New to forum... difficult time

[Kevin]

Hi everyone.

Stumbled onto your forum, honestly cannot recall exactly where. i think I saw it mentioned in one of the countless product reviews I've looked at. But thank you for letting me post. We're kind of in a tough spot.

Cooper is our beloved Pit mix. 10.5 yrs old. 70 lbs. About 8-10 months ago we noticed big water increases, lethargy and some hair loss. He had a couple UTI's and it took me about 5 min of Google searches to key into Cushings. Nevertheless our Vet discouraged the Cushings Test, saying "it will probably just come back negative." She did tell us an ultrasound was our next move. So we went ahead with an Ultrasound. Nothing extraordinary. They did tell us no obvious masses or tumor on the adrenals but they were maybe just on the edge of being too large? Another 1-2 months passed, symptoms worsened and we pushed for the test. Positive for Cushings. I apologize, I don't have much data on the positive test. He was at the Vet for most of the day for the test.

So following the positive test, the Vet immediately started Cooper on Vetoryl. It wasn't good. We honestly thought it was killing him. We actually misread the dosing-thankfully(30mg 2x per day) and were only giving him 30mg once per day. Lethargy was off the charts, hind leg weakness was awful. It DID slow down the water intake but not in a healthy way. The meds just turned him so lethargic. The Vet took Cooper down to 10mg per day and even that didn't help. He just doesn't seem to tolerate Vetoryl. When we took him in for his first round of bloodwork, she took him off the Vetoryl. I'd guess we attempted Vetoryl for close to a month with the different doses.

So following the Vetoryl defeat, we started searching for holistic options. Stumbled onto alot of positive reviews of Lignans and Melatonin. We've been giving Cooper Lignans and Melatonin for about 3 months now without any real improvement. In fact, he's steadily regressed. He's now battling another UTI and on antibiotics for 3 weeks. So some of the regression may be due to the UTI as I know that can really be hard on a Dog.

Anyhow, here we are. We know our options are running out and we love Cooper. Girlfriend and Vet want to try an even smaller dose of Vetoryl (5mg?) and attempt it again. Maybe the side effects he was having were something we just needed to work thru? I've been kind of looking thru more holistic options... I see a number of them online and can't help but read the optimistic outcomes of everyone else, wishing they could be us. I see a number of supplements using Ashwaganda / Astralagus and other herbs but no clue if they work well.

I'll continue to search thru past threads but while I'm doing that, I'd love to hear any thoughts other might have. This is an awful disease and my heart goes out to others facing it. We usually cry ourselves to sleep as we have for about 8 months now.

thanks-Kevin (from MI)

[labblab]

Hello Kevin! I just now happened to be on the forum, right as you posted, so I’m very glad to be able to approve your membership and to welcome you to our family. I’m very sorry, however, for the problems you’ve been facing with Cooper. There’s nothing more upsetting than helplessly watching your baby suffering, that’s for sure :-((((((. A lot of us have been there, and we’ll now do our best to try to answer your questions and to offer our suggestions.

First of all, it’ll help us a lot if you’re able to get copies of the written ultrasound report, the actual results of the diagnostic Cushing’s test, the monitoring cortisol test when you stopped the Vetoryl, and any other recent labwork. As Cooper’s owner, you’re entitled to those results, and I don’t know of any reason why your vet wouldn’t want you to have them in hand. From this point onward, you’ll want to request a copy of any additional testing so that we can continue to review the results with you.

From what you’ve described, I have no reason to doubt that Cooper does suffer from pituitary Cushing’s (apparent enlargement but no masses were seen on his adrenal glands). I’m guessing that the diagnostic blood test was a Low Dose Dexamethasone Suppression Test (LDDS), since it takes eight hours to complete. And after having started Vetoryl, the cortisol monitoring test was likely an ACTH stimulation test. But it will help us fit the puzzle pieces together if we can read the ultrasound report and see the actual test numbers. Additionally, Cushpups typically exhibit certain other abnormalities on their bloodwork such as elevated liver enzymes (especially ALP), high cholesterol, and certain alterations in blood cell levels. If Cooper shares those same abnormalities, a valid Cushing’s diagnosis is strengthened.

Turning to treatment, yes, it may have been the case that the Vetoryl dose was just too high for Cooper. Recent research has shown that larger dogs may often be more sensitive to the medication than smaller dogs, thus requiring much smaller doses than might be expected initially. One of our staffers here, Joan, has a big boy who has ended up tolerating no more than 5 mg. of Vetoryl after a lot of experimentation, too. So as I say, Cooper may have just been overdosed and could do better on a lower dose.

It’s also possible that, for whatever reason, he doesn’t react well to the Vetoryl. There is another medication, Lysodren, that is also proven to effectively lower cortisol levels. It was the primary treatment here in the U.S. prior to the introduction of Vetoryl, and especially older vets may still be familiar with its use. So if Cooper truly can’t tolerate Vetoryl, then Lysodren may be a viable option to try. Another medication, Anipryl, has been prescribed at times through the years, but unfortunately it is effective in lowering the cortisol in only a small percentage of dogs whose pituitary tumors are located in one specific area of the gland.

Aside from these prescription medications, I’m afraid that I’m unaware of any OTC herbs or supplements that have been clinically proven to effectively lower cortisol. We’re very familiar with melatonin and lignans as a treatment for dogs who are suffering from certain elevated adrenal hormones *other* than cortisol. Unfortunately, any modest cortisol-lowering effect that those supplements may convey is insufficient to effectively treat the high level of circulating cortisol associated with genuine Cushing’s.

Going full circle, it may well be the case that Cooper will finally show some improvement on a much smaller dose of Vetoryl. But as I say, it’ll help us a lot if you can get those test results for us to look over. And in the meantime, once again welcome!

Marianne

[Kevin]

Thank you so much Marianne for your kind reply. I've obviously come to a good place. Your comments on maybe needing an even smaller dose of Vetoryl are really inspiring. We had kind of written it off as an option. Would love to see it work. Will work on some of the results from his testing. I sincerely appreciate your reply. We've been kind of lost in this for awhile.

[labblab]

Oh you're so very welcome, Kevin! The Cushing's journey has presented a lot of questions and hurdles for many of our parents here, so our hearts definitely go out to you. The worry and the uncertainty can feel sooooo overwhelming and exhausting. I've found for myself that just being able to talk things over can help me a lot, though, so I hope that we can offer that same support to you.

I'm going to quickly repost a reply that our staffer, Joan, posted this week to another new member. Her big guy, Gable, weighs close to 80 pounds and was initially started on 40 mg. of Vetoryl. That subsequently proved to be too much, though, and here's what she wrote about lowering his dose:


I can't remember how long he was at that dose, I would need to go back and read his thread. I know we actually lowered it to 30 at one point. Then about 7 or 8 months later I noticed an increase in drinking again and was going to raise it back, but he just didn't seem himself, so we did an ACTH test and it had dropped so low we had to stop. They also found that his thyroid meds were too high which could have contributed to it. I am so glad that I didn't raise it. We started back at I think 10 after a few weeks, but it was still too low, so we went to 5mg. He's been on 5 for at least a year, maybe more and it was going well, but I need to get him tested again because his drinking has increased, he's panting like crazy and his food aggression has gotten out of hand. He may need to go back up to 10, but I'd rather his cortisol is high than have to worry about an Addison crisis. He very sensitive to the Vetoryl.

I'm waiting for a check to clear and then I will have a full workup done, and I think a spa day, nails clipped and medicated bath (he has allergies and gets hot spots that get infected). Before Vetoryl he had lost most of his fur around his lower back. After being on the meds for a about a year, his fur came back beautifully and has held steady at the 5mg. He's a big boy and I just can't get him into the tub or shower without hurting my back. I bought a child's pool a couple of years ago thinking that would work...nope!

He is 12 years old and is starting to have the back end weakness and because he's so big, getting up and down is starting to be a problem for him, but he never complains and still tries to do whatever our other dogs do. Because of this forum, I know more than I did with my precious Lena. I didn't rush into treatment with Gabe the way I did with her, and I told the vet what dose we would start him at. Luckily the vet I work with now listens to me and works with what I want. He has also learned a lot from what I bring to him from what I learn here. It's been better this time around...

I'm sure Joan will soon be by to respond to you directly, but I wanted to give you this preview in order to give you some hope that Cooper will be able to find some relief from the Vetoryl, but just at a lower dose.

Marianne

[Joan2517]

Hi and welcome to the forum. Yes, Cooper may need a lower dose. I think others have gone even lower with the compounded Vetoryl. We were actually going to try that if the 5mg turned out to be too much. As Marianne quoted from my post, I think he either needs an increase or it might be too low again, although he is eating and not really lethargic. He does lay down a lot, but he's a big boy and it's getting harder for him to stand for long and get up once he's down...but if he hears the refrigerator open, he gets up and goes at full speed!

Getting all those test/blood work results is important. Marianne and others on the forum are really good at interpreting the results. I hate to admit it, but I still can't figure them out after six years of all of this. As Marianne said, those belong to you and your vet should not have a problem giving them to you. I always ask for mine to be faxed to me now. Way back with my Lena, I didn't get a copy of the ultrasound that confirmed the Cushing's and after three years of asking for it I gave up. Now I get the results as soon as testing is done with all of my dogs for anything they go in for.

I hope this has been helpful. We all know how upsetting and heartbreaking this disease is. Watching the changes our babies go through is pure torture. My son came to visit last week and couldn't believe how old Gable looks since the last time he saw him which I think was Xmas.

Get those test results and let's see if we can help you through this...

Joan

[Jenbubs]

Hi Kevin!

My dog Eli is 90lbs and we had a rough time getting his dosage right at the beginning they prescribed 120mg and it nearly killed him. As Marianne and Joan have mentioned-for whatever reason, larger dogs do much better with lower dosages so it is worth trying lower and stair-stepping up as needed.

Also, Eli had terrible muscle wasting in his hind legs that I have only now found something that helps him. (MYOS Canine Muscle Formula)

I hope this helps and we have all been in your shoes so I feel your pain!! Those first few months after Eli's diagnosis are like a blacked out period of my life because I was so helpless.

Jenni

[Kevin]

Thanks Joan, Jenni and Marianne. Vet agreed to move forward w/ getting him back going on 5mg of Vetoryl and we're super hopeful (though guarded) this week. If anyone believes in prayer, please cut them loose ;) Just really hopeful he tolerates the 5mg ok. We're going to start the 5mg with his breakfast. Still working on the numbers for you from the tests. its a collaborative effort on Cooper with my girlfriend and she is technically his guardian so I have to be sensitive there. We've been thru alot with this process and telling her "I found this website that is going to help us...." admittedly made her skeptical. I've brought forward so many "hey how about we try this (Lignans, Melatonin, Droppers w/ miracle herbs)" and she is understandably tired and sad. Hope you understand there. But I did prove to her that some larger Dogs need the smaller dose. So thank you again.

[labblab]

It’s so good to hear back from you, Kevin, and I’ll definitely be sending healing prayers your way! I surely do understand all the stress and uncertainty that you and your girlfriend have been dealing with, and that can definitely be rough on a relationship! My husband and I are polar opposites when it comes to coping with stress, ourselves, so I’ve learned that it’s really important for us both to have *other* people to talk to when we’re under pressure. And if I can be a sounding board and support to you right now, that’ll be my way of “paying it forward” for all the help I’ve always gotten from our K9C family here, myself.

So truly, good luck with restarting the Vetoryl, and please do let us know how things are going.
Marianne

[Kevin]

Thanks Marianne.

One area that concerns us a bit is the UTI that Cooper is currently being treated for. I believe UTI's are common for Cush Dogs so he can't be that unique. UTI's were the first flags we had 8 months or so ago. Being a male Dog, my antennas immediately went up when he got his 2nd UTI. This is now his 3rd or 4th and he's on a 3 week course of antibiotics. He had a culture test this go around to try and peg the specific bacteria?-- excuse any terminology that may be off here.

Anyhow, we THINK the UTI may be clearing as he seemed a bit less uncomfortable though still living w/ the Cushing symptoms (crazy thirst, peeing, weakness etc...) but we have felt like the UTI just compounds his Cush symptoms. My thinking is we have to get his cortisol under control to have any prayer of stopping the UTI's. I'd like to kind of hear your thoughts on this as I'm guessing he's not the first to battle UTI's w/ Cushings. The VET seems ok w/ getting the lower dose Vetoryl going while taking the antibiotics but we kind of wondered.

Oh, Jenni, thank you for the MYOS rec. Aside from the water intake, and maybe even more heartbreaking has been the loss of muscle esp in the hind leg region. It is absolutely excruciating to watch a Dog you love with every ounce of your being get stricken down. You would run thru a wall to stop it.

Would love to hear thoughts or similar positions others have been in w/ regards to UTI's.

Update -- Cooper got his first 5mg dose tonight w/ his dinner. We debated waiting until the morning but could not find a reason to wait. Prayers are flying right now that this helps him.

thanks Again everyone.

[labblab]

Surely hoping that things will be going well for Cooper. As far as the UTIs, yep, they are a common occurrence for Cushpups and your vet is correct that getting the cortisol level under control can be central to lessening or halting recurring infections. And I do think it’s a very good thing that a urine culture was done this time around so that the specific type of bacteria can be directly targeted with an effective antibiotic.

In terms of timing of the Vetoryl dose, if Cooper is only going to be dosed once daily, it actually is recommended that he be given the medication in the morning along with breakfast. There are two reasons for this. First, since the medication is generally most active in the bloodstream between 1.5 and 12 hours after administration, most owners want the benefit of the treatment to be greatest during the day when the dog is active rather than at night when the dog is sleeping. Secondly, monitoring ACTH blood testing should be done 4-6 hours after administration of the medication, so if the the dog is only dosed at night, the monitoring can’t be done at the correct time.

It certainly shouldn’t hurt Cooper to have been given the med last night. But going forward, if he’s only going to be dosed once daily, I think you’ll want to shift to the morning for your regular pattern.

Once again, good luck!

[Kevin]

Don't want to get too excited but things are FINALLY giving us some hope. I'm a "HOPE" guy so I tend to get too hopeful but I don't care, I'm going with it...

Cooper seems to be tolerating the 5mg of Vetoryl ok. We're on day 5 now and he is eating well and showing a few signs of having his spirit improve. Water intake is still really high but he slept thru most of the night last night. He hasn't done this in months.
Honestly, our real hope w/ the 5mg was just that he could at least tolerate it. He actually has an ACTH test scheduled in a couple weeks. I learned that when things went bad on his first round of Vetoryl, the Vet didn't even do the test and just wanted to get him off it (the 30mg round and some 10mg dosing). Our only discussion now prior to the ACTH is whether we try to inch him up to a 2nd 5mg pill per day (total of 10mg per day) if clinical signs are not moving along... or just stay at the 5mg and wait for the test.

Thank you! I'm not sure we would have even tried the 5mg had it not been for this site. We had kinda written it off due to the initial trouble. Its WAY early to get too happy but at least there is a glimmer of light now when a week ago there really wasn't any.

[labblab]

Hi again, Kevin, and truly I'm feeling hopeful right alongside you! Under the circumstances, I think your report is definitely a positive one :-))))

As far as increasing the Vetoryl prior to the ACTH testing, though, I would not recommend doing so. I know how hard it is to stick to the status quo when you're hoping so desperately for more dramatic improvement quickly. But here's the thing. It is not uncommon for cortisol levels to continue to drift downward during the first few weeks of treatment, even when the dose remains unchanged. For this reason, the manufacturer generally recommends holding off on increasing a dose until a month has passed and a dog has presumably stabilized at that given dosing level. At that point, a more informed decision can be made in terms of the drug's effect and the desirability of an increase.

It is true that exceptions are sometimes made if a dog has been started at a very low dose and there has been very little symptom resolution at the 14-day testing mark. However, given Cooper's specific history, I would be wary about increasing his dose at all during this first month. At a minimum, I wouldn't feel comfortable increasing it until that first ACTH test confirms that his cortisol level remains within a range of safety.

Again, I know how much you are hoping to see him feeling better. MUCH better. But let's celebrate even these first few baby steps while minimizing the risk of backsliding again with an overdose. I must repeat that I am not a vet. But this would be my recommendation if Cooper was my own.

Marianne

[Kevin]

Thank you so much Marianne. Yes, we will hold on the 5mg. We don't want to do anything that disrupts the positive start on the lower dose.
thank you again!

[labblab]

Hey Kevin, I just now saw your note on Betsy’s Mom’s thread reporting that you’re still not really seeing any improvement in Cooper. I want to talk a little more about the possibility of increasing Cooper’s trilostane dose after his monitoring ACTH test. If you’re still not seeing any improvement at that time and his cortisol level comes back in a relatively high range, it may be reasonable to increase his dose a bit. I don’t want to seem like I think that shouldn’t even be considered. So let’s see how the testing turns out and then go from there.

Marianne

[Kevin]

Thanks Marianne. I have a sneaky suspicion that his UTI just isn't clearing. He has another few days of antibiotics to complete the 21d cycle (Doxycycline). Along with his ACTH, he'll get another urine culture to see if the infection is gone. My gut and visual cues are just telling me his infection is just not going away. UTI symptoms obviously just compound Cush symptoms so it makes it hard to assess. Lethargy, accidents, drinking... obviously all compounded with a UTI. So we've got that symptom overlap that could be going on which makes it very hard to assess the Vetoryl success.

Do you have any thoughts on the UTI? I should be clear, I can't say for CERTAIN his UTI isn't clearing. It may be. Haven't seen any blood in his urine nor any horrible smell from it. Just what I mention above.

And yes, regarding the increase to Vetoryl, we're kinda thinking everything hinges on that ACTH test. Good news is that he's still eating and taking the Vetoryl.

[labblab]

Hey Kevin, no I’m afraid I can’t add much to the UTI picture that you don’t already know. You’re so right, though, that the overlap of symptoms is a real bummer from a diagnostic standpoint. But hopefully as Cooper’s cortisol lowers, those UTIs will come under better control, too.

[BetsyFoxhoundMix]

Kevin, as a human nurse practitioner, just adding a couple comments but you’ve probably already thought of this. If the dog is having a urinary track infection at the moment I believe any testing for cortisol levels might be thrown off? The other thing is if you are using any holistic supplements or any supplements at all be sure your doctor knows about those because they could potentiate or lessen the effect of vetoryl ( just my guess as a human nurse practitioner, I am not a veterinarian, but we are constantly looking for what supplements or meds are affecting other meds.) good luck, I am on my second and third, of four pitbull‘s total Who have lived in my family. I adore them and pit mixes. ( The first died at age 12 of a brain tumor, the second and third are three and five years old, the fourth was a homeless pitbull I took in during Covid who died after seven months here. She was very old and very sick.)

[Kevin]

thanks guys. Having a hard day. Noticing alot of circling the last few days with Cooper which leads us to think things may be evolving into a neurological deal w/ the Pituitary tumor growing. We just can't win and starting to fear the worst.

BM, we stopped all holistic stuff completely minus a cranberry supplement the Vet actually gave us with hopes it may help with UTI's.

Not in a good place to type much more but I thank you all for the support.

[labblab]

Aww Kevin, I’m so sorry to hear about the circling and I understand why you’d be scared and worried right now. Whenever you feel like writing more, though, we’ll be right here for you. When we love them so much, it’s torture to see them doing poorly, and to know they can’t talk and tell us what’s wrong. But you can always talk to us, whenever it feels like it might help.

Sending big hugs to Cooper, you and your girlfriend.
Marianne

[Kevin]

So we got Coopers two week test results, Marianne. Well, we got them informally over the phone from the Vets office. These are quotes from the Vet so I have absolutely no clue what they mean. "His first reading was 2.9 and the 2nd reading was 8.7 which is perfectly in the range we want to see (1.5-9.1)" This was the quote from the Vet so forgive me for not having more information.

Sadly, his clinical symptoms are not improving much. His lethargy, muscle weakness and neurological symptoms aren't good so we're struggling to stay optimistic. We're only a bit over 2 weeks on the 5mg Vetoryl dosage. Vet wants to stay on the 5mg and refer us to a specialist to maybe assess the neurological stuff. I know radiation to the Pituitary tumor is a treatment option for some dogs but no clue if he'd be a candidate. She seems to believe some of the clinical stuff just takes more time so we'll keep at it.

We also think he still has the UTI which we KNOW wreaks havoc on his behavior. He's going to get another culture next week. If his Cortisol is finally getting under control, we might have a prayer to get the UTI's to stop.
So thats our sad update but I guess at least maybe the Cortisol is showing some improvement? hope those numbers make some sense to you.

thanks so much.

[labblab]

Hi Kevin, I’m also sorry that Cooper isn’t doing better than he is right now. I was so hoping that you’d start to see some definite signs that the tide is turning. But at this point, I agree with your vet’s assessment. Cooper’s 14-day ACTH results are indeed right where we’d want to see them at this first screening, and I wouldn’t want to increase his dose right at the moment, either. However, if his test results after a month are not much lower and he remains symptomatic, I do think an increase would be in order and that may well be the “push” he will need to benefit from more relief from his conventional Cushing’s symptoms. Here’s a link to a publication by Dechra that should answer most all of your questions about their recommended treatment and monitoring protocol. If you scroll down to page 11, you’ll find a purple monitoring flowchart that will explain those cortisol results. As you’ll see, Cooper is currently well within the “safe” range at the two-week testing mark. However, if you keep tracing down the flowchart, if he’s still suffering from significant symptoms at the end of 30 days, his single daily dose could be increased or a second daily dose could be added. So as your vet says, there’s definitely still hope that his conventional symptoms will improve more, given some time and/or a possible dosing increase. Here’s that link:

https://drive.google.com/file/d/0B5RToo4GC5HPSlBUemlDZ09oejQ/view?resourcekey=0-pdT_sksIrlSFNlHpBdsSAA

As far as the neurological issues, as you already know, that is a wildcard. I certainly can’t argue with a neurological consultation. I guess the question would be timing. For me, living with uncertainty can be excruciating. If you’re like me, you might want to launch into a referral now. In the alternative, you might want to go ahead and let the first month of treatment play out, both for the benefit of seeing if things improve with hopeful resolution of the UTI and a longer time on the trilostane. Heck, maybe even the antibiotic that he’s taking for the UTI could be responsible for some of his ill effects. You can Google the medication that he’s taking and see if there are possible ill effects. My Lab girl periodically takes metronidazole (“Flagyl”) for recurring GI bouts, and I’ve become aware that it can sometimes cause neurological problems when given at high doses or for a long time. So that’s just a thought I’ll throw out there.

Anyway, we continue to send our well wishes to you all. Hang in there, Kevin, although I know it’s hard to do right now. I’ll surely be hoping a bit more time will bring some improvement.

Marianne

[labblab]

Hi again, Kevin. I wanted to let you know that I’ve seen the note you posted on “Mae’s” thread for her girl, Siouxie. I’m so sorry to learn that Cooper has been diagnosed with two enlarging pituitary tumors — as though just one would not be enough. Again, I’m so sorry. Since you’ve now been in touch with two fine vet schools, I know you’re getting expert advice. But I also know that the finest advice cannot change your deep sadness over the diagnosis.

If there’s any way in which we can be of of help or support to you, please do let us know. No matter what, please know we’re thinking of your family and sending you our wishes for strength and comfort at this most difficult time.

Marianne