Toby the Bichon so far untreated... Any help appreciated!

[Emmierow]

Hi all, I'm a newbie here. My bichon Toby had his first ACTH test a month ago and the vet told me his results were highly indicative of Cushings. I have suspected Cushings for around a year now- he has been increasingly thirsty and hasn't been able to go more than 4 hours without a toilet trip. His stomach is almost permanently upset and he is even slower on walks than he was when he was younger. He is 11 years and 6 months roughly (I rescued him at around 6 months old). He doesn't pant, he isn't hungry but his hair is thin, he has blackheads and lumps on his dry skin and he has a little pot belly. He gets very frequent bladder infections.
Since the vet 'diagnosed' him, I have chosen not to treat him. I have avidly read the stories on this forum from people who start Vetoryl and their dog seem to go down hill quite quickly. I've done so much research on the drug (the vet wants to start Toby on 30mg Vetoryl OD, and he weighs 10.9kg- I think this is too high a starting dose) and I'm almost sure I don't want to go down this treatment route. I feel as though I know more about Cushings Than the vet does, and as much as I think he's brilliant, I don't trust his judgement on this one. I suppose I could argue that Toby starts on 10mg instead but my boy HATES being at the vet- he is utterly terrified and the idea of having to leave him there so frequently for blood tests is just awful.
I feel like I can't make a good decision here- if I choose not to treat with conventional medicine then I'm taking away his chance of being more comfortable. I'm sentencing him to the rest of his little life being riddled with infections and not giving him a chance.
But if I do treat him then he might become really sick (he is basically a normal, lazy boy at present with only the bladder issues causing any problems) and he will be spending so much time away from me, in the place he fears the most.
I love my boy- it's just him and I at home and I'm on a very low income as a self-employed musician based in the UK. Treatment costs will mean that I have to give up a lot...probably dropping down to two meals a day myself and those will have to be toast and cereal.... But if the medication made it so that he doesn't get any more infections and he is happy for his remaining years, I would do it in a heartbeat. I'm just not convinced that it's the safe way forward.
I have had him on Cushex for a month and it helps his energy levels without a doubt- I'm not an advocate of herbal remedies but I wanted to try something.
I feel totally alone with my poorly pup and my head is permanently swimming with fear and self-doubt. I watch Toby like a hawk for any signs of deterioration. It's a sad time for me. He's pretty much oblivious, thank goodness, and doesn't even seem in pain when he has bladder issues.
He's a pretty chilled out boy-
I just want to do the right thing.
Xxx

[labblab]

Hello and welcome to you and Toby! I wanted to let you know that I've moved your post to our main "Questions and Discussion" forum so that more of our members are apt to see your questions and reply to you directly. I'm afraid I do not have enough time right now to add my own thoughts, but I will try to stop by again later today to write more. In the meantime, though, I'm very glad you've found us! ;) :)

Marianne

[Harley PoMMom]

Hi and welcome to you and Toby!

Bless you for giving Toby his loving forever home! The decision to treat or not is a personal one and we will support you in the decision you make, ok ;)

Cushing's is one of the most difficult canine diseases to diagnose, which makes it one of the most misdiagnosed. One of the things that makes Cushing's so challenging is that there is not one test that can 100% accurately identify it, so vets have to perform multiple diagnostic tests to validate a Cushing's diagnosis. The medications used for Cushing's do not to cure it, the sole purpose of treatment is to remedy problematic symptoms which is why strong symptoms play a huge part of the diagnosis for Cushing's.

It would help us a great deal if you could share more information about Toby, in this way we can provide you with our best possible feedback, and we get this information through a ton of questions so here goes some of mine :eek::)

Could you get copies of all tests that were done on Toby and post any abnormalities that are listed? With respect to the blood chemistry and complete blood count (CBC), you need only post the highs and lows and please include the normal reference ranges. What diagnostic test/s were performed that diagnosed Toby's Cushing's and could you post those results too? Does your boy have any underlying illness that he is taking medication for? And if so, what is it and what is the medication? Were other non-adrenal illnesses ruled out such as diabetes, UTI, or a thyroid problem? Was an urinalysis done to check his urine specific gravity and does he have diluted urine?

Dechra, the makers of Vetoryl, recommend a starting dose of 1 mg per pound of the dog's weight, so with your boy weighing in at 10.9 kg (23.98 lbs) his starting dose should be no more than 24 mg. Since Dechra does not manufacture this specific dosage strength you can either start at 20 mg or have the 24 mg dosage compounded, which is cheaper. Adverse effects usually only happen when the proper treatment protocols are not followed. We have many members successfully treating their dog with Vetoryl.

Cushing's is typically a slowly progressive disease but it does have the potential to cause systemic damage over time such as high blood pressure, vulnerability to pancreatitis or reoccurring pancreatitis, infections, high cholesterol, kidney damage, etc. I don't tell you this to scare you into treatment but I just wanted you to be aware of these risks.

Vet visits can be stressful for some dogs and it sounds like dear Toby is one that gets very upset at the vets. The test that is used to monitor treatment is the ACTH stimulation test and it takes only a bit over an hour to perform. It has a pre blood draw, and then the stimulating agent is injected, after an hour another blood draw is taken. When my boy had this test done at the vets I would have them bring him out to me for that 1 hour waiting time, it was less stressful for him in that way.

Those ACTH stimulation tests are expensive and I was so happy to learn that there is a way to save money but only if you have a smaller dog. Most vets use a stimulating agent called Cortrosyn but we call it liquid gold because it's that little vial that dictates the cost. The vial is .25mg and instructions say to use entire vial but not all dogs need the entire vial. There have been studies done that show using just 5mcg per kg is all that's needed. Since Toby weighs 10.9 kg your vet could get 4 stim tests out of one vial. This has saved members a lot of money, especially those with teeny dogs who can get five and six stims out of one vial. Some vets are not aware of this so we always provide the url to Dr. Mark Peterson's blog which instructs vets on how to dilute and store cortrosyn for future use.

http://www.endocrinevet.info/2012/03/how-to-dilute-and-store-cortrosyn-for.html

I sure am sorry for the reasons that brought you here but so glad you found us and we will help in any way we can.

Hugs, Lori

[Help4Bailey]

Hi all, I'm a newbie here. My bichon Toby had his first ACTH test a month ago and the vet told me his results were highly indicative of Cushings. I have suspected Cushings for around a year now- he has been increasingly thirsty and hasn't been able to go more than 4 hours without a toilet trip. His stomach is almost permanently upset and he is even slower on walks than he was when he was younger. He is 11 years and 6 months roughly (I rescued him at around 6 months old). He doesn't pant, he isn't hungry but his hair is thin, he has blackheads and lumps on his dry skin and he has a little pot belly. He gets very frequent bladder infections.
Since the vet 'diagnosed' him, I have chosen not to treat him. I have avidly read the stories on this forum from people who start Vetoryl and their dog seem to go down hill quite quickly. I've done so much research on the drug (the vet wants to start Toby on 30mg Vetoryl OD, and he weighs 10.9kg- I think this is too high a starting dose) and I'm almost sure I don't want to go down this treatment route. I feel as though I know more about Cushings Than the vet does, and as much as I think he's brilliant, I don't trust his judgement on this one. I suppose I could argue that Toby starts on 10mg instead but my boy HATES being at the vet- he is utterly terrified and the idea of having to leave him there so frequently for blood tests is just awful.
I feel like I can't make a good decision here- if I choose not to treat with conventional medicine then I'm taking away his chance of being more comfortable. I'm sentencing him to the rest of his little life being riddled with infections and not giving him a chance.
But if I do treat him then he might become really sick (he is basically a normal, lazy boy at present with only the bladder issues causing any problems) and he will be spending so much time away from me, in the place he fears the most.
I love my boy- it's just him and I at home and I'm on a very low income as a self-employed musician based in the UK. Treatment costs will mean that I have to give up a lot...probably dropping down to two meals a day myself and those will have to be toast and cereal.... But if the medication made it so that he doesn't get any more infections and he is happy for his remaining years, I would do it in a heartbeat. I'm just not convinced that it's the safe way forward.
I have had him on Cushex for a month and it helps his energy levels without a doubt- I'm not an advocate of herbal remedies but I wanted to try something.
I feel totally alone with my poorly pup and my head is permanently swimming with fear and self-doubt. I watch Toby like a hawk for any signs of deterioration. It's a sad time for me. He's pretty much oblivious, thank goodness, and doesn't even seem in pain when he has bladder issues.
He's a pretty chilled out boy-
I just want to do the right thing.
Xxx

Hi and welcome to you and Toby,
I am also a newbie to this whole Cushing's disease (as of late February).

If you decide to treat Toby with Trilostane/Vetoryl, I would most definitely start with the lowest dose possible as I believe Lori mentioned. My cocker spaniel, Bailey, weighs 24 lbs / 10.88 kg and she is NOW only on 10mg of Trilostane once a day. The vet originally had her on 30mg and it was way way to strong for her and she developed some of the adverse affects. My vet was able to use the reduced amount of Cortosyn for the followup ACTH Stim test which reduced the cost immensely as Lori mentioned! Bailey has had her followup ACTH Stim test and is in the correct range that her symptoms have gone away. That doesn't mean she won't have to have her dosing increased at a later time, but for now she is doing well.
All my best to you and Toby,
Lynette

[molly muffin]

I just want to say hello and welcome to the forum.

You said you are in the UK. I'm not sure if you can get the compounded trilostane there. Maybe, worth asking as it is cheaper and starting on a low dose might help prevent some of the side effects from not treating caused by high cortisol (kidney, blood pressure, eyes, etc) I was one of those who didn't treat for a long time until other things became a problem and it was either treat immediately and stop as much progression as possible or she'd get worse quickly.
Look forward to hearing more about Toby.

[Sadielove]

Hello to you and Toby. I understand your concern and doubt. I have some websites where others chose not to treat and they said lifespan seemed along the lines of their fur baby. I still have my doubts about Sadie since she hasnt lost hair, no incontinence, no excessive thirst. However she has a very large lipoma that my new vet will not treat until her cortisone levels are within range. I have to get my blood results to post. And they haven't mentioned urine gravity to me or ruled out gallbladder. These are things I will be asking about on wed. Feel free to share all. My baby hates the vet too. She so much Aniexty that she drools excessively. We have all ready spent 3 days there over a 3 week period. It is hard daily to determine what to do.

[wendyweneki]

Hello to you and Toby. I completely RESPECT your decision not to treat. I would say to follow your gut. It's about QUALITY of life and if Toby HATES the vet and you have to get a 2nd job to afford the vet - maybe it's best to spend as much time with Toby as possible.

My Panda Bear was just diagnosed on Sunday. I had never heard of this in my life. We are going to the Vet today with all of our questions and concerns.

Thank you for posting and sharing your situation - I learn so much from each and every post here.

Give Toby big hug, kiss and belly rub from Panda Bear and me.

[Joan2517]

Hello and welcome also...if I had it to do over, I don't think I would have given Lena the Vetoryl. I wish I had found this forum before I let our vet put her on 30mgs...I would have had more time to research and learn, then make an informed decision on whether to treat or not...and I think I might not have. I felt rushed into making the decision to treat when I really had time to think about it.

[wendyweneki]

Hello and welcome also...if I had it to do over, I don't think I would have given Lena the Vetoryl. I wish I had found this forum before I let our vet put her on 30mgs...I would have had more time to research and learn, then make an informed decision on whether to treat or not...and I think I might not have. I felt rushed into making the decision to treat when I really had time to think about it.

How did Lena react to the meds? How is Lena doing now? This is very useful information. Thank you ... I think we are going to take our time in deciding what to do.

[Joan2517]

How did Lena react to the meds? How is Lena doing now? This is very useful information. Thank you ... I think we are going to take our time in deciding what to do.

She seemed to be doing good on 10 mgs, then after the first ACTH test, my vet upped it to 20mgs (10 in the morning and 10 at night) and after the next test 11 days later, he put her on 30. She was only 6lbs 4oz. I found this forum a few days after that. Even though the last ACTH test came back good, she just didn't seem to be getting better, she was still drinking a lot and peeing a lot, but we were dealing with that.

Sometimes she would seem like her old self and do the things she used to, but she was changing and she looked distant and confused a lot. I think the dosage was too high and then she started having trouble breathing. It could have been the Cushing's, but it just seemed to get worse after we increased the medication.

She started the Vetoryl December 11, I think and died February 19...they think she started throwing clots. With what I know now from being a part of this group, I would have kept her on the 10mgs for the 30 days that is recommended by the manufacturer. She had an adrenal tumor, so it might not have worked anyway, but she might have been more comfortable and I might not have lost her as early as I did. I'll never know...

I loved her with all my heart and miss her terribly. I wish I had been more informed so that I wouldn't feel like I made the wrong decision for my sweet little angel child.

[wendyweneki]

I'm so sorry Joan. Thank you for the information though. Panda Bear will be starting at 20mg and I am going to make sure that she stays at 20 for at least 30 days.

Sending you big virtual hugs through the Universe. Thank you for sharing with me - you may save Panda Bear's life. :) :)

[Emmierow]

Thank you all for your response to my post; since posting, Toby has been to the vet twice...he started passing blood in his urine but was otherwise unaffected by it. Of course it totally freaked me out and I feared the absolute worst. He's been on antibiotics almost non-stop recently for his bladder and has been given yet another long course, with a view to doing a bladder aspiration once they're finished so that they vet can get a sterile sample and see exactly what is going on.
I'm feeling worn out and depressed and BROKE right now. But I'm so grateful to have him on antibiotics and feeling settled. He's snoring his head off right now and can't see what the fuss is all about.
With regards to Vetoryl, the vet we saw last night wasn't pushing me to make a decision which felt like a relief. Coincidentally my order or flaxseed lignans and melatonin arrived from the USA yesterday and although the last thing Toby wants is more tablets shoved down his throat, i started him on the lignans last night. I know in my heart that I'm grabbing at straws here but such is my reluctance to use Vetoryl that I'm prepared to try almost anything else.
Thank you for sharing your stories and I'm sorry I've not posted his results yet- I got preoccupied by his latest infection and forgot to ask the vet while I was there.
Love and hugs and total empathy to every single one of you going through this right now.
Xxx

[Joan2517]

So glad he's settled for now...snoring, I miss that sound. Lee always snored. It used to lull me to sleep. If I didn't hear it, I would pat around the bed until I found her to make sure she was still breathing.

I hope the melatonin and flaxseed lignans work for Toby.

[Harley PoMMom]

Did Toby have the bladder infection when that ACTH stimulation test was performed? I ask this because this could of created a false positive result on the ACTH stim test.

[Emmierow]

I took the liberty of coping your post from another member's thread so we have all information regarding Toby in one place.....Lori

I'm interested in this thread as I'm having the same frustrating problem with my boy. It seems he's off antibiotics for a day or two and then starts peeing blood-tinged urine again or struggling to pass more than a few drops at an eye-watering time. The difference is I've thus far chosen not to treat his Cushings with conventional medicine. He manages well, apart from these bloody urine infections; the vet has said that they want to do a sterile aspiration (using a needle to remove urine directly from his bladder) in order to culture it and see exactly what bacteria is causing the infections. They also want to do a CT scan/ultrasound to see if there's another underlying cause. I don't want to use Vetoryl with Toby- it doesn't feel like the right treatment for him. He is extremely sensitive to medication and he is absolutely terrified of the vets. It took him days to recover from his ACTH testing (because he gets so stressed being at the vet, especially without me) and the idea of having to do this regularly is too awful to contemplate. I also am a single, self-employed, struggling home-owner and with all the vet bills I can't even afford to eat three times a day. Additional bills will bankrupt me.
So if anyone has any ideas re these recurrent UTIs then I'd also love to know. I don't want my beloved boy to suffer.

[Harley PoMMom]

When UTI's occur frequently an urine culture and sensitivity test is recommended and ideally a cystocentesis (sterile needle through the belly wall into the urinary bladder) is preferred, however the urine sample can be collected mid-stream in a dry, sterile container, when collected this way the urine should be taken to the vet within 1 hour and if this is not convenient than the sample needs to be refrigerated.

Has any crystals, casts, or stones ever been found in Toby's urine?

Hugs, Lori

[Emmierow]

Hi Lori,
So far all the vets have done is dip his urine samples when I have brought them in. In my heart I know something isn't right with his bladder/urinary system because of the frequent squatting but only peeing drops. In the mornings it seems worse and the only way to relieve him is to take him for a walk. Once he stops 'thinking about' peeing and just cocks his legs against few lamp posts, his urine flows freely. This is all very well, but yesterday we went for a 4.30am walk because he needed to go and couldn't in the garden. Anyway, I digress. So far we've just done dipsticks and he's been given Clavaseptin three times- we've literally just finished a two week course so I'm dreading every pee, watching for blood with bated breath. I don't really have the money for investigations but I can't let him carry on with this problem if I can help it. Tomorrow I will drive an hour to my vet (5 miles away but road works everywhere- nightmare) to drop off a urine sample and then I guess we book in his cytocentesis and ultrasound. They said they won't have to sedate hi
Which is a relief-'I can't put him through anaesthetic: he takes such a long time to recover from them. Gads, who would have a dog, hey? I just love this boy so much. I literally spend nothing on me these days- every penny goes on him in one way or another, despite not being on Vetoryl. 😁 xxx

[molly muffin]

I really wonder about a kidney stone with the not being able to go and causing a blockage. It can kind of swirl around if it gets trapped in there.

Most of us can relate. I always say that I work for mollys vet bills. It is what it is though.

Good luck tomorrow!

[Harley PoMMom]

Really sounds like to me that Toby has some type of stone formation in his bladder/kidney. My boy, Bear, had to have surgery to remove oxalate stones from his bladder twice. An X-ray showed Bear's stones and when they were removed they were sent out for analysis to see what they were made of.

[Emmierow]

Hi guys,
So Toby and I took a little drive to his least favourite place after his morning walk (the vets) but as a treat, I didn't make him leave the car- I just ran in with his morning pee (life is so romantic at the moment, hey? 😉) and off we went back home. We had to walk early this morning as I could tell he had been in the garden squatting but not able to pass any urine. Again, as usual, once out walking and lifting his leg it seems to come easily.
The vet called me an hour ago saying that there is less blood in his dipped sample today but it hasn't gone after two weeks on Clavaseptin. So he's booked in for his Cystocentesis and abdominal ultrasound Tuesday morning. I've asked that they don't sedate him- he's a lazy boy and has had an echocardiogram done without sedation in the past so if they gain his trust them they shouldn't need to this time. The vet prepared me for them finding prostate/bladder tumours which is already considered but still reduced me to tears on the phone. He's a lovely vet but can't handle crying women, bless him!! Of course as you guys have mentioned above, they might find stones. I suppose that would be the preferable option but I know it's not a simple removal process and will require surgery. And cushings' will make recovery/healing more complicated. I'm between a (bladder) stone and a hard place but I MUST stop myself from obsessing before Tuesday. I find myself bursting in to tears when I look at Toby or think about losing him and then I get mad at myself for crying while I still have him. What a waste of precious time with my boy,
To be seeing him through tears all the time. It's so hard not to cry when I know he's probably sore from all the peeing and I know what sort of issues we have to come. I'm rejecting all my friends' offers to go out because I want to spend all my time with Toby. I'm lucky that they understand how much he means to me. This just isn't a good time, is it? I'd rather be on here, reading about other people's experiences because I feel like it's only on this forum that people truly understand how it feels. Xxx

[Emmierow]

Really sounds like to me that Toby has some type of stone formation in his bladder/kidney. My boy, Bear, had to have surgery to remove oxalate stones from his bladder twice. An X-ray showed Bear's stones and when they were removed they were sent out for analysis to see what they were made of.

Can I ask, was Bear diagnosed with Cushings when he had the stone removal surgery? And what age was he - how was his recovery? If this is Toby's diagnosis then I'd like to know what I might expect.... Xx

[Harley PoMMom]

My Bear did not have Cushing's, Harley, he's my avatar, was the one with Cushing's.

Both times Bear did wonderful with his surgery and recovery, he was around 5 years old the first time those stones were removed and then 5 years later he had to have a 2nd surgery, those darn oxalate stones :mad:

[Renee]

My girl, who does have cushings, had stone removal approx. a year before her diagnosis. She had struvite stones. I'm not sure if there is a direct correlation to cushings, but I doubt it. A lot of dogs end up with stones / UTI's that don't have cushings.

Struggling to pee is something I would take very, very seriously. If a stone is floating around in there, it could create a blockage at any point, which can be life or death.

[Emmierow]

Toby is booked in for his abdominal ultrasound and cystocentesis on Monday- I changed it from Tuesday as I want it done ASAP- he had another tricky morning where it took a walk and some lampposts to help him pee. My dad recently had a prostatectomy and said he has the same symptoms- Toby always finds it hard to pee more than a few drops in the morning or if I haven't made him go and pee every couple of hours. If he holds it longer than 3 hours then he has trouble. With this in mind, I'm setting my alarm to take him out every night until his scan. He is on Metacam daily until then, also. He chased a cat today. This made my day- he hasn't bothered to do that for a while, love him.
I know there's little chance of the scan showing nothing. I don't know what I'm going to do in any of the scenarios really. Xx

[Harley PoMMom]

Let us know how yous make out with the ultrasound, wishing ya the best of luck, and remember we are here for you.

Hugs, Lori

[Emmierow]

Well that was a long and emotional day- Toby was at the vets for over 9 hours, which must have felt like forever as he hates the vets so much). He had a full abdominal ultrasound and cystocentesis plus full bloodwork done.
I am not treating his Cushings because I feel that his quality of life would be adversely affected by regular days at the vet. I also am struggling financially. Toby only really struggles with his excessive drinking and urinating/bladder infections so far - he doesn't have the extreme hunger, he has always been a bit of a grump on walks and has always suffered with skin infections and irritations. We have been so lucky so far, all things considered.
Today we discovered that, although his blood work was pretty good, he has multiple health issues. It's hard to pick the most significant issue but I would say it would be the mass that was discovered in his bladder. I have asked them to send the cells for analysis but it is clear that surgery won't be an option for Toby. This goes some way to explaining his recurrent bladder issues but of course Cushings clouds an easy diagnosis for even the most basic of health issues, let alone the whole myriad that my boy seems to have accumulated.
I think what we tend to do is try to control this disease- I've been so obsessed by his Cushings that alternatives hadn't really occurred to me. Our lives now are going to have to be about doing things that make us happy and about trying to remain pain free. I was pleased to hear that Toby's liver was in great condition and functioning well, so daily Metacam is an option for him: meanwhile I will continue with his supplements and his lignans and melatonin because they simply can't do him any harm at this stage.
He is comfortable, happy to be home, has a full belly and is sleeping soundly now. It's time for us to take a deep breath and just relax now. Xxx

[wendyweneki]

WOW!!!!! That was emotional for me just reading it - I can't imagine what the two of you must be going through. Sending you big big hugs and sending Toby Virtual Forever Bones.

[molly muffin]

Oh my goodness. Well he might not even have cushings, with the mass in the bladder. That could cause a whole world of other issues and high cortisol is definitely one of them. The body reacts by producing higher amounts of cortisol and it is probable that this helps with the pain naturally to.

I agree, I wouldn't bother with cushings treatment with this going on and maintaining a good quality of life and enjoying every minute of it, is first and foremost what my concern would be.

Sending you lots of warm support. Let us know how things are going.

[wendyweneki]

how is Toby doing? How are you doing? Thinking of you both and sending you my warmest, kindest thoughts.

[Emmierow]

Hi guys, how lovely to pop on here during a mid-walk break and see you've been in touch :-) Thank you.
You know, I was just wondering myself whether the Cushings diagnosis may have been wrong, and instead the excess cortisol may be related to the bladder mass they found. Would this cause all the same symptoms as Cushings? Though his only real symptoms are polydypsia and polyuria. He has always been slow on walks and had skin issues.
Toby has had a few good days so I'm just thankful for that.
The daily Metacam has so far relieved any cystitis pain- in fact, it's just ME who's suffering now as I don't seem to be able to switch off. I'm constantly anxious that I'm going to lose him any minute, even though he's happy and chilled right now. I've got to try and figure out a way to stay calm when he is calm because I won't be doing him or myself any favours by being so sad all the time.
Toby and I wish you all a wonderful and pain free day, wherever you are xxx