bewildered and confused owner (6 y/o neutered Schiperke) - Blackie

[skifam]

Not sure how to post in this, lost my first post somewhere so hope this goes in correctly. Apologize in advance for length but noticed you all ask alot of questions so will try to answer them right away.
We have a 6 y/o neutered Schiperke named Blackie. We obtained him at 3 month old from what we suspect was a puppy mill operation as they were trying to breed momma dog already:mad:. Blackie had an undescended teste when neutered and the surgery was difficult as everything was tangled up inside him. From an early age he has had seizures - 2-3 a year average so elected to not treat due side effects of meds. He began "marking" in the house about 4 years ago - thought it was behavior-related or due to neutering problems. Was diagnosed with hypothyroid about 3 years ago - treated with soloxine 0.3 mg twice a day with normal labs for that now. Has also had periodic problems with a collapsing trachea - treated symptomatically with tussigon as needed. Besides the marking issue which is getting worse, he has other symptoms that may be cushings. 3 years ago they had to shave his neck for labs and the hair never grew back, coat is dry and thinning and getting worse. He is FAT and a food hound - at times is food aggressive toward other dogs. While we cut back on amount he gets, he still gets fatter while other dogs don't. He drinks more water than others but hard to quantify since there are other dogs. Very restless, especially at night. Up and down, panting and pacing - prefers to lay on tile floor and loves fan blowing on him. About 7 months ago his trachea flared up and when it did not resolve right away our new vet sent him to a specialist concerned he had cardiac issues. Turned out to just be the collapsing trachea but the specialist noted his liver was enlarged. She asked us about all the above things and suspected cushing. She gave us some options and told us to go home and look up more info on it and think about what we were able to. We have 8 dogs - most of which were ones others did not want, couldn't keep, or the owners were too elderly/ill to care for them any more. Most were headed to the pound when we got them. So, while we want Blackie to have good quality of life, unfortunately cost will be a consideration.

We have now decided tp pursue testing and last week he had an abnormal urine test - I do not know the numbers but will ask for them. He is scheduled for LDDS tomorrow - I will drive him in 3 times rather than leave him there (he hates vets) since vet is close by. I have tried to look up info on various cushing sites and have called a few area vets. Many local vets don't treat alot of cushings as many people elected to not treat due to the cost. The specialist also said many do not treat. The specialist office runs the ACTH test primarily and does it many times to monitor treatment. Other local vets tend to vary the frequency but use the ACTH primarily. Treatment varies vet to vet with Mitotane and trilostane being the most common. I recently spoke to one local vet that said he is currently treating 5 cushing dogs with trilostane and using the LDDS as follow up . He does not use ACTH unless the owner requests it. He states he bases this on reading current literature and that he has hasd success in all 5 dogs he is treating. I can not find this in my readings. My vet does not treat many cushing dogs but does prefer the LDDS for diagnosis. I have not discussed treatment options with her yet since the LDDS has not been done. In my readings I have noted many say that while trilostane is more costly than mitotane, follow up is cheaper which may make overall treatment cheaper- but it does not say why follow up is cheaper since they all seem to say that frequent ACTH testing is the follow-up preferred. While the LDDS testing makes sense I can not find anything showing effectiveness versus ACTH testing. Have any of you had follow-up monitored with LDDS? How avout mitotane versus trilostane? Any ideas/suggestoins/comments appreciated!

[Roxee's Dad]

Hi Skifam,
I wanted to welcome you and Blackie and ask you to check your e-mail and or spam folder for a confirming e-mail from k9cushings and follow the instructions to activate your account. Until your account is activated, your post will be delayed until and admin or moderator can approve your post.

In the meantime, many more members will be along to welcome you and help share our knowledge and experiences. Weekends can be kind of slow so hang in there. :)

[skifam]

I think it is activated but then again I am not familiar with doing this type of thing:confused: Also noticed I need spell check:) Thank you and will patiently wait for replies.

[Roxee's Dad]

I also wanted to add that there is a wealth of information in our Helpful Resources for Owners of Cushing's Dogs.

http://www.k9cushings.com/forum/forumdisplay.php?f=10

[littleone1]

Hi,

Corky and I want to welcome you and Blackie. You have found a wonderful group of very caring, supportive, and knowledgeable people. Many of our members have alot of experience with cushings and the treatments.

Corky only had one LDDS test in the very beginning when he was diagnosed with cushings. The first test that was done was the UC/CR. He then had the ACTH stim test and the LDDS test. An ultra sound was also done, which confirmed that Corky has adrenal cushings. The only test that has been used to monitor Corky since then has been the ACTH stim test. Corky is being treated with Trilostane, and has been doing well on it for 19 months. Corky's Trilo is compounded, and I just recently paid $90 for 180 capsules, which I personally don't feel is expensive, as this is a 3 months supply for him.

Please let us know the results of the tests that are done. This helps our members to offer you more information.

We're here to help in any way we can.

Terri

[Roxee's Dad]

Regarding your questions on ACTH... here is a good video on Trilostane dosing and monitoring via the ACTH test. I don't think I have ever heard of monitoring treatment via the LDDS testing.


Treatment varies vet to vet with Mitotane and trilostane being the most common. I recently spoke to one local vet that said he is currently treating 5 cushing dogs with trilostane and using the LDDS as follow up . He does not use ACTH unless the owner requests it.

Trilostane dosing, monitoring, switching from mitotane to trilostane (Bruyette video)

http://veterinarymedicine.dvm360.com/vetmed/Medicine/Trilostane-dosing-and-monitoring-recommendations-4/ArticleStandard/Article/detail/567360

As others will agree, it is very important to have a vet that is well experienced in the treatment of cushing's and also important as Blackie's only advocate that the caregiver understand the options, testing and monitoring procedures to ensure the best care for your dog.

[MBK]

Hi, I am realtively new here so I will let others respond to your questions, but I did want to welcome you. There are a lot of very knowledgeable and caring people here. You are obviously pretty special to have rescued 8 dogs and to provide the best care possible. Blackie is fortunate to have you.

Cushing's is a complicated and very confusing disease. Sometimes i feel like the more I learn, the more confused I am, so you definitely are not alone in that! :confused: The people here will help you sort through it all, though.

[addy]

Welcome from me and my Zoe.

This is truly an amazing place; if you have questions, ask away and everyone will try their best to answer them. Our Resource Section has so much information on all the tests and treatments for Cushings. As others have said, it is a good place to start. We all arrive here a bit shell shocked. The important thing to know is that you are not alone any more. We all take the Cushing journey together.

Hugs,
Addy

[Harley PoMMom]

The LDDS test and the ACTH stimulation test are very different.

The LDDS test suppresses the adrenal gland from producing cortisol while the ACTH test stimulates the adrenal gland.

The ACTH test is used primarily to monitor treatment and also for diagnostic.

The LDDS test is used for to help diagnose Cushing Disease in a dog and can be used to distinguish between PDH and/or ADH.

When monitoring treatment with either Lysodren or Trilostane one needs to know how much cortisol the dog's adrenal glands have in reserve. The only test that can show this is the ACTH stimulation test.

The LDDS test can create false positive results in a dog with a non-adrenal disease and since Blackie does have a collapsed trachea, if it were me, I would have an ACTH stimulation test done instead of a LDDS test.

Was a CBC/Chemistry blood panel done on Blackie recently? If so, could you post any abnormalities that were marked with the reference ranges.

The bulk of expense is used in the diagnostic phase with confirming the Cushing's. Both Lysodren and Vetoryl can be compounded, which is a lot cheaper.

Please know we are here for you and Blackie so ask all the questions you want and we will do our very best to answer them.

Here is a link that I hope will be useful Links to Cushings Websites (especially helpful for new members!). (http://www.k9cushings.com/forum/showthread.php?t=180)


Love and hugs,
Lori

[Squirt's Mom]

Hi Skifam,

Welcome to you and Blackie! :)

First, I want to say "Thank you" - for being one who did want these babies, for being one to take them into your home and heart, for being one to give them another chance surrounded by security and love, for all the sacrifices made on their behalf. You are one the rare Angels walking our planet.

The signs you have noted are certainly in keeping with a cush pup's behavior so you are wise to look into testing for Blackie.

As others have already said, the LDDS is typically used as a diagnostic tool while the ACTH is used for monitoring. We have seen some vets who use the ACTH for diagnosing but this is the first I recall hearing of the LDDS being used to monitor. However, we are always open to new developments in the Cushing's world so if the vet you spoke with wouldn't mind sharing we would love to know about the studies he has recently read where the LDDS is being used as a monitoring test. I happen to think your vet is on the right path with the LDDS. :)

As Lori said, the LDDS is a suppression test. What this means is that blood is drawn from the pup prior to any meds being given to establish a baseline on the level of cortisol normally flowing in the pup's system. Then a drug is injected who's job is to stop the pup's system from releasing cortisol - the production and release of cortisol is suppressed. Then the vet makes 2 more blood draws spaced over about 8 hours to see how well the system can correctly respond to the injected drug. In a Cushing's dog, it's system cannot correctly respond and in most cases the LDDS will show a loss of suppression on the last blood draw. In a normal pup the suppression will hold for the full 8 hours.

The ACTH is a stimulation test - which means it is just the opposite of the LDDS. Again, a baseline blood draw is taken. But the drug injected this time is supposed to make the system release all the cortisol it can - it is stimulated. Usually, about 2 hours after the drug is injected, another blood draw is made to see how much cortisol was in the system. Alison, one of our Administrators, compares the ACTH to squeezing a sponge. In a cush pup, that second draw is usually much higher than what is considered a normal range for the cortisol contained in the body. In a normal pup, the system simply does not have as much cortisol to "squeeze" out so that second draw will be within that normal range.

Cushing's is one of, if not THE, most difficult canine condition to correctly diagnose. For one thing, several other conditions mimic it - they share the same signs - like hypothyroidism, diabetes, liver and kidney problems to name a few. So it is critical to rule out the possibility of these other causes before starting treatment for Cushing's. For another, no one single test can diagnose or confirm Cushing's so it can be quite risky to start treatment based on one test result. My Squirt was diagnosed as having PDH (pituitary based Cushing's) based on five positive tests - LDDS, HDDS, ACTH, ultrasound, and UTK panel - but an ultrasound found a tumor on her spleen and once it was removed, her cortisol returned to normal and has remain in that range since (that was 9/08). So even with a whole host of positive tests, there can still be another reason for the elevated cortisol, which is the enemy in Cushing's.

I was lucky when she was diagnosed in that I could afford to do all the testing that we did. Today would be another story altogether. ;) Faced with needing to know what was happening to my baby I would definitely choose to include the abdominal ultrasound. This test saved my baby's life by finding that tumor. Not only would it have killed her when it ruptured, I would have started treating her with drugs she did not need.

It was news to me that there are places that offer financial help to pet parents so I will give you a link to some resources that may be able to help in that area. Many of us use Care Credit.

Financial resources
http://www.k9cushings.com/forum/showthread.php?t=212

The biggest expense is usually during the diagnostic phase but once treatment starts, the cost drops quite a bit. It does seem to me that Trilo requires a bit more testing and tweaking of dosage than Lyso but with either drug, the out of pocket expenses drop once you get the right treatment going. Our members can help with finding less expensive ways to get prescriptions filled for either treatment, too.

As you already know, we ask lots of questions :p so be sure to get copies of all his actual test results and post the results here, if you don't mind. That will go a long way in helping us to give you more meaningful feedback. It's also a good idea to have a file at home of things like that in case you ever have to take them to a different vet - you will have all their info in hand when you walk in the door. We love details, so don't worry about writing a book...you will find several of us do that just about every time we open our mouths. :o:D

I know this can all be overwhelming at first. But you need to know that you and Blackie are no longer alone with this. We will be with you every step of the way. Please ask questions and we will do our best to help you understand. We are here to learn together, to share with and to support each other.

I am glad you found us and look forward to learning more in the near future. Let us know how the day went with the LDDS!

Hugs,
Leslie and the gang

[skifam]

Blackie's urine showed the following results
Urine cortisol 21.0 nmol/L
Cortisol/Creat ratio 1.3 nmol/mm
Creatinine 15.9 mmol/L

He has had other lab work in Nov at the specialist but I do not remember what it was other than she told us the current chemistry and T4 were normal. Only abnormal was the enlarged portion of the liver that showed on the thoracic digital xrays (other than the trachea issue of course.)

Blackie was a little trooper for his LDDS yesterday - he only rolled his lips once and did not growl at the vet at all:) He trotted right in each time we went for the labs. He did have to have his legs shaved a bit - vein in first leg is not in correct anitomical place and difficult to access but other leg was great to use! So he now has more hairless areas that will probably stay bald:( Vet will be gone most of the rest of the week but she will try to access results via internet and email them to me. Then we will discuss treatment options.

Vets around us do not have a large amount of experience with cushings - we are in a small Wisconsin area sort of centrally located in the middle of no where. Vet that is working with 5 cushings now and uses LDDS is not my vet. Mine has not treated a cushings in her private practice but has had some in the vets office that she works at part time. In the past she has used mitotane but does not like it - she has had adverse side effects. She has 25+ years as a vet (opened own private practice about 5 years ago) and seems to be willing to discuss and learn from other vets and is willing to listen to us also - which I think is an important trait. It will be a learning experience for us all here and hopefully lead others to consider testing for this and/or treating for it.

Where do all you get your trilostane? My vet has not ordered trilostane before but when she looked it up with some of her suppliers she found it was cheaper to have it compounded. If the diagnosis comes back as cushings she is considering using a pharmacy out West called Roadrunner. Anyone familair with that one? Our local pharmacies don't compound this drug - in fact I have gotten some odd looks when I ask them about it:o

Hopefully later this week I will get more chances to look at some of the recommended sites you all have referred me to. This sure is a confusing disease - I am an RN and use to confusing medical things but this is just nuts to understand! Will also try to get a pic of Blackie on here - not to tech savvy but can read directions:)

[littleone1]

Hi,

I get Corky's compounded Trilostane from Diamondback Pharmacy in AZ. Their toll free number is 866-646-2223. If Blackie is confirmed as having cushings, and you know how many mg of Trilo he would need to take, you can give them a call and they can give you a price. Many of our members use them.

Terri

[skifam]

Well, we got word that Blackie's LDDS was neg. for Cushings. I don't have the numbers - will be seeing vet today to discuss what is next and will get them then. We will get some other labs done to see if there is anything abnormal that shows up. She said that the lab recommended retesting LDDS in 1-2 months. Depending on results of other labs we are considering getting abdominal ultrasound done - have to go out of area for that. thanks to all of you - info here is so good as well as the words of encouragement:D

[Squirt's Mom]

Hi,

Good to hear from you and what the vet had to say about the LDDS. Please do post the numbers when you get them, if you don't mind. That will help us help you later if needed plus you will have them recorded if you should ever need to look at them again. ;) I find I come back to Squirt's thread to remind myself of certain events, timing, etc - it's sorta like an interactive journal or, more modern, a blog. :)

We will be interested to hear what the next steps are the vet recommends and what she is thinking at this point. Even if it turns out that Blackie does not have Cushing's, and I so hope that is the case!, ya'll are family and always welcome here. Do keep in touch, 'k?

Hugs,
Leslie and the gang

[lulusmom]

I have not posted to your thread before so I'd like to offer a belated welcome to you and Blackie. I have just read your thread and would like to make a few observations, ask a few questions and maybe even answer one. Please see my comments in blue text below:


Blackie's urine showed the following results
Urine cortisol 21.0 nmol/L
Cortisol/Creat ratio 1.3 nmol/mm
Creatinine 15.9 mmol/L

You mentioned in a previous post that the only tests up until this point was an abnormal urine test. I don't know which lab did the above test but I don't ever recall any normal reference range for any lab being less than 5. Can you please check your paperwork and provide the normal reference range? If this is a normal ratio, then your vet could have pretty much ruled out cushing's and should have pursued another cause for the symptoms you are seeing.

He has had other lab work in Nov at the specialist but I do not remember what it was other than she told us the current chemistry and T4 were normal.

Can you please post the actual result of the T4? Was a complete thyroid panel done when Blackie was originally diagnosed with hypothyroidism?

Only abnormal was the enlarged portion of the liver that showed on the thoracic digital xrays (other than the trachea issue of course.)

When you say enlarged portion of the liver, do you mean there is only one part of the liver that is abnormal? Most dogs with cushing's have an over all enlarged heart due to the effects of the excess cortisol. Can you please obtain a copy of the most current blood chemistry and post the abnormal values here, including the reporting units and normal reference ranges?

Blackie was a little trooper for his LDDS yesterday - he only rolled his lips once and did not growl at the vet at all:) He trotted right in each time we went for the labs. He did have to have his legs shaved a bit - vein in first leg is not in correct anitomical place and difficult to access but other leg was great to use! So he now has more hairless areas that will probably stay bald:( Vet will be gone most of the rest of the week but she will try to access results via internet and email them to me. Then we will discuss treatment options.

Your most recent post indicated the LDDS is negative. As I mentioned above, the UC:CR appears to be normal and if it truly is, hyperadrenocorticism could have been ruled out. If that is the case, a negative LDDS most certainly should have been expected.

Vets around us do not have a large amount of experience with cushings - we are in a small Wisconsin area sort of centrally located in the middle of no where. Vet that is working with 5 cushings now and uses LDDS is not my vet. Mine has not treated a cushings in her private practice but has had some in the vets office that she works at part time. In the past she has used mitotane but does not like it - she has had adverse side effects. She has 25+ years as a vet (opened own private practice about 5 years ago) and seems to be willing to discuss and learn from other vets and is willing to listen to us also - which I think is an important trait. It will be a learning experience for us all here and hopefully lead others to consider testing for this and/or treating for it.

With respect to your vet's dislike for mitotane, there are a good number of general practitioners who feel the same way. This is usually due to their limited experience with the drug and inadequate instruction and follow up with the pet owner. If a vet doesn't scare the bejeebies out of you when s/he explains how the drug works and how important it is that you are vigilant in monitoring the dog for side effects, s/he has not done their job. I have two cushdogs, one weighs 4.5 lbs and the other 6.5 lbs. Both loaded on maximum dose of 50mg/kg and neither had any adverse effects during two loadings and two years of maintenance,. There are many success stories with mitotane.

I understand that it may not be possible for you to actually find a vet that is experienced with cushing's or its treatments but the good news is that you've made your way to the right place for learning and guidance. However, let's not put the horse before the cart and concentrate first on getting a confirmed diagnosis. Your most recent post indicates that the next step is an abdominal ultrasound. For what it's worth, I think that is a very good idea.

Where do all you get your trilostane? My vet has not ordered trilostane before but when she looked it up with some of her suppliers she found it was cheaper to have it compounded. If the diagnosis comes back as cushings she is considering using a pharmacy out West called Roadrunner. Anyone familair with that one? Our local pharmacies don't compound this drug - in fact I have gotten some odd looks when I ask them about it:o

My dogs are currently being treated with mitotane but they have both also treated previously with trilostane. I used to purchase their compounded trilostane from Diamondback Drugs in Scottsdale, AZ, who also compounds their mitotane. It's a great company and I've done business with them for several years.

Hopefully later this week I will get more chances to look at some of the recommended sites you all have referred me to. This sure is a confusing disease - I am an RN and use to confusing medical things but this is just nuts to understand! Will also try to get a pic of Blackie on here - not to tech savvy but can read directions:)

We've all been like a deer in headlights trying to wrap our heads around this disease and I can tell you with certainly that the light bulb will go on, maybe not today, tomorrow, next week or even next month but it will go on. When that happens, you will be a calm as a cucumber and the best advocate you can possibly be for Blackie. Until that happens we're here for you all the way.

I'll be looking forward to your responses.

Glynda