Just found out my baby has Cushings...I'm devasted!

[ScootersMom]

Hello everyone. This is my first time here. I found out a little over 2 weeks ago that my baby has Pituitary Dependent Cushings. I am devasted & at a loss of what to do. My baby is a Yorkie. His name is Scooter. He will be 14 years old in November. He's not showing any symptoms of Cushings but he has been at the vet several times over the past two months and his liver enzymes (ALK Phosphatase) have come back extremely high (1200 range) so the vet wanted him to have the Cushing's test done to confirm. So, that's what we did, and it was confirmed. Now he wants to start him on Trilostane & this just scares me to death because of the side effects. I've read success stories from owners who have dogs on Trilostane but then I've read the horror stories too. The vet basically told me it was up to me and that if I wanted to wait until he started showing symptoms then he was okay with that. But if I wait until the symptoms are there wouldn't that mean that the disease is further progressed & more complicated to treat? But if I do treat him now, what about the side effects? I don't want my currently happy, playful dog to turn lethargic, no appetite, vomiting...etc. And besides from that, my husband is out of work & our bills are piling up (a lot of folks in this boat) & we won't have the money to afford the medication (but if that what he needs, I will find a way). And then there's the fact that he is TERRIFIED of going to the vet & has panic attacks every time. With him on this medication, he would have to go frequently to be monitored. I'm so upset. This is my baby. He's my life. I start crying (actually crying now) thinking about what the future holds for my baby. He'll soon be 14 & I know the end of his life is nearing. I don't think I'm going to be able to handle that. Oh, and one very important thing I forgot to mention about Scooter is that he is an amputee. He lost his hind right leg to cancer 5 years ago. He has done wonderful but I have noticed the last couple of months that his one & only back leg is giving out on him. He doesn't have the support of two back legs so now I'm worried about that. I'm trying to reseach and find ways I can help him strengthen his leg muscles other than walking. Any suggestions on exercises? Oh, I could go on & on about my baby. I love my dog so much. I need help trying to decide what to do as far as the treatment for his cushings. Has anyone ever heard or tried Supraglan (www.petwellbeing.com)?! Any advice & encouragement is welcomed. Thank you! Rebecca

[frijole]

I'm going to make your day. Stop crying! This is not a death sentence. Not even close. My dog Haley was treated for 4 1/2 yrs and died of old age at 16 1/2!!

First off - you don't treat a dog without symptoms. Period. So don't let any vet tell you to start any drug until we learn more about what is going on ok? :D;)

I have to go back to work so please give us your whole story including test results, dates etc. I'll check in later..... no doubt others will too.

I just wanted you to know you don't need to cry. ok? Kim

[Squirt's Mom]

Hi Rebecca and welcome to you and Scooter! :)

Kim is absolutely correct - this is not a death knell ringing. Cushing's babies can, and DO, live out their normal life span with treatment. Cushing's means a change in your life and that's all. Yes, the testing phase can be expensive but once that is past, the cost drops dramatically.

Trilostane can be a bit more expensive to use as it usually required more testing to get the dose right but it, and Lysodren, are life saving drugs for our cush pups.

If Scooter isn't showing any signs then treatment is not recommended yet. The most common signs are excess thirst, excess peeing, appetite out of control, pot belly appearance, frequent infections, loss of muscle mass in the hind legs, hair loss or hair that doesn't regrow after a shave, and panting for no reason. Some pups will withdraw from family and loved ones, preferring to be alone. The signs are critical for diagnosis but especially during treatment. The way we know the drugs are working is by observing the signs plus the ACTH test. The signs are just as important as the numbers. ;)

I know how you feel. When my Squirt was first diagnosed in March of '08 I thought the world was ending. I cried for weeks on end, feeling so helpless and hopeless. I was terrified, angry, guilt ridden, frustrated and confused to the max by the time I got here. But these kind loving folks took me in and began to teach me what I needed to know in order to help my Sweet Bebe. Today, if I got to choose an illness for one of my babies to have, Cushing's would be at the top of that list! ;) The more I learned, the less fear I had, the more confident I became.

They say knowledge is power and that is never truer than when dealing with Cushing's. And we are here to help you in that area for sure! Please ask any questions you may have and we will do our best to help you understand. Read, read, read - then ask more questions. There is no such thing as a dumb question - I should know! :p:D

If you could get copies of all the tests Scooter has had to make the diagnosis and post the actual results here for us, that would be great. Those results will allow us to offer more meaningful feedback. ;) Please include the units of measurement (ug/dl, nmol/l, etc) and the normal ranges that follow each value. Different labs use different measurements and norms.

I am glad you found us and look forward to learning more as time goes by. The most important thing I have to tell you today is this - you and Scooter are not alone on this journey. We will be with you every step of the way.

Hugs,
Leslie and the gang

[ScootersMom]

Ahhh. I just typed a long response but I guess it took me too long so it didn't post & now I have to re-type. I will try to shorten.

Scooter's bloodpanel on 5/5/24/11 - these are the numbers that were high:

ALT (SGPT) - 148 U/L (ref range 12-118)
ALK Phosphatase (ALKP) - 1261 U/L (ref range 5-131)
BUN/Creatinine Ratio - 40 Ratio (ref range 4-27)
Monocytes - 972 (ref range 0-840)

Scooter had just had a cortisone shot 5 days prior so vet said that could be why his ALKP number was high.

8/25/11 had another blood panel done & these were the numbers that were high:

ALKP - 1138 U/L
ALT - 119 U/L
CHOL - 388 mg/dL(range 110-320)
K - 6.3 mmol/L (range 3.5-5.8)
PLT - 591 x10(has a little "9" after the 10...couldn't figure out how to type it LOL)/L (range 175-500)

Of course the ALKP was the most alarming & vet recommended we do the Cushings Test which we did. These are the results from his Cushing's test on 9/6/11:

CORTISOL SERIAL 3 (DEX):
Time 1 - 8:25
Time 2 - 12:25
Time 3 - 4:25
1900 - 8.0 ug/dL
1902 - 0.9 ug/dL
1903 - 3.5 ug/dL

I'm assuming that the 8.0 is the result of the 8:25 time; 0.9 result of 12:25 time; & 3.5 result of 4:25 time????

INTERPRETATION OF THE DEX SUPPRESSION TEST:

Low-dose dexamethasone suppression test: Normal: Cortisol level less than 1.4 ug/dl 8 hrs post-dex.
Hyperadrenocorticism: cortisol level greater than 1/4 ug/dl 8 hrs post-dex.

If 8hr post dex. cortisol level is greater than 1/4 ug/dl, the following can be used to differentiate pituitary dependent hyperadrenocorticism (PDH) from adrenal tumor:
1. Cortisol level less than 1.4 ug/dl 4 hrs post-dex is consistent with PDH.
2. cortisol level less than half the baseline level at either 4 or 8 hrs post-dex is consistent with PDH.

Scooter gets VERY, VERY stressed going to the vet. He has panic attacks & it takes him a long time to calm down. Could stress cause the numbers to be higher than normal?

He doesn't really show any major symptoms. He pants from time to time but that is typically after he's been laying right beside me napping or on my lap napping. Doesn't take him long to cool down once he gets on the floor. His hair is still pretty, no bad skin, no pot belly, his appetite is normal (eats once in the morning & once in the evening); he goes the entire night without having to go out to pee-pee.

I have noticed that his back leg has been giving out on him but I assumed that's because he has only 1 back leg (lost his right hind leg to cancer 5 years ago) & because of his age. He's hesitant to jump up on "his" chair so I help him & I got him some pet stairs (which he doesn't like to use).

That's it in a nutshell. I'm seriously considering getting a 2nd opinion but I don't know if it's necessary or not. I don't want to put him on Trilostane if he doesn't need it but I just don't know. I'm a mess! Is there anything else I can give him? I found Supraglan on www.petwellbeing.com. Have you heard or it?

Thanks again for your help & encouragement!

[frijole]

why was your dog having cortisone shots? is he still getting them?

cushing's is tough to diagnose and other illnesses can cause the test results to be off. i had it happen on more than one occasion and one of my two schnauzers was misdiagnosed. i would not accept the dx as valid without further testing - you could do an inexpensive uc:cr test (urine) that will tell you if it is NOT cushings. if positive it just means it could be cushing's so not a confirmation but cheap and quick.

You could have an ultrasound done to look at the adrenal glands and other organs. And lastly you could have an acth test done to measure cortisol.

I wonder how much experience your vet has in treating cushings'. It is well documented by experts that you are never to treat a dog without symptoms. If your dog doesn't have symptoms I'd tend to just wait and see what happens. The main two are extreme appetite and/or thirst. (inhales food, head butts trash cans and drinks buckets)

One of our mods, Deb is a med tech and hopefully she'll see your blood panel results and offer her insights.

Kim

PS Yes extreme stress can affect the test results although this test is harder to fool. If your dog is getting cortisone shots then that would definitely cause this result.

[jrepac]

why was your dog having cortisone shots? is he still getting them?

cushing's is tough to diagnose and other illnesses can cause the test results to be off. i had it happen on more than one occasion and one of my two schnauzers was misdiagnosed. i would not accept the dx as valid without further testing - you could do an inexpensive uc:cr test (urine) that will tell you if it is NOT cushings. if positive it just means it could be cushing's so not a confirmation but cheap and quick.

You could have an ultrasound done to look at the adrenal glands and other organs. And lastly you could have an acth test done to measure cortisol.

I wonder how much experience your vet has in treating cushings'. It is well documented by experts that you are never to treat a dog without symptoms. If your dog doesn't have symptoms I'd tend to just wait and see what happens. The main two are extreme appetite and/or thirst. (inhales food, head butts trash cans and drinks buckets)

One of our mods, Deb is a med tech and hopefully she'll see your blood panel results and offer her insights.

Kim

PS Yes extreme stress can affect the test results although this test is harder to fool. If your dog is getting cortisone shots then that would definitely cause this result.

I also agree w/Kim, get the UC:CR test done. But take the urine sample at home, in the am (first pee), NOT when he is at the vet. The anxiety factor can increase the cortisol output.

And, if your baby has been getting cortisone for some time, that can bring on Cushings. I believe it is called itirogenic cushings...produced from treating some other condition w/steroids.

The weakness in his hind leg could be early signs of Cushings; that is possible, even w/out presence of the other symptoms. In the early stages, they may not present all of the symptoms, but just some.

Trilostane is very well regarded in terms of safefy, so don't worry too much. But, get the diagnosis confirmed first.

Jeff, Angel Mandy & The Gang

[ShannonJ92]

Rebecca,

I'm by no means in a position to offer you much advice as I'm very much like you, my Yorkie Pebbles who is 9 years old was just recently diagnosed this month. I have been a basketcase and doing as much research as possible and also like you trying to figure out what the best action is in terms of Lysodren or Trilostane or neither or what it means if it's treated or not treated and how to know when. There is a thread about Pebbles in which I describe her underlying issues which makes the meds even more scary, but I know it may help her but still don't know how her pancreatitis history and now kidney concerns will be affected. I am so sorry that this is happening to you and Scooter, I am more than willing to talk further with you just based on an emotional level of trying to figure out what to do because we love our little Yorkies so much. We are fighting this battle too and need all the support we can get.

~Shannon

[Harley PoMMom]

Ahhh. I just typed a long response but I guess it took me too long so it didn't post & now I have to re-type. I will try to shorten.This has happened to me too! But if you check the "Remember me" box before you sign in, it should not happen again.



That's it in a nutshell. I'm seriously considering getting a 2nd opinion but I don't know if it's necessary or not. I don't want to put him on Trilostane if he doesn't need it but I just don't know. I'm a mess! Is there anything else I can give him? I found Supraglan on www.petwellbeing.com. Have you heard or it?

Thanks again for your help & encouragement!

That stuff from petwellbeing will do nothing to help treat the Cushing's. Trilostane/Vetoryl and Lysodren/Mitotane are the drugs most rx'd that will lower elevated cortisol.

Strong symptoms are a huge part of making the diagnosis, and a Cushing's savvy vet will not initiate any treatment without strong symptoms and a proper diagnosis. If Scooter is not displaying overt symptoms of Cushing's than, IMO, treatment should not be started. Cushing's is a slow progressing disease which allows the owner time to get a proper diagnosis when symptoms do occur.

Please know we are here for you and Scooter and we will help in any way we can.

Love and hugs,
Lori

[Cyn719]

Rebecca The advice I can give you is to listen to the advice of Kim - Deb - Leslie and all the Cush Angels on this forum - they know what they are talking about - When I came on this forum they basially saved my dogs life!!! They know what the results should be and what test the dog needs - My Penny was diagnosed with Cushings when she was 7 1/2 - 8 years old and she didnt start the meds until she was 11 - like they are saying if the dog isnt drinking tons of water - peeing all the time - panting non stop then you should not treat the dog with the meds yet and the dog should be retested - I dont know why the vet would want to put the dog on this medication is there are no symptoms yet - and the trilo is a good medication when monitored correctly - my Penny is doing pretty good right now since she is on the correct dose and she will be 12 in Novemeber - She had a bad leg from a hock injury and there is weakness probably from the Cushings but she is holding her own - I know its hard I freaked out when I found out but with the comfort of everyone on this forum I can be at ease knowing they are all here for me - I hope you will feel that way and beable to breath and take it one day at a time - Like I said listen these wonderful people - when it comes to Cushings they know what they are talking about!!:)

[Squirt's Mom]

Hi Rebecca,

What Jeff is talking about is Iatrogenic Cushing's. This form of Cushing's is caused by use of steroids in any form. It is easily treated by simply weaning them off the steroids. Iatrogenic Cushing's is not caused by physiological changes like true Cushing's or Atypical Cushing's.

If Scooter had been getting these shots for a period of time, the shots could easily cause the few behavior changes you have seen and could cause the changes in liver values. How many shots did he have and for how long was he on them?

Suprglan, Cushex, ect. have one purpose - to line the pockets of those selling these products. They prey on us vulnerable parents who are scared of the drugs used to treat this disease. One of our admins has written to these companies asking for proof these things work and has gotten nothing but the same drivel posted on their sites. Why wouldn't they be GLAD to share this info??? Easy - they would lose sales. Bottom line - don't waste your money.

From where I stand, based on what you have shared so far, I would say you have plenty of time to learn about this condition, it's tests and treatments before you have to take any action - if you ever do. So relax a bit, take a deep breath, and know you are not alone.

Hugs,
Leslie and the gang

[addy]

Hi Rebecca,

I wanted to welcome you also to our forum. My pup was diagnosed June 2010. We started treatent June 2011 as I felt her symptoms were mainly hair/coat issues and hind leg weakness so I wanted to wait for stronger symptoms.

Every dog is so different. Take your time and do your homework. You are the only advocate your baby has. Don't rush into anything. It can seem overwhelming at times. When that happens, we put Cushings "in the drawer and lock it up" for awhile.

The devastation fades to acceptance as you come to terms with things. Coming here helps. We are always here for you for we have all walked that same path.

Hugs,
Addy

[ScootersMom]

Hello everyone. I'm sorry it's taken me so long to get back to all of you. I was out of town & then was having computer problems. Thank you all so much for your encouragement & support. I did take Scooter to another vet for a 2nd opinion & he said not to do any treatments without any symptoms. Scooter will be 14 in November & he said he may never show any symptoms. He is doing wonderful. And after reading what all of you have said, I feel sooooo much better. Thank you, thank you. Oh, and about the cortisone shots...because Scooter is an amputee & only has 3 legs, sometimes his little back & neck will bother him & I always know because he moves really slow & his hesitant to do his morning "shakes." So, I take him & he gets a cortisone shot & is back to his 'ole self the next day. But he doesn't have them often. He had one 3 months ago and then it had been 5-6 months prior. So, it's not something that he was having a lot of but on an average twice a year for the past 2 years. So, I don't know that was what cause the positive results of the cushings test or not. But, all I know is that right now he is playful, happy, & healthy & I love him soooo much!!! I don't know what I will do without him one day. He's my everything! I'm so grateful that I found this website. Thank you again everyone! You helped me through a very devasting & stressful time. I will keep you updated on Scooter & how he is doing. :D

[Squirt's Mom]

Hi Rebecca,

What great news! :D I agree whole-heartedly with the second opinion you got and am so glad you went to see another vet! :D:D:D

I fully understand how you feel about your Scooter - my Squirt is 14 and has been with me since she was 5 weeks old. She is the light of my world, my heart and soul dog, and I cannot fathom the day when she will no longer be by my side. You and I and the others here are so very lucky to have such love in our lives - we are the blessed ones on this planet! :)

Keep in touch - ya'll are family now and we want to know how things are going with the both of you!

Hugs,
Leslie and the gang