Symptoms

[Bobo09]

Hi my 10 year old bichon frise Bo was diagnosed with cushings in may and started on 30mg of vetoryl on 25 may. Her initial cortisol level was 110. When she was tested 12 days later it was down to 54 so great.
However her symptoms were the same.
She has high protein levels in her urine and the vet was doing tests for this eventually doing an ultrasound to check her liver, kidneys and whilst sedated checked her pituitary glands as the LDDST test did not confirm which type of cushings she has. The pituitary glands were normal size.
They decided that since she was still showing signs of starving all the time, drinking lots, pot belly and very anxious to increase her dose to 40mg on 25 june.
She was tested last monday 8 july and her cortisol was too low, down to 27.59 so back to 30mg a day.

She is constantly following me looking for food, she is on royal canin urinary so lp18 dry food as almost 4yrs ago she had a mixed bladder stone-struvite and co oxalate. She is not allowed anything else. She is still drinking a lot, if i go out and do the front garden she ends up barking for me as she just doesnt want to be apart. Her belly is large (more noticeable because they shaved it to do the ultrasound) and she is uncomfortable when lying. Sometimes i just think she looks a poor soul, miserable and glazed eyes.

It is heartbreaking seeing her miserable (and at times exhausting being constantly hounded for food) she still goes walks but i noticed the other day she has very little body fat now on her back legs/ bottom area.

I just wondered if anybody elses furry pal has taken longer than 6weeks to show any improvement, or any suggestions? We are in Scotland

[labblab]

Hello and welcome to you and Bo! I’m surely sorry you’ve seen no improvement in her symptoms so far. I know how hard it must be for you to see her continuing discomfort :-(. And yes, after six weeks of treatment, we’d be hoping to see at least some improvement in thirst, urination, and hunger. Skin/coat issues and problems such as muscle wasting can take significantly longer. But the hunger and thirst more often show quicker improvement.

In hoping to offer some suggestions, I want to first clarify a few details. It sounds as though Bo had a diagnostic LDDS performed prior to starting treatment. The result must have been “positive,” but as you’ve written, not definitive for pituitary Cushing’s. I’m guessing you meant to write that Bo’s adrenal glands were visualized during the abdominal ultrasound, and no tumors were seen. As a result, your vet is concluding that it’s a tumor on her pituitary gland in her head that’s causing the Cushing’s. It would take a CT or MRI of the head to know for certain, and those tests are rarely done due to the expense. So in the absence of an adrenal tumor, we typically expect a pituitary tumor to be the cause of Cushing’s in a dog who otherwise tests positive for the disorder.

You also are reporting three cortisol levels: one before treatment and two after starting treatment. I am guessing these are all “resting” or baseline cortisol levels, as opposed to cortisol readings taken both before and after the injection of an ACTH stimulating agent. ACTH stim tests remain the most common monitoring tool in the U.S., but we understand that a baseline cortisol level measured immediately before giving the daily Vetoryl capsule has become the typical monitoring tool in the U.K.

However, given the fact that Bo’s symptoms have not improved at all, you may want to talk with your vet about the possibility of performing a full ACTH stimulation test. I believe this test is still recommended as a monitoring too, worldwide, when a dog’s symptom resolution does not correspond with the expectation that you’d have based on a baseline cortisol reading alone. Bo’s baseline cortisol alone may not be giving the whole picture of her adrenal functioning.

Another possible thought is that Bo might be a dog who does better being dosed twice daily with Vetoryl instead of only once in the morning. The medication has a short active life in the body, so some dogs benefit from greater symptom relief when they get half of the daily total in the morning and half in the evening. However, one fact that might make this issue seem less likely in Bo’s case is that her most recent baseline cortisol was low. If, in fact, the cortisol level was indeed tested right before her next dose was due, then it seems less likely that her cortisol level was greatly building back up again within a 24-hour time period.

Has your vet tested for a persistent urinary tract infection? This wouldn’t affect her appetite, but it definitely could cause excessive thirst and urination, regardless of her cortisol level.

Anyway, going full circle, it will help us if you can give us the actual numerical results for Bo’s diagnostic LDDS, as well as any other abnormalities in her bloodwork during the diagnostic process. All we need are abnormal values, as well as the normal range for that value. That’ll give us a great start to our discussion.

Thanks so much, and once again, welcome!
Marianne

[Bobo09]

Hi thanks for your reply, yes the LDDS test was done to confirm Bo had cushings but said not definitive on type. I cannot post a copy of the results but it said
DXM screening test low dose
Cortisol Basal 111 nmol/ 28-250
Cortisol post (3hr) DXM 109 <40
Cortisol post (8hr) DXM 85 <40

Do you need any other info from the test result?
My mistake sorry i meant they checked her adrenal glands during the ultrasound.
The 3 cortisol levels i gave you in first post were from blood tests taken 3-4hrs after her dose of vetoryl which i thought was standard procedure?

She has had numerous urine tests because of the high protein level showing and that was why the ultrasound was done to check her kidney/ liver but they looked okay and kidneys appear fine in blood tests though i know they have to be at least 75% damage to show if kidney failure. She doesnt have any UTI’s, no crystals and no bladder stone showing. During initial blood test her liver enzymes were raised but i dont have any values.
I dont know if they could split her daily dose really, i have never seen the 5mg available here on the websites i use and to give her 20mg/10mg would mean 3 tablets a day and that would be really expensive (there is not much price difference between the 10mg & 30mg tablets) and she is not insured.

When i feed her in the morning she is looking for food soon after so i dont feel we are getting any period when there is no hunger. My vet whom i only moved to just before i took Bo for a consultation does not know why she is not showing any s improvements in her symptoms and wonders if there is something else causing this but she doesnt know what to suggest next. She also is not sure why her protein levels are so high in her urine. We are due to go back in 3 weeks just for general consult.
I just wondered if anyone else had seen no improvements in symptoms really as its sad to see.

[labblab]

Thanks so much for the speedy reply! As far as the monitoring testing, if a full ACTH stimulation test is performed, then the recommended timeframe is indeed around 4 hours after dosing along with a meal (Vetoryl requires food to be metabolized most efficiently). An ACTH stimulation test involves two blood draws. The first is a simple baseline cortisol level. After that sample is drawn, a stimulating agent is injected and one hour later a second cortisol level is drawn. For this testing protocol, it’s typically the second, or post-ACTH cortisol level that is most important in determining the appropriateness of the dose. However, two cortisol levels are provided for each test.

If only a baseline cortisol level is being tested, the current recommended protocol is to draw the blood right before the dose of Vetoryl is given. Since you’ve given us only one cortisol level for each test, I was just assuming that your vet was following the pre-pill baseline cortisol method. However, it’ll be important for you to tell us which way Bo is being tested so that we can better understand what those numbers mean for her. Here’s a link that provides more information about both these protocols.

https://www.k9cushings.com/forum/showthread.php?8925-GENERAL-GUIDELINES-for-Dosing-and-Monitoring-Treatment-with-Vetoryl-(trilostane)

Cushing’s does have the potential to affect the kidneys in a manner that leads to protein being spilled into the urine. We’ve had other dogs here with proteinuria, and if it is a persistent abnormality, vets will often add some additional medicine to help treat the problem. That’s something else we can talk about a bit more. But first I wanted to give that link about the monitoring testing.

Marianne

[Bobo09]

Thanks so much again for your help. I looked at the links but it all confuses me, sorry i am new to this illness despite having bichons for over 20years.

My vet is only doing the one blood draw now each time but it is 3-4hrs after vetoryl/food. (For the 54 & 27.59 results) Should i be asking her to take it first thing in the morning before the tablet? I dont know how much my vet has dealt with cushings before.

I know it is good that her cortisol levels have come down but if Bo looks miserable, uncomfortable with her pot belly and constantly starving it must be awful for her daily.
During the examination in may i was also told that she has grade 2 heart murmur which was never mentioned previously but i read somewhere that could be due to cushings too.

Thanks

[labblab]

My vet is only doing the one blood draw now each time but it is 3-4hrs after vetoryl/food. (For the 54 & 27.59 results) Should i be asking her to take it first thing in the morning before the tablet? I dont know how much my vet has dealt with cushings before.

If your vet is only performing resting cortisol tests, then the blood draw should be taken first thing in the morning before the tablet — NOT 3-4 hours afterward. Here is another link that may make things simpler: it’s the monitoring chart that explains how to interpret pre-pill testing results.

https://www.k9cushings.com/forum/attachment.php?attachmentid=8284&d=1522201966

Previous studies tried to establish guidelines for interpreting post-dosing resting cortisol levels, and they all failed to provide appropriate guidance. It is only now, with this newly developed pre-pill monitoring protocol, that resting cortisols can be considered useful all by themselves.

If your vet is not routinely performing full ACTH stimulation tests, I’m really hopeful she’ll welcome this updated information re: pre-pill testing. To monitor Vetoryl dosing, one or the other of these two protocols really need to be followed. If you can print out the testing guide in the link above and take that to her, that would be a great start. You can show her the other link, as well, that has all the explanatory sections. Also, her greatest resource is just to call Dechra (maker of Vetoryl) directly. They are always happy to advise vets.

So the bottom line is that Bo’s symptoms may not have improved because she’s simply not taking the correct dose of Vetoryl. It’s impossible to know based on the monitoring cortisol levels that have been taken so far. It’s definitely not safe to increase the dose at this time, but down the road and based upon proper testing, it may be appropriate.

Marianne

[Bobo09]

Thank you so much for all your help i really appreciate it. I have saved both the links and i will make an appointment to go back to the vets this week rather than wait the month she suggested. The veterinary nurses are actually in the premises from 7am so she could actually get the blood drawn before her usual morning feed around 8am
I have spent over £1000 so far and really apart from knowing she has cushings there has been no improvement for Bo.

Thanks again

[labblab]

You're so welcome! And truly, Dechra themselves can be a great resource for your vet, either via phone or email. As you'll see in the red box down at the bottom of the interpretation protocol for the pre-pill testing, any time that the cortisol result and the dog's clinical picture don't correspond, Dechra recommends that the vet consult with them. So if Bo's cortisol reading comes back within the desired range this time but she remains highly symptomatic, this would be a good time for your vet to call Dechra and ask their advice.

Marianne

[Bobo09]

Marianne thank you so much, you dont know how much your help means.
I am definitely going to see the vet and make sure Bo is tested properly and if need be get her to contact Dechra.

[Bobo09]

Hi Marianne, just a wee update.
We went to the vets on monday and the pre vetoryl testing was dismissed by my vet. I pointed out the drug company had a protocol in place and also if the dog wasnt responding to treatment they could telephone for advice which they agreed to do. They tested her electrolytes and re did the cortisol (couple hours AFTER tablet). Electrolytes are fine but mistake made in test so they sent blood to lab. The result came back as 28 and i was told this was too low (after speaking to drug co) yet when i questioned the 27 the week before told it was okay.
They answered everything as they should but probably drug companies input there.
For me though its too little too late and today i have moved to a different practice, seeing one of the senior vets tomorrow.
The previous practice did telephone not wanting to lose me but i said i have no confidence, mistakes made, no research done and too may ‘dont knows’ after tests.

So hopefully we will get Bo settled on the correct dose and start seeing some results. This practice work more with the veterinary school so hopefully they will be more knowledgeable on current procedures.

So i just want to say thanks for your help, it made me look really hard at the quality of service we had been receiving and at the end of the day it just wasnt good enough.

[Joan2517]

I'm glad you switched vets. When our pets have any issues, it's better to have a vet that you have confidence in that they know what they are doing. At my vet's practice there I have lost all confidence in the owner. I use one of the others. Even as recently as a couple of weeks ago, he was giving wrong advice! I was ordering the 5mg capsules of Vetoryl for my Gable and because that dose is getting hard to come by, he told me to buy the 10mg and split it! I just stared at him for a second and then told him in front of everyone who was there, that you're not supposed to open and split the capsule. He laughed and said, oh that's right...but I wonder how many others he had told that to!

[Bobo09]

I think i would have given him a mean stare when he laughed after saying split the capsule.
I said today this is a powerful drug and if they dont know how to administer it or monitor it then it can be dangerous. I was told they hadnt done anything dangerous so i replied you denied her previous cortisol was low, reduced dose by 10mg and said come back in a month for general chat, do you consider that responsible?

[Joan2517]

I did look at him with my mouth open in disbelief!

[Bobo09]

Visited our new vet today and Bo will get a pre vetoryl test done on monday then take it from there. He wants to get her on right dose then deal with heart murmur, protein in urine and check her blood pressure.
Felt a weight lift of shoulders when we came out of consult.

[Joan2517]

Sounds like he knows what he's doing! Great.

[labblab]

Oh, I’m so relieved, too, to read this news!! I’m really proud of you for taking the reins and making this switch. Please do continue to update us, each step of the way.

Marianne

[Bobo09]

It was thanks to you and your links Marianne.
My new vet asked if i had seen the flow chart and i produced it on my phone thanks to you.

I will let you know how we progress

[Bobo09]

Another update. A pre vetoryl blood sample was taken and the result was 88.3 which i was told was within the accepted range.
After speaking to the dechra agent they said some dogs just dont show the improvement in symptoms that the results say they should have. Rather than splitting her dose to 10mg twice a day (because i just dont feel her hunger ever goes away) we are going to increase her back to 30mg and see how she is over the next 10-14 days.
She has been very anxious the last couple of days (it has been warm/humid) which has been hard going as she is constantly looking for food or following me everywhere. This may be related to something else though and the vet has spoken about doing a full blood test soon to check as it was done about 3 months ago at previous vets

[labblab]

I’m really sorry that Bo remains so uncomfortable, but it sounds as though you’re doing everything you can to sort things out. I have to agree that a full blood panel will be a good idea if nothing improves. One question...you say you’re increasing her back up to 30 mg. — had she recently been taking less than that?

As always, thanks so much for letting us know, and we’ll continue to keep our fingers crossed in the hope that things will soon get better for your sweet girl.

Marianne

[Bobo09]

Marianne our old vet reduced Bo to 20mg when her blood test result was 28 (two and a half hours after vetoryl). That was the week i decided to move vets. We had left her on that dose until the result of the pre vetoryl results came back.

[Squirt's Mom]

How is she doing on the higher dose this time?

[Bobo09]

We are just back from the vet. He feels she is doing okay on the 30mg so will keep her on it for now. She is booked in to go back on wednesday morning for full blood test, take urine sample and check her blood pressure.
She is still starving, drinking, panting. She found a bit sandpaper from when i was decorating and ate some again. Plus this last week she has decided she wants to lie on her own in the living room at night (walking around at times) which is odd for a dog that constantly follows me from first thing in the morning. Dont know if its connected to anything wrong with her but just something else i have noted.

[Harley PoMMom]

Cushdogs appetites can be insatiable, some members give raw carrots and/or frozen green beans to help with that.

[Bobo09]

Bo had a mixed bladder stone almost 4yrs ago (co oxalate/struvite). I was told she could only eat the royal canin urinary so diet food but have tried her with carrots a few times but she always ends up being sick with them after a few days. The last 2 vets have said she hasnt to get any treats though she does get a small bit chicken with her incurin tablet.