Hello from Jack's Mom

[JacksMom]

Hi all, My name is Dawn and I have two rat terriers, Jack and Henry. I lost a dog to cushings in 2008, she was my best friend. I still miss her very much. Now I am concerned that Jack has cushings. Well that's my basic story. I am glad to see by far I am not alone.

[Harley PoMMom]

Hi Dawn,

Welcome to you and Jack from me and my boy Harley! I am from York, PA. also! :)

I am so sorry for the loss of your girl and my heart goes out to you. The pain of loosing one's best friend is indeed heart-breaking and one can only hope that with time that the good memories over-shadow the tears. We do understand the pain you feel and we are here for you.

I was wondering if you could tell us more about Jack, you see, the more we know about your precious pup the better we can help you help your pup.

What symptoms is Jack displaying that leads you or the vet to think Jack has Cushing's?
Were any Cushing's tests done?
Was a CBC/Chemistry blood panel done and if so, could you post anything on there that is marked abnormal (H or L) with the reference ranges and the units of measurements (U/L, mg/dl).
Is Jack taking any herbs or supplements?
Does Jack have any other health problems?
Was diabetes and thyroid problems ruled out?

I am sorry for all these questions but like I mentioned, the more we know the better our feedback will be concerning Jack.

You are definitely not alone on this journey, we are here for you and Jack, so ask all the questions you want and we will answer them the best we can, ok? ;):D

Love and hugs,
Lori

[addy]

Hi Dawn,

I am so sorry to hear of your loss. The pain is so bad because the joy was so great.

You certainly are not alone because this forum is filled with wonderful, caring people willing to give you the support you need AND they sure do know about Cushings!

If you do have to travel that road again we are all here to travel it with you.

Addy

[JacksMom]

Hi Lori and Addy,

(Lori: Very cool that we both live in york. Maybe we can get together at the John Rudy dog park sometime.)

As for my Jack, this is what I am noticing:

He is super hungry all the time and is drinking and peeing a lot more as well. I checked his sugar a couple times at home and its always normal. The vet did check for other "old dog" illnesses, like thyroid, and that was negative. His personality has changed as well, he is very barky all the time and goes through the trash. He is reluctant to jump up on furniture or the bed. And, on some pre-op labs he had done before his eye surgery recently, the alk phos was in the 500's. The vet repeated the labs and also said some changes in the WBC's look suspicious for cushing's.

Jack is having his LDDS test today. We should know by thurs or friday. I am taking him to Shiloh in Manchester. They seem really on top of things and knowledgeable. Have you heard anything about them?

When Wicca was being treated, we lived in Baltimore. I took her to CVRC internal medicine. She was a very complicated case and required many hospitalizations. Dr Martinez was our vet there. She became like family. She even came to Wicca's burial and cried when she died. She loved her as much as I did. So I'm wondering whether I should go back there for Jack. Its such a long drive.

Jack recently had his eye removed. It was pretty traumatic for us. He did great though. He had been blind in that eye for sometime and kept injuring it. He did so good with the surgery and feels so much better now. It was way harder on me and my mom, its just not the same little face anymore. Very sad. So now that there is the threat of the cushing's, I am just too stressed.

Maybe I am being paranoid, because of everything that happened with Wicca. I am praying that he really doesn't have it. My gut says he does though. Wicca had severe diabetes with her cushings and often had seizures for out of control blood sugars. She was treated with trilostane and developed Addison's and then back to Cushing's and then back to Addison's. She had a severe case of hemmoraghic(sp?) gastritis once, that was extremely scary. And a million other complications too. So you can see why I am so stressed about Jack possibly having cushing's.

Besides all that, I am STILL paying off the debt I racked up during Wicca's treatment. And she passed over two years ago. So I am stressing about how I am going to afford this AGAIN.

I do have couple of questions. What do you all think about lysodren vs trilostane? What is up with getting trilostane from the vet now? I used to get it from the UK, they are saying they won't send it to the USA anymore. Is it possible that Jack will be a less complicated case since he doesn't have diabetes too?

I guess that's it for now. I'm sure I'll be on here a lot more and time goes on. Thanks for your understanding and advice.

Dawn

[addy]

Hi Dawn,

So sorry you have had so many problems. It is so very hard when our babies are ill.

I just posted a link to an interesting article from Dr. Feldman which you should read.

http://veterinarynews.dvm360.com/dvm/Medicine/Cushings-disease-and-other-adrenal-gland-disorders/ArticleStandard/Article/detail/672663

Trilostane is now available in the U.S. Whether Trilostane or Lysodren is the better treatment depends on what type of Cushings your dog has and if any other hormones come into play.

My Zoe was just diagnosed with Pituitary but four other hormones are elevated, one in particular rules her out of treatment with Trilostane.

The senior members will all be along soon asking tons of questions which is a very good thing. In the mean time read through the articles in the reference section.

I believe the best test is a dog's history and physical exam. If that suggests Cushings further testing can be done. No one test is perfect. We had the urine creatine test, an ultra sound, an ACTH test and full blood work and urinalysis. We also did the full adrenal panel to UTK. I did not do the low dose dex test as Zoe would have been too stressed for that and I feared skewed numbers. I also read the ACTH test may be more benefical in a dog not presenting excessive drinking and urinating. Zoe does not have that.

We have not started treatment with lyosdren yet. Cushings progresses slowly so it is best to cover all your bases and be sure of the diagnosis. Many diseases can mimic Cushings and skew test results.

We are here to support you in any way we can. There is a wealth of experience in this forum to draw from and did I mention everyone is really, really nice?:)

Addy

[Squirt's Mom]

Hi Dawn and welcome to you and Jack! :)

It has to be hard not to look at Jack and see Wicca, but remind yourself as often as need be that Jack is his own little self, no one has been or will be like him again. Even tho you may be seeing things that are familiar, that does not mean he will face the same trials that your sweet Wicca did. Yes, diabetes and Cushing's combined can complicate things more than Cushing's alone but those pups can and do cope with both. It's the moms and dads that go bonkers! :p

The biggest point in Jack's favor is YOU! It is obvious that you are a great mom who will go to great lengths for your babies...and a devoted parent is most important in treating Cushing's. Learn all you can about the condition, ask questions, read-read-read and ask more questions.

We are here to help you any time in any way we can. If we don't know the answer to your question, we will research it together, learning together. You and Jack are not alone on this journey; we will be with you every step of the way. The collective experiences, knowledge and unbelievable support found here is absolutely amazing...and it is all yours for the asking. You and Jack are family now so never hesitate to reach out.

Keep your chin up!
Hugs,
Leslie and the girls - always

[jrepac]

Hi Dawn,

So sorry you have had so many problems. It is so very hard when our babies are ill.

I just posted a link to an interesting article from Dr. Feldman which you should read.

http://veterinarynews.dvm360.com/dvm/Medicine/Cushings-disease-and-other-adrenal-gland-disorders/ArticleStandard/Article/detail/672663

Trilostane is now available in the U.S. Whether Trilostane or Lysodren is the better treatment depends on what type of Cushings your dog has and if any other hormones come into play.

My Zoe was just diagnosed with Pituitary but four other hormones are elevated, one in particular rules her out of treatment with Trilostane.

The senior members will all be along soon asking tons of questions which is a very good thing. In the mean time read through the articles in the reference section.

I believe the best test is a dog's history and physical exam. If that suggests Cushings further testing can be done. No one test is perfect. We had the urine creatine test, an ultra sound, an ACTH test and full blood work and urinalysis. We also did the full adrenal panel to UTK. I did not do the low dose dex test as Zoe would have been too stressed for that and I feared skewed numbers. I also read the ACTH test may be more benefical in a dog not presenting excessive drinking and urinating. Zoe does not have that.

We have not started treatment with lyosdren yet. Cushings progresses slowly so it is best to cover all your bases and be sure of the diagnosis. Many diseases can mimic Cushings and skew test results.

We are here to support you in any way we can. There is a wealth of experience in this forum to draw from and did I mention everyone is really, really nice?:)

Addy

Yes, Trilostane is available here in the US now...brand name is Vetoryl. Not sure why this Dr. is so "down" on the ACTH test...it is better than the LDDS in many ways (less likely to give false positive). But, does sound like your Jack is exhibiting Cushings symptoms. If you have already had a Cushpup you know what they are and will be overly sensitive to them (as was I, seeing Cushings present/coming on months before the formal diagnosis)

[Harley PoMMom]

Hi Lori and Addy,

(Lori: Very cool that we both live in york. Maybe we can get together at the John Rudy dog park sometime.) I would love to get together with you!


As for my Jack, this is what I am noticing:

He is super hungry all the time and is drinking and peeing a lot more as well. I checked his sugar a couple times at home and its always normal. The vet did check for other "old dog" illnesses, like thyroid, and that was negative. His personality has changed as well, he is very barky all the time and goes through the trash. He is reluctant to jump up on furniture or the bed. And, on some pre-op labs he had done before his eye surgery recently, the alk phos was in the 500's. The vet repeated the labs and also said some changes in the WBC's look suspicious for cushing's. The increased drinking and thirst are the usual symptoms for our cush-pups; the excessive cortisol makes the kidneys work harder and thus our pups have to drink more to keep up with the increased urination. Elevated alk phos is also common with our cush-pups, is Jack's cholesterol elevated too?


Jack is having his LDDS test today. We should know by thurs or friday. I am taking him to Shiloh in Manchester. They seem really on top of things and knowledgeable. Have you heard anything about them?

When Wicca was being treated, we lived in Baltimore. I took her to CVRC internal medicine. She was a very complicated case and required many hospitalizations. Dr Martinez was our vet there. She became like family. She even came to Wicca's burial and cried when she died. She loved her as much as I did. So I'm wondering whether I should go back there for Jack. Its such a long drive.I take my boy Harley to Shiloh Vet Hospital in Manchester too! Which GP are you and Jack seeing there?

On June 18 I had Harley at the CVRC to see Dr Petrus.



I do have couple of questions. What do you all think about lysodren vs trilostane? What is up with getting trilostane from the vet now? I used to get it from the UK, they are saying they won't send it to the USA anymore. Is it possible that Jack will be a less complicated case since he doesn't have diabetes too?

I guess that's it for now. I'm sure I'll be on here a lot more and time goes on. Thanks for your understanding and advice.

Dawn

Both lysodren and trilostane, I believe, are the life-saving drugs for our cush-pups. They do work differently, and whichever one you choose I am sure you will make the best choice. One question you might want to ask the vet/IMS is, which one they feel more comfortable treating with...lysodren or trilostane. Just remember we are here for you, always.

Love and hugs,
Lori

[JacksMom]

Wow, you guys are a great wealth of information! Thank you so much for your posts!

Jack is seeing Dr Schneider at Shiloh. So far he seems pretty cool. He spent awhile just nuzzling Jack and giving him hugs. I don't know if I should think this is good or a little bit weird. The staff said one of the vets there is a big Rat Terrier fan. Maybe he just loves them a lot.

Okay, so a few more questions :D

1. Dr Schneider says he usually recommends trilostane. He says he gets it from a compounding pharmacy. Do you think its okay to do that or should we just use the premade vetoryl? I have heard that it might not be as good compounded, but I used to get it in the modrenal form and have it compounded for Wicca and I had no problems.

2. What else might Jack have going on if its not cushing's? We ruled out diabetes and thyroid. What other things are similar?

3. What is trilostane going for these days? How does lysodren compare price wise? Do you all get your drugs from the vet or do you order from online pharmacies or something else?

Well I guess that's it for now. I read the article, it definitely is interesting to hear what a real vet thinks, unedited to protect his interests. I feel like this new vet that I'm taking Jack to wasn't giving up everything he was thinking. Bu we just met him, so we'll see.

Thanks again for the great advice!! :)

Lori: I haven't been taking the dogs (I have another, Henry) to John Rudy lately because of the heat. Hopefully we'll get a reprieve soon and we'll be able to go again. I am a nurse and work all nights. My schedule is a little wacky. If I plan on going anytime soon, I'll let you know and you can let me know if you plan too. Hopefully we can get together soon. Its so wonderful that we live so close to each other and use the same vet.


Okay guys, I think I've rambled way too much for now. Thanks again!

[marie adams]

Hi Dawn,

Welcome to you and Jack!!:)

I was new to this wonderful disease in February so I am not yet a wealth of information. I can tell you I get Maddie's Lyso from Costco and being a member gives me a little discount from the pricing at Walmart--these were the 2 cheapest I found without going online--needed the meds asap when we first started and didn't know a lot about much of this until I found this site. They are the BEST!!!:D:D

I do not have to compound so that wasn't something I had to deal with. I just cut one pill in half for one of the doses--I just try not to touch the stuff.

Good luck with everything and keep cool!!!!:D:D The weather here in So Cal is just being very weird--it is 7:30am and misting at the beach or should I say coastal area. We were having a heat wave last week....:confused:

[littleone1]

Hi Dawn,

Corky and I also want to welcome you and Jack.

This is a wonderful group of very, caring, supportive and knowledgeable people. I know you have gotten alot of information.

Corky is taking compounded Trilo and has been taking it for a little over 9 months. I haven't had any problems with it. I know that there are others that don't like the compounded form, but when our Cushpups have to take different amounts, compounding is really a benefit.

I'm hoping that everything goes well with Jack.

Terri

[Squirt's Mom]

Hi Dawn,

I would recommend an abdominal ultrasound for Jack. This test saved my Squirt's life. A splenic tumor was discovered and when it was removed, her cortisol returned to normal. Her case is one that supports the idea of taking it slow and doing all you can to be absolutely sure you are dealing with Cushing's and not a non-adrenal illness causing the elevation in cortisol. Her testing revealed that she has Atypical Cushing's but not true Cushing's, which has affected her treatment protocol.

You are doing a great job! Keep your chin up, sweetie!
Hugs,
Leslie and the girls - always

[JacksMom]

Thank you Terri and Leslie,

I am glad that someone uses compounded trilostane without problems. I am sure the vet would only recommend this if he has not had any problems with it for his patients.

Wow, I would have never thought about the abd ultrasound to look for other causes. I will definitely consider having this done.

I should be getting Jack's LDDS results tomorrow or friday. I will let you all know the results when I get them.

Dawn

[JacksMom]

Jack's LDDS test results were perfectly normal said the vet. His 8 hour level was 0.7, he didn't tell me what the others were.

So if its not cushing's, what could it be. He has a lot of the symptoms, but ...

I was praying it wouldn't be cushing's. But now that it's not, I don't know what to think.

Totally confused!?!

~Dawn

[frijole]

Dawn, A couple thoughts....

First off, the test could be off - if she has any other illness going on so am checking on that.

Have you had an acth test done? Not telling you to do one, just wondering.

You ruled out diabetes, thyroid so I would be looking into ATYPICAL CUSHINGS. Test is done at the Univ of Tenn Knoxville by Dr Oliver. Here is some info:

http://www.k9cushings.com/forum/showthread.php?t=198

http://www.k9cushings.com/forum/showthread.php?t=215

Hope this is helpful. Kim

[JacksMom]

Thanks Kim. I haven't had a ACTH done yet. From what I remember from my last cushing's dog, the LDDS was more diagnostic and the ACTH was more for follow-up, checking levels and response to meds, etc. Maybe I got it wrong. Right now I feel like I am not remembering all this stuff right.

My Jack sure does seem to me that he has it but the vet is no longer concerned since the LDDS was "normal". I don't want to rush into to treating something that may not need treatment, but on the other hand if he does have something I want to treat it as soon as possible to minimize other complications.

I, honestly have never heard of atypical cushing's before. From what I've read, it seems that they present with cushing's symptoms but it could be from a source other than the adrenal glands? Am I understanding it right? So it would make sense that his adrenals DID suppress with the LDD if the increased cortisol is from somewhere else. I think I understand it. How do you find out if this is it. This test that goes to texas, how does it rule it in or out. Do you treat it the same as cushing's. Would an abd ultrasound be helpful. That would seem a tumor right?

Well that's enough to get my head spinning again.

Lori- Does Harley have atypical cushing's, I think you said that although I may be way off. If that's what he has and we go to the same vet, shouldn't he have thought of that when the first test was normal?

How much is this texas test? Anybody know how much an abd ultrasound is going for these days?

Thanks again for all the great advice and support. You guys are wonderful. I really look forward to getting to know you and your babies better.

Thanks,
Dawn

[Harley PoMMom]

Lori- Does Harley have atypical cushing's, I think you said that although I may be way off. If that's what he has and we go to the same vet, shouldn't he have thought of that when the first test was normal?

Thanks,
Dawn

Harley has been a bugger to diagnose! I did have the full adrenal panel test from the University of Tennessee done on Harley, twice actually. The first done early in his diagnostic phase. His vet, Dr Owings at Shiloh, never heard of Atypical Cushings either. She was willing to learn about this type of Cushing's and even called Dr Oliver to make certain they were doing the test correct and to find out more about Atypical Cushing's. Dr Oliver heads the lab at the University of Tennessee where the blood samples are sent.

Harley's first UTK full adrenal panel results showed that only his estradiol was highly elevated at post, his cortisol was normal. This is known as Hyperestrinism. The estradiol can definitely be secreted by adrenal tissues and primary adrenal tumors, but also is formed in other places, like fat cells, hair follicles and the liver.

Harley had the usual Cushing's symptoms at that time; excessive urination/drinking, ravenous appetite, pendulous belly, panting, thinning hair. His CBC/Chemistry blood panel showed elevated ALP, ALT and cholesterol...the norm for a dog that has Cushing's.

Shiloh charged me $235.00 in Nov. 09 to have his second full adrenal panel test done. This second test showed elevations in all intermediate/sex hormones and his cortisol.

If you are considering an ultrasound it has to be done on an optimal machine and read by a qualified person...Shiloh has neither.

Here is a link that has alot of information about Atypical Cushing's from our Resource Thread:

Congenital adrenal hyperplasia-like syndrome/ Hyperestrinism/ "atypical Cushing's" http://www.k9cushings.com/forum/showthread.php?t=198

Hope this helps.

Love and hugs,
Lori

[lulusmom]

Hi Dawn,

Typical cushing's occurs when the adrenal glands are producing too much cortisol. Atypical cushing's occurs when the adrenal glands produce too much of one or more of the other adrenal hormones. These other hormones can cause identical symptoms and many of bloodwork abnormalities you would see with typical cushing's.

In order to determine if Jack has atypical cushing's, your vet would need to send a blood sample to the University of Tennessee Knoxville (UTK). To my knowledge they are the only facility in the U.S. that does a full adrenal panel. A lot of us members have had this done for our own dogs. If you will kindly go back to Kim's last post and use the links she has provided, you can learn more about atypical cushing's. You can also find the contact information for UTK which you can provide your vet. Your vet can call UTK to get further information on atypical cushing's as well as instructions on how to do the draw and ship the sample to them. I know that cost is an issue for most of us and if your vet will ship the sample directly to UTK, you can save the cost of your vet's laboratory who merely acts as a middleman. The prices are on UTK website so to get the total cost you would have to add whatever your vet will charge to do the draw and ship.

I would hold off on the abdominal ultrasound until after you get the results of the UTK panel. If Jack's other adrenal hormones are elevated, they will usually recommend that an abdominal ultrasound be done anyway. Just like everything else in this world, the cost can vary depending on where you go. If memory serves me correctly, which is rare, I've heard anywhere from $350 to $400.

I hope this helps.

Glynda

P.S. I see that Lori posted while I was typing...very, very slowly...so please excuse any duplication.

[frijole]

Dawn - You have been given great advice by two seasoned cush moms. I agree that the full panel from the Univ of Tenn in Knoxville is what I would do next. Be sure that your vet sends the test directly to the Univ and NOT to another lab. That lab would simply forward it on and mark up the cost to you. Kim

[JacksMom]

Thanks Guys. I think I understand it now. It sure does get confusing.

I definitely will plan on having the UTK panel done. I will also call my old IMS vet, Dr. Martinez, at CVRC, and see if she could get us in for an ultrasound sometime. I tried to run all this by her too (she treated my Wicca for five years) but she must have been away.

Anyway, I will keep you all posted. Thanks again for all the great advice and info.

Dawn, and the boys.

[frijole]

Dawn, Leslie shared how her dog's ultrasound saved her from unnecessary treatment. I have had 2 dogs dx-ed with cushings. The first we treated for 4 yrs. My other dog we started treatment but it wasn't working and she quit eating. After a billion tests I took her to a specialist at Kansas State and they determined she had a nasty bacteria in her stomach. They believe it could have affected all the tests and are not sure she even has cushings. I am to wait 30 days to test.

If you do the ultrasound make sure it is on a high resolution machine and that the operator is a specialist in reading them.

Hang in there - I know it can warp the brain reading all of this. ;):p Kim

[JacksMom]

Wow Kim, that's amazing. I guess you just never know what can happen. I am going to keep pursuing a dx for Jack, but I am going to go about it very cautiously. I have a message in to my old IMS vet. She is very knowledgeable about cushings and such. Hopefully she will be able to shed some light on Jack's problems. I'll keep everyone updated.

[frijole]

Wow Kim, that's amazing. I guess you just never know what can happen. I am going to keep pursuing a dx for Jack, but I am going to go about it very cautiously. I have a message in to my old IMS vet. She is very knowledgeable about cushings and such. Hopefully she will be able to shed some light on Jack's problems. I'll keep everyone updated.

Excellent idea! Better safe than sorry. It is better to be cautious and safe. Any questions, just let us know. We're here to help. Kim

[Harley PoMMom]

Jack's LDDS test results were perfectly normal said the vet. His 8 hour level was 0.7, he didn't tell me what the others were.

So if its not cushing's, what could it be. He has a lot of the symptoms, but ...

I was praying it wouldn't be cushing's. But now that it's not, I don't know what to think.

Totally confused!?!

~Dawn

According to Dr Bruyette, who is a nationally known veterinary endocrinologist and the medical director of VCA West Los Angeles Animal Hospital.


When interpreting LDDS test results, first evaluate the eight-hour postdexamethasone administration cortisol concentration. If it is above the reference range, the dog probably has hyperadrenocorticism (false positive results may occur in dogs with nonadrenal illness). If it is within the reference range, either the dog does not have hyperadrenocorticism or there is a 5% to 10% chance that the dog has PDH. (The dog may have early pituitary disease and the pituitary gland is still responding to a pharmacologic dose of dexamethasone by decreasing ACTH production, thereby reducing serum cortisol concentrations.) In those cases, an ACTH stimulation test is warranted.

This quote comes from this particular article: ClinQuiz: Interpreting low-dose dexamethasone suppression test results
Test your knowledge of what these LDDS test results mean with this short quiz. The answers, with complete explanations, are provided.
By: David S. Bruyette, DVM, DACVIM
VETERINARY MEDICINE, Feb 1, 2009

And can found in our Resource Thread at this link: http://www.k9cushings.com/forum/showthread.php?t=227


Love and hugs,
Lori

[Harley PoMMom]

Hi Dawn,

Just wondering how you and Jack are doing! When you get time, drop us a line or two!!

Love and hugs,
Lori