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Thread: New and seeking advice on symptom management

  1. #1
    Join Date
    Jan 2017
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    Default New and seeking advice on symptom management

    Hello all,

    First, I just wanted to say that I'm so glad I found this forum. It has been helpful to read the posts of others going through the same thing me and my little one are going through. I wanted to post Bear's story, but I also have some questions.

    Here's Bear's story: Bear is a 6 year old Australian Shepherd mix and he was diagnosed late last year after an array of testing. He presented with weight gain, increased hunger, mild depression, excessive panting, and mildly elevated ALT and ALP values. He experienced changes in his coat quality toward the end of the diagnostic process.

    The initial thought was Cushings, but his LDDST was negative and his elevated liver values returned to normal with a month long course of Denamarin, so my vet and I sought out different diseases that fit his symptoms, in particular Thyroid disease (as he was only 5 and he didn't present increased thirst or coat changes at the time, and he was mildly bradycardic[not a Cushings symptom]). Bear's Thyroid Panel was within normal limits, but his Free T4 has always been on the low-normal side. We did a Urine/Cortisol Creatinine ratio test and that did turn up positive, but it's not definitive for Cushings.
    After months of trial and error to treat his symptoms, I got his weight down with Hill's Metabolic diet, but I never fixed the actual hunger and I tried a few trials of anti-anxiety and pain medications to get his happy go lucky attitude back.

    After awhile I was ready to see a specialist, but before I paid specialist prices (I'm a vet assistant and get a small discount at my hospital) I decided to run an ACTH Stim just to prove to myself it wasn't Cushings before I went. Sure enough, this test turned up very positive. Next we did a High Dose Dex test to find the tumor and again this test was negative. I started him on Vetoryl and took him to the specialist for a CT scan to find the tumor just incase I was able to do surgery and remove an adrenal adenoma. As it turns out, he does have the more common microadenoma on his Pituitary Gland.

    I write all this out so that maybe others will see this and think that if they went the LDDST route first and it was negative, maybe it would be a good idea to talk to your vet and to do an ACTH Stim. Approx 5% of the time, dogs test negative for LDDST and this was my situation. I have been feeling so guilty for all of those months I wasted trying other things to make him comfortable. This dog is truly the love of my life and is the reason I left my old job and am currently in the veterinary field. I have a pit in my stomach from just thinking about it and to be perfectly honest I cry probably more often than anyone else would, but he is my best friend.
    Bear is now controlled on Vetoryl twice a day. He gets a 30mg capsule in the morning and a 10mg in the evening. (He's about 40 lbs).



    Questions: So here are my questions to those dealing with this too. I have him officially controlled on medication. He has been controlled for several months now. I still haven't seen a change in his hunger. He never had increased thirst, but he is insatiable. Are your guys and girls still starving while on Vetoryl? Did Vetoryl help this symptom at all for you? If not, what have you done to supplement them? I've added green beans and I'll be switching him to Royal Canin's Satiety diet to help, but I just hate seeing him so hungry.

    What about coat quality? Bear still has a coarse coat that used to be so soft. I know that this particular symptom takes longer on Vetoryl to change, but what have you guys noticed? How long until you noticed a difference?
    On Vetoryl, I have seen a decrease in his panting (it's not completely gone back to normal panting), increased energy, and his liver values are normal again after several spikes throughout the months of diagnostics. Is there anything else that you and your vets have added to your pets regimen? I just want to do everything I can for my Baby Bear.

    Thank you for those that took the time to look at my post. It's hard being on the other side of vet medicine and being on the receiving end of bad news. I am so happy I have found a supportive community and I appreciate your time.

  2. #2
    Join Date
    Apr 2009
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    Georgia
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    15,292

    Default Re: New and seeking advice on symptom management

    Hello and welcome to you and Bear! I'm sorry you were sitting in "limbo" overnight, but apparently you were not able to retrieve our confirmatory membership email. Therefore, I've now manually approved your membership and you're all set to go.

    First of all, I hope you'll be able to be kinder to yourself re: the delay in Bear's diagnosis. Since there is no single 100% confirmatory diagnostic for Cushing's, you are in very good company in that regard . Many of us suffered through months of question marks and indecision, myself included. The important thing now is that Bear is receiving treatment, and that you've reached out to join our family.

    Thanks very much for sharing your diagnostic experience, though, because it does illustrate the challenges in confirming this disorder. We do have other members whose dogs tested negative on the LDDS and positive on the ACTH, and also vice versa. A negative on the LDDS is usually quite reliable, but as you say, a small percentage of Cushpups don't return a positive result on that test. So just as you say, the best advice we can give folks is: if their dogs continue to exhibit classic Cushing's symptoms even though they've tested negative on one of these diagnostic blood tests, go ahead and spring for the other, just for additional validation.

    Turning to Bear, when you say he is being controlled with the Vetoryl, have you been performing periodic monitoring ACTH tests in order to confirm that his current dose is truly optimal? Because that would be my first thought -- that perhaps he is in need of a dosing increase. So before going any further, I'll leave you with this question. Have you performed any monitoring ACTH tests since beginning treatment, and if so, what are the actual numerical results?

    Marianne

  3. #3
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    Default Re: New and seeking advice on symptom management

    Hi and welcome to you and Baby Bear!

    I will leave the comments on Vetoryl to those who use or have used that drug...I am a Lysodren gal. I will ask some questions to get them started tho -

    I don't see where you gave Bear's current weight? Do you mind sharing that with us? The new starting dose for Vetoryl is 1mg/lb (2mg/kg) - not all vets are aware of this change so I wanted to make sure you have that info.

    Does Bear have any other health issues? Is he on any other meds, supplements, or herbs? If so, what for?

    I assume everything else seen on the CT was normal?

    You say he is controlled - do you mind sharing the actual results of the ACTHs he has had? Dechra says the post # can go as high as 9.1ug/dl if, and ONLY if, ALL signs are well controlled. Otherwise it is optimal to get that post down to 5.1ug/dl. If his post is running a bit high that may account for the continued hunger. It could also be a learned behavior - something our cush babies seem to be real pros at! Fresh or frozen green beans, carrots, apples, bananas are all good to help them feel full without packing on the weight like treats, etc. will do.

    The coat is something that is different for each dog it seems. Some pups on Vetoryl will completely blow their original coat and regrow one that is entirety different. Have you ever seen a Boston with red, curly hair? I assume the skin itself is improving - thinness, bruised appearance - if they applied in the first place? No evidence of sores or raw spots?

    That's all from me for now; I'm sure others will be along soon to chat. Please never hesitate to ask any questions - if we don't know we will help you find the answer if possible. We are here to listen regardless - cry, scream, vent, laugh, whatever - we are here. You and Baby Bear are now part of our little family here at K9C and this family sticks together thru thick and thin. You are never alone on this journey.

    Hugs,
    Leslie and the gang
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  4. #4
    Join Date
    Apr 2009
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    Florida
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    Default Re: New and seeking advice on symptom management

    Hi and welcome to you and Bear! Marianne and Leslie have the questions covered so just wanted to welcome you to our family. Don't hesitate to ask any questions you may have. I look forward to learning more about Bear.
    Judy H. (Always "Maggie and Abbie's Mom" & now "Sadie Sue's Mom")
    Venice, FL

  5. #5
    Join Date
    Jan 2017
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    8

    Default Re: New and seeking advice on symptom management

    Thank you so very much for the kind words. It means a lot to finally talk to others going through this. I know my original post was getting pretty wordy so I left out the numeric and smaller details.
    I know that the LDDS is a reliable diagnostic tool, so that is another reason I went ahead to pursue a CT scan to confirm his diagnosis (and of course to locate the adenoma in case it was operable). As I'm sure you know, Vetoryl is a pretty scary drug especially for a dog that doesn't have Cushings so I wanted to be sure since he tested very negative on the LDDS.
    To answer your other questions, yes I have done 3 total ACTH stims so far. I am not due for his 6 month check up just yet. The first test was his diagnosis, the second was on 30 mg of vetoryl once a day (this was not therapeutic) and the third was after he had been controlled on 30mg in the morning and 10mg at night per his specialist.
    Here are the results:
    September: Pre: 3.1
    Post: 33.9
    October: Pre: 4.0
    Post: 14.0
    November: Pre 1.5
    Post 3.2
    I was planning on doing another ACTH Stim 3 months after his last one and then every 6 months going forward. I would love to know your routines that your veterinarians have been following. Like I have said several times, I just want to do everything I possibly can for him.

    -Britt
    Last edited by BabyBear; 01-22-2017 at 08:16 PM.

  6. #6
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    Jan 2017
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    8

    Default Re: New and seeking advice on symptom management

    Whoops, I thought I was replying to each post individually. My previous post was for Marianne and now I know for next time.

    Hello Squirt's mom!
    Yes, in regards to the new starting dose my vet and I were aware of the new dosing, but thank you for the information! I love hearing new stuff so please feel free to send over any new things you've heard and learned. Bear is 38-39 pounds (optimally about 30-32). We initially began under dosing due to the dangers of adrenal necrosis and began at 30 mg/day. This was not therapeutic, but it was worth a try. We bumped him up to 30mg in the morning and 10mg at night for a total of 40mg per day. This gave us a therapeutic post ACTH stim value of 3.2.

    Bear does not currently have any other health issues. His free T4 was 0.8 on his last blood work in December so, I'm monitoring him closely for hypothyroidism. His full thyroid panel was done in June last year when we were still in the diagnostic phase and this was normal. I get a break on blood work at my job, so I test him more frequently than most do. He has normal glucose values so we are not diabetic so far. He has had elevated ALT and ALP values but I am happy to say that after Denamarin and couple months of Vetoryl, his ALT is finally within normal limits again!! His ALP is still very slightly elevated but overall the bloodwork is trending in the right direction.

    He is not currently taking anything other than Vetoryl. Have you heard of other herbs and supplements to try? I'm very open minded. I consulted with my specialist in regards to melatonin and lignans (I had read about these online) but she said that she had not seen this help or hurt so I didn't add it in.

    The CT results were fairly normal. He has a microadenoma on the pituitary. He showed mild bilateral enlarged adrenals (no shock there). Found some funny things like he has a deviated septum and a case of tennis elbow, hahaha. But I did go ahead and do some physical therapy visits for that because he had a bit of bicipital groove remodeling and I don't want him to be too arthritic there when he's older, although I can't fix the current damage. I was hoping to prevent more in the future. In the end I'm still glad I did the CT and found some of these things that wouldn't have been noticed for a few years down the line. I also did X-rays several months before hand and he did have some rounding of the edges of his liver.

    I know this is way more than you ever wanted to know about someone else's pet haha, but to finish answering your questions I know that the hunger can be learned. It's just that he was never a dog that cared about food until last year. It was actually to the point where I would beg him to eat somedays and he would just ignore his breakfast and wait for dinner. I haven't tried bananas so I'll go ahead and add some in. It's just hard to see him so ravenous when he was never like this before. 30 minutes before dinner and he will be pawing at the bowl. It's so sad. What kinds of food (kibble brand) are you feeding your pet?

    As far as skin, I have seen some improvement on the thinness of his skin on his belly. He never had the bruising, rawness or sores. He did have bilateral hair thinning on his shoulders and near his hind, but that has mostly resolved. His hair is just still so coarse. I wonder if its permanent, although this is the least of my concerns. I just wanted to mention it since Vetoryl is supposed to fix it.
    Thank you so much Leslie for your reply.



    And to Judy, thank your for the reply. It is so nice to feel welcomed.

    --Britt
    Last edited by BabyBear; 01-22-2017 at 07:30 PM.

  7. #7
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    Apr 2009
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    Georgia
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    Default Re: New and seeking advice on symptom management

    Hello again, Britt, and thanks so much for all this additional information! That November monitoring ACTH result looks great, so unfortunately it seems as though the excessive hunger is simply taking a longer time to resolve for some reason. And has already been mentioned above, the color and consistency of a dog's coat may indeed be altered permanently after beginning treatment. The good news is that bare patches fill back in -- the startling part is that the nature of the regrown hair may be different.

    As far as treatment regimens, Dechra recommends ACTH testing every three months, forever, after dosing has been stabilized. I've seen a few vets who are willing to space it out to every six months as long as a dog remains clinically well. So that is a decision you can make further down the road, depending upon your comfort level with Bear's behavior and appearance.

    One more quick question: in addition to abdominal imaging, it sounds as though you must have also done a CT of his head in order to have knowledge as to the size of the pituitary tumor. Is that correct? I'm just curious about that.

    Anyway, it sounds as though, overall, you guys are doing great and we'll be anxious for continuing updates.

    Marianne

  8. #8
    Join Date
    Feb 2016
    Location
    Washington
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    Default Re: New and seeking advice on symptom management

    Hi Britt! Welcome to you and Bear!

    I have nothing to add to all that has been said already. I thought I'd posted on your thread to welcome you but apparently hadn't...

    You're doing a great job!

    Shana
    Mama to Jackson and Kira, and my darling Cushing's angel, Visuddha

  9. #9
    Join Date
    Jan 2017
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    8

    Default Re: New and seeking advice on symptom management

    Marianne, I had heard about the every 3 month vs every 6 month ACTH stim testing depending on the doctor. I figured I would continue with the 3 month regimen for now and if I'm not seeing large fluctuations I would continue with a 6 month plan in the future. Bear is only 6 so, fingers crossed, we have many, many more ACTH stim tests to go in his lifetime.

    Speaking of lifespan, what is the general consensus after diagnosis that you've been seeing from others here on the forum? It seems all over the board for the Cushings patients at my clinic (especially depending on the initial age of diagnosis). For pets like Bear who are young and controlled, are we seeing more than a couple years? The internet is scary place to search for a number and that's typically what I've found. I really don't want to believe that.

    And to answer your question, yes. I sprung for the full body scan. As much money I have put into Bear, another couple hundred to get the full body was worth it to me. The CT of his head specifically showed a slightly enlarged pituitary gland, thus indicating a microadenoma on the gland. It's not significantly enlarged, so it's really just a lesion but enough to confirm the diagnosis (especially with the bilaterally enlarged adrenal glands secondary to them overworking due to cushings disease).





    Thanks for the welcome Shana and I appreciate the encouragement!



    --Britt

  10. #10
    Join Date
    Apr 2009
    Location
    Georgia
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    Default Re: New and seeking advice on symptom management

    Britt, I'm happy to tell you that throughout the years, we've seen many dogs who have essentially lived out their normal lifespans once the excessive cortisol comes under effective control. Just as you have experienced in your clinic, the prognosis for each individual dog depends upon a whole host of factors including age, overall health history, tumor growth, development and progression of secondary problems, other unrelated health issues, etc. Given all the various combinations of factors, the commonly cited two-year survival time may indeed be accurate as an average. But that discounts the extended lifespan that is possible for a younger, otherwise healthy dog who receives careful treatment and monitoring. So we'll be hoping for many more good years for Bear, just as we have celebrated with other members here!

    Marianne

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