"Simon's Grey Zone" 12y/o, JRT - Simon has passed

[apollo6]

dear Simon's mother.
according to all findings it is PHD, both adrenal glands are similarly enlarged. The new IMO i am going to wants me to start Trilostane.
I insisted on a small dose, 10mg versus 30mg. Apollo normally weighs 9.8 to 10lbs. but has gained weight now is 10.6lbs. I am very strict about his weight because being a dachshund he has back problems.

I should be getting the Triolstane in a few days. Secretly I want it lost in the mail. That is how scared I am of starting him on it. Keep wishing maybe diagnosis is a mistake.
Imo says I don't need to do THE FULL ADRENAL/HOROME test at this time, (can do latter once cushing is under control?)because of tests I already did.
List of tests done:
Sept 16, 2009-blood panel
January 2010-ultrasound-abdominal (disc)
May 25, 2010-blood panel
May 28, 2010- (Pet Emergency & Specialty Center-La Mesa)
ACTH Stim Test
Blood pressure
Urinalysis-Antech
Urine Culture MIC
Ultra sound, Focal Abdomen (only gall balder- sludge )did not get any report?
Says I need to trust him, see last few posts on my thread.
God Bless

[SavingSimon]

Back to the numbers, I will try to tell more numbers and less story, since my posts tend to get lengthy. On March 2, 2010 Simon had a CBC in which his Neutorphil SEG was 80 (slightly high) and Lymphocytes were 10 (slightly low). Those were the only flags on his blood work and the vet did not feel they were significant enough to mention. I do not know what those results mean. He also had a Urinalysis in which the gravity was 1.042, and not dilute, so I was told it was normal, though looking at the results I see something else the vet did not mention, and that is a flag by BILIRUBIN that says 1+/Negative/HIGH and in the section where it says BLOOD it says TRACE/NEGATIVE and is flagged H and PROTEIN TRACE (<100mg/dL) and after that it says "NEGATIVE TRACE" I am not sure if that means there was a trace of blood in his urine or not, but they did think since it was dense, he did not have the drinking and frequent urination that so often goes with Cushings. (I told them that he didn't). I was told all of those results were "normal". March 3, 2010 another ultrasound. I am sure every dog has different size organs, so rather than give you the measurements from this ultrasound, I will give you the summary "The liver is diffusely hyerechoic and contains multiple hypoechoic nodules of varying size the largest of which is 1.61 cm. None of the nodules disrupt the normal hepatic borders. Mildly enlarged adrednal glands [my note here, the rt is 7.7 mm and left is larger - 8.8 mm]." and then "Ultrasound Assessment: the diffuse hyperechoic liver could be consistent with a steroid hepatotopathy. The hypoechoic nodules likely represent benign nodular hyperplasia.l The mildly enlarged adrenal glands could be normal for dog, hyperplastic secondary to stress from underlying disease process, or consistent with pituitary-dependent hyperadernocorticism"
Those tests were done by another highly recommended internist and confused me more. I think I was frustrated to the point of tears when the vet said "I could send his bloodwork in to the University of TN for you. I am not really convinced your dog has Cushings, but it's another tool we can use to find out." So, okay March 26, 2010 the lab results from Jack W. Oliver, DVM, Ph.D. are in - and I do have contact information here if anyone wants it, although I was told not to use it by my vet, so I'm not sure if I should give it out - any input from Lori on that would be appreciated.
The way this lines up is:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5

I was going to try to color code the above so it is easier to see Simon's results and I was going to put in red the ones above normal, however that is really time consuming in this format, as is posting all of these test results in the first place. I hope that will be easy enough for everyone to read. It is important to note that because of these results, Dr. Oliver said I should NEVER use Trilostane to treat Simon. the reason, I believe is in the following quote from the "Treatment Option Considerations" sheet that accompanied the test results. "7) TRILOSTANE ... NOTE: Trilostane always increases 17-hydroxprogesterone (some cross-reactivity with pregnenolones in assays??). and frequently increases estradiol and androstenedione as well. Lysodern may be preferred for Atypical Cushing's cases." This is in bold and underlined, as well as a warning about switching from Trilostane to Lysodren, and how that should be carefully done. In these results there is also a website some may find helpful, www.vet.utk.edu/diagnostic/endocrinology.
Also, interesting I just noticed that there are "MELATONIN IMPLANTS" available for dogs and ferrets. www.melatek.net Thhe effects last from 3-4 months.
To answer Apollo6's Mom, there is further information on Dr. Oliver and his team at the UofTN at their website that I listed above. I do have Dr. Oliver's email, as well as phone, and direct contact information, if anyone wants it please send me a PM.
I am wondering here if this was a "complete adrenal panel" or not, because it says "Several patterns of hormone increase occur, so doing the comlete adrenal panel is advised" Actually, to answer my own question yes, six hormones tested are a full panel

I am currently waiting for the results from the second blood panel sent out to Dr. Oliver, the results should be in any day, and should be intesting since Simon has been on the flax hull lignans in between these two tests.

I am concerned about the trace of blood and the trace of protein that was found in Simons urinalysis, these things were not mentioned to me by Dr. Matz probably because I was so stressed I could tell he really didn't want to answer all of my questions. Not a vet with a good bedside manner.

I will now end this post because I just got off the phone with T.K. with very upsetting news. The test results are in. They change everything, so I will start a new post, with tears running down my face.

[apollo6]

I am praying for you.

[SavingSimon]

I just got the results back from Simon's second testing at the U of TN (in which almost every number went up significantly). Unfortunately, the name of his disease just changed from "atypical Cushings" to" full-blown Cushnoid" according to T.K.after speaking to Dr. Olvier. I am sick and heartbroken, and on top of that, I have an emergency at work. So I just wanted to finish that, I will post his second TN test results when I get back from work. The plan now is to start him on Ketoconazole. Immediately, as T.K. says we have slim choices. Trilostane not being an option means that a very corticaliac treatment is what is going to be the final option if the ketoconazole doesn't help. I still actually think he has "atypical" Cushings, I think it just became more real to T.K.. I can tell Simon hasn't been feeling as good. I am SO SCARED right now, you all, I'm petrified! I feel like I am losing Simon a whole lot faster than I thought it would be. I HATE CUSHINGS DISEASE!!
A quick question - a little out of the box - wondering if they have ever used the drug Lupron in treating atypical Cushings. What if he didn't have any hormones for the cortrisol to bind to? Would it be more destructive, or less? Lupron wipes out hormones. Lysodren destroys the adrenal cortex. I wonder if there is any research using a drug like lupron in dogs with Cushing's disease. I'll do more research on that when I get home. I had to be on Lupron for six months because of my hormones, it kind of makes sense to me, but maybe not because the cortisol would somehow be more destructive. Is cortisol considered a hormone, or is it a steroid? Or something else altogether? The weird thing is Simon's cortisol isn't all that high, but his other hormone numbers just took a huge leap up. I'll be back...
I am T.S. Dena (TERRIFIED SICK) and right now I hurt for all of us and these awful catch-22 type choices we have to make becauseof this @#$#@%$#% disease! Love and prayers for all,
T.S.Dena & Simon

[SavingSimon]

I am praying for you.

Thank you, I can tell. I can feel it, and you and Apollo are in my prayers too. You are a truly dear friend - faster than Cushing's! Everyone here helps me keep my sanity, God bless you all and your four legged shining stars of love! And may He help us all through this dreaded time in their lives and ours.

XOXO - gotta get running to work, I'll be back in a couple of hours if I can keep myself together. I'll bring Simon with me so I don't totally lose it and run off the road crying. Prayer helps a LOT! TY!!!! {{{{{{{{{{{{}}}}}}}}}}}}}

[SavingSimon]

dear simon's mother.
According to all findings it is phd, both adrenal glands are similarly enlarged. The new imo i am going to wants me to start trilostane.
I insisted on a small dose, 10mg versus 30mg. Apollo normally weighs 9.8 to 10lbs. But has gained weight now is 10.6lbs. I am very strict about his weight because being a dachshund he has back problems.

I should be getting the triolstane in a few days. Secretly i want it lost in the mail. That is how scared i am of starting him on it. Keep wishing maybe diagnosis is a mistake.
Imo says i don't need to do the full adrenal/horome test at this time, (can do latter once cushing is under control?)because of tests i already did.
List of tests done:
Sept 16, 2009-blood panel
january 2010-ultrasound-abdominal (disc)
may 25, 2010-blood panel
may 28, 2010- (pet emergency & specialty center-la mesa)
acth stim test
blood pressure
urinalysis-antech
urine culture mic
ultra sound, focal abdomen (only gall balder- sludge )did not get any report?
Says i need to trust him, see last few posts on my thread.
God bless

please wait if you haven't had the tests done by the u of tn - and when i get home trazee needs to talk to you - i will figure out how to get you two together!!! Trilostane is not as safe as they are telling you and if your baby is atypical it can kill!!!!!!!!!!!

[Harley PoMMom]

Hi Dena,

First, take some breaths and breathe...a little more relaxed? We do have another member here whose dog is taking ketoconazole, melatonin and the flax hulls and is doing well on this treatment plan.
Here is a link to their Thread and a particular post: Update on Zoe Claire "Atypical Cushing" http://www.k9cushings.com/forum/show...8&postcount=67
post: http://www.k9cushings.com/forum/showthread.php?t=620

When you get time, please do post Simon's UTK test results and the Dr. comments at the bottom of the page.

Now concerning contacting Dr. Oliver, I have emailed him many times and he usually always responded back very quickly and was always very courteous in his emails. On the forum here we do provide contact information for Dr. Oliver in one of our Threads: http://www.k9cushings.com/forum/showthread.php?t=1896

We are here for you, Dena, you are not alone, remember that.

Love and hugs,
Lori

[StarDeb55]

I just read on another thread that Dr. O is apparently on vacation until after the 4th of July, so responses may be delayed.

Debbie

[apollo6]

hang in there . This disease sucks. we have to be strong for our little ones.
prayers for you and Simon
Sonja and Apollo

[SavingSimon]

Back to the numbers
The way this lines up is:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
1. Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
2. Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
3. Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
4. Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
5. 17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
6. Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5

I was going to try to color code the above so it is easier to see Simon's results and I was going to put in red the ones above normal, however that is really time consuming in this format, as is posting all of these test results in the first place. I hope that will be easy enough for everyone to read. It is important to note that because of these results, Dr. Oliver said I should NEVER use Trilostane to treat Simon. the reason, I believe is in the following quote from the "Treatment Option Considerations" sheet that accompanied the test results. "7) TRILOSTANE ... NOTE: Trilostane always increases 17-hydroxprogesterone (some cross-reactivity with pregnenolones in assays??). and frequently increases estradiol and androstenedione as well. Lysodern may be preferred for Atypical Cushing's cases." This is in bold and underlined, as well as a warning about switching from Trilostane to Lysodren, and how that should be carefully done. In these results there is also a website some may find helpful, www.vet.utk.edu/diagnostic/endocrinology.


I am currently waiting for the results from the second blood panel sent out to Dr. Oliver, the results should be in any day, and should be intesting since Simon has been on the flax hull lignans in between these two tests.

I trimmed the quoted post a little so I can go ahead and post the verbal test results I received yesterday here, the normal range obviously remains the same. I wanted to put part 3 here for now, since I currently only have the results from the U of TN over the phone from Simon's vet, T.K., which I received yesterday. He started the conversation letting me know "this is not what we expected" I really had no expectations so I knew bad news was coming. Not only that, but he called when I was on the other line finding out about horrible lack of common sense mistakes being made at my business, so I told him "I need a second to get myself out of "rage" mode. He said," Yes, you do, I will wait ..." which made me also realize I was in for a blow. I have never switched emotional gears so quickly. Anyway, here are the results that are about three months later, after Simon has been faithfully taking the flaxhull lignans, melatonin, Sam-E, and milk thistle faithfully. He is also scheduled for his fourth ultra-sound tomorrow. I will post all results and progress as - and if I am able to, and fill in any blanks, as well as do my best to answer any questions anyone has.

Real quick, here is the first full adrenal panel again:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
1. Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
2. Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
3. Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
4. Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
5. 17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
6. Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5
------------------------------------------------------------------------
For the second panel, I will just post the base result followed by the post result in numerical order, as mentioned, the normal ranges above remain the same.

BASE/POST
1. 38.9/297.2
2. 1.76/>10 (in other words off the chart)
3.80.3/86.2
4.0.17/3.10
5.0.18/3.24
6. 370.8/672.1

T.K. asked Dr. Oliver if the results were higher almost across the board because Simon was tested too early. Dr. Oliver said no.

Again, this most certainly confirms that Trilostane is NOT an option for Simon at any time. This was re-emphasized by Dr. Oliver.

One unusual point of interest is that his cortisol stayed closest to the same in both tests.

So there we have where Simon is now. He is starting ketoconazole today, which I am familiar with as an "older" Valley Fever medication, so I have no worries other than how effective it will be at Cushings - it certainly cured all cases of Valley Fever except for one that was not caught in time. If the Ketoconozale is not effective, then we will start our last option, which is Lysodren, and T.K. explained it will be given to Simon only once a week or twice a week, and the trick will be finding the balance. He assures me he has thirty five years of experience with lysodren, and that it is very effective at reducing cortisol, but the price you pay is the cortilactic effect of it basically destroying the adrenal cortex. That makes me want to explore other options and research them thoroughly before we get there. I am still curious if any research has been done with the drug lupron on Cushing's dogs, if anyone knows of anything like that. Of course I will research it myself and post my findings but I just thought maybe someone reading has knowledge or experience of whether or not it has been tried in dogs with Cushing's - any links would be greatly appreciated.
Again, I thank you all for being such a supportive and caring group. I keep everyone here and their dogs in my prayers, please let me know if there is anything else I can do to help you, or support you. I am very good at research - it is what I ended up liking the most in college, and I am a good listener, prayer, and friend.
I apologize again, for any disagreements I may have caused, I only can say that I was being honest and felt obligated to share what I have been told. I am not here to stress any one out - I just care for you all and your dogs too, and hope I can be helpful and not divisive, that never was my intention. I want to be supportive and I want to share what I have learned on my journey with Simon so far in hopes of helping, never harming. I do sincerely apologize for any undue stress I caused, or any unnecessary concerns. I would never express anything controversial if I wasn't deeply concerned myself, I assure you all - I really need this forum, and Simon does too. Your support is, as others have said, PRICELESS.
Thank you all for your patience with me through this most difficult journey I have ever been on with any dog in my life. Having rescued several hundred Jack Russell terriers, and witnessed all sorts of human cruelty, I can honestly say that the stress of dealing with Cushing's has taken a greater toll on me than anything else I have ever been through. Probably because Simon is my most dear son and best friend in the world. I lost my human best friend last year to a slow and painful death, and facing losing Simon is something that I did not expect to have to do for at least four to six more years. I am not ready, not that I ever would be, but I really don't think I can handle this alone, and I am very grateful for you all and your empathy, understanding, compassion, and wisdom.
Love and prayers being sent out from us for all here,
Simon's Mom who hopes she is "SavingSimon"