Frustrated and confused...Rio (13.5 y/o border collie)

[riopete]

Hi everyone,

I'm new and not quite sure where to begin, but I'll try. My dear Rio, a 13.5 year old border collie (52lbs) is not doing so well. He's currently being treated for diabetes insipidus, but I suspect this may not be the correct diagnosis.

Some history

A year and a half ago, Rio was healthy as ever. He was as active and extremely playful (puppy-like in many ways). No one believed he was 12 years old. Our local vet offered a comprehensive "senior care exam", which we took advantage of as a proactive measure 'just in case'. Rio passed with flying colors. Everything was normal, except for some evidence of arthritis in both elbows. All of his lab results were great. USG 1.031

April 2011
We started noticing that Rio was drinking and peeing more, with a slight drop in energy level. A basic chem panel revealed he had some protein in his urine, dilute urine (1.016 USG) and low level of iron. Our vet recommended an ultrasound of his abdominal area to check for any tumors. The vet also noted a slight decrease in muscle mass in his hind legs. The ultrasound came back clean except for a "slightly enlarged liver" and the recommendation was to watch and wait, and return for another lab panel in 6-8 weeks. There was no mention of Cushing's Disease at this time. At this point we started measuring his water intake regularly.

June 2011
His increased drinking/peeing (PU/PD) continued at 10-13 cups per day, along with decreased energy levels and tolerance for exercise, some panting, as well as increase in appetite. We'd recently relocated and decided to get a second opinion at a new vet closer to home prior to his scheduled check-up. A new abdominal ultrasound was recommended which came back 'unremarkable'. His adrenal glands were normal in size and shape. The new vet submitted blood work to look for evidence of Cushing's, kidney desease, liver disease and diabetes.

Based on Rio's signs and lab results (USG 1.005., elevated UCCR at 123.1, mildly elevated potassium 6, GGT 9, Cholesterol 370, mildly decrease BUN 9, creatinine .7, albumin 2.9), a tentative diagnosis of Cushing's was made. A Low Dex Suppression test was recommended to help confirm one way or another.

We were told that the the Low Dex Suppression test results indicate that he does not have Cushing's.

Cortisol Pre-Dex:
Result: 2.8 Range: 0.0 - 6.0 UG/DL

4 hours:
Result: 0.9 Range: 0.0 - 0.8 UG/DL

8 hours:
Result: 1.1 Range: 0.0 - 0.6 UG.DL


In light of these results, our vet determined it might instead be Diabetes Insipus (which is apparently rare), but wanted to first rule out psychogenic polydypsia. So we collected Rio's urine first thing in the morning for a few consecutive days to measure specific gravity. These tests showed no change in USG (1.005 to 1.007 range), so...

Options at this point: Water Deprivation Test (to test for diabetes insipidus), or start a DDAVP trial (desmopressin used to treat it) to see if he responds. We chose the latter because we didn't want to put him through water deprivation, since there was no apparent harm in giving him DDAVP (except to the wallet, wow!).

July 2011
For the first week, it seemed Rio was responding to the DDAVP because his water consumption dropped from 10-13 cups to 8-10 cups a day, but there was no change in his USG (in the 1.005 - 1.007 range).

We were instructed to increase the number of drops (from 2 to 4 per day), but this had no additional effect. In fact, he started drinking more water (back to 10 cups a day). A few variables led us to question these results: (1) the dosage increase was in the midst of several very hot days, which could explain the increased water consumption, (2) we started with a new bottle of DDAVP the day we increased the dosage and wondered if something may be different about the new bottle, (3) the size of the drops coming out of the new bottle appeared smaller, making it almost impossible to regulate the dosage. These factors led our vet to continue extending the DDAVP trial in order to have a period of time without these variables.

However, to make things more complicated, Rio started limping a few weeks ago (his right elbow) and after the first visit, we were told it was due to arthritis. We didn't want to introduce a new med that might skew the DDAVP trial, but when the limp became worse (and inflamed), the vet decided to give him a course of prednisone, which of course skews everything. This meant that we'd have to wait until the pred is out of his system before trusting any results. But we were advised to continue administering the DDAVP during this time (still at 4 drops per day).

Current Status
He's now almost finished with the prednisone (an ultrasound of his elbow revealed a partial tear of the ligament around his rotator cuff), and we're supposed to wait another week or so to measure the results of the DDAVP trial. What's interesting is that during the week of prednisone, his drinking decreased (now 8-9 cups a day), and for the first time in two months, his USG has been in the 1.008 - 1.011 range (still quite low but different).

So, after over a month of DDAVP treatment for Diabetes Insipidus, Rio's urine is still dilute, his energy is still low, his back legs have lost all muscle tone (and are atrophying), his appetite is still insatiable (in an ADD sort of way). In short, he's unrecognizable from the alert and energetic dog he was six months ago.

Once the prednisone is out of his system, we're going to test for Cushing's again, but I'm wondering if anyone has had a similar experience with this and if so, do you have any suggestions for what we should be doing differently? This has been an extremely frustrating and confusing experience. We know he's ill (and that it's not just old age) and we just want to do what we can to make him better.

Thanks,
Christopher

(I have manually approved your post so that members can start responding to you asap. Please check you email for a message from K9Cushings which you need to reply to in order to keep your posts out of the moderation que. Welcome aboard!)

[addy]

Hi and Welcome,

I am glad you found us. I am stopping by offering moral support and hugs.

Others will be along soon to help in whatever way they can.

You have been through a lot and I can relate to how frustrated you are. Hopefully we will be able to offer some light on the journey so far.

Hugs,
Addy

[jmac]

Hi-
I just wanted to welcome you as well. You have found a wonderful site with many helpful and caring people. I wish I had some advice to offer you, but I don't. I can relate to your feeling of frustration and missing the dog you used to have. I'm sure someone will be along soon to give you more advice. I'm confident you will find this site to be a great resource.

Hang in there!
Julie & Hannah

[Harley PoMMom]

Hi and welcome to you and Rio!

According to this abstract: The desmopressin stimulation test in dogs with Cushing's syndrome. (http://www.domesticanimalendo.com/article/S0739-7240%2807%2900101-4/abstract) Desmopressin significantly stimulated cortisol release in dogs with PDH. Since the majority of dogs with Cushings are diagnosed with PDH and since Rio's ultrasound did not find a tumor on any of his adrenal glands, I would assume if Rio does have Cushing's the diagnosis would be PDH, so before any Cushing testing is done, IMO, the desmopressin drops have to be stopped too.

Cushing's is one of the most difficult diseases to get a confirmed diagnosis because not one Cushing test is 100% accurate so it usually takes multiple tests for a proper diagnosis. Strong symptoms are a huge part of the diagnosis and a Cushing savvy vet will not initiate any treatment without strong symptoms and a proper diagnosis.

Please know we are here to help you in any way we can so do not hesitate to ask any questions.

Love and hugs,
Lori

[riopete]

Thanks everyone for the kind words and warm welcome. And thanks Lori for the link to the abstract. I'll ask my vet about the specific plan to take him off the DDAVP before testing again for Cushing's.

The stories and info on this forum are incredible.

abrazos,
Christopher

[littleone1]

Hi Christopher,

Corky and I want to give you and Rio a belated welcome. You have found a very special group of people that are always here for you. They are very caring, supportive, and have alot of knowledge and experience with cushings. I hope things go well for you and Rio.

Terri

[MBK]

Welcome Christopher and Rio -

I understand all to well how frustrating it is to know something is wrong with your dog, but not feeling like you are getting the proper diagnosis. Sounds like you are doing a wonderful job trying to get to the bottom of it all. My dog, Alivia (13 years old), also tested negative for cushing's on the LDDS test, but further testing showed that her cortisol level was very elevated.

There are a lot of knowledgeable people here that can answer your questions. The rest of us will just offer moral support! :)

[riopete]

Hi everyone,

I'm very sad to report that today Rio was diagnosed with Cushings.

Part of me is relieved to finally have a new diagnosis after the last few months of constant testing and questioning the original diagnosis of diabetes insipus, but another part of me is still skeptical and worried about the possibility that the diagnosis isn't correct and that we could make Rio sick or worse by starting him on the meds.

Here's how things have unfolded since my initial post, and why I'm so nervous about it.

Rio has been more playful and alert over the last few weeks. He sleeps through the night and hasn't had any more accidents inside, but he continues to drink 10-13 cups of water a day and pees often (I live in the country so he is able to pee as much as he wants outside during the day). His urine is still very dilute (USG is always in the 1.006 - 1.010 range). He does pant occasionally, but it's been so hot that it's hard to know how much of this is from the heat. He still seems hungry all the time (more so at night), but he doesn't have a pot belly. He is weaker in his hind legs but I'm not sure if it's any worse than a month ago (perhaps I'm just getting used to this?). His coat is still very shiny and he isn't losing hair, but hardly any hair has grown back from his last ultrasound 2 months ago.

Since Rio failed to respond to the desmopressin, our vet started questioning the initial diagnosis of diabetes. So we took him off the DDAVP (drops) and he was again tested for Cushings, with another complete chem panel and a 2nd LDDS test.

The LDDS results were "borderline" (similar to the 1st LDDS):

Resting 3.3
4-hour 0.8
8-hour 1.6

His chem panel came back normal (ALK, ALT, Cholesterol all within normal range). However, his recent Urine Cortisol/Creat ratio was high at 82.

Given these results, our vet decided to go ahead and do the ACTH Stim test. This is the first time this test was performed and it came back positive with a result of 35.

Based on this result, he is now being diagnosed with Cushings, and our vet has recommended we start the loading cycle of Lysodren tomorrow (Saturday). I'm very scared about whether I am doing the right thing by starting this treatment now.

After weighing the various treatment options with my vet (and really hoping that something less toxic might be recommended as the first line of attack), I couldn't find a good reason to object to my vet's recommendation of starting with Lysodren, given his experience with Cushings.

But... the idea of giveng Rio, (who is rather bright and alert and playful today), something tomorrow that will make him start feeling sick, is making me feel sick.

My hope is that the disease just hasn't progressed too far yet and that by starting treatment now we are doing right by Rio, but how do we know? Is this a matter of trusting my vet?

I certainly don't want to wait until things get worse without the drug, but it feels a bit like a catch-22. Can the ACTH Stim test be so definitive after two borderline LDDS tests and normal blood panels? :confused:

I feel I won't be able to sleep for the next week worrying during the loading cycle. Any advice on how to best navigate the beginning of treatment in a case like this?

I so appreciate the support this forum offers.

Christopher

[frijole]

Hi Christopher. I'm a mom to a two dogs that were diagnosed with cushings - one was accurate and second one was misdiagnosed... so I am really cautious about these tests. A few questions..

1. Does Rio have a round belly? Cush dogs have round tummies - go to our photo albums and look :D (I just re read and you said no... :confused:)

2. When you did the ultrasound did they get a look at the adrenals? It would be nice to know if they were enlarged, one was larger or if they were normal size.

3. Are the liver enzymes still normal? I have never in my 6 yrs reading here seen a cush dog with normal liver values. This has me stumped. When was the panel done? This would make me nervous.

Symptoms that point to cushings are: water intake, hair not growing back, hunger.

Did your vet give you prednisone to have on hand in case of emergency and instructions on how the 'loading phase' works? I'm attaching a link - its very helpful.

Is Rio on any meds or exhibiting any illness/injury that could have caused stress, pain or any other reason that cortisol could be high and thus affect the test results?

I'm torn so I can see why you would be. ITs the lack of a tummy and the liver enzymes that have me scratching my head.

Please do know that lysodren saved my dog Haley's life and is a wonderful drug... you just don't give it to a dog that doesn't have cushings. How confident are you in this new vet's experience with cushings?

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

[riopete]

HI Kim,

Thanks so much for the quick reply.

Rio's belly is more rounded but it's not so pronounced as to consider it a pot-belly. We can feel his ribs more pronounced under his coat and he definitely has more sagging / distribution of weight to the lower part of his body. His face is also a bit more bony. He drinks tons and his pee is quite dilute, and definitely is hungry (at times crazy hungry). We've been careful from the start not to feed him more and maintain his weight (which pains us because of the hunger), and our vet suggested that this may be why he doesn't have the typical pronounced the pot-belly. His coat looks great, but we've cooked his food for years using a recipe from the vet that includes sardines, so maybe this is why. Hair is definitely not growing back from where it's been shaved for all the test.

They did do an an ulstrasound back at the end of July and found no enlargement of the adrenal glands.

If I understand the liver enzymes, they are normal:
ALK. Phosph: 92 (ref 10 -150 U/L)
ALT: 41 (ref 5 - 107 U/L)
Cholerterol: 260 (ref 112 - 328 mg/dl)

Are there others I should post? These were from a chem panel done on Aug 23.

Injury-wise he did have a problem with an inflamed elbow and slight tear of a tendon that had him limping for weeks (but this started a couple months after the initial signs started). The tear was confirmed by ultrasound of the leg/shoulder and after a course of pred, and after some vigilance on our part to restrict movement over the last month this problem is now under control (no more limping for the last couple of weels). We had to wait for the pred to be out of his system before the 2nd low dex test.

Our vet did give prednisone to have on hand in case of emergency and was very thorough about how to check for signs during the loading process. Thanks so much for the link. I'm fortunate enough to have Rio withe me all day everyday, so at least it's easy for me to monitor very closely.

I should mention that I have two vets that have been working on this case together Our local vet was not familiar with diabetes insipidus, so a vet at Davis was initially handling the case. Now with the Cushings diagnosis, our local vet is primarily on point as he's been managing Cushings cases for years. I've appreciated their cautiousness over the last 3 months in not being quick to diagnose Cushings, but with the ACTH Stim results and most of the signs pointing in this directon, they feel confident that this is what it is.

On a side note, I did line up the UTK test for atypical Cushings, but I've been advised that this isn't necessary given the results of the ACTH Stim.

Thanks again the help, support and insights.

Christopher

[Harley PoMMom]

Hi Christopher,

Although it is very unusual for the ALP not to be elevated in a dog with Cushing's, I think (but I could be wrong :o) one of our Administrator's furbaby, Glynda and Lulu, had normal liver enzymes with Cushing's. Hopefully Glynda will stop by and either confirm this or let me know I am totally wrong! :eek::o:)

Were the Cushing tests done under optimal conditions, such as with no stress/illness/injury? If so than with two Cushing tests resulting in positive and Rio displaying some pretty strong symptoms, it sounds like to me that the diagnosis of Cushing's is likely.

The link that Kim gave you does have very good information about Lysodren, many members have printed it out and keep it very close at hand.

Keep us updated, please.

Love and hugs,
Lori

[riopete]

Hi Lori,

Thanks so much for the info. The story continues....

I just spoke with one of the vets who, after consulting with other colleagues about Rio's case, is recommending we start with Trilostane instead. She believes it to be a little safer option for Rio's specific case.

I was mentally prepared for Lysodren and so this change in treatment strategy is something I need to start wrapping my head around. I'm so grateful to have this forum as a resource.

Christopher

[addy]

Hi,

My Zoe's ALP is always normal. Her ALK is sometimes normal, sometimes slightly elevated. Her cholesteral is sometimes normal, sometimes slightly elevated.

Zoe started on a low dose of Trilostane last June. What dose was prescribed for your pup and what does your pup weigh? Has your vet scheduled an ACTH stim 10-14 days from starting? You want to only check if you pup has gone to low and then continue on the dose and recheck after 30 days from starting.

Starting treatment alleviates symptoms, it does not cure the dog, so you want strong symptoms before starting.

Trilostane has the same potential to make a dog ill that Lysodren has. You will still have to monitor your pup for signs of a problem with too low cortisol. Some vets feel it is safer because you can start at a lower dose and withdraw the drug and restart it. There have been studies that indicate that twice day dosing may be easier on some pups and has the potential for less side effects.

I guess the bottom line is feeling confident in the diagnosis.
Hugs,
Addy

[frijole]

Interesting.. Anyway, Christopher ALKP is the one that is normally high and we see it into the 2000s. I wouldn't waste a penny on the UTK panel at this point because the cortisol came in at 35. I don't think you would learn anything new.

Anyway... it seems like you are in pretty good hands and comfy with the vets. I would guess they made the switch to trilostane because it doesn't stay in the body long and frankly since you are worried this is a good thing. If the dx is wrong you can quickly stop giving it vs going thru a loading phase.

Sorry if I scared you.. I just am cautious as I had 6 or 7 false positives. I would move forward with the trilo/

Kim

[labblab]

I'm sorry that I only have a moment to post right now, but I do want to make sure that you have this link to our resource thread re: trilostane:

http://www.k9cushings.com/forum/showthread.php?t=185

In terms of dosing, Addy is exactly right that initial dosing is determined by the weight of the dog. And our experience here is such that I strongly encourage you to ask your vet to refrain from prescribing a dose any higher that 1 mg. per each pound of Rio's weight. Even though the published literature and dosing chart of Dechra (manufacturer of brandname Vetoryl) references an initial dosing range of 1-3 mg./lb., the vets who serve as their technical reps are verbally advising that most dogs be started at the very lowest end of the range in order to minimize the likelihood of unwanted side effects. Since it sounds as though you may be on a fast track to get started with treatment, I did want to bring this dosing info to your attention ASAP.

The Dechra technical reps are happy to speak with owners and vets alike re: their most updated dosing recommendations. Many of our members have spoken directly with Dr. Tim Allen, and he is always happy to be of help. You will find the Dechra phone and email info under the "Contact Us" link on that trilostane resource thread given above.

Good luck!!!
Marianne

[Squirt's Mom]

I want to chime in here and make sure you know that Trilostane is NOT safer than Lysodren, regardless of what your vet may tell you. Trilo has the same potential for crisis as Lyso. Parents and vets can be no less diligent when using Trilo VS Lyso. Be sure you are still given the pred for emergency even tho you will be using Trilo. This is my biggest issue with Trilo - parents are lulled into believing nothing can go wrong if they use Trilo and that is simply not true, especially when protocols are not followed. So study up on the link Marianne gave you about Trilo so you are prepared to guide your vet if needed. :p Trilostane is a life-saving drug, as is Lyso, and I am not trying to discourage one or the other but rather to make sure you understand Trilo is not the "safer" choice as is so often touted. ;)

Another little heads up - it can sometimes be a bit more expensive to use Trilo as it can take more testing to get the dose dialed in right. Some pups find the first dosage is just right but others find they need several adjustments which means an ACTH after each change.

Another consideration is which drug your vet is the most familiar with. I wouldn't want my baby to be a guinea pig if it could be avoided. ;)

One last comment, if you decided to switch treatments along the way, you will have to have a 30 day washout between the two drugs. IE - you would have to stop the Lyso/Trilo, wait 30 days, then start the other.

They are both miracle drugs when it comes to our babies. From what I have read, there is no need to rush into treatment today; you have time to talk to your vet, do some research into both meds, talk to folks who use one or the other, and decide which one you would be more comfortable with. And, yes, you DO have the right to say you prefer to use one over the other. ;)

Know we are with you and Rio all the way!
Hugs,
Leslie and the gang

[Harley PoMMom]

The link that Marianne provided for you is very informative, so I will paste one here too! Dechra's U.S. Product Insert. (http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf) and Trilostane/Vetoryl Information and Resources. (http://www.k9cushings.com/forum/showthread.php?t=185)

Leslie is correct that Trilostane/Vetoryl is no safer to give than Lysodren/Mitotane. IMO, either medication is safe when monitored appropriately and with owner observation and each med can have similar adverse effects. So "owner observation" is always a crucial component of treatment. One or the other may work better for an individual dog.


I just spoke with one of the vets who, after consulting with other colleagues about Rio's case, is recommending we start with Trilostane instead. She believes it to be a little safer option for Rio's specific case. Could you expand on "Rio's specific case." Are there health issues involved in your vet's decision?

Please remember that you are definitely not walking this path alone, we are here beside you and will help in any way we can.

Love and hugs,
Lori

[riopete]

Hi everyone,

This forum is unbelievable and I can't thank you all enough for the links and thoughtful responses.

Kim, I really appreciated your post, which didn't scare me. It actually helped me feel better about my own cautiousness around these tests. If it's the one thing I've learned is that this diagnosis can be challenging and frustrating for everyone involved. Since both vets I've been working with feel confident in this diagnosis (and neither have been quick to make it) I guess I should be feeling a little more secure about it myself. My worry doesn't come from a lack of trust so much as just being scared (and my natural tendency to question everything :confused:).

Addy, thanks for letting me know about Zoe's liver enzymes, this helped take some of the 'iffiness' away in my mind. Rio is 52lbs and he’s been prescribed 60mg Trilo per day using 2x 30mg capsules, which I guess is little more than 1mg/lb, so I'll be asking about that. I was told that Rio will need another ACTH Stim in 10 days.

Marianne, thanks so much for the Trilo links... I feel like I'm getting a decent crash course in it already.

Lori and Leslie, sorry about the use of the word "safer" out of context in my post. My vet did use the word “safer” but I took it to mean a “safer choice” for Rio given the challenge in diagnosing him with Cushings and any concerns over the irreversible effects of Lysodren should there end up being a problem.

Both my local vet and UC Davis vet are now confident that Rio has Cushings and have recommended treatment, but they have different opinions (perhaps 'preferences' is a better word) about which drug to try.

My local vet recommended Lysodren because he's more familiar and experienced with it. He didn’t have much to say about when Trilo might be a better choice, and he told us no problem if we’d prefer to try it instead of Lysodren. The Davis vet consulted with colleagues and recommended Trilo for Rio given the difficultly arriving at the Cushings diagnosis and for the reasons stated above. I understand that although Trilo can damage the adrenals, it's not designed to destroy the adrenal cortex as lysodren does irreversibly. My take-away was that Trilo provides a potentially ‘safer’ scenario in Rio’s case, should we need to pull back on treatment. It's because of this that I'm inclined to go with Trilo.

Also, I did read something about potentially serious consequences of an acute switch from Trilo to Milo. I was told by the Davis vet that this can be done safely if necessary with the proper wash-out period.

Both vets did explain that we must watch Rio just as closely on Trilo for the side-effects, and that we will need prednisone on hand in case of emergency. I understand I need to be equally vigilant in monitoring him during treatment. This will not be a problem since I’m within Rio 24/7 :). I'm already in the habit of measuring his water intake (and USG) daily for the last 2 months, which should help.

Again, thank you all so much for the feedback and support. I know I’d be feeling much worse otherwise. I’ll keep you posted.

abrazos,
christopher