New Cushings Case (12.5 y/o Boston Terrier)

[nvmybostons]

Hi everyone. My name is Jen and I have a 12 1/2 year old Boston Terrier named Jigsaw. She is my love (as I'm sure you all feel the same way about you kids, thats why we are meeting here). Here is her story, and please any input is openly welcome. Let me apologize now for it is a lengthy story.

Last January she developed what looked like vasculitis bilaterally on her ears, crusty, flaky, and would bleed. They were affected identically. We did a full blood workup and everything looked good, only her BUN was a a bit under the low normals. Instead of doing a biopsy, we decided to treat her with Tacrolimus topically first and monitor response. I thought I saw a little improvement after a month, but decided to add in pentoxifylline as well. After adding this I did see noticeable improvement, but never completely resolved. I realize that not all vasculitis cases completely resolve so at that time I was ok with what it looked like.

In late April, I noticed that she started drinking a little more and asking to go out as well. I continued to monitor and was increasingly getting concerned as time went on about diabetes, kidney, or cushings.

At the beginning of May, I went to my vet and expressed my concerns, and we did a first morning urinalysis and she had some protein, no ketones, with a specific gravity of 1.012. Oh crap. Stopped the Pentoxifylline. So diabetes is ruled out, but now kidney or Cushings. The next 3 mornings we did specific gravities and all 1.012.

Retrospectively, I was thinking about her haircoat... (she has always had hairloss due to a worked up diagnosis of Adrenal Gland Sex Hormone Imbalance when she was 9 months old) and realized that her haircoat had become brittle, losing more hair on her thighs, and she was still brown in Spring, I live in Oregon we don't see the sun until July (of course she is a sun worshiper so she is always brown in the summer and then black in the winter).

Now I was sure she was Cushnoid, right? We did bloodwork again, BUN again just under low normal, Glucose of course was normal, ALT, Alk Phos were NORMAL. What? How can that be? I was sure she was cushnoid. She did not have the classic signs of a pot belly, but.... By the time we did bloodwork, finally got the results interpreted, and spoke to the vet (after 4 days), she was just starting to show some muscle weakness in her hindquarters, a little bit confused, her water consumption really amped up, along with trips outside almost on the hour, oh and the stance... shifting her weight to the front due to her weakness in the hindquarters, certainly she is cushnoid. My vet said, I don't know, her bloodwork looks good, you need to go to the internist.

The internist had an opening 2 weeks later, and by that time her symptoms had really worsened. She couldn't jump up on the couch, she was wobbly, seemed like senility had really set in. We went over her history, and she too thought she was cushnoid. Good but not good. She said even though she did not have the classic pot belly and the elevated ALT and Alk Phos, 5% of patients will not. We did a LDD and sure enough, we confirmed Cushings. I felt ok about the diagnosis because I knew that with medication, she could have a good quality of life. She had been on Lysodren (mitotane) for 4 1/2 years with the Sex Hormone Imbalance with it never helping her hair regrowth, so I was advised to discontinue it slowly and monitor response. No change, so she has been off it for 7 years. For the Cushings, the internist advised me to try Trilostane, it being a better drug of choice, and of course I'm on board! Here we go!

She started the Trilostane 8mg bid, by the 10th day that evening, she started kinda a grunt, reverse sneezing thing, with slightly open mouth breathing. Odd, had never heard of this being a side effect, but regardless I was 2 hours away from Emergency and 1:30am so I gave her Pred, bummer because she was suppose to have her stim that morning. Two hours after giving her the Pred the symptoms went away, didn't matter though she was going to be at the internist front steps first thing that morning. Of course she showed no signs of the breathing issue, and I think they thought I was overreacting and maybe I was just seeing reverse sneezing or something...uh nope! Of course I had to wait another week for the stim and was advised to restart the Trilostane, so I did. Everything was going fine for the first 4 days and then the breathing thing started again along with hard sneezing, clear liquid drips from her left nostril, trembling, and lethargy. She was of course still eating! They asked me to videotape it, so I did. They were thinking maybe with her cortisol level decreasing, it was maybe allergies getting stirred up, maybe a tooth root abscess, a foreign body, tumor maybe.... I was advised to continue the Trilostane. I relunctantly continued with her symptoms worsening, and then her stim test. After seeing her for the stim test, the internist came out and added another possibility for the nose issue...aspergillis. Her thought was because it was only 1 nostril, and her lungs and heart sounded good. The slightly open mouth breathing was because she couldn't breathe out her nose. The other possibilities are still there, but she just added that to the list.

So her stim came back 2.2. I was advised to decrease to 6.4mg bid due to the results being on the low side of normal. I did but she continued to worsen. Two days later, I talked to the tech, and said I have to stop, she is miserable. Her drainage is a bit green now. The tech said continue until I get an answer from the doctor, I just couldn't!!! I stopped it that night. Thankfully the next day, another tech called and said discontinue for 3-4 days, monitor, and then restart the Trilostane at 4.8mg bid. After the discontinuation she amazingly got back to her old self a little bit each day. I couldn't believe the turnaround in her. By day 2 off of the meds, she had no nasal drainage, no lethargy, no sneezing, she was sunbathing again, waking me in the morning by standing on my chest and stretching, being all lovey. Thank god my girlie is back. I emailed the internist and explained the miraculous change in her and explained how reluctant I was at starting her back at 4.8mg, so she said try 3.2mg bid instead and if the symptoms return decrease to 1.6mg bid. I just couldn't bring myself to start at 3.2mg, I thought I'll start her low at 1.6mg and then if no symptoms, I'll increase to the recommended 3.2mg, etc.

I started her on the 1.6mg and the first 11 days, she was doing great. She was acting totally normal with no symptoms, until day 12. She started slowly with the nasal drip, then the green gunk, the sneezing, and now lethargy again. So far, no trembling. She had a stim today and hoping within the next 1/2 hour to have the results. I have decided to discontinue the Trilostane and monitor her response until she is back to her normal self again. I haven't spoken to the internist yet, but does anyone have any experience in using Trilostane on such a low dose? And has anyone ever dosed every other day?

I do realize that the nasal thing is not a side effect directly linked to the Trilostane, but indirectly causing this to occur. I suspect a tumor, I pray I'm wrong, but whatever it is, it seems to like the over abundance of corticosteroids she produces when off the Trilostane.

Oh and back to the Vasculitis with her ears... I don't think so! Since being treated with the Trilostane, her ears have improved with no Pentoxifylline and every other day application of Tacrolimus. So obviously she had calcinosis cutis with her ears not vasculitis. Hindsight is always 20/20, but if I had biopsied the ear, we would have known in January what the ears were, and then been able to look directly into the Cushings. With the Trilostane the water consumption and urination is back to normal as well, and her haircoat is already becoming soft again. I need to find a balance, and if anyone has suggestions or comments, please do.

As far as working up the nose issue, I don't mind spending the money, but with her being depressed and not herself, I can't even imagine putting her under anesthetic for a CT and rhinoscopy. What do you all think?

Thanks for the feedback!

[Roxee's Dad]

Hi Jen and welcome to you and Jigsaw,

Wow, it seems Jigsaw really is a jigsaw. I am so sorry for everything you and he are going through. I wish I could help, but I am sure others will stop by to welcome you and maybe be able to offer some help.

One of our admins just had her pup go through some nasal surgery, she may have some insights or idea's

http://www.k9cushings.com/forum/showthread.php?t=5603

[molly muffin]

Hello and welcome to the forum Jen and Jigsaw. What a cute name. :)

Wow, what a journey you have had. Do you by any chance happen to have the result of that LDDS test that you had done to diagnose the cushings? Also the ACTH tests that have been done. Is her BUN still low?

Okay, first I'll say I haven't heard of this symptom, but many of admins and mods have been involved with cushings for many, many years so they might have an heard/seen/read something. This is very baffeling, but the main thing to remember is that ever dog is different and responds differently.
Have you thought about going back to lysodren instead of the trilostane? I don't see you mentioning it but have you had an ultrasound done? Was an ACTH done prior to starting trilostane? I'm curious about the baseline readings on her cortisol, or if perhaps her cortisol wasn't risen and her sex hormones were. (in which case, it would be called atypical and lysodren is the usual treatment) To find that out, you'd see if her cortisol while off trilostane is risen at all and if not, then send a panel to UofTenn. They are the only place that does that specific test that we know of.

I do understand the worry about the tumor, I am guessing that is the thought due to the disorientation that you mention.

One other thing that can also be done, is to call Dechra (the makers of vetroyl) and tell them about this and see what they have to say. They will give you a case number that you can give to your vet and internist and will consult with them and talk to you. Now aren't you glad you live in the states as this is the only place I know of that offers that service. :) Many of our members have contacted Dechra directly and they have generally been Very helpful. I think this would definitely warrant a call as it is so unusual and seems to be related to either, the trilostane, or the cortisol being lowered. That is a question that needs to be determined for sure. Dechra 913-327-0015 I know they have a Toll Free number, I don't see it right now though.

Some of the others will be by to soon to welcome you and to pass on their thoughts.
I'm very glad you found us, and we'll be right here, all the way.
I do want to say, you have done awesome, on what has been a very long year. Hang in there.

Sharlene and Molly Muffin

[frijole]

I've been here since before trilostane was legally available in the US and I honestly don't ever ever remember having that kind of symptom/reaction to trilo. As I read your story I honestly thought you were going to end it with "and we found out my dog doesn't even have cushings".

Watch the dosing as we see it tends to have a cumulative effect and alot of dogs have to lower doses over time. The cortisol level is pretty low now. Lastly I think calling Dechra re your experience is a fantastic idea. We have a lot of members who have had success in talking to their vets... very helpful.

Glad you found us. Kim

[Squirt's Mom]

Hi Jen and welcome to you and Jigsaw! :)

I love the name! :cool:

You did a great job in providing the current history but there is quite a bit missing.

Why was she on Lysodren 7 years ago? Do you have the testing from then and would you post the results of all those here?

Between the time of stopping the Lyso and the current issues, how was she?

I am assuming Jigsaw was tested by the Uni. of TN to determine the sex hormones, intermediate hormones, were out of balance? If so, Trilo is not recommended for these pups by UTK; they recommend Lysodren for these pups tho there have been these pups on Trilo. Would you mind posting these test results from UTK?

Has she had an abdominal ultrasound? If not, I would have that done asap. It can go a long way toward confirming Cushing's as well as getting a look at other organs.

If I were you, I would stop the Trilo. I am not convinced Jigsaw has Cushing's. Has her thyroid been checked lately? Has she been checked for diabetes lately? Two conditions that mimic Cushing's and can cause false-positives on the testing.

Non-adrenal illnesses are notorious for causing false-positives on the LDDS. Was an ACTH done?

Have her ears been tested by a derm vet? IF this is calcinosis cutis, they will be able to confirm. That diagnosis would also go a long way toward confirming Cushing's as CC is pretty much a cush condition.

One thing I feel the need to mention even tho I don't want to - Trilostane has been shown to cause the cushing's pituitary tumors to grow, leading to a macro. Like others, I have never heard of the reactions you are seeing to Trilo or a macro but each pup is a unique biological entity so those reactions would be possible I suppose.

Trilostane-induced inhibition of cortisol secretion results in reduced negative feedback at the hypothalamic-pituitary axis. (causes growth of macros)
http://www.ncbi.nlm.nih.gov/pubmed/19041802

A MRI could confirm a macro if this is deemed a possibility. Cush pups with the brachycephalic skull, what I call the smush-face profile like Bostons, Boxers, etc., are more prone to macros for some reason. Sorry to add to your worries. :(

I'm glad you found us and look forward to following your story. You have done a great job with Jigsaw and she is very lucky to have you as a mom.

Hugs,
Leslie and the gang

[nvmybostons]

Thanks! Truly the support is terrific and greatly appreciated.

Jen & Jigsaw

[nvmybostons]

Wow, you all have so many good questions. :o I'll try to answer them in some sort of order. :confused:

October 2001 - (7 months) Spayed

January 2002 - (10 months) Beginning of hair loss, monitor

February 2002 - (11 months) Symmetrical hair loss on ventral trunk, medial extremities, and ventral neck
and chest, non pruritic, Blood work normal

March 2002 - (1 year)Diagnosed with Adrenal Sex Hormone Imbalance by Boarded Vet Dermatologist

University of Tenn Blood Results
Cortisol Base=23.9 Range=2.1-58.8
Post=153.9/2hr=112 Range=65.0-174.6
Androstenedione Base=9.9 Range=0.1-5.7
Post=63.9/2hr=19.8 Range=2.7-39.7
Estradiol Base=62.1 Range=30.8-69.9
Post=55.1/2hr=54.9 Range=27.9-69.2
Progesterone Base=0.34 Range=0.01-0.49
Post=2.65/2hr=1.43 Range=0.10-1.50
17 OH Preogest Base=0.54 Range=0.01-0.77
Post=5.73/2hr=3.37 Range=0.40-1.62
Testosterone Base=0.02 Range=0.01-0.32
Post=0.03/2hr=0.03 Range=0.02-0.45
Recommendation from UTenn due to her age, rec ultrasound to rule out adrenal tumor or ovarian stump.

March 2002 - Ultrasound Normal

March 2002 - Started Melatonin 3mg tid & Pentoxifylline 60mg tid No Change

April 2002 - Started Mitotane (Lysodren) with lots of Stim Tests over the next many months to finally get
her dose range 55-65mg sid. She never had any adverse effects from the medication.
Dosages were only changed due to the results of the Stim Tests.

*UTenn Blood work done yearly til 2005 w/ Stim Tests.

June 2006 - (5 years+) New Boarded Vet Dermatologist advised that if no improvement over all these
years, slowly decrease the Mitotane over the next several months and monitor response. If no
changes in hair coat, etc, then stop medication forever.

August 2006 - Stopped Mitotane with no side effects noted.

*Historically Jigsaw has always had a BUN of 5-8 Normal=7-27

August 2012 - Bloodwork/Thyroid Normal Ranges

January 2013 - Bloodwork/Thyroid Normal Ranges

June 20, 2013 - Bloodwork/Thyroid Normal Ranges

June 28, 2013 - Bloodwork
T4=0.9 Range=1.0-4.0
ALT=127 Range=5-107
GGT=21 Range=0-14

June 28, 2013 - Ultrasound Normal

July 3, 2013 - Low Dose Dex
Resting=1.0 Post 4 hour=1.6
Chest Films - Clear
Urinalysis Culture - Clear

July 12, 2013 - Started Trilostane 8mg bid

July 21, 2013 - UR issues

July 22, 2013 - Gave Pred 5mg, symptoms disappeared after 2 hours, no Trilostane that morning, restarted
8mg bid that night

July 24-25, 2013 UR issues again, advised to continue same dose until stim on July 29

July 29, 2013 ACTH Stim Test 2.2 (Trilostane 8mg bid x 1 week)

I think from there you can pick up the rest from my OTHER long story.

August 20, 2013 ACTH Stim 4.8 (Trilostane 1.6mg bid x 13 days) Bloodwork - Normal Ranges

Talked to a new Internist today, and we (together) decided to discontinue the Trilostane until Friday and see how she is feeling. If she is feeling totally back to normal, then she wants to restart at 1.6mg sid, if not wait through the weekend and check back in with her. We did talk about moving to Mitotane, but I felt she wanted to give the Trilostane another chance.... I kinda feel at this point, why not try Mitotane? I know she tolerated it last time, knowing that it was many years ago and her body has changed.... but maybe that is a better choice. Have any thoughts?

Okay I think that concludes the preface and body of my story, now I'll I need is that "they lived happily ever after". :rolleyes:

Thank you again for the input and support. It truly means the world to me that I am not alone and you all understand my feelings. :)

Thanks again,

Jen & Jigsaw

[Squirt's Mom]

Well, one thing I see right off the bat is the initial treatment for the Atypical is not correct. It takes the combination of melatonin and lignans to affect the intermediate hormones. One or the other alone will not work. ;) So I'm not in the least bit surprised the treatment prescribed didn't work even with the addition of the Lysodren. When the Lyso was started was she loaded or was she put on a maintenance schedule where she got the med 2-4 days a week? The melatonin and lignans can take 4 months or so to work so patience is required for this form of Cushing's. After that length of time, if the intermediates are still elevated, then the Lyso is added as a maintenance only.


June 28, 2013 - Ultrasound Normal

Were both adrenal glands seen and both were normal?


July 3, 2013 - Low Dose Dex
Resting=1.0 Post 4 hour=1.6

The LDDS has three numbers; there should be another result at the 8 hour mark. And would you mind posting what the lab says concerning interpreting the results? Most are the same but some do differ. ;)

If you want to switch back to Lysodren (Mitotane), and that would be my choice with the intermediates already elevated, you will need a wash out period between the two drugs of 30 days. Meantime, I would start her back on the melatonin and add the lignans asap. You can wait several months before revisiting the Lyso while you wait to see what effect this combo is having. ;)

Hugs,
Leslie and the gang

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/TreatmentInfoAtypicalCushings201107.pdf

[nvmybostons]

Excuse my ignorance, but what are lignans?

When the Lysodren was started it was at a higher dose 125mg sid. She never was put on a 2-4 times a week treatment, it was always sid.

So I understand about the 4 months for it to work for the Atypical Cushings, but now she is Typical Cushnoid, right?

In her last ultrasound, yes both adrenal were seen. I was told normal, although, they said the reference they give is the same for a 100lb dog and a 10lb dog, seems a bit odd to me, but....

I stayed for the LDD and I dont recall being there for 8 hours, I thought it was a 4 hour LDD.

So you would still rec. starting her on the melatonin and lingnans even though she now has typical Cushings (not just her haircoat)?
Her typical Cushnoid symptoms were PU/PD, muscle weakness in her hindquarters, confusion, brittle hair coat, suspected CC on her ears, ravenous, etc (Unsure if I made that all clear in my first post)

Are you a vet? I've worked in veterinary medicine since 1986, general and specialty practice, and always learning more and more. I just wish it didn't have to be first had experience, ugh!

Thanks again,

Jen

[molly muffin]

Hi Jen, no we aren't vets. Most of our admins though have years and years of experience with cushings. That comes from having a couple thousands members, over 300 of which are active at any given time it seems. Which is rather sad, to think of all them going through the same issues. Anyway, sorry, I got off track for a moment in my thoughts.

Dr. Oliver, from UofTenn, still the only place that does testing for Atypical Cushings (elevated sex hormones), was a great friend to k9cushings prior to his passing and his recommended treatment is still the recommendation to this day. He helped many members among them Leslie.

His passing was a great loss to the canine cushings community and to this forum. :(
What Leslie said is taken directly from his research papers and from her communication with him. It is also what is considered the standard for Atypical treatment and this is a combination of melatonin and lignans, with lysodren being added if no improvement is seen. Leslie or one of the others can tell you exactly how the lysodren is added.
I haven't had any personal experience with the treatment, but I am aware of Dr. Oliver's research.

I don't know about now with a cushings diagnosis, just that for Atypical that is the recommendation. I'm sure some of the others will pop in with their thoughts.

I can say that yes, an LDDS test will have a base draw, then the injection, then a 4 hour and an 8 hour draw. You are basically looking to see if and how much they will suppress at each draw 4 and 8. Some will suppress at 4 hour and then escape by the 8 hour. Some vets use the suppression rates at the different mark to try to determine pituitary vs adrenal cushings. I've had 4 LDDS tests for my dog in the last couple years. It is given the same the world over, so no different in Canada, Brazil or the US.

The ACTH test on the other hand takes a base draw, gives an injection and then an hour later takes a draw to see how much cortisol is dumped into the body from the adrenal glands. This cortisol is normally sitting in reserve in the adrenal glands and dumped after the injection. In some countries, if a compounded agent is used, then you will have two draws rather than one and they are about at the 1 hr and 2 hr mark. Canada uses this method for ACTH testing in most areas.

okay, wow, that was a lot of info for a simple question eh. :D

I agree, it doesn't matter how long you are in this life, there is always something new just around the corner to be discovered, learned, enjoyed and puzzled by. :) Part of that life is a mystery thing that seems to be never ending. :D I have to say I have learned so much on this forum about cushings. I knew Nothing it seems when I walked in the door. Yet, here we all are today, still trying to figure so much out. Cushings is horribly hard it seem to get a firm handle on. (We're still trying with my dog, and we just take it day by day, month by month)
That and a good colorist for the gray hair it gives me. :) LOL

Gosh, I don't know if that helped, or hindered, sorry, I did sort of prattle on for a bit. :)
Sharlene and Molly Muffin

[Roxee's Dad]

Hi again..

Lignans
http://www.lignans.net/lignansfordogs.html

From the UTK Endocrinoloy Treatment Considerations

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/20120316-LIGNAN-Write-Up-Revision02.pdf

Great source of info on Atypical Cushings at the UTK
http://www.vet.utk.edu/diagnostic/endocrinology/index.php

[Arizona Boston]

Hi Jen....I'm just paying a quick social visit. Have to say Hi to all the Bostons! I'm also fairly new here.

My Lucy started on Vetoryl for 10 months and then more recently changed to compounded Trilostane 40mg. No side effects, but no real improvement either....

I have found this board to be an amazing place where kind people share both personal experience with research to guide us Newbies along.

Good Luck to you and Jigsaw.

Shelly and Lucy

[Squirt's Mom]

Hi Jen,

No, I am not a vet nor a vet tech....just a mom who has lived with a cush pup for over five years now. A cush pup who started out as Atypical then became true cushinoid. ;) For those years I have sat at a computer day in and day out working on this and other dog forums, reading studies and cases, talking with vets and other cush parents. There are many others here who have much more experience and knowledge than I tho. Here we live and breath Canine Cushing's and all the associated conditions. We don't have to focus on much outside that arena so we are very well versed in Cushing's....even when compared to many vets out there who have to divide their attention among many canine conditions and situations. WE live it, they don't. ;)


March 2002 - (1 year)Diagnosed with Adrenal Sex Hormone Imbalance by Boarded Vet Dermatologist

University of Tenn Blood Results
Cortisol Base=23.9 Range=2.1-58.8

In March, '02 her cortisol was normal, meaning she did not have true Cushing's but was Atypical instead. The treatment for Atypical is as I earlier explained. John gave you links on lignans, which are plant phytoestrogens.



March 2002 - Started Melatonin 3mg tid & Pentoxifylline 60mg tid No Change

April 2002 - Started Mitotane (Lysodren) with lots of Stim Tests over the next many months to finally get
her dose range 55-65mg sid. She never had any adverse effects from the medication.
Dosages were only changed due to the results of the Stim Tests.

Was an ACTH done between March and April before starting the Lyso to know where the hormones and cortisol were at that point? If so, would you post those results? If not, that is scary! :eek:



*UTenn Blood work done yearly til 2005 w/ Stim Tests.

Do you have these results? I am assuming this is where her cortisol showed elevated?

Yes, the LDDS is an 8 hour test all over the world. The ACTH can take 2 or 4 hours depending on the stim agent used but the LDDS is always 8 hours and always has three values - pre, 4 hour, and 8 hour.


When the Lysodren was started it was at a higher dose 125mg sid. She never was put on a 2-4 times a week treatment, it was always sid.

So this was in April, after one month on melatonin only, no lignans...and apparently no ACTH? What was her weight at this time? Based on that dose, I'm guessing around 15-20 lbs? Once a day dosing with Lyso is not protocol for loading nor maintenance so I'm at a loss as to why it was prescribed this way. Loading requires am and pm dosing; maintenance is 2-4 times a week. And she took this once a day for five years?

So to answer your question concerning her now being true cushinoid, it is hard to say based on the tests we see so far. It is not typical for the adrenals to be "normal" in a cush pup, whether Atypical or conventional - the adrenals are just about always effected and show both enlarged or one very large and one small or even atrophied. So this is another puzzle in my mind. Did they say anything about the other organs on the US?

Nosy bunch, ain't we? :p
Hugs,
Leslie and the gang

[Squirt's Mom]

And, if it helps you feel any better, we have Admins here who attend veterinary conferences, subscribe to veterinary journals, walk around with ear plugs listening to Dr. Feldman, Peterson, and other endocrine gurus as well as have vets calling them for information and suggestions, and they are always in the background here. Should one of us post something that is incorrect or confusing, one of the Admins will set things straight. :)

[nvmybostons]

Hi all,
I am feeling a little sick to my stomach right now :(, and this is why... I asked the internist office to send me all of her labs and now that I am reading the labs, I'm thinking that I made a huge mistake.:confused: I now remember why it took a week or so before we started her on the Trilostane... internist was talking with the lab to find out about the results, then it was revealed that the LDDS post samples were lost at the lab:confused:. So I was there for 8 hours, her samples were taken at 9:25am, 1:25pm, and 5:25pm. The 9:25am cortisol level was 1.6 with Range 1.0-5.0. That doesn't seem right, does it? Maybe I am getting confused. Anyway I felt so strongly that she does have Cushings and with the internist feeling that way too, I did not even think about asking to have the test rerun (and I was charged for it, no refund on the mistake:mad:), and now I feel that I let Jigsaw down by not advocating that for her to be sure we had all of the information. Is it too late to do a LDDS test? Would any of you recommend that? I still feel strongly that she does have Cushings and something else??, but what if that test would have given us more information, and then she wouldn't be feeling so crummy now. Gosh, I just feel awful.

The other thing is, when I worked in Derm, we too always took a resting cortisol prior to giving the Cortrosyn, then inject wait 1 hour then redraw. According to her labs, there has been no resting cortisol prior to the injection, only the post. That doesn't seem right... right?
Again, I let down my Jigsaw :(.

I have a phone consult with the internist tomorrow about Jigsaw's lethargy, nasal drainage, etc. I would like help from all of you on what pertinent questions I need to ask? I think I know, but I would just like some input. Gosh I am just so upset with myself!!!!!:mad::mad:

Jen

[nvmybostons]

Sorry for the double posts, still trying to find my way around the site. I didn't even see the all the posts after my second entry, ugh! I will get back to you on the 2002 tests, etc.
Jen & Jigsaw

[nvmybostons]

When I was asking about any of you being vets, I hope you didn't think I was questioning your expertise. Like I said I have been in veterinary medicine for, well forever, and I have to say that over all those years talking and listening to clients about their pets, I too believe that a lot of them do know an immense amount of knowledge about their pets disease. I mirror your thoughts about vets having to divide their attention to a vast amount of diseases which then limits their time and energy into just 1 or 2 diseases. Thanks for all the info on all of you, and I so appreciate the input.

Jen & Jigsaw

[Harley PoMMom]

Hi Jen and a belated welcome to you and Jigsaw from me as well!


When I was asking about any of you being vets, I hope you didn't think I was questioning your expertise. L

Oh Jen, you have every right to question our knowledge and our replies because YOU are Jigsaw's voice and advocate, we completely understand the love and bond you have with your girl, ok?

Now, I am a bit confused :eek::confused: (doesn't take much). Is Jigsaw on any medication for Cushing's?

[molly muffin]

Oh gosh Jen, don't worry about asking if we are vets. You have ever right to know exactly who you are talking to and what knowledge they have to be able to give you Any advice on this most important topic.
We don't mind at all. :)

I'm trying to figure this out. So, the LDDS was only the pre draw 1.6 (this would be the resting) and then both post draws were lost. This was prior to starting treatment correct? As after treatment is started then only an ACTH would be of value to know what the cortisol is doing.
On the LDDS with the only number you have being the pre number, it is hard to tell exactly what it means. You don't know if she was able to suppress at the 4 and 8 hour mark since those samples were lost. (bummer they won't repeat that at no cost, since it wasn't your fault).
It should have the normal range somewhere on the test. Some labs use <1.4 as normal, and I've seen others that use <2.0 as normal. That is just your baseline though, it still won't tell you what suppression would be. :(

Yes, an ACTH should have the pre and post numbers included. Unless they are Only taking a resting cortisol and not actually doing the full ACTH. (We usually recommend the full ACTH especially with anything adverse going on, otherwise you don't get the full picture)
The post number should be between 1.45 - 5.4, if symptoms are controlled can be 1.45 - 9.1 Dechra, the pharmacutical for vetroyl does place importance on the pre number as well and do not like to see it go to low.

I think that you are doing an excellent job of trying to figure out a Very difficult case here. No dog reacts the same to all medication, but it does seem that when the trilostane causes the cortisol to go low, then that is when the nasal drip starts in and continues to worsen.

Did they Ever rule out a tooth problem, allergies, other options? I know they were mentioned but I don't see where they were ruled out as being the cause.

If she is on Trilostane now, then doing an LDDS is not going to be worthwhile now. A full ACTH test though might be what is needed if they confirm that they are not doing that in all the previous cases. If they are doing them, then they should provide both pre and post numbers. You are absolutely right about that.

I'd ask about finding the root cause of the dripping. Even irrespective of the cortisol levels, if they are high, then when they are high, the cortisol is masking a problem somewhere, that needs to be figured out.

hugs and deep breaths,
Sharlene and Molly Muffin

[nvmybostons]

Yes the LDDS was prior to starting medications, and the 4 post and 8 hour post were lost. I have not addressed to them about retesting or refunding my money, I wanted more information prior to speaking with them.

This last time, she was on the Trilostane for approx 12-13 days twice a day until her ACTH stim on last Monday. I stopped the trilostane that night due to the ramping up of the nasal issue since last Friday/Saturday. I am so frustrated that they have not been doing pre-cortrosyn values, how would they have all the information????? So they are not doing the resting on the ACTH, they are only pulling blood for the post.

So if she was off Trilostane for a period of time, would it be beneficial to go back and do the LDDS test? If so, how long would she need to be off the Trilostane for this test to be valid? Would there be a wash out time?

She has not had any workup other than bloodwork (CBC normal ruling out bacterial infection) regarding the nasal issue due to her feeling so crummy. When she is this lethargic, I have a knot in my stomach thinking about putting her under anesthetic. Of course the flip side is, if her cortisol is high due to being off the Trilostane then that isn't a good time to be under anesthetic either. Sigh! All the workup for the nasal issue involves anesthetic... either dental xrays, CT, rhinoscopy, skull xrays, etc. I really would like another option!

I do feel that when the cortisol is high, (if it is indeed high, I guess really don't have conclusive information due to their "testing" practices) that it is definitely looking like it is masking something in regards to the nose. I am getting more and more disturbed and aggitated about their testing procedures :mad::mad::mad:, do you all think I have valid reasons for my feelings? You know when it is your own dog, its so emotional anyway, so I want to be sure that I have some hard ground to stand on. ;)

Thanks again! I better start typing down my concerns and questions, so I can present it in a "powerpoint" presentation:rolleyes: when I speak with the internist tomorrow.

Thanks again,

Jen & Jigsaw

P.S. You guys are the best!!!!!:D

[Harley PoMMom]

The LDDS is the "gold standard" test for Cushing's but when other non-adrenal illnesses are present the LDDS is prone to false positive results. So with Jigsaw's nasal issues, I don't think the LDDS test would be useful right now. If this were me, I would have an ACTH stimulation test done, depending on the stimulating agent used, this test takes 1-2 hours to complete.

With the ACTH stimulation tests there are two blood draws taken; the first is called a pre/baseline/resting cortisol reading, the stimulating agent is then injected and after an hour or two (depending on the agent) the second blood draw is done which is known as the post.

If feasible, having an ultrasound done would probably be the next thing I would do. The ultrasound can be a very useful diagnostic tool as it can show any abnormalities with the internal organs and if the adrenal glands are visualized it may be able to differentiate between ADH and PDH. These are just my thoughts and I am sure others will be by to share theirs as well. ;)

Love and hugs, Lori

[nvmybostons]

Thanks Lori.

She did just have a ACTH stim done on Monday but without a resting cortisol, only the post... and now she is off the Trilostane, so the ACTH wouldn't be useful, would it?

She did have an ultrasound down July 28? or so and it was normal, although I do not have the written report. I'll call tomorrow for those first thing in the morning.

Thanks for you time,

Jen & Jigsaw
,,,
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[Squirt's Mom]

Mornin' Jen,

I hope I didn't come across as defensive. :o The goal was to be reassuring! :) You have every right to question folks who are asking you specific, personal questions concerning your baby's health. You are simply being a good advocate for your sweet Jigsaw - a critical aspect in caring for our babies that you already understand. I had to learn that one. ;) I just didn't want you to think you were chatting with folks who were flying by the seat of their pants and telling you what should and should not be. I am a member on some pages on FB that are specific and rather intensive learning pages....but folks get on there who have less experience and training that I and proceed to tell everyone how the cow ate the cabbage - more times than not, wrong. It is frustrating and at times scary, especially when the admins of the pages don't stop such things quickly. I didn't want you to feel that was the sort of place you had found with us. Question us any time you need and you will get honest answers. We are not here for us; just like you, we are here for Jigsaw...and gladly take you in the process. :)

Now, don't be beating yourself up over things in the past. You should know - I am the Queen of Guilt around here and I guard my throne most jealously. :o:D We all do the very best we know how to do at the time. We are trained from the time we are infants to trust those who are supposed to know more than we do, who have more experience that we do, who have more education that we do. It is often difficult to take that training and add the aspect of questioning those folks. We may not even know we can question them. There has to be some good measure of trust between us and our vets...but not blind faith. Many here have learned to their deep sadness that their dearly loved vet was in over their heads when it came to Cushing's.

You're doing a great job of putting the puzzle pieces on the board and the picture will come through as more pieces are placed. You're a good mom; don't forget that. Jigsaw knows and so do we. ;)

Hugs,
Leslie and the gang

[spdd]

Hi and welcome to the forum. I'm a little late doing this but here it is.

I have found on this forum so much information. If it makes you feel any better, my dog was diagnosed with cushings after multiple tests and even a visit to the veterinary college. Here we are almost 4 months later and it is still questionable. Taking the vets word for it I too put my dog on Trilostane and it has been a roller coaster ever since, so please don't feel bad. Before coming on this forum, I pretty much took my vets word as gospel.... that was a big mistake on my part and unfortunately my pup has had a few episodes due to wrong information... not necessarily wrong diagnosis. We are still working on that.
Everyone on here has been absolutely terrific. From interpreting test results to telling me "mah boy" may be overdosed, the knowledge here I just don't question at all. I have been through 5 vets now trying to get my pup stabilized.
So, without rambling any further, here's hoping Jigsaw will get straightened out, and we all know that's it's a day at a time, and of course we certainly share all the emotions that go with it.

[nvmybostons]

Thank you Thank you. I really needed to hear that. You guys are truly the best!!!!:) I will back off the "thrown of guilt" since it is already taken;). I will talk to the internist today and see what she has to say. Truly from the bottom of my heart I so appreciate the medical information you all have to share, and wow, the support is unbelievable. :) It is so comforting knowing that Jigsaw and I are not alone in this journey!:D

Jen & Jigsaw

[Boriss McCall]

Hi Jen & Jigsaw,
Welcome to the group.
My Boston Terrier has been on Trilo for the last year & it has really done wonders for him. It took us awhile to get him balanced out.
He does the reverse sneezing thing a lot. But, I haven't seen the breathing problems or goop. He does have a drippy nose occasionally & it is usually clear liquid. I think his is allergies.
I sure hope you start getting your answers soon. I know it can be very frustrating & scary.

[molly muffin]

Oh, what did the internist have to say? Anything interesting to report?

Sharlene and Molly Muffin

[nvmybostons]

Hi All,
The last 7 days has been a emotional roller coaster for me and a physical one for my sweet little Jigsaw:(.

So last week I did speak with the new internist about the LDDS test results in regards to only having partial results. She explained that, as it was not ideal that the lab lost a portion of the samples, she feels very confident with the results she does have (base & 4 hour post) along with her clinical signs and past history of atypical cushings that she does in fact have Cushings now. The way she explained it at the time, made sense to me, but of course because of my emotions were in play, I couldn't even begin to explain it now :confused:. As far as the ACTH pre/post samples, she stated that it is less expensive and less stressful (for some pets) to only have the post sample drawn. She stated that where she is in her treatment process, they only need the post sample. Again, the way and the reasons explained to me at the time made sense.

Jigsaw's Update. Over last weekend, while Jigsaw was off the Trilostane, the symptoms of the nasal discharge from her left nostril continued, so it was evident that this symptom was not due to the Trilostane or the decrease of cortisol. At this time it seemed to be more likely to be Aspergillis, Nasal Carcinoma, Root Abscess, etc. I restarted her Trilostane 0.1ml 16mg/ml bid last Sunday evening and her nasal symptoms and lethargy did not change. After many conversations with the internist head tech (whom I don't feel was listening to my concerns). She told me that since Jigsaw was off the Trilostane for 6 days, I would have to continue the Trilostane bid and then in 10 days another ACTH stim and if that one was good, then we could move forward on the CT, rhinoscopy, and biopsies. I just about flipped a lid. Then she told me if she does look like she has Asper, they would wake her up for General Anesthesia, wait for the Biopsies (3-5 days), then have her come back for the treatment with another general anesthesia. I was not happy!:( I held strong to my advocacy for my girl, so after that conversation, I thought I would call back and ask some more questions, but ask to speak to another tech or the doctor. Thank goodness, I got a tech named Kelly, what an angel:)!!!! She listened to all my concerns, was very empathetic of how I was feeling about how miserable and lethargic Jigsaw was feeling, and my concern of waiting another 10 days, and questioning why waiting for treatment 3-5 days, and then another general anesthesia :confused:. Kelly used to be an oncology tech, so her empathy and bedside manner was wonderful. Our communication even with me tearing up here and there was good, and she never made me feel like I was overreacting, or being a pain in the a--. The next morning she spoke with both of the internist, and shared my concerns... it was then decided by both of the internist to go ahead and proceed with the diagnostics this last Thursday. Kelly also explained why 2 general anesthetics and that is because of her age, and if everything was done at one time, she would be under anesthetic for 5-6 hours. When she explained that, I totally understood.

She went in Thursday morning, and I am so glad with Kelly's help that I stayed strong for Jigsaw to get it done sooner than later. So her CT did not show any tumors :), no tooth root involvement, although when the internist came out to go over the CT results, she was very surprised to see how her left nasal passage was COMPLETELY full of snot. I have to say that I felt that with the evidence of how badly she was affected, I was then taken seriously about how badly Jigsaw felt and then the internist realized that I was not exaggerating about how she was feeling (I feel the head tech was diminishing Jigsaw's symptoms, and that is why the internist was like that in the beginning). After the report about the CT, the internist went back to surgery and completed the rhinoscopy. She did find 1 suspected aspergillis plaque at the very back of her nasal cavity. She biopsied that area, and also the mucosal wall as well (just in case). It took 5 liters of fluid to flush out all of the snot in her nose :eek:, really amazing since she is a Boston, and doesn't really have a nose....;). Thursday night she was blowing liquid bubbles out of her nose, and had a hard time breathing through her nose due to the inflammation from the rhinoscopy. I thought that night and into the Friday morning, I may have made the wrong decision (we did not sleep all night)... she couldn't get comfortable and puffing through her cheeks for air, it was just heartbreaking. Friday mid-morning, she was able to maneuver sometimes to be able to get short naps. Yesterday late afternoon, the liquid from her nose stopped, and the swelling had gone down enough for her to breathe through her nose:D! Her and I both slept pretty good last night and slept in this morning. The internist did mention that her nose will probably be clear for the next 3-5 days, but then snot would restart, but we should have the biopsy results back by then, and figure out her treatment plan.

I can't even begin to tell you all how I am feeling now, now that she is feeling like her old self. Oh and by the way, the internist did say to me that with the other side effects that Jigsaw had to the Trilostane 0.5ml (8mg) bid (shaking/trembling), it was surprising because that is even a pretty low dose for her, and now she is back to 1.6mg bid. I feel that her Cushings is at a good place right now, knock on wood..... I will keep you updated with her biopsy results and how we proceed with the Cushings as well.

Truly thank you for the support for me and Jigsaw:). Just typing and sharing all of this has been so therapeutic for me and I have learned so much from all of you. Now that Jigsaw and me are moving toward another medical issue, I have looked for a forum similar to this one for Aspergillis, and there isn't one. Bummer.

You all are amazing, special people.:):D:);)

Thanks again,

Jen

[spdd]

Well hasn't Jigsaw been through a lot this week, and of course you.

I am glad to hear that she is doing better after all this.

Really hoping that the biopsy results are good and the dose of Trilostane works for her

I'll be watching to see just what the results are.

[molly muffin]

Oh you poor dear. You and Jigsaw have been through the wringer and now hopefully have come out on the other side with no more of these procedures needed.
I hope they can come up with a treatment plan that will allow her to be comfortable going forward and dry up the snot, whatever is causing it.
Let us know how things continue to go as we'll always be concerned for you and Jigsaw.

Sharlene and Molly Muffin

[nvmybostons]

Hi Everyone,
Update on last weeks procedure... I spoke with the internist regarding Jigsaw's CT and nasal biopsy results and I got the news that she does have a Pituitary Macroadenoma :(, but she does not have nasal cancer. The histopathologist could not confirm aspergilliosis, but the internist feels very strongly since I followed up on this issue so quickly, that may be why we did not find the organism. Since she was symptomatic with classic signs, and she did see one suspect plaque, she wants to treat her with voriconazole for the asper, Clavamox for secondary bacterial infection and continue with the Trilostane 1.6mg bid (such a low dose, eh?). So thats the scoop!

Dr did mention treatment for the macroadenoma, but I was feeling a bit uneasy about radiation treatment. I keep thinking Quality of Quantity, right? Live in the moment.;)

[goldengirl88]

Jen:
I am so sorry about the macro. That is hard news to swallow. Maybe you could reach out to Vicki or Kathy as they have dealt with this diagnosis also. Blessings
Patti

[nvmybostons]

Thanks all. I have to wonder "if" I should know more about the Pituitary Macroadenoma or just relish in the fact that she is feeling so well right now. I know that this explains what I thought was senior moments, but more likely due to the PMA. The thing is she is feeling so good now, that I am just so grateful for that. Early this morning at 1:30am she wanted out to potty and then played for 15 minutes retrieving her toys, barking, wanting to do her cute tricks, etc :):):):):):):):) She hasn't played and acted like that for weeks. So happy to have her have moments that she feels like herself. Maybe denial is the best for me at this point :rolleyes:!

If Vicki or Kathy can give me any positive aspects like a long length of time they had with their kids with PMA, I would like to hear from them, but if it is grave, I don't think I want to know. I usually always want to know and learn more, but perhaps this is a good time to just live in the moment and smile. :)

Jen & Jigsaw

[Junior's Mom]

I think that is a great way of thinking Jen. Enjoy every moment you have with your baby, and love every moment she is enjoying it as well.

[molly muffin]

Oh fooey. :( Sorry to hear about the macro. Kathy used a treatment that was a combination of prednisone and vetroyl for Buddy, but he already had some pretty strong neurological symptoms and seizures. That might be an option to talk about with your vet.
What you are looking for is, quality life for as long as possible. She sounds like she is doing pretty good, and enjoying her life just fine. :)
I know it is very hard. Mel too has gone through this, if she pops in and might have some insight.
One thing many have suggested is to live in the moment with them, take some wonderful videos and pictures and just enjoy it all.
I was thinking, that if you would like us to, we can add the macro diagnosis to your thread title so that others who have been through this or are going through, can find your thread more easily.

Hang in there.
hugs,
Sharlene and Molly Muffin

[nvmybostons]

Thanks. You are welcome to add me to the macro thread if you think my story could help someone else with their love, but honestly I think for my own emotional well being, living in the moment with her and NOT KNOWING HOW BAD it can get is the best for me. I can embrace the asper treatment to keep the breathing comfortable, but I am going to put it in my mind that her behavioral/senior-like moments are just that SENIOR moments.

Is there any way for me to only see post on this thread and not on the macro thread. I really don't want to read anything negative about the macro and I would like to continue visiting the site. I know denial!!!!!:confused:

Jigsaw did have a really good day today. She went for a short walk with her brothers at the park she likes. She did seem a little confused at times, but overall I think she enjoyed the excursion. She also got to go visit my niece when we took the other dogs to agility class tonight. She loves agility, flyball, and Superdogs!!!:) Here is a link to her more active times, enjoy it is really fun to see all the different dogs. Jigsaw is at 1:00 minute and 2:32 minutes :D
http://www.youtube.com/watch?v=8fU619lWgCo

In the next video, she is the first dog to run ;)
http://www.youtube.com/watch?v=_8LKhr1gfbg

Tonight she got so excited to see the other dogs run their courses, and a bit jealous watching Leia (my niece, truly Jigsaw's favorite person) run my mom's Boston, Dory. :o After class, Leia let her run through the tunnel a few times, and the smile :D on her cute little mug was priceless. A true athletic performer, what a girl! :cool:

Thanks for listening to me go on and on about how much I love her!:o

Jen & Jigsaw

My girlie, how I love her.

[LtlBtyRam]

It's a pleasure for me to read how much others love their furbabies. I sometimes wonder if people I see on a day to day basis really "get" it. I hope you have many more treasured moments. I will keep watch on your thread to hear more about you and Jigsaw.
Angela

[Squirt's Mom]

Hi Jen,

The macro thread is in another section (Everything Else) and you would need to be the one to share Jigsaw's story there because you will be the only one to see the changes. BUT this is not something you have to do - ONLY if you feel like it and ONLY when you feel like it if you ever do. The purpose of the macro thread is to help others who find themselves facing this diagnosis; signs observed, what tests were done, treatment options, and so on that those who have lived through this have shared. If this is not something that you feel would benefit you and Jigsaw, you do not need to read the tread nor ever see it. You can simply continue coming here to her thread. It is your choice, honey. We all cope differently and none of our ways are wrong. ;)

I am wishing you and Jigsaw many months of smiles on her cute little mug!
Hugs,
Leslie and the gang

[Boriss McCall]

I am so sorry to hear it is a macro. I think I would do the same thing you are doing. Enjoy EVERY day & try not to worry about tomorrow.
I know sometimes that is a lot easier said than done. but, I truly believe that dogs can feel your positive energy & it helps them.
I guess the only thing I would look into is if you do start seeing more signs that you are worried about think about the prednisone/trilo split to help with comfort for Jigsaw.
At least you know you have people on here to turn to if the time should come you feel like something like that could help. ;)
For now I agree enjoy your baby every single minute.

[molly muffin]

Oh my gosh, look at Jigsaw go!!! She just flies! I'm so impressed, what a girl.

Hugs,
Sharlene and Molly Muffin

[Harley PoMMom]

Loved the videos and thanks so much for sharing!! Jigsaw sure is good and one can tell she loves it!!

[nvmybostons]

OMG, All of you are not going to believe how well my little girlie is feeling :):):):):):):):):):):):):):):):):):):):):):):):):) :):):):):):):):)! I am so overjoyed. She went out to our field today and ran, not like in the videos from last night:rolleyes:, but ran like a 12 1/2 year old Boston should. She was so funny... she wanted to work, so I sent her around the tree and then the little devil jumped a little to bite my fingers, lol. She barked at me to work her more (she usually does run the show), so I sent her around the barrel a couple of times, omg I have my old girl back but in mach 2 instead of mach 10. :cool: Then tonight she was playing and playing, barking, carrying on. I could not have dreamed that she would be feeling so fabulous. Livin in the moment!!!!! After the roller coaster ride we have been on for the last 2 months, we so deserve some happy smiling times!:)

[spdd]

Just took a look at her videos. What a performer !!

Glad to read this good news first thing in the morning. We all need to hear good news about our pups. Yes, we certainly deserve some happy smiling times.

[addy]

:):):):):):):):):):):):):):):)

We love good news, relish the moment!!!!!

[Boriss McCall]

Those videos are awesome. She is having such a blast!

[nvmybostons]

Hi All,
Just want to give you all an update on Jigsaw. Its been 3 weeks since her rhino/CT and she is doing awesome, "knock on wood"! We are living in the moment for sure :) and so happy those moments are linked together to make 3 weeks. :D She is still on her Trilostane 16mg/ml 0.1ml twice a day and she is taking Voriconazole 25mg twice a day for her aspergillis. Again, thank you to all of you for the support you gave me during our roller coaster ride. She goes in next week for an ACTH stim, so we will know more about the Cushings next week. Her Asper is going to be at least a 2 month course of Voriconazole.

Love to all and all your hairy four legged kids,

Jen & Jigsaw

[LtlBtyRam]

Glad for the good news for you and Jigsaw. I hope the tests next week are good. I have tests next week too ;)
Angela

[Harley PoMMom]

So glad to hear that Jigsaw is doing so well! We will be looking for those ACTH stim results. ;)

Hugs, Lori

[Boriss McCall]

yay Jigsaw!! Glad you are feeling good & life is full of happiness. :)

[molly muffin]

Checking in and hoping that Jigsaw is still doing really well. :) I bet she is. That rhino seems to have done the trick

Sharlene and Molly Muffin

[Boriss McCall]

Hi!
How is Jigsaw doing? Hope all is well.

[molly muffin]

Hi :) I just wanted to pop in and see how you and Jigsaw are doing :)

hope to hear from you when you have time

hugs,
Sharlene and Molly Muffin

[molly muffin]

Happy Thanksgiving to you and Jigsaw

hugs,
Sharlene and Molly Muffin