New here and new cushings diagnosis, questions!

[AliSa]

Hey everyone, I have a 13 year old Chihuahua named Tyson. I took him to the vet 9 or so months ago bc he was acting strange, drinking excessively and peeing on the floor a lot. The vet dismissed it as old age but I insisted he check him for diabetes, which he did not have. Went back to the vet when he was crying out in pain, said it was arthritis. Something wasn't sitting well w me, so I took him to another vet. They figured out he has cushings. They put him on Vetoryl but, prior to starting it he started this aimlessly wandering and getting stuck in corners. I mean all day, all night wandering. He's been on Vetoryl for 11 days, no good signs. And the wandering has gotten worse. And he is not even close to who he used to be. He's lost a lot of weight and it's almost as if he doesn't understand that he needs to eat. It's so sad bc he is just a shell of a dog who constantly walks/ gets stuck in corners. So I took him back to the vet and they put him on selegeline for the wandering but also on the Vetoryl. I ordered the selegeline but, haven't gotten it yet. I have searched and searched and can't find any info on the combo of these two medications. And it sounds like if the selegeline doesn't work; I'm out of options. Has anyone had experience w these to rxes together ? Or any other methods that have worked for their dog with the same symptoms? Anything is appreciated, it's breaking my heart to see him this way.

Thanks so much.

[labblab]

Hello and welcome to you and little Tyson, although I'm surely sorry for the problems that have brought you to us. First of all, if you can get copies of the actual test results that accounted for the Cushing's diagnosis, that will be a big help to us. Typically, one of two different blood tests are used: either an ACTH stimulation test or a LDDS (Low Dose Dexamethasone Suppression test). Additionally, most Cushpups exhibit some other abnormalities with their bloodwork or urine analysis. So step one will be to request copies of Tyson's test records.

However, assuming the Cushing's diagnosis is correct, this is the situation. The disease is caused by either a tumor on an adrenal gland in the abdomen or by a tumor on the pituitary gland in the head. By far, pituitary tumors are the more common cause. For most dogs, these tumors remain microscopically small. But for some dogs, the tumors enlarge and end up placing pressure on other areas of the brain and this can cause the very same symptoms that you are describing. Unfortunately, the only way to know for certain is by conducting expensive imaging of the head -- either a CT scan or MRI. However, if Tyson's Cushing's diagnosis corresponds with a pituitary tumor, you can have a fair degree of certainty that this is the problem.

If so, continuing the Vetoryl may not be a great idea. Even though the high cortisol in the body may be causing other problems, it may actually be putting somewhat of a lid on the inflammation in the brain. So, ironically, by lowering the cortisol you may see a worsening of the neurological problems. In this situation, we have seen some specialists who do continue with the Vetoryl, but who also add supplemental prednisone in controlled doses in order to help with the brain inflammation.

If you can handle the excessive thirst and urination a bit longer, I'd be inclined to talk with your vet about discontinuing the Vetoryl for the time being. The selegiline works in a different manner and probably would be OK to start. However, overall, I am surprised your vet has not mentioned the possibility of an enlarging tumor to you and I would want to discuss this possibility with him. Unfortunately, there is no easy treatment for this if it is what is wrong. However, radiation of the head can be considered in order to reduce the size of the tumor, and this is something we can talk about more.

But going full circle, let's find out more about the Cushing's diagnosis itself. Also, can you tell us how much Tyson weighs, and also what dose of Vetoryl he is taking?

Marianne

[DoxieMama]

Welcome to you and Tyson, though I'm so sorry to hear of how he is doing. I don't have any experience or knowledge about the selegeline, so can't help with that. One thing that jumped out at me in your post is this:
He's lost a lot of weight and it's almost as if he doesn't understand that he needs to eat. If Tyson is not eating normally, then I wouldn't give him any more Vetoryl.

Do you have a follow-up ACTH test scheduled with your vet? That needs to be done, along with electrolyte testing, to be sure his cortisol levels don't go too low. I'm not suggesting that is a problem now, just want to make sure you know about it. :)

Is his drinking and peeing any less since starting the Vetoryl?

Shana

[AliSa]

Thanks for the responses guys. I'm sorry I didn't say my vet did talk to me about a pituitary tumor, a very large one. She said MRI would be a way to be 100% and also, that there is a place in Cali that operates (w them living only up to maybe * a year after), she said some places do radiation but, they don't and to me it didn't seem like that was a super positive route. So that's why she suggested the selegeline (in addition to the 10mg of Vetoryl he takes 1 x per day). I will email them about getting the results of his test. She told me his cortisol levels were quite high. (They did the test where he is there for 8 hours) he is still peeing on the floor; which is easier to deal with then his neurological symptoms, the wandering and the crying in corners all day and night is what's the worst. I give him a mild sedative before bed currently to help him relax. But, he just looks at me and sometimes it's like he's looking at me like hey mom! Others it's as though nothing is there. He's been eating better since I got A/D food that I mix w his dry food. And every once in a while I will get him grilled chicken to mix in. He weighs 5.6 lbs; he's always been a fat 9 lb boy so , that's tiny for him. Again, thanks for the responses. I'll get more info from the vet.

Edit: I don't have the f/u test scheduled yet. The last time I went (2 days ago) they switched him and added this other medication. I supposed next week is when I'll need to go back. I was going to call after he got on his other medication.

[labblab]

Thank you so much for this additional information. It definitely fleshes out the picture for us, and from the sound of things, it was the LDDS that was performed to diagnose the Cushing's (8-hour test).

I am also relieved to hear that your vet is knowledgeable about the possibility of an enlarged pituitary macrotumor. As it turns out, one of our members here was the very first patient for the experimental California surgery. Here's a link to "our" Lucy's story!

http://dogaware.com/articles/newscushingssurgery.html

But it is true that radiation remains the more readily available treatment. Historically, the standard protocol involved a dozen treatments spaced over the course of a month. However, some centers are now offering treatment that involves only a couple of sessions. There are definitely pros and cons involved with deciding to pursue the therapy, however, and typically it does not provide a permanent cure. We can definitely talk about that some more if you are interested, though, since we have had members here who have successfully pursued radiation as well.

I do have just one concern that I want to mention about Tyson's Vetoryl dosage. Given the amount of weight that he has lost and his overall demeanor and appetite issues, I would feel much more comfortable if he was being started out on only 5 mg. daily instead of 10 mg. In the past, initial dosing recommendations were higher. However, the majority of researchers and Cushing's specialists are now recommending that dogs not be started on doses that exceed 1 mg. per pound. Vetoryl is available in 5 mg. capsules, and given Tyson's weight of 5.6 pounds, I would not want to be dosing him any higher. You certainly don't want to add low cortisol or an electrolyte imbalance into the mix, on top of everything else. If he continues on the 10 mg. capsule, you definitely don't want to wait any longer than two weeks to perform the first monitoring blood testing in order to check the degree of adrenal suppression.

Marianne

[AliSa]

Hey, I emailed the vet and they forwarded me the test results. It says pre dex: 5.5
4 hour dex: 5.5
8 hour dex: 4.9

And that's really all it has. I saw that less than one is normal so, I take it these are high numbers. I can talk to her about additional blood tests but it seems like she is trying to get his neurological symptoms under control. I am not sure how I feel about radiation, he is already so miserable. I would have to read more on it. The vet did say he is progressing more rapidly than she has seen since he has started the aimless wandering, circling and getting "trapped" in corners. Also, since he has zero interest in anything. Has anyone else had a dog that had these symptoms, along w the excessive drinking, urination; that had a medication that actually helped with that? It's hard to see him like this and it's difficult to know how much to put him thru as far as treatments. Thanks so much for the responses.

[labblab]

OK, yes, those results are consistent with Cushing's. However, we can't tell from this test whether Tyson suffers from a pituitary vs. an adrenal tumor. Both types could produce results like this, although actually more often this profile would occur with an adrenal tumor. However, the neurological symptoms do point to abnormal activity in the brain.

With sadness, I must tell you that I confronted a similar situation with my own Cushpup, and that's why so many of Tyson's symptoms sound very familiar to me. You can read our story here, along with summaries from several other members who also faced macrotumors:

http://www.k9cushings.com/forum/showthread.php?t=3567

I don't tell you all this to discourage you, but rather to offer you our strong support in the event this turns out to be what you are facing. You won't be alone, no matter what decisions you end up making.

Marianne

[AliSa]

Thank you so much, I will read thru that. It helps having other people that are dealing with/ have dealt with this as well. My sweet boy has been with me thru so many things, and I want to do right by him by doing what's best for him. It's so hard to know what's the right decision, since they can't tell us.

[judymaggie]

Welcome to you and Tyson! You have received excellent guidance already and I am not personally familiar with macrotumors. That said, I want to mention something else that came to mind immediately as I read about Tyson's symptoms and that is "Canine Cognitive Dysfunction (CCD)". Here is a link to symptoms as well as other info:

http://dogdementia.com/symptoms/

Selegiline is the primary medication used for treatment of CCD so you are already doing one of the primary treatment options. There has been another option, Novifit, but, unfortunately, the manufacturer stopped producing it several months ago. I continue to check to see if it is on the market again.

[AliSa]

Yes, I read up some on this and am seriously hoping that it's Ccd and just coincidentally happened around the same time as his cushings diagnosis. I am waiting for the selegeline to get sent in the mail since no pharmacy seems to keep it in stock. Crossing my fingers it works and Tyson gets a little more to normal( even if normal is just a grumpy old man)

[AliSa]

Hey everyone, I took Tyson in to another vet. They did X-rays, blood tests, urine analysis. 600$ more later ...They kept him on the medicine he was on and looked at the other vets notes, and tried to get me to do more tests. Meanwhile, Tyson has shown zero signs of improvement and is getting worse and worse. When he looks at me, I'm not sure he is really even all there. His wandering is terrible and he's lost more weight. Does anyone have any other suggestions?? I feel very lost.

[labblab]

Has either vet performed a blood test specifically checking Tyson's cortisol level since beginning the Vetoryl? I believe he has been taking the medication for three weeks now, and really, at a higher starting dose than most specialists would recommend. As I wrote earlier, lowering his cortisol too far can make things worse for him, and even become life-threatening. If you plan to keep him on the Vetoryl, you really need to have a monitoring ACTH stimulation blood test performed. Given the $600 you just spent, I am really hoping that test was included. Can you please request copies of all the test results so that we can see what has, or has not, been done as well as the actual numbers?

Thanks so much!
Marianne

[AliSa]

So I assumed that's what they were doing (the second vet); but she had me spend that money on god knows what and still said she needed to do that ACTH. I told her no more tests until she speaks w other people regarding Tyson bc I have spent 1200$ in 30 days with no definitive answers and I couldn't believe she didn't check his levels. His wandering started before he ever even got on the Vetoryl. And nobody can figure out why. So I gave her the weekend to discuss it with an intensivist bc I'm at the end of my rope.

[Joan2517]

The ACTH is very important if Tyson is still on the Vetoryl. You don't want to fool around with that.

[AliSa]

I'm aware. But like I said. I took him to the vet with all his records and the test wasn't performed. What am I supposed to do? I'm not a veterinarian. And I took him and trusted them to do the necessary tests. Not bloodwork without. It makes no sense to me why she didn't. But she drained my account in the process. I don't know what you guys do for a living but most people don't have over a thousand dollars to keep spending with no answers. I came here to see what people's experiences were bc the 3 vets I have taken him to don't know. I am literally doing everything I can for him. I get the test is important but, it's not my fault she didn't do it. She said she was doing all these tests, I assumed she was doing the proper things. I just found out Friday it wasn't performed. Thanks.

[Joan2517]

Have you tried the Care Credit? I don't know what I would have done without that. The first night my Lena was admitted to the Emergency Clinic, after spending at least two thousand for the testing for Cushing's and then the medication and monitoring, they wanted me to write a check out for another $2300. I said sure, I'll write it, but don't try to cash it...I didn't have it.

They put me on the phone with the credit card company and I was approved for like $3400. The next night we were back in again, and another $1000, and that night she went into cardiac distress and I had to have her put to sleep. I'm not rich, but that card helped me pay those bills. And we were not on the Cushing's journey for long, just a couple of months...I don't know how others get by.

[AliSa]

It's absolutely insane. I feel the vet took advantage of a situation since she didn't even do the proper tests. I told her if she could offer a solution, a plan or anything then I would be willing. But it's like she doesn't know what to do. He has been wandering and not being there mentally since before the Vetoryl. And nobody knows why. One said tumor the other vet said no. Etc etc. it's so frustrating. My mom went w me and said she couldn't believe how different the two places are and how different their opinions are. I literally have no idea what way to go. Or who to listen to about it. We will see what she says tomorrow. She told me she was talking to an intensivist and would have more info.

[Joan2517]

I know, it's very frustrating and upsetting when you can't rely on your vet. So many of them don't know a lot about Cushing's. Mine did not know as much as he thought he did. I learned more here than from him and I still think he had Lena on the wrong dose and disregarded a lot of my concerns towards the end.

Hopefully you will get some satisfactory answers today...I hope so.

[labblab]

Sadly, many of us have discovered that there are a lot of vets who are not very knowledgeable about Cushing's diagnosis and treatment. That's why we so strongly encourage folks to request copies of all test results so that we can jointly discuss what has already been done, and to offer suggestions re: the path forward. So before giving this new vet the green light on any additional testing, once again I'd ask you to get copies of the tests that have already been run and also a specific listing as to what she intends to do next.

Is there a particular reason why you chose this second vet? Was she recommended to you in some way? In honesty, aside from starting your dog on a higher dose of Vetoryl than I would have chosen, everything else that your original vet told you seemed quite reasonable and accurate to me. At this stage, if I were going to opt for more testing in addition to the ACTH stimulation test, I would probably request an abdominal ultrasound. That imaging can reveal abnormalities in many internal organs including the adrenal glands, and could help settle the question as to whether it is an adrenal tumor or a pituitary tumor that is most likely causing the Cushing's. If the ultrasound reveals no tumors in the adrenal glands, then I think you have a much higher degree of certainty that it is an enlarging pituitary tumor that is the cause of the neurological/appetite problems.

However, it seems to me that your top priority now is either to perform an ACTH test or else to discontinue the Vetoryl until you can get things sorted out and decide which vet is going to oversee your dog's care. Unfortunately, the fact that the new vet hasn't already performed the ACTH is now water under the bridge. But it is truly very dangerous to continue giving the medication with no knowledge as to the effect it is having on your dog's cortisol level. It would be safer to just stop the medication than to continue giving it in the absence of ACTH results. You can always start it back up again at any time.

By the way, have you started the selegiline?

Marianne

[AliSa]

I went with the second vet for a second opinion. The first vet said that she felt he has a large pituitary tumor. And that if the selegeline didn't help, then it would be time to consider euthanasia. So, before I decided something like that. I wanted another opinion so I went to a larger vet hoping they would have more experience. He is on the selegeline now. And has gotten no better.

[labblab]

I truly am so sorry for what you are going through. Even though it has now been twelve years since I lost my dog to what was presumably a macrotumor, I will never forget how awful it was to watch his decline -- and to feel so helpless. That part was almost unbearable.

I certainly understand why you want to be sure that no stone is left unturned. But please do let us know what further testing this new vet ends up recommending. The enlarging pituitary tumor seems most plausible to me, so I am wondering what it is that this second vet thinks may be wrong instead.

And truly, truly, truly -- I would stop the Vetoryl unless an ACTH is performed ASAP. The symptoms of low cortisol can overlap with many of the other problems you are describing and can quickly become life-threatening.

Marianne

[AliSa]

It really has been terrible and my stress levels are through the roof. So I'm sorry if I come off as irritable. I am going to call the new vet today and see what she says.
If he is taken off the Vetoryl and I got him in for the ACTH test would it still give them the information needed regarding his dosage? Is taking him off the Vetoryl briefly and seeing what happens with his neurological an option? I just seriously don't know what vet to listen to or what to do anymore. Although the Nuero symptoms started after his blood test (the 8 hour one) and before the Vetoryl was started... The first vet said she hadn't seen it progress as rapidly as his did. It's awful, he looks at me and its like he's not there. I haven't seen his tail wag in over a month.

[Joan2517]

We've all been there and felt exactly like you do...I know there were times I just wanted to jump up and down and scream at anyone who got in my way. I KNEW that she wasn't doing well and they kept telling me she looked great for her age...her age was not the problem as far as I was concerned.

[labblab]

If he is taken off the Vetoryl and I got him in for the ACTH test would it still give them the information needed regarding his dosage? Is taking him off the Vetoryl briefly and seeing what happens with his neurological an option? I just seriously don't know what vet to listen to or what to do anymore. Although the Nuero symptoms started after his blood test (the 8 hour one) and before the Vetoryl was started... The first vet said she hadn't seen it progress as rapidly as his did. It's awful, he looks at me and its like he's not there. I haven't seen his tail wag in over a month.
No need at all to apologize! We all understand how upset and frustrated you must be feeling right now.

In terms of using the ACTH to monitor Vetoryl dosing, ideally you do want the dog to be tested while consistently taking the medication. Theoretically, it has a short active life in the body. So if a dog is tested after discontinuing the medication for even a couple of days, you lose the ability to judge exactly how much that dose is suppressing adrenal function. So again, ideally, you'd be getting him tested before stopping the Vetoryl.

However, these are not typical circumstances. Your dog is visibly unwell. So if the test cannot be done within the next day or two, I would discontinue the medication if he were mine. Please bear in mind that I am not a vet myself, and I am not recommending that you do anything without first discussing it with one of your vets. But yes, personally I would be very curious to see whether or not the neurological issues improve if he stops taking the Vetoryl. If so, there are various possible explanations: he is being overdosed on the medication, or even if not genuinely overdosed he is reacting poorly to the medication, or he may indeed have a macrotumor and lowering the level of circulating cortisol is allowing the brain swelling/inflammation to increase, or perhaps even something different is going on.

At this point, though, it sounds as though his quality of life is degenerating daily. It seems to me as though it is well worth experimenting with stopping the Vetoryl in order to see whether or not that helps things. And if you don't see rapid improvement, I would still move forward with an ACTH even if it has to be scheduled after a medication break. Since you say he has worsened dramatically since beginning the Vetoryl, it is impossible to know whether or not low cortisol is now a contributing factor without performing an ACTH test. Again, I am very sorry that neither vet has made the ACTH the first priority after three weeks of taking the Vetoryl. In my opinion, that should have been the first test that was performed under these circumstances.

Marianne

[AliSa]

Hey guys. I really appreciate everyone talking me thru this and offering help and advice. It's with a heavy heart that I say this; the intensivist, and both vets have all agreed that it's Tysons time and not much can be done for his neurological symptoms. She said she can try to up the selegeline, for palliative care only. I just can't let him suffer anymore. This has been a huge life lesson as I look to 10 months to a year ago. When I told a vet something wasn't right and how easily I was dismissed. I should have pushed harder on that vet to do more testing. We know our dogs and when something isn't wrong. He's off the Vetoryl now and I hope he magically gets better but... I don't see that happening. Again, thank you everyone for your input and I'm glad to have found this place, even for a short time.

[DoxieMama]

I'm so sorry for this news. Please give Tyson some ear scritches, and yourself a hug.

[Joan2517]

I'm so, so sorry. Enjoy the time left, love him to pieces, and just tell him over and over how much you love him....that's really all he wants now. You did everything you could with what you knew. They just don't live long enough. We have all been where you are, and know how you feel...

[labblab]

I can only imagine how hard it was for you to write your reply, and I am so sorry about Tyson's situation. Please know that we will continue to support you in the coming days, regardless of what happens.

I'm glad you are stopping the Vetoryl. And the one other suggestion I could make is to discuss with your vet/s the possibility of giving him a small dose of daily prednisone. I know the notion of giving prednisone to a Cushpup sounds counter-intuitive, but it might serve one of two purposes. If his cortisol actually has been driven too low by the Vetoryl, the daily dose of prednisone could replace the cortisol he might be lacking. And even if he is not oversuppressed, increasing the amount of circulating steroid might help ease the swelling/inflammation of an enlarging macrotumor. The trade-off might be an increase in thirst/urination, but you might see a welcome increase in his appetite, as well. We have had other forum pups who have been prescribed prednisone by specialists subsequent to the diagnosis of a macrotumor, so it may be an option your vets might wish to consider.

I realize that what I am talking about here is just another palliative option, however, and it doesn't change the overall picture. My husband and I ended up euthanizing our beloved Cushpup when he lost the ability to eat and drink on his own, and the decision was heartbreaking. Especially for me, because I felt as though I had made some really big mistakes along the way. So my heart resonates with you, and I truly hope you'll allow us to continue to support both you and Tyson during this most difficult time.

Big hugs,
Marianne

[judymaggie]

I am so sorry that it is time for you to make end of life decisions for Tyson. As Joan has said, enjoy every moment that you have left with him and don't second-guess yourself -- you have been a great pet parent.

[Squirt's Mom]

I think you are very wise to stop the Vetoryl - that alone may give you more time together. Please know we are here with you even now. Anytime you need to talk, cry, scream, we are here to hold your hand.

Hugs,
Leslie and the gang

[wftmomx2]

I'm new here too and hope it's ok for me to comment. I had a 14 y.o. terrier with "doggie dementia" so I can relate to the stress you are having and your sorrow. It was awful watching him wander and get stuck under chairs, etc. He had degenerative myelopathy and multiple other health issues as well so I eventually had to make the tough decision. Just wanted you to know that you are not alone and I will be thinking of you and Tyson.

[molly muffin]

Oh I am sorry to hear this news.

You know I think Marianne has a very good idea. Stop vetroyl, give him a small dose of prednisone and see if he doesn't feel better on it. You might see a noticeable difference and if you are into a pallitive care situation, then making him feel good is all that is important. A tail wag would be lovely.

It is so hard to see things change so quickly.