Cushing’s Diagnosis & Options/Questions

[EspressoOrElse]

Petrie, my Chinese Crested, turned 8 earlier this year. She is ~15lbs. She has had a very healthy, active life. She comes from a reputable breeder with champion parents and no lineage of Cushing's. I actually have two Chinese Cresteds from this breeder, the other is 5 years old. He is just as healthy and active.

On April 21, 2023, Petrie went for her first-ever dental cleaning (for the entire 5 teeth she has -- the teeth is as much of a recessive trait in these dogs as the hair). I had full blood work completed. My very-trusted vet called and let me know that she had elevated levels and had a concern for possible Cushings. It was the first I had ever heard of the word.

The dental cleaning went great, but shortly thereafter my world started crashing down. Excessive drinking, ravenous appetite, urinating herself, can no longer jump up/down onto furniture, bloodshot/discharge eyes and I won't continue to embarrass her with the symptoms, you all know.

Went in for testing on Sept 19, 2023 - LDDS. Confirmed positive.


Time 1, Cortisol sample 1 results were 17 (yes, @ fasting for 14 hours)
Time 2, Cortisol sample 2 results were 3.9
Time 3, Cortisol sample 3 results were 5.4

What I immediately did and we are about ~30 days into now:

I tried the Adrenal Harmony Gold supplement for 2 weeks, no change.
We are on a second supplement called Melatonin & Lignans for ~2 weeks now, no change.

I think we have more miserable days than good. Her personality is completely gone. In fact, it disappeared within a matter of days when this all started. She hasn't played with her toys in months. She hasn't had her beautiful smile in months. Personally, this all has seemed so incredibly sudden and aggressive.

My trusted vet is willing to prescribe Vetoryl (Trilostane), however, I have my reservations. He did let me know if I were to start it, I shouldn't start it on the weekend due to Murphy's Law. They want me to start it during office hours so they are immediately available. That certainly shook me.

Beyond that, my understanding is that Vetoryl requires frequent visits and testing. Petrie gets incredible car sickness (I usually have to pull over and clean her twice within the 20 minute trip - each time, both ways). She is very anxious and afraid at the vet. Just a trip to the vet usually takes us 2.5-3 hours with the troubles we have and it is a living nightmare for her the entire time.

My questions:
I'm confused if the supplements we are trying are the right supplements. I guess maybe there are "types" of Cushings? Something to do with a hormone? Does this make sense?
Are there other supplements to try?
If we were to try Vetoryl, can someone help me to understand how often vet visits are?
I have this incredible guilty feeling that, even now, if we are to try Vetoryl and she has terrible side effects, it is my fault. I'm here to protect her, not make her worse. Am I alone in this feeling?
For the ravenous appetite, any recommendations? I feel terrible because she seems to just be starving all day. She cries for food sometimes and it could be less than an hour from her last meal.
I feel hopeless. If medication is designed to cure or comfort, I don't feel it will do either. There is no cure and the medication seems to have intense side effects. How do I engage in self-care for myself to stay strong for her?


Let me know if you need other results/numbers from her blood testing.

[labblab]

Welcome to you and Petrie! We surely understand your worry and we’ll do our best to offer information and support. You’ve given *us* a lot of very helpful information, and I want to take the time to read it over carefully before offering a more thorough reply of my own. But again, we’re very glad you’ve found us and that you have joined our K9C family!

Until later,
Marianne

[EspressoOrElse]

Thank you! I very much appreciate your time.

[labblab]

OK, here I am, finally back! Once again, thanks so much for all the excellent info that you've provided re: Petrie's symptoms and testing. As you're already aware, her diagnostic LDDS testing is consistent with Cushing's. You may or may not be aware that it is consistent with the form of the disease that is caused by a tumor on the pituitary gland (as opposed to a tumor on one of the adrenal glands). Since you've told us how stressed Petrie is at the time of any vet visit, I must tell you that high stress itself can elevate cortisol levels such that the LDDS might actually return a "false positive" for a highly stressed dog without Cushing's. But since so many observable outward symptoms are also consistent with the disease, I'm assuming the LDDS results are indeed valid.

So, turning to treatment, you are right that there is no cure for pituitary Cushing's -- the goal is to relieve the symptoms so as to minimize ongoing systemic damage and simply to make a dog more physically comfortable. Over the years, some folks who come to us have tried Adrenal Harmony. We do have some anecdotal reports of temporary improvement, but as far as I know, there is no controlled scientific testing that validates the value of this supplement. One of our administrators contacted them directly a few years ago in search of any actual bona fide testing, and none was provided to us by the company. So I'm not surprised that you saw no improvement.

As far as the melatonin and lignans, those supplements may have an affect on lowering certain elevated adrenal hormones *other* than cortisol. There is a condition labelled as "Atypical Cushings" which has been discussed and debated over recent years. It is speculated that certain Cushing's-consistent symptoms may arise as a result of elevations in other adrenal hormones, and that the treatment regimen of melatonin and lignans my help to lower those elevations and resolve some of the symptoms. However, these supplements take a long time time to kick in (like months as opposed to weeks), and they do *not* significantly lower the elevated cortisol of traditional Cushing's sufferers.

In Petrie's case, it appears as though elevated cortisol is her primary problem, so we'd need to look for a medication that has been proven to lower cortisol levels. Vetoryl is indeed one such medication, and it is the one that now is in most widespread use worldwide. Vetoryl is indeed a powerful medication, but over the years, we've seen many success stories. If you choose to do so, I wouldn't worry unnecessarily about your vet's advice to start treatment early during a week. That just signals to me that your vet is being very careful about making sure that he/she is available should any questions or issues arise. Current recommendations are to begin treatment using a formula that doesn't exceed 1 mg. per pound. In Petrie's case (weight of 15 pounds), you might want to be extra conservative and start treatment with only a daily 10 mg. capsule to start off. It's always better to start low and work upwards, if necessary, rather than vice versa.

From your perspective, the bad part will indeed be the testing. Theoretically, an initial monitoring ACTH stimulation test (requiring two blood draws one hour apart) should first be performed after two weeks of treatment, then after 30 days of treatment, and then at three month intervals once a dog has been stabilized at any given dose. However, more intervening testing may be required if dosing changes seem to be called for during the interim.

As opposed to the ACTH stimulation test, there is another monitoring testing protocol that only requires a single blood draw right before the daily dose of Vetoryl is given. Given Petrie's high level of anxiety at the vet, this protocol might be preferred in her case. If you do decide to go forward with Vetoryl treatment, I can tell you more about this approach.

In closing, my heart goes out to you as you're searching for the best path forward for Petrie. If only we could be gifted with a crystal ball! But all any of us can do is make the decision that we hope is best, given the information that we have at any moment in time. As I say, we've seen many dogs who have been helped enormously by Vetoryl treatment. But there are no guarantees, and I realize that makes your decision a really tough one. Please do feel free to continue to ask us any additional questions that come to mind. You can, and should, take whatever time you need to feel as comfortable as possible with any decisions.

Marianne

[Squirt's Mom]

Hi,

Welcome to you and sweet Petrie!

Marianne has started you off excellently as usual so I will try not to repeat what she has said so well. But I don't think that will happen as I am going to talk to you about a different drug to think about. I am not sure what country you live in but if you are in the US we have an options some other countries do not have - Lysodren. It is my drug of choice for treating a dog with the pituitary form of Cushing's. One big reason is fewer tests over time. Vetoryl is not a stable drug meaning the dogs on it often need frequent dose changes, decrease or increase, and with each change the testing schedule starts all over at the two week mark. So that means quite a few vet visits for most dogs on Vetoryl. The opposite is true with Lysodren. Once the dog is stable a dose change is seldom needed in most dogs on Lysodren. This not only means fewer tests for Petrie but also lower cost for you. You will want to talk to her vet about this and find out which drug they have had the most success with. That will influence any decision you might make concerning which to use. Both have the exact same risk factor and both are life saving drugs for our babies. The main difference is the length of life in the body...Vetoryl is leaving very quickly while Lysodren stays in the body for days. Vetoryl is giving once or twice a day as a result while Lysodren is given 2-4 times a week once maintenance is reached. If you are in the US talk to her vet about Lysodren and see what they think. The less testing might be better for her stress. Another thought there is something other members have tried with success with their high-stress babies. The vet came out to their car to do the blood draws and injections. They could take their baby out for a walk between vet visits to the car. Something else to discuss with her vet.

As for help with the appetite, one thing you can try is giving things like frozen green beans or carrots as treats throughout the day. The fiber can help them feel full and the frozen aren't over processed and don't have any additives like salt, "flavoring", etc...just good old veggie.

I'm glad you found us and look forward to learning more as time passes!
Hugs,
Leslie

[EspressoOrElse]

Hi Marianne and Leslie, thank you both from the bottom of my heart. I have been lurking this forum for some time now in attempt to understand Cushing’s and all that it entails. Your responses have me feeling as though I am meeting two celebrities for the first time and I should be asking for autographs right now. Truly, we (Petrie and I) feel incredibly blessed with your responses. Please know you are making this easier for both of us, and are helping more than I can express in type form.

Your responses have really helped to bring much of this together for me. :o

Few follow-up questions as I have digested your responses:


As I have lurked, I tend to notice one of you supports Vetoryl and the other supports Lysodren — but it doesn’t really to be vice versa. How come? What has you choose between one or the other? Because honestly, I read Leslie’s response and ask myself why anyone would chose Vetoryl over Lysodren?

With the ravenous hunger, is Petrie really hungry or is it her body thinking/feeling she is? Obviously there is a fine line between the two (I’m sure they feel the same), but I need help understanding if she actually needs food during the few hours between meals. I’m trying to determine if low-calorie treats (like the ones mentioned) are really needed to hold her over until meal-time or if maybe I should switch to distraction techniques (because she isn’t really hungry)?

How does this impact her exercise regime? I’ve noticed she cannot walk the distance she used to. She starts to get tired and needs to go back home. Should I plan, going forward, I need to shorten our walks? Should we avoid strenuous exercise situations? My current school of thought is go as hard as we have before so she can get really tired and sleep instead of suffer from hunger/thirst. Am I thinking of this wrong?

It is obvious to me, based on how aggressively this has morphed, we won’t have a lot of time. How do I know when it is time? As morbid as it sounds, what do those symptoms look like that I need to recognize?

At the same time all of this started, her eyes have been incredibly bloodshot and we’ve had significant discharge (big boogers all day long). Is this related? I’ve only found a few references to it, but it doesn’t seem to be a common symptom?


Can’t thank you enough…. Very much appreciate you.

[labblab]

Awwww gosh, you’re making me blush! Thanks so much for your kind words. I know Leslie will join me in feeling very grateful that we’ve been able to help you and Petrie in any way!

Turning to your questions: like Leslie, I do believe that Lysodren has been (and remains) a very effective Cushing’s treatment. In earlier years, we’ve had many dogs who have done very well with it. It just so happens that I have more personal knowledge about trilostane since it was the medication that was used to treat my own Cushpup. More importantly, though, the main reason that I pretty much talk exclusively about trilostane (Vetoryl) here is that Lysodren now is very rarely prescribed. With the exception of one recent member who has been switched to Lysodren from Vetoryl due to a less than optimal response, I think it’s literally been at least a couple of years since any members who’ve joined us have had Lysodren prescribed for their dogs. So basically I focus on Vetoryl because that’s really the only med that’s being used these days.

As to why Vetoryl has replaced Lysodren as the first-line choice of most current vets, rightly or wrongly I believe it is thought to carry less risk of serious ill effects including inducing permanent oversuppression of the adrenal glands. Vetoryl reduces cortisol production by inhibiting a related enzyme; Lysodren reduces cortisol production by actually physically eroding adrenal cells. While overdoses of both medications can result in oversuppression of adrenal function, due to the difference in how the two drugs work, I think many vets believe that the majority of dogs taking Vetoryl will rebound more quickly from overdose than will dogs taking Lysodren. Also, the initial “loading” phase for Lysodren (giving daily doses of the medication until sufficient adrenal cells have been worn away) requires a very high degree of vigilance on the part of the owner so as to ensure that the daily doses are stopped before too many of the adrenal cells are lost.

Having said all that, I don’t disagree at all with Leslie that Vetoryl also requires owners to watch carefully for side effects, and that it can cause permanent adrenal oversuppression as well, even if more rarely. One area that I do disagree with Leslie relates to the frequency of testing. If all goes smoothly, probably it’s true that less monitoring tests are involved with Lysodren. However, back in the days when we did see dogs being treated with Lysodren, my own memory is that it was not all that uncommon for them to experience extended loading periods, or repeated loading periods that also required multiple tests within a relatively short period of time. So I personally don’t think Lysodren treatment necessarily guarantees fewer tests, especially at the beginning. Some dogs have very smooth sailing with either medication; some dogs do not.

And finally, even though historically Lysodren was less expensive than Vetoryl, lately I’ve been stunned to see the high cost of brandname Lysodren. Perhaps because it is now used so rarely, whoever makes it seems to be charging a *lot* for it. Like, really a lot. This means that having the medication compounded is likely the most feasible option financially, as may also be the case for dogs requiring higher doses of Vetoryl. And with either drug, for some vets, compounding may be an issue. And with that, I’ll conclude my Vetoryl/Lysodren lecture for the morning! And I’ll move on to your other questions in another reply in a little while ;-).

Marianne

[labblab]

OK, I’m back again and will offer some thoughts about your other questions.

As far as hunger, if Petrie isn’t losing weight, then technically I guess you can say that she doesn’t “need” any snacks. But if her hunger is making her quite restless, I really don’t see any harm in curbing her appetite with some of the low calorie snacks like those that Leslie suggested. Our goal is always to make our dogs more comfortable, and if filling her stomach a bit helps to calm Petrie, I’d advocate for the snacks as well as any distraction.

In terms of exercise, I wouldn’t push her to go any further than she wants to right now. I think maintaining your daily routines are good for you both, but if the walks need to be shortened for her comfort, so be it. Cushpups can easily get overheated, plus muscle weakness may cause discomfort if pushed too far. I think I’d let Petrie guide you in terms of how far she wants to go on any given walk.

In terms of prognosis, most of the literature states that treatment with either Vetoryl and Lysodren grants about the same extension of lifespan. And that stated time period tends to average about two years after starting treatment. Most of us here have never felt comfortable with that prediction, mainly because we’ve seen many dogs who have continued to live out their normal lifespans once their cortisol levels have been effectively lowered. I think one factor that affects that prediction is that many Cushpups are not diagnosed until fairly late in their lives to begin with. So an additional two years may be all that we would have predicted for them, regardless of Cushing’s.

One feature of Petrie’s illness that surprises me a little bit is how quickly you say her symptoms emerged. Cushing’s is typically a slowly progressing disorder, with gradually worsening symptoms over time. But again, both her testing and her symptoms are consistent with the disease, so I’ll trust that it’s an accurate diagnosis. Untreated, Cushing’s can leave dogs more vulnerable to such things as developing infections, problems with the kidneys and gallbladder, blood clots, and high blood pressure with its associated problems. Speaking of high blood pressure, that might account for her bloodshot eyes. Given her high stress level at the vet, it might be impossible to get an accurate measurement. But it just occurs to me that blood pressure might be a culprit with that.

If you do opt for treatment with either Vetoryl or Lysodren, you may be surprised by how quickly you see some relief with the thirst, urination, hunger and restlessness. Those are typically the symptoms that improve most rapidly. I don’t want to give you false expectations that you’ll see immediate improvement, but with effective dosing you’d hope that Petrie would be feeling better within that first month, if not sooner. I know my own boy was a bit of an exception, but we saw a big improvement within the very first week of treatment.

Just a couple more thoughts. To ease Petrie’s anxiety at the vet, Leslie has made the excellent suggestion re: maybe keeping her in the car and having the vet come out to do the testing. Also, I’m wondering if you live in an area that has any mobile vets. If you do opt for Vetoryl and your vet feels comfortable with monitoring her treatment via a single blood draw right before her daily dose is given, maybe you could arrange for a mobile vet to come to your house for that single blood draw? Just a thought…

OK, I’ve been enough of a blowhard this morning, so I’ll stop for now! Please do keep in mind that I’m not a vet, myself. So all my suggestions are just based on the experiences I’ve witnessed here. And before closing, I have to tell you how sweet your avatar and new photo are!! Two precious doggies, for sure. No wonder you love them both so much!

[EspressoOrElse]

Hi Everyone! I thought I would stop by and provide an update on Petrie and decisions made. I can’t say it enough… This forum and the Mods are a life-saver. So much information here that you just can’t find anywhere else. Thank you…

To no one’s surprise, symptoms continue. Worsening has been her muscle atrophy and her eye sight. We’re about 5 months into Petrie beginning to display all of the symptoms of Cushing’s and 1 month into testing positive for Cushing’s. We have tried supplements with no success. After great conversations with my trusted vet, we have been prescribed Vetoryl (Trilostane). We discussed Lysodren, but the vet is reluctant due to its ability to “fry the dog’s adrenal glands if you aren’t careful,” overdose concerns and the extent of close monitoring required.

With Petrie’s weight, we are starting at 5mg twice daily. We discussed 7.5mg once daily, but with her weight and the extent of symptoms we thought we’d start at 5mg twice daily. My vet doesn’t carry this RX and it is on order. I should have it this week. 1 package of 30 pills is $58.99. From there, we have pre-scheduled an ACTH test for 11/17/23 (approx two weeks from starting meds; assuming we get the pills as expected). The test is $335.

My concerns for the cost and extent of vet visits continue. However, I think it is fair to say that Petrie at least deserves the attempt. We are going to try this prescription, the ACTH test and monitoring before making any next decisions. I’m feeling good about this decision, but reserved at the same time. Until next time — take care! And thank you again.

[Harley PoMMom]

Thanks so much for the update! I believe 5 mg twice a day is a reasonable dose for Petrie. I'm including a link to a thread from our Resource Forum which is titled " COST SAVINGS FOR PET OWNERS OF CUSHINGOID DOGS " https://www.k9cushings.com/forum/showthread.php?9066-Cost-Savings-for-Owners-of-Cushingoid-Dogs There are a lot of nifty tips in it and I hope it helps.

Hugs, Lori

[EspressoOrElse]

Hi friends, need some advice. Considering end of life options.

We are a week today on Vetoryl (5mg twice daily). While the good news is no side effects, we have had absolutely no improvement. Recent development this week are neurological issues. She has lost fine motor skills, has fallen a few times, ran into obvious things a few times, etc… We have our ACTH test scheduled a week from today (which will be two weeks on Vetoryl at that point). Beyond all this are all the other classic symptoms. We’ve added a diaper at night.

Given no symptom relief I asked my vet if we could go from 5mg to 10mg and push the ACTH test by two weeks. Vet disagreed. She wants to check numbers two weeks into 5mg and go from there. She agreed we will probably need to increase the dose, but unwilling to do that until we test. She let me know the ACTH test will just let us know that we “aren’t pushing numbers too low. We never raise a dose at two-week check because it works better over time and we don’t want a roller coaster of up and down doses.” She also said “Usually if the first test is normal or still high, we wait two more weeks to see what happens and then we may increase dosage.” Any thoughts on this? Am I being too impatient?

I’m frustrated because Petrie is still suffering, if not more at this point. Vet wants to basically wait another ~2-3 weeks before considering to increase dosage and then test again. This was my fear as now we are talking two tests in less than 30 days. To be completely transparent, I’m beginning to have thoughts that, given the advancement of now even more issues, I don’t want to wait until Petrie is at her worst (or has to experience her worst before we realize she can’t for the long haul). And with that, not sure if we should even move forward with the ACTH test considering her anxiety, but consider a different comfort option here in the near future. Am I being unreasonable about this?

I struggle as I realize there is no cure to this and find myself wondering how long I’m going to drag her though this with just the hope Vetoryl will turn her back to the way she was.

[Harley PoMMom]

The vet is correct in that is not recommended to increase the dose at the 2 week treatment window because cortisol may continue to drift downward during the first 30 days of treatment; however in saying that, if Petrie's ACTH stim test shows that her cortisol level is high you could tell the vet you want to increase the dosage another 5 mg for a total of 10 mg daily or split to 5 mg twice a day.

In some dogs with the pituitary type of Cushing's the tumor on the pituitary gland can grow, and if large this is when neurological symptoms start to appear. The only way to see if this is happening is with a MRI.

I am so sorry that you and Petrie are going through this and my heart goes out to you. The one fact I can tell you is that only you know Petrie the best and know what is best for her.

Hugs, Lori

[EspressoOrElse]

Hi Friends,

Petrie crossed the rainbow bridge peacefully in my lap, getting kisses and being told how much she is loved on November 20, 2023. Everything went as planned. I want to say thank you to the mods and everyone else that offered thoughts and help during this time. It bought us a few more weeks together, for which, I am incredibly thankful for. Unfortunately, Petrie began having too many complications and her comfort/quality of life began to be compromised. Her ashes are already back home and she rests next to the side of the bed. Now begins the time to heal.

Thank you for having this forum. It helped us make important decisions these past weeks

[labblab]

I am so sorry for your loss of your little girl.. But thank you so much for returning to let us know what has happened. We are very grateful that you are allowing us to join you in honoring Petrie’s life and celebrating her sweet spirit. She has now been added to our special memorial thread, where she joins all our other beloved Rainbow Bridge babies.

https://www.k9cushings.com/forum/showthread.php?9294-Remembering-All-Who-Have-Left-Us-(2020-2023)&p=211288#post211288

If you’d like for us to add a photo link to her memorial line, it will be our privilege to do so. At any time, you can send a photo to our gmail account, and we’ll take care of the rest: k9cushings@gmail.com.

Thank you, also, for all of your very kind words. Petrie was such a lucky girl to have you for her parent. She was released from this world cradled in love, just as she lived her life. Please know that we’ll welcome you back at any time should you wish to share more stories about your sweet girl, or if you just want to talk. You and Petrie will always remain part of our family.

Take good care of yourself, and sending my best wishes to you always.
Marianne

[Harley PoMMom]

I am so sorry for the loss of your beloved Petrie and my heart goes out to you at this most painful time. Please know that we are here for you and always will be.

With Heartfelt Sympathy,
Lori

[Joan2517]

I'm so sorry for your loss of Petrie.

[judymaggie]

I am newly back on the forum but have read your posts about Petrie. She was obviously much loved by you and you have offered her the loving act of letting her go. Let your heart heal by focusing on all the wonderful times spent together.

[gyrochris]

I didn't finish reading the whole thread I'm so sorry about your dog You know Penny's 14 and that's a good life for her She's ready to go Now my Min Pin at 13 Here's Dad made it to 16 but let's not split hair share Pennies had a great life You know I'm not going to let her suffer But I understand your pain She's my best friend in the whole world world