Lillie, My big chocolate baby

[Lillie's Mom]

Hi. My name is Robin and I have a 6 year old chocolate lab, named Lillie. My story: Lillie's vet first suspected trouble back in November 2010 when her Alkaline Phosphatase level came back at 532 (5-131 is normal). We decided to just keep a watch on her. By September 2011 Lillie's Alkaline Phosphatase level had jumped to 910! A urinalysis showed a low specific gravity of 1.008 (1.015-1.050 is normal) and a high ph of 8.5 (5.5-7.0 is normal). An ultrasound was preformed on September 30,2011. No apparent tumors or masses were found. She did have a thicken bladder wall and her left adrenal gland was very small. The right adrenal gland could not be seen. Next, a Low dose dexamethasone suppression test was preformed. Cortisol sample 1 was 1.8 then <0.7 and lastly 3.5. If my understanding is correct, these results should indicate a pituitary tumor. Lillie was started on 60mg of trilostane, once a day, on November 28, 2011. Lillie's ACTH test was preformed on December 30, 2011. Cortisol sample 1 was 3.2 and sample 2 was 4.5 (1.0-5.0 normal). While Lillie's ACTH test was good, we still were not seeing the results that we hoped for, so we changed her trilostane to 30 mg twice a day on January 9, 2012. Still we are not seeing the results we would like, so Lillie's vet wants to try Lysoden in a couple of weeks. Lillie continues to have excessive water consumption, excessive urination, muscle weakness,shivers, lethargy and hair loss. So what does everybody think? Thanks for taking the time to read this, Robin and Lillie

[marie adams]

Hi Robin,

Welcome to you and Lillie! The experts will be along shortly to help you understand more about Lillie's numbers, Trilo and Lysodren. You are in good hands here with caring and thoughtful members all around. :)

I used Lysodren on my Aussie, Maddie and I was very comfortable with that drug. From what I can see on the numbers they are good like you said, but she still has so many symptoms.:confused:

What might help even further is to make a list of all the test results with all the numbers and letters associated with them, and what the normal levels are too. Please include blood panel numbers also. This way it makes it faster for the experts to see.

Take care!!! :)

[Cyn719]

Robin and Lillie

Hi and welcome to the forum. I am so sorry for the reason you are here but you came to the right place. You will have many members come along to give you advice and guide you. Like Marie said post all blood work and the more information the better. Also could you post Lillies weight.

Hang in there - hopefully we will get the the bottom of this.:)

Hugs xoxo

[frijole]

Hi and welcome! It is strange that you haven't seen any improvement with the symptoms despite the acth tests being normal.

Questions -

1. Did you have any blood panels done and if so can you post anything that was high or low? please provide the reading as well as the ranges for each from the lab so we can make sense of it.

2. The low dose test you talked about should have 3 numbers (you posted 2) I'd like to see those to confirm the pituitary dx.

3. Did you have any other acth tests done? Was one done before the dx? If so please post the dates and the reading on those (2 numbers on those tests)

IMPORTANT: You cannot simply switch over from trilo to lysodren. You must have a wash out period of 30 to 45 days (I can't remember which) This is very important so please don't let your vet talk you into switching until you go off the drug for at least that long.

If you didn't do any other acth tests I would suspect that perhaps the low dose test was false positive (it happens) and I would try to rule out hypothyroidism (easy and cheap to treat) as well as diabetes.

Kim

[Lillie's Mom]

Thankyou to Marie and Cindy for the welcome's! Now to try and answer Kim's questions.
Lillie weighs in at a whopping 100.8lbs. She seems to keep gaining. Of course, she sleeps most of the time with short bursts of energy throughout the day. (ok, this answer is for Cindy)

Her last blood work was in September. The standouts were:
Alk phpsphatase 910 (5-131 normal)
Phosphorus 1.9 low (2.5-6.0 normal)
Sodium 158 high (139-154 normal)

Urinalysis:
Specific Gravity 1.008 Low (1.015-1.050 normal)
Ph High 8.5 (5.5-7.0 normal)

WBC 21-50 High (0-3 normal)

Numbers I have for the low dose test are:
Cortisol sample 1. 1.8
1902. <0.7
Result verified
1903. 3.5

Lillie has only had one ACTH approximately 30 day's after start of Trilo. Did not do a test at 10 day's. Money is a bit tight.

Lastly, I knew that there was a 30 day wash out period after being on Lysodren, but thought it was shorter coming off of Trilo.

Hope this helps some, Robin

[labblab]

An ultrasound was preformed on September 30,2011. No apparent tumors or masses were found. She did have a thicken bladder wall and her left adrenal gland was very small. The right adrenal gland could not be seen. Next, a Low dose dexamethasone suppression test was preformed. Cortisol sample 1 was 1.8 then <0.7 and lastly 3.5. If my understanding is correct, these results should indicate a pituitary tumor.

Hi Robin,

Welcome to you and Lillie! I wish I had more time to post right now, but I have to be quick. I am puzzling over the ultrasound results showing a very small left adrenal gland and no image of the right gland. This is not a finding that is consistent with pituitary Cushing's, and leaves me scratching my head, in general. Dogs with PDH typically have two abnormally enlarged adrenal glands, or two glands that remain of normal size. One shrunken adrenal gland can be typical of adrenal Cushing's, but it would accompanied by an enlarged or misshapen second gland due to the presence of a tumor/growth. If a dog has TWO shrunken adrenal glands, this can signal iatrogenic Cushing's -- adrenal dysfunction caused by having been given medication containing steroids. Iatrogenic Cushing's cannot be diagnosed via a LDDS test; only the ACTH is an accurate diagnostic in that situation.

Did your vet have any comment about the ultrasound findings? Prior to the onset of her symptoms, had Lillie been treated with any medications that contained steroids?

Marianne

[Lillie's Mom]

Hey Marianne,
Looks like you have a beautiful white lab!
Lillie has never been on any steriods. Her vets only comments on her ultrasound were that she had a thick bladder wall, that her left adrenal was very small and that she could not see the right. I think Lillie had alot of gas!
Robin

[mypuppy]

Hi there,

Princess, my big chocolate baby also, and I would like to welcome you and your Lillie. LOL. These labs are so sweet aren't they? My Princess was dx with PDH also and is currently on Vetoryl. Although I cannot offer any other valuable advice for now, I do know Marianne is very knowledgable, among many others here, so stick around and ask lots of questions. Because of the wonderful family here, I was able to better help my girl and get her where she is today. She was dx. in 2009 (over two years ago), and still hanging strong. Take your time, learn as much and then proceed diligently. I wish you much luck and success whichever path you take with your girl. Would love to see lots of pictures of the beautiful girl, and feel free to view mine as well on my profile. Enjoy and sweet belly rubs to Lillie.

Warmest regards..

Jeanette and Princess

[KarenJ]

Hi Robin,
I'm a newbie here myself but wanted to say hi and welcome you. As was already stated, the experts will be along soon. They have been a HUGE help to me and my boxer, Maggie. I was still seeing symptoms in Maggie as well even though her numbers were down. What I just recently discovered is that Trilostane should be taken with food. I made that change a week ago and have seen a huge improvement. Maggie is also on 30 mg twice a day but is 71 lbs. Lillie may need a bit more at 100 lbs. but I know starting off lower is better. Welcome and take care!!

Karen

[mypuppy]

Robin, I must hijack your thread very briefly here, sorry.

Marianne,

Getting back to your comments to Robin on Lillie's ultrasound results. I know there has also been some doubts on your part regarding Princess's type of cushings, and so I looked through her ultrasound copies from Oct. 2009, and hers read: Adrenals: Left normal, right hard to identify but suspect is normal.

Does this raise any red flags for you. I have always been tempted to redo an ultrasound, but then again, would it change anything for her at this point?

Thanks for your feedback, and hope you and the labs are doing wonderful.

Much love. xo Jeanette

ps: sorry to Robin again...

[Lillie's Mom]

Ok, I dont know how you hijack ones thread!! I'm not very computer savy! This is my first time posting anything, ever! Anyway, you both are cracking me up!
I, also, thought about trying an ultrasound, again. But, I am having to be careful of the spending.
Robin

[Lillie's Mom]

Hello, Karen!
Lillie has alway's taken her Trilo with food. I make sure that she cleans her bowl before I will give it to her. My problem is that her eyes seem clearer and maybe she has a few more little bursts of energy but otherwise, all other symptoms seem the same.
Robin

[mypuppy]

Hysterical Robin,

Don't worry about being computer savy around here, I don't believe any of us are tech geeks:D, but you will find a lot of Cushings geeks. LOL. We use the term "hijack" once in a while when a member posts information about their furbaby on someone else's thread, like I did on yours. LOL. So no worries, it's all good.

So now how are we going to get you to upload some pics of that BIG chocolate baby of yours? Im so anxious to see her..

Take care, xo Jeanette

[labblab]

Robin, I must hijack your thread very briefly here, sorry.

Marianne,

Getting back to your comments to Robin on Lillie's ultrasound results. I know there has also been some doubts on your part regarding Princess's type of cushings, and so I looked through her ultrasound copies from Oct. 2009, and hers read: Adrenals: Left normal, right hard to identify but suspect is normal.

Does this raise any red flags for you. I have always been tempted to redo an ultrasound, but then again, would it change anything for her at this point?

Thanks for your feedback, and hope you and the labs are doing wonderful.

Much love. xo Jeanette

ps: sorry to Robin again...

Hi to both Robin and Jeanette! :p

For both Lillie and Princess, I think the value in knowing whether or not an adrenal tumor is present is directly related to whether or not either girl is a good surgical candidate for having the tumor removed, and whether the expense and risks associated with surgery are something that you ladies would consider on their behalf.

Jeanette, since Princess' one adrenal gland which could be seen clearly was of normal size, I'm guessing it is less likely that there is a tumor on the remaining gland. Usually when that happens, the tumor-free gland will shrink and atrophy. But that is why I have question marks about Lillie's situation. Regardless of the LDDS result, I would think that the ultrasound image of an extremely small adrenal gland would trigger speculation that there is a tumor on the remaining gland. And if so, surgical removal could offer a complete cure. It is an option that would take very serious thought before moving forward. But if surgery is something you would consider, Robin, I would want to talk over that ultrasound report in more detail with your vet. Although I know it is not cheap, you may even want to consider a repeat ultrasound in the future if surgery would be an option for you. And you also want to make sure that the ultrasound is performed on state-of-the-art, high resolution equipment since the adrenal glands are hard to visualize. This often requires referral to a specialty vet.

Robin, as far as the switch to Lysodren, I'm thinking that may be premature and you may want to just try increasing Lillie's trilostane dose a bit more before throwing in the towel. According to Dechra, when a switch is made to twice daily dosing, the overall daily total needs to be increased somewhat:


Once daily administration is recommended. However, if clinical signs are not controlled for the full day, twice daily dosing may be needed. To switch from once daily to twice daily dosing, increase the total daily dose by 1/3 to 1/2 and divide the total amount into two doses given 12 hours apart.

In Lillie's case, you left the daily total unchanged and just split it in half. If it were me, I'd now want to try the dosing increase that Dechra recommends before giving up on the trilostane altogether. Ideally, it is best to split the daily total evenly. But if all you have on hand are 30 mg. capsules, maybe you could try giving her 60 mg. in the morning and 30 mg. in the evening. That would still give you a revised daily total that adds 1/2 more of the trilostane than she was getting previously, and she would be getting the bigger dose during the day when she is more active. In the alternative, you could also see if there is a compounding pharmacy in your area that would take your 30 mg. capsules and repackage them into a 40 or 45 mg. dose.

Since her first ACTH was within the desired therapeutic range, of course you want to be vigilant to make sure that the dosing increase does not drive her cortisol level too low. But if you are not seeing any sympton resolution at all yet, it would seem to imply that the trilostane is leaving her system too quickly and a second daily dose may help with that.

Marianne

[Lillie's Mom]

Good morning, Marianne
Thanks for all of your research and concern! I am so confused. I asked Lillie's vet about increasing her dose of Trilo. But, she felt that since it has been about 10 weeks with no real possitive change, a switch to Lysodren would be a better option.
Going to get her on the phone. I will ask about redoing the ultrasound.
Robin

[labblab]

Robin, just to double-check, was Lillie's December ACTH performed within a time frame of approx. four hours after her dose of trilostane? Are you giving both daily doses along with some food (it is not metabolized as efficiently on an empty stomach). Since it has now been almost six weeks since that test, I do wonder whether her cortisol has actually crept upwards since that time and since splitting her daily dose.

Don't get me wrong, Lysodren is an extremely effective drug and I would have no problem with Lillie being treated with Lysodren. But since you've already started out on the trilo, I'm just searching for reasons as to why you're not seeing the expected results. A total of 60 mg. daily is a conservative dose for a dog weighing 100 lbs. It does correspond with the recommended starting dose at the UC Davis vet school, but is about half the initial dose recommended by Dechra. Since her December ACTH was within the desired therapeutic range, I understand why your vet is questioning the lack of results at that time. But since you've not repeated an ACTH since making the dosing switch, I have to wonder where Lillie's cortisol level is now. It may just not be well controlled yet throughout a 24-hour time period.

If your vet is more comfortable with Lyosdren and has had better success with it in her practice, then you may very well wish to go ahead and make the switch. But I'm not sure that the trilostane has really been given a fair chance since only one monitoring ACTH has been performed and you really don't know where Lillie's cortisol level is right now.

Marianne

[mypuppy]

Hi again Marianne,

Thank you so much for clearing that up for me. I know with Princess's sensitivity to the trilostane, it has been in question for a while now. And to add to what you said, I would have definitely considered, in fact I was praying and hoping real hard during the initial testing stages, that Princess would have the adrenal based cushings because I believe she would have been the perfect candidate at merely 7 years old, but I suppose some things work out differently for the better, huh! Many, many thanks again. Will post again soon on my thread as soon as I received today's acth results.

Much love and tight hugs to you and the sweet babies.

xo Jeanette

ps: Robin, you may have your thread back. LOL..:D

[Lillie's Mom]

Hey Marianne,
To finally answer your question: yes, Lillie's ACTH was preformed correctly and I alway's feed her before I give her the trilo.
I spoke to Lillie' vet, yesterday. I got her opinion and the thoughts of another vet at the clinic. After, alot of back and forth and second guessing myself, I have decided to take Lillie off of the Trilostane and start her on Lysodren when able. I have also decided, for now, not to retry an ultrasound. Lillie's vet said that her left adrenal was small but not neccessarily abnormal. I'm just going with my gut and hope and pray that I am not wrong!

[labblab]

Robin, I'm sure this decision has been difficult for you. But hopefully Lillie will have a more predictable response to the Lysodren and her treatment will be more straightforward. Just so you can better prepare yourself, here's a link to a thread that discusses the protocol associated with Lysodren "loading" and treatment. I encourage you to take a look at it so that you'll be able to clarify any questions with your vet in advance.

http://www.k9cushings.com/forum/showthread.php?t=181

And don't worry -- we'll be here to help with your Lysodren questions, too!

Marianne