Tipper - adrenal tumor/breathing issues

Hi and thanks for posting the stim test results. Are you sure the extra blood draw was done for a full blood chemistry or was it to check the electrolytes, which should be done with every acth stim test? If it was done for a full blood chemistry, in my opinion, it's premature and a waste of money. It makes more sense to get Tipper's cortisol within the therapeutic range of 1.4 to 5.5, or as high 9.1 if all symptoms have resolved, before doing another full blood pane. Since Tipper's post stimulated cortisol is too high, you would have to expect that some, if not all, blood abnormalities are still abnormal. Did your vet mention what the next step is to get Tipper's cortisol to an acceptable level?

With reference to the tremoring, I think I mentioned previously that we've had a lot of members who report that their dogs developed tremors after starting Vetoryl treatment. The majority reported that tremors were noticed at rest or during sleep. I don't recall that any of these dogs were experiencing joint pain during sleep and not during waking moments. Does Tipper act arthritic during the day? i.e. any struggling or apparent pain in trying to stand from laying or sitting position? Any noticable stiffness while walking? If no to these questions, I believe that it is highly unlikely that the tremors you are seeing being caused by joint pain. Has your vet done xrays and/or manipulated Tipper to confirm or rule out arthritis?

Glynda

Glynda:
I am confused- the Vet told me her cortisol is at a good level now. The test says anywhere between 6-18 is normal. What am I goofing up here on? Tipper does have some slight displaysia in her hips as of years ago. Since she is 11 she could have arthritis. I don't think they really know what causes these tremors, and they are guessing at best. Thanks for your help in advance, as you really have me going about this cortisol now. The reason he does the Early Detection Profile is to see if there are any problems with her liver, kidneys etc. so it would be caught early. He also does urine testing at the same time.

Quote:

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...the Vet told me her cortisol is at a good level now. The test says anywhere between 6-18 is normal.

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This is something we see often, unfortunately - vets who don't learn how to read these tests and therefore base doses on incorrect info. That range, 6-18, is normal for an UNTREATED dog - a dog that does not have Cushing's and/or is not on treatment. Once diagnosed and treatment is started, that range changes depending on which drug is being used.

The post range for a Trilo pup has to be between those values Glynda gave. If the post is higher than 5.5, the dose is probably not right. IF all signs are controlled, the post can go up to 9.1 - but no higher.

Hope that helps you understand a bit better.

Hugs,
Leslie and the gang

Leslie:
Not knowing what to do, I called Dechra, and they said that Tipper is where she should be for now. They said she has steadily been coming down, and they don't want to rush it. They told me since her clinical symptoms have mostly disappeared that is what we need to pay attention to now. They told me they do not want her to get to the lower end of those numbers, as then she can have problems going too low. They said just hang in there and see if her number continues to drop on it's own. If she has no more symptoms, and she is at 11 and Glynda says 9 is ok she is not too far away. Does everyone agree with this or not?? I would appreciate everyones input, and Glynda especially what do you think? I don't want to rock the boat and make her worse off than she is. She has been doing well like this. Please tell me what you think as this makes me nervous. Thank you Leslie for explaining this to me I did not know all this and I appreciate it. I hope to God I am doing the right thing here. Thank you all for you help.

Hi Patti,

I was unable to find any prior acth stim tests so I had nothing to compare this latest stim to. Tipper has been on 10mg am and pm since August 25 so it is possible that her cortisol could continue to drop. We've seen some dogs whose cortisol continued to drop well into the 60 day mark and a few into the first 90 days of treatment. If Tipper is doing well and all of her symptoms have resolved, then I would agree to leave her where she is and see where cortisol levels are in 30 days. You'll find that a lot of members believe that treating the symptoms are preferrable to treating the numbers; however, I'm not one of them. I believe therepeutic ranges are established for a reason. It is when pre and post stimulated cortisol levels are within this range that one can expect full resolution of symptoms as well as continued normalization of blood and urine abnormalities.

Tipper is early on in treatment so if she were mine, I'd do exactly as Dechra has recommended. FYI, their recommendation is contrary to their published monitoring protocol which reflects that a dosing increase is recommended if any post stimulated cortisol in excess of 9.1 ug/dl, regardless of symptoms. If you are confused, you're a perfectly normal cushdog parent. It's all overwhelming at times and not everything makes sense until you have all the pieces of the puzzle. Trust me when I tell you that if you make a concerted effort to educate yourself, you'll wake up one day and realize you have all the pieces to the puzzle and that somewhere along the way, you became an excellent advocate for Tipper. You are well on your way, Patti.

Glynda

Glynda:
Thank you so much for you help. I wanted to give you Tipper's other results :
8-1 Pre-6.4 Post- 27.9
8-24 Pre- 7.6 Post- 4 hr1.3 Post 8 hr 1.0
9-12 Pre- 9.6 Post- 15.2
10-10 Pre 4.6 Post 11.0
Do you still think she is on the right track?? I sure hope so. It seems Dechra does give conflicting information at times- look at the different things they told me about the tremors! In her blood panel she also has her electrolytes checked- I forgot that on the last post. You guys are all sure amazing, as my head feels like it will burst from all the Cushings information. I am so glad for you all this again, is a blessing to be able to get your help. Hope all the babies have a good day.

Glynda:
Please look at my thread I posted Tipper's stim results and want your opinion if I am still doing the right thing with her.
Thanks in advance, you are a life saver.

Hi. I'm looking at the results and they did come down from Sept to October and I can see why they might think that staying the course is the thing to do for now if the numbers continue to come down.
I'd go with symptoms and how they are doing and then retest in November, staying at this dosage unless any symptoms get worse.
If I understand correctly, while on treatment you are looking for the second number (the post) to come down to below 9.0. It's moved from 15.2 to 11. in a month. You don't want a fast downward spiral as often cortisol levels continue to drop (but because they can always start heading north, we do the testing). We aren't seeing that here though. So, I think you are fine for now.
Lets see what November looks like and how Tipper's symptoms are.

hugs,
Sharlene

Sharlene:
Thank you so much for looking at Tipper's numbers. I second guess, third guess, and fourth guess everyhting I do!! I am a novice at this and really appreciate the help. I hope she keeps going well, and staying on course. God Bless you and all the babies on here. Hope all the babies have a good day>

Hi Patti.

Sorry for missing your post yesterday but see Sharlene had the bases covered. The opinion I expressed in my prior post included consideration for Tipper's last post stim of 11 ug/dl. As long as Tipper's symptoms have resolved completely, then I'd stay the course for another 30 days.

Glynda

Glynda:
Thank you for your help I really appreciate it since I am in the dark on many of these issues.

Has anybody heard from her lately? I hope everything is ok.

Hi Patti,

How is Tipper doing? and you? We haven't heard from you in awhile. You know we are worry warts. :)

Hope you are both doing okay.

hugs,
Sharlene and Molly Muffin

Hi,
Just checking in to see how things are going for your baby?

Everyone:
Thank you all for inquiring about Tipper. We have been spending some intense time together. I cherish every second of it. Tipper has been doing very well. So well in fact that it is scaring me. I am so afraid that this " grace period" will come crashing to an end. Tipper has been pretty much symptom free for the most part. She does however still have a ravenous appetite. I called Dechra as her last stim test was an 11, and I was concerned. They had the Vet there call me. He explained many things to me that I did not know. He told me to give her another month and the hunger should subside. He said he was not in favor of upping her meds right now. I hope I am doing the right thing listening to him. What do you all think? What would you do??? I am worried if her number is not low enough, that this could be doing more damage inside of her??? I have just been living every day scared to death that this good period will end. I do read the entries on the forum, but get depressed when I hear of others having so many problems, and of their dogs passing. I am scared to death that this will be my Tipper's fate. I think I am actually borderline paranoid from watching every little thing she does, in an effort to catch anything that is going wrong. Nobody said this was easy, but it can and does give me a lot of anxiety. Of all the dogs I have shared my lifetime with, she is the most precious and special to me. I pray to God to keep this miracle going for her, and that she remains symptom free. This disease is so scarey that even though she doesn't exhibit symptoms, I am still petrified of what is going on inside her. I am naturally a worry wort, so this has kicked into high gear with me. I am trying to manage it day to day, as it effects my Lupus badly. Tipper is very energetic, walking sometimes 5-6 times a day, plays ball, jumps up on her hind legs like a spring, and has a good quality of life. She has no skin issues, just her allergies, eats well, and is resting better, but still snoring loudly, and having the muscle contractions. She has become very frightened of noises, anyone having this problem?? If so what is causing this? It is hard for me to reconcile that all this can be snuffed out in a heart beat. I pray for you all, and all your babies as this is definitely a life changing experience for us all. Sorry to ramble on, but some of these things are hard to hold inside, and better let out with understanding friends. For better or worse we have all been brought together for the same reason, the love of our companion animal. I still wish we could all get together, and become a positive force in finding a cure for this disease. I want to get some entity interested in studying this disease, and stopping it ,so others do not have to go thru this. There are many funds for researching other diseases, but I have not seen any for this. I think this is the best way to honor our babies, think about it, maybe we could initiate something and get the ball rolling. God Bless Us All

So glad to hear from you! Even better is know that Tipper is doing A-Okay. I'd keep Tipper just where she is as that was the recommendation from Dechra and she appears to be doing very well on it.

Now don't go borrowing trouble that you don't have by worrying so much. I know we all tend to do that, but you need to think about how it is not good for your health to do that either. Enjoy the now, as you are doing, while Tipper is feeling good. That is what is important. Hugs!

We know how hard it is sometimes to read of peoples problems and the furbabies and understand that. Comment when you want to or ask any questions. Just know that we tend to be worry warts, so don't be surprised if we start looking for you. :)

Not sure what would cause the noise fright. I just have the thunder/lightening fear to deal with.

Sharlene and Molly Muffin

I know so well how you are feeling. Squirt is my heart-n-soul dog, she literally saved my life, giving it purpose when I had no hope left. She is the light of my world and I cannot fathom one single day without her. We have been together since she was 5 weeks old and she will be 15 in Feb. She was 10 when we started this Cushing's journey and I prayed for 6 more years, just 6 more.

There are times when anticipatory grief takes over and I can barely function. I look at her, knowing she is getting old, knowing our days here are numbered, and the air doesn't want to come into my lungs, my chest constricts, my throat tightens and burns. Tears will start flowing unchecked then she will roll over and look at me with such love and joy in her eyes along with the promise that she will never really leave me, that she will always be with me no matter what, that we will never be truly apart. Her eyes remind me of my faith, my belief that all life is a circle, that there is no ending without a beginning, that the physical will change but the Spirit remains constant, that our Souls are bound together for eternity. And I can breath again.

I have to remind myself constantly to take every minute as it comes, to find the beauty and joy each offers, and to hold on to that with all my might. Everything is more precious, even the things neither of us enjoy, like trimming nails and washing the face. Everything makes another memory to store and cherish against "that day". I remind myself that her Light will always shine, she will always "be" in one form or the other, that we will always be together. A friend once told me we are all made a promise - a promise that even though things may change those we love never really leave us; a promise that we will be reunited with them one day; a promise that separation is only temporary. I cling to that promise and find a great deal of comfort.

Keep your chin up, honey, keep the faith, remember that promise. Our babies know they are loved more than words can express and that is all that really matters.

Hugs,
Leslie and the gang

Leslie:
Thank you so much for all the kind words, and encouragement, I needed them badly. Tipper has been acting strange the last few days. Very paranoid behavior, pacing and listening for whatever, with a distant look about her. Yesterday when we went for her blood pressure check it was up at 170. She had constantly been 160 then 2 weeks ago went down to 125 in a matter of 8 days. She stayed at 125 for 2 weeks. I was told the 125 is a good number?? Now we are at the 170 which is scaring me since her behavior has been so odd.The Vet said she was really anxious and that could account for it- but rising 45 points??? She is still contantly starving, and cries when I get her food ready. Last night she was very restless. Her last stim was in October. She is not supposed to get another one until January. Do you think I should get another one done to see what is going on or wait? She gets her blood pressure checked every week on Wednesday. Should I wait till the next BP check? When she got up this morning she had lots of white mucus in her eyes- both of them. Not sure what this has to do with anything. She has never had this before. This is so scarey not knowing what to do. I appreciate the time you took, and the beautiful things you wrote. They all sum up my feelings for Tipper too. Living every day being scared is not easy to do. I am trying to keep my anxiety down, but it is not easy. Anyone have any suggestions I would greatly appreciate them. Thank You again, and God Bless Us, and all of our babies.

Hi Patti,

At the time of Tipper's last stim test, you mentioned that all of her symptoms had resolved. You now mention that she is starving all of the time now. Has that symptoms recently returned? Since the post stimulated cortisol was high (11 ug/dl) on the last stim test done over a month ago on 10/10, I would definitely want another stim test done to see where Tipper's cortisol levels are now. It's possible her cortisol is higher now or it may still be hovering around the 10/10 levels, but in either case, an increase in dose may be necessary.

Glynda

Thank you Glynda- Tipper never really had the ravenous appetite. All Jack Russells love food, so she always did want food. It has become very pronounced now, and she can't wait to eat and cries when we eat anything. This is the only symptom that has cropped up. The rep at Dechra told me to wait another month and see if it subsides, but it is becoming a problem as she will jump all over you and beg an hour before it is time for her to eat. It does seem to be getting unmanageable, as she cannot eat all day long or we will have weight issues. I hate to put her thru another test, but I am torn at what to do. Is the hunger issue controlled if the cortisol is where it should be? She is getting super upset going to the Vet's all the time, and that is a bad thing also. What would you do? Thank you for your help.

An insatiable appetite is a hallmark of Cushing's, so I would have another ACTH done asap to see where the cortisol is now. It may well have continued to rise causing the hunger to grow.

I wonder if the cortisol is rising if that could have anything to do with the behavior change of acute paranoia and fear. I've never heard of it before, but you never seem to know with this disease. :(

Maybe you can make going to the vet a good thing. Treats when you get there, some play time with a toy in the car before you get out, something like that?

Keeping you in our thoughts and hearts.
Sharlene and Molly Muffin

Thank you both for the help. My Vet is out of town, so I will call and schedule her test for Wednesday when he is back. I am scared to put her on more Vetoryl and crash her. Since she is at 11 do you think that is a possibility? I will do whatever I have to to get this in check, but I am petrified of this drug. I know it can escalate macro tumors, and I have been suspicious of Tipper having one, with all the paranoia etc. God help us both, as this is starting to overwhenlm me again. Thank you.

Cortisol is a sort of stimulant and can make them feel restless for sure so I don't know why anxiety and paranoia couldn't be seen with elevated cortisol as well. I know the times I have to take a round of pred it makes me very hyper in most areas and from the outside I could be pegged as nuts, paranoid, hyperactive, over-reactive, easily spooked, etc. From the inside, it feels like ants are crawling, like I have to keep moving even when I have no idea what I am doing, hyper-alert to every little thing, difficult to concentrate for long...but it makes my body feel really good otherwise - no pain, no constrictions. So I would think Tipper's behaviors could easily be contributed to rising cortisol in my feeble mind. :o

Hugs,
Leslie and the gang

Thank all of you for the input. I made her an appointment for Wednesday for another ACTH. I hope God is looking out for her, I am scared to death to up her meds and have her crash. This dog means the world to me, and I am trying to manage all this without upsetting her. Please all of you pray for her that she gets past this.

Since she still was restless at night, you may want to think about twice day dosing so her cortisol is more evenly controlled throughout the day. Every dog is different but when I left Zoe at 11 ug/dl last year, she drifted down to 9 but then went back up to over 12ug/dl. I never changed her dose during that time. It could be her cortsiol is drifting higher and it is causing a problem for her in the way of hunger and restlessness.

It is so hard for us to know what is going on with them.

Ususally, they up the dose maybe 25% then divide in two for twice day dosing. Maybe discuss with your vet.

Hang in there.

Tipper started on 10mg once daily but after Patti's vet consulted with Dr. Peterson, they put Tipper on 10mg twice daily. Her last post stim was 11 ug/dl and Dechra's response was because she is early in treatment and symptoms were improving, they didn't feel any adjustment to dose was approriate at that time. That was more than 30 days ago.

Patti, just a reminder to get Tipper to the vet within three to four hours of dosing and make sure she gets a small meal with her dose.

Glynda

Thank you for reminding me, Glynda. My adled brain got Tipper confused with our insomnia pup:o:o:o:o

Never mind:D:D:D:rolleyes::o

Thank you girls!!! I will get her to the Vets within 4 hours and make sure she eats a small meal. If she has to go on 30 I called Dechra today, and Dosha told me if she is post 11 or higher we would go to 30mg. She would get 20 in the morning and 10 at night. It makes it really more expensive because I have to buy the 10 mg boxes. That will make it 150.00 a month! Well I have learned to cut out a lot of things, and not buy things that aren't absolutely necessary, in order to afford to do everything Tipper needs. I don't care what I do without as long as she gets what she needs. It is surprising the money you learn you were wasting on things that did not need to be purchased. This has taught me many lessons. The most important of them, is that my love for this dog is greater than anything else in this world. I will do anything to save her life. Thank you all for the help and support, as every baby step with this is scarey. I am so glad to have you and all your expertise to guide me. My Tipper is still going today because of the wonderful kindness of the people on here. God Bless Us All and out Furbabies.

Ladies: I forgot something- my Vet had been doing Tipper's test at 6 hours- he said from 4 to 6 hours after her pill and food. Was that ok?? If not I am going to make him do it at 4 hours from now on!!! Thank You.

As long as the test is completed within six hours, you're good.

Happy Thanksgiving to you and Tipper

hugs,
Sharlene and Molly Muffin

Hi everyone:
Just got the results of Tipper's ACTH and wanted to post them , and of course have questions for everyone.
The numbers are:
Pre: 1.4
Post: 8.7
The Vet said due to these numbers her medication will stay the same 10 mg in the morning and 10mg at night.
Now here is my dilemma. I told you about her being hungry all the time, she cries for food, and practically knocked me over one day to get at it. She was eating slightly more during her higher cortisol numbers, as I could not listen to her cry anymore. I gave her veggies, and low calorie things to help her thru the hunger. She still gained almost a pound from it which has to come off. If her number is good, why is she still starving? Do you think the extra food stretched her stomach a bit, and now is still truly hungry? It seems genuine and I don't know what to do. As hard as it is I already started cutting her back. Jack Russells can be a real handful, and when they want something they fully intend on getting it. My Vet is calling the Vet at Dechra about it, but we probably won't hear anything until Monday or so. The extra water consumption may be because she had a bladder infection, or so says the Vet. Not that she is drinking loads of water, but more than her "new normal." So I ran her back to the Vet today and they gave her a 2 week antibiotic injection. Her stomach doesn't tolerate antibiotics well. The Vet said the report said there were some crystals in her urine, but that it could be from sitting in the refrigerator in that morning which can also cause crystals, so next Wednesday he will run a test in his office to see if his also has crystals. I will get the urine first thing in the morning and not refrigerate it, and go straight to his office. Well I know I am rambling on here so I will stop. Please everyone tell me what you think about this situation, I am most appreciative for the time you have all spent helping Tipper and I get thru all this stuff. Hope all your babies are doing well. Tipper and I say prayers for all of you. We are getting ready for our first snowstorm of the year, so Tipper will be delighted if we wake up to the white stuff. She has always loved the snow. It would be nice to see her happy!!

Glynda:
I know it is the start of the holiday season and you are probably busy. If you have a few extra minutes to read my last post I would appreciate it, I need your opinion.
Thank you and God Bless all of us and our babies.

Hi, jut a couple quick questions. Did you hear back from the Dechra vet? You said your vet was going to call them and ask about the hunger and the numbers? Did they do another urinalysis and did it show crystals? Did taking the anitibiotic shot help with anything? Did they confirm a urinary infection?
Sure optimally we'd like to see the post number down under 5 for control, but that doesn't always happen. For instance Zoe, Addy's baby, goes up and down. Based upon what Dechra ends up saying, perhaps talk to vet about doing a 5 mg in evening, 10 in morning dosage, or 5/5 even to see if that helps. You would need to get that from a compounded pharmacy, but it is certainly an option to talk to them about if you feel like the hunger is out of control, that Tipper is truly miserable, etc. How has the peeing been? Is that under control at all, or is Tipper having accidents with the increased water consumption?

Some of the questions I am sure that Glynda would want to know too, based upon your last update.

hugs,
Sharlene and Molly Muffin

Hi again from me! Like Sharlene, I am wondering whether you've heard back yet from Dechra. I would think that a dosage increase would be in order, so I'm curious as to their recommendation. Tipper has now been on her current dosing regimen for close to two months now, right? So if she is exhibiting symptoms and her cortisol is still hanging up there around 9 ug/dl, I would think it would be time to up the trilostane a bit. If you stick with Vetoryl, the logical increase is from 20 mg. to 30 mg. in terms of a daily total, but I know you're currently giving a split dose of 10 mg. twice a day. So adding another 10 mg. to either the morning or evening dose will make things really expensive for you unless you switch to a compounded product. I don't know whether Dechra might consider going back to once daily dosing, and giving Tipper a single 30 mg. Vetoryl capsule in the morning. I'll be interested to hear what they recommend.

Marianne

Oops, sorry about that, I don't know why I thought Tipper was on 10mg, once a day. (Whew Glad Marianne knew the real dosage!) All my questions still stand though! Inquiring minds want to know!

Sharlene

Thanks everyone for the help. Tipper is going to the Vet's tomorrow to have an in house urine test- to make sure there are no crystals. She has never peed in my house. Even when she was drinking "gallons." Before Tipper got sick if I had to go somewhere for a long period of time I would put a pad on the floor. Never once did she use it, she has always been like that. She is drinking more water than usual, but not nearly the amount as when this first started. It could be too, that I am not used to seeing her go to the water bowl so often, as when she did not have cushings, and it seems like a lot to me. It is too hard for me to measure because I have 2 cats and 2 dogs. They all go to various bowls. The antibiotic shot is probably helping her- she showed no symptoms of an infection, it just showed in the urinalysis. I don't know exactly what the report says as I will get my copy tomorrow and let you know. The Vet said he was calling Dechra about this hunger- but, he unfortunately has to be prodded all the time to do what he is supposed to. I will get on him tomorrow. I do not want to go to 30 mg 1 time a day- the Vet at Dechra said not to go up anymore the last time I talked to him. I do not want to use a compounding pharmacy, as I do not believe the dosage is reliable. I will see what they say tomorrow. Even though the split dose is more expensive I prefer it, as it is better for her. If need be I will use 2 -10 mg in the morning and one at night if that is what they suggest. It will be very expensive, but Tipper is very sensitive to things and my Vet and I are worried to give her a 30 mg capsule may cause a reaction in her. I am wondering if the hunger is just Tipper's Jack Russell behavior. It is hard to determine. They want food all the time even when she didn't have Cushings. Could this be a habit from me giving her extra things to get her thru to the next meal when she had severe symptoms?? I am scared 10 more mgs may crash her. I will let everyone know when I get back tomorrow. Thank you all for your help.

Hi everyone:
Again thank you for the help. Just got back from the Vets and had to get on his case about talking to the Vet at Dechra today ,and finding a solution to the hunger issue. Tipper is on Vetoryl and she previously started out at 27 Post on 10mg.then down to 11 Post on 10 mg in the morning and 10mg at night, and is now 8.7 Post on the 10 mg one in the morning and one at night so I assume it is still too high. At 8.7 if she is given 10 more mg in the morning what do you think the chances are of her crashing??? This scares the hell out of me. I will let you know when the Vet calls me today what Dechra says.
The urine test results were:
Bilirubin- 1+ this is high but barely- and I read it can be because of the infection. Reference range- negative
WBC- 6-10 reference range 0-5HPF
Crystals 4+ CA Oxalate (>10) The Vet gave her another test today as he said when you send it out and it sits in the refirgetator in can form crystals from that. He is doing one in house that I took with me and had not been refrigerated. I will post the results when he calls today.
Pleas let me know what you think of all this, I am lost and need some help figuring this out. Thank You all in advance.
She still seems genuinely hungry to me and cries while I get her food ready.

Of course I would defer to Dechra's recommendation, but if they do suggest a dosing increase, I would not be too worried about Tipper crashing. Of course, that is easy for me to say since she is not my dog :o. But if she WERE my dog, I'd want to get the optimal benefit from the Vetoryl treatment, and it doesn't sound as though you guys are there yet.

When you added the extra 10 mg. last time, it only dropped her cortisol level from 11 to 8.7. Since the lower level of Dechra's desired therapeutic range is 1.45, you still have quite a ways to go before Tipper's cortisol falls too low according to their protocol. So if they suggest a dosing increase, I'd give it a try if it were me. ;)

Marianne