasonable question, but I'm sure that isn't the case, or splitting it would not be allowed. It's interesting, though.

Yes, I'm delighted with Emma's test results and diminished, really non-existent clinical signs. No more endless lapping at the water bowl, resultant trips to get rid of it, begging for food all times of the day and night, and big pot belly. We are both feeling better, no doubt. I'm very thankful.

Sharon

[Harley PoMMom]

According to this study: Evaluation of a low-dose synthetic adrenocorticotropic hormone stimulation test in clinically normal dogs and dogs with naturally developing hyperadrenocorticism. (https://www.ncbi.nlm.nih.gov/pubmed/10340075) there wasn't a significant difference in cortisol results when using the 5 ug/dl and 250 ug/dl.


PROCEDURE:

...Each dog with hyperadrenocorticism was given 2 doses of cosyntropin (5 micrograms/kg or 250 micrograms/dog) in random order at 2-week intervals. In these dogs, samples for determination of plasma cortisol concentrations were obtained before and 60 minutes after ACTH administration.

RESULTS:

...In dogs with hyperadrenocorticism, significant differences were not detected between cortisol concentrations after administration of the low or high dose of cosyntropin.

CLINICAL IMPLICATIONS:

Administration of cosyntropin at a rate of 5 micrograms/kg resulted in maximal stimulation of the adrenal cortex in clinically normal dogs and dogs with hyperadrenocorticism.

Lori

[emmagirl]

That is so interesting, Lori. So do you think 1. Most vets know this and do not use the maximum amount of cosyntropin 2. Most vets don’t know this 3. Some vets know this, use the lesser amount and don’t adjust the charges for the test?

I suppose it doesn’t matter. They are going to continue doing whatever they are doing.

Thank you for the info. I’m going to do a little reading on the subject.

[lulusmom]

In our experience a good many general practice vets are not aware they can split the vials of cortrosyn which is why we share this information with members. I believe you are probably correct that some vets are already splitting vials but have not passed on that savings to their clients. I would certainly broach the subject with my vet to figure out if I was being gouged.

[emmagirl]

Good Advice. I wish I had know all the important questions to ask when Emma was first diagnosed, but I believe I'm better equipped now. I've learned so much from this forum. It's basic, non-disputable information, such as testing 4 hours after the Trilostane is administered, and always taken with food.

What is the general opinion of testing in-house as opposed to testing with IDEXX?

Thanks, Sharon

[lulusmom]

Most vets don't do their own inhouse acth stim tests but some that can afford the snap cortisol machine have that capability. Those inhouse snap cortisol machines are actually made by IDEXX so I suspect they've passed stringent testing. If it were me, I would want all tests to be done as identically as possible, so it would be more important to make sure the same lab or inhouse machine is used for each and every stim test.

[emmagirl]

The reason I asked about in-house vs IDEXX testing is the difference in costs. A vet I spoke to today that I’ve known for over 10 years told me she likes to do her own testing, but if anyone requests the ACTH stim test be sent to IDEXX it will certainly be sent to them. In-house cost is $120 and IDEXX testing is $245.

Now, after hearing about the Cortrosyn being split (which she says she has been doing) my question is why does the amount of Cortrosyn being used influence the prices? Is the charge for the ACTH stim test a combined total of the vets price for running the test (which uses the Cortrosyn) and the price to have the test results analyzed either by in-house vets or IDEXX? I didn’t think of that until I reread the last several posts re: splitting the Cortrosyn and bringing the costs down. I’m a little unclear about this.

[lulusmom]

If a vet uses an entire vial of cortrosyn and that vial costs the vet $110, you would be paying for the entire vial plus the vet's mark up which is customary, plus the lab costs and other incidental charges such as hazard disposal and maybe even an office visit. If a vial of cortrosyn is split into five doses, you would be paying $22 instead of $110. Does that make sense?

[emmagirl]

Yes, that makes sense. But what are the general opinions of in-house testing vs sending tests to IDEXX to be be analyzed?

Is one regarded as better than the other?i know that it helps testing results to run the tests consistently, in-house or out. If she constantly uses her own in-house testing I can save over $100 dollars for a vet that believes in her own in-house testing. Is it considered as accurate and reliable as IDEXX? This new vet also believes in splitting the Cortrosyn and has been doing so.

She feels she has more control over in-house testing because she knows the variables are always the same. She has control over amount the of Cortrosyn used in every test, and other testing procedures and testing variables.

She doesn’t strike me as a vet trying to sway the clients decision one way or another.. I’m gullible though and tend to believe the vet with the more caring attitude and gives the client her support in whichever her preference is, as long as they stick to that preference to keep the variables the same.

The decisions are still influencing the vet I choose and want to go with. I know the vet I am presently with wants Vetoryl only, wants to send the tests to IDEXX & still believes it’s best to have the dogs fast before the ACTH test, although she has agreed to let me feed her.

Sorry if this seems trivial, but I’ve been fighting for Dechra protocols since December, and I’m not changing my mind.

Just don’t know enough about where testing should be done though. Hopefully it’s the last item I need to know to get Emma’s cortisol levels checked, rechecked and analyzed correctly.

So without knowing if one is generally better than the other, it’s an uneducated guess.

But if in-house testing is regarded as inferior, I will spend the extra money irregardless of any hardship I will encounter.

I want what’s best for Emma’s chances to have accurate results. It’s that simple for me. Any studies that have shown less consistent results than the other?

If IDEXX claims to have the dogs be fasting, although no info has surfaced as such, are their results more consistent?

Sharon

[lulusmom]

As I mentioned earlier, the in-house cortisol snap test machine which is used by vets with the finances to afford the steep price, is sold by IDEXX. If it were inferior, i highly doubt it would be marketed at all. Could it be a bit off from an independent lab, I suppose it could be but suspect the variance would be negligible. I agree with your vet that if you choose one, stick with it time after time. The timing of the test should also be as consistent as possible as this can make it difficult to compare one to the other. Inconsistent timing as well are not giving with food are definitely a much bigger problem than any negligible variance between an independent lab vs an in-house test. If I were you, I would have no qualms going with the in-house test and saving a lot of money.

I also wanted to mention that IDEXX protocol for monitoring Vetoryl treatment does not say to fast a dog. The acth stimulation test can also be used as a diagnostic tool in which case labs do want dogs to be fasted. Perhaps this is where the confusion lies. I have provided a link to the IDEXX flow chart for purposes of monitoring treatment which clearly states to give the drug with food. I hope this helps but if you still have concerns about outside lab results vs in-house, you can call IDEXX direct and get it from the horse's mouth. Their customer support number is 1-800-248-2483.

http://www.idexx.nl/pdf/en_ie/smallanimal/snap/cortisol/trilostane-dosing-monitoring.pdf

[labblab]

I agree with everything Glynda has said about inhouse vs. outside testing ;-).

And actually, I don’t believe IDEXX requires fasting even when the ACTH is being used for diagnostic purposes. The tech with whom I spoke didn’t state that there was any difference in protocol, and the printed instructions on their website do not give differing instructions, either, depending upon the purpose of the test. Other laboratories may have different protocols, but I don’t believe IDEXX ever requires fasting for an ACTH.

Marianne

[emmagirl]

Thank you Glynda and Marianne. I wanted to know your opinions on in-house versus IDEXX testing to make a decision I felt good about.

And, as you’ve shown me in our earlier posts, a dog should always be given their Trilostane dose with food, before having their ACTH Stim test. Dechra and Dr Mark Peterson stress that point repeatedly and go even further to say if the dog is fasting the results are invalid.

I don’t see any room for misinterpretation. Since the vet running Emma’s 14 day ACTH test disagreed with that, I chose a new vet that does.
Thank you for all your help.

[lulusmom]

Marianne, I just looked through my library and see that I asked Dr. Mark Peterson a year ago if a dog must be fasted for the LDDS test and he said he doesn't feel it is necessary. I just called Antech, which is the other huge lab that we usually see on blood tests, and they said the dog should be fasted for 8 to 12 hours. I also see that Dr. David Bruyette mentioned in one of his articles that the lab should be contacted to determine if they need a fasted specimen so it sounds like every lab has their own protocol.

[labblab]

Glynda, I definitely think that’s true — different labs may have different protocols. So I’ve only been giving the info here that pertains to IDEXX and the ACTH since that’s the lab and test that Sharon is focused on. For what it’s worth, though, IDEXX doesn’t list fasting as a requirement for their LDDS samples, either (and they do list fasting in their service directory if it’s required for a test). That may be a departure from other labs, however. It’s indeed always important to check the individual protocols followed by any given lab.

Out of curiosity, did you ask Antech if they require fasting for an ACTH? They don’t list it as a requirement here, but they don’t list it here for the LDDS, either. So that’s a bit puzzling since they told you fasting was required for the LDDS over the phone.

https://www.antechdiagnostics.com/Resource.ashx?sn=ANTECHAdrenalFunctionTestGuide

Marianne

[lulusmom]

Marianne, I didn't think to ask about the acth stimulation. Ever since the "meal induced hyperadrenocorticism" revelation, I'm of the firm belief that fasting is always best as any dog with this condition will see a rise in cortisol after a meal. It's a rare phenomenon but I would err on the side of caution. Like the LDDS, there is the same differences of opinions for the acth stim test. Some labs say fast, some references say fasting is not necessary unless the dog has high blood lipids and then there is Dr. Peterson who says fat in the blood should not skew the results, which makes sense considering you have to give trilostane with a meal for proper absorption. If I had a dog today that I suspected had cushing's, I would definitely fast my dogs for both of these tests. The woman I spoke to was a local antech facility and to tell you the truth, she wasn't that well versed. I can try calling what looks like the corporate customer service number and ask about both tests. The woman I spoke to yesterday was hesitant to give me any information because I was not a vet. She decided to share the information after I told her that the vets where I live in rural TN can't spell cushing's, much less be well versed in diagnostic protocol.

[Joan2517]

So, if you fast the dog before testing, do you still give them the Trilostane?

[labblab]

Marianne, I didn't think to ask about the acth stimulation. Ever since the "meal induced hyperadrenocorticism" revelation, I'm of the firm belief that fasting is always best as any dog with this condition will see a rise in cortisol after a meal. It's a rare phenomenon but I would err on the side of caution. Like the LDDS, there is the same differences of opinions for the acth stim test. Some labs say fast, some references say fasting is not necessary unless the dog has high blood lipids and then there is Dr. Peterson who says fat in the blood should not skew the results, which makes sense considering you have to give trilostane with a meal for proper absorption. If I had a dog today that I suspected had cushing's, I would definitely fast my dogs for both of these tests. The woman I spoke to was a local antech facility and to tell you the truth, she wasn't that well versed. I can try calling what looks like the corporate customer service number and ask about both tests. The woman I spoke to yesterday was hesitant to give me any information because I was not a vet. She decided to share the information after I told her that the vets where I live in rural TN can't spell cushing's, much less be well versed in diagnostic protocol.

I agree that if I was taking a dog in for Cushing’s disgnostic rather than monitoring purposes, fasting might be preferable even if the lab doesn’t require it for tests involving cortisol levels. If for no other reason, blood might be drawn at the same time for other tests that *do* require fasting to be accurate.

Mainly, though, I guess I am just mean-spirited enough that I don’t want to provide Sharon’s vet any “cover” by suggesting that IDEXX may require fasting for a diagnostic ACTH. They don’t, and that darn bossy vet ought to get her facts straight before inflicting her misinformation on conscientious pet parents! There, glad I got that out of my system ;-).

[labblab]

So, if you fast the dog before testing, do you still give them the Trilostane?

Joan, I think what Glynda was talking about in terms of fasting is when the ACTH or LDDS test is being used to initially diagnose Cushing’s. When the ACTH is instead used to monitor trilostane treatment, the trilostane should always be given with food before the test so that it will be metabolized properly.

If the ACTH is instead being used as a diagnostic test, there is no need to give food. And the LDDS is always a diagnostic. So when used diagnostically, fasting is fine and perhaps even preferred by some laboratories. However, IDEXX is one lab that apparently doesn’t require fasting prior to any ACTH or LDDS testing, regardless of the purpose of the test.

[Joan2517]

Thanks for clarifying, Marianne.

[lulusmom]

Antech is based out of California so I called their West Coast contact number. The rep told me that it is not mandatory to fast for the LDDS or the acth stimulation but they recommend that you do because a meal can cause excess fat in the blood. Emmagirl, thank you for letting us share information on your thread.

Hugs,
Glynda

[labblab]

Thanks for this info, Glynda! I’d say we’ve now really covered our bases (and yes, many thanks also to Sharon for letting us hijack Emma’s thread ;-)))))).

[emmagirl]

Hello all, I’ve been trying to cut out some time to make a comment on your last posts, but I’m due back to the vet in 30 minutes for Emma’s post ACTH test and have a quick question, or comment.

Emma gets so nervous now going to the vet because she knows what’s coming and today she was shaking so much I didn’t know if I was going to be able to hold onto her. She was clearly very stressed and certainly afraid. So I had a thought, how much does that stress affects her cortisol levels and the test results? I know that stress causes more cortisol production and I just wonder if you’ve ever had this question before. Thanks - Sharon

[labblab]

Hi again, Sharon. Gosh, I feel so bad for you and little Emma — I can imagine how tough it is for you to drag her in when she’s so scared and miserable :-(((. Hopefully you’ll be able to space out these vet visits more and more as time goes on.

In answer to your question, yes, stress can elevate cortisol levels. That’s why your own daily observations about her symptom relief or symptom progression are also a very important part of her overall clinical assessment. On an ACTH, I suspect any stress component would have a bigger effect on the initial baseline reading as opposed to the second stimulated value. But I don’t know whether or not that’s actually true. At this point, though, the stress may be a constant whenever you take her in, so you’d still be able to compare her test results in an apples-to-apples fashion.

I hope things went as well as possible for you girls yesterday, and we’ll be anxious to hear the results.
Marianne

[emmagirl]

Hi Marianne,
Emma had her ACTH stim test on May 31, 2018 and IDEXX returned these results:

Pre 1.3
Post 3.4

She had her Vetoryl at 8am with food, and the test was run at noon, 4 hours later. I am a little surprised and slightly concerned with her results. Her prior test was run on 5/3/18 - 14 days after this vet took Emma off Trilostane compound and put her on Vetoryl.
Those results were

Pre 4.6
Post 7.5

What is your opinion on the last results? Do you think either number is too low? The pre is 1 point away from being out of range (IDEXX ref. range)
Her symptoms are under control. She does not drink water all the time, and she is patient about her feeding times. Its harder to keep the weight off, I don't know why. She likes her daily walks and is happy. She isn't lethargic...she stays awake most of the day with naps here and there.

Her biggest problem now is constant itching from flea bite dermatitis which has me flea hunting all day with a flea comb, and just yesterday I tried applying food grade diatomaceous earth on her. Its a daily battle we fight every year when spring rolls around. I will not put her on flea preventative, so I don't know any quick fixes. She also has a bath every week. Sometimes 2 baths. I hate to see her suffer from those darn bites. One flea can cause her a lot of discomfort.

Thanks for your input and anyone else that can provide an opinion on whether the last results seem too low.

Sharon

[labblab]

Hi again, Sharon!

I’m so glad to hear that Emma seems to be feeling so well right now. That’s excellent news :-).

On the face of it, these most recent ACTH results are very good given the fact that she seems to be doing so well with her cortisol at this level. I do understand your hesitation, though, given the fact that the results are indeed lower than the last time around. I’m going to try to put together the timeframe, though, and you’ll please correct me if I’m wrong. I’m thinking your vet vet didn’t change Emma’s dose back in April — it was just the switch from the compounded trilostane to the Vetoryl? Then her level was tested after two weeks, and now it’s been about five more weeks since then.

It’s clear that Emma’s level has come down more since being switched to the Vetoryl. But after about seven weeks since the switch, I would hope that her cortisol level has pretty much stabilized now on this current dose. You take such good care of Emma and watch her so closely, I think you’ll notice any behavioral changes that would signal her cortisol dropping too low. I do understand that you don’t really want it dropping any lower than it is now. But since she’s outwardly doing really well, I’d be inclined to leave things as they are right now. Is that what your vet is suggesting as well? And what timeframe is the vet suggesting for retesting again? Also, remind us as to what dose she’s taking — I’m afraid I’m too lazy to go back and look ;-).

Marianne

[emmagirl]

Hello. I feel like I’ve been away from the forum forever. Each time i start to post, something pops up that needs my immediate attention; most of the time it’s Emma!

When I summarized the dates of her tests and the results, I realized she has had two kinds of testing: ACTH Stim and SNAP Cortisol. I am interested in knowing the difference between the two. Emma’s Testing Timeline:

12/27/17 ACTH stim/IDEXX 2.3 27.6 starts on Trilostane compound - 0.1 of 50mg solution (I might not be stating the the number on the first line on the syringe correctly)

1/29/18 SNAP/in-house? 7.5 (no pre given)
3/29/18 SNAP/in-house? >10 (no pre given) neither of these showed her pre cortisol level, and >10 sounds like an estimate.
All 3 tests done by a vet whose service I left. Not knowing about Cushings yet, I had followed her lead, & None of the tests had specific timing; food, no food was never mentioned. The new vet started from the beginning again. (Poor :( Emma)

4/17/18 New vet. She put Emma on 10mg Vetoryl once a day.
5/4/18 ACTH Stim/IDEXX 4.6 7.5 / 14 day retest rule was followed. Vet wanted fasting then 8am dose. I told vet I would rather she eat, but did dose her at 8am, so she could be tested 4 hours later. Emma stayed on 10mg Vetoryl/day.

5/31/18 ACTH Stim/IDEXX 1.3 3.2 / 30 day retest rule was followed. Dosed at 8am with food, test 4 hrs later. Her next test will be 3 months from this date. I’m concerned they are low, but except for an isolated day here and there, I’m very thankful she is not showing symptoms.

[labblab]

Hey, it’s good to see you girls back again! The difference between the SNAP test and the “plain” ACTH is that the SNAP test was performed on equipment in the vet’s office, while the plain ACTH was sent out to a lab to be analyzed. IDEXX is the outside lab that your vet is using now, and they are also the people that make the SNAP testing equipment. So I’d expect that the results on both types of tests would be similar, but to be totally directly comparable, it’s probably helpful to stick with one or the other for the majority of subsequent tests. It sounds as though your current vet prefers sending the blood to IDEXX for the testing, and that will be just fine to continue that way.

Emma’s May result of 1.3 and 3.2 is really very good — that post level of 3.2 is right in the middle of the ideal therapeutic range. So as long as Emma is outwardly doing well, I think you’re on the right track now :-))). My only cautionary thought is that since her cortisol did continue to drop further during those last two weeks of May while still taking the same dose, there’s always the chance they could still drift further down in the future. But in reality, that chance always exists for any dog — cortisol levels may change and doses may need to be tweaked. So that’s good that you’ll have her rechecked again in August. And as carefully as you watch her, of course you’ll know to take her in sooner if she seems to be unwell.

I know it’s been a long haul, but you’ve done a great job of taking care of Emma and I hope it’ll be smooth sailing now for you throughout the rest of the summer! Thanks so much for checking back with us.

Marianne

[emmagirl]

Thank you, Marianne. It's so good to hear from you again! Thanks for the distinction between ACTH and SNAP tests. And I feel better about her results knowing the post result is midway between low and high.

I would like to ask the community about the food they are feeding their Cush dogs....and other misc. health questions....where would i post those questions?

Enjoy the rest of your summer.....

Sharon and Emma too! :cool:

[labblab]

Sharon, you can go ahead and ask your food and other questions right here on your original thread. That way, people will be able to review Emma’s health history in the event it will affect any of their recommendations to you.

I just have to add how much I love your avatar photo of Emma — she just looks like such a sweetie!

Marianne

[emmagirl]

I don’t know how I did it but I just lost my reply :~( when I finished I clicked on Post Quick Reply and it sent me back to a login page. So I will write again tomorrow- too tired too write again tonight! (Today) Anyway, thanks Marianne for the nice compliment about Emma. She IS a real sweetie and very gentle. She has my heart. ❤️

[labblab]

I’m so sorry you got logged out prematurely! Another member has complained about that recently, so I’m really not sure what’s going on there. If you’re not already doing so, I just want to remind you to make sure to check the “Remember Me” box when you first log in. But if even that’s not helping, two other suggestions: compose your reply elsewhere like in a word processing document and then copy/paste it in here, or else just copy the reply you’ve composed here prior to clicking the “post” button. That way, you’ll still have it saved yourself in case something goes haywire and you’re logged out. We’ll be watching for your new reply later today!

Marianne

[emmagirl]

Hi Marianne, you’re exactly right. I should be composing in Note or any app that saves your work as you write! I know this, but I will get in a time crunch and skip that step and then something happens and wham! I'm spending even more time trying to recover! Lol

Anyway, I’m very excited about the site I just stumbled upon.
http://vetnutrition.tufts.edu

http://vetnutrition.tufts.edu/2018/06/a-broken-heart-risk-of-heart-disease-in-boutique-or-grain-free-diets-and-exotic-ingredients/

The site at vetnutrition.tufts.edu is a clinical nutrition service presented by Cummings Veterinary Medical Center at Tufts University, and provides extensive information on pet nutrition by board certified pet nutritionists at Cummings Veterinary Medical Center. Their blog is Petfoodology, and I have only gotten into one or two articles but realize the importance of a site like this for all pet owners.

One of the articles I read (the second URL above) is by Lisa Freeman, a 20 year nutritionist with a PhD who discusses heart disease in dogs that might be attributable to grain-free diets and other trends in pet food caused dog food makers claims that have no scientific proof behind them. The article explains how " Most nutritional recommendations focus on treating pets that already have heart disease but there is much less information on the role of diet in causing heart disease." The article goes on to say a recent increase in heart disease in dogs eating certain types of diets may shed light on the role of diet in causing heart disease. Ms. Freeman says "it appears that diet may be increasing dogs’ risk for heart disease because owners have fallen victim to the many myths and misperceptions about pet food. If diet proves to be the cause, this truly is heart-breaking to me.

She mentions the trend in new “exotic” ingredients like kangaroo, lentils,duck,pea,Buffalo,tapioca,salmon,lamb,barle y .....can actually be hurting dogs & cats.

Then she states "in the last few years I’ve seen more cases of nutritional deficiencies due to people feeding unconventional diets, such as unbalanced home-prepared diets, raw diets, vegetarian diets, and boutique commercial pet foods." That article really got me thinking!

I know there can be other causes, but wouldn't it be miraculous if we can answer the question "why is there a sudden rise in thyroid disease in cats, and cushings disease in dogs", or any of the diseases that seem to be on the rise and plaguing our fur babies , with the answer of diet? Maybe we have been foolish to rush out and spend extraordinary money for grain-free and exotic animal pet food just because dog food marketing has led us to believe we would be bad pet parents if we didn't.

Well, I'll get off my soap box now. I'm going to read more on the other articles devoted to diet and heart disease, and search for any on cushings. Emma has heart disease as well as cushings, and anything proven to help her is a blessing. I feel certain about one thing, though, we are going back to a kibble that is not grain free!
I will be back later to ask some questions of the community.
Sharon

'Unconditional love has fur, four paws and a grateful heart'
​

[Joan2517]

This is very interesting, Sharon. I had been feeding my dogs Wellness Original, grain free for years and only just switched to Science Diet W/D in the past few months.
Lena had Cushings and Gabe does along with Thyroid problems.

[Harley PoMMom]

I just wonder if she may be a bit bias since she is in the veterinarian field. Those overly priced dog foods sold at the vet's offices such as Royal Canine, Hills, most contain ground corn as their first ingredient so I imagine that they have been getting some flack about that...just a thought.

[labblab]

Unfortunately for me, since I’ve been feeding Luna a pea and lentil-based grainfree food for quite a while, the worries about the link with this particular heart problem seem to be legit :-((((. I just now Googled it, and apparently there were numerous articles released nationally last week that discussed the FDA study this vet is citing. Here’s a link to the FDA’s report itself:

https://www.fda.gov/NewsEvents/Newsroom/FDAInBrief/ucm613355.htm

In opposition to claims, I’ve never felt that a grainfree food was any more “natural” or inherently healthier for most dogs. Heck, who has seen a dog scavaging potatoes or lentils any more frequently than oats or barley. But I’ve been picking grainfree foods just because, based on reviews, I thought the manufacturer’s quality was better than average. But I believe many of these manufacturers also have lines of food that contain more traditional ingredients, and I now plan to start transitioning Luna over to something different.

At this point, it looks as though the concern is limited to this one specific type of heart disease. So we shouldn’t rush to conclude that the risk is heightened for a whole range of health problems. Plus, I’m always cautious about correlational observations — they don’t always prove that one thing actually causes another thing. For instance, pet owners who feed their dogs high-end “boutique” foods may also be more likely to be able to afford more regular vet visits, thus increasing the likelihood that an illness will be diagnosed in the first place. But obviously there’s enough concern here among vets to catch the FDA’s attention, and they do say some dogs improve once they are shifted off the grainfree food. Since I have no good reason to feed Luna a bunch of peas and lentils, I’m gonna switch to a more traditional formula, myself.

Sharon, I just wanted to add that this info underscores my personal reluctance to generally recommend any specific kind of food here on the forum. Every dog comes to us with its own specific health history and issues that may need to be addressed. And to date, I’ve not seen credible research that establishes that any one type of diet is specifically better for treatment of Cushing’s. So I think it’s especially great when folks can identify professional nutritionists who can help them design diets that are optimal for their dog’s specific needs. And you certainly can feel free to ask additional questions about nutrition here — I’m just afraid that, a lot of times, my own answer may be, “it all depends...”

Marianne

[Squirt's Mom]

Hi Sharon,

I studied canine nutrition for a couple of years before I realized the subject required much more than I could give, including years of life left to learn all of that stuff! :D But I did learn a lot during those years. The MOST important things I learned were these:

1) Each dog is a unique biological entity and should be honored as such.
This means that there is no one food or method of feeding that is right for all dogs. What my dog thrives on may well make yours very sick...because my dog and your dog are not the same. Even if they are both the same breed, gender, age, etc. they are not the same.

2) My dog has to be the guide I use to determine what is the right food and right way to feed my dog.
Not what others may say, not what the ASPCA says, not what the vet says, not what I see on TV or read on social media, etc. - nothing except my dog will be the right guide. If what my dog is currently eating has caused no problems and my dog is healthy, then there is absolutely no reason to change their diet.

3) If the diet does need to be changed, sticking with what we are both familiar with and comfortable with (kibble, canned, frozen, raw, etc.) is best.
The change needed may be a different protein for an allergic response or lower fat content for an illness but what ever the reason for the change sticking to what is already known is best if possible. There are times such as when the dog ages they need to switch to a soft food from kibble but usually that is not the case.

4) Feeding an ad hoc diet is worse than feeding the lowest quality commercial feed.
If a diet change is needed that cannot be best met thru a commercial food then I must hire a canine nutritional consultant who can design a diet specific to my dog and my dog's needs, including health issues, age, breed, environment, temperament, etc.

One of those consultants is Monica Segal. I have used her to design diets for three of my sick babies (I work with special needs and hospice babies in rescue). Monica has a Facebook group and one of the members on her group posted the study you mention above, asking Monica what her thoughts were on the topic. Below is her response:


Monica Segal
Admin · July 15 at 9:30 AM

TAURINE (this is long - sorry)

Taurine deficiency in dogs has been seen in raw fed, kibble fed and home-cooked fed dogs, and not accepting this fact is dangerous, so I want to try and be a part of the solution rather than divisive. I hope you’ll join me in this endeavour by Sharing this post because when all is said and done it’s the dogs that are at risk. IMHO this needs to be about the dogs’ realities rather than our preferred feeding methods.

You may have heard that raw fed dogs, especially those eating animal hearts can’t be deficient. I’m here to tell you that I’ve worked with dogs that were. Please read everything below.

Others say that kibble containing peas and lentils are causing the problem. That makes some sense, and the FDA has put out a warning. It comes a bit late since investigation started quite a while ago.

Peas and lentils add protein to the diet, so the amount of protein shown on the nutrition panel on a bag of kibble reflects it. This isn’t high quality protein though. So, when we see a meat source listed, there’s really no way to know how much of the protein is coming from that source, and how much from the peas, etc. That may be a bigger issue than in the past (when grains were being used) because these legumes have properties that lessen nutrient availability to the body.

Some say that diets with novel proteins/ingredients are the problem. Yet others say that the lack of grain in the kibble is causing a taurine deficiency, and the theories are getting bigger and louder by the week.

The body requires two amino acids (methionine and cysteine ) to make taurine. Meat based diets should have no problem meeting this requirement – on paper. In fact, diets that are loaded with peas, lentils, or whatever else should not be an issue if there’s enough methionine + lysine – but again, that's on paper. It’s not about rice being, or not being, in the diet.

In addition, a paper - Dietary beet pulp decreases taurine status
in dogs fed low protein diet - (Ko and Fascetti Journal of Animal Science and Technology (2016) 58:29 DOI 10.1186/s40781-016-0112-6)states " ..... BP may contribute to a decrease taurine status in dogs by increasing excretion of fecal BA and decreasing protein digestibility, thus decreasing the bioavailability of sulfur amino acids, the precursors of taurine.

This would suggest that a fresh food diet loaded with meats produces no problem whatsoever, but that’s not the case 100% of the time either.

It used to be that certain breeds were known to come down with dilated cardiomyopathy (DCM), but were they responsive to taurine? Not usually. There's a diffrence between the gentic issues with those dogs, an what's happening now. The dogs that are indeed responsive tosupplemental taurine should have never needed to become a medical emergency. None of us should be risking our dogs, and I know that some people are certain they’re not risking them because they’ve been feeding this way, or that way for 20 years, etc.
The bottom line is that unless we’re going to ask the vet to test taurine levels in all dogs, we shouldn't risk a death sentence when we can use a supplement proactivelt. It’s inexpensive, excess is secreted in urine. Do I think we should all be supplementing? YES! (unless your dog is going to be part of the taurine study being done by Dr. Joshua Stern in which case he wants you to not supplement until after the dog's blood has been drawn for testing)

I haven’t formulated a diet without additional taurine in at least 13 years, but I’ve corrected taurine responsive DCM for at least that many years, so while the latest worry about lentils etc. brings the issue back in a bigger way, the need for taurine supplementation isn’t new. That's not to say we should go overboard, but let's remain aware and vigilant on behalf of our dogs.

I also want to remind us all that to date there is NO known cause for canine Cushing's. There are NO studies proving any connection between diet and developing the disease. Anything else is simple speculation...or perhaps hope. When a cause, or causes, are finally found for this disease then CURING Cushing's will become that much closer. So I think many of us, including medical professionals and researchers, grasp at anything that seems remotely to blame. ;)

Thank you for opening up this discussion and allowing us expand on the topic so our members here are better educated on what this study could mean for them and their babies.
Hugs,
Leslie

[labblab]

Hey Les, thanks for sharing Monica’s response with us. Does she have a universal formula for taurine supplementation that would be easy to share, or does she individualize it for each dog?

Marianne

[Squirt's Mom]

Odds are there is a recommended dose based on weight but I will see if I can find out for sure and share here. She has always just told me how much to add for each pup. I never stopped to calculate. LOL I'm lazy! :D

[Squirt's Mom]

Here is the dosing she uses:

Based on a 500 mg capsule:

Up to 20 lbs: 1/4 capsule daily
21-50 lbs: 1/2 capsule daily
51-85 lbs: 1 capsule daily
86+ lbs: 2 capsules daily

So that would break down to:

Up to 20 lbs: 125mg daily
21-50 lbs: 250mg daily
51-85 lbs: 500mg daily
86+ lbs: 1000mg daily

[joalgopa]

In this era is sometimes hard to pick the right information in the vast sea of Internet, I always try to find reliable scientific information that supports what I read and also our own experience and the experiences of others is very important. I've seen long lived dogs that were fed with supermarket brands their entire life. In my case, I feed my older dog Clean with lamb and rice or fish and rice dry food (usually Sportmix or Propac) because he is allergic to chicken and beef and he is very active and healthy for an 11 years old dog, I swear he looks like 6 or 7. My younger dog Mia is the one with Cushing and I fed her with Kirkland chicken and rice dry food most of her life but she gained a lot of weight in the few months before her diagnosis, so I changed to the same food as Clean because it has less fat content.

Some things work for some dogs and not for others, we always have to look for signs to determine is something is healthy for them. I'm glad I've found this forum where we can share experiences and find reliable information to improve our dogs' quality of life.

[emmagirl]

I am so happy to see this topic discussed and hear others views. It isn’t really all about what this vet or that nutritionist wrote, but about how our animals are doing with the diets we feed them. Still, if something was reported with scientific proof, I would definitely be interested in that information. This topic is so important. Thank you for contributing.

Has anyone been giving their cushings pups probiotics? It makes so much sense to do that, but I am afraid to give Emma anything that might interfere with her disease or the Vetoryl that she’s taking for it.

[emmagirl]

K9cushings posts
7/31/18

About 3 to 4 weeks ago Emma started getting hungry before meal times. I was hoping it was just her way of testing me to see if she could get more food. Before the Trilostane her little whimpers and constant attempts at getting food had me so concerned that I was trying to think up ways to spend that last hour before she could eat. That last hour was the hardest. I would take her for a little walk, throw the ball, brush her, anything I could think of to get her mind off food.

After taking Vetoryl her symptoms disappeared and things went back to normal. She just waited for her meal without seeming so uncomfortable.
When she started acting like she couldn’t wait anymore, I thought maybe she wanted that extra attention again, but now I know it’s real hunger. But she doesn’t have the extreme thirst for water that went with the hunger. She seems the same in every other way except for the hunger.

Her last ACTH test was 1.3 pre and 3.2 post. That was on May 31. Her next test is August 30, her 3 month test. Is she showing signs again? Can cushings cause hunger but not additional need for water? Can she have another ACTH test before the 3 month mark?

Thanks for any insight someone can give me. Sharon

[Joan2517]

She can have the test done whenever you want it, Sharon.

[labblab]

Joan is right, Sharon, you can request to have a repeat ACTH done at any time. One other option that you might want to consider is to simply test Emma’s resting cortisol right before she’s due for her morning dose of the trilostane. The makers of Vetoryl have proposed a new cortisol testing protocol that may actually lead to better dosage and symptom management. Right now, the system is mainly being used in the UK and Europe. But it might be worth discussing with Emma’s vet as an option that is less stressful for Emma and less expensive than the standard ACTH. Here’s a link that better describes the new protocol:

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1252#post1252

Either way, it would be interesting to see whether Emma’s cortisol level may be accounting for the rebound in hunger. I know we’ve been discussing dietary info with you, but I’ve forgotten whether you’ve actually made any feeding changes recently. Any recent shifts in Emma’s food or treats that might account for her change in appetite? I know how stressful this must be for you, right after you thought you had things under control! And we’ve probably talked about it before, but does it help to give her some veggie treats when she’s most hungry — things like green beans or carrots slices?

Marianne

[emmagirl]

No, I haven’t changed her diet at all. Yes, sometimes I’ll give her a few apple slices that are cut up, or some carrot pieces. She eats them readily, but I can’t give them too often or her weight will shoot up. She needs to stay at 19 lbs or lower, but lower would mean calorie cut backs and I won’t do that with her present condition. It would be too hard on her. She’s been at 19lbs since shortly after being diagnosed.

So we see the vet Thursday, August 2, and we will talk about all of this, plus her congestive heart failure, which all of her previous vets have referred to as a murmur. The last vet finally brought it to my attention, indirectly, by switching her meds from Enalapril to Vetmedin. I read up on Vetmedin and realized it was CHF, not just a murmur. The vet rated the murmur a 5. 5! And no-one has spoken to me about CHF.

By the way, did you know that Dechra advises not to give dogs Enalapril when they are taking Vetoryl ? I’m thankful to the vet for that.
I’ll request Emma’s ACTH be moved up to soon as possible. Does anyone think it matters if the test is a SNAP cortisol or should it be ACTH stim sent to IDEXX for testing?

Thank you Marianne, and to everyone that contributes information for consideration in Emma’s care.

[emmagirl]

I forgot to mention that Emma has been waking at 6am for her first meal ever since this hunger started. She wakes at the same time every single day. (Then she eats at 12, then 6) How would I be able to get a resting cortisol test before her first dose of the day which is at 6am? The article:
New, “Pre-pill” Trilostane monitoring protocol (2018) Was very interesting, and I’m definitely interested. I still need to read the info at the links that were included in this report. Thanks very much. Sharon

[Joan2517]

Just change the time that she gets the pill the day before the test. Give her a little something at 6am the day before, give her the pill at 10ish with a full meal and have the test done at 10 the next day.

[Harley PoMMom]

I’ll request Emma’s ACTH be moved up to soon as possible. Does anyone think it matters if the test is a SNAP cortisol or should it be ACTH stim sent to IDEXX for testing?



Although one would expect that the results from either test would be similar, you just never know, so to able to compare "apples to apples" I'd stick to one or the other.

[emmagirl]

Thanks Joan, change the time she gets the pill..... that’s easy enough. Lori, since she’s been having tests run at IDEXX, I’ll request that if we can’t do the resting cortisol, which would be hard to compare also, correct?

I was incorrect in thinking Emma had congestive heart failure because she had a murmur. My vet explained that a murmur doesn’t mean congestive heart failure. She rated it lower also than the last vet: a 2 or 3, and said if I occasionally count her resting breathes per minute, we would know if the murmur was getting worse. That sounds logical and easy enough to do.

Thanks ladies. I would be lost without your input!

[emmagirl]

Diatomaceous Earth for Fleas

August 2018 - I first learned about Diatomaceous Earth while searching the internet for a natural way to keep fleas off my pup and decided to try it. The results were so good I wanted to get the word out to anyone that hasn’t heard of it yet.

DE is made from the fossilized remains of tiny, aquatic organisms called diatoms, which are made of a natural substance called silica. Over a long period of time, diatoms accumulated in the sediment of rivers, streams, lakes, and oceans. Today, silica deposits are mined from these areas.

There is no shortage of information on Diatomaceous Earth. A quick search will provide pages of results. I found a web site named diatomaceousearth.com and started there. DE powder looks and feels like silk, but microscopically has the ability to lacerate the exoskeletons of fleas, (ticks, ear mites & other tiny pests), and kills them through dehydration. (Cue sinister laugh)

You must use the Food Grade DE. That grade is safe for humans and animals. A five pound bag costs around $14 and will last for quite a while. It is widely available locally and online at home improvement, discount and pet stores, and online at those same stores and others.

After sprinkling it on my dachshund, it only takes one or two days before she is no longer biting and scratching from flea bites. I continue treating the hotspots she already had from previous flea bites until they are gone, and then amazingly, there aren’t any more to treat.

One full dusting lasts a week or two. If she scratches during that time, it’s usually because the powder itself causes dry skin and she is scratching an itchy dry spot. She doesn’t scratch much, and it has never caused a hot spot.

A flea comb will no longer go through her fur because of the powder, so I use a wide spaced comb for grooming. When the powder starts wearing off and fleas want to hop aboard again, I give her a bath and after a short break from the powder it’s time to reapply again.

If fleas are present in the house or yard, you can use the powder to rid the fleas in those areas also. Vacuuming and cleaning after applying in the house is a small challenge, and there are articles on the web that address that subject.

One of the suggestions on the site I implemented right away: after your dog makes its daily deposit in the yard, throw some of the powder on top of it. It keeps the flies away and in-between clean up times with the scooper, those white spots make a good visual warning not to step there!

I hope this helps some of our fur babies.

Sharon

[labblab]

Wow, Sharon, thank you so much for this super helpful info! I think it could help a lot of people — so much so that I’m going to make a copy of your reply and post it as a new thread-starter on our “Everything Else” forum. This way, in the future it will be easier for people to see the topic and talk about “flea issues” further.

I had to smile when I noticed elsewhere that you had written that you’re “just a member without special expertise,” because this just shows how valuable each and every one of our members is to our family. We each have our very own areas of expertise, and it is a gift to us all when that knowledge and experience can be shared :-)))). So thanks again, on behalf of all our itchy babies!!!

And here’s a link to your new thread, where we can all continue the conversation:

http://www.k9cushings.com/forum/showthread.php?9053-Flea-treatment-Diatomaceous-earth

Marianne

[Joan2517]

Thanks, Sharon! Sounds great! I'm taking Gabe to the vet anyway just to check him out, but I will definitely try your recipe!

[emmagirl]

That's great, Marianne, Hope it all makes sense. I tried to condense weeks of trial and error into one post and hope it makes sense. I hope it works for someone else...Ive had such positive results. I guess I forgot to mention, too, that Emma is not on any flea control; pills, spot-on, because it's poison.... bottom line. So that is why I am so thrilled that I found something that works, for me at least, to keep those things off Emma.
Also, I don't have cats anymore, both of my babies died this year, and cat fleas are worse than dog fleas, so I don't know how successful this might be with cat fleas in the mix. Maybe someone will let us know.

Anyway, thanks Marianne, for putting it on a thread to make it easier to find, and the pat on the back!

And Joan, I hope things work out well for Gabe at the vet today.

Sharon

[emmagirl]

Update: 11/22/18
Another product I tried and found success with is Wondercide Flea spray. The spray needs to actually come into contact with the fleas to kill them, but it also makes a very good way to deter fleas and ticks from jumping on your pet.

Since it needs to hit the flea directly to kill it, (and itÂ’s instant kill) itÂ’s best to do a number of sprays and ruffle the liquid into their fur, than to spray heavily all at once. I don’t like putting too much of anything on Emma all at once; it’s just MY feeling.


The first time I used it I expected quick results and I didnÂ’t like the smell. I tried it again and was more patient, and found the more I used it the the flea problem was getting less of a problem and after a week, there was hardly a flea on my pup.

If I saw her quickly and urgently bite or scratch in one place, I would look, find the flea and spray. The flea was immediately killed. The spray is a little expensive, around $25 for a 16 oz spray bottle, but one bottle would last me for months. I have a 19 LB dachshund, so itÂ’s a rather small area to cover than say, a German Shepherd, but the results and safety of the spray are worth it to me.

Wondercide products are chemical free and and Wondercide is adamant that their products are safe for your fur baby. My pup has been sprayed many times during the summer and shows no effects from it.

Now they offer a new fragrant, peppermint, that doesnÂ’t bother my pup or me in the least. It isn’t a strong Medical-type smell. Very light and pleasing scent.

They also have a concentrate to spray on your lawn which I found extremely effective......wondercide.com
I apologize for any strange characters in this post...either the site or my iPad is having a glitch.

[emmagirl]

I forgot to write my post elsewhere and copy it to the forum, so its my fault I lost the whole post. Since the message said I wasnt logged in correctly when I submitted, IÂ’m not foing to find an autov save, so here is a much shorter version.

Emma has had cushings since 12/2017. She is a miniature long haired dachshund, 18 lbs. Only been increased once from 10mg vetoryl to 15mg. She is terribly afraid of the ACTH test. The last one she had was awful for both of us. When they brought her to me to wait the hour in between, she was clinging to me, front paws curled under to hold onto me better. So when they came to get her for second round, it broke my heart and I paced.

For 6 months she shook violently each time we got in the car to ride somewhere. Now I’m seeing the signs of cushings again and she needs a test. The last time I was on this site I was reading about “resting” ACTH tests, and I would like to know if there is further information on that or any other tests not so hard on the dog. The vet told me she hated giving the tests, and that didn’t help my concern.

Can anyone give me some info on newer. Kinder tests?

Thanks so much,
emmagirl
Sharon Keepiing

[labblab]

Hi Sharon! Welcome back to you and little Emma. I’m surely sorry that you had problems trying to log in and post today, but it looks as though you finally got it straightened out. You’ll see that I’ve added your new post to your original thread about Emma, and for your own privacy I’ve removed your email address from your posting. Since this is a public forum that can be viewed by anyone around the world, I just thought you’d probably rather keep your email address private.

Now as to your question about monitoring testing, yes, there is an alternative to the ACTH that is being offered especially in the U.K. It involves simply taking a baseline cortisol reading right before the administration of the morning dose of Vetoryl. It is not as widely known in the U.S., and it appears as though the method is still being “tweaked” for optimal use. But given Emma’s extreme stress during vet visits, it might be a good option to be considered. If you click on this link and scroll down to the bottom of the second reply, you’ll find the heading: “Pre-Vetoryl Cortisol Monitoring.”

https://www.k9cushings.com/forum/showthread.php?9066-Cost-Savings-for-Owners-of-Cushingoid-Dogs

This is a link you can also pass on to your vet. Unfortunately, the U.S. offices of Dechra aren’t offering official technical support for this monitoring method since it has not yet cleared the FDA approval process for published Vetoryl literature here. However, I think your vet can learn enough from the U.K. link posted above. Anyway, I think it’s worth considering.

Once again, it’s great to see you girls back here once again!
Marianne

[Squirt's Mom]

The pre-Vetoryl test may not be optimal for Emma after all. It is not recommended for stressed dogs, dogs who are not well, or aggressive dogs as these things can impact the cortisol level naturally. So you want to talk to her vet about which test would be best for Emma since she does get so stressed at the vets. Sadly the ACTH is also impacted by stressed dogs. Will they let you take her in and out of the clinic between draws? That will sometimes help the pup calm down a bit. We even had one member whose vet came out to her car and did the draws because her baby got so very upset just walking in the door. Some things to think about. ;)

[emmagirl]

Thank you for the link Marianne! I searched everywhere for info on it and came away with nothing, once again proving how valuable this site is!

I will send my vet the link and talk to her about the possibility of using it. I haven't read it yet, but hopefully its a little easier for little dogs that dont have much room on their little legs for getting blood samples. I think it hurts me as much as Emma, since I cannot sit still once they take her "in the back" for the testing.

She has just gotten over the worst part of 2 different skin ailments that 3 vets could not identify. She had brown spots, more like crusty spots, the size of a pea, on her chest, and they were spreading around her neck. Then on the inside of both rear legs some sort of black strand-like stuff. Both of them could be lightly scratched off, but not completely. She was put on 2 different antibiotics, but I think what really helped was frequent bathing with Dechra's DermabenSs shampoo that is specifically for seborrhic skin conditions. Its also a follicular flushing shampoo. It started in November and gradually just got worse. I wish I had started the shampoo earlier. It didnt seem uncomfortable for her; she hardly ever scratched, but it was right after her bout with that when the cushings symptoms started. First I noticed the excessive water drinking and then came the constant hunger. it's a nightmare to see those symptoms again. Especially worrying about her going through the testing again. But hopefully we will be through all of the tough stuff soon.

Thank you again for your help and I hope I can post good news very soon.

BTW, do you know if most of the members use Trilostane compound or the brand Vetoryl? Just wondering. Take care and I'll be checking in soon.
Sharon

[emmagirl]

Hi Squirt's Mom, I cannot remember your name, so sorry for the tag!

I thought about her stress affecting the test also. Of course her vets said its minimal if results are affected at all, but with all the reading I do on it, it only makes sense it would! . After all, cortisol is a stress hormone! Yes, I found a vet that let me sit and wait for Emma, and take her out for an hour in between draws. The others said, No, drop her off at 7:30am and pick her up at 4pm. Yeah, right! like either one of us could handle that!

Thank you for replying, you guys are the best.
Sharon (Emma thanks all of you too!)

[emmagirl]

Hello again everyone. I'm happy to say that my vet agreed to the Pre-Vetoryl Cortisol Test, and she was very accommodating in letting me stay with Emma the whole time. They took her from the exam room to draw her blood, but she was back in 2 minutes. I was so relived that she didn't have to get 3 sticks for an ACTH test. We followed Dechra's instructions and moved her Vetoryl dosing time up a bit - instead of 6am she got the dose at 7am Saturday, 7:30am Sunday then none before her 8am test on Monday.

The results were good, unless the reference range for cortisol is different for this test compared to ACTH test. Her cortisol was 4. Ref Range is 2>6 is that right? do you know if its different from ACTH test? i looked all over and couldn't find the range for Pre-vetoryl testing. Thanks so much guys! And thank you for telling me all about the pre-vet testing. Emma thanks you too

Sharon

[labblab]

Hello Sharon, and welcome back to you and little Emma! I’m so glad the testing went more smoothly this time around :-))).

The published therapeutic cortisol range for the pre-pill testing is just slightly different than what you’ve listed. The pre-pill range is 1.45 - 5.0 ug/dL. But the very good news is that Emma is indeed within that range. An important question, though, is how is she doing clinically? If her symptoms were being well-controlled, the recommendation would be to stay on the same dose. However, you’ve mentioned that you’ve seen a rebound in her symptoms. If that’s still the case, then a dosing increase can be considered.

Here’s a link to the pre-pill monitoring chart that you’ve been looking for. The cortisol levels on the chart are reported in the units that are used in the U.K. where it was published. To convert the units to those here in the U.S., you divide the numbers that are given on the chart by 27.59.

https://www.dechra.co.uk/Admin/Public/Download.aspx?file=Files%2fFiles%2fSupportMaterial Downloads%2fuk%2fDVP1287.pdf

So once again, I’m so glad that the testing was easier this time around. And we’ll be anxious to hear more about how sweet Emma is doing. Thanks for checking back in with us!

Marianne

[emmagirl]

Hi Marianne, and thank you for your reply!
It seems the rebound symptoms that I observed were all on me. I thought her symptoms were coming back one other time, and it was the same thing. i think it starts with me doing something i dont normally do, like giving her something off my plate during dinner. That will trigger her to beg & whine the next few days to see if will do it again.

If I stand firm and dont give in she will usually forget about it in 1 or 2 days. But sometimes she keeps trying and I forget what started it in their first place and start to think it might be a “rebound” of cushings, maybe she is beyond hungry, and i start the cycle by giving her “a little more” canned dog food.

When she gets EXTREME with little whines and those big EYES staring at me I am convinced she is so hungry it hurts so i give in and before you know it she DOES have ravenous hunger. It just doesnt take much for her to forget that we ever HAD a schedule. So I have to be more careful not to mess up her training and cause this whole situation.

The one needle stick was so much easier on her. Im really lucky to finally have a vet that works with us, and also blessed with you and the other smart ladies on this site!

The excessive water i must have imagined also, because the vet asked me to measure it for a few days after the test and it turns out she is really not drinking enough. most days around 5 ounces.If we take a walk she will drink maybe 8 ounces. Ill be telling the results to the vet on Monday.

I read that dogs get water from their canned food and that is the largest percentage of her food. She gets very few dry kibbles with it. One day i added salt-free fat-free chicken broth to her water and she wouldnÂ’t stop drinking it! I picked it up after what seems like 2 ounces so she doesnt drink too much at once.

So i cant let myself jump to conclusions anymore about her cushings rebounding. In all other aspects she is A-ok. I would like to say all the happy signs i see every day but i don't want to jinx it. You know, like bragging you havenÂ’t had a speeding ticket in years and you get one the next day!

Thank you for the link today, and the links for the pre-Vetoryl testing helped my vet very much ☺️ Emmas cushings would have been so much harder without the valuable information I gained on this site. Keep up the important work you all do; so many fur babies and their moms/dads would be so lost and afraid without your guidance and caring.

All my thanks,

Sharon & Emma
3/1/2020

[labblab]

Oh Sharon, thanks so much for your very kind note and also for adding your new photo of sweet Emma to your album! What a cutie pie she is!

I’m so glad to hear that things are really going well for you girls. I surely do understand how easy it is to get tricked into worrying that something is going wrong. After they’ve been sick, we watch our babies so carefully that we tend to notice every little detail. I do the same thing with my own. But for the time being, we’re all grateful to hear that Emma is holding her own!

We’ll love to continue to hear back from you girls, just to know how things are going. Do take care, and give Emma a gentle hug from her family here on K9C :-).

Marianne

[tchapin50]

Welcome to you! I am also new and new to this Cushings thing. My boy, Jake, is 11 yrs old and he was diagnosed about a month or so ago.

[labblab]

Dear Sharon,

I was so touched this morning to receive this message from you. At your request, I’m publicly posting your note here, on your original thread about Emma. Your kind words to me and to our whole K9C family are so deeply appreciated. Thank you so very much.

We also want you to know how sorry we are for your loss. We are always here for you, Sharon. We can’t change your pain and your grief, but we’re surely here to walk alongside you. So please do feel free to return at any time to talk with us — to share special memories or just to tell us how you’re doing. Although we are so sorry about Emma, we are very grateful to have you back with us once again.


Hi Marianne, I would have posted in forum, but cannot remember out how to start a new thread. I haven't been here in a long time.

My fur baby Emma went to the Rainbow Bridge in January and I've been trying to post on this site since then, but wasn't able too. I live alone and Emma was like a child to me. None of her illnesses or injuries would dampen my spirits; I knew I could make anything better for her. Until her CHF took her quite suddenly. I was totally attached to her in every way, and the hole she left in me seems resistant to time ... but I was just reading about the K9C candles, and although i don't quite understand how it works perhaps you can direct me to a link. Actively honoring Emma's memory is exactly what I need to do.

As hard as it is, I wanted to come back here and tell all of the moderators how blessed I felt to have this site and all of you, in mine and Emma's life. I was able to control and even improve Emma's cushings with all the knowledge I gained at this site. Your are a shining star on a dark night and this site filled me with hope. Just like you do for so many others whose fur babies develop Cushings Disease & related illnesses. Emma was 16yrs old when she went to the Rainbow Bridge, and can I say the quote about good dogs being canine candles gave me a little of the comfort I have needed. It is a beautiful sentiment.

If you can give me more info on the candles, thank you. Thanks for being so devoted, Marianne. You and all the moderators that have helped me so much with Emma. She lived a very loved, a very happy life, with her mom by her side from beg to end.

If you can post this in the appropriate area I would appreciate it, Marianne. I want to thank all the other moderators too. You've all been wonderful friends and remain that way.

And now, here is some information that I hope will be helpful. First of all, we want you to know that Emma has been added to our special memorial thread of honor here on our “In Loving Memory” forum. If you would care to tell me the date of her passing, I will add that to her memorial line. Also, if you’d like me to add a link to one of the beautiful pictures that you’ve already posted to her album, just let me know and I’ll be happy to do so.

https://www.k9cushings.com/forum/showthread.php?9294-Remembering-All-Who-Have-Left-Us-(2020-2021)

Next, here’s a link to the post that gives you specific instructions about lighting a candle for Emma.

https://www.k9cushings.com/forum/showthread.php?517-Candles-in-honor-of-our-babies-at-The-Bridge

If you follow the instructions in that post, hopefully you won’t have any problems in reaching the candle-lighting site and preparing a candle for sweet Emma. If you do hit a snag, though, just let me know and I’ll be glad to help further. I’m going to light a candle for our family there right now, myself. It brings me a great deal of comfort every time I visit. I hope the same will be true for you, too. Good luck to you Sharon, and again, welcome back to us.

Marianne

[Joan2517]

Oh Sharon, I am so sorry about your little girl...they are our children and losing them is one of the hardest things that life throws at us. Many, many hugs to you.

[emmagirl]

Hi Marianne,
Emma left on January 19, 2021. Thank you. For updating that for me and yes I would like to have a link to her pictures or one of her pictures. Thanks for all your kind words Marianne, this place is always like home.

[emmagirl]

Oh thank you, Joan. If only we could give them the gift of time.
Sharon K.

[labblab]

OK, Sharon, Emma’s memorial line has now been updated along with a link to her photo in our corresponding memorial album. I’ve selected the same beautiful photo that you are using as your avatar (but if you’d prefer that we use an alternate picture, just let me know).

Sending you many hugs from across the miles,
Marianne

[Joan2517]

Oh thank you, Joan. If only we could give them the gift of time.
Sharon K.

Yes, if only...