Sleepless in Auburn

[Sage]

My Jack Russell/Fox Terrier (Sage) displayed a lot of the Cushing's symptoms and was tested every which way for months to try and land the diagnosis. Urine tests, blood tests, low and high dex, ultrasound, stim....on and on it went with mixed results. The symptoms were so strong...drinking, peeing, eating, weakness, and weight gain that I reluctantly agreed to petuitary Cushing's and we went for a Lysodren treatment plan.
She was 21 lbs back in January 2011 so she was to get 250mg in the morning and 125mg in the evening with food for the initial phase until the symptoms subsided and a test revealed "normal" levels in her blood. Thereafter, (on April 8, 2011) she recieved a maintenance dose only of 125mg twice a week. This went on for months with a few tests that revealed "normal" cortisol levels. The only problem was Sage was gone, she became weaker than she already was, lost most of her appetite, slept 20 hours a day and was just on another planet. She just leveled off in a poor state and was even losing ground. On Thanksgiving, 2011, I stopped the Lysodren.
Over four months now and though she is back to drinking lots of water and peeing her appetite is still very low and she has shown new symptoms such as circling, profound confusion, loss of vision, and arthritic behavior. I can't even afford what all this has already cost me and Sage is behaving like she had a stroke or some adverse permenant reaction to the medication
I won't go into details but our dogs are our children and you can all imagine the exhaustion and difficulty we are in the midst of. i have read myself into the ground on Cushing's. The tests are packed with uncontrollable variables, the medication is toxic, and money makes the world go around. I believe Sage has a macro tumor that is now affecting her brain function. And I don't see any reason to pay for MRI's just to know it's there...but remain untreatable.
Everyday I walk in the door I look to see if Sage is still with us. Just over a year ago she was hunting quail in Idaho and living a blessed life.

[Harley PoMMom]

Hi and welcome to you and Sage,

I am so sorry to hear that Sage is having these problems and can only image how worried you are about her. The love we have for our furbabies is deep and when they are not feeling well it truly breaks our hearts.

Some of the symptoms you described such as profound confusion and arthritic behavior could be attributed to Cognitive Dysfunction. How old is Sage?

Please know we are here to help in any way we can and we will walk this journey with you.

Love and hugs,
Lori

[TheTankster]

From reading your post, it was like I was reliving what I just went through over the past 13 months. The endless and expensive tests, the inconclusiveness of it all... the medication that's supposed to treat it but at the same time, often makes it worse... My Tank suffered from the Cushing's symptoms, the medications and it's side effects, the visits to the vets, while my husband and I rarely slept two hours straight for over a year taking care of him and trying to make our baby comfortable. Like you, I researched the hell out of Cushing's and other diseases that might be causing these symptoms, and like Sage, Tank started exhibiting neurological problems after we started treatment for the Cushing's (seems like he had a stroke as well for he'd forgotten his routine and way around the house). I wanted it to be something simple and curable like a tooth abscess that had caused a brain abscess and could be fixed with antibiotics... or I wanted Tank's blindness to be caused by hypertension that could be reversed and his sight restored... I too didn't feel it was necessary to get an MRI or CT (besides the cost, it wouldn't be treatable, so what's the point, right). But that is one thing I regret now. If I was certain that indeed it was a macroadenoma that was causing his neurological problems and that it was only going to get worse, then I wouldn't be so torn over my decision to have ended his life so soon. I stay up at night wondering if his eyesight would have been restored or his seizures would have stopped, those being caused by high blood pressure or low thyroid level. Myself and the vets "assumed" it was all from an enlarging tumor. But that is just how I feel and I am certainly not encouraging you to get anymore tests done if you feel you have exhausted all routes and effort, and it seems like you have and that you have done the best you can for your baby. Only you can determine if Sage has any quality of life left for her, or if she is simply just "existing" like my Tank was. It was the hardest, most excruciating decision I had to make, and I have cried everyday for 37 days, but I couldn't bear to make him go through anymore medications and seizures and tests. Unfortunately, I'm able to keep track of the number of days easily because it was March 1st when things started to go downhill. This is the first I've posted in someone else's post. I haven't been up to doing anything but creep around here and re-read the kind words that were left for Tank. But upon reading your story, I just wanted to say that you are not alone. When we say that we know how you feel and know what you're going through, it's so very true. Others on this forum will help you through this - they have been lifesaving angels, and their knowledge of veterinary medicine in general (not only of Cushing's) is far superior than most vets out there! I can do my best to help as well, since Sage is exhibiting all the neurological symptoms Tank had. You are not alone. My thoughts are with you and Sage.
Lisa

[labblab]

I, too, am so sorry to hear that Sage is doing do poorly. I'm guessing the suggestion of additional testing may make you cringe :o, but since discontinuing the Lysodren, has Sage had an ACTH test and bloodwork checking her electrolytes? Some of her problems could be linked with long-term Addisonian issues: low appetite, excessive thirst and urination, lethargy, and joint/muscle pain. It may be the case that the Lysodren suppressed her adrenal function in a manner that has resulted in persistant imbalances in her hormones and blood chemistry that can be relieved with medication. This wouldn't necessarily explain all the problems you're witnessing, but it could account for many of them...

Marianne

[marie adams]

I want to welcome you and Sage to the forum. I am sorry Sage isn't feeling well.

We are here to help you anyway we can. I know Marianne and Lori are helping you already. Please give us any testing information you can because that will also help lead us in the right direction to help even more.

Take care and we will hold your hand for support through this challenging time with Sage.

[frijole]

Glad you found us because many of us, myself included, have been down long, winding, confusing roads and sometimes it is just nice to have others to talk to and get advice from... and we get that because we have SO been there.

Like Marianne I am wondering if perhaps Sage's cortisol didn't go too low and thus the changes. By chance do you have copies of the tests (acth) that were done when the vet was telling you everything was 'normal'? If not, you paid for them - go get copies of all tests that were done. Then post them in the order they were done so we can take a 'looksy' at them.

Take a deep breath and just know you aren't alone on the journey any more ok? Hugs, Kim

[busyman370]

Has your vet discussed trying some prednisone to possibly shrink a possible tumor? I know that pred is not indicated if cortisol levels are high, but from what I've read, the tests done on Sage gave mixed results.

This is only a thought that you could run past your vet and get his/her opinion as it applies to Sage.

Also, if it is believed that Sage does have Cushing's, but things are just not being controlled well, switching her to Trilostane may also be something you may want to discuss with your vet as it works differently from Lysodren and may be better tolerated.

These are just my thoughts as I can see that you are searching for things that may help Sage. My heart goes out to you and I want to offer you whatever I can to possibly help you.

It can't hurt to run things by your vet. Usually they have a good handle on things, but you never know that by mentioning one little thing, it could jog the vets mind toward a different direction.

I have found that any good vet will probably have a quick response to any of this sort of questioning, and will tell you why they either agree or disagree.

I do hope that you can get things going in a better direction for Sage, and for you too.

Fred.

[Sage]

Thank you for the support.
This has been a marathon through modern veterinarian medicine for answers based on overly sensitive testing methods that merely take one frame of film out of the epic hormonal opera taking place in our dogs. It is from that one moment we capture, in a fluid and constantly changing stream, that we call zero and then then measure from, that we base our chemical response in hopes of restoring our dog’s thermostats to their healthy default settings. Frustration for all involved, but steady work for the labs and pharmaceutical companies.

Labblab: I did not have another ACTH test done but did have a blood panel done. She was given .2mg of Thyrosyn based on those results. I do understand your point for testing now for Addisonian like issues. Sage had 4 ACTH tests, Jan 21, 2011 (the day the initial Lysodren introduction phase ended based on normal water intake and appetite. She had started the Lysodren at 375mg Jan 15,2011), April 8, 2011 (the day her maintenance dose was established and begun), and then July 1 and August 19 (with a T-4) also in 2011. Notice the time between stopping the initial big dose of Lysodren (Jan 21) and the time she started her maintenance dose (April 8,2011). During this time, based on the Jan 21 ACTH results, we were told to give her 2.5mg of Prednisolone twice a day and slowly decrease this based on her behavior which we did and stopped the Pred in late Feb. 2011. It wasn’t until April that her water and appetite showed an uptick back to Cushoid that we were instructed to begin the Lysodren maintenance dose (125mg twice a week).
Q: Has anyone else using Lysodren experienced such a long gap between the initial Lysodren bombardment and the resumption of the maintenance dose?
Perhaps you are correct that the Adrenals were knocked way too low from the outset, because our dog never recovered mobility, energy, or appetite. All the maintenance dose seemed to accomplish was making her drink a bit less and wiping her out in every other way. It has just been a slow painful glide at a very low level of getting by. Which is why by Thanksgiving (late November 2011) I was at my wits end “waiting for the Lysodren” and decided on my own to stop giving it to her.
I have little to no faith in the ACTH tests with Sage due to the history of her mixed results but perhaps looking at another blood panel wearing Addison glasses might help develop a new approach to confront those issues.

[Sage]

Tankster: (you wrote)
“But that is one thing I regret now. If I was certain that indeed it was a macroadenoma that was causing his neurological problems and that it was only going to get worse, then I wouldn't be so torn over my decision to have ended his life so soon.”
…
You did not end your dog’s life; you saved the life that your dog had lived by helping him pass with some dignity. We should all be so lucky in the face of becoming vegetables that a billion upon billion dollar industry is waiting to suspend us in when our bodies fail.
Sage’s active life is 5% of what it was just over a year and a half ago. But she still sleeps soundly and dreams, I’m sure, of flying through the mountain trails and going to work with me most every day. And she sleeps 18-20 hours a day so that is a lot of memory play. I will know when her pain begins to ask even for her dreams of the life she has lived. And that is ok, and Tankster thanks you somewhere, somehow for stepping in and saving the life you both shared.
And I thank you for your post.

[Sage]

Thanks again to the welcoming committee!
I will get any of the test results I do not have in Sage’s overflowing folder and present the numbers.

Harley poMMom: Sage is 10.5 now, 9 when all “this” started.

Busyman370:
Sage was given Pred based either directly on the Jan 21 ACTH results or based on info I provided the Vet toward the end of January on what was happening with Sage at home at the time. While I have read about Pred being used for a wide variety issues, I was given it for adrenal insufficiency following the initial bombardment with Lysodren. I was also told to keep some by when we first began the therapy in case of an adrenal crash.
Pred has a host of side effects with extended use, one of which is Cushing’s itself. But next time I’m at the Vet I’ll ask about Pred and tumor shrinkage. –Thanks for the info.

Frijole:
I will try and get all these tests together and posted. I do have one here in front of me and it is the ACHT test given the day after we stopped the initial phase of Lysodren.
Jan 21, 2011 ANTECH Diagnostics
Cortisol Sample 1 <0.7 (result) 1.0-5.0 (Ref. Range) “LOW”
Cortisol Sample 2 0.7 (result) 8.0-17.0 “LOW”

Sage’s low Dex Suppression Test on Jan 6, 2011:
OHR 4.0 Ref. Range: 1.0-5.0
4HR 3.8 (High) 0.0-1.4
8HR 2.8 (High) 0.0-1.4

Her Ultrasound Report of Jan 11, 2011:
“The kidneys are normal in size and architecture. Both adrenal glands are plump in shape and mildly, but overtly, enlarged (left 7, right 8 mm thickness). Adrenal mass lesions are not identified. Splenic appearance is normal. Then liver is mild to moderately enlarged in size and rounded in margination. Hepatic parenchyma is diffusely and mildly mottled. The gall bladder has a small amount of dependent debris, but no wall thickening is present. No binary duct abnormalities are identified. Gastrointestinal features are normal without wall thickening or wall layering changes. Pancreatic appearance is also normal, without thickening or other lesions. The urinary bladder and other abdominal features are not remarkable.
Diagnosis/Impression:
Bilaterally enlarged adrenal glands, compatible with hyperplastic change associated with pituitary-dependent HAC. Moderate hepatomegaly with prominent parenchymal mottle, non-specific, but also compatible with HAC.”
…

[labblab]

I really think you need to have another ACTH done, along with a standard blood panel to check Sage's blood chemistries. You are right that the lab tests are capturing a single moment in time. But combined with her symptoms, if Sage's stimulated cortisol level is still too low at ANY time right now, you will have confirmation that she is in need of supplemental hormones, perhaps for both her cortisol and her aldosterone. Giving her the supplemental meds would be a relatively easy fix for her discomfort, so I strongly encourage you to get that testing done ASAP.

Marianne

[Sage]

Marianne:
I understand.
90% of my frustration has been the ACTH testing… which deliver numbers that contradict her behaviors and symptoms. Sage has proven to deliver any result for her ACTH tests regardless of the direction she is heading. Sad to say but I just don’t trust them anymore for they have launched us down roads that end up making matters worse, never better, not once.
Her body has been Lysodren free since November 25, 2011. I believe she would be dead by now if I didn’t stop the Lysodren.
The only symptoms to return from the original set were water intake and overall weakness, and now accompanied by many neurological disruptions. Where is the ravenous appetite? Where is the pot belly? Her hair and skin are fine… She could see before the Lysodren and now she is almost blind? Is that why she circles (no vision in the right eye)? Or did the toxic knock down of the adrenal cortex unleash a macro P tumor to grow unchecked?
I don’t have the money for these nonproductive tests. Not all dogs have ACTH testing on their menu…been there, done that…got nothing accomplished from it. Yes you get a “measure,” a “number” with every test…that does not mean it represents an actuality in all dogs.

All that frustrated rambling aside…
I am going to veto myself and do as you say. I don’t think I can see straight anymore. I will take her in for one more ACTH and a complete blood panel for the single purpose that there is a chance she might actually need now what the tests originally claimed she was overloaded with when all this began.
Thank you for the opinion…..

[jillandkoby4]

Hi!

I read your story and it sounds so familiar to what I am experiencing right now too. I don't have the knowledge that lots of the Moms have on this board, I am a newbie too. My poor Koby is on Trilostane & is having similar issues to what you, Lisa & Tankster are having. Last Fall he would go for long walks & now he barely moves at all. My vet was going to refer me to a neurologist at Cornell, but I was hoping I could blame his behaviors on his ACTH levels & the trilostane, so I put the referral on hold. But now after reading your story & seeing that this tends to be common, I am reconsidering this decision...I might make an appt for the neorologist. I agree the cost of all the testing is expensive & I am not sure how much more I can do. But the thought of losing him or having him in pain is unbearable. I feel so bad seeing him in the state he is now -- and I agree, Koby seems to be in "space" too.

Hang in there & try to get some sleep. I have been sleeping downstairs with him for the past 6 weeks, so I really feel like we are in the same boat!!

[labblab]

Can you possibly post the results for the additional three ACTH tests after the first one that was performed in January? I hear you as far as the fact you're feeling totally frustrated that Sage has done so poorly during this past year! But the test results themselves are only half the issue -- the other half is the treatment recommendations made by your vet based upon those test results :o. So before we throw out those test results as being useless, let's try taking a look at them to see if we can help sort out Sage's response to the medication.

Marianne

[Squirt's Mom]

Hi Mom,

I am so sorry you are feeling so frustrated. It is hard enough to deal with Cushing's when things are clear-cut and we feel confident in our own knowledge and experience. To have been made to feel that nothing you have tried is helping, that what you have done so far has been useless and even harmful, is just so sad. :(

Cushing's is very difficult to diagnose for many reasons and the testing itself can be highly confusing and contradictory. Both parents and vets get in a hurry to start treatment without a fairly solid diagnosis. Then to compound this, many vets don't know how to interpret the tests and end up recommending treatment based on faulty interpretations...all of which can lead to a real mess. It is my fervent prayer that one day there will be a definitive test for our cush babies that is simple, easy on them, and us. But until that day, we have to rely on what is available, learn as much as we can ourselves, and be strong advocates for our babies.

For example -

an 21, 2011 ANTECH Diagnostics
Cortisol Sample 1 <0.7 (result) 1.0-5.0 (Ref. Range) “LOW”
Cortisol Sample 2 0.7 (result) 8.0-17.0 “LOW”

While the post number of 0.7 truly is too low, the normal reference range of 8.0 - 17.0 is NOT correct for a pup on Lysodren. That range is 1.0 - 5.0 for both pre and post values. If a vet were to interpret a test based on the normal range given by the lab, even a pup with a good post of 3.5 would be seen as too low and the vets subsequent action(s) would be based on a faulty interpretation.

It really would help to see more of her test results. ;)

So, we can't always blame the testing when things go wrong - there typically are too many factors at play to lay the blame squarely on anything. If the diagnosis is correct, the treatment is correct, the timing of the test is correct, the test is performed correctly, and we have been observant concerning their signs, then we have the best information we can have to tell us what is going on with our babies. ;)

It is an unfortunate fact that treatment with either drug, Lysodren or Trilostane, can uncover some other problems - arthritis and tumor growth among them. But the tumor growth is rare with either drug and can occur without treatment so the drugs cannot always be blamed for the growth of a pituitary macro tumor. Macro tumors are more prevalent in pups with the smush-face profile like Bostons, Boxers, ect., tho any breed can develop one - with or without treatment involved. We have a tread that member who's pup did develop a macro started to share her experiences and invite others to do the same. You can read their stories here -

http://www.k9cushings.com/forum/showthread.php?t=3567

The bottom line is this - we can only use what is at our disposal toady concerning tests; we have to educate ourselves; we have to advocate for our babies even in the face of a long-loved vet who is steering us wrong; we have to do what is best for our babies in every situation to try to give them the best quality of life possible. If you feel not treating is going to be best for Sage, then that is what you have to do - but make sure you know all you can before you take this chance away from her. We will support you and help you in any way we can regardless, unless you decide to suddenly become cruel, which I don't anticipate at all. ;):) You have done a good job for your sweet girl so far. :)

Please stay in touch and let us know how Sage is doing.
Hugs,
Leslie and the gang

[Sage]

Jill&Koby:
Sage has been off Lysodren for just over 4 months. There was no change in the course of her health starting April 8, 2011 (the first day her maintenance dosage was established and administered) and where she is today. Some symptoms receded a bit, some advanced and new more neurological conditions appeared. Just kept on the Lysodren waiting for the adrenals to wake up and go back to work with the % of cortex left by that therapy. Then had to stop, based on my observations.
My Vet has been fantastic throughout this situation showing as much respect for my personal relationship with Sage as I do for his challenge treating this very difficult disease. We are not heading down to neurology because all there is to discover is an untreatable condition. I have to spend my money on the battles I can finish. All the while life continues with its own demands.
Our first pass at the situation did not go well. But I am gearing up for a second pass starting with a current ACTH test and another blood panel, as Marianne advised.

Marianne:
This next week I will gather all the tests up and post.

Leslie:
Sorry for the confusion on the 1/22/2011 ACTH test results.
Under “Adult Reference Range” the second Sample clearly states “8.0-17.0”. I don’t know why. And just a reminder, this was the test just after the initial phase of Lysodren was used; which began on 1/15/2011 with 250mg (am) and 125mg (pm) daily. On March 21, the signs we were to watch for were realized and we took her in for the ACTH of 1/22/2011 (<0.7/0.7). She did not start her maintenance dose of Lysodren until April 8, 2011 for it took that long for her to display signs that her adrenals had recovered. I took her in early Feb. 2011 because she continued to decline and we used Pred for about 3 weeks to help “jump start” the adrenals. There was no deviation in the course she was on. I will get the subsequent April 8, July 1, and August 19, 2011 ACTH tests and post them as written.
The maintenance dose was established from the 4/8 Test, and never adjusted after both the 7/1 and 8/19 Tests. The cortisol levels were just a bit higher than we all wanted to see, but close enough to not pull off and start over. Due to Sage’s weakened state, “starting over” with what I just witnessed Sage go through (accelerated declines) across the board, I just stopped the Lysodren (Nov.2011) and here we are today. Day by day.
...

Thank you all for your replies. I’m sure you have seen enough of these to read far between the lines and note my frustration but please don’t allow that to reflect my appreciation which is great.

[Sage]

As requested, here are all the tests...

Senior Wellness Blood/Urine (She was 9 years old)
1/3/11, 7/1/11, 1/7/2012

Platelet Count 513 (+) 439 (+) 333 (OK) 170-400
ALT (SGPT) 401 (+) 274 (+) 110 (OK) 12-118
Alkaline Phos. 740 (+) 938 (+) 113 (OK) 5-131
GGT 83 (+) 70 (+) 13 (HIGH) 1-12
Potassium 5.6 (+) 5.3 (OK) 4.9 (OK) 3.6-5.5
Na/K Ratio 26 (-) 28 (OK) 30 (OK) 27-38
Cholesterol 379 (+) 345 (+) 149 (OK) 92-324
Triglyceride 456 (+) 572 (+) 111 (OK) 29-291
T-4 0.8 (-) 0.2 (-) 2.8 (OK) 0.8-2.9
Free T-4 10.4 (OK) 7.0 (-) 47.1 (+) 8-40
Urine:
Specific Grav. 1.007 (-) 1.012 (-) 1.005 (-) 1.015-1.050
PH 7.0 (OK) 8.0 (+) 7.5 (+) 5.5-7.0
Protien 1+ (+) Negative Negative Negative
Occult blood 1+ (+) Trace (+) Negative Negative

ACTH: 1/21/11, 4/8/11, 8/19/11, 7/2/2011
R is (1.0-5.0) #1 <0.7 (-) 2.8 (OK) 2.9 (OK) 4.5 (OK)
R is (8.0-17.0) #2 0.7 (-) 14.1 (OK) 11.1 (OK) 15.2 (OK)

Low-Dex 1/6/11
#1 4.0 1.0-5.0
#2 3.8 (+) 0.0-1.4
#3 2.8 (+) 0.0-1.4

Misc:
7/24/11, Urine
Sp. Grav. 1.008 (-) 1.015-1.050
pH 7.5 (+) Negative
Occult Blood Trace (+) Negative

8/19/11, T-4
4.5 (+) R is (1.0-4.0)

1/11/11 Ultrasound
“The kidneys are normal in size and architecture. Both adrenal glands are plump in shape and mildly, but overtly, enlarged (left 7, right 8 mm thickness). Adrenal mass lesions are not identified. Splenic appearance is normal. Then liver is mild to moderately enlarged in size and rounded in margination. Hepatic parenchyma is diffusely and mildly mottled. The gall bladder has a small amount of dependent debris, but no wall thickening is present. No binary duct abnormalities are identified. Gastrointestinal features are normal without wall thickening or wall layering changes. Pancreatic appearance is also normal, without thickening or other lesions. The urinary bladder and other abdominal features are not remarkable.
Diagnosis/Impression:

Lysodren 1/14-1/21/11 Loading 375mg daily (250am/125pm).
Lysodren Maintenance 4/8/11 125mg twice a week.
Lysodren stopped 11/24/11.
Prednisone 1/22/11 Start 5mg BID Reduced to 0 next 30 days.
Thyrosyn 7/22/11-till present 0.2mg (BID).

[Squirt's Mom]

Hi Mom,

Has your vet ever talked to you about hyperthyroidism? Sage's T4 and Free T4 tests are high except for one in Jan of 2011 and this could well be the source of the signs you have been seeing. I would be calling the vet and asking about this asap. And I am talking hyPER, not hypothyroidism.

Hugs,
Leslie and the gang

[lulusmom]

I only have a minute but wanted to say that the post stim in April 2011 of 14.1 ug/dl was way too high to even contemplate a maintenance dose. At that point, you were back to square one and needed to reload. The next two acth stimulation tests were exactly what you could have expected in that they confirmed that a maintenance dose was not going to erode the adrenal tissue enough to get Sage's cortisol down to the therapeutic level of 1 - 5 ug/dl. It appears that your vet is not well versed in how to assess an acth stim test for purposes of monitoring treatment. You cannot use the normal reference ranges provided by the lab so the results you have marked as ok are not ok.

I suspect that Sage is not feeling well because her cushing's has been out of control since shortly after you achieved loading. My own dog had the exact same numbers on his acth stim test and never showed any signs of low cortisol. I gave him one dose of pred just because I was nervous but that was it. We started maintenance dose two weeks later and a stim test 30 days after that showed that his adrenal glands had regenerated too much in that two weeks and his post stim was well above 5 ug/dl so maintenance dose was increased.

You may want to consider having Sage see an internal medicine specialist. I had a problem with my own gp vet's lack of experience and eventually both of my dogs were placed in the experienced hands of an internal medicine specialist.

[Sage]

My Vet advised as to the meaning of these test results. My Vet told me exactly what these numbers meant, what they measured, how they were measured, and about the sensitivity of the tests themselves. But I did not have a “14.1” or an “11.1” looking back at me from Jan 2011 to November 2011, it was my dog. My dog was telling me that she had no ravenous appetite (in fact, the dog is barely eating at all), my dog is not losing her hair (never did), my dog was not having problems with her skin (never did), my dog was not getting a pot belly. She was still drinking more than normal (or was she just drinking more at a single visit because we had to carry her over and stand her up in front of her water), she was still having accidents in the house (or was it just impossible for her to physically make it outside anymore). Above all, Sage was also showing signs of complete confusion, vision loss, severe lethargy and severe physical incoordination and weakness that were NOT part of the original symptomology (Dec 2010).
My dog, not a “15.2”, told me that reloading would kill her. So against my Vets advice, I was the one who stepped in and “messed up” going strictly by the numbers. If we reloaded in April 2011 would my dog be alive today? Well I don’t think so, that is why it was not done. I was willing to employ a maintenance dose in “14.1 April 2011” followed by ACTH tests in the following months (7/2/2011, 4.5/15.2 and 8/19/2011, 2.9/11.1), but by November 2011, it was clear the only thing to do was to stop all Lysodren. Not by the “numbers” but by the fact that my wife and I have been living with Sage for the last 580+ days since this all began, not a Vet, not a lab tech, not an IMS, just us.

If we were going to be left with a crippled, neurotic dog that can’t even stand up in order to hit the perfect ACTH number, what’s the point of that? Our personal observations of our dogs gradual decline over the last year, not misinterpretation of tests by our Vet, is why we are where we are today; off any and all Cush-meds for now. I don’t think we (meaning my wife and I) would even consider another run at such a therapy unless Sage’s neurological symptoms resolved themselves, her appetite returns, she can stand, and walk.

I noticed in a statement I made above:
“The cortisol levels were just a bit higher than we all wanted to see, but close enough to not pull off and start over.” This should read “higher than we wanted (my wife and I)” and not “higher than we ALL wanted,” which would include the Vet; he considered 3 of the 4 ACTH tests high numbers. After April-ACTH (2.8/14.1), which was disappointing considering the close monitoring we did from Day one right up to April. Perhaps the April-ACTH was due to the Pred she took for 30 days (1/24-2/24/2011; 5mg then wean) because she was pretty wiped out from the loading and remained so through February and March.
The reason I wrote (OK) next to the Sample 2 ACTH results is because when a reading is either below or above range limits the lab would write “LOW” or “HIGH” on the test results page. When I posted my test results I used a (+) for high, (-) for low, and I wrote “OK” where they left any result within range blank. It says OK (blank) because it is in the range provided; not meaning the result is a positive indication.
We knew these were high but Sage’s health was plateauing at very poor and new stuff started happening in her brain. When I wrote the, “levels were just a bit higher than we wanted to see, but close enough to not pull off and start over,” That was because loading her up again at this point was off the table, she was too weak. The “numbers” were given a chance to move on the maintenance dose and so was Sage’s tolerance of this therapy. Sage had a bad week in November so my wife and I decided to end that therapy.
(Wow….that sentence I wrote is a mess…
““The cortisol levels were higher than my wife and I expected to see, but we felt Sage was too weak to pull off and start over.”
(There…that is what I was trying to convey)

Squirt’s Mom:
Blood work is being processed as I type, we’ll get another look at that Free T-4 and I will speak with my Vet. Thank you!

[Sage]

And here are the test results from yesterday’s (April 14, 2012) blood/urine tests.

Alk phosphatase 133 (High) R= 5-131
GGT 17 (High) R= 1-12
Calcium 8.7 (Low) R= 8.9-11.4
Amylase 272 (Low) R= 290-1125

T4 <0.5 (Low) R= 0.8-3.5
Free T4 4.8 (Low) R= 8-40
Specific Gravity (Urine) 1.007 (Low) R= 1.015-1.050

Cortisol 4.0 R= 1-5
(This was not an ACTH test, just one sample, no stim, for a look at this cortisol level.)
I had the money for either this Senior Wellness Panel or an ACTH test

Sage has been Lysodren free since late November, 2011.
She has only been taking 0.2 mg of Thyrosyn twice a day since July 22, 2011. Haven’t spoken with the Vet about these tests yet but will try tomorrow.

[labblab]

Boy, what a puzzle! One issue that does stand out is Sage's newest thyroid result which is definitely too low this time around. So at least that is one issue that can be approached easily with a dosing increase.

I do sympathize with your reluctance to continue with the Lysodren when you saw such worrisome neurological effects. I lost my own Cushpup to what we assume was a macrotumor, and I remember how tortured I felt at the time that I was still essentially forcing him to take his meds when he was acting so impaired :(. In retrospect, I wish I had stopped dosing him sooner than I did. So I can relate to your pain over this issue.

Not that I'm telling you anything you don't already know, but to me, the two most likely alternatives are: 1) misdiagnosis of Cushing's in the first place, or 2) the presence of an expanding macroadenoma. One thing that makes me question the Cushing's is the fact that her liver values are so mildly elevated, even "off" the Lysodren. That is not typical for Cushing's. But since you've had such exhaustive testing and no other explanation has emerged, I'm thinking the presence of the macrotumor is indeed a possibility. However, in that event, I would expect Sage to continue to deteriorate neurologically. Are you seeing continuing changes, or has she seemingly "plateaued" at this point?

Marianne

[Sage]

Marianne:

Her liver was working overtime when the blood of 1/3/11 was tested. Very high levels (ALT, ALK, GGT) which were still very high at 7/1/11. On 7/22/11 she started .2 of Thyroson, on 11/24/11 we stopped the Lysodren, and by her 1/7/12 blood test most all of these levels were “OK” with the remainder only slightly high. Say the numbers…
I believe all of Sage’s numbers and symptomology show PT Cushing’s as only a Chapter, in whatever has gone through her. Minus no hair loss, in December 2010, Sage was a poster child for Cushing’s, and the numbers lined up. By April 2011, we were dealing with something else and I agree with the macro tumor, but it is odd that the post-Lysodren blood is now suggesting that the liver thinks Cushing’s has left the building.
And now it is the Thyroid’s turn.
My Vet has increased her Thyroson to 1.5 tabs (0.2 each) twice a day with food to try and adjust the T4 levels. This is being done in hopes that it will get Sage some energy to work with and perhaps improve her appetite.

Sage has shown a very gradual increase in neurological symptomology. Compared to just one month ago she is less coordinated, more frequently spaced out, and is barely mobile. So yes these symptoms continue to evolve. I have hopes the Thyroson increase will allow her to regain some lost ground. It is very sad but I think we are going to have to step in soon and end her suffering. If she knew it was ok for her to die I’m sure she would already be at rest.
Sage is fighting this for us, all she has ever done is to make us laugh and be proud of her. And she has done this well for 10 lifetime’s worth of admiration and respect. She is fighting every day, hanging on, in my opinion, for us. Everything she has ever done has been for us…an investment I think, for that day she needs us to do everything for her.
We all should be that lucky.