Alex, 9 year old Pom - sweet Alex has crossed The Bridge

[Cindy Thoman]

Alex was just diagnosed with Cushing's. Current symptoms are elevated liver enzymes, diluted urine, extreme hunger, skin changes, and hair loss. He is on medication for Thyroid and Seizure disorder. He is 10 pounds and has a history of GI problems due to stress. We will be starting him on 10 mg. of Trilostane this week. I am very concerned about possible side effects of this medication.

[lulusmom]

Hi Cindy and welcome to the forum.

I have two Poms, both cushdogs, so it's nice to meet another Pom lover. Neither of my two dogs have stress issues and are relatively calm at the vet. My first cushdog, Lulu, had every test in the book, all of which were consistent with cushing's so I wasn't concerned that stress may have yielded a false positive low dose dex test or acth stim test result. Can you tell us which tests were done to diagnose Alex and can you also post the results of those tests here? If you don't have copies of the tests, your vet should be happy to give them to you. Most of us members, keep our dogs' medical records in a folder. These come in handy if you ever have to take Alex to an emergency clinic and they are also handy for when we bug you to post the results. :D

My dogs have treated with both Trilostane and Lysodren and did well on both. The starting dose your vet has prescribed is perfect. While it is not yet in their packaging insert, the manufacturer of Vetoryl has changed their dosing recommendations to 1mg per kg. UC Davis has done their own studies and recommend starting at 1 mg per lb. My Lulu weighs 4.5 lbs and she was started on 20mg once a day and eventually needed 30mg once a day to stabilize. My Jojo weighs a bit under 7 lbs and he started with 15mg twice a day and stabilized on that dose.

We have a lot of great reading material on Vetoryl (Trilostane) in our Helpful Resources section and I suggest that you start educating yourself about the drug and the disease. I've included a handy link to the info on Vetoryl below and once you're there, take a look around at all the other reference material.

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

I'm sorry for the circumstances that brought you here but I'm glad you found us. We're here for you and will help you and Alex in any way we can. You're not alone in this.

Glynda

[Cindy Thoman]

Glynda, thanks so much for the quick response. I am new to this forum and not that great on the computer. I am still trying to figure out how the site works. Alex had a high dose Dexamethasone Suppression test. He tested positive for Pituitary Cushing's. I think the diagnosis is correct as he has several symptoms of Cushing's. I am waiting for the medication to get delivered to the house this week. I think he will probably start the medication Thursday. I will keep you posted on how he does. I am very thankful that I found this site as this is a very scary time for my husband and I.
We also have a 10 month old Pomchi. Our dogs are such a huge part of our life. Thanks again.

Cindy

[lulusmom]

Cindy, I do understand how dogs are a huge part of our lives. I never had two legged kids so my dogs are my kids. I'm thinking that putting two legged kids through college would have been cheaper than what I've spent in vet bills over the years for my toy babies. I seem to be a special needs dog magnet. My first Pomeranian had low thyroid, two bad patellas and heart problems. My first Maltese had hepatitis, pancreatitis and kidney failure. I know that at least one of my past gp vets retired early thanks to me. :D

Please do still get copies of the the LDDS and post the results here. We like to have as much information as possible so that we can provide you with meaningful feedback.

We're here for you so you and your hubby try not to stress out over this. Your vet is taking a conservative approach and that is a really good thing. I'm sure Alex will do just fine. There are a few things you should remember. Always give Alex his medication with a meal and when you take him in for his acth stimulation tests, make sure you have him to the vet within 3 to 5 hours of dosing. UC Davis recommends 2 to 3 hours and Dechra, the drug manufacturer, recommends 4 to 6 so 3 to 5 is a happy medium. The last tid bit is that most dogs are really sensitive to the drug in the first week or so and cortisol can drop rather rapidly. Sometimes this causes them to feel kind of yucky and this can be mistaken for low cortisol. A dog with cushing's has had this feel good steroid, cortisol, coursing through their body for a long time and if you drop the levels rapidly, it makes sense that the dog will go through some form of withdrawal. This usually corrects itself as the dog becomes accustomed to having normal cortisol once again. That's not to say that Alex is going to experience this but knowledge is power.

If you've got a 10 month old Pomchi, you have got to have your hands full. All of my babies are seniors but the last young foster I had was a PomChi named Spanky. The shelter had him listed as 8 months old but he was more like 4 or 5 months and oh my gosh, was he ever a handful. He was a pill but I loved him and still do. If I'm ever in the area where he lives with his forever family now, they bring him to the store to see me. I don't think he'll ever forget me. As soon as he sees me or hears my voice, he goes crazy trying to get to me. It's a wonderful feeling to be remembered and showered with love. :D I love all my foster babies and am so grateful to the adopters who keep in touch with me.

Glynda

P.S. You're doing a great job of navigating the site. After all, you've managed to post twice. That's better than I did when I first joined. If you can't figure something out, let us know and we'll walk you through it.

[apollo6]

Dear Cindy
Welcome. Sorry about all the health issues your sweetie Alex has. My Apollo is 12.5 years old weighs 10lbs. and has been on Trilostane 10mg. for months and is doing well . I am glad Alex is starting low.
The nice thing about Trilostane is you can stop right a way.
The common side effects would be vomiting, loss of appetite and lethargy. If this does happen, call the vet right away and stop giving Trilostane. Your fears are normal. It took me months before I would start. We are hear for you.
Hugs Sonja and Apollo.

[John II]

Dear Cindy & Alex,

Welcome! :)

The first dose is always the hardest, it's a very scary moment. It made me sick with worry. :o

But in it's favour, Trilostane wears off fairly quickly. When I started with Angelina, I'd give her a dose at 8am and she'd be back to panting by 4pm - well short of the 12 hours I was told to expect.

My advice would be to watch Alex like a hawk (while trying not to drive yourself crazy - like I did). Get yourself a notebook and if you can, start making notes of what's "normal" for Alex before you start the Trilostane (how much water he drinks - how eagerly Alex eats his food - I used to time it! :rolleyes: that kind of thing) so you'll have some basics to refer back to.

Good luck, best wishes and we're here 24x7 if you need advice or support.
(hugs)

[John II]

Sorry Cindy!

I didn't realise I was a week late with the advice! :o

[Cindy Thoman]

Hi guys, Alex had his ACTH Stimulation test today. I do not have those results yet but I did get a copy of his latest test that were done last month. I don't know how to copy the results so will give you some of the flagged results and you can ask about others if you need them.
Urinalysis - Specific gravity - 1.009
Chem 27 - ALK. PHOSPHATASE - 2267
GGT - 15
CBC STANDARD
RBC - 9.77
HGB - 22.5
HCT - 63.2
EOSINOPHIL - 0
ABSOLUTE EOSINOPHIL - o
T4 - 0.9
baseline CORT- 7.1
4 hour - 0.7
8 hour - 0.5

The vet should call me back today or tomorrow with today's results. I will post when I get them.
Alex's meds include Thyroxine 0.5mg - 1/2 tab twice daily
Phenobarbital 16.2 MG 1 tab in morning and 1 1/2 tab at night
Alprazolam 0.5 as needed for stress
Trilostane 10 mg
Hoping for some good news from the vet. I have not noticed any changes in the 11 days he has been on the Trilostane. He cries and begs for food about every 1/2 hour throughout the day. He is ok at night.

[labblab]

Hi Cindy,

I only have a moment to reply, and I wanted to focus on the LDDS results that you have posted. Can you double-check the numbers that you posted for the LDDS to make sure they're transcribed correctly, and also tell us what was listed on the lab summary sheet as the normal reference range for the LDDS? Typically, it is in the neighborhood of 1.3 or 1.4 -- and the 8-hour test result has to be HIGHER than that in order to be consistent with a Cushing's diagnosis. Since Alex's 8-hour result was only 0.5, I am confused about the diagnosis.

Here's a link to a discussion of LDDS test interpretation:

http://veterinarymedicine.dvm360.com/vetmed/Medicine/ClinQuiz-Interpreting-low-dose-dexamethasone-suppr/ArticleStandard/Article/detail/580093

Thanks for this additional information!
Marianne

[Cindy Thoman]

Mariaane, I don't understand any of this but the numbers are 7.1, 0.7, <0.5.
4 hour<1.5ug/dL or 50% of baseline and 8 hour>1.5ug/dL and 50%of baseline - Consistant with PDH
4 hour>1.5ug/dL and 50% of baseline and 8 hour<1.5ug/dL or 50% of baseline - Consistany with PDH
Both 4 and 8 hour< 1.5ug/dL or 50% of baseline - Consistant with PDH
Both 4 and 8 hour> 1.5ug/dL and > 50% of baseline-
Further testing required to differentiate PDH from adrenal tumor.

Now I am really confused?

[Cindy Thoman]

Just wanted to add one thing, I read the link that you sent and was just wondering if a low dose test and a high dose test are any different?
Thanks,
Cindy

[labblab]

Oh Cindy, I'm very sorry for the confusion! Yes, there definitely is a difference between a High Dose test and a Low Dose test. I wasn't paying enough attention to your first post and just assumed that the results that you were giving were for a Low Dose test. Mea culpa!!!

Marianne

[labblab]

Cindy, I'm back again to muddy the waters...:o

Is the High Dose Dex test the only blood test that was performed on Alex to diagnose his Cushing's? Was it preceded by either an ACTH stim test or a Low Dose Test? If the High Dose test is the only blood test that was performed, then I am back to feeling concerned again. Because the results of the HDDS can only be interpreted meaningfully if a general Cushing's diagnosis has already been established via one of the general screening tests: either the ACTH or LDDS. The HDDS can only be used to try to differentiate the type of Cushing's -- not whether or not a dog has Cushing's in the first place.

Marianne

[Harley PoMMom]

Hi Cindy,

I, too, am a little concerned. According to Dr. Feldman, a renown Cushings expert:


Diagnosis of dogs with signs of Cushing's syndrome that are receiving anticonvulsant medication can be confusing. Such medication (primidone, phenytoin, phenobarbital) can cause polydipsia, polyuria, polyphagia, lethargy, increased serum liver enzyme values, and abnormal plasma cortisol concentrations. The clinician must be cautious when establishing a diagnosis in dogs taking these medications.

http://www.io.com/~lolawson/cushings/articles/feldman4.pdf

How long has Alex been taking the Phenobarbital? Is your vet aware that taking this seizure medicine can cause these similar Cushing-like symptoms? And also may skew the results of some these tests?

Love and hugs,
Lori

[Cindy Thoman]

I just got off the phone with the vet and he said that today's test results are 2.5 baseline and 7.4 post test.

Alex did not have an ACTH or prior low dose test. He is aware that the phenobarb can also cause the same signs as Cushing's. He said his gut is telling him it is Cushing's. He said because Alex is tolerating the medication he would like me to stick with him on this for another 30 days. I am to call him at the first sign of any problems. At this point he feels the Trilostane is not hurting him and does not want to stop prior to the 30 days. If need be after the 30 days he said we can stop the medication and then do a ACTH test after 30 days.

Does this sound like a reasonable plan?

XOXO
Cindy and Alex

[Cindy Thoman]

I forgot to add that Alex started the Phenobarb 9/10. The increase in appetite did start after the Phenobarb but the hair loss started slowly in 08.

[labblab]

Cindy, I am not a vet and therefore can only offer my personal thoughts and concerns. But I continue to feel very worried about your vet's approach. I am so glad that Lori has brought up the phenobarb issue. Because I think that phenobarb has ramifications regarding both Alex's symptoms and also the HDDS results. I know that phenobarb renders LDDS test results inaccurate. I will try to do some more research later today, but I'm willing to bet that it would therefore also affect HDDS results. Regardless, as I've already said above, the HDDS cannot be used to diagnose Cushing's anyway. I believe this is because dogs without Cushing's may exhibit some of the same test results that are being used to differentiate the two types of the disease. That is why you need to feel certain that the overall Cushing's diagnosis is accurate before you even run the test. I believe I am correct about that part, but once again, I'll try to find something in writing that will confirm whether or not that is correct.

Also, I am just beginning phenobarb treatment with one of my dogs who does not have Cushing's. Having had a Cushpup in the past, I can tell you that, outwardly, my seizure girl is looking exactly like my Cushpup :o. She is thirsty, hungry, peeing up a storm, and is having some hindleg weakness. I am assuming that the lethargy and weakness will subside within the next couple of weeks. But I've been told that the thirst and hunger may always remain. Have all of Alex's symptoms aside from the hair loss begun since starting the phenobarb? Also, I see that Alex is receiving thyroid supplementation. Low thyroid function can be responsible for both skin and coat problems. So it may be the case that all of Alex's symptoms could be accounted for by either the phenobarb or unresolved thyroid issues.

So to me, the bottom line is that you are treating Alex with a very powerful medication -- trilostane -- without any prior confirmatory test results. I believe the ACTH is not affected by phenobarb, so I would wonder why your vet chose to perform an HDDS (which can't be used to diagnose Cushing's, anyway) instead of a diagnostic ACTH prior to beginning the trilostane. It seems as though there could be alternative explanations for all of Alex's symptoms (did the excessive thirst and urination also begin after the phenobarb?). Last but not least, if Alex truly does have Cushing's, phenobarb may not be the anticonvulsant drug of choice. We have had other trilostane users here whose internal medicine specialists preferred the use of potassium bromide in lieu of phenobarb.

If Alex were my dog, I would want to get a second opinion before launching into trilostane treatment. And due to the complexities of Alex's situation, I'd prefer a consultation with an internal medicine specialist who has additional training and expertise in handling complicated diagnoses and treatments. Starting such a serious treatment based solely on my vet's "gut instinct" would make me very, very nervous.

Marianne

[frijole]

Cindy, I can attest first hand that these tests can be false. Throw in the phenobarb and I agree.... I would get a 2nd opinion. Also, just wanted to make sure your vet gave you prednisone to have on hand while giving the trilo. Your little one is such a tiny thing... and so cute. I know this is alot to throw at you and it is tough... I had to switch vets too and it isn't easy but I knew I was my dog's voice and I had no choice.

Hang in there. Kim

[Cindy Thoman]

Marianne, Kim, and Lori thanks so much for your input, you have given me alot to think about. If I were to stop the Trilostane how long would I have to wait before doing a ACTH test?
I don't think there are any Internal specialist in my area, I will look into it. One of the problems with Alex is that he gets so stressed having to go in the car even when medicated. In the past the stress has brought on significant GI problems which are hard to get under control once they start. My vet is only 5 min. from us.
The vet does agree that the Phenobarb and thyroid could explain Alex's symptoms.
I did read somewhere that Trilostane was used to treat hair loss in Poms. If that is the case then his hair loss could improve on the meds but not indicate Cushing's?

XOXO
Cindy and Alex

[jmac]

Hi-
Unfortunately, I don't have much I can offer, but I agree that you may want to dig deeper before treating.

My 12 year-old Shih Tzu, Hannah, has some symptoms of Cushing's (increased thirst/urinating, increased appetite) and her blood test prior to her dental showed an extremely high Alk Phosphate level, which led my vet to suspect and test for Cushing's. He did the LDDS test and it showed a positive result. This was about a month ago. She is on no other medications and has no other issues. She has been on Anipryl for about three weeks (I know the likelihood of this working is not high, but like that it is low-risk so we decided to start here just to see).

Anyway, it has been driving me crazy that I don't know exactly what is going on, so we are having an ultrasound done tomorrow to look into it further. (Hannah also has lost weight, not gained, and has no physical signs of Cushing's, which is also why I want to dig deeper).

The reason I wanted to reply to you is because although my vet seems pretty certain Hannah has Cushing's, he told me that before he would begin treatment with Trilostane (or anything more than Anipryl) he would want to do an ultrasound to be even more certain of what we're dealing with. (They also have contacts with IM vets so they can send people with tricky/strange cases). We were going to wait a few months to do that, but as I said, I just want to know.

If I were you, I would really want more to be done to see what is going on, especially since there are other things that could be causing these signs (and you have such a little pup!). Good luck to you! :)

Julie

[Squirt's Mom]

Hi Cindy,

I want to share my Squirt's story with you.

Cushing's was suspected after blood work was done prior to having a dental. Squirt had the LDDS, HDDS, ACTH, 2 ultrasounds and the UTK panel done. All five tests "confirmed" pituitary dependent Cushing's (PDH). HOWEVER, the IMS who did the second ultrasound found a splenic tumor. Once the tumor and half her spleen were removed, her cortisol levels returned to normal and have stayed within normal range every since. This surgery was in Sept. '08.

The stress on her body from that tumor was causing her cortisol levels to elevate as a normal response to physiological stress. This is what cortisol is supposed to do in such situations.

Her UTK panel diagnosed her with Atypical Cushing's, which is a form of Cushing's in which cortisol is normal but some or all of the intermediate hormones (called sex hormones) are elevated but the cortisol is normal. Poms are Nordic breeds and these breeds are prone to Atypical Cushing's - which causes the same signs as true Cushing's. The University of TN in Knoxville (UTK) is the leading research facility on Atypical Cushing's guided by Dr. Jack Oliver. Dr. Oliver does not recommend Trilostane for Atypical pups as this drug has been shown to cause elevations in some of the intermediate hormones.

With all that Alex has going on, it scares the crap out of me that he has been put on such a powerful drug as Trilostane without a confirmed diagnosis of Cushing's. My Squirt's story should show you that even with all the tests showing positive, they can still be inaccurate, if something else is going on in the body. Drugs such as phenobaritol would certainly fit in this category as does hypothyroidism, diabetes, liver or kidney disease, or a host of other things.

Cushing's is a slowly progressing condition which means you can take the time to make absolutely sure that he does in fact have Cushing's before putting him on any of the treatments for it. If Alex were my baby, I would stop the Trilo, start hunting for a second opinion, and have him thoroughly tested to rule out all other possibilities.

We are on yours and Alex's side, Cindy, and all we want is for Alex to get the treatment he needs... but we want it to be the right treatment for the right condition. No, we are not vets, but we do live with Cushing's and a myriad of other canine diseases/conditions on a daily basis. Our experience is first hand - not only from text books and what others tell us. We have seen some real horror stories and when red flags start waving in our faces, we have to speak up and share what we know.

Whatever you decide, we will stand by you and help in any way we can. You and Alex are family now and we protect our family rather fiercely. ;)

Hugs,
Leslie and the gang

[Cindy Thoman]

Thanks everyone for the input, I so appreciate it more than you know. I am writing everything down and plan on talking to the vet in the next couple of days.
At this point I am thinking about stopping the medication, asking for an ultrasound, having an ACTH done in 30 days. I will also ask the vet where the closest specialist is for a consult.
Any other input would be so appreciated. Do yesterday's results of 2.5 and 7.4 really mean anything without the prior ACTH test? Would 30 days be long enough to wait once stopping the Trilostane to do the ACTH?
xoxo
Cindy and Alex

[labblab]

Cindy, obviously I am biased from what I have written earlier, but I think it's a great idea to spend the next couple of days reading and compiling your questions, and then approaching your vet about additional testing. As for yesterday's ACTH results -- the good news is that, thus far, Alex's cortisol level has not dropped too low on the trilostane. That is what you would be most immediately concerned about, even if it turns out that he is a Cushupup. However, since no prior ACTH was performed, what you don't know is how far Alex's cortisol has dropped on this specific dose (in addition to the uncertainty about the diagnosis itself). In treating Cushing's, that would make it somewhat more difficult to anticipate the need for dosing adjustments in the near future.

Without a confirmed diagnosis, I am concerned that there so many variables at play. Regardless of whether or not you see improvement in any symptoms while taking the trilo, in the absence of a confirmed diagnosis it is hard to judge whether the results are due to dosing issues or totally unrelated variables. So for that reason, too, I think that pursuit of a diagnosis prior to treatment is a really good thing. Also, you've asked about trilostane treatment for alopecia. I'm really hoping that Glynda will be able to stop back by, because she is very knowedgeable about Poms and coat issues!

Marianne

[lulusmom]

Alex did not have an ACTH or prior low dose test. He is aware that the phenobarb can also cause the same signs as Cushing's. He said his gut is telling him it is Cushing's. He said because Alex is tolerating the medication he would like me to stick with him on this for another 30 days. I am to call him at the first sign of any problems. At this point he feels the Trilostane is not hurting him and does not want to stop prior to the 30 days. If need be after the 30 days he said we can stop the medication and then do a ACTH test after 30 days.

Does this sound like a reasonable plan?

If, in fact, your vet confirmed a diagnosis based solely on a high dose dex test, I would suggest to you that your vet has very little to no experience in diagnosing and treating a dog with cushing's. Knowing what I know today, if a vet told me he was going to prescribe a serious drug like Vetoryl based on a gut feeling and an inappropriate test, I'd tell him he needs to either take some continuing education courses and learn how to follow proper protocol or refer my dog to a specialist. I am beyond flabbergasted that your vet would actually confirm a diagnosis on a gut feeling.

With the exception of Alex's loss of coat, phenobarbitol can cause all of the symptoms you are seeing as well as the blood abnormalities. I believe you even mentioned that the symptoms didn't appear until after you started the phenobarbitol. Don't you think that is rather telling? My question for your vet would be; "Why is your gut telling you that cushing's is a more likely suspect than the phenobarbitol?"

Now having said all that, because you are fairly new to the frustrations and confusion of cushing's, we all need to give your vet the benefit of the doubt. I know that when my first dog was diagnosed my head was swimming and everything the vet was telling me was Greek. I saw his mouth moving but it wasn't English coming out of it and even if I knew what the words meant, I'm not sure how it would have applied to my dog. What I really needed was a valium. :p

So let's start over and get all of our ducks in a row so that we can actually give you some more really helpful information. It would help alot if you repost just the abnormal blood values to include the normal reference ranges. Take a look at all of your paperwork and make sure that the results you posted were the high dose and confirm with the vet that he has not done any of the following:

1. Urine cortisol creatine ratio
2. ACTH Stimulation Test
3. Low Dose Dex Suppression Test (LDDS)

If he has done any of these, please get copies and post the results here.

Now let's talk about Pomeranians and the way they freak us out when they start losing their coat. I mean after all, it's that gorgeous coat that reels us in. Consider yourself lucky that Alex still has some hair on his torso. By the way, he is as cute as a bug. My Lulu has a sprig that sprouts here and there which I try to keep trimmed up. Otherwise, she looks like a hyena with a bad coat so what does that tell you? She lost her hair years ago and no matter what we've done, she's not regrown it. Now it's actually moving up the back of her head and she has become a partial chrome dome. :D I used to fret about it but not anymore because I know it's strictly cosmetic and that's what sweaters are for.

Poms are a nordic breed and nordic breeds are genetically predisposed to alopecia X. Most of these dogs don't have typical cushing's but it is thought that they have a 21 hydroxylase deficiency. This deficiency inhibits the synthesis of cortisol and the cortisol precursors accumulate. These cortisol precursors are what we know as intermediate or adrenal sex hormones, most notably 17oh progesterone. If any of these other intermediate hormones are elevated and the cortisol is normal, that's called atypical cushing's. I know this is all Greek to you but this is well published stuff and any vet who knows the breed, knows about their predisposition to hormonal imbalances. There are plenty of bald poms out there and I've actually met more than a few at Petco and Petsmart while doing adoption clinics. It seems my Lulu is the oddity because most baldies are males. Being a chatter box about all things adrenal, I had to quiz them about their dogs and I don't remember any having cushing's symptoms.

There have been more than a few studies on alopecia x in pomeranians and most have some elevated intermediate hormones but they are clinically normal, meaning they are just bald (usually with black skin) with no other symptoms.

There is only one test that can be done to determine if elevated intermediate hormones are causing Alex's problem. Your vet should request a full adrenal panel from the University of Tennessee Knoxville. They test all adrenal hormones as well as cortisol so you'll kill two birds with one stone. If your vet is unfamiliar with this test, he can contact UTK and they will inform him how to do the blood draw and how to ship. It's not a cheap test but if you have a balding Pomeranian, it's the test to do. My Lulu's internal medicine specialist did every test in the book and the UTK panel was done before he would prescribe treatment. She had the typical pituitary dependent cushing's with elevation of most of the adrenal hormones. Here's a handy link to UTK so be sure to share it with your vet.

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

There is also a condition called castration responsive alopecia that can effect any breed. Some male dogs simply produce too much testosterone and it causes their hair to fall out. I have a little Maltese who was dumped at a shelter because he was bald and his owners didn't want to deal it with financially or any other way. We had him neutered and his coat immediately grew back. Is Alex neutered?

Well Cindy, I've written a novel and it's all your fault for being a fellow Pomeranian lover. I could talk for days about Pomeranians and if you add cushing's to that, you've got Glynda with diarrhea of the mouth. Sorry. :o

[Cindy Thoman]

Glynda, thanks for the information. I think I am ready to start taking some of Alex's xanax!!
When I talked to the vet last night he did say that he did not do an ACTH or LDDS. In looking through the paperwork I do not see results for Urine cortisol creatine ratio.
Abnormal blood-work:
ALK. PHOSPHATASE- 2267 10-150 U/L reference range
GGT - 15 0-14
RBC - 9.77 5.5-8.5MILLION/uL
HGB - 22.6 12 - 18 g/dL
HCT - 63.2 37-55%
EOSINOPHIL - 0 2-10%
ABSOLUTE EOSINOPHIL 0 100-1250 /uL

Alex had a high dose test to start with:
7.1
0.7
<0.5
Recent ACTH:
2.5
7.4

The more input I get I am feeling like Alex does not have Cushing's.
Based on how long he has had the hair loss and how it is progressing it does sound like alopecia X. Alex had his anal glands removed 4 years ago and that is when we first noticed the hair never grew back where they shaved him.
The increased appetite sounds like a side effect of the phenobarb. He does not have increased thirst but perhaps some increase in urination. He has always urinated frequently but I do think more so lately. No panting or back end problems.

The vet is off tomorrow but I am going to stop the medication and call him Thursday.

xoxo
Cindy and Alex

[jmac]

Hi Cindy-
I just wanted to mention one more thing. My parents' collie was on phenobarbital and she definitely had an increased appetite. I remember that one time she ate almost a whole loaf of bread before getting caught. Her appetite was out of control. I think you're making a good decision to stop the medication. Also, I can't remember if it is a link on this site, or on the other group I am a member of, but there is a website where you can search for internal medicine vets in your area. That might be of some help to you. I will see if I can figure out where I found it.

Good luck to you and Alex!
Julie

[labblab]

Here's that link about searching for internal medicine specialists:

http://www.k9cushings.com/forum/showthread.php?t=182

Julie, thanks so much for reminding us to add the link!

Marianne

[Cindy Thoman]

Thanks again everyone. I stopped the medication this morning and will have more testing done. My husband checked out the link for an IMS and it looks like the closest might be in Albany, NY which is about 90 minutes from us. I am going to ask my vet for an ultrasound and to do the ACTH in 30 days. If either of those are positive I will ask for a referral. Alex has significant issues with going in the car, it can bring on a seizure and GI issues.

Glynda, if Alex does have the alopicia x would that affect results of the ACTH? Would it be a true negative result? I think I understand you to say that if it is positive for Cushing's it might not be typical.

Alex has been neutered.

xoxo
Cindy and Alex

[jmac]

One more thing, Cindy. My vet said he would refer me to a vet that was not even listed when I searched online. It is actually much closer than some on the list. You may want to ask your vet if he knows of any that are closer. My vet is having a specialist come in to do the ultrasound, so maybe that is an option as well (if your vet doesn't do them). My vet said it was important to get someone good who specializes in ultrasounds to come in, rather than him trying to do it. Finally, have you ever tried Comfort Zone D.A.P. spray that you can buy at pet stores? My Hannah tends to get pretty nervous (although not as bad as Alex) going to the vet, groomer, etc. so I spray that on a bandanna and put it on right before we go. It doesn't last a long time, but it does seem to really calm her for 30-60 min. It might be something you could try.

Julie

[labblab]

There is only one test that can be done to determine if elevated intermediate hormones are causing Alex's problem. Your vet should request a full adrenal panel from the University of Tennessee Knoxville. They test all adrenal hormones as well as cortisol so you'll kill two birds with one stone. If your vet is unfamiliar with this test, he can contact UTK and they will inform him how to do the blood draw and how to ship. It's not a cheap test but if you have a balding Pomeranian, it's the test to do. My Lulu's internal medicine specialist did every test in the book and the UTK panel was done before he would prescribe treatment. She had the typical pituitary dependent cushing's with elevation of most of the adrenal hormones. Here's a handy link to UTK so be sure to share it with your vet.

I'm certain that Glynda will be checking in again, but in the meantime, I just wanted to repeat her earlier testing recommendation. I totally agree with her (and Leslie earlier) that the full adrenal panel would be very helpful in Alex's case. If it turns out that Alex's cortisol level is elevated above the normal range, then he is considered to have true Cushing's (either pituitary or adrenal). It has been our experience that most dogs with elevated cortisol may also exhibit some elevations in other intermediate hormones, as well. But the primary treatment focus is upon decreasing the cortisol level (either using Lysodren or trilostane).

Some dogs, however, exhibit normal cortisol levels but elevations in intermediate hormones. These dogs are diagnosed with "Atypical Cushing's," and the treatment focus is upon lowering the intermediates instead of the cortisol. The University of Tennessee makes treatment suggestions based upon each dog's profile, but for Atypical Cushing's they usually recommend melatonin, lignans, and perhaps maintenance doses of Lysodren. I don't believe that UTK recommends trilostane for the treatment of Atypical Cushing's, because trilostane always results in the further elevation of some of those intermediate hormones.

However, just to muddy the waters, some researchers have found that trilostane does seem to help regrow fur in animals suffering from alopecia-x, which results from a specific type of intermediate hormone elevation. I don't think the mechanism for this somewhat paradoxical result is yet well understood. Glynda may have more information about this. But if it should turn out that Alex does suffer from either true Cushing's or alopecia-x, then trilostane may indeed be a treatment of choice for him. But even in that case, my own thinking is that you will be better served by waiting to treat him until you have found out what the confirmed diagnosis turns out to be.

So in terms of additional testing through your local vet, as Glynda has suggested, I would first ask him to prepare blood samples to be sent to Tennesse for the full ACTH panel testing. Depending upon those results, if an ultrasound still seems warranted, I would hold off on that until you've received the referral to the specialist. The adrenal glands are very hard to visualize properly, and you want to make sure that the ultrasound is performed using high resolution equipment and with experienced interpretation. Just my two cents worth for this morning!

Marianne

[Squirt's Mom]

Hi Cindy,

I think you are very wise to stop the Trilo and I applaud the courage I know it took to make that decision.

We live in a rural area and the closest IMS in an office is about an hour away, more if traffic gets snarled up. That is also the closest 24 hr ER. But there is an IMS who travels to the smaller vet clinics. For emergency situations this is not helpful but for testing that needs to be done that isn't urgent, it is viable. He has kind of a mini-lab with portable equipment where he can do more in depth tests that a GP clinic is usually set up to do. You might ask your vet if such a service is available in your area which would make it much easier on Alex if he doesn't have to travel as far.

If you have to travel to see an IMS, then you might consider making it an overnite trip, unless staying in strange places also puts Alex at risk for seizures/GI problems. If he visits ok, then having a length of time between the ride and the actual vet visit might be beneficial. I would also call ahead and talk to them about Alex's reaction to travel and the vet to see if they have any suggestions to make it easier on him. The less stressed he can be, the better all the way around. Bless his heart.

Keep up the good work! You, and hubby, are doing great! :)

Hugs,
Leslie and the gang

[labblab]

Cindy, I just wanted to add that in the event that you do opt to have the ACTH full adrenal panel performed at Univ. of Tennesse, I agree that it is a good idea for the month-long lapse in the trilostane beforehand. This is so that you can get a true picture as to Alex's natural baseline hormonal levels. Since trilostane is known to elevate several of the intermediate hormones, the testing is muddied if is conducted while trilostane is active in the body. But a month-long hiatus should be enough time for Alex to return to baseline status for the testing.

Marianne

[frijole]

Cindy, I live in Nebraska and there is not one single IMS in our entire state which I found quite shocking.... so I had to drive 5 hours each way for help... but it saved my girls life when misdiagnosed with cushing's. I know it is tough but you can have them help/guide your vet. Hang in there. xoxo Kim

[Cindy Thoman]

I just heard back from the vet's office and we are going to wait 30 days and then do the full adrenal panel performed at UTK. I called the university and they said the cost of the test is $150, not as much as I thought it would have been.
After I get those results then I will decide on the next step.
Thanks again everybody for the input.

XOXO
Cindy and Alex

[labblab]

Cindy, don't be dismayed to find out that your total cost for the testing will be more than that. The $150 is what UTK charges for their analysis of the blood samples. But your vet will undoubtedly need to also charge for administering the ACTH stim agent, drawing the blood samples, and sending them to Tennessee. However, in Alex's case, I do think that it will be money well spent.

Marianne

[Cindy Thoman]

Thanks Marianne, I forgot about that. You are right, it is so worth it. I was feeling a little overwhelmed with all this Cushing's stuff but feel like we will be off to a better start with the full panel.

XOXO
Cindy and Alex

[labblab]

Hi Cindy,

I'm just wondering how you and Alex are doing during his trilostane "break"? I hope that all is well!

During this interim, one other suggestion has also occured to me. And that is to provide you with the contact information for the technical representatives of Dechra (manufacturers of brandname Vetoryl) in their U.S. office in Kansas:

http://www.dechra-us.com/Default.aspx?ID=365

In the past, I have had the chance to personally speak with Dr. Allen, a vet who serves as a technical rep. And he has been both very helpful and also very nice! I am thinking that Dr. Allen may be able to tell you whether there is any interaction between phenobarb and trilostane, and also whether the phenobarb would have any effect at all on the extended panel testing. In this way, you would be prepared with advance treatment information in the event that Alex does indeed test "positive" for Cushing's or alopecia-x. For instance, if you do end up choosing to treat with trilostane, Dechra may recommend that you switch Alex to one of the bromides for treatment of his seizures.

This is just a thought. But as I say, I have found Dr. Allen to be very helpful regarding a whole range of trilostane-related questions.

Marianne

[Cindy Thoman]

Marianne, thanks for checking on us. Alex is doing good. There was no change in him before, during or after the 12 days on the Trilo. He has been better this past 7 months then the prior 1 1/2 years. When we started him on the phenobarb and switched him to Hills WD he improved within 24 hours. He has only had 2 very mild seizure's and his stomach issues are 95% better. We were dealing with constant throwing up, loose stools with blood and mucus.
Thanks for the information, I will call them.

xoxo
Cindy and Alex

[addy]

Thought I would stop in to say hi. Thank you for sharing about my story thread.

Just my thoughts on supplements, I took Zoe off most of hers in hopes nothing would skew her tests, especially her UTK adrenal panel.
With Alex waiting for his UTK panel to be done, I personally would not add anything at this point. You have plenty of time later. :)

Hope you have a good weekend and give that darling little pom hugs from me. He is so darn cute!!!!!!!

Hugs,
Addy

[Cindy Thoman]

Marianne, just wanted to let you know that I did call Dechra and the University of Tennessee. They were both very nice and helpful. The phenobarb will not effect the UTK panel and if need be Alex can stay on the phenobarb while taking the trilostane. I will be calling the vet next week to schedule the test.
The Dr. I spoke with at Dechra reiterated what most of you have said about how difficult it is to diagnose Cushings. With Alex having a seizure history and the thyroid problem that makes it more difficult. He did note that there is no problem with holding off treating to see if more symptoms develop. So, one step at a time starting with the UTK panel.
xoxo,
Cindy and Alex

[addy]

Hi Cindy,

You do have time if Alex's symptoms are not strong. Cush savy vets won't treat without strong symptoms.

Zoe has been on melatonin and lignans since last July, she also has colitis and we have been waiting to treat as her symptoms were mostly, hair/coat and back leg weakness. When we redid the UTK panel this past January her estradiol came back normal and most of her other hormones decreased. Her cortisol rose, however, she had been having a colitis flare up for 2 months prior, so not sure if some of that could have caused an increase. She was pretty sick in November and December 2010. The weird thing was, her blood work all came back normal in January. Zoe just turned nine (we think) It has been one year since we first heard the possibilty she may have Cushings. She was diagnosed by IMS in June 2010. I think I am seeing her symptoms increase, she seems to be looking for food everywhere.

Dr. Allen from Dechra told me I would start seeing whatever symptoms she currently had worsen and she may develop new symptoms as the disease progressed.

Hang in there.

Hugs,
Addy

[Cindy Thoman]

Just thought I would give you guys a quick update on Alex. My vet spoke with Dr. Oliver at UTK and he advised that Alex have the Adrenal Panel, combined Dex Supp/ACTH Stim. I hope that is the right test, I will let you know results as soon as we get them.
I took Alex to the vet today at 9, 1, and 2.

xoxo,
Cindy and Alex

[addy]

Hi Cindy,

I am so glad you updated:) I have been wondering about little Alex. How great your vet let you go back and forth to his office for the test.

Less stress for Alex.

Let us know when you get the results.

Hugs,
Addy

[littleone1]

Hi Cindy,

I hope all is well with Alex's test results.

[labblab]

Hi Cindy,

I believe this is the most complete diagnostic panel that is available. Like everybody else, I'm anxiously awaiting the results!!

Big hugs to both you and Alex,
Marianne

[MBK]

Hi, Cindy -

That is wonderful that you were able to go back for each part of the testing. I would have loved to have been able to do that. My IMS didn't offer that option, plus I was charged an additional $38 that day for hospitalization/day care! Now that I know there's no medical reason not to do this, next time I will ask!

I hope Alex gets encouraging results!!!

[addy]

Hi Cindy,

Checking in to see if you got your tests results back. I know sometimes Unn. Tenn. tests take some time but every once in a while they surprise you!!!!!:)

Hugs,
Addy

[Cindy Thoman]

Hi Addy,

I have not heard anything yet. I called my vet Friday and he did not get back to me. I am calling again Monday.
Alex is doing good. He loves being able to sit outside now that the weather is slowly getting better here.
Thanks for checking in, I will definitely let you all know as soon as I hear something. I have to say it has been nice to be off the roller coaster ride for awhile.
xoxo
Cindy and Alex

[Cindy Thoman]

I have the test results back from UTK. I will do my best to post.
Test Result Normal Dex. ACTH Normal
baseline Range Supp. Stim Range for ACTH


Cortisol ng/ml 49.4 2.0-56.5 7.0 99.7 70.6-151.2
Androstenedione 1.09* 0.05-0.36 0.23 3.10* 0.24-2.90
Estradiol pg/ml 42.7 23.1-65.1 47.0 47.0 23.3-69.4
progesterone ng/ml 0.21* 0.03-0.17 0.04 1.07 0.22-1.45
17 OH progesterone 0.30* 0.08-0.22 0.10 2.35 0.25-2.63
Aldosterone pg/ml 54.6 11-139.9 49.9 234.1 72.9-398.5

Test results: indicate presence of increased adrenal activity. (marginal)

Comments: Typically several steroids are significantly elevated in both columns, not in this case. Deviations from reference ranges are marginal, except baseline androstenedione is moderate. Dexamethasone suppressed cortisol (to<10 ng/ml) and other steroids indicating a normal negative feedback with the pituitary. Estradiol is independent from either dexa or ACTH. Some vets consider Melatonin and Lignan, combined, if symptomatic.

Not sure what all this means. Is this considered atypical cushings?
My vet suggested starting the Melatonin 3 mg given q12 hrs.
He was not familiar with Lignan, told him I would look into that. Due to Alex's history of a very sensitive stomach I was thinking HMR but I don't know anything about it. We are also starting him on 1/2 the Melatonin for one week as in the past I tried him on the controlled release Melatonin 2mg and he got diarrhea.
Any feedback is greatly appreciated.

xoxo
Cindy and Alex

[Cindy Thoman]

Sorry, when I posted it came out a little different. The column's across the top should be as follows:

Test
Result baseline
Normal Range
Dex. Suppression
ACTH Stim Result
Normal Range for ACTH Stim

Cindy

[addy]

I will let the others comment on the test results. I do not want to misspeak.

As far as melatonin, you can't use extended release melatonin. You have to buy plain melatonin. You can get it at Walgreens. I started with 1mg tablets and worked my way up to 3 mgs. Then switched to 3mg tablets.

SDG Lignans have fiber and can cause some pups loose stools from too much fiber. If the fiber bothers the pup you can switch to the HMR lignans. Zoe was on two capsules of Vita Cost SDG and the fiber bothered her. I switched to Heartland powder SDG lignans. She only takes 1/8 teaspoon of it so she's been okay with that.

UTK has a paper on their website explaining the lignans. I can look for the link for you.

Alex's cortisol is normal. That is a good thing.:D

Love,
Addy

[lulusmom]

Hi Cindy,

Wow, most of us should be so lucky to see such stellar UTK panel results. Awesome! For me, the negative low dose and the negligible post stim elevations in only one intermediate hormone is enough evidence to rule out typical and atypical cushing's. I firmly believe that the phenobarbital is the culprit for the blood abnormalities and the symptoms.. As for the loss of coat, I think I may have mentioned early on in your thread that I've seen plenty of naked Poms who are perfectly normal otherwise. It certainly won't hurt to try melatonin but it doesn't work a good percentage of the time and when it does, it takes a while so be patient. If you are like the rest of us you have more time than money anyway. :D:p:D

So the good news is that Alex's his adrenal and pituitary glands seem to be pretty normal and talking to each other they way they should. If Alex is still symptomatic, you may want to talk to your vet about switching him to potassium bromide. If it were me, I'd probably try to make the switch anyway, simply because phenobarbital is so tough on the liver.

As for the loss of coat, it's a tough pill for us Pom owners to swallow. I remember how beautiful and lush Lulu's coat was early on but it's been so dang long since she's been bald, I can't imagine her any other way. :D I decided a while back to take the advice Dr. David Bruyette gives to his petowners with naked Pom's and resign myself to the fact that Lulu's nakedness is strictly cosmetic and buy more sweaters. :D

Glynda

[Cindy Thoman]

Addy and Glynda, thanks for the feedback. Glynda, do you see any reason to try the Lignans or can I just try the Melatonin?

xoxo
Cindy and Alex

[Cindy Thoman]

I just spoke with Dr. Oliver regarding Alex's test results and he said he thinks that Alex has a mild case of Atypical Cushing's. He does not think I need to put Alex on the Lignans. He recommends the Melatonin Implants as he thinks that works better for the hair loss.
I am going to make sure Alex can tolerate the Melatonin pills before talking to the vet about the implants. I do realize his hair might not grow back and I'm fine with that.
I want to thank everyone for all the feedback on Alex. If I had not found this forum Alex would still be misdiagnosed with Typical Cushings and on Trilostane which he never needed to be on. Thank you all so much, you are just the best!!

xoxo,
Cindy and Alex

[addy]

Oh Cindy, I am so happy things turned out the way they did for you and Alex.

I use Nature's Bounty melatonin, plain old meltatonin and I buy it at Walgreens. It comes in 1mg and 3mg tablets. Try 1mg at a time 1 time a day for a few days, then 1 mg at night too for a few days and work your way up.

That is what I did for Zoe who has super sensitive digestive system :)
It took us a month to get to 3mgs 2 times a day but hey, slow is best!!!

Love,
Addy

[Squirt's Mom]

Hi Cindy,

Like Glynda said, I would be so happy with those results! :)

The combination of lignans and melatonin is used to lower estradiol when it is produced outside the adrenals as Lysodren cannot reach those areas. Since Alex's estradiol is normal, the lignans wouldn't be needed.

Squirt has been on melatonin for 2 1/2 years. Her coat has become quite a bit thicker over that length of time. Folks who haven't seen her since we moved away from here usually ask if that is the "original" Squirt because of her coat! :) One downside I have noticed is that her nails grow very quickly, very long and are very thick....she has nails more like a much larger dog and I feel that is due to the melatonin. So it can help regrow hair. I will say, tho, that I have trouble sleeping quite often and take melatonin to help.....and my hair is falling out at an alarming rate! :eek::p I've thought about taking the dose that Squirt does but I would be a zombie if I did! ;)

I am happy for you with these results! :) I hope all that you have been seeing is due to the phenobarb and you can find another approach that works for Alex.

Hugs,
Leslie and the gang

[lulusmom]

Hi Cindy,

I'm glad you got the answer you were looking for from Dr. Oliver. I didn't mention lignans because I didn't think they were necessary, although human studies have shown lignan to help with hair loss. Like Leslie, I am losing hair at an alarming rate so maybe I should think about melatonin and lignans. Sweaters don't really do anything for bald women. :D

[labblab]

Hi Cindy,

I just wanted to add my well wishes to you and Alex. I am so glad that the U. of Tenn. testing results have shed more light on Alex's situation!! You have done a great job of educating yourself and advocating for Alex with each step that you have taken on his behalf. Good work, mom!! :)

I just wanted to add that my girl who also started on phenobarb a couple of months ago is now doing MUCH better as far as side effects. She does still drink a bit more than previously, but the unsteadiness and lethargy have improved dramatically (and she has ALWAYS been hungry, so I don't think that will ever go away!). Most importantly, she has not had a seizure since starting the phenobarb and her liver studies have not shown any effect or elevation. So we are hugely grateful for that. I'm hoping that any phenobarb-related side effects will ultimately quiet down for Alex, too.

Anyway, continuing best wishes to you both. And please keep us updated as to how he responds to the melatonin.

Marianne

[Cindy Thoman]

Hi everyone, just thought I would give you a quick update on Alex. He has been on the Melatonin for three months. I don't really see any changes but things are not getting worse. He still begs for food all the time but I know that is a side effect of the phenobarb. His hair has not grown back but he has not lost anymore. I am really ok with the no hair, he wears a bandanna and looks cute. I will have his liver enzymes checked in a couple months and put him on supplements for that if I need to. I really just want to give him a nice break from the vets and testing. He seems happy and content most of the time. His anxiety issues have decreased somewhat. His stomach has been good on the Hills WD. I tried to get him off that and he became sick after 4 days so for now I am going to keep him on it. He still takes his thyroid meds. He has about one mild seizure every couple months, so not making any med changes for that at this point.
We have added to the family. We now have two 13 week old ragdoll kittens.
Thanks again for all your help, I will continue to check in.
xoxo
Cindy, Alex, Bear, Milo and Otis

[addy]

Hi Cindy,

It is great to hear from you and to hear about Alex. It sounds like he is doing well. You get used to the bad coat and suddenly, it is not so important because they are still beautiful. :):)

Rag doll kittens? Now Cindy, you have to post pictures. What does Alex think of them? What are their names? How cute is that!!!!!!!!

We need to see a family photo!!!!!!!!!

Hugs and love,
Addy

[jmac]

Hello!

Glad to hear Alex is doing well and feeling good! That's what matters!

Julie & Hannah