Confused by Cushing (14 y/o Bichon Frise) Lysodren

[Lucky's Mom]

Hi! I am so happy I stumbled onto your forum. My sweet dog of 14 was recently seen at UGA for cataract surgery only to come home with a diagnoses of Chushings. He had a blood test, ultrasound, and they checked his heart. He had a slight murmur, enlarged liver, enlarged adrenal gland. He is currently on day 9 of his medication 375mg of Lysodren and his first blood work was done at day 7. He has had no issues with the medications and continues to act the same. Here's my confusion, his numbers are up not down. My vet is out of town until Monday so I was told by the vet on call to continue giving him the same dose until my vet can call me on Monday. How is it possible for his numbers to go up not down? Does this mean he will not respond to treatment? Do we have the wrong drug?
Confused & Scared:(

[Trish]

Hi there

Welcome to you and your doggy... :)

Unfortunately you are here late at night and most of the resident Cushings experts will be snoozing about now, but you can get ready for them by adding in a few details as they will have lots of questions for you! Please type in all the blood an urine testing that has been done, you only need to type in the ones with abnormal values, remember to add the reference ranges as different labs can have different numbers. Write in any specific cushings test in full, they are ACTH, LDDS or the urinary cortisol test. How much does your dog weigh as that is helpful when working out the correct dosage for Lucky.

Also, list what cushings symptoms your dog has. Eg, excessive thirst hunger or peeing. Hair loss or leg weakness as I don't think you have mentioned them. I know they mostly say do not start meds if the symptoms are not worrying the dog. I also know you need more than one cushings test to diagnose this disease as it can often be difficult to pin down with false negatives caused by other problems. So if your dog has any other health issues list them too, along with any other medications being taken please

Hmmm I think thats about it, I hope I haven't scared you off with these requests but they can really give you so much better insight with the answers to these questions.

Almost everyone arrives here confused and scared, but never fear these angels usually manage to sort everyone out!! So welcome to you and Lucky and the others will be along to offer their input soon.

Trish

[mytil]

Hi and welcome from me as well. I am sorry you both are dealing with this.

I agree with Trish, when you can post the actual numeric results of the tests performed to diagnose Cushing's along with the results of the test performed on the 7th day.

Here is a link to understanding more about Lysodren and the loading process - http://www.k9cushings.com/forum/showthread.php?t=18. The loading process is a very critical time.

Lysodren comes in 500 mgs pills so I am assuming the pills are being split or compounded to the 375 mgs, right?

Is your dog exhibiting any symptoms such as lethargy, vomiting, diarrhea? If so it is very important to know that Lysodren stays in the system for several days bringing the cortisol down further and it is okay to stop giving the Lysodren to him.

Keep us posted
Terry

[goldengirl88]

Hello:
Welcome to the forum. i am sorry for your confusion, and your being scared. We have all been there too. This is a wonderful support and self help group. These people are wonderful and will guide you in what you should be doing and looking for. God Bless You and your baby.
Patti

[lulusmom]

Hi and welcome to the forum.

i only have a minute but wanted to comment on the cortisol levels going up instead of down. You mentioned that there is an enlarged adrenal gland. I am assuming that only one is enlarged which would be indicative of an adrenal tumor. These tumors are highly resistant to Lysodren and the normal large loading doses often time have absolutely no effect. While normal loading doses are anywhere from 25mg/kg to 50mg/kg, loading doses for adrenal tumors can be as high as 100mg/kg. At these high doses, GI issues are common an some vets prescribe prednisone to be given concurrently with the Lysodren. For this reason, many experienced vets prescribing Vetoryl for adrenal tumors.

In order to sort this out with you, it would be very helpful if you would tell us your dog's breed, his weight and what symptoms he had that lead your vet to suspect cushing's. Please round up all testing that was done and post the results here. With respect to the bloodwork, we need only see the highs and lows and please include the normal reference ranges.

Cushing's is one of the most difficult condition to diagnose which makes it one of the most misdiagnosed. There is another reason why a dog may not respond to lysodren and that would be a dog that does not have cushing's. So, there are two scenarios that are likely here....your dog doesn't have cushing's or the loading dose is inadequate. Either way, your pup's well being is our priority and Lysodren isn't cheap, so hopefully we can get this figured out with you sooner than later.

I will be out of pocket for a good part of the day but there are others who are very familiar with Lysodren.

Glynda

[Squirt's Mom]

Hi Mom and welcome to you and Lucky! :)

Gonna ask some questions so we can get a better idea of what is going on so bear with us!

How much does Lucky weigh?

How often are you giving the Lyso? He should be getting it twice a day.

Before you continue giving the Lyso, can you tell me how Lucky is acting? Have you seen any changes in his eating, drinking or peeing? Hopefully a decrease in these areas?

Have you seen any loose stools/diarrhea, nausea/vomiting, weakness or lethargy?

What did you notice in Lucky prior to the diagnosis? Was he eating more, begging for food, getting in the trash, counter surfing?

Had he started drinking more? Peeing more, having accidents in the house?

Did it look like he was gaining weight in his belly but losing weigh in his face?

Had any of his activities changed as in needing shorter walks, not being able to jump on furniture or climb stairs?

Had he sort of withdrawn from you and his family, the things he used to enjoy?

It would help us help you a great deal if you would get copies of the actual test results that were done to diagnose the Cushing's and the results of the ACTH he just had. Too often we have seen vets that don't know how to interpret these tests. ;) Post those numbers and little letters here for any thing that was too high or too low on the blood work and all the info from the ACTH, LDDS, and any other test specifically for Cushing's. Did he have an ultrasound? If so, let us know what the comments from that say as well.

The more you can tell us about your sweet boy the better. We LOVE details! :D Cushing's is one of, if not THE, most difficult canine condition to correctly diagnose but is fairly easy to treat once a confirmed diagnosis is achieved. And we can help you understand this disease. Keep talking, keep asking questions, and we will do all we can to help. I'm glad you found us and look forward to learning more as time passes.

Hugs,
Leslie and the gang

[Lucky's Mom]

Thank you so much everyone for replying. This is the only additional information I have. Lucky was seen on 4/15/13 for cataract surgery and passed all initial testing. On 4/16/13 while on the table awaiting surgery the doctor was rubbing his belly he thought he felt a mass. They called me decision was made not to do surgery and investigate cause. They did a abdominal ultrasound this is the findings (Differential diagnoses include modular hyperplasia, vacuolar hepatopathy, and modular hyperplasia). Lumbosacral intervertebral disc disease. Prior right femoral head and neck ostectomy (6 mo ago) came home back leg was hanging out of socket. Had great recovery from surgery. Differential diagnoses include vacuolar change or hyperplasia. Neoplasia is less likely) Mild right
adrenomegaly. Differential diagnoses include an ademona or
hyperplasia due to pituitary-dependent hyperadrenocorticism. Cholecystitis or mild mutinous hyperplasia. Splenic myelolipomas.
They also did echocardiogram for mild soft heart murmur, recheck in one year.
I do not have lab results but they were positive for cushing. This is my question how can he be on treatment for 9 days and numbers
look worse? I will get them on Monday and post. My vet is out of
town till Monday so on call vet said to continue treatment. Lucky has
had no side effects however this mooring was the first time he did
not finish all his breakfast. Lucky is a Bichon Frise and I have had him sense he was 8 wks old. His only health issue has been occasional hot spots, the hip displacement, and his cataracts.
I wish I had more information. Thanks for listening

I am so confused and scared of over medicating him.

Thanks,
Lenora

[frijole]

Lenora,

First off if he did not eat all his food for the first time please please please STOP GIVING LYSODREN. This is a sign of cortisol being lowered and that you should stop. To continue to give it you risk that the cortisol goes too low and trust me you do not want that. So for now as a precaution cease the lysodren.

How much does your dog weigh and please repeat the amount you have been giving per day. We want to check the dosage amount. How long (# of days) have you been giving lysodren?

As you can imagine it is tough for us to help when we do not have all of the information. We are guessing as to what is going on - so even though you currently do not have all of the info we need you need to go get it. What you want is copies of all lab work whether it is a blood panel, cushings test and a copy of the report for the ultrasound that diagnosed the adrenal tumor (I think you said there was one done)

You indicated that after giving lysodren the number went up. How many of these tests have you done? Did you have one test before starting lysodren and another since? two? We are talking about a two hour test called the acth test.

TO ANSWER YOUR QUESTION AS TO HOW IT COULD BE HIGHER: As Glynda indicated - if it is an adrenal tumor it could be that the dosage isn't high enough. Also note that there are different types of tumors - not all cause cushings. My dog Annie had one and she started on lysodren and her numbers went down and then back up after increasing the dosage. This was because she didn't have cushings. (Yes it is easy to misdiagnose - we see it alot). Her adrenal tumor was a different type.

So give us as much info as you have and understand it is critical that you continue to be involved and question what is going on because your are your baby's voice. Getting info is a great start. I'm linking you to some articles that can get you up to speed on what cushings is as well as info on lysodren.

Repeat - if he hesitated to eat please stop. Also please tell us any and all symptoms you have seen that could be cushings ok? Thanks Kim
http://www.k9cushings.com/forum/showthread.php?t=180
http://www.k9cushings.com/forum/showthread.php?t=181

[Squirt's Mom]

PLEASE do not give any more of the Lyso. The fact that he didn't finish his breakfast tells me he is loaded. You stop now. Call and ask for an ACTH to be done to check the levels and do not let that other vet convince you to keep giving the med - that would be very risky for Lucky. So no more Lyso. ;)

I am not convinced the numbers are truly higher until we see the test results. I am prone to think someone is misreading the results - easy to do if you don't know how to read them. Nor am I convinced based on the ultrasound comments this is adrenal based. Were they able to see only the one gland and not both? It reads as if they aren't sure whether it is adrenal or pituitary based.

If you haven't, please take the time to read the link that was previously provided on Lysodren loading and maintenance. That will help you a great deal in understanding what is going on and why we are telling you to ignore the direction to continue giving the Lyso until your regular vet returns. This tells me the vet who told you this does NOT know how Lyso works and may not have a very good understanding of Cushing's. So listen to us and do not continue giving the Lsyo please. ;)

Watch Lucky closely for diarrhea, vomiting or lethargy and if you see any of this, get him to an ER asap.

How much does Lucky weigh? 375mg twice a day sounds like a lot for a Bichon so were you giving it twice a day as it is supposed to be given or were you dividing that into two doses for a total of 375mg a day?

[Lucky's Mom]

Ok he weighs 22 lbs! His dose was 375mg split up into two doses. I give him 1/2 of a 500 mg tablet in the am and 1/4 in the evening. He is sleeping a lot but he always does. Being off his food has really been his only symptom other than increased appetite. Will take him off him meds until Monday. He had one 8 hour test at UGA initially and a two hour test last Thursday. Will post results of both Monday.
Thanks Everyone,
Lenora
Lucky's Mom

He has been on meds for 11 days today

[mytil]

One of the most common signs cortisol levels are going down is the decrease in appetite and being he did not finish his food IMO I would stop the Lysodren and contact your vet telling them you think he is loaded.

Remember it continues to work within his system for several days after the last dose. I would schedule an ACTH test immediately with my vet.

Keep us posted
Terry

[frijole]

Thanks that is helpful.

First off the dosage is NOT too high. Recommended dosing is 1/2 to 1 tablet a day for a dog that size so your vet split the difference. Most nowadays would have started at a full pill cut in half a.m. and p.m. which is probably why he was not loaded yet - it just took longer.

As Terri said the pill continues to work (erode the adrenal cortex) for an additional 48 hrs and that is why when in doubt - any signs like what you just saw - you stop giving it... because it'll keep working for two more days.

You said you'd keep him off of them until Monday - don't start up again - the next step is to do the 2 hr acth test again and you really want to do it on Monday because as I said - it keeps working so Monday any time is perfect. If you wait til Tuesday or later then the cortisol starts creeping (slowly) up and you don't have a true read on how effective the drug was.

OK so you had the 8 hr test (which is the low dose dex suppression test) and you had the 2 hr test once (which is the acth test). I am confused as to why you thought the levels had gone up? These are two totally different tests. So you are ok. Unless you had the 2 hr test twice you would not know how levels were responding.

As you'll read in the link I provided the goal for a dog with cushings if for the 2nd number on the acth test to be between 1.0 and 5.0. This is their 'cortisol level'. Our goal using lysodren is to keep that level steady below 5.0. When this happens the symptoms remain under control.

Please post any questions you have and keep us posted. Kim

Do

[Lucky's Mom]

Kim, Thank you so much for your help! I have already learned so much from all of you. I am going to take him off his evening dose and not give him any thing else until we see vet on Monday. I will continue to read more. Have a great weekend, Lenora

[Squirt's Mom]

Hi Lenora,

Thanks for the extra info!

The two tests she had done work in two different ways. The one that took all day, the LDDS or low dose dexamethasone suppression, is a test to see how well the adrenal glands can suppress cortisol. The pup is given an agent that suppresses the production of a chemical called ACTH which triggers the production and release of certain hormones among which is cortisol. Normal adrenal glands will respond by suppressing the extra cortisol but certain illnesses like Cushing's will prevent the adrenal glands from suppressing.

The test that took 2 hours was the ACTH which is basically the opposite of the LDDS - it is a stimulation test that stimulates the adrenal glands to empty as much cortisol as they can - sort of like a sponge being squeezed of water. Normally functioning adrenals will hold X amount of cortisol but illnesses like Cushing's will cause that amount to be more than it should be. The ACTH test measures whether a pup's adrenal glands are holding the correct amount of cortisol.

Since the two tests look at different things, the numbers can't be compared. The LDDS is a diagnostic tool only and cannot be used to monitor once treatment has begun. The ACTH is used both for diagnosis and is the test used to monitor treatments. A cush pup will have numerous ACTHs but typically only one LDDS.

Good and confused now? ***dusts off hands*** Then my job is complete for the moment. :p

Hugs,
Leslie and the gang

[Lucky's Mom]

Leslie,

Yes! I am good and confused, however feeling like an idiot for not knowing more than I do. Honestly I was shocked to find out he was sick ( other than increase in appetite and pot belly) both of which I thought were age related he seemed normal. I am going to stop the drugs for now until I here from the vet on Monday because I am concerned with overdosing. He has been on 375 mg for 11 days now with no side effects at all. Today at breakfast he did not eat all his food however at lunch he was wanting my chicken sandwich. At 14 I am very concerned about his quality of life so this is panicking me a bit. Your forum is awesome and the responses overwhelming. I must confess I have been reading off and on all day different threads and the one common goal I find is panic and heartbreak at this diagnosis. I just want to be sure as his Mommy I do what is right for him not what is easiest for me. TEARS.
Thank you again for your reply and handholding

[frijole]

I'm going to forewarn you - if your vet or the lady at the desk that answers phone tells you to keep on giving the drug don't. Just because you 'just had an acth test' doesn't mean that after a couple days the cortisol didn't drop. Unless a vet has actually used this drug they can't understand how touchy it is. Don't be afraid of it - just pay attention to it. Make sense? I am assuming your dog scarfed down food like he was starved like most cush dogs.

Rule states if your dog hesitates when eating when they used to scarf it down that means it is time to test. It doesn't matter if he was hungry at lunch. Remember this stuff keeps on working and the way it works is that it erodes the adrenal cortex (shortens it) that is the where the cortisol is produced. Cush dogs make too much so shortening it help keep it lower and protects your dog. If you keep giving it you could erode too much and then your dog is a sick puppy and has to be treated for low cortisol.

Did your vet give you prednisone to give in case of emergency? I'm only asking because he should have not because I am worried about your dog. :)

I would really like to see the test results because I THINK the reason he isn't sure whether it is pituitary or adrenal cushings is because the long LDDS test came back with that. Reading the ultrasound report will tell us if they were able to see only one or both of the adrenal glands and we can make some assumptions as to the type of cushings by knowing what is in that report. It would be nice to know which type as treatment sometimes varies depending upon which type.

I won't overwhelm you any more... you did the right thing by hitting google and finding us. That's how I landed here over 8 years ago. My thread title had overwhelmed in it :) True story. My girl lived to be 16 1/2 and used lysodren for 4 1/2 yrs. She passed of old age not cushing's.

Keep reading and ask us questions. Kim

[Lucky's Mom]

Kim, your post brought tears to my eyes, just to think Lucky could survive this. Thank you for some glimmer of hope (I have felt like we were given a death sentence). Yes I have prednisone but have not found a reason thus far to use it. This is what the UGA discharge papers say about test and ultrasound. Abdominal palpation revealed an enlarged liver,which prompted further diagnostic imaging. Abdominal radiographs and ultrasound confirmed a diffusely enlarged liver, but no discrete masses or tumors. Additionally, one of the adrenal glands was mildly enlarged on ultrasonic evaluation. All of these findings, combined with the evaluated liver enzymes on his chemistry profile are suggestive of an endocrine disease known as cushings. An ACTH-stimulation test was preformed (I do not have results) they confirmed findings.
To some degree all this is pig Latin to me....
Thanks again...
Lenora & Lucky

[frijole]

THanks that is helpful. When one adrenal gland is enlarged it signals adrenal vs pituitary cushings. That said - the report indicated slightly enlarged and so I don't want to assume that especially since 85% of cases are pituitary and your dog's is not one I've seen be prone to adrenal form. So I'll wait til we get the Low dose dex suppresion test results (8 hr).

Is your vet affiliated with UGA or did you drive there to have the ultrasound?

Since your baby is older you need to know that cortisol masks pain (ie arthritis) and so when you start removing the cortisol you might notice signs of arthritis that were not there before. I used adequan shots and glusosamine chond for my gal.

You will be fine - just make sure they get you in on Monday for the acth test. When was the last time they did one? Thanks. Kim

[Lucky's Mom]

I drove to UGA for ultrasound. The test you are talking about was done their as well after ultrasound and faxed to my vet here in Greenville, SC. After 7 days on meds we did the two hour test for the first time last Thursday. I will have all blood work available to share on Monday when vet opens. Thanks

[Simba's Mom]

Hello and welcome, so glad you found us here...hope you find some answers soon to help you with Lucky, the moms and dads here are very smart, so get ready with your questions!

[molly muffin]

Hello and welcome from me too.

Kim and gang, doesn't the ultrasound report say pituitary-dependent hyperadrenocorticism. Which make me think, either they only saw one and didn't think it was an adrenal tumor just mild enlargement or they are both only mildly enlarged.

Hi Lenora and welcome to the forum. :) Oh we all understand scared to death when we hear cushings. Especially when most of us had never heard of it before and didn't know there might be anything wrong at All. I mean, talk about a gut punch. However, treat it with a qualified vet that will work with you and you can have a dog with a normal life span. Many on here have done so. I'll leave the lysodren discussion to those who have used it and know it, you've already met a few of them and they are our resident experts on Lysodren and will certainly help you though all of this.

Welcome again and Hugs,
Sharlene and Molly Muffin

[Lucky's Mom]

Thanks for the warm welcomes! Finally I have both the eight hour test in my hand and his first two hour test. Lucky was put back on the loading dose on Monday of 375mg split over two doses. We will return to the vet Thursday for yet another blood test. His first two hour test was as follows:
Time 1. 9
Time 2 10
Cortisol Sample 1. 5.5 High
Cortisol Sample 2. 20.1. High

My Vet said he is not loaded yet so back on meds. Lucky still shows no signs of appetite slowing down or any other side effect. I am not sure what you are wanting me to post from the 8 hour test so please advise as it is fairly lengthy. I ask my Vet (whom I have always trusted) if this could be a misdiagnosis and he said not likely due to the ultrasound, and blood test. I am taking Lucky to NC to see a veterinary acupuncturist on Friday. I am totally at a loss here. I feel terrible because he hates getting these pills shoved down his throat twice a day and I am not sure they are even doing anything. Thanks for listening to me rant. Lenora
P

[frijole]

The low dose dex supp (LDDS) test has 3 readings so there will be 3 numbers on it. Those are what we need.

Keep us posted on how it's going and do not be afraid to ask questions. I take it you didn't have a test done on Monday. Did the vet just tell you he isn't loaded? If so I will warn you - keep an eye out because these are the situations that come back to bite you. I repeat if you see any changes in the way they eat - even if it is just eating slower - please trust me get the test done. We have seen dogs many times end up in trouble and it is way better to be safe and have an acth test then to end up on IVs and struggling.

Are you monitoring water intake? Not sure if there was excessive intake or not - but if so measure it so you can tell if that decreases also. Good luck!!!! Kim

[lulusmom]

Thanks for the warm welcomes! Finally I have both the eight hour test in my hand and his first two hour test. Lucky was put back on the loading dose on Monday of 375mg split over two doses. We will return to the vet Thursday for yet another blood test. His first two hour test was as follows:
Time 1. 9
Time 2 10
Cortisol Sample 1. 5.5 High
Cortisol Sample 2. 20.1. High

Hi Lenora,

Was this particular test done before loading or is this the most test done after initiating loading? I noted that you mentioned shoving pills down Lucky's throat. Lysodren should be given directly after a meal or while eating a meal for optimum absorption. Dogs who eat once a day, should be switched to am and pm meals until loading has been achieved. If you give Lysodren without food, it will not be absorbed into the GI tract. My two cushdogs got their pills wrapped in cream cheese or peanut butter after finishing their am and pm meals. The fat in the cream cheese and pb definitely facilitated better absorption.

Glynda

[Lucky's Mom]

Glynda,
I try to wait until he has eaten because if I put it in him food the little bugger will eat around it. I usually wait 30-60 mins to make sure he has something in his tummy. I give it to him with applesauce but I will try the cream cheese. He is going for his second test tomorrow but I still do not think he is loaded (because hie is still eating well). The first blood test result are from his first testing after a week on the meds. The ACTH results are as follows:
CORT-BASELINE. 9.10
CORT_1HR. 42.20

The things that are in the high range on the test are bellow:
PLT. 810
MPV. 10.8
T PROT. 7.3
ALB. 4.8
ALK_PHOS 575
ALT. 266
GLU. 174
CL. 107 slightly low
AG. 30
CA. 11.5
MAG. 2.5
CHOL. 395

Urine:
SP Gravity. 1.038
UR PH. 7.5

Chemistry:
HEM Index. 39
ICT index. 0
Lip index. 12

I have no clue what any of this means. I am still wondering if this drug is actually doing anything? Thanks for all your help, I will post tomorrow's results when they come in.

Lenora

[Squirt's Mom]

Hi Lenora,

Would you mind editing those test result to include the normal ranges and little letters that follow each one? We can't tell how high or low things are without that info. ;)

You can wait til after Lucky eats to give the med but give it immediately after he finishes, don't wait or the med may not be absorbed correctly. If it isn't absorbed, it won't be able to work. Make it a treat event but get the Lyso into him asap after eating his meals. Did you read the link about Lsyodren loading and tips? There you will find the info on this. ;)

Something else that may be in play here is the division of the daily dose. Ideally you would give 1/2 tablet in the mornings and 1/2 at night - this allows a uniform amount of the drug to be maintained in the system. It may not have any bearing but evenly dividing the dose for loading is the normal way a load is approached.

Looking forward to seeing those test results! Be sure to include all the numbers and letters any time you post test results - otherwise they are just numbers with little meaning. ;)

Hugs,
Leslie and the gang