Jesse just diagnosed with Cushings

[Roxee'sDad]

Re: Jesse just diagnosed with Cushings

Hi Patti,
The little faces are off to the right side of the area that you type your new post in. As you write a new post..... look directly to the right and you will see an area with the faces and titled smiles. put the cursor where you want the face and click on the smile of your choice.
Good Vet
Bad Vet
Jesse pooped on the floor
All the Best.
John (Roxee's Dad)

[ventilate]

Re: Jesse just diagnosed with Cushings

not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)

I am SOOOOO glad this was not my vet, my dog has lived 3 years on this ODD drug, ohhhh vets like that just fly all over me..... Maybe he should learn how to use the protocols properly, the way he told you to pick which ever dosage you want tells me he doesnt have a clue and obviously does not gobby the tried and proven protocols.
was going to bed as I have to be up at 0445 tomorrow to work but had to write as I would not be able to sleep with out sending my 2 cents in.

After this so called cushigs expert, i do understand your frustration in trying to find someone you trust to treat your dog. I can only wish you the best of luck and if you were closer to me I could help you out but Asheville is a long ways away but come on down and I'll hook you up

Night folks
Sharon
now I can sleep

[Roxee'sDad]

Re: Jesse just diagnosed with Cushings

Hi Patti,
Good to see you have so much support here. Keep strong and don't be afraid to question your vet. I have, and have switched to a vet that had experience with cushings. Even with his experience, I still put him to the test and not afraid to question his recommendations. He was put off at first, even reminded me he went to school for this stuff. Anyway, we get along just fine... he even knows he has to fax me all Roxee's test results before he even calls me to discuss. Turned out to be a pretty good guy. I was able to do this with the support of this group/forum and reading all the links provided to me by this group. It is unfortunate that cc.net is gone, otherwise you would be able to read so many, many success stories.

My point is....... you are writing the check and you have a right to question or even interview other vets to check on their experience. The finality of it all is that you are the boss and make the final decision. Don't be intimidated. Be strong for your Jesse.

Keep up the questions and good work. Your doing good. You have alot of good, caring, and knowledgeable people on your side.

Hoping and praying for the best for you and Jesse.
John (Roxee's Dad)

[frijole]

Re: Jesse just diagnosed with Cushings

Patti it is very normal to get confused at the beginning because there are so many tests and so many numbers. You'll be a pro by next week.

Re the first 8 hr test that was done - can you please read on the report and confirm that the name of it the Low Dose Dexamethasone Suppression test? I want to be sure. The results of 7.4,8.6,8.8 do not fall on a diagnosis for Pituitary cushings. I want to be sure we are talking the same test since there is also a HIGH dose dex test. FYI the LDDS test is considered to be the most reliable test for differentiating between pituitary and adrenal cushings.

The 2nd test that you had done was the ACTH and that measure cortisol. The first number you can ignore. The 2nd number of 26.7 is "not high for a dog with cushings". A normal dog has a level of 22 or less. The poster on the other thread that said that number was very high hadn't read your thread and was assuming you had already started treating and so she was comparing that number to the desired level of 1 to 5.

Regardless of which drug is chosen the goal is to lower the 26.7 number to a lower range (normally between 1 and 5) So after treating you do ongoing ACTH tests to confirm your dog is maintaining the lower level. I hope this explains all the numbers...

I agree with Glynda - you need someone that knows what they are doing and can help you should you need help. Saying all dogs die is ludicrous and unacceptable. A good vet is more important that your choice between lysodren and trilostane.

The drugs work differently but have been equally effective from what we have seen. I am repeating what Glynda said a few posts ago because I want to make sure it is clear:

I think there is pretty good evidence that Jesse has cushing's and that cortisol is elevated which would explain all the symptoms you mention above. However, any one of the other adrenal steroids and hormones can cause those symptoms too, especially if estradiol is elevated. Whether one or more of the other adrenal steroids and hormones are also elevated can only be determined by having a full adrenal panel done by the University of Tennessee.

Trilostane does a beautiful job of reducing cortisol but it always increases one or more of the other adrenal hormones. If a dog already has elevated hormones, you can rest assured that you'll probably see symptoms return at some point down the road as Trilostane will exacerbate the condition. I am a firm believer that, without exception, this panel should be done before starting Trilostane. Lysodren, on the other hand, does a great job of controlling all of the adrenal steroids and hormones so I wouldn't necessarily pay for this test if I chose to treat with Lysodren.

We have been able to watch dogs take both lysodren and trilostane over the years. Trilo was very very new when I came onto the board 3 yrs ago. What scares me about it is exactly what Glynda said above. We are just now seeing cases where dogs that were having success with trilo are having to go off of it and onto lysodren.

Yes the way lysodren works seems scary but it is truly a miracle drug and it has given my dog 3 additional yrs (and counting). Loading can be stressful but that is where knowledge on your part and also the vet comes in. You simply monitor and when in doubt you stop giving the drug and do another ACTH test to see where the cortisol level is. Better safe than sorry.

Sorry this is so long but I wanted to get back to you and also to make sure you understood what Glynda was pointing out. Thanks!

Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Oh Glynda,

Somehow you actually manage to make me laugh.
No, no stroking out, who would yell at the vets??
Thanks for the link, I'm going to check right now.
You are the best Glynda,
Thank you for the support Karen and Joe
Kim - I wouldn't be here without you.
Thank you everyone !!!!!!!!!!!!!!!!!!!!!!!!!
Alot of my panic is in having clowns for vets, and I have called everyone around and asked the" questions" they all have the same stupid answers.

Patti and handsome Jesse
I haven't figured out how to put those little faces in - or I would.

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi again.

Jesse's pre cortisol draw 5.9 which is within the normal range. His post
cortisol draw was 26.7 is high which is consistent with cushing's. We've seen dogs as high as 50 so don't go stroking out on us.

If you can't get to Dr. Peterson, I highly recommend that you see if you can find another internal medicine specialist closer to home. Here is a link that can help you find one near you. I saw that there are more than a few listed in CT so I hope one is closer to you. Call and interview them. Ask how many cushdogs they treat, both past and present, what treatment they prefer, etc. There is no doubt in my mind that you know what questions to ask.

http://www.acvim.org/websites/acvim/index.php?p=3

Glynda

P.S. You are posting in the right place

[Kwiggles]

Re: Jesse just diagnosed with Cushings

Hello Patti,

I just wanted to say hi and offer a little moral support here for the decision-making process you are going through. A few weeks ago, I was right where you are and I know how confusing it can all be when you are trying to make the best decision for your pup.

My dog Joe had very similar numbers on his bloodwork as your Jesse but we could not get a good look at both his adrenals at ultrasound, so his diagnosis (adrenal or pituitary) is still up in the air. My vet suggested we go ahead with Lysodren loading as this would help relieve his symptoms while we are still trying to get a good visualization of his adrenals.

As someone who has just recently used Lysodren for the first time, I totally understand your trepidation in using it but I am here to say it can be used safely and effectively.

But I also want to say that before starting Lysodren therapy (or any other Cushings drug) you really need to get your dog under the care of a vet who is competent and knowledgeable and willing to make himself/herself available to you for consultation when you need them. Of course, I don't personally know any of the vets you have dealt with, but I think that to go off on vacation for a week without giving you any warning is unprofessional and rude (and just plain wrong!)

When I was preparing to start Joe on his Lysodren loading, my vet provided me with a 4 page detailed protocol with specific dosing instructions, a supply of Prednisone and clear instructions on signs of over-loading to look for, as well as his home phone number in case I had an after-hours question or emergency. I was in touch with him by phone and email throughout the process. And despite my anxiety, Joe came through it just fine. Ideally, I think that's the kind of care you are looking for and I would encourage you to hold off on starting meds until you can find a vet who is really going to be there for you and Jesse.

Lysodren is undeniably a powerful drug but used carefully it can do so much for the quality of life for our pups. Joe just completed Lysodren loading 6 days ago and started his maintenance dose yesterday and already his water consumption is down by about 1/3. His appetite is coming down to something near normal (no longer ravenous all the time) and he seems to just be feeling more comfortable in general. And we are hoping for things to just keep getting better and better

Regarding the toxicity of Lysodren, my vet said he has never had a dog under his care die due to Lysodren treatment and in fact, has never had a serious (i.e., life-threatening) case of overloading. The key is in experience, knowledge and paying close attention.

Patti, I would echo what many others here have said- hold off any treatment until you find a vet to work with with whom you feel comfortable, also keep coming back to this board- there are so many caring and knowledgeable people here who will support you and help guide you toward the right treatment for Jesse. Hang in there, it really does get better!

Hugs and good wishes from Karen & Joe

[barney's mom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

I think cushing's savvy vets should grow on trees right next to the money tree that cush parents need to get their babies correctly diagnosed.



Glynda

Wow! Well said! That should be my sig

[barney's mom]

Re: Jesse just diagnosed with Cushings

Hi Patti,
wow what a vet!!!!! Pretty much giving you the okay to use whatever dosage you want

As you know there are plenty of Lyso and Trilo success stories here

John (Roxee's Dad)

OMGosh! I can't believe he said that! That was really irresponsible of him. I definitely wouldn't want him to treat my dog! As John said, there are lots of success stories here with dogs treated with either drug.

If you are in tune with your dog, and you know what to look for, and are paying attention to how your dog eats, drinks and behaves, either drug can be given safely.

Cheryl

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Glynda, Should the lower number be from 1 to 5 ??
When it gets normalized??
Jesses is 26.7
Holy cow - is that really high??
Wait, I think I read someone said they've seen the numbers higher.
Oh - sorry I'm confusing myself now.(probably everyone else for that matter.)
Glynda, Petersons office is in Manhattan - right smack in the city!
It would be - maybe 3 hours with the traffic - and the weather is getting really hot - unfortunately, just too much for Jesse I 'm afraid.
But - Boy - do I hear ya.

(I'm not sure I'm posting in the right places)
Should all my questions be posted on Patrica Ann White site??

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Glynda,

Oh Thank You for getting back, Can you believe these guys??

Yes, I will have to wait for Peterson, it would have been nice if he could have talked to me too, in fact when I called he picked up the phone and asked my name, I recognized his voice from a much earlier (quicky) conversation. When I said my name he quickly handed the phone to his secretary.
I called back at 4:30 - he had just left for the weekend, to return - I believe she said Tuesday.

So - the numbers sound like pituitary. Both ultrasound people supposedly are very good, they've been around a long time. Both agreed on the adrenals.

It seems like lysodern does have more severe side effects ( if used improperly) and with the scary scary stories these vets have with lysodern - can you see why I'm leaning towards trilostane.

The more I've been reading - low dose seems the way to start out.
Patti and Jesse

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Your the third person to say it may not be pituitary, if its not - then what?
These things always happen on the weekend it seems.
The ultrasound s don't come up with other organ problems, liver, kidney great, so they say, could it be something totally different, even with the potbelly, thirst, hunger, panting.??

If it's an adrenal tumor, surgery could be a permanent cure if Jesse were a good candidate for surgery. If surgery isn't an option, then Lysodren would be the appropriate treatment for an adrenal tumor.

Most often, dogs with cushing's have some type of liver abnormality. Are you sure the ultrasound showed a perfectly normal liver? I think there is pretty good evidence that Jesse has cushing's and that cortisol is elevated which would explain all the symptoms you mention above. However, any one of the other adrenal steroids and hormones can cause those symptoms too, especially if estradiol is elevated. Whether one or more of the other adrenal steroids and hormones are also elevated can only be determined by having a full adrenal panel done by the University of Tennessee.

Trilostane does a beautiful job of reducing cortisol but it always increases one or more of the other adrenal hormones. If a dog already has elevated hormones, you can rest assured that you'll probably see symptoms return at some point down the road as Trilostane will exacerbate the condition. I am a firm believer that, without exception, this panel should be done before starting Trilostane. Lysodren, on the other hand, does a great job of controlling all of the adrenal steroids and hormones so I wouldn't necessarily pay for this test if I chose to treat with Lysodren.

Glynda

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

I think cushing's savvy vets should grow on trees right next to the money tree that cush parents need to get their babies correctly diagnosed.

I picked this up yesterday at the office of my new vet that flew the coop till next Thursday

Corisol Pre 5.9
Cortisol 2 26.7

These numbers are definately consistent with cushing's. Some other vet up there told me that the adrenals were both very slightly enlarged but that was indicitive of pituitary.

You mentioned is another post that somebody said both adrenals were enlarged. Bilateral enlargement of the adrenals is common in PDH; however, there have been cases of adrenal tumors in both adrenal glands. I am assuming that the ultrasounds were done on a high quality, high resolution machine and that the findings were interpreted by an experienced radiologist? Did you get copies of the findings so you can post them here or did your vet(s) pass on the information? In your position, I would be very interested in the ultrasound as the LDDS results you posted are more inidicative of an adrenal tumor.

Peterson's secretary said that Peterson did look at Jesse's test but would call the first vet (that also flew the coop for a week without telling me)on Monday or Tuesday.

By the way, I wish you could have all been there - the stand in vet told me to go ahead with trilostane - not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)
I could start with 120 a day if I wanted - I mentiond davis' protocol and he said well - if I want - start at 60 a day, or 30 a day, he said to go with whatever I felt more comfortable with - he would leave 30's 60's and 120's all at the desk - take whatever you want he said.

Oh my gosh, this vet is unbelievable! Did you know that the actual percentage of dog whose death is attributable to Lysdoren is minute...something like 1%? Let me just say that there is no way on earth that I would let this vet touch one of my cushdogs.

Are you beginning to see why I called Peterson, not that he is panning out either now.

It sounds like Dr. Peterson is the only medical professional involved in Jesse's case that knows anything about cushing's and the appropriate treatment for your boy. I would certainly not start treating with Trilostane until you or your scarey vet gets direction from him. I so wish you could travel the 2 1/2 hours to meet face to face with him. You may want to reconsider doing just that. I pack a lunch when I take my two to the IM because the specialty hospital is far away and it's usually a several hour appointment. Just like you, I learned that not too many gp vets have the experience necessary to diagnose and treat a cushdog; however, I've never run into any that were quite as scarey as the ones you've had. It's worth the time and travel to me to make sure my dogs are in the best hands possible.

The vet thats returning from his vacation on Monday has never treated a dog with trilostane and he also has lost 3 dogs to lysodern.
Can you see where my fear comes from now.

Absolutely and I would also fear for any cushdog that might walk through his door.

Remember, this all started (or didn't start) with the expert specialist endo. in west hartford that told me to NOT treat cushings!! the drugs would kill him before the disease he said, reading the forum (whherever that went) is the only thing that kept me searching, and watching my dog - lets just say getting sadder. God - I LOVE MY JESSE BOY.

I really hope that you hold off on treatment until you can talk to Dr. Peterson. Sorry for forgetting to send that bio that I ran across. Better late than never ya know.

http://www.hypurrcat.com/bio2.html

Glynda

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Your the third person to say it may not be pituitary, if its not - then what?
These things always happen on the weekend it seems.
The ultrasound s don't come up with other organ problems, liver, kidney great, so they say, could it be something totally different, even with the potbelly, thirst, hunger, panting.??

[frijole]

Re: Jesse just diagnosed with Cushings

Patti - I do not have my LDDS chart "handy" right now but those numbers do not look indicative of pituitary to me. Unfortunatley I am heading out to an appointment but I will return later to check to see if anyone else has had time to look at those numbers and comment.

Cushings is sometimes difficult to diagnose and frankly thats why the forum was created to begin with... so you aren't alone. I would personally not give a drug yet.

I promise I'll check back in later today! Sorry I have to run.

Hugs
Kim