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Thread: Emma - New Member Post

  1. #1
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    Default Emma - New Member Post

    I am so happy to find this site. My 13 year young female dachshund was diagnosed with Cushings Disease in late December 2017 and my vet is not open to talking about any aspect of treatment. She IS a good diagnostician so I let her do the initial ACTH Stim and follow up testing, but I have been searching for a vet with the good sense and compassion to at least talk to the owner of a Cushings dog about any questions that need to be answered.
    Ideally a holistic vet, but so far no luck. I had a referral today and I'm waiting for a return call with fingers crossed.

    I do not understand everything I'm reading on her lab work results, but ithe vet said her first ACTH Stim test on 12-27-17 showed a cortisol level of 27ug/dl which proved she had Cushings disease. She was put on a compound of Trilostane .01 orally. It is a small amount but I know it is chemotherapy and a very powerful drug. I started to read everything I could find on canine Cushings.

    I told the vet that her food was grain free already and asked her advise on other feeding matters. She got upset and said that whole grain free idea was a myth so i dropped it. Then she said she is a nutritionist and would have to charge me extra to explain things to me. So I started looking for a new vet that I can feel is working with me.

    I learned how to calculate dry matter to find the ratios of protein, fat and carbs in her wet food and the dry kibbles that I added to her wet food, because almost every article I researched said Cushings dogs need high quality protein, and very little fat and carbs. I found a good food to fit the bill, and started her right away. By the middle of February I started to worry more. It seemed to me that she was drinking more water and acting even more hungry than she was before. In every other sense, her abilities and limitations were no different, except she had to pee more as her water intake increased.


    Then I ran across the study of SDG or HMR lignans and Melatonin in treating Cushings dogs and it made so much sense!
    I knew the vet would probably have a melt down so I did not discuss with her. Hoping I can find a vet that is behind the science.

    I brought Emma in for testing again on March 29th, and the vet said her results were 10ug/dl and she upped her Trilostane dose.
    I asked the reference range and she said it is 2-9ug/dl. Is that correct?

    Does anyone have any information on the Lignan/Melatonin treatment they can share with me? Does it make a difference if its HMR or SDG lignans?

    Emmagirl




  2. #2
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    Default Re: New Member Post

    Hi and welcome to the forum.

    It appears your current vet puts herself on a veterinary license pedestal which she feels places her above reproach and certainly above working as a team with her clients. We pet owners play a huge role in our dog's treatment and I'm disappointed that this vet has limited your participation to doing what she says without questions. That's simply not right and not in the best interest of her patients. I am ecstatic that you found us and I'm super glad that you are looking for a new vet. We're here to help you learn so that you can become the best advocate ever for your precious Doxie Girl. You would be surprised by how many of our members have educated their gp vets. We can answer any question you may have and we have some excellent and very credible resources in our Helpful Resource sub-forum so be sure to check it out. Please see my additional comments in blue below.

    Quote Originally Posted by emmagirl View Post
    I am so happy to find this site. My 13 year young female dachshund was diagnosed with Cushings Disease in late December 2017 and my vet is not open to talking about any aspect of treatment. She IS a good diagnostician so I let her do the initial ACTH Stim and follow up testing, but I have been searching for a vet with the good sense and compassion to at least talk to the owner of a Cushings dog about any questions that need to be answered.

    The acth stimulation test does not tell you which form of the disease your dog has (pituitary vs adrenal tumor) so an abdominal ultrasound should have been done to make that differentiation as well as check surrounding organs for any non-adrenal issues that may be contributing to symptoms. Was this done and if so, which form of the disease does your girl have?

    Ideally a holistic vet, but so far no luck. I had a referral today and I'm waiting for a return call with fingers crossed.

    The ideal vet for a cushdog is a board certified internal medicine specialist. They do command a higher price but many of us discovered that they ultimately saved us money and we slept a lot better knowing our dogs were in good hands. Both of my dogs were diagnosed and treated by internal medicine specialists. If this is financially feasible for you, I would highly recommend that you consider this. If you live near a veterinary teaching hospital, they normally have internal medicine specialists on staff and are usually more cost effective. If you let us know what city and state you reside, members may be able to provide a name for you. If not, you can search for one in your area at http://vetspecialists.com/

    I do not understand everything I'm reading on her lab work results, but ithe vet said her first ACTH Stim test on 12-27-17 showed a cortisol level of 27ug/dl which proved she had Cushings disease. She was put on a compound of Trilostane .01 orally. It is a small amount but I know it is chemotherapy and a very powerful drug. I started to read everything I could find on canine Cushings.

    27 ug/dL is definitely consistent with cushing's. What symptoms does your pup have and how much does she weigh? When did you start treatment and have you had any post treatment acth stimulation tests done? If so, can you share those results with us? I am assuming the .01 oral dose is a syringe (volume) measurement as opposed to the actual milligram dose. Can you please look on the bottle and let us know what the actual dose is? It should look something like 30 mg/ml.

    I told the vet that her food was grain free already and asked her advise on other feeding matters. She got upset and said that whole grain free idea was a myth so i dropped it. Then she said she is a nutritionist and would have to charge me extra to explain things to me. So I started looking for a new vet that I can feel is working with me.

    I learned how to calculate dry matter to find the ratios of protein, fat and carbs in her wet food and the dry kibbles that I added to her wet food, because almost every article I researched said Cushings dogs need high quality protein, and very little fat and carbs. I found a good food to fit the bill, and started her right away. By the middle of February I started to worry more. It seemed to me that she was drinking more water and acting even more hungry than she was before. In every other sense, her abilities and limitations were no different, except she had to pee more as her water intake increased.

    Unfortunately there is no science based information on an appropriate diet for cushdogs but you are right, the rule of thumb is higher quality protein and lower in fat; however, unless your pup is overweight, has a history of chronic pancreatitis or has severe elevations in cholesterol or triglycerides, severe restriction in fat is not necessary. For many, many years, it was thought that cushing's predisposes a dog to pancreatitis but research shows this is no longer the case. Obesity and diabetes are not uncommon in cushdogs and these two things absolutely predispose dogs to pancreatitis so there is that connection. It would help us a lot if you could get copies of blood chemistry and complete blood count (CBC) and share the high and low values, including the reference ranges.

    If her cortisol is not being well controlled, you could expect no change or even an increase in drinking and peeing due to normal progression of the disease. It would help us figure that out if you provide us with the results of any acth stimulation tests that were done after starting treatment.


    Then I ran across the study of SDG or HMR lignans and Melatonin in treating Cushings dogs and it made so much sense!
    I knew the vet would probably have a melt down so I did not discuss with her. Hoping I can find a vet that is behind the science.

    Lignans and Melatonin are prescribed for the treatment of atypical cushing's. Dogs with atypical cushing's have elevations in one or more of the intermediate adrenal hormones but their cortisol is normal. These supplements are not effective in reducing cortisol in dogs with pituitary or adrenal dependent cushing's so I believe your current vet prescribed the appropriate treatment.

    I brought Emma in for testing again on March 29th, and the vet said her results were 10ug/dl and she upped her Trilostane dose.
    I asked the reference range and she said it is 2-9ug/dl. Is that correct?

    The therapeutic reference range is 1.5 to 9.1 ug/dL and results within that range are good but only if symptoms have resolved. I previously requested results from all acth stimulation tests above so I am wondering if this is the only acth stim test that has been done since starting treatment? How much did the vet increase the dose?

    Does anyone have any information on the Lignan/Melatonin treatment they can share with me? Does it make a difference if its HMR or SDG lignans? See my response above. These supplements are not necessary.

    Emmagirl
    I look forward to hearing a lot more about your precious girl.

    Glynda

  3. #3
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    Default Re: New Member Post

    Hello to you and your sweet girl — we’re so glad you’ve found us, as well! That’s a shame that your vet is so resistant to answering your questions and engaging in discussion. As far as the actual trilostane treatment protocol, it sounds as though she’s accurate in what she’s telling you. A post-ACTH range of 2-9 ug/dL is considered to be therapeutic as long as satisfactory symptom resolution occurs. If symptoms remain, then dropping to a lower level such as 2-5 may be beneficial. So hopefully the dosage increase will lower her cortisol to a level that is ideal for her. What’s not ideal, though, is for your vet to shun your questions! So I understand why you’re looking elsewhere.

    As far as the melatonin and lignans, unfortunately that combo is not generally effective in lowering excessively high cortisol levels. It is recommended by some clinicians and researchers for treatment of certain elevated adrenal hormones other than cortisol. For some dogs, cortisol levels are normal but elevations in other adrenal hormones produce similarly bothersome symptoms. Dogs who do have elevated cortisol typically have elevations in other hormones, too, but treatment of the cortisol takes precedence. So in your dog’s case, the trilostane treatment is appropriate and you’d probably want to hold off on thinking about adding in anything else until you see how she’s doing once her cortisol has been lowered to the desired range. However, if you’re interested in reading more about how melatonin and lignans is used to treat other adrenal hormones, there’s a lot of info on this resource thread:

    http://www.k9cushings.com/forum/show...Hyperestrinism

    Once again, welcome to you and Emma. And please do keep us updated.

    Marianne

  4. #4
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    Default Re: New Member Post

    Thank you for replying Glynda. She did NOT have an abdominal ultrasound. The vet told me there are several test to diagnose Cushings, but the abdominal ultrasound was VERY expensive (she placed an emphasis on very, and that the ACTH would tell her whether she had Cushings or not. Being new to all of this, I was letting her guide the care and treatment at first, before I knew she was not going to work with me be forthcoming with information I needed. So I took her comment to believe that all we were concerned with was finding out if Emma had Cushings. I found a vet that has good reviews and if she gives me a good feeling when I meet her, I will get the ultrasound done. Present vet said its adrenal, but I don't know how she knew that since you said only an ultrasound will tell me. She said it is not Atypical. We need that ultrasound to give me the full rundown, as you said. I know that now

    Board certified internal medicine specialist. I asked, and was told there are none in this area. I need to find that out for myself. The city I live in has well over 60,000 population and a major college; its hard to believe i won't find one. This is an internal specialist for animals, right? I live on a fixed income which is not very much but Emma had an issue with IVDD last April and both of my very old rescue cats were very sick last year. My vet bills for the year were over $2,300, but I took on the expense to fight what each of them had. It was a tough, sad year. I eventually lost both of my kitties. Emma recovered from the IVDD which was a miracle but it's necessary for me to be hyper vigilant in making certain she doesn't use steps or jump at any height. The nearest vet teaching hospital is 100 miles away. It would be very difficult. I live in Greenville, NC. Any help locating a specialist or wonderful vet would be a blessing.

    Emma is 13 years and weighs 19 pounds. She was 23 when she had the IVDD episode and she and I have worked hard to get her down to 19 pounds. The Cushings has added a level of insanity for me, because when she is hungry every 3 hours she gently whines on and off until the 5 hrs have passed. She ate 3 times a day every 5 hours starting at 8am, like clockwork. Knowing she can't help it and worried she's hurting I now give her some peeled cored apple or fresh vegetables to bridge the gap. Hey, no-one said this was going to be easy. She and I are fortunate I'm retired and I'm home with her.

    Her symptoms are excessive thirst, ravenous hunger, peeing very often and when she barks to go out she means now. Weve had two accidents in the house, but that isn't too bad and I'm a lot quicker letting her out. She has a small pot belly, but it's slight.

    Her initial ACTH was 12-27-17. She started Trilostane when her med was delivered on January 8th-2018. The first ACTH showed pre-cortisol 2.3, post-cortisol 27. Vet prescribed 50mg/ml suspension. 0.1ml by mouth every 12 hours. She did not drink as much water after i started Trilostane.Second ACTH done 1-30-18.
    (Both times she had Ema no more than 2 hours) Results: cortisone 7.5ug/dl. Pre and post was not on test results. I should think it is post. She told me it was 7.5 and said no change to her med. She weighed 20lbs that day. Third test 3-29-18. Cortisol 9.1 Weight back to 19.3 pounds. Vet said cortisol too high and increased her Trilostane to 0.125 for each dose.According to the ref range you gave me, 9 is not high enough to increase the Trilostane. 1/4 more between 0.1 and 0.2 on the syringe for dosing orally. I will ask for CBC blood count. When I asked for results (hard copies) of each test CBC was not included. From your reply it sounds like that should have been standard testing.

    I walk her a little strolls every few days. She loves it. I try to always keep her excited about any little thing. She responds to the tone of my voice. i haven't seen her mope around or act depressed. I'm trying to avoid that.

    I hope Ive answered everything. I appreciate so much your guidance, and if it wasn't so late at night and Emma wasn't whining to eat something because she isn't asleep yet, I would answer everyone that kindly replied to my post. I will get on that first thing tomorrow.

    Sharon (Emmagirl's Mom)

    She has decreased her water intake but it isn't noticeable. Hunger has not changed, although the possibility of her being used to getting food every few hours exists

  5. #5
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    Default Re: New Member Post

    Hi Sharon, Welcome to you and your sweet girl, Emma. I have taken the liberty of adding Emma's name to her thread title so it will be easier for you to find. We like to keep all posts and info about each pup in one thread so it is easier to look back thru the history for both members and you yourself. This thread will serve as a sort of diary or journal of Emma's journey for you. Glynda and Marianne have gotten you off on an excellent start so I don't have much to add. I do second your decision to find another vet - the one you posted about is of the ilk that is very dangerous for our cush babies because their arrogance doesn't allow them to work with us or to learn as things change, and they can with Cushing's. It seems every couple of years something changes with Vetoryl because we are still learning about how it actually works and some vets just won't keep up, they know all they need to know , which poses a serious issue for our cush babies.

    The choice of goodies to tide over til meal times are great! She just thinks she starving and I know how painful that is for you to see...but she is not in pain physically. Mentally and emotionally she is wondering what the crap is wrong with you that you won't feed her! But she is not in any danger, she's just experiencing the side effects of elevated cortisol. If you've ever had cortisone injections or had to take the Z-Pack of steroids you have an inkling of what she is feeling. It will fade once her treatment has balanced out and the cortisol starts to return to normal. The key at this stage is to not let her train you into giving her all the food she wants right now this second. Which is hard. I will never forget the look in my Squirt's eyes as her cortisol started to rise - it was heart-breaking and gut-wrenching but I knew the cause and I knew it would go away with correct treatment...and it did. Tho she came into this world a little piggy and remained a little piggy for most of her life, that look in her eyes never came back.

    I'm really glad you found us and look forward to learning more as time passed. You and Emma are part of our little family here now. Never hesitate to ask questions and we will do our best to answer. You will never be alone again. We will walk with you every step of the way.

    Hugs,
    Leslie
    "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.

  6. #6
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    Default Re: New Member Post

    Hi Marianne, thanks so much for writing.
    The funny thing about all of the research i did was this same premise kept coming up over and over....

    " Cortisol, the stress hormone, is produced in excess in Cushingoid dogs, which is the cause of most of the symptoms. Controlling the amount of cortisol means controlling the symptoms. Flaxseed lignans and melatonin both inhibit different enzymes needed in the production of cortisol. In restoring hormone levels back to normal, flaxseed lignans and melatonin can help manage the symptoms. Studies have found that the combination of lignans and melatonin not only reduce cortisol, but act directly upon adrenal tumor cells, effectively treating both typical and atypical cushings disease."

    http://http://cushingsindogs.com/201...ions-overview/

    That's why I was confused. I kept reading that melatonin and Lignans (MHR or SDG) could stop the production of the hormones that create cortisol in in dogs.
    Controlling the amount of cortisol means controlling the symptoms. I read it everywhere. Even in the info published by the UTCVM.
    I guess I was reading what I WANTED it to say... a simple method of controlling cortisol! But i can see by the links that you and everyone else sent to me that it is a lot more complicated. I will continue caring for Emma the best that I can and hoping for a better reading on her cortisol test in 6-8 weeks.

    Sharon

  7. #7
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    Default Re: New Member Post

    Quote Originally Posted by Squirt's Mom View Post
    Hi Sharon, Welcome to you and your sweet girl, Emma. I have taken the liberty of adding Emma's name to her thread title so it will be easier for you to find. We like to keep all posts and info about each pup in one thread so it is easier to look back thru the history for both members and you yourself. This thread will serve as a sort of diary or journal of Emma's journey for you. Glynda and Marianne have gotten you off on an excellent start so I don't have much to add. I do second your decision to find another vet - the one you posted about is of the ilk that is very dangerous for our cush babies because their arrogance doesn't allow them to work with us or to learn as things change, and they can with Cushing's. It seems every couple of years something changes with Vetoryl because we are still learning about how it actually works and some vets just won't keep up, they know all they need to know , which poses a serious issue for our cush babies.

    Thank you for adding Emma's name to the thread title. I noticed it right away! Its a smart idea to keep everyone's info easier to find.

    The choice of goodies to tide over til meal times are great! She just thinks she starving and I know how painful that is for you to see...but she is not in pain physically. Mentally and emotionally she is wondering what the crap is wrong with you that you won't feed her! But she is not in any danger, she's just experiencing the side effects of elevated cortisol. If you've ever had cortisone injections or had to take the Z-Pack of steroids you have an inkling of what she is feeling. It will fade once her treatment has balanced out and the cortisol starts to return to normal. The key at this stage is to not let her train you into giving her all the food she wants right now this second. Which is hard. I will never forget the look in my Squirt's eyes as her cortisol started to rise - it was heart-breaking and gut-wrenching but I knew the cause and I knew it would go away with correct treatment...and it did. Tho she came into this world a little piggy and remained a little piggy for most of her life, that look in her eyes never came back.

    That is good to know. I thought for sure she was in agony so I agonized with her! I'm embarrassed to admit this but I even curtailed my own eating so it wouldn't be harder on her! I eat when she eats!

    I'm really glad you found us and look forward to learning more as time passed. You and Emma are part of our little family here now. Never hesitate to ask questions and we will do our best to answer. You will never be alone again. We will walk with you every step of the way.

    Hugs,
    Leslie
    Thank you again for writing Leslie. This forum is wonderful. I feel better about Emma feeling better, already!

    Sharon

    clearly it will take time to get the hang of this! Sorry for the funky formatting.....
    Last edited by emmagirl; 04-04-2018 at 11:43 AM. Reason: goofed

  8. #8
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    Default Re: New Member Post

    My Squirt started out Atypical using only melatonin and lignans for a few years. In time, her cortisol did start to rise and it was obvious - like that look in her eyes I mentioned earlier. That combination did not halt the progression of the disease from Atypical to conventional with elevated cortisol BUT I believe it did help keep the cortisol from rising earlier than it did. In addition, we did not have to do the Lyso load - we went straight into maintenance. NOT at all proper procedure for using Lysodren but I was very much in tune with her and knew almost immediately when the cortisol started getting high. There is quite a bit of controversy about Atypical and the effect and role of the intermediate hormones involved in that form of Cushing's. Some believe Atypical is not even a form but more of an early sign. I do believe it is a separate form because of my journey with Squirt and seeing what those supplements did for her and how her disease progressed. Over the years most of the pups I recall who came here as Atypical DID develop conventional Cushing's just as she did but I still hold that Atypical is a form on its own and that the combination of those supplements do address the hormones involved. Melatonin on its own has the ability to lower cortisol at the levels experience with jet lag and is often used in humans for that but it cannot address the excessive levels seen in most cush pups by the time they are diagnosed. So in that respect, Squirt and I were lucky to have caught hers early and to have been able to start treating solely for Atypical before the cortisol took control. Just my 2 cents worth.
    Last edited by Squirt's Mom; 04-04-2018 at 03:04 PM.
    "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.

  9. #9
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    Default Re: New Member Post

    I believe i understand things re: Melatonin and Lignans a little better now. Thanks Leslie.

  10. #10
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    Default Re: New Member Post

    I'm very upset that the vet who originally diagnosed Emma's Cushings disease case was so careless or clueless about giving me the information needed to treat Emma correctly. I just read the Sticky posted by lulu's mom about GENERAL GUIDELINES for Dosing and Monitoring Treatment with Vetoryl (trilostane) and I now realize that Emma has not been given the proper treatment to fight this disease.

    The guidelines state that she should receive her Trilostane with food........Her vet never told me that, and it is not printed anywhere on the prescription bottle of compounded Trilostane! She was getting it within a 1 and 1/2 hr window, but had I been told, she would have received it with every meal. She will going forward, but what kind of time have we wasted?

    What's even more troubling are the standards for ACTH testing that lulu's mom refers to that have been sadly and incredibly ignored by this vet for Emma's testing.

    ACTH stimulation monitoring tests are performed between 4 and 6 hours after the morning dose given WITH FOOD. Some vets prefer to perform the test from 2 to 4 hours after the morning dose. Whatever timing a vet chooses, each and every test must be performed at the same time, every time. NEVER fast your dog for this test as results will be invalid.

    I dosed Emma at 7:30am and was called to pick Emma up at 10am. Clearly the 4 - 6 hr mark was completely ignored, and since I was never asked to bring Emma back at any specific time between 7:30a and 8:30a for post checking, it was not performed at the same time, every time. The last time (and 3rd time) Emma was tested she had not eaten. So as far as I can tell, none of her tests results have been valid since December 2017. Am I the only one unfortunate enough to have a vet that is so untrained in the testing and treatment for Cushings, or is it more prevalent than we can imagine?

    The 1st ACTH stimulation test should be done between 10-14 days after starting treatment. A dose increase is rarely done at this time as cortisol is expected to drift downward over the next few weeks.

    Again, news to me. Emma's first ACTH Stim. test was 31 days after starting treatment with Trilostane/Vetoryl. What does that mean regarding the results I received for that test?


    The 2nd ACTH stimulation test should be performed 30 days after starting treatment. It is at this point that any necessary dosing adjustments be made.

    Her second test after treatment, like the first, was left up to me. I wasn't given a schedule to follow, or even notified by the vet that further testing was needed. I brought her in 30 days after the first recheck. Does that mean that all of her results have been skewed and invalid? I really don't know what to do at this point.

    I have made an appointment with a new vet this coming week, and I don't know what to expect. What if this vet is no more knowledgeable than the first one?

    I am giving Emma every advantage i can when it comes to her environment, her attitude, short walks for exercise, a diet easier for Cushings dogs to live with....
    but is all of this negated by inappropriate testing methods?

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