Alivia was recently diagnosed with Cushing's - Alivia has passed

[littleone1]

Hi Mary Beth,

I was paying $250.00 for Corky's stim tests, but the last two he had were higher. The cost of the Cortrosyn and lab fees went up. I am now paying $315.00

Terri

[MBK]

So far I am still the highest! But, that's definitely not a good thing!!! It might be interesting to start a thread with just what people are paying for the ACTH tests and where they are from.

[StarDeb55]

Mary Beth, I'm going to give you a link to Dr. Peterson's blog. He is one of the foremost endocrine experts in the country. Your IMS may be using what they need from a whole vial of cortrosyn when doing Ali's stim, & tossing the rest. He has instructions on how to make up the whole vial then separate it into smaller doses, freezing what is not used at the time. The frozen cortrosyn can be used for up to 6 months. This can cut the cost of a stim considerably as the drug is the most expensive part of the test. When you pull up the blog, go to the links on the right side of the page, click on the one for Cushing's, go to the post for 3/22/11. If you have trouble finding it let me know. I will tell you that when my Harley was first diagnosed, & my former IMS did his stims, she was charging in the $400 range.

http://endocrinevet.blogspot.com/

Debbie

PS- We already have an on-going poll about what people are paying for various tests. If you will go to the sub-forum below the main Cushing's forum, there are a number of different polls listed pricing on various tests. They are usually listed by country.

[MBK]

Thanks, Debbie. I will check out the link, but according to my invoice I only paid $88 for the Cortrosyn and $322 for the test itself!

Thanks for the info on the poll threads. I voted, but it doesn't seem like a lot of people have participated in it. I am still definitely on the high end for all testing!

[addy]

Hi,

Was that just for the stim or for the UTK panel? I don't remember exactly what I paid for Zoe's UTK panel but I think it was pretty close to the numbers you listed drug plus the test.

Hugs,
Addy

[MBK]

Hi, Addy -

This is all new to me so I am not quite up to speed on all the lingo. No idea what a "UTK panel" is! The invoice lists: "Adrenal Function Testing - Tennessee $322" and "Cortrosyn Inj per .2 ml. $88" for a grand total of $410. Obviously this is the test that went to Dr. Oliver and included a check on Cortisol and 5 other hormones. Is there something less that can be done in between to check on whether treatments are working?

At the moment, I am still leaning towards watching and waiting a bit before beginning any treatments (other than the natural supplements), as Alivia's symptoms do not seem nearly as severe as many I've read here. In fact, they seem to be lessening. In the past she has been totally symptom free for long periods of time, so I am hoping that occurs again.

Thanks for your concern,

Mary Beth and Alivia

[addy]

Sorry, I get so used to calling it UTK University Tennessee Knoxville=UTK panel

Then that is about what I paid- I believe that full adrenal panel is more money than just an ACTH test which does not check all the other hormones, only the cortisol.

Once you start treatment- I am not sure how often they run the full adrenal panel verses just a stim to check cortisol. I am hoping that the full panel will not need to be done every test but maybe others can chime on on that.

I believe there is also a test to just do a post stim not a a pre measure of the cortisol but it would probably depend on the vet and where you are in the treatment phase.

We will all be eating popcorn for dinner soon

Hugs,
addy

[Harley PoMMom]

Hi, Addy -

This is all new to me so I am not quite up to speed on all the lingo. No idea what a "UTK panel" is! The invoice lists: "Adrenal Function Testing - Tennessee $322" and "Cortrosyn Inj per .2 ml. $88" for a grand total of $410. Obviously this is the test that went to Dr. Oliver and included a check on Cortisol and 5 other hormones. Is there something less that can be done in between to check on whether treatments are working?

Mary Beth and Alivia

I can now see why you paid more, the UTK (University of Tennessee) Adrenal Function test that gets sent to Dr. Oliver's lab is quite more expensive than just a regular ACTH stimulation test.

The "regular" ACTH stimulation test is used sometimes to help diagnose Cushing's and used primarily to monitor treatment with Lysodren and Trilostane.

[MBK]

So, Alivia has had a UTK panel! Who knew?! Glad to hear that when (if) I begin treatment there are less expensive tests available for monitoring!

Pocorn for dinner? I may have to see if I can find a generic brand of popcorn at the rate of Alivia's medical bills! Oh, well. Thank goodness her vets all accept plastic!

Thanks to both of you for clearing up one thing I was confused about....now for the 3,000+ other things!

Happy remainder of the weekend!

Mary Beth and Alivia

[MBK]

HELP!!!!
As much as I was hoping they would, this time Alivia's symptoms are not going away. She is having rear leg weakness. I have steps for her to get on my bed and this morning she sat at the bottom of them staring up for several minutes. Eventually she made it up them, but it was like she knew she had to work up the strength. Her appetite is increased. Her water consumption seems to be a bit increased, but not as much as it has been (maybe this has something to do with the humidity being so high, as it has rained here almost every day for the past 6 weeks!). Her fur is hardly growing at all. Her leg was shaved 2 1/2 months ago for an IV and it is still bare. She has also has a pot belly, which is now also bare from having the ultrasound. She seems restless sometimes, like she can't get comfortable. I think I have to face the fact that it is time to start treatment.

Initially her regular vet thought Trilostane would be easiest on her (Alivia has an adrenal tumor but is not a good surgical candidate). I was concerned because of the potential of Trilostane elevating the other hormones and also the risk of it enlarging the adrenal glands. Dr. Oliver, via e-mail, suggested the possibility of using a maintennace dose of Lysodren, without loading, lignans and melotonin. I asked if he could direct me to any studies where this was proven to be successful. He said there have not been any, but he has seen test results improve, using this treatment. I wasn't comfortable with this.

I came across this quote from Dr. Mark E. Peterson:

“In dogs with Cushing's disease, you must use a daily loading protocol in order to adequately destroy enough of the hyperplasic adrenal cortex. It's quite unlikely that starting with a weekly maintenance dosage of mitotane would do much at all to lower the high serum cortisol concentrations in your dog.

But you don't necessarily have to use the standard loading dose for mitotane of 50 mg/kg per day. You could try a lower daily dosage of 20-25 mg/kg (with food) to evaluate the effect. “

I just got off the phone with Ali's vet. Between his research and mine, we agreed that this "Low dose mitotane loading" sounded like a reasonable treatment compromise (I REALLY hope so). Alivia weighs 18 pounds and he is going to start her on 200 mg per day. Has ANYONE had any experience with this?

I'm just plain terrified of starting ANY treatment.