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
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
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
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
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
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
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
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
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
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