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Alivia was recently diagnosed with Cushing's - Alivia has passed
I am so very sad that I need this site, but since I do, I'm thankful that I found it. My 13 year old, 18 pound, Jack Russell Terrier, Alivia, was recently diagnosed with an Adrenal tumor causing Cushing's. She had dental surgery for 2 abscessed teeth and at a follow up appointment I told her dentist she did not seem to be herself, so she did blood work. Many of the values were outside of normal ranges so I took her to her internist for further testing.
Alivia had an ultrasound which showed an adrenal mass and that side was approx. 4x the size of the other one. She also had a Dexamethasone Sup. Test that day. A week later she had the full Adrenal Function testing (sent to U. of Tenn.). Post ACTH reslts were Cortisol-249.0, Androstenedione-7.84, Estradiol-65.4 (one in the normal range!), Progesterone-2.55, 17 OH Progesterone-3.25 and Aldosterone-414.5. I cried for two days and also started researching options. Her internist said she could attempt surgery or treat her with Lysodren. Because of Alivia's prior health issues and age, I am terrified to attempt the surgery. When Ali was 7 years old, she had IMHA and almost died. At the time there were no specialists in Pittsburgh, so I drove her back and forth to Ohio State University, where she was in intensive care several times. Long story short, she made a miraculous recovery but has some residual health issues, which she is still monitored for. She takes amlodopine for elevated blood pressure and a low dose compounded aspirin daily to help prevent any clotting issues. Lysodren therapy also seems impossible because Ali's tumor is apparently causing her levels to fluctuate - sometimes her appetite and thirst are increased, sometimes they are normal for days and every so often she has no appetite for several hours to a full day. There is no way I could accurately judge the loading dosage. Plus, I have read that dogs on Lysodren have an average survival time of only 16 months? :(
Ali still seems to have a good quality of life, but tires easily. My goal is to keep her as comfortable as possible for as long as possible. I adore this little dog! My regular vet suggested Trilostane, but my understanding is that although it does tend to lower the cortisol, it increases all the other hormone levels and may even cause the tumor to grow more rapidly. I have started her on melatonin (3mg 2x a day) and Flax Hull (SDG) lignans (about 20 mg per day) and am considering asking her vet to prescribe Ketoconazole. She took this before for a skin problem with no bad effects - in fact, in hindsight, she had no Cushing's symptoms while on Ketoconazole. For added measure, I started giving her The Missing Link Canine Food supplement. I'm desperate.
Sorry this post is so long, but I was trying to give some background info. My question is: Does anyone here have any experience using the combination of Melatonin, Flax Hulls (SDG) Lignans and Ketoconazole for symptom tratment in a dog with an adrenal tumor? Any insight into ANY of this would be greatly appreciated.
Moderator's Note: I have moved your thread to the main discussion forum where other members who are dealing with both forms of Cushing's will see your post, & drop by to respond to your questions.
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Re: Alivia was recently diagnosed with Cushing's
Hi,
Welcome to you and Alivia. I think we are all sad when we first come here but once we learn and become knowledgeable and have support from others walking in the same shoes, it somehow gets easier. I know you don't think that now. I am sorry to hear about your pup, it is so hard to hear the Cushings diagnosis but we have members that have had surgery and/or have treated with Lysodren. The moderators will all be along soon with questions for you. They will want to know what your test results were, if you can post them it helps. The more information you can give, the better; how much Alivia weighs, etc.
My Zoe is on melatonin and lignans and it has brought her estradiol down to normal and brought some of the other hormones down alot.
Hold tight and we'll get things sorted out with tons of good advice. Our administrators and moderators are pretty darn smart:)
Take a deep breath and if you feel like reading, our reference section has a lot of information.
Welcome again and I am so glad you found us.
Hugs,
Addy
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Re: Alivia was recently diagnosed with Cushing's
Corky and I want to welcome you and Alivia.
Corky has a right adrenal gland tumor and is being treated with Trilostane since he is not a good candidate for an adrenalectomy due to his age and other health issues. He's been on Trilo for 1 1/2years. Some of his intermediate hormones are slightly elevated, but they have not caused any problems for Corky. His tumor has increased in size, but the last ultrasound he had showed that the tumor was the same size as his previous U/S. Corky will soon be 14years old, and he still enjoys his walks every morning.
I know cushings is very frightening, but with treatment, our furbabies do live to their expected life span, and they do have a good quality of life.
Terri
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Re: Alivia was recently diagnosed with Cushing's
I'm a newbie to the site so I can't really offer any advice (though I have read good things about melatonin and lignans).
I just wanted to let you know I'll be pulling for you and Alivia :)
Tammy
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Re: Alivia was recently diagnosed with Cushing's
Thanks to each of you for your optimistic responses. I so needed to hear something good...or at least not so bad. Alivia is my first dog. I got her quite by accident when she was 8 weeks old. I wasn't looking for a dog; didn't even know I wanted one. I went to look at a house for sale and she was there with her mom and 2 littermates. I didn't buy that house, but I fell in love with her immediately and made arrangements to pick her up as soon as she was old enough to leave her mother! That was 13 years ago and Ali has been such a sweetheart and an important part of my family. I got a second JRT almost 11 years ago, too. His name is Maxwell and fortunately he has always been very healthy.
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Re: Alivia was recently diagnosed with Cushing's
Welcome,
Addy is spot on. The knowledgeable folks here have a wealth of experience to pass on. They were right so many times when I questioned the information I was given by the professionals.
I don't have much to offer but I have a little experience with the Lysodren. Many pups here have gone on for several years on Lyso and my Snoop has only gotten better, when she probably would not be here without it. According to Dr. Oliver at UT it will also lower your hormones/intermediates.
I researched the Melatonin, Lignans and Ketoconazole at first also because my Snoopie got diagnoised with pituitary cushings, after her gall blatter and spleen were removed. Her elevated hormones reaked havoc on her organs! I was also concerned about the Lysodren being too hard on already delicate system. Her food and water habits were fluctuating also. (They must feel awful with elevated hormones. She is more constant now.) Unfortunately, her Estradiol was sky high along with everything else, so we had no choice. We tried the HMR lignans and melatonin but, she needed the Lysodren as well because she was so high.
I was told lysodren is a selective drug which only targets the outer cortex of the adrenal glands, blocking the the cortisol. That made me feel a little better...so we went ahead. When we got loaded it wasn't so much the water and other indicators but her attitude. I expected her to feel bad when I started loading her, as it is a chemotherapy drug. However, she actually started acting like her old self as her cortisol got into the normal range. As she got closer to the 1-5 ug/dl for loaded lysodren it was then I noticed that she became less active and was acting a little lethargic and less her old self. Thats how I knew she was loaded.
We had a few ups and downs as she had to be loaded twice as she didn't hold and we have had a hard time with her maintaince dosage. None of this was due to the Lyso...just learning experiences...and the sound advise of the group got us through. However, because of all of her other issues and in the long run not being able to judge her dosage the traditional way I have been able to tell easly by just her attitude and activity.
Sorry for the lengthy post but what I wanted convey was don't rule out the Lysodren just yet because you think you might not be able to judge if Alivia is loaded or you feel it may shorten her life. Lots of members have had great results with just a maintaince lysodren dose, lignans and melatonin for Adrenal Cushings.
The proper use of lysodren doesn't shorten or put an expiration date on our pups...Cortisol and Intermediates do!
Big Hugs to you and Ali,
Rene & Snoopie
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Re: Alivia was recently diagnosed with Cushing's
Thanks, Rene. No need to apologize for a long post - I GREATLY appreciate everyone's insight and experience with this. I am fortunate to have good vets, but their opinions can vary and I really need to hear actual experiences from people who have been through this with their pets and which treatments worked and which ones not so much. I thought I had ruled out Lysodren, but you have given me reason to reconsider. What about Trilostane v. Lysodren for a dog with an adrenal tumor? Anyone have any opinions on this?
Thanks again, Rene. Happy Easter to you and Snoopie!
Grateful for advice,
Mary Beth and my sweet Alivia
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Re: Alivia was recently diagnosed with Cushing's
I really do feel for you....Maya was diagnosed just a few days ago, so any advice from me would be like the blind leading the blind! I can offer hugs and moral support. Maya has been put on Vetoryl which is Trilostane. She has started off on a very low dose to see how she reacts to it. I suppose that it's a case of all dogs are different, so it's trial and error. We will just have to watch them like a hawk and have frequent follow up tests done to see if they are coping with the drugs ect.... Although it's very difficult, I am trying not to obsess about it cos it's not good for either of us.
Hugs from leah and Maya
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Re: Alivia was recently diagnosed with Cushing's
Hi, Leah,
Sorry to hear you are also going through the same thing with Maya. What kind of dog is she? How old? Is her Cushing's pituitary or does she have an adrenal tumor, like Alivia?
We may not be able to offer any advice at this point, but since they were both diagnosed about the same time, we certainly can offer each other much need moral support!
Please keep in touch. I hope Maya's treatment goes well!
Warm thoughts,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Welcome from Jodi and Misty.. I cant offer much in knowledge. Misty just had her LDDS test last week. I will know results on Monday. Hoping for the best for all of our furbabies!
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Re: Alivia was recently diagnosed with Cushing's
Quote:
Originally Posted by
MBK
Hi, Leah,
Sorry to hear you are also going through the same thing with Maya. What kind of dog is she? How old? Is her Cushing's pituitary or does she have an adrenal tumor, like Alivia?
We may not be able to offer any advice at this point, but since they were both diagnosed about the same time, we certainly can offer each other much need moral support!
Please keep in touch. I hope Maya's treatment goes well!
Warm thoughts,
Mary Beth and Alivia
Hi Mary Beth, Maya is a cross breed ( a mutt, I guess you could call her) She was 12 on the 1st of April. We think that she has pituitary type Cushings as no tumours were found on the ultrasound scan. Her adrenal glands were on the large side, but still within the normal range. One was slightly bigger than the other.
I'm sure you'll find all the help and support you need here, they are a great bunch!:)
Best wishes to you and your little babe
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Re: Alivia was recently diagnosed with Cushing's
Quote:
Originally Posted by
MBK
What about Trilostane v. Lysodren for a dog with an adrenal tumor? Anyone have any opinions on this?
Grateful for advice,
Mary Beth and my sweet Alivia
I think you will find this article interesting:
Cushing's disease and other adrenal gland disorders (Q&A with Dr. E.C. Feldman).
Dr. Edward C. Feldman is a renown Cushing's expert, also this is the Editor's note:
Quote:
Edward C. Feldman, DVM, Dipl. ACVIM, is the chair of the Department of Medicine and Epidemiology at the University of California-Davis School of Veterinary Medicine. He is a co-founder and former president of the Society of Comparative Endocrinology, a special interest group open to all veterinarians, and is a co-author of the Textbook of Veterinary Internal Medicine with Dr. Stephen Ettinger and Canine and Feline Endocrinology and Reproduction with Dr. Richard Nelson.
When deciding to treat with Lysodren/Mitotane or Trilostane/Vetoryl, IMO, either medication is safe when monitored appropriately and with owner observation and each med can have similar adverse effects. So "owner observation" is always a crucial component of treatment.
Each has it's pros and cons, they work differently, they are both safe when monitored appropriately, yet they both can have the same and serious risks and adverse effects.
One or the other may work better for an individual dog.
Another important consideration is the degree of experience your vet has with whatever treatment he/she chooses. Cushing's requires a good partnership with one's vet.
Love and hugs,
Lori
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth,
This was also helpful to me when I first started out...if you haven't already seen it.
http://www.vet.utk.edu/diagnostic/en.../treatment.php
You were correct in your post that the trilo may elevate the intermediates. I have learned that the lyso will lower them. I had
e-mail conversations with Dr. O at UT re: this subject. You can e-mail him with general questions. He is very good about getting back to you.
joliver@utk.edu
Take Care,
Rene & Snoopie
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth,
Choosing treatment can be agonizing for us so don't feel you are all alone in that regard. We are the ones administering the drug to our pups so we can find it overwhelming.
Knowledge will make you feel more comfortable with your decision.
My dear friend Sonja, Apollo's mom has always given me sage advice. "Go with your gut". I pass that advice on to you:)
Hugs,
Addy
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Re: Alivia was recently diagnosed with Cushing's
Thanks, Addy. Just when I think I am leaning towards one treatment, I change my mind.
I'll post Alivia's test results and if anyone has any opinions, I'd love to hear them. Alivia is a spayed female Jack Russell Terrier, 13 years old and 18 pounds.
LDDS Results:
Cortisol Pre - 7.1 ug/dl
Cortisol 2 - 0.9 ug/dl
Cortisol 3 - <0.7 ug/dl
I think these results were all in normal limits, but I am having a hard time reading the reference range information.
Ultrasound
I haven't received a copy of the report but was told there was a mass on one adrenal gland and that it was about 4x larger than the other side.
Adrenal Panel (U of Tenn)
Baseline / Result
Cortisol ng/ml 115.8* / 249.0*
Androstenedione ng/ml 3.90* / 7.84*
Estradiol pg/ml 68.8 / 65.4
Progesterine ng/ml 1.09* / 2.55*
17 OH Progesterine ng/ml 0.91* / 3.25*
Aldosterone pg/ml 222.1* / 414.5*
"These results indicate presence of increased adrenal activity. (severe)"
Blood tests (abnormal results only)
Result / Ref Range
Glucose 129 H / 75-125
Cholesterol 351 H / 120-310
ALP 203 H / 0-140
Amylase 2093 H / 100-1500
Lipase 436 H / 0-225
Triglycerides 238 H / 30-120
Sodium 104 L / 141-152
Potassium 2.8 L / 3.8-5.3
Chloride 74 L / 102-120
WBC 17.5 H / 6.0-17.0
GRAN 13.9 H / 3.5-12.0
HCT 35.1 L / 37.0-55.0
PLT 596 H / 200-500
Not sure if there is any significance to this, but handwritten on the blood results it says "Serum-cloudy/white"
So, how bad is all of this??
Terri, since your dog is about the same age as Ali and also has an adrenal tumor, could you tell me why you chose Trilostane over Lysodren? It sounds like you are having good results?
Sorry for such a long post, but I am at a complete loss as to what to do. It's 1:30 A.M. and I get up for work at 5:30, but I can't sleep. The only thing I have ruled out completely is surgery - that terrifies me due to her age and prior history of IMHA. The more I read, the more confused I get....wish I had a crystal ball.
Thanks all,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
One last test result:
Urine Protein/Creatinine Ratio 4.5 / Ref Range <=0.5
Thanks again,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth,
Corky has been doing good on the Trilostane. Originally, when Corky was first diagnosed with cushings over two years ago, his vet was putting him on Lysodren, which really scared me. Due to two UTIs, Corky couldn't start treatment due to the antibiotics he was taking. In the imeantime, his symptoms went into remission for seven months. When his symptoms started appearing again, his IMS is the one that recommended that we use Trilo with Corky instead of Lyso. She felt that it would be easier on Corky because of his other medical issues. He hasn't had any problems with it. His dosage has had to be adjusted, but that is to be expected. She started him at the low end with 1mg per pound.
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Re: Alivia was recently diagnosed with Cushing's
Hopefully Deb will come by and look at your test results for your blood work. Glynda and others can make sense of your UTK panel in the mean time.
Don't forget you can always switch between Lysodren and Trilostane as long as you do a 4-6 week wash out period if you have ruled out surgery. Boy, I know that "change your mind" every day!!!! I still do it even with food:rolleyes:
Terri will stop by too to discuss Corky and Trilostane or you can read her thread "Little One".
You have some time to decide.
Hugs,
Addy
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Re: Alivia was recently diagnosed with Cushing's
Quote:
Originally Posted by
MBK
One last test result:
Urine Protein/Creatinine Ratio 4.5 / Ref Range <=0.5
Thanks again,
Mary Beth and Alivia
Many dogs that have Cushing's do have protein-loss but also blood pressure that is elevated or not controlled properly can cause the the protein-loss to increase. Has Alivia's blood pressure been checked recently, as I seen from your prior post that she does have elevated blood pressure which amlodipine is being given to control.
My boy, Harley, was on amlodipine for a while for his elevated blood pressure but this medicine ceased to control his high blood pressure, we had to add benazepril along with the amlodipine to bring his elevated blood pressure down to the normal ranges.
Love and hugs,
Lori
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Re: Alivia was recently diagnosed with Cushing's
Hi, Addy and Lori. Thanks for the replies.
Addy - So funny you should mention the changes in food!! I spend so much time in the pet stores reading labels. I won't give my dogs anything not made in the U.S. and since I have a hard time committing to any one food, I vary the (premium) brands I give them. Fortunately neither of them have sensitive stomachs and actually seem to enjoy the variety! I often bake them homemade treats because I feel better knowing exactly what they are eating.
Lori - Alivia gets her blood pressure checked every couple of months and the Amlodopine seems to be keeping it in check so far. The protein in her urine is due to glomerulonephritis, a residual from when she was 7 years old and had IMHA. So her kidney function has been a bit compromised for awhile.
Currently, I am leaning towards starting Trilostane, but still am very undecided so any opinions are welcome!
Thanks,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
One needs to be cautious when using Trilostane/Vetoryl or Lysodren/Mitotane in a dog that has renal insufficiency. I would ask your vet/IMS about this.
Love and hugs,
Lori
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth and a belated welcome to you and Alivia.
I have looked at the abnormal blood values you posted and I'm going to ask Debbie, our resident expert, to take a look at everything. Debbie has 30+ years experience as a lab technician so I'd like her to comment on a lot of the abnormalities that we don't normally see with cushing's.
You mention that Alivia had IMHA when she was 7 years old. Most dogs with this condition don't recover and are on life long medications, usually prednisone. Did your vet determine what underlying condition triggered the IMHA six years ago? Was Alivia on long term prednisone? Is she currently receiving any medications to suppress the immune system? Can you also post the values for creatinine and BUN. If the IMHA caused kidney damage, I would think there would be some abnormal kidney values in addition to protein in the urine.
The ultrasound findings indicate an adrenal mass on one of the adrenal glands. Before I go into my very layman's opinion, can you please confirm that the other adrenal gland was shrunken or atrophied? Sorry to answer your questions with more questions but the waters get murky for me when a dog has an underlying condition like IMHA.
Glynda
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Re: Alivia was recently diagnosed with Cushing's
Hi, Glynda and thank you,
You are correct that most dogs don't recover from IMHA. There is an 80% mortality rate. I had no clue Ali was even sick until she had a siezure. Fortunately, I was at home and rushed her to her regular vet's. Her PCV was 12 (normal is around 50) and he immediately made the diagnosis. At the time, the best place to go was OSU, so we made the 4 hour trip - many times. Alivia was in intensive care there several times. She received a couple of blood transfusions, was treated with Prednisone, Imuran and Heparin injections for awhile. High doses of Prednisone are the first line of treatment for IMHA, but Ali did not do well with that. As soon as she was stable and her PCV was higher, the prednisone was stopped. It was ironic that the Prednisone saved her life, but also seemed to be killing her with side effects from the drug! While she was critical, she also developed Protein Losing Nephropathy. She defied the odds, surprised her doctors (they said she did things they could not medically explain) and recovered for the most part. Her regular vet here is wonderful and would draw blood (sometimes twice a week!) and ship it to OSU so that the results were always run by OSU and would be more consistent. Then OSU would call me with any medication adjustments or changes. I think she survived because her regular vet worked with OSU, allowing them to direct her care, and we all worked as a team. Plus, Alivia had to have a strong will to live and I wasn't about to let her die! ;)
Alivia has residuals of high blood pressure, treated with Amlodopine and usually has some protein in her urine (although this recent result was higher than her usual) and her "normal" PCV is now a bit lower than most dogs. She is not on any immune suppressants and is never prescribed Prednisone because of not handling it well. What caused the IMHA? They could never say for certain but she had routine immunizations about one month prior and that may have triggered it. To this day, she is not permitted to have any immunizations, boosters, etc. Not even for rabies.
She has been monitored pretty closely since the IMHA. If I even think she is a little pale or lethargic, I take her for blood testing. She's remained pretty consistant.
The additional results you requested on 3/19:
BUN 24.4 (9.0-29.0)
Creatinine 1.0 (0.4-1.4)
On 3/24 (different vet):
Creatinine 1.0 (0.5-1.6)
BUN/Creatinine Ratio 21 (4-27)
Her regular vet who has monitored Alivia since prior to the IMHA said today in an e-mail "Alivia doesn't seem to have kidney or liver problems". Which confuses me based on things her IMS (who is difficult to talk to) has said in the past. Since her IMHA days I have always requested copies of all of Ali's test results and I did request everything from the last bunch but they did not include an ultrasound report. Unfortunately, all I know is what the IMS told me on the phone, that the one adrenal gland was about 4x the size of the other. I will call them again tomorrow and ask for the report.
Ali's regular vet conferred with an internist friend of his and has recommended Trilostane as he believes that would have the least chance of negative effects. I e-mailed Dr. Oliver last night and his repsonse today seemed to favor surgery but he admitted that would be risky (I will NOT take that chance) and his other suggestion was Melatonin, Lignans and a maintenance only dosage of Lysodren WITHOUT the loading dosage. So, of course I am even more confused!
Thank you again for your time. I really appreciate any insight you can give me.
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Glynda -
The first blood testing results I posted were from 3/19 and were drawn by Alivia's dentist (a whole different story!) because I said she was not acting like herself. Since there were so many things out of the normal range, I took her to her IMS as soon as I could get her in, 3/24.
Looking at the 3/24 results, the reference ranges are different and these don't seem nearly as bad! The only abnormal ones are:
Alk Phosphatase 205 (5-131)
Amylase 1393 (290-1125)
Hematocrit 34.4 (36-60) This is normal for Ali.
WBC 17.4 (4.0-15.5) She was getting over an abcessed tooth with severe infection.
Platelet Count 563 (170-400)
Neutrophils 80 (60-77)
Lymphocytes 11 (12-30)
Absolute Neutrophils 13920 (2060-10600)
Absolute Monocytes 870 (0-840)
Actually nothing is unusual for Alivia except the ALP and Amylase and these are higher than blood testing she had on 2/9 (pre-surgical for the abcess). Now I see why OSU wanted all the blood testing done at the same place!!
You are probably ready to kick me off of here because of these long posts! I'm so sorry. I just want to be sure you have as much detail as possible.
Thanks so much,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Quote:
Melatonin, Lignans and a maintenance only dosage of Lysodren WITHOUT the loading dosage. So, of course I am even more confused!
I don't want to confuse you any more than you feel you are. I have this treatment choice as an option for my Zoe. She has colitis and takes metronidazole to control it. I have searched everywhere to find another doctor who might think this was truly an option for us, eveyone tells me, including my internist, it doesn't work, yet Dr. Oliver does believe it is an option. It is confusing, I totally agree.
Hugs,
Addy
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth,
When I mentioned it earlier it, was Dr. O that told me that the Maintenance lyso could be used along with the lignans and melatonin without loading. My IMS confirmed this. However, Snoops cortisol was too high (104.8/426.4 ng/ml) and she had to be loaded. I believe Ali's is much lower and according to this theory, you could try this. I believe the course was to administer for three months and retest the cortisol and intermediates.
I was really hoping after I posted that, that someone who has actually tried this succefully would come along and post their experience. It did not work for Addy but I am curious what Zoe's Cortisol was when they started? Supposedly, it is only an option for cortisol that is not really high.
I am also skeptical and would love to know if this actually worked for anyone and what the cortisol was before and after the 3 months if it did...anyone?
Your doing a great job with your research...hang in there. Any decision is a good decision!
Rene and Snoopie
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Re: Alivia was recently diagnosed with Cushing's
Dear Mary Beth and Alivia
Welcome from Sonja and Apollo.
Apollo is 12.5 years has the pituitary cushing and is on Trilostane, and does have the elevated hormone readings but I am still trying to figure it out. He has done well on the Trilostane.
We are hear for you and will support and guide you along.
Hugs Sonja and Apollo
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Re: Alivia was recently diagnosed with Cushing's
Quote:
was really hoping after I posted that, that someone who has actually tried this succefully would come along and post their experience. It did not work for Addy but I am curious what Zoe's Cortisol was when they started? Supposedly, it is only an option for cortisol that is not really high.
Zoe 's cortisol was 40 last UTK panel. I have not tried this option so I am not stating it did not work for me. I said it was an option for me but I keep being told by others that it does not work including my IMS. I just posted on my thread what Dr. Mark Peterson told me about. He is a highly respected published specialist. I have been trying to research this option for 3 months.
My only point was, I too have been told it is an option for my dog but noone seems to think it works for a dog with increased cortisol except for Dr. Oliver. I would love to believe it could work.:)
Hugs,
Addy
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Re: Alivia was recently diagnosed with Cushing's
Thanks Addy,
I misread...I thought u tried skipping the loading phase and it failed. I would love to believe it works, also. But, I am like Mary Beth...I want to hear from the group on real life experiences!
Mary Beth, what I do know that works if you decide on the Lyso, break down your maintenance dose in three or four doses a week and give with food. Its easier on them and does not give the adrenals a chance to regenerate in between a single weekly dose. The food helps more of the drug to be absorbed properly by the adrenals. I learned this because Snoop was having a hard time rebounding on her cortisol and these little things had helped her to hold.
Rene & Snoop
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Re: Alivia was recently diagnosed with Cushing's
Mary Beth, I believe that Leslie's Squirt has been on maintenance lysodren dosing for a couple of months. I don't know if she has had any repeat testing done, but Leslie has been reporting that Squirt's symptoms have show great improvement. Squirt had been on only melatonin + lignans the past couple of years.
The thing about this disease is that the great majority of dogs who demonstrate elevated cortisol will also have one or more intermediates elevated. Once you bring the cortisol within range, this will also resolve the intermediates in a large majority of cases. There is a lot of debate among the professional community as to the significance of elevated intermediates & using trilostane, so it's kind of hard for us to weigh in on it when even the experts don't have a consensus opinion. I can tell you this that with the number of dogs in this group on trilostane, keeping in mind that not all of them have had a UTK panel done, we see very few that have problems with intermediates causing increased symptoms with trilo.
Personally, when my Harley was diagnosed my GP vet used a UTK panel to make the diagnosis. I took him to my former IMS for confirmation. All she did was an ultrasound, & the US along with the UTK panel made the diagnosis. Harley had some pretty spectacular elevations clear across the board on the UTK panel, & at that point in time, the IMS would not even consider putting him on trilostane. This was 3 years ago, so her opinion may have changed. I had a serious disagreement with her over how she was handling Harley's care, & basically fired her, so I can't say what she's doing, now. My GP managed Harley's care, & we used lysodren. I had successfully treated one boy with lyso for nearly 8 years, so it was the drug I was familiar with. My GP kind of suggested trilostane, but I think Harley would have been his "guinea pig" first trilo pup. I was not in favor of that. Interesting point, I asked my GP about a month ago, if he was using trilo with any of his Cushing's patients, his response was not a single one. My GP vet has tons of experience with Cushing's so that tells me something.
Debbie
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Re: Alivia was recently diagnosed with Cushing's
I started Alivia on Melatonin and Lignans last week. I figured that wouldn't hurt no matter what option I end up going with.
Rene, are you saying that Ali's cortisol level at 115.8/249.0 ng/ml is not extremely high as cortisol levels go with Cushing's? If so, I am going to take that as a tiny glimmer of good news.
This is such a confusing desease and it is even more complicated when well known endocrinologists like Dr. Peterson and Dr. Oliver have such completely different opinions. I read an article written by Dr. Peterson where he says suppresion tests (LDDS) are best for diagnosing hyperfunction and the ACTH is best only when the adrenal glands have been suppressed (with medications) or destroyed (Addison's). If my IMS had followed that protcol, Alivia would not have a Cushing's diagnosis because her LDDS was negative for Cushing's.
Maybe Dr. Peterson and Dr. Oliver's opinions cancel each others out and we need a third knowledgeable Endocrinologist's opinion! :confused:
I appreciate the dialogue here and any opinions/comments/suggestions are welcomed!
Thanks,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
My Dear Mary Beth,
The only thing I can offer you is my experience with Snoop. Her numbers were very high and she was very very sick. Her ALKP was over 2000 and unknown because that was the cut off and upper end of the chart. She lost her gall bladder (described as "mush") and her spleen due to these numbers. She also had all the outward symptoms, poor coat, pot belly, rear end weakness, premature aging, ect. So in comparison, your numbers look great to me!
Cortisol ng/ml 104.8 baseline 426.4 post
Androstenedione ng/ml 2.44 baseline 10.0 post
Estradiol pg/ml 125.1 baseline 125.7 post
Progesterone ng/ml 0.97 post 20.8
17 OH Progesterrone ng/ml 0.99 post 26.8
Aldosterone pg/ml 30.5 post 152.9
As sick as she was she is an amazing girl and bounced back immediately after her surgery at 12 years of age! In fact a few weeks later, when having her stitches removed she open herinated her intestines out because the surgery site had not healed properly and endured yet another surgery to replace them. She bounced back again. They are truly amazing creatures.
Additionally, since getting her help and starting medication (surgery was not an option/pitutary cushings), she is acting like her old self. Something I thought I would never see again. Truely, the root of her problems were her elevated numbers across the board!
She still looks like a cushing dog with the poor coat and such, but with time I am hopeful she will continue to improve.
As far as the doc's opinions...they are all highly educated professionals with varying experiences. Some folks have a tendancy to shop around until they find one that will tell them what they want to hear!
Just keep doing your research. Sit with it. And do what YOU BELIEVE is best for both you and Ali. There is no wrong decision.
There is nothing but hope! The folks here will get you through this!
Take a time out and watch a movie together tonite!
Hugs,
Rene & Snoop
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Re: Alivia was recently diagnosed with Cushing's
Thank you, Rene, for the kind words and encouragement! I am trying to do as you suggested, to slow down and take more time to do the things Alivia likes to do. And, to treasure the time I have left with my old friend. As they say, to be the kind of person my dog thinks I am.
It sounds like your little girl Snoop has been through a lot! They are amazing, aren't they? Alivia surprised her doctors once before and survived another serious illness (IMHA) when they didn't expect her to live. I keep telling myself we'll get through this one, too.
Has anyone ever heard anything about a product called Supraglan, sold by www.petwellbeing.com? It has very good ratings and rave reviews (if they are legitimate). I try to keep an open mind and do believe that there are some natural holistic/herbal things that can be beneficial. Unfortunately, there are probably many more that are just false hope.
Alivia has had Cushing's symptoms off and on for at least 2 years before her recent diagnosis. This is the longest she has been symptomatic, though. Something just occurred to me! Alivia had dental surgery, with anesthesia, on 2/14 for two abcessed molars. It was shortly after that when her symptoms returned. In fact, it was her dentist who did the initial blood testing and an abdominal x-ray because I had told her Ali wasn't her normal self (her IMS then made the Cushing's diagnosis after more testing). Is it possible that the infection, surgical trauma, anesthesia and/or 5 weeks of antibitotics could have caused her relapse? Could that have caused a change in her adrenal tumor?
I truly appreciate everyone's comments and opinions here. It is an ENORMOUS help.
Keeping each of you in my thoughts and wishing all of your babies good test results, better health and long belly rubs,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Mary Beth, Supraglan & Cushex, 2 of the most widely circulated products for Cushing's on the net, are pure & simple "snakeoil". They really dont' work. Glynda, one of our administrators has written to one of these companies requesting scientific proof, such as ACTH testing to confirm that cortisol is being lowered by these products, they could not provide any documentation. Believe me, if there were any naturopathic cures that worked, we would all have our pups using them in a flash.
Debbie
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Re: Alivia was recently diagnosed with Cushing's
Hi Mary Beth,
Here is the response I got from Pet Well Being regarding Supragland's effectiveness. It's pretty outrageous that these people get away with borderline fraud. They have absolutely nothing to support their claims but I do give them credit for being honest about being shameless.
Quote:
Hi Glynda,
Unfortunately no scientific tests or trials have been conducted on this product to support the claims you inquired below about.
The items we offer on
www.petwellbeing.com are not drugs or medicines, but rather all natural herbal alternatives. Please be aware that these products are not guaranteed to cure or treat all animals, as each individual animal and their situation's are different.
PetWellbeing Customer Service
1-877-633-2401
http://www.petwellbeing.com
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Re: Alivia was recently diagnosed with Cushing's
Thanks, Debbie and Glynda. I thought it sounded too good to be true, but, I was hoping!
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
Quote:
Alivia's GP vet worked closely with OSU and me and truly helped to save her life when she had IMHA. My point is we developed a great relationship then and I know he cares about Ali. Anyway, he did his own research and talked to an IMS friend of his (not Ali's regular IMS). He told me he will support whatever decision I make and wanted what was best for Alivia and me, but that his recommendation was Trilostane
.
Mary Beth,
Just my opinion but sounds to me like you have a pretty special vet and that is the most important part, I think. If he says Trilostane, I say, go for it:D:D
Thank you for posting on my thread. I appreciate your input.
Hugs,
Addy
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Re: Alivia recently diagnosed w/Cushing's - Trilostane?
Dear Addy,
Yes, Alivia's GP vet is very special. I think he has a vested interest in Alivia, since he was such an important part in saving her life. Everyone in his office knows and loves Ali. Any time I call for any concern, as soon as I say "Alivia", they tell me to bring her right in. He has been a vet for a long time, but really seems to keep up with the latest research and seems to enjoy a challenge. The fact that I can walk to his office and be there in about 2 minutes is an added bonus!
Her IMS is very knowledgeable, and may even be more experienced with Cushing's (although, maybe not since she is much younger), but she is not so easy to work with. I think she likes to be fully in charge and doesn't like when I do my own research. Her examinations always take place in another room, away from me, which I have never been comfortable with. Her recommendation was surgery and I said I was not willing to go that route. When I said I was afraid of Lysodren (because of Ali's fluctuating appetite), she said the third option was to do nothing. I called her the very next day to ask a question about Ketoconazale (Ali had been on it before for a skin problem) - that was two weeks ago and she STILL has not returned the call!
I see from everyone's posts here that the relationship with the vet seems to play a large part in the success of the treatment. I know her GP vet has reviewed Ali's records, knows her full history, has researched all options, and has talked to at least one colleague about her. He is always willing to listen to me and understands my concerns. I respect and value his opinion. That is probably half the battle.
Thanks to all of you for listening, commenting, offering support and helping me arrive at my decision (I think!). :cool: Each of you are quickly becoming very important to me.
Much appreciation,
Mary Beth and Alivia
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Re: Alivia was recently diagnosed with Cushing's
A belated welcome from me Mary Beth and Alivia.
You are truly lucky to have a fantastic vet. You are absolutely right with regards to the relationship with the vet being so important with treatment for cushings. I believe that in reality ... the vet only prescribes the meds and does the check-up and the tests but the owner is in fact the person who technically treats the dog ie you are the one there 24/7 who has to monitor the dog and ensure that if you see symptoms of rising cortisol or those of too " low" you then get the dog to the vet.
Our vet was not overly experienced in cushings and was extremely dogmatic and would not listen to me for some time. Even though we live in a small city we do not have a lot of options and the only IMS clinic here in NZ is SO expensive. But as time went by she realised that in fact I have done a lot of research and that my suggestions were actually pretty much where we should go. This was due to the fact what I said before ... you are the one that sees the dog everyday. But Sabre did have his ups and downs.
Sabre has now passed away but we have another Vizsla who was diagnosed with Steriod Responsive Meningitis and IMHA when he was 6 months old. So I can truly relate to Alivia's battle with IMHA. Our dear ... but very naughty ... Flynn just came off his meds this week after being on them for 16 months.
All the best
Angela and Flynn
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Re: Alivia was recently diagnosed with Cushing's
Hello Angela and thanks for the welcoming post. This site has been such a saving grace. I am very sorry for the loss of your beloved Sabre. My heart aches for anyone that has gone through that.
I am so sorry to hear that your new guy is also having serious health issues. I am new to Cushing's, but I can definitley understand what you must have gone through these past 16 months. The first months are especially scary with IMHA, so hopefully, the worst is way behind you. Alivia was on various meds - Prednisone, Imuran, Heparin to name a few. At one time I had to give her Heparin injections twice a day and she was such a trooper! Flynn must be doing well to be off medications now, so that is very good to hear!
After going through IMHA and PLN with Alivia, you are absolutely right about getting to know their symptoms and when there is the least bit of change. I watch Ali like a hawk. I still continue to check her gums on a regular basis to make sure she is not pale. Her PCV remains a little lower than "normal", but it has not dropped in a VERY long time. My GP vet trusts me when I say there has been any change in her and I realize how important that is.
I hope Flynn's health continues to improve from here on out! They are with us such a short time that it just doesn't seem fair that any of their time is spent being sick!
Thanks again for your post.
Mary Beth and Alivia