*New member* Dirk & Rebecca

[rtopicz]

Hi my name is Rebecca and my dog Dirk was diagnosed with cushings on 1/13/11.

So here is the story.

First off I have worked as a Veterinary Assistant for 4 years and found out about cushings about 3 years ago when a patient at the hospital was diagnosed with it. So about 2 years ago I noticed that Dirk was overheating easily, had a potbelly, poor coat (not hair loss, just coarse and dull coat). I did not however notice the excessive drinking due to the fact that I have a 2 year old diabetic lab mix, Clark. We go outside for potties all the time. Or the excessive appetite, again because of Clark all of my dogs are fed a measured amount twice a day. I had mentioned all of this to his doctor at the time and we did a water consumption test that came back normal (I think this is due to the fact that he had to stay at the hospital in a cage for the test). So we went no further with testing. Since that time the urinating in the house has just gotten worse. From 1-2 times a week to every day, sometimes twice a day. I really thought this was behavioral due to the fact that it only happens when I'm not home. Turned out it's cushings. I finally got to my breaking point and took him into work. His doctor suggested an ACTH. That cam back positive on 1/13/11. On 1/14/11 his blood pressure came back normal, and on 1/19/11 his High Dose Dex test came back positive for pituitary dependent cushings.

So I have decided to treat with Trilostane. I just keep questioning myself. I chose Trilostane over Lysodren because I have watched a dog die from a Lysodren overdose. I also picked Trilostane because a client donated her leftovers after her pet could not take it anymore. I have like 9 months of it, free, how can you say no. And I also don't want to give Trilostane because this is only the second dog my doctor has treated with it (the first had a very strange and undocumented reaction to it). However he is very much into learning new things and researched it a lot.

I would also like to know if anyone has looked into surgery on the pituitary gland. I have read a lot about it but can't seem to find anyone who does it in Florida. I understand that it may not be the best option for my dog or any other dog, but it's an option and I am one of those that must research all my options before coming to an answer I'm happy with. I just can not wrap my head around the fact that what I am going to do is kill the adrenals when the pituitary is the problem. I think this is the only disease I have come across in career that does not actually treat the "real" problem. That is extremely aggravating to me.

So I just want some real world expert advice on whether I'm doing the right thing or not.

On to the blood work results. I printed out all of his bloodwork from 2008 on so if you don't see something you think I should have let me know, I probably have it. This is in most current order.

1/18/11 High Dose Dex test:
Pre sample: 5.7ug/dl with a range of 1-6ug/dl this is normal.
4hr post sample: 0.6 ug/dl
8hr post sample: 0.3 ug/dl
Results: PDH

1/12/11 ACTH test:
Pre-ACTH level: 3.7 ug/dl
Post-ACTH level: 31 ug/dl
Results: Positive for Cushings.

11/30/10 biopsy of enlarged right popliteal lymph node.
Results: came back as normal lymph node inflammation.

9/1/10 Chemisty, CBC, & T4 for dental cleaning.

CBC results:
High HCT 56.2% (normal is 37-55)
High HGB 19.4 ug/dl (normal is 12-18)
all else WNL.

Chemistry results:
High ALKP 241 U/L (normal is 10-150)
High TRIG 167 mg/dl (normal is 20-150)
High BICARB 26 mEq/L (normal is 17-24)
Low AMYL 430 U/L (normal is 450-1240)
all else WNL.

T4: Normal at 1.3

3/1/10 Chemistry, CBC, T4 and urine (I think this was done for an overheating episode)

CBC:
High HCT 56.7%
High HGB 19.7
all else WNL.

Chemistry:
High ALKP 197 U/L
High LIPA 990 U/L (normal is 100-750)
High TRIG 358 mg/dl
High BICARB 25mEq/dl
High B/C ratio 38.3
all else WNL.

T4: normal at 1.3 ug/dl

Urine:
High RBC due to catheter with trace amounts of protein (<100mg/dl)

I'm going to stop there. If you want further back just let me know. The last test we are waiting on is the current Chemistry, CBC, T4 and urine. The Trilostane is compounded and siting in refrigerator ready to start. I just hope I'm doing all the right things.

Thank you in advance for your time and comments, sorry it was so long winded.
-Rebecca

[lulusmom]

Hi Rebecca and welcome to you and Dirk.

I don't have much brain power left or the day so I'm not going to rake you over the coals with the usual ton of questions. Besides, you've done a great job of presenting Dirk's case to us. I'm sure I won't cover everything in my comments in blue below but I'll make up for it tomorrow.




So I have decided to treat with Trilostane. I just keep questioning myself. I chose Trilostane over Lysodren because I have watched a dog die from a Lysodren overdose.

Dogs very, very rarely die from a Lysodren overdose so I have to believe somebody screwed up big time. If the dog's death was, in fact, attributed to an overdose (total adrenal necrosis, one or all of three things happened. The vet failed to follow proper protocol and/or give detailed instructions to the pet owner as to how to monitor the dog once loading is initiated and/or the pet owner simply failed to monitor the dog properly.

I have two cushdogs and they've treated with both Lysodren and Trilostane and they are itty bitty guys, 4.5 lbs and 6.5 lbs and loaded at maximum recommended dose of 50mg/kg and are both on a maintenance dose even greater than that. There is no need to fear either drug, especially if you educate yourself on whatever pill you are putting into Dirk's mouth. A lot of us have found out that our gp vet, whom we adored, was woefully ill equipt to diagnose or treat a dog with cushing's.

I also picked Trilostane because a client donated her leftovers after her pet could not take it anymore. I have like 9 months of it, free, how can you say no. And I also don't want to give Trilostane because this is only the second dog my doctor has treated with it (the first had a very strange and undocumented reaction to it). However he is very much into learning new things and researched it a lot.

It is great that your vet is into learning and researching thing because Trilostane is a very serious drug and we know from experience that while it is tauted for having less side effects than Lysodren, it has it's fair number of issues, including complete adrenal necrosis resulting in death. With trilostane you want to start low and go slow. Can you tell us how much Dirk weighs and what dose you will be starting him on?

Your vet needs to read the Dechra brochure and follow proper protocol for dosing and for monitoring treatment. I am actually hoping that Marianne, one of our administrators will drop by and provide you with more detailed information than I can provide. She has been in contact with a vet on staff at Dechra a number of times. You can find a lot of great information on both Vetoryl (Trilostane) and Lysodren in our Helpful Resources section. For your ready reference, I am including a link below to info on Vetoryl, including the Dechra brochure and UC Davis dosing protocol based on their own experience. This is all very good information that you can share with your vet.

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

I would also like to know if anyone has looked into surgery on the pituitary gland. I have read a lot about it but can't seem to find anyone who does it in Florida. I understand that it may not be the best option for my dog or any other dog, but it's an option and I am one of those that must research all my options before coming to an answer I'm happy with. I just can not wrap my head around the fact that what I am going to do is kill the adrenals when the pituitary is the problem. I think this is the only disease I have come across in career that does not actually treat the "real" problem. That is extremely aggravating to me.

The surgery you are referring to is called a transsphenoidal hypophysectomy and unfortunately, I don't think it is a procedure that is currently performed by surgeons in the U.S. We are hoping, however, that this will change soon. I'm running out of time here but I can provide more information tomorrow regarding clinical trials at UCLA wherein human surgeons are teaching veterinarians how to do the surgery. We have a member whose dog was involved in this study and has done beautifully.

So I just want some real world expert advice on whether I'm doing the right thing or not.

On to the blood work results. I printed out all of his bloodwork from 2008 on so if you don't see something you think I should have let me know, I probably have it. This is in most current order.

1/18/11 High Dose Dex test:
Pre sample: 5.7ug/dl with a range of 1-6ug/dl this is normal.
4hr post sample: 0.6 ug/dl
8hr post sample: 0.3 ug/dl
Results: PDH

These results are absolutely NEGATIVE FOR CUSHING'S. Lab instructions as to how to interpret an LDDS is not always easy to read but these results are clearly not PDH.

1/12/11 ACTH test:
Pre-ACTH level: 3.7 ug/dl
Post-ACTH level: 31 ug/dl
Results: Positive for Cushings.

These results are positive for cushing's; however, since the LDDS is negative for cushing's, an abdominal ultrasound should be done to take a look at the adrenals and surrounding organs. If Dirk does, in fact, have cushing's, the abdominal ultrasound will also tell your vet whether he has pituitary or adrenal cushing's.


11/30/10 biopsy of enlarged right popliteal lymph node.
Results: came back as normal lymph node inflammation.

9/1/10 Chemisty, CBC, & T4 for dental cleaning.

CBC results:
High HCT 56.2% (normal is 37-55)
High HGB 19.4 ug/dl (normal is 12-18)
all else WNL.

Chemistry results:
High ALKP 241 U/L (normal is 10-150)
High TRIG 167 mg/dl (normal is 20-150)
High BICARB 26 mEq/L (normal is 17-24)
Low AMYL 430 U/L (normal is 450-1240)
all else WNL.

T4: Normal at 1.3

3/1/10 Chemistry, CBC, T4 and urine (I think this was done for an overheating episode)

CBC:
High HCT 56.7%
High HGB 19.7
all else WNL.

Chemistry:
High ALKP 197 U/L
High LIPA 990 U/L (normal is 100-750)
High TRIG 358 mg/dl
High BICARB 25mEq/dl
High B/C ratio 38.3
all else WNL.

T4: normal at 1.3 ug/dl

Urine:
High RBC due to catheter with trace amounts of protein (<100mg/dl)

I'm going to stop there. If you want further back just let me know. The last test we are waiting on is the current Chemistry, CBC, T4 and urine. The Trilostane is compounded and siting in refrigerator ready to start. I just hope I'm doing all the right things.

You did a beautiful job of posting test results. Is the trilostane liquid? Just wondering because compounded capsules do not need to be refrigerated. With conflicting results between the LDDS and the ACTH, I would be very hesitant to begin treatment before validating the ACTH stim test with an ab ultrasound or an endogenous acth.

Thank you in advance for your time and comments, sorry it was so long winded.

We love a lot of detail so don't ever apologize for being long winded. I am the queen of long winded so there. :D
-Rebecca

[rtopicz]

Hi Lulusmom, thanks so much for the prompt and late evening post.

You are very right about the "Lysodren overdose" as I put it. The dog did not die from Lysodren. The dog died from euthanasia due to severe and sudden onset liver disease. This dog was also on medication for seizures and (it's been a couple of years please bear with me) some other medications that can all cause liver disease. The reason I chose Trilostane over Lysodren was mostly because of this experience. This was one of my first with cushings and it was very traumatic to me due to the fact that I was very close to this dog. It was not a mistake or unintentional mega dose of lysodren. This was a controlled effort on a controversial method of turning a cushing dog to a (some think) more controllable Addison dog. I can honestly say it was probably not due to the Lysodren and I am sorry for that above statement. This whole idea of mine that Lysodren is more dangerous or is not right for my dog stems from this event and raw emotion I still feel from it. This was my doctors dog and I took care of her at the hospital for months. I was very close to her and for a long time really felt that something was not done right. Looking back I know we did everything for her and she was very sick in the end. Their was nothing I could have done to save her and I, finally, believe that.

Moving on Dirk is 10 years old and weighs 7.75lbs. The Trilostane I compounded myself at the hospital (I have the compound in the the refrigerator because the manufacturer of the compounding solution and flavor says to keep it in there) it's a 10mg/ml suspension and his starting dose is 0.7cc SID so he will be getting 7mg once a day. I have red a few post and notice that several pets are on BID dosing. I have spoke with my doctor about this and after several conversations with specialist he decided SID dosing would be best to start with.

As for the Dex test. The results I posted were for a High Dose Dexamethasone test, not the Low Dose test.

I will re post the results from 1/18/11 exactly as written on the lab work.

Dirks results:

PRE-DEX 5.7 ug/dl
4 hour POST-DEX 0.6 ug/dl
8 hour POST-DEX 0.3 ud/dl

Interpretation for a High Dose Dexamethasone test:
(their are a couple I will post them all)

If the 4 hour is
<1.5 or <50% of baseline
&
the 8 hour is
>1.5 and >50% of baseline
this is consistent with PDH
_______________________

If the 4 hour is
>1.5 and >50% of baseline
&
the 8 hour is
<1.5 or <50% of baseline
this is consistent with PDH
_______________________

If the 4 hour is
<1.5 or <50% of baseline
&
the 8 hour is
<1.5 or <50% of baseline
this is consistent with PDH
(this is Dirk)
________________________

If the 4 hour is
>1.5 and >50% of baseline
&
the 8 hour is
>1.5 and >50% of baseline
further testing is required to differentiate PDH from adrenal tumor.

Thanks so much, hope this helps and sorry for the early insight on how my mind works.

[lulusmom]

Hi Rebecca. Have to run to get ready for work but wanted to thank you for your response and apologize for missing the "High" Dose Dex. I told you my brain power was greatly diminished last night. :D

Dosing looks really good and I am really happy to see that your vet is discussing Dirk's case with specialists. Will check back in later.

Glynda

[zoesmom]

Hi my name is Rebecca and my dog Dirk was diagnosed with cushings on 1/13/11.

I just can not wrap my head around the fact that what I am going to do is kill the adrenals when the pituitary is the problem. I think this is the only disease I have come across in career that does not actually treat the "real" problem. That is extremely aggravating to me.

-Rebecca

Hi Rebecca - You've done a good job of taking the lead with Dirk's cushings. Just have a couple of comments. Trilostane does not kill the adrenals like lysodren. The two drugs work in different ways. Trilostane blocks the pathway of cortisol's affect between the pituitary and the adrenals. Don't ask me how - way above my head. Lysodren, on the other hand, does work by eroding the adrenals. Used properly, however, it is a good drug for treating cushings. Trilostane is as well, but again, it must be used correctly with proper dosing and monitoring. Your vet's inexperience with trilostane is not necessarily a deal-breaker. Just means that you AND he need to educate yourselves to the hilt about how it should be used. When my Zoe was first dx'd, she was my vet's first patient to use trilostane. I read all I could about it and she was very open to learning all about it too. I would print out info and take it to her. Zoe was treated for 4 years with trilostane, so it's do-able, especially with a vet who is willing to learn and willing to consult with a colleague who knows more about it, when in doubt.

The other thing is the options for treating PDH. Surgery for PDH is rare in this country and a drastic approach, so therefore, it is usually treated with medicine. However, there is another option and that is radiation tx. Thing is, it's only done at a few vet schools, I believe. And normally, it is only done on dogs whose pituitary tumors are macrotumors. That is usually determined by an mri. We have had a few dogs here go thru radiation. There's no guarantee that it will provide long-lasting relief either. Could help for as little as a few months or as long as a couple of years. But they say that dogs don't have as the same bad reactions to radiation as humans. I think it can have a negative effect on things like their hearing, though. And it requires leaving the dog for a couple of weeks or longer (not sure) so they can be treated several times a week. So If Dirk does not have a macrotumor, trilostane or lysodren is probably the best approach.

An abdominal ultrasound is always a good idea - shows what else might be going on inside - connected to the cushings and otherwise. But since you did the HDDS, too, you can probably be comfortable with the PDH diagnosis.
Sue

[Squirt's Mom]

Hi Rebecca and welcome to you and Dirk! :)

You have done a great job of setting Dirk's story out for us! Way to go! That means we can forego our important game of 20 Questions and get right on to being nosy! :p

I wanted to share my Squirt's story with you because an ultrasound saved her life. She had blood work for a dental that came back indicating we needed to test for Cushing's - which we did thoroughly. (I'm a tad anal about my baby. :rolleyes: ) She was diagnosed with PDH via the LDDS, HDDS, ACTH, UTK panel and 2 abdominal ultrasounds - ALL positive for PDH. On the second U/S a tumor was found on her spleen. Once the tumor and part of her spleen were removed, in Sept. of '08, her cortisol returned to normal and has stayed that way.

I like to share her story so folks know just how important an ultrasound can be beyond the diagnostic value in Cushing's.

Keep up the good work!
Hugs,
Leslie and the girls - always

[rtopicz]

And here I was all ready for the 20 questions.

Well we started the Trilostane on Friday and he seems to be doing great. The only SE seems to dry mouth. His blood work came back in on Friday morning and looks good.

Leslie, thank you for your story. The doctor said that we didn't have to go for the ultrasound because the test results came back PDH. However because of your story I think I'm going to push for it. I'm friends with the doctor that does the ultrasound and he normally does a professional "freebie", and that would be nice. I will let you all know when and what the results are.

The only concern I'm having right now is that since Saturday Dirk has had a painful spot on his left side just under his ribs. This makes me think poss. a painful kidney? Can't say for sure. He will be going in to work with me tomorrow. Maybe the doctor can tell what it is, or I guess it will be more blood work and ultrasound.

1/20/11 CBC, Chemistry, T4 & urine.
(not fasted for blood sample)

Chemistry results:
High Alk. Phos 345 (normal 10-150)
High CK 733 (normal 10-200)
High Lipase 941 (normal 100-750)
High Potassium 5.8 (normal 4-5.6)
High triglyceride 574 (normal 20-150)
Low NA/K ratio 25 (normal 27-40)

CBC, T4 & urine all WNL.

I'll update tomorrow night, thanks ladies!

-Rebecca

[rtopicz]

Well the ultrasound is scheduled for Friday night. We will let you know if it shows anything.

-Rebecca & Dirk

[frijole]

Good luck! I think you will be glad you did - even if just for peace of mind. It gives a vet a real good feel for what is going on with the organs. Kim

[jrepac]

If you can afford to do it, the ultrasound is a good thing. At least you can make sure other "stuff" isn't going on with your pup's organs..


Jeff & Angel Mandy

[Squirt's Mom]

Good for you, Rebecca! Let us know what you learn, ok?

Hugs,
Leslie and the girls - always