My 5 year old Shih-tzu is newly diagnosed.

[Sam's Mom]

Hi,

I am new to this group and I would like to thank Katherine Beleto for reaching out to me and letting me know this existed.

I am very fresh to the pain, 8 days in, 8 days of anger and crying and complete confusion. I am no stranger to special needs dogs. I foster and I can run an IV and make a sandwich at the same time, I've had diabetic dogs, I have a little yorkie in my family that is in liver failure and is a mill survivor. I foster a 17 year old that is blind and deaf (he is a foster but he will remain here all his days). But this has brought me to my knees...

My 5 year old shih tzu that my son picked out since when he was 2 year old, has cushings and I can't-I just can't. Not a day has gone by since the news that I have been able to eat or think straight. I'm really really pissed, all I do for the doggies and this is what I get. Not fair! We only found out through pre op blood work to have a cyst removed from his eye that his liver value was at 800. Sam is a very shapely shih-tzu, a modest 25 lbs, also another clue that I did not know was a clue. He is always reavenously hungry, eats any dog poo he can get to, crys staring at the counter a good part of the day, but at his size that didn't surprise me.

Sam is a LOVE. He is never shy w the affection but is also a very stern alpha in this home teaching the fosters the way things are. He is nothing shy of amazing.

I've been on different sites and FB pages for days and my head is spinning. For every drug there seems to be a side effect that is actually worse then what the drug is for. Sam can walk 2 miles 2x a day. Why would I want to give him meds to make him tired, to lose his hair, itch, vomit, the runs, to possibly make him unable to walk? Would I choose to do this to myself if I were sick? NO!

So here is the confusion. He is only on denamarin at this early point of the game. We go back in three weeks for more thorough testing since the initial tests were really just for pre op. I will obviously know more then but I would have to think at this point, right now, starting to medicate him and change a quality of life that is great would be the wrong thing to do.

IDK. IDK I just don't know!!!!!

[judymaggie]

Hi and welcome to you and Sam! First, thank you for taking care of special needs dogs. Next, take a deep breath ... the folks here will walk right beside you through the diagnostic phase and, if Sam is found to have Cushing's, through treatment. We are not vets but have learned the ins and outs of this disease through our own personal experiences, research conducted by experts in the field as well as the experiences of the members. I know that researching on the internet can open one up to all sorts of misinformation -- I would suggest that you start reading the articles in the "Helpful Resources" section.

But this is premature -- you are in the very early diagnostic stages since it appears that only a chem panel was run. The symptoms that Max is showing can also be seen in other conditions, such as thyroid and diabetes. If you would, please post the highs and lows that showed up on the recent tests as well as the normal range, i.e., ALT 230 (range 100-150).

Do you know what tests will be run in three weeks? Give Max a big hug from us and try to stay away from the "what ifs"!

[Sam's Mom]

Thanks for your kind words. I will get a copy of the blood work when I go back on Friday to get his stitches out. The vet mentioned there were a couple different blood work ups we could do to test for the Cushings, he did not say I needed a complete panel
Again. He wanted Sam to be on the denamarin 30 days before the test.
What, in your opinion, is the test I should ask he run? My head was spinning when I left and he may have said, I was not computing.
We are working hard to add a third 2 mile walk to his day to get his weight down--- one lb so far.

[Joan2517]

Hi and welcome also. I am new to this site and know just how you feel. Lena and I started this journey in December and my whole life, as I knew it, changed. I still cry and I am still angry.

She had never been sick in her almost 15 years. I don't even remember her having a cold. Slowly over the last few years the symptoms crept up on us, so subtle that they did not register...trouble with the stairs, eating a lot, pot belly, not able to take the heat anymore, no poof in her tail after grooming, peeing in the house, not wanting to walk as far. And then the things that I did take her to the vet for...bloated and gassy, panting a lot, eye infections, stomach problems, dry, cracked nose. Blood work came back fine.

Then she had dental work. Again, blood work was fine. Less than 2 weeks later, she started getting up around 4am, wanting to go out and drinking so much water that the alarm bells went off in my head. Took her to the vet and they thought diabetes, so more blood work. It came back so bad that this vet was stunned. Ultra sound showed an adrenal tumor on her right adrenal gland too close to the kidney and the vena cava, so too dangerous to operate, and she had high blood pressure. I was in shock...I still am.

She had the low dextrose blood work to confirm and we started the Vetoryl at 10mg, then 20mg and she is now at 30mg.

I too googled, researched, saw that she had almost every symptom of Cushing's and cried all the time...and then I found this site. They have reassured me, informed me, taught me and let me go on and on with my fears and guilt over what I should have done and what I am doing now.

I now have hope,which I didn't at first. I have knowledge to not blindly expect my vet, or any vet, to know everything, and I have a place to go to vent my sadness and my fears. We all know what you are going through and we all feel the same things you do.

You are not alone....
Joan

[tank&kat]

Welcome! I'm so glad you joined. If liver enzymes are still high in 3 weeks, the first test you want for Sam is the UCC, urine cortisol creatinine ratio. It is a simple urine test that can rule out Cushing's as a differential diagnosis if the results are normal. If results are elevated, then further diagnostic tests would be necessary.

Do NOT believe the 2 year survival rate for cushingoid dogs after they begin treatment. This number is mainly for older dogs. I know of many dogs Sam's age, even younger, that have lived 5+ years while on trilostane or mitotane. In fact, when dogs reach the 6 month point in treatment, there is a very good chance they will die from something unrelated to Cushing's.

After taking trilostane for a month, my dog was able to run with other dogs at the park for a good 20-30 minutes without needing to rest. Before meds, every 5 minutes he was on the ground panting excessively from exhaustion. I honestly believed he wouldn't make it through the summer. I never experienced a greater feeling in all of my life as I was watching him run that day. That was 6 months ago and today he still has that same amount of energy.

Something as small as him wagging his tail for the first time in nearly a year made me cry. Not only did I know he was going to stick around for a while, I knew he was happy again.

Try to enjoy the next few weeks with your boy...focus on the moment. Be proud that you sought out help and If you have any questions, know that we have the answers. I can tell you love all of your foster dogs as if they were your own kids. Thank you for taking such good care of them.

https://www.veritasdvm.com/documents/24501/56065/1346421998710_24501_210.pdf

~Katherine

[Sam's Mom]

Hi everyone and Thank you for responding,

Judy Maggie,

The only number I was told at the time was that his Liver ALT was 800 and the max should be 150. That coupled w Sam's shape and appetite are just beginning indicators. I am hoping the denamarin brings this level to an acceptable level. If it does I would assume I still need further testing or is it a "come back in 3 month or 6 months" idk at all the next move. The appt is very blurred to me now.

Joan,

Lena sounds like an amazing girl, she's been through so much, a fighter! I have seen a lot about the Vetoryl and it really seems like the standard drug for this condition. I have seen that some people use Trilostane instead (the coupounded name). Do you or does anyone have any opinion on using this instead of or is it the same? All I have heard is the Trilostane is a good deal cheaper but I was wondering if it is the same or not.

Also, I have heard great things and not great things about Vetoryl This is where I am having my most fear. I am afraid that the side effects of not only this drug but other for this condition will actually give Sam side effects when he really doesn't have any. I have read things about this that would steal who Sam is, he loves playing, running, chasing the other dogs etc... I don't want to steal who he is. Since there is no cure and only things to manage this disease, I wonder if I should wait to medicate until he NEEDS it and not now.

Kate,

Ok I see you went the Trilostane route...that is what I was wondering. You see as if you are happy w it. Are the side effects listed everyone know to man just like the Vetoryl? I would be interested in knowing if it is the same horse just a different color or if there are differences in them. How old is your he? Did you see any negative side effects or was it all good for you both? Is he on other meds as well or is this sufficient in his management at this time?

I want to Thank all of you for your replies. I wish I was on a site looking for a vacation---oh that's another question...I am supposing the very thought of leaving our babies w anyone else ever once that diagnosis is there is out of the question? God Willing, he will be with me 12 more years and I guess I can see Jamaica then? Are we tied to our homes now besides the small daily trips we do? It seems like a selfish and pety question but I have elderly parents in Florida and I used to use a dog sitter but now I think that would be out of the question. Thoughts?

Thanks you all so much for being so welcoming....

[Joan2517]

Lena was so symptomatic that even though I worried about the side effects, I didn't know what else to do. My vet never mentioned the compounded version. I was in touch with a woman from my PRVT group who first mentioned it, but I was so shocked that I never asked about it. I heard about it here after I joined. I don't think I will go higher than the 30mg no matter what the next blood work shows.

Lena wasn't doing much of what she used to do anymore anyway and the vet said that Vetoryl was the only treatment, so that is why I chose this route. She has started to follow me around again, she wants to sit on my lap again and follows my lead like before, so I think this was the right choice for us....

Do I worry every day? Yes.
Am I sure about giving her something that I have to wash my hands after using? No.

Until I know more about all of this, I will have to trust that I have chosen the right route for my darling girl, who I would do anything for.

You will make the choice that is right for you. I am still so new at this that I can only tell you that this is the group who will help you.

Best,
Joan

[tank&kat]

Sorry about that...my dog takes vetoryl right now. The vet calls it trilostane plus on the box, vetoryl is written in large letters and the word trilostane is directly underneath it in parenthesis.

Tank is 14 years old. He didn't have any adverse reaction to the drug. If you hang around in the facebook group long enough or any Cushing's group for that matter, you will see the dogs that do have problems either have a sensitivity to the drug and have to stop it altogether or they were given too high of a dose and began going in the opposite direction by not producing enough cortisol (over suppression) The only other thing he is taking is the joint supplement, cosequin ds.

What would be some of your concerns leaving him with a sitter if he were to have Cushing's?

~Katherine

[labblab]

Hello and welcome from me, too! Everybody has done such a marvelous job of welcoming you already; I have just a couple of thoughts to add in.

Of course the first step is seeking additional confirmation that Cushing's is truly Sam's problem. But leaping ahead, there are varying opinions re: beginning treatment in the absence of uncomfortable overt symptoms. One of the biggest worries in that regard actually takes us back to Square One: since there is no single definitive test for Cushing's, there is always a bit of lingering doubt as to the accuracy of the diagnosis for a dog that does not exhibit several of the classic symptoms. However, we have read that some expert endocrinologists especially recommend starting Cushing's treatment in dogs who test "positive" and who exhibit either high blood pressure or significant protein loss in their urine, even though there is a lack of other overt symptoms. This is because untreated chronic hypertension and proteinuria can cause other serious problems in dogs, just as they can in humans. For a very senior dog, you might worry less about halting slow, chronic damage. But for a younger dog of Sam's age, you are hoping that he will be able to live out his normal lifespan without developing chronic systemic damage from longterm elevations in cortisol. As I say, I'm putting the cart ahead of the horse, here. But I'm just wanting you to be aware that there can be reasons to move forward with treatment in a young dog, even if overt symptoms are not particularly troubling.

Secondly, just to clarify a bit about "trilostane" and "Vetoryl," trilostane is the active chemical ingredient in the brandname product, Vetoryl. Worldwide, Vetoryl is currently the only licensed veterinary version of trilostane; there are no generic versions available for sale at this time. In the U.S., individual pharmacies do prepare individual "compounded" versions of trilostane on a special-order basis. Compounded trilostane can only be prepared in dosage strengths that are not available in brandname Vetoryl, because legally, the licensed drug must be prescribed and sold if it is a suitable dose for a dog to take.

Many of our members through the years have been quite satisfied with compounded trilostane, and in situations where cost makes Vetoryl a hardship or where an appropriate dose simply is not available, I think compounding serves an essential purpose. However, during the past few years, a couple of studies have shown a fair degree of variability in some trilostane compounds (pharmacies unnamed in the studies). Dosages have varied considerably from what was labeled, and/or effectiveness of delivery was inferior. So my own recommendation to folks is this. If you can afford the cost of brandname Vetoryl and your dog is prescribed a dose that is available, I would start with the brand product. Once your dog is stabilized, if you need to make a change due to cost, you will have a basis of comparison for the effectiveness of the compounded product. If your dog continues to do just as well, great! But if not, then you may have reason to suspect that the compounded med is not effectively replacing the Vetoryl. As I say, just my two cents worth, for you to take or leave. We do have lots of folks here who use compounded meds, and Diamondback Drugs in Arizona is one commonly used provider among our members.

Once again, I'm leaping ahead right now since we're not even certain about Sam's diagnosis. But I know you are full of so many questions, so hopefully it will ease your mind a bit if we go ahead and discuss some of the issues that are concerning to you.

Marianne

[Sam's Mom]

Katherine,

I guess down the road once I have digested all of this and know his diagnosis and his reactions to the meds that will be a decision we can think about. Right now It feels so out of the question.

[Sam's Mom]

Marianne,

Thank you so much for your response. I do like the idea of (if Sam needs Vetoryl) trying that before Trilostane so I can compare the two. Unfortunately, cost is a factor. We will do everything that Sam needs outside of financially ruining us as we do have 2 young kids and I am a stay at home mom. Plus, have 6 dogs can be quite an expensive venture in itself. Even though the Rescue pays for the medical expenses of my fosters, I provide all the food and treats, toys and beds...I can't treat them any different then my own.

I appreciate your great insight!

[lulusmom]

Hi and welcome to you and Sam.

I am glad that Katherine recommended that you join us here at k9c. When I read that you foster for special needs, I remembered you from the facebook group. I am a life long senior and special needs rescuer/foster so that caught my eye.

Because you are so distraught over a possible cushing's diagnosis, I have to believe that your vet or somebody else has told you some terrible horror stories. If a pet owner takes the time to educate themselves and the vet is experienced. or is willing to consult with someone who is, there is rarely, if ever, a horror story to tell. I have shared my life with my own two cushdogs, one of whom was a foster I adopted, and I've also fostered two cushdogs, one of which was a little black and white Shih Tzu. All four were correctly diagnosed and their disease was well controlled with treatment. I promise you that there are a lot of worse things that can befall a dog. If, and that's a big if, Sam even has cushing's, with treatment, he can live out his life expectancy with a very good quality of life. Cancer and very painful degenerative disc/joint diseases are two conditions I am very familiar with and have provided hospice care to dogs whose lives were cut short by these catastrophic conditions which truly can prove to be horrific diagnoses.

Cushings is far from catastrophic as long as it is correctly diagnosed and effectively controlled with treatment. I hope you can refocus the devastation you feel on learning more about the disease so that you can 1) become the best advocate for Sam, if he is ultimately diagnosed with cushing's and 2) become one of very few expert special needs foster who can help educate others on why cushing's doesn't have to be a death sentence. Many dogs with cushing's end up in shelters and are euthanized so your voice can help save lives.

I believe you mentioned on facebook that you were going to collect a copy of the blood chemistry that reflected the elevated ALKP. Dogs with cushing's usually have more blood abnormalities than just ALKP so if you could please review those results and post any other values that are high and low, including the normal reference ranges, that would help greatly. I'm sure that as a special needs foster you keep a folder for all your foster pups so hopefully it's at your fingertips.

There are a lot of other conditions that can cause an increase in ALKP and there are even times when it's elevated for no apparent reason and returns to normal. Hopefully the Denamarin will help bring it down and you can breathe a big sigh of relief. If not, we're here to walk with you through any diagnostic tests and help you learn what you need to know so you can help your vet facilitate safe and effective treatment.

We'll be looking forward to the results of the blood chemistry.

Glynda

[Sam's Mom]

2 weeks and holding until Sam's next appt. to get answers on whether this truly is cushings or not. Its crazy, all the things he does, that I just thought was a "Sam Thing". Now I am thinking twice. How he gets me up at least 3-4x a night to go outside to urinate. How he finishes the water bowl over and over again during the course of the day/night. How he stares at the counter and cries all day/night for food. I never thought anything of it.

Every time I mention cushings to someone they catch their breath and then continue to tell me a story about how either their dog or their friends dog died from it and what an awful disease. I am just praying the denamarin is doing its job and that there has to be a mistake.

[Sam's Mom]

Glynda,

Thank you for your very reply. I will be taking Sam up that way in two weeks and I will def post the first results as well as the new ones at that time. I use a vet that is about 45 minutes away, I found them through the rescue and he is wonderful, worth the trip! I did foster another dog named Amy about a year ago w cushings, she was a lot of work! Panting all night, I don't think she ever slept, urinating everywhere. She is still going! I am babysitting her next week.

The devastation of this being our dog somehow hit harder then the fosters. I love them all very dearly...I just can't believe it could be Sam! Not Our Baby!

[labblab]

Every time I mention cushings to someone they catch their breath and then continue to tell me a story about how either their dog or their friends dog died from it and what an awful disease. I am just praying the denamarin is doing its job and that there has to be a mistake.
Well, then, this is why we're so very glad you've joined us!! We have so many members who are enjoying years of companionship with their Cushpups, long after diagnosis. Of course, treatment for Cushing's cannot alter inevitable changes from aging or problems caused by other diseases. And just like with any chronic condition, there can be a rollercoaster ride of ups-and-downs. That's why I believe that sharing in support with other parents can make all the difference in the world. Without this support, sadly, I fear a lot of parents just give up and think the disease is impossible to manage. But we know otherwise. If Sam does have Cushing's, you'll be amazed at how much you'll learn here and how much you'll end up sharing with all the rest of us. You and Sam can both do this! Really, you can.

Marianne