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Thread: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

  1. #1

    Default 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Hi everyone!

    My 15 year old Maltese Maggie was diagnosed via the LDDS test yesterday. Numbers were

    5.3 (1-6 ug/dL)

    2.1

    3.7


    IM specialist started her on 5 mg vetoryl twice daily. She’s about 4kg Does this sound ok? Vet will NOT compound due to potential variances in bioavailability. She’s being rechecked in 14 days and I believe will follow the standard re check protocol in the US.

    Maggie’s symptoms mainly are back leg muscle weekness that has gotten progressively worse. She also has consistently elevated cholesterol and alk phosphatase. Her tail hair is also very thinned out. She doesn’t really drink excessively (only about 1 cup water per day). No consistent potty accidents. A few but more my fault!

    I noticed her back legs trembling about 3 yrs ago but all her vets attributed it to arthritis. When I thought she started drinking more (but not excessively) excessively panting and just generally not being able to rest I suggested cushings. Still none of our local vets thought it was! Most recently when her back legs began to give out I saw the IM specialist at one of the largest hospitals in NYC and he took one look at her and said I agree! FINALLY!

    Most recently her

    Cholesterol is 515. (92-324 mg/dL)(goes up every time we test)
    Alk phosphatase is 368 (5-131 iu/l) (also increasing)

    Before testing we tried flax lignans and melatonin but I don’t think it had any effect.

    Any overall thoughts? Recommendations?

    EVERYONE’s input and advice is welcome and appreciated. I’m just so terrified of all this!!
    Last edited by Squirt's Mom; 08-31-2019 at 11:16 AM. Reason: to remove capital A's from contractions for ease of reading

  2. #2

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Hello,

    My dog has Cushing's as well and am considering treatment on Trilostane/Vetoryl. Do you know if yours is Pituitary based or Adrenal? My dog named Pookie is suspected as being Pituitary based and has had ACTH stimulation test, which didn't reflect cushings. The Low dose did reflect cushings, but not which one. The high dose is supposed to help differentiate the two, but Pookie fell in that population range that failed to suppress. Also had an MRI and Ultrasound. Pookie has had Cushing's for a year and am just now thinking of treating her, because Cushing's causes all sorts of problems. She started with Panting, than eating more, and now her back legs are giving out. I heard that thyroid problems could cause back leg weakness too, bec the nerve signal travels longer to get to the back legs or something like that. I'm not a doctor. I'm hearing so many different opinions on treating with western drugs. I have tried home remedies and am considering Trilostane now, bec I'm running out of options. If you do start, I would start with a low dose, bec that's what I'm going to do. Also having a steroid injection on hand may be advised for an Addisonian crisis.

  3. #3

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    The test results say the numbers are suggestive of pituitary based cushings and the IM specialist said the same.

    Hmmm I’m not certain her thyroid has ever been tested. I will ask

    It sounds like looking and Maggie have similar symptoms. What breed?

    I am against treating bc I’m so terrified of the drug but natural remedies didn’t work and the weakness is progressing. It’s heartbreakimg to watch especially bc she’s otherwise so healthy.

    Anyone have any thoughts on the dose? We have the first this am and I’m watching her like a hawk! Every little thing I automatically think addisons!! I’m driving myself crazy.

  4. #4

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Quote Originally Posted by Maggiemoo1 View Post
    The test results say the numbers are suggestive of pituitary based cushings and the IM specialist said the same.

    Hmmm I’m not certain her thyroid has ever been tested. I will ask

    It sounds like looking and Maggie have similar symptoms. What breed?

    I am against treating bc I’m so terrified of the drug but natural remedies didn’t work and the weakness is progressing. It’s heartbreakimg to watch especially bc she’s otherwise so healthy.

    Anyone have any thoughts on the dose? We have the first this am and I’m watching her like a hawk! Every little thing I automatically think addisons!! I’m driving myself crazy.
    I have a 15 1/2 year old Pekingese and understand your concern and emotions. If you look at my other post on here for "dog not eating and has cushings," you will see I have been through alot over the last month($9,000 in one month). Have you checked your dogs Kidney values? Cushings makes our dogs more prone to all sorts of things. Before all of my problems this past month, I was using HRM lignans, Melatonin, Adrenal Harmony Gold, and started using a little Tumeric and Ginkgo Biloba. This helped her back legs, but she is not using this now, bec her Kidneys were high and possibly was dealing with Pancreatitis. I would verify your dogs liver is ok too, because Pookie is on Advanced Denamrin, which is most likely from Cushings. The back leg weakness could be from a number of things, arthritis, back problems, nerve/thyroid problems, cushings, kidneys/ataxia, etc. It's exhausting financially, physically, and mentally to deal with Cushings. At least from my experience. I heard they changed the dosing on Vetoryl/Trilostane to a low dose, but you would have to confirm with your vet. After Pookie went through all this the past month, her panting has diminished, her appetite and water intake have gone done. I thought it was Addisons, but the vet doesn't think so. Currently, I am starting B12 shots today and Pookie is on Azodyl for her kidneys, Denamarin Advanced for her liver, and I add HMR lignans, Fishoil, Kidney Gold by PetWellBeing, VitC, 1/2 tablet of Pepcid, and 100mg of SubQ fluid 3 times a week to play it safe with her Kidneys. Pookie lost over 10% of her body weight this past month, but is eating and walking again. Her legs give out around the house, but can still run outside. I'm still not sure what is causing her leg weakness, but I will say that when I treated her with all the stuff mentioned above, it helped her leg weakness. I just had to stop, bec her Kidney values got high and I don't know if it was from Ginkgo or something else. Have you had an ultrasound done on her kidneys, liver, etc? If you haven't had an ultrasound done on her kidneys, I would highly advise it.

  5. #5
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    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Hi and welcome to you and Maggie!

    I understand very well how terrified this diagnosis can be. When I first heard that word in connection with my Squirt in 2007 I thought my world was ending. I spent countless hours scouring the internet trying to learn all I could about this disease and what I needed to do to help my Sweet Bebe deal with it. I rarely slept, had a hard time choking down food, and basically withdrew from everyone and everything except my computer and dog. I joined several other online forums and what were called "lists" back in those days hoping to find support and knowledge. They all failed on both points. One woman told me I might as well put a bullet in Squirt's head if I did what her vet was recommending which was to start treating with ligans and melatonin. By the time I made it to this forum I was a complete basket case. A dear friend here said I reminded her of a woman with her finger in a light socket - sputtering gibberish and hair standing on end. She kindly left out the parts about wild eyes and flying slobber! In short order the kind folk that were here had me calmed down and almost to the point where I could breath a bit so I could start to learn in earnest. They taught me then and continue to teach me to this day.

    My Squirt was 7 when she was first diagnosed and lived to be a little over 16. Cushing's is NOT a death sentence. So take a deep breath, roll your shoulders, shake your head, and try to start relaxing. When you can, take some time to start reading in the Helpful Resource section of the forum found here:

    https://www.k9cushings.com/forum/for...Cushing-s-Dogs

    Not everything you find there will apply to Maggie and her journey. It is rare for any 2 dogs to follow the same path with this disease but the more we know about Cushing's and it's treatments the better off our babies will be regardless of their own path.

    The starting dose for Vetoryl is 1mg/lb so at 4kg Maggie weighs 8.8kg (4 x 2.2 = 8.8). So the starting dose of 5mg is a great place to start for your baby girl. Her vet is supposed to follow up with an ACTH in two weeks after she starts. If all looks good then meaning her signs are no worse and the post number is good (between 1.45 - 5.4 ug/dl) then things stay the same. IF the post, or second number, is below 2.0 then the dose will be lowered. The dose is NEVER raised in the first 30 days because the cortisol will continue to fall on the starting dose. 30 days later another ACTH will be given. If the post number is within optimal range things will stay the same. Her vet should discuss what if any signs you are still seeing and if they are stronger or weakening. That second or post number can go as high as 9.1ug/dl if ALL signs are well controlled.

    The most common signs for Cushing's which indicate the cortisol is too high are:

    Increased thirst and urination (polydipsia and polyuria, respectively)
    Urinating at night or having accidents
    Increased hunger
    Increased panting
    Pot-bellied abdomen
    Obesity
    Fat pads on the neck and shoulders
    Loss of hair
    Lack of energy
    Muscle weakness
    Infertility
    Darkening of the skin
    Thin skin
    Bruising
    Hard, white scaly patches on the skin, elbows, etc. (associated with the disease calcinosis cutis)

    Not all pups have all these signs but we almost always see a huge appetite and thirst, excess peeing, panting and hair loss or failure of the hair to regrow after being shaved. A word of caution - our pups are not peeing so much because they are drinking so much. It is the exact opposite. They are GOING to pee and have to drink a lot to keep themselves hydrated. So never withhold water. Always make sure Maggie has plenty of fresh water so she doesn't dehydrate.

    Once treatment starts you also need to know the signs that the cortisol is too low. Those signs are:

    Nausea/vomiting
    loose stool/diarrhea
    lethargy
    loss of appetite

    If you see ANY of these signs do not give any more Vetoryl and contact her vet to let them know what you are seeing. The good thing about Vetoryl is that it has a very short life in the body and if the cortisol does go to low most of the time simply stopping treatment for a bit will set things right. Her vet may want to check the cortisol via an ACTH and run a test to look at electrolytes just to make sure she doesn't need a little help getting that cortisol up. Of the two sets of signs the set that indicates the cortisol is too LOW is the most crucial because low cortisol can be life threatening very quickly while high levels are not life threatening until they have been present a very long time. A lot of cush pups have had the disease for many years before they are diagnosed which proves the point that high cortisol is rarely life threatening.

    Well that should have your head spinning! But it is what you need to know today. Well most of what you need to know. You also need to know that you are not alone. You and Maggie are part of our little family here at K9C and we will walk every step of this journey with you. Never hesitate to ask questions, we will do our best to help you understand. If you simply need to chat, have at it! This thread will serve as a sort of diary of Maggie's journey so you can look back at any time to reread something someone else has said or to refresh yourself on something concerning her journey like when testing was done or doses changed. So come back to this thread and talk away!

    I am glad you found us and look forward to learning more as time passes!
    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

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    HI again!

    Thank you so much for the kind words! I am a bit calmer today.

    The vetoryl dose is 5 mg 2x daily so 10 mg in total. Is this too high? I am scheduled for her recheck in 13 days when they will do the stim test and check bloodwork.

    She gets regular bloodwork every 6 mos, had a liver panel in the beginning of aug and had her urine checked. The IM vet also did an ultrasound of her belly. Other than adrenals being slightly enlarged all looked ok.

    She is in great health besides the elevated alk phosphatase and cholesterol. All else is normal. That’s why this is so frustrating!!!

    We gave two doses of vetoryl yesterday and one today. So far all is ok!

  7. #7

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Oh my. Pookie (and his mom) have been through so much. I’m happy he’s doing better. I will keep him and you in my thoughts. I know what’s it’s like to be depleted physically mentally and financially over our little ones. Maggie has had cancer twice and a whole host of other bizarre health problems. Multiple surgeries. More than any animal or person should have to ever endure. She’s such a trooper!

    Would you consider treating with western meds if his kidneys and liver are strong enough? I NEVER did before but the hind leg weakness and falling were terrible. Just broke my heart.

    We’ve seen a neurologist multiple times, orthopedist and rehab specialists. All have agreed it could be from disc disease in her spine but it was the rehab vet(who is also an Eastern Chinese medicine specialist) who agreed with me a lost the cushings and thinks her weakness could be from it. I love this vet and trust her instincts. Maggie is being treated at the AMC in NYC. They have all sorts of specialists there and see cushings all the time so I feel like they know what they are doing but I’m still terrified!

  8. #8

    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    Quote Originally Posted by Maggiemoo1 View Post
    Oh my. Pookie (and his mom) have been through so much. I’m happy he’s doing better. I will keep him and you in my thoughts. I know what’s it’s like to be depleted physically mentally and financially over our little ones. Maggie has had cancer twice and a whole host of other bizarre health problems. Multiple surgeries. More than any animal or person should have to ever endure. She’s such a trooper!

    Would you consider treating with western meds if his kidneys and liver are strong enough? I NEVER did before but the hind leg weakness and falling were terrible. Just broke my heart.

    We’ve seen a neurologist multiple times, orthopedist and rehab specialists. All have agreed it could be from disc disease in her spine but it was the rehab vet(who is also an Eastern Chinese medicine specialist) who agreed with me a lost the cushings and thinks her weakness could be from it. I love this vet and trust her instincts. Maggie is being treated at the AMC in NYC. They have all sorts of specialists there and see cushings all the time so I feel like they know what they are doing but I’m still terrified!
    Pookie is a tomboy and her sister is a princess. Both half sisters. I'm the daddy... I am considering Trilostane treatment as well. Before this past month, I had an ACTH test done that doesn't show Cushings, but we know she has/had it from the low dose dex test. The strange thing is her clinical signs changing, but she does have back leg weakness and falls down sometimes. This is why I'm considering treatment, because she has been dealing with it for a year and its just gotten worse. I'm going to speak with my Vet on Wednesday to see if we can start. I'm afraid of causing Pookie harm, but many people have success with treatment. My Vet initially said not to treat unless Pookie is eating and drinking excessively. Pookie never did, but her hair loss, skin changes, back leg weakness, and now prone to infections makes me think she needs treatment. In the past, Pookie would pant alot, but now not. Very strange, because I'm wondering if her Adrenal glands have been overworked for so long that she may have had Adrenal fatigue/Addisons, but it doesn't appear to be the case. Her last ACTH base was 181 and post was 494. I don't know how this stuff converts and what is considered normal, but treatment is probably in Pookie's future, because I almost had to put her down recently and baby feed her with a syringe for 2 weeks. Just glad I was able to get a 0% intro Credit Card balance transfer done, because the stress from Finances just adds to the exhaustion.

  9. #9

    Unhappy Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    So sorry!! I thought pookie was a boy and you were a mom. I got it all wrong!

    Our regular vet said not to treat also because she’s not drinking and peeing excessively. Sad thing is I’d almost prefer that over the hind leg weakness lethargy and anxiety. She doesn’t want to walk 10 feet and when she does she’s panting so excessively. Her tail is almost bald. She’s always wandering about and restless. Some vets told me she had a touch of dementia but I knew it wasn’t that! Poor little thing. It took me almost 3 years to have someone see what I saw. I’m furious but the past is the past. I’m hopeful we will get this taken care of.

    I miss the walks and playfulness. I know she’s got a lot of life in her. I just hope this helps without causing damage.

    Don’t give up! Pookie and Maggie are in this together. Two troopers! And they are lucky to have us by their side every step of the way.

  10. #10
    Join Date
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    Default Re: 15 yr old Maltese just diagnosed. So overwhelmed! Vetoryl questions

    10mg is not too high for Maggie. Just keep an eye out for those signs I gave you that would indicate the cortisol is too low. That doesn't mean I am worried because I am not - her starting dose is good but we cush parent always need to keep an eye out for those signs once treatment starts. The schedule for the stim is perfect as well. You are off to a good start!
    "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.

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