Roller Coaster Ride of Emotion (11 y/o Sharpei) diagnosed Atypical/SARDS

[Sassy Sung]

I have an 11 year old Sharpei that has just been diagnosed with Atypical Cushings from UGA. Blood test results were sent to UT for evaluation. Before the results came back she was diagnosed with SARDS. My heart is breaking and I'm glad I found this site. They started her on 60mg once a day of Trilostane which her first pill was this morning. I have all test results and more time to tell my girl's story when I get off work today. I will be back. So glad to share with people who are going through the same thing.

[labblab]

Hello and welcome, although I'm so sorry your baby has been having these problems. We know from the experience of others here how challenging a dual SARDS/Cushing's diagnosis can be. I apologize for asking you a bunch of questions right off the bat, but your answers will help us with our suggestions and feedback.

First of all, can you fill us in as to timeframe? Did your dog exhibit other unusual symptoms prior to going blind? How long ago was the initial SARDS diagnosis made, and what kind of Cushing's symptoms is she exhibiting now?

The reason why I ask is that apparently it is not unusual for elevations of intermediate hormones to occur in conjunction with the development of SARDS. In some cases, though, the hormones normalize again all on their own. So whether or not Cushing's is truly a part of the picture does seem to depend upon time frame as well as the severity and pattern of the hormonal elevations.

You've said that your dog has been diagnosed with Atypical Cushing's. As a formal diagnosis, this would mean that her cortisol level is normal but she has elevations in certain other adrenal hormones. If this is her true diagnosis, I am puzzled as to why she is being treated with trilostane since that drug is known to actually elevate some of those hormones even further. UTK generally does not recommend trilosotane as a treatment unless a dog is instead diagnosed with conventional Cushing's -- abnormally elevated cortisol in addition to other adrenal hormones.

So I am wondering whether that is perhaps the case -- that your dog has elevated cortisol in addition to other elevations per UTK's testing of her entire adrenal profile. If so, this would not be an unusual finding since it seems as though all dogs with elevated cortisol also exhibit elevations in other adrenal hormones, as well. So for the moment, I'll assume that is the case and that is why she is being treated with trilostane. So a final question for you is, how much does your girl weigh (your answer helps us judge whether or not the trilostane dose is on the higher or lower side).

Again, sorry for all the questions. But we are really glad you've joined us!!

Marianne

[goldengirl88]

Welcome to the forum. I know you were pressed for time so when you get time would you post the abnormal test results? Also what symptoms you dog is displaying, and her weight. We all come here scared to death, so don't worry we will help and support you through this. Just be vigilant about watching your dog for any signs of trouble, like diarrhea, vomiting, lethargy, or not wanting to eat and you will do fine. It will be ok, it is scary at first I know, but you will get more confident and your dog can live out it's life while on treatment. Blessings
Patti

[Woodydog]

Just wanted to welcome you to the forum and tell you that this forum is ace and without the K9 angels here I wouldn,t have made it this far. So take a big deep breath and try and answer all the questions that are asked as it really does help. My pup does,t have cushings so I can,t help with that I,m afraid.

[Sassy Sung]

Strange things started with Sassy November of 2012. I came home from work one afternoon and Sassy was so slow to get up off her doggy bed. Once she was up, she walked real slow and we noticed her tail which is usually curled above her back was hanging down. When she would attempt to sit, she would get almost down and then she would act like she was scared to sit on her behind, so she would lean forward and lay down instead of sit down. At that time she starting drinking a lot of water and her nose was warm for days and it would drip clear every now and then. It was usually cool or cold. I could hear her breathing a little louder and that bothered me. She had some raw spots coming on her legs, which wasn’t a big concern too me because we have had issues with her and her skin sometimes. The Vet recommended that we only bathe her once a month because of her allergies and because she was a house dog. I used an oatmeal shampoo. Sassy has always had her monthly heart worm pill and her flea treatment. Up until November of 2012 she has been really healthy. Her weight was between 50 and 56 pounds and she was solid muscle. Anyway, I made an appointment with the Vet and he did blood work and checked some things and finally said she had a respiratory infection and severe dermatitis. He gave her a medicated bath and two weeks of antibiotics and wanted to see her back. Her breathing and skin got better but her tail still dropped down. The Vet didn’t seem concerned about that, but we were. After lots of research on the internet we diagnosed her ourselves with Cold Tail, and eventually it came back up. She slowly got better and started being her old self again. The first of September 2013, we noticed that Sassy was emptying out her self- feeder so much faster than usual. She has never eaten a whole lot at one time, just a little here and a little there. We could tell she was gaining weight and was drinking so much water at one stop again. Then we noticed she was sleeping all the time and not playing anymore. Her snoring got a little louder and she was not as steady on her feet. Once again I could hear her breathing and her nose was dripping some. This time we took her to a different Vet since she was having some of the same symptoms for a second opinion. They ran all kinds of blood tests and checked her out and they said her thyroid was a little off so they sent it off for further testing. After a week they said that she was okay. I waited a week and she continued to have the same symptoms and she was acting like she was disoriented some. We didn’t think she was seeing as good, or she was just being clumsy because she would brush up against things when she walked by things. We took her back to the Vet. They checked her and said that they had done all they could do. They just didn’t have the equipment to check her out further so they referred us to UGA in Athens. The Vet called and got us an appointment for October 2, 2013 with the ophthalmology department and October 3, 2013 with the internal medicine department. They work on different days, so we had to spend the night then due to other testing we ended up coming home on Thursday and went back to get her on Saturday morning. More to come...

[Sassy Sung]

When we picked Sassy up on Saturday, the had performed a Transtrachael Wash and found bacterial microrganisms in her specimen, mild neutrophilic inflammation with mixed bacterial organisms both intra and extracellularly and evidnece for superficial contamination. They started her on Doxycycline Hyclate 100mg, every 12 hours. She is still taking this medicine and they want to continue it for two more clears to clear up this bacteria in her lungs. They also did a catscan while they had her under and said that her lymph nodes were enlarged (which could be from lung infection), and her adrenal glands were also enlarged. Common cause for this is hyperadrenocorticism (Cushings) which was ruled out with her ACTH stimulation test. They said the adrenal glands produce many different hormones therefore testing for atypical adrenal disorders should be performed. The final finding on the CT scan was a liver mass. It is possibly benign but would not know unless surgery is performed. They didn't want to do this until they did the Adrenal disorder testing. Urinalysis tests showed Urine Source-Cysteocentesis, Color-Yellow, Turbidity-Slightly haxy, Specific gravity-1.017, Protein 2+, ph-8.5, Blood-trace, Ketone-neg, Bilirubin-neg, Glucose-neg, RBC-none seen, WBC-5, Epithelium-None seen, Casts-NS, Crystals-NS, Misc-Few Fat, Bacteria-NS I have all her blood work readings if you are interested. Let me know which ones you would like to know.

[Sassy Sung]

Sassys breathing got better and her heavy panting when we got home but everything else was the same. She continued to starve, drink lots of water, sleep and not want to move around, and then several days before we were to take her back for her adrenal testing, we noticed that she would stand in one spot and not want to move. We would call her and she would act confused and would not come to us. The opto had told us she was just getting old and it was like she needed bifocals, but we knew better. She started moving her head back and forth. As soon as we got her to her appointment, we had them call the opto over emergency. They looked in her eyes again and said they didn't see anything that would make her not able to see, but to be sure they would have to do a test where they put probes on her head and flash bright lights. If her retinas reflected the light it would send waves to the computer. When they did the test she flat lined.....There was no activity. My precious baby was blind and they labeled it SARD. It's like the lights just go off and never come back on. We were devasted. Bringing her home and having to see her bump into everything breaks our heart. She don't understand and unlike a human she doesn't left, right, up, down. We have covered all furniture corners with padding and made her a ramp at her doggy door. Since she has been in the same house for eight years she has an idea of paths, but when she falls asleep and wakes up she is so disoriented because she doesn't remember where she feel asleep and she gets severe anxiety and runs into everything. We try to hold her and talk to her until she calms down. Anyway they did the adrenal test and sent it to UT on October 14 and we got the results back on October 23. I will post her results the best I can. Comment: Androstenedione post=greater than 10.0 ng/ml......Androstenedione-Pre-2.61H....Range should be 0.05-0.57 Cortisol-Pre-17.7....Range should be 2.1-58.8 Cortisol-Post-97.8....Range should be 65-174.6 17 OH Progesterone-Post-6.67H....Range should e 0.4-1.62 17 OH Progesterone-Pre-0.30....Range should be 0.08-0.77 Aldosterone-Post-33.5L...Range should be 72.9-398.5 Estradiol-Post-71.7H.....Range should be 27.9-69.2 Estradiol-Pre-76.4H......Range should be 30.8-69.9 Progesterone-Post-3.60H.....Range should be 0.1-1.5 Progesterone-Pre-0.21....Range should be 0.03-0.49 Estradiol-Pre-76.4H......Range should be 30.8-69.9 Results indicate presence of increased adrenal activity (moderate). Several sex sterid values are elevated. Deviation from reference intervals is marginal to significant. Post ACTH aldosterone is below the reference interval. Occasinally, aldosterone may be related to sodium/potassium/water balance at time of testing. Various treatment options are attached for your consideration. That's when the doctor called and said she wants to put Sassy on 60mg of trilostane once a day and diagnosed her with Atypical Cushings. Sassy now weighs 64 pounds. Okay....so I hope I have given you all a good history on Sassy and what we are facing. I appreciate any comments or advice. I would really love to know what side effects she may have and warnings to get her back to doctor. Thanks so much for your support.

[labblab]

Thanks so much for your thorough reply, and again, I am so sorry that these problems have developed for Sassy. I have a multitude of thoughts running through my mind after reading more about her history. But I think the most important one, at the moment, remains my question re: the choice of trilostane as a medical treatment. Do you have the written treatment suggestions that UTK provided along with Sassy's lab results, and was trilostane their recommended option? If so, I would be very surprised, since it is not their typical recommendation in the absence of elevated cortisol. Here's a quote from one of their published data sheets:


Trilostane always increases 17-hydroxyprogesterone (some cross-reactivity with pregnenolones in assays??), and frequently increases estradiol and androstenedione as well. LysodrenTM may be preferred for Atypical Cushing’s cases.

Trilostane is an effective means of lowering cortisol, but Sassy's cortisol is not high. So I am puzzled as to why it is being recommended for Sassy given her hormonal profile. I would worry that it will drop her her cortisol too low and add another whole layer of issues to be dealt with. For treatment of elevated intermediate hormones, UTK usually recommends an initial trial of melatonin and lignans, sometimes followed with the addition of low-dose Lysodren or ketoconazole into the regimen. Sassy's post-ACTH cortisol response was only 9+ ug/dl, and honestly, that is already almost within the range that you are hoping to achieve with trilostane dosing. I would be very nervous about dropping her cortisol a whole lot lower, especially since you are starting at the dosage level typically recommended for a dog with conventional Cushing's (formula of 1 mg. per pound). Not to mention, there are specific warnings about giving trilostane to a dog with primary liver problems, and at this point, Sassy has been diagnosed with a liver tumor of unknown type.

So before starting the trilostane at all, I would ask the UGA specialist (whom I assume has prescribed the drug) what the rationale is for giving a conventional dose of trilostane to a dog with normal cortisol. Are they not concerned that: 1) the trilostane will cause further elevations in Sassy's intermediate hormones; 2) the trilostane will lower her cortisol too far? If nothing else, I would want to start at a lower dose of the drug.

One other sidebar note, I don't know enough about imaging to know whether a CT or an ultrasound is more likely to reveal adrenal abnormalities. All I know is that abdominal ultrasounds are recommended most often in the literature and by our members' vets. However, this may just be a result of cost -- ultrasounds are probably cheaper. So a CT may be the superior diagnostic tool. Anyway, I notice that Sassy's aldosterone was low, and that can be associated with an adrenal tumor. Also, dogs with adrenal tumors frequently present with normal cortisol readings on ACTH tests. For that reason, the LDDS is probably the preferred diagnostic blood test for evaluating conventional Cushing's when an adrenal tumor is suspected. Was there any mention at all, by either UTK or UGA, of the possibility of an adrenal tumor? You've said that the CT indicated enlargement of the adrenals, and bilateral adrenal enlargement would typically not be associated with a tumor in one adrenal gland (in that case, only one gland would be enlarged). But I am wondering how clearly the adrenals were actually viewed on the CT.

I still have some other thoughts, because poor Sassy surely does have a lot going on. But I'll leave things here for the moment, because starting the trilostane is really my primary concern right now.

Here's a UTK link that I think would be very helpful for you to read. And as you'll see, trilostane is not among their list of recommended treatments for elevated adrenal hormones other than cortisol:

http://www.vet.utk.edu/diagnostic/endocrinology/treatment.php

Marianne

[Squirt's Mom]

Hi and welcome to you and Sassy! :)

I wanted to second what Marianne is saying and take it a step further - there is no way in you know where that I would give Sassy Vetoryl (Trilostane) based on those hormone levels - not without some pretty substantial information from the veterinary community that Vetoryl (Trilostane) has somehow started lowering these hormones instead of raising them as previous studies have shown. I would need a great deal of proof and until I had it, my baby would not take Vetoryl (Trilostane), period.

I would do just as UTK recommends and start with melatonin and lignans, then if needed later, add Lysodren. Using Vetoryl in Atypical pups is simply illogical to me, a waste of money and additional stress on the pup. The Trilo may raise the OH17 Progesterone but it may also raise the other hormones in the process. Like Marianne says, I would want the vet's rationale for this approach thoroughly explained and backed up with current studies. ;)

You may find there is a great deal of controversy over Atypical Cushing's and the hormones associated with this condition. I, for one, have chosen to believe the folks who have studied this in depth and to follow their recommendations - that is the University of Tennessee in Knoxville. I have a pup who started out Atypical and we followed the treatment recommendations from UTK all the way....even tho early in the diagnostic phase I had decided I wanted her on Trilostane. As I learned more, I realized that probably wasn't the best option for our situation and am very glad we did not go that route. ;)

I'm glad you found us and look forward to reading along with yours and Sassy's story. We are here anytime you need to chat or have a question.
Hugs,
Leslie and the gang

[Sassy Sung]

Results indicate presence of increased adrenal activity (moderate). Several sex steriod values are elevated. Deviation from reference intervals is marginal to significant. Post ACTH aldosterone is below the reference interval. Occasinally, aldosterone may be related to sodium/potassium/water balance at time of testing. Various treatment options are attached for your consideration.

This is what the University sent to my doctor at UGA along with the test results. UTA did not give a recommendation. They left it up to the doctor to decide. This is day three of the medicine and so far we haven't seen any side effects. She is still eating like a stable horse and drinking lots of water. I am making notes as I can of when she eats, drinks, pee pee's, and poops. I am at work from 5:30 am to 4:00 pm, but my boyfriend is here until around noon before he has to go to work. He takes her for a walk every morning and she still seems to enjoy that. He just doesn't go very far because she gets tired so easy. I talked to him and let him read your post. We are scared, but we have done everything we know to do. You can't put a price tag on love, but we have already spent almost 4,000.00 and there are still blood test coming up after so many days of this medicine. We have to trust the doctors because we have no knowledge of this disease. I put a call in to her yesterday to see if she would give me her email address so I could forward the concerns posted on this site with Sassy. She didn't call me back. I will leave another message today. Thanks again to all of you. I look forward to your comments and concerns.

[goldengirl88]

The one thing that sticks out to me above all others in you current post is the sentence " we have no knowledge of this disease so we must trust our vet." Very bad move on your part. Never put blind faith in anyone. If you truly want to help your dog as it sounds like you do, you need to make time to educate yourself on this disease. You are the only advocate for your dog. Many vets have little or no experience with this. My vet didn't I had to tell him what was wrong with my dog. Now I know enough to watch his every move and tell him what need done. Never trust anyone solely but yourself, or you could be putting your dog at risk. Please I urge you to come on here and ask questions and get help for the sake of your dog. Blessings
Patti

[labblab]

None of us here are vets ourselves, and it's definitely true that you ought to be getting valid advice/instructions from the specialists at UGA. But since we are so focused here on a single canine ailment -- Cushing's -- we probably have witnessed the treatment of many more cases than any one specialist will ever encounter on their own. And so this is where our concerns and our questions kick in -- when we see treatment being suggested that doesn't correspond with the norm. I am not saying that there is not a reasonable explanation for the prescription of trilostane for Sassy. But the vet should be very willing to explain that rationale in greater detail.

From my own experience, I know it can be a pain-in-the-behind to talk directly with a specialist, especially during the day when they are involved in treatment, conferences, performing procedures, etc. But when starting a dog off on a drug as potent as trilostane, you need to have a mechanism by which to get timely answers. I've got my fingers crossed that you'll get an email contact, because that's a great method of communication. But if not, I found that the squeaky wheel gets the grease -- just keep calling and explain that for your dog's safety, you need to know that SOMEBODY will be returning your calls in a timely fashion, even if it is a tech who will convey the questions to the specialist. It is not OK to have to wait 24-48 hours when you are giving a drug that can induce serious, even life-threatening, side effects.

And when you do get ahold of the specialist, I'd definitely include those two questions:

Since Sassy's cortisol level is currently normal, are we not worried that a conventional dose of trilotane will lower her cortisol too much? Also, why are we giving trilostane when it is known to elevate intermediate adrenal hormones even further?

Hang in there!!!!! I know this all must feel so overwhelming right now. But each day you'll be learning a little bit more, and before you know it -- you'll be armed with a ton more info. And hopefully your vet will realize what a "plus" it is to converse with pet-owners who want to learn as much as they can about the care for their dog. :)

Marianne

[addy]

Oh dear, if I would have blindly trusted my vets or my mother's doctors, neither Mom or Zoe would probably still be here. The days of putting those in the medical profession on a pedestal are long over. I dont mean to lecture you but if you have no knowldge of what is happening to your pup, you need to start learning pretty quick because only you can be your dog's voice.

Sorry if I am coming on strong here but I urge you to consider what Marianne has told you and discuss it in detail asap with your vet and question away. Your dog's life may just depend on it.

[Sassy Sung]

Sassy's vet called me back while I was at work today and I couldn't get on the internet to get the questions I needed to ask her from you guys. I did ask her why she chose Vetoryl over the other treatments, and was it based on the blood test alone that she got back from University of Tennessee. She said that she did not go strictly by the blood work, because Sassy has other factors that played a part in her decisions. Her lung infection, her enlarged lymph nodes, the spot on her liver, her Sards, her age, and the species of dog that she is. She said that all of her history dated back since she was a puppy were all part of her decision on why she chose this drug. I told her I had other questions and she said she does not email. She told me to email her my questions to UGA and they would give it to her. She would then call me back. She apologized in the delay of response, but said that she did not want to call me after 10:00pm. So the questions that were just posted about the cortisol level and her hormones have been sent to my work email address and I will send them first thing in the morning. Day three and no side effects so far. She still sleeps alot, has a healthy appetite, and is drinking lots of water. This is all so new to me and I'm trying to listen and learn more. Her blindness has been so stressful to her and I and I hug her all the time and tell her I'm doing the best I can with what I know how to do. Thanks again for your comments and concerns.

[addy]

And you are doing the best you can and it will get easier:):)

[Squirt's Mom]

I'm sorry but your vet's explanation for choosing Trilo makes no sense to me but hopefully it does to those here who understand Vetoryl (Trilostane) better than I. To me, it's almost like saying, "We know you don't have diabetes but because of other things, we are gonna put you on insulin anyway." :o All I can say is please, please, please keep a very close eye on Sassy and do not hesitate to contact the vet if you see ANYTHING that seems to be off. And we will be here anytime to help as well.

Hugs,
Leslie and the gang

[addy]

Since Sassy's cortisol level is currently normal, are we not worried that a conventional dose of trilotane will lower her cortisol too much? Also, why are we giving trilostane when it is known to elevate intermediate adrenal hormones even further

You need to ask this question Marianne wrote, okay?

Unless your vet is using some study about Sards and Trilostane, we still are not understanding why Sassy is on it. I mean, there have been studies for alopecia x and the use of low doses of Trilostane but as Leslie said 1mg per pound is not a low dose.

Please ask your vet Marianne's questions okay? I think we are all worried that your vet is somehow misreading the UTK test results.

[lulusmom]

Hi and a belated welcome to you and Sassy.

As Marianne mentioned previously, dogs with SARDS most often do experience an increase in intermediate hormones, with accompanying symptoms much like typical cushing's, before or after diagnosis but these increases quite often normalize within several months. As for treating this condition with Vetoryl (Trilostane), internal medicine specialists seem to be prescribing this more frequently to alleviate symptoms. Dr. Mark Peterson, a world renown endocrine specialist, lists Trilostane as an option for atypical cushing's and explains it's effects on the intermediate hormones in his paper entitled Cushing's Disease in Dogs: Recommended Diagnostic Protocols and Treatment Options. I'm not sure we have this paper in our Helpful Resources Section yet but I'll check. In the meantime, I have attached a copy below.

794

There have been a few studies I've read where dogs with normal cortisol have received some pretty high doses, of Trilostane with no ill effects. That doesn't mean one should not be concerned about giving a dog with normal cortisol any dose of Trilostane, it means you have to be that much more vigilant in monitoring the dog for adverse reactions. Having had a bald Pomeranian, one of the studies I am very familiar with involved Pomeranians and Poodles with alopecia. These two breeds are at the top of the list of breeds that seem to be genetically predisposed to alopecia. Most have elevated intermediate hormones but are usually asymptomatic, which is why another renown specialist, Dr. David Bruyette, prescribes sweaters for his alopecic patients. :D The results of the alopecia study showed that Trilostane grows hair in most dogs and it's believed that's because of "down-regulation of adrenal steroids and/or of the noncompetitive inhibition of the oestrogen receptors at the hair follicle level." You can read an abstract of that study using the URL below:

http://www.ncbi.nlm.nih.gov/pubmed/15500480

I have a great deal of respect for Dr. Jack Oliver, who developed the recommended treatment for atypical cushing's at UTK and think he was one of the most compassionate man in the world. He passed away and is sorely missed by a lot of us. He was an amazing human being and helped so many of us on this site. For many years I steadfastly supported many of Dr. Oliver's theories but after doing much research, observing my dog and those of hundreds of others on this site, I no longer subscribe to all of his theories. I once spoke personally with Dr. Oliver about my bald Pomeranian and took the opportunity to ask him why so many in the veterinary community are skeptical of his opinion of Trilostane and it's effects on the intermediate hormones. His response was that veterinary dermatologists are hard sells. Apparently some internal medicine specialists are too. Unfortunately, UTK has done no peer reviewed studies/clinical trials and that certainly puts a damper on UTK's credibility with many vets (and me).

I hope this helps.

Glynda

[labblab]

I'm really glad that Glynda has added this information because I do think she's absolutely correct that many question marks remain regarding the clinical significance and appropriate treatment of elevated intermediate adrenal hormones. That is the reason as to why I would really welcome a more thorough explanation of the trilostane recommendation coming from the UGA specialist. As Glynda says, subsequent to Dr. Oliver's death, sadly we are privy to much less "background" info out of UTK. It may be the case that recent clinical experience of other vets/centers has met with success when using trilostane in a situation such as Sassy's. If so, it will be really helpful to us all if we can find out more about the actual mechanism as to how trilostane is useful when prescribed in this manner since UTK still does not seem to publicly endorse it.

In other words, I am really interested to hear your vet's answers to my two questions because there is still a lot there for us all to learn!

Marianne

[labblab]

Actually, I want to back up a step and address one of the other big questions I have about Sassy's diagnosis. You told us earlier:


The final finding on the CT scan was a liver mass. It is possibly benign but would not know unless surgery is performed. They didn't want to do this until they did the Adrenal disorder testing.
Can you tell us any more about the liver mass? I'm sorry to be raising even more question marks, but if it were me, I'd want to know more specifics about where the liver mass fits into the overall picture because if there is any likelihood that the mass is cancerous, it seems as though diagnostics re: that tumor would trump everything else. In fact, I would be wondering whether primary liver issues could be contributing to the adrenal hormone elevation.

Once again, there may be very reasonable considerations that are fueling the trilostane treatment ahead of everything else. But this is another question I would want to ask if Sassy was my own dog. I would want to know more as to the gameplan re: that liver tumor. Do you know whether or not her bloodwork shows abnormal liver values?

Marianne