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Alexislue & Mommy too!
04-21-2014, 10:40 PM
I will try to keep this brief, as my last 3 attempts to post I timed out due to the amount of info I put in here.

I will start by saying Hello, my name is Melissa, I have two little angels, Tia a 9yo Doxi and Alexis a 7yo Boston.

I brought Alexis to the family used vet back in October for puffy eyes, I thought allergies..... The vet wanted to do blood work just to check for thyroid and diabetes, based on what I was saying about some changes I noticed as of lately. Of course an increased thirst, followed by more tinkle time, and ravenous hunger... Well long story short we found out she may have Cushings and that we needed to do the low dose dex test. After that based on her #s being so high, we were lead to an ultrasound. Well I thought it was going to be an easy fix, but there is nothing on here adrenal gland, so of course that means its in her brain. We started her on Vertoyl 60mg (sp?) per the vet by Jan1st 2014.
She has had only one other dex test and that was last week, which the vet called back and said the results looked like she had never even taken meds at all and that we need to up her meds to 44lb dog medication (shes 26.7lbs).

MY ISSUES and CONCERNS
Why is it after they do the dex test her symptoms get worse. For example I have been lucky enough to be able to observe her daily since she started her first dose of meds, as the vet said to do. Her drinking was better, her tinkle time was less, her pot belly was less bloated after meals....but her back legs werent getting stronger and in fact her gate was worse all together.
Well after her dex test last week her symptoms were right back to drinking puddles outside (as I monitor her drinking) and searching every corner of the house for crumbs for hours. And now her front legs are displaying loss of muscle mass. Is that even possible!??! I mean she gets her meds daily with her meal, you would think shes not on anything..
Im scared to put her on the higher dose, as she lost a lot of her hair when we first started the med back in Jan, and she finally started to look healthy again to all of us in the family. But the vet gave me a harsh reality when he said "shes still a cushoid and you need to up her meds, as we wouldnt want a dead little dog on our hands. Talk about pressure!!!!
I have read a lot about this disease, and saw something about natural supplements like Melatonin (sp?) that could help...

I have so much more, but im afraid im going to time out again.
ONE THING I CARE ABOUT THE MOST IS DOING THE RIGHT THING FOR HER TO LIVE THIS OUT. SHE WAS ONLY 6 WHEN WE FOUND OUT, and SINCE OCTOBER SHE HAS GOTTEN SO MUCH WORSE....am I doing the right thing....or am I killing her! :( What if she has something else wrong with her, not cushings, which is why her meds arent helping her levels. It kills me everyday to look at her fading away in front of my eyes, getting weaker, and grey from all the stress. (all the fur that grew back was grey).....Its just sad, I feel helpless.

Alexislue & Mommy too!
04-21-2014, 10:52 PM
I just read some other posts and have another question:

Why would my vet tell me to have Lex fast before her dex test, if by doing so her numbers would be off.

She has her meal at 1pm daily with med. Could the time between meals affect the results?

Iraklis
04-21-2014, 11:03 PM
Wait...when you say only one dex test ,you mean Low dose dexomethasone test?

If so...your vet is an idiot ,if you don't mind me saying so...

What you need to do is perform the ACTH test!
He should do that at
A.10 days after starting Vetoryl.
B.Than at 1 month,
C.and every 3 months.
If dose is changed ,back at A.

btw, when doing that, the dog should take Vetoryl WITH food ,fasting is when the ACTH test is done to check IF the dog has Cushings. In your case it should be done to check how much cortisol drops due to Vetoryl.

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/47902_VETORYL_10mg_Treatment_and_Monitoring_Brochu re_Update_3_2_ps.pdf

Do not accept his refusal to follow the protocol!!!
I did and it eventually cost my babys' life!!!

Harley PoMMom
04-21-2014, 11:04 PM
I have only a moment to post, I hope your vet is not doing the (LDDS) low-dose dexamethasone suppression test to monitor Alexis' treatment, as only the ACTH stimulation test is used for monitoring. And yes, Trilostane needs to be given with food to be properly absorbed so if the vet is having you fast Alexis on the days of her monitoring ACTH tests than those results will be skewed and of no use.

Please do take a look at our Resouce thread as it has a wealth of info regarding Cushing's : Helpful Resources for Owners of Cushing's Dogs (http://www.k9cushings.com/forum/forumdisplay.php?f=10)

Welcome to you and Alexis, I am sorry this is so short but I am sure the others will be by and will share their knowledge and support.

Hugs, Lori

Alexislue & Mommy too!
04-21-2014, 11:35 PM
Im sorry I may have been vague in that first post. I know she has had the right tests. I just didnt name them right.

Alexis has had the first test which I had to have her fast the night before and I had to leave her all day 7am-4pm for the initial Cushings blood draw test. The second and only other test was a short test from 8am-10am. Now that you mention it, there was a complete miscommunication from his office. I asked them when they called to remind me if she needed to fast. (yes) When I dropped her off they first said ok we will see you at at the end of the day, only to get a phone call 2 hours later saying shes ready!!!!!!???? Im so disappointed in myself for trusting this vet, as he has been the family vet for over 20 years, I just trusted my baby girls life in his hands and believed his every word..There was no other test done. The vet gave me the medication and told me to monitor her close and I did. If I had thought for a second she wasnt better or was getting worse I would notify him and he didnt push to check her levels after she first started on the Med because she was doing so much better so we thought 60mg was working. It wasnt for 3 months after that I called for a script refill and they "suggested" she come in for the test just to check the levels.

To be honest I hate putting her through it. Every time I leave her it takes at least a full 24hrs to get her back to herself.

I live in a small country town in the middle of no-where-land and there isnt many options for other vets. I just feel like there is nothing i can i do to make this better, no mtter how much i read up on this, this vet just really has poor bedside manner. I dont see him to even ask questions, when i drop her off. Wouldnt you think he would want to inquire info as to how shes doing, when her last med was, hows shes eatting/drinking, how her energy has been....but no, I walk in, hand her and her blankie to a nurse, and cry as I walk out to my car.

I will find her test results and post them tomorrow. Hope everyone has a blessed night...Its snuggle time with the pups <3

Alexislue & Mommy too!
04-21-2014, 11:37 PM
p.s thank you for the link.

The more I know, the more I can help her!!!

So thanks again from both of us

Iraklis
04-21-2014, 11:51 PM
Im so disappointed in myself for trusting this vet, as he has been the family vet for over 20 years, I just trusted my baby girls life in his hands and believed his every word..

I did that too...trust the vets i mean...

Lesson learned is never blindly trust a vet!
Here is more info on Vetoryl!
http://www.k9cushings.com/forum/showthread.php?t=185


imo, Do an ACTH test as per protocol as soon as possible (Vetoryl SHOULD be taken WITH food btw, fasting is wrong) and post the results.

Afew other questions...
What does Alexis eat and do you give anything else other than Vetoryl?
Is MRI an option you can afford?

Does Alexis get stuck in corners or circling?
Have you noticed loss of muscle mass (easier to spot is the head, if the jaw muscle waste the cranium bone is felt protruding)

Alexislue & Mommy too!
04-22-2014, 12:17 AM
I have never seen her circle or get stuck in a corner. She is losing muscle mass in her backend, I see it as she walks, sits, stands. And the vet says he noticed it more in her front end this last time, which makes since, because she will sit down and cant find the energy to move her front legs so she can lay down, she falls asleep sitting up unitl she collapses or I pick her up, because I cant see that i makes me so sad....

So she eats dry pedigree food for small breed, and yes I do give her med with her meal every time.

The only med she is on is Vertoyl and thats all she has ever taken in her life really besides benadryl 25mg from time to time.

Sadly MRI or extra tests do not fall in my money situation. I love my pets and I would do anything for them and in fact iv missed car payments to afford her medication... (These two dogs are my first owned pets as an adult, they are like my children.) I must sound like a terrible person, :(. But for almost 7 years these girls were healthy, yearly shots was all I had to worry about... Up until October 2013, my world came crashing down when I found out she was going to be sick forever and my hands were sort of tied as to what I could do to help her. I just look at her and cry some times...

Iraklis
04-22-2014, 12:35 AM
I know money can be an issue ,trust me...

High quality protein like chicken breast can help with muscle wasting.
There are also supplements you can give to counteract muscle wasting and help Alexis cope with increased cortisol in her body (ex. Omega-3, turmeric/curcumin, melatonin and spinach juice ,BUT don't go rushing out and start giving these as there are things you need to know first) ,but first things first...
Pls do a correct ACTH test (as per protocol) and post the results!

Whatever the vet says...screw him and insist on what you know is right!...after all you are paying him to treat a member of your family, not to fix a broken bolt!

Harley PoMMom
04-22-2014, 02:10 AM
Hi Melissa, I'm back! I have replied (in blue) within the body of your post, and have some more questions. :eek:



I will try to keep this brief, as my last 3 attempts to post I timed out due to the amount of info I put in here.

I will start by saying Hello, my name is Melissa, I have two little angels, Tia a 9yo Doxi and Alexis a 7yo Boston.

Losing a long post can be so frustrating, if you check the "remember me" box when you log in you shouldn't get timed out.


I brought Alexis to the family used vet back in October for puffy eyes, I thought allergies.....

Is Alexis taking any other herbs/supplements/medications? Has she been on any steroids such as prednisone?


The vet wanted to do blood work just to check for thyroid and diabetes, based on what I was saying about some changes I noticed as of lately.

I am assuming that diabetes and thyroid issues have been ruled out? Were there any abnormalities in your dog's blood panel?


Of course an increased thirst, followed by more tinkle time, and ravenous hunger... Well long story short we found out she may have Cushings and that we needed to do the low dose dex test.

Strong symptoms do play a huge part of a Cushing's diagnosis but other non-adrenal illnesses can share some of the same symptoms of Cushing's, such as diabetes and thyroid problems.

Was an urinalysis done?



After that based on her #s being so high, we were lead to an ultrasound. Well I thought it was going to be an easy fix, but there is nothing on here adrenal gland, so of course that means its in her brain.

Was the size of the adrenal glands noted on the ultrasound report? There are 3 types of Cushing's; Pituitary-dependent hyperadrenocorticism (PDH), Adrenal dependent hyperadrenocorticism (ADH), and Iatrogenic Cushing's, which occurs as the result of over administration of corticosteroids such as prednisone.

Dogs with pituitary based cushing's usually have two equally enlarged adrenal glands. If an adrenal tumor is involved, only one gland will be enlarged and the other gland will be much smaller or atrophied.


We started her on Vertoyl 60mg (sp?) per the vet by Jan1st 2014.
She has had only one other dex test and that was last week, which the vet called back and said the results looked like she had never even taken meds at all and that we need to up her meds to 44lb dog medication (shes 26.7lbs).

The 60 mg Vetoryl starting dose is a bit high for Alexis' weight of 26.7 lbs. We have seen dogs do better and with less side effects when started at low dose of 1mg/lb of a dog's weight, so for Alexis that would have been 27 mg of compounded Trilostane or 20mg - 30 mg of Vetoryl.

Trilostane, which is the active ingredient in Vetoryl, has to be given with food to be properly absorbed. The timing of the ACTH stimulation tests has to be done 4-6 hours after the dose of Trilostane has been given, has the vet been following this protocol?


Why is it after they do the dex test her symptoms get worse. For example I have been lucky enough to be able to observe her daily since she started her first dose of meds, as the vet said to do. Her drinking was better, her tinkle time was less, her pot belly was less bloated after meals....but her back legs werent getting stronger and in fact her gate was worse all together.

Well after her dex test last week her symptoms were right back to drinking puddles outside (as I monitor her drinking) and searching every corner of the house for crumbs for hours. And now her front legs are displaying loss of muscle mass. Is that even possible!??! I mean she gets her meds daily with her meal, you would think shes not on anything..

Some dogs do have a reaction to the stimulating agent in the ACTH tests but this should not last long.


Im scared to put her on the higher dose, as she lost a lot of her hair when we first started the med back in Jan, and she finally started to look healthy again to all of us in the family. But the vet gave me a harsh reality when he said "shes still a cushoid and you need to up her meds, as we wouldnt want a dead little dog on our hands. Talk about pressure!!!!
I have read a lot about this disease, and saw something about natural supplements like Melatonin (sp?) that could help...

Well now that a awful thing for the vet to say. :mad: The medications generally used for Cushing's are Trilostane/Vetoryl and Mitotane/Lysodren, these are strong drugs but are lifesavers for dogs with Cushing's when used correctly. Adverse effects are usually a result of an inexperienced vet and uneducated owner.

Unfortunately there are no natural supplements that can lower a dog's elevated cortisol to within the therapeutic ranges that are needed with Cushing's disease.


I have so much more, but im afraid im going to time out again.
ONE THING I CARE ABOUT THE MOST IS DOING THE RIGHT THING FOR HER TO LIVE THIS OUT. SHE WAS ONLY 6 WHEN WE FOUND OUT, and SINCE OCTOBER SHE HAS GOTTEN SO MUCH WORSE....am I doing the right thing....or am I killing her! :( What if she has something else wrong with her, not cushings, which is why her meds arent helping her levels. It kills me everyday to look at her fading away in front of my eyes, getting weaker, and grey from all the stress. (all the fur that grew back was grey).....Its just sad, I feel helpless.

A confirmed diagnosis of Cushing's is needed before any treatment is started, a cushy savvy vet will not initiate any treatment until the diagnosis of Cushing's can be validated.

We do understand how confusing this can be but we are here to help in any way we can so please ask all the questions you want, ok?

Hugs, Lori

My sweet Ginger
04-22-2014, 08:45 AM
' I love my pets and I would do anything for them and in fact iv missed car payments to afford her medication...'

Hi,
How about you look into Care Credit credit card if you haven't already.
I got this info on here and I applied during one of our many visits at the vet hospital. The process was very easy and right then and there I was approved. It's been very helpful and also takes some worry off my mind knowing that I have something to fall back on.

I hope you will get a diagnosis very soon so Alexis can begin her treatment. Good luck.

goldengirl88
04-22-2014, 10:02 AM
Welcome to you and Alexis. Sorry your baby is having problems. The very first thing I always see is the starting dose of Vetoryl. It would seem your dog was started on a very high dosage for her weight. Some dogs do not do well when started too high. I personally would have started this dog on 20 mg. If you start out low, it lessens the chance of your dog having problems adapting to the drug. In the beginning 30 days or so their cortisol can drop quickly, and continue to do so for that period and sometimes a little longer. That is the first thing I would have questions about. The second thing is from what you said you had the dog ready to go in for testing, then it was not done until afternoon?? If so this is the time frame. You feed the dog you do not fast him. When you give Vetoryl, feed a little fat in the meal as it is fat soluble. The ACTH test must be completed within 4-6 hours of giving the Vetoryl. If not it is no good. As Lori said sometimes the dog will have a reaction to the stimulating agent. My dog had reactions to the first two, and then was pretty good there after. If the dog is fasted for this monitoring test the numbers will be skewed and the dog can be overdosed from this and the test invalid. As Iraklis said this test is important to establish where your dogs cortisol number is. Also the rear leg weakness will not go away quickly, it takes time to get it back and sometimes it never is the way it used to be. My dog walks a tremendous amount to help keep her muscle and she eats some high quality chicken breast at her meals. That being said if your dog is not used to exercise, I would not start it exercising too much, as Cush dogs can become intolerant to exercise, and it may be too much for the dog. I would start out on small walks when the temperature allows. Cush dogs are very heat sensitive.
The very first thing you need to do is always get copies of all testing, as we will want to see the numbers from everything. Please post the abnormal numbers from the testing done, and include the scale given by the lab showing normals as each lab is different. In order to best help you we need to see these numbers. Also please include the thyroid and diabetes testing results as I don't think you gave any results for those. If your dog had any underlying issues going on when tested for Cushing's it could skew the numbers . If this was my dog I would first be doing the ACTH test using the correct protocols so it is valid. If your vet is unfamiliar with these he can call Dechra for help. It is a good idea for him to talk to the vets there about correct procedures, and correct dosing concerning Vetoryl. Do jot put blind faith in the vet. You are your dogs only advocate, so stay and make sure the test is done during the correct times etc. Care credit is a really good tool to use. I keep one with me in the event of an emergency so I have it. It is a good idea to apply now before you need it. This will all work out so just know you are not alone and we will help you and support you thru this.
Blessings
Patti

molly muffin
04-22-2014, 06:24 PM
hello and welcome to the forum. Wow, okay, so lets start with the test results.
If you can round up the before treatment, and post any LDDS or ACTH results and any abnormal results from normal blood word, this will help us give better feedback.

LDDS would have been an 8hr test, a draw, a 4 hr and an 8 hr, fasted.
An ACTH which is what is used to monitor cortisol after treatment is started should be done 4 - 6 hours after giving the morning dose of vetroyl with food. (this is important to be accurate of what is going on in her body)

So, adrenals normal size? Diabetes and thyroid ruled out.

60mg is way high for starting and a really big reason that we'd like to know what her current results are and if the proper protocols have been followed.

So lets take this slow and easy. Cushings is a slow progression disease, so you do have time and shame on your vet for saying such a horrid thing. sheezzz

I wouldn't increase until you can post the test results, get some feed back and all the information you need to make a decision about your next step.

We'll get through it together and the forum is a wealth of information.

Sharlene and molly muffin

Renee
04-22-2014, 07:34 PM
Everyone has provided wonderful advice and asked all the right questions, so I just wanted to pop in and urge you to get your test results posted and also let you know that there are online pharmacies you can order your medication from and it will be much cheaper.

If you ask, many of us will share who we use, what we order, and how much it costs - then you can use that information to make a decision for yourself.

goldengirl88
04-23-2014, 10:57 AM
Just checking in to see how Alexis is doing today. I hope everything is going well, and that we were able to help you. Blessings
Patti