Pickles - Sad Devestating News, sweet Pickles has passed

[picklespie]

http://instagram.com/p/uyP-ZdnAMU/?modal=true

My dear little Pickles the cavalier king Charles was diagnosed on Christmas eve... I know very little about cushings, however one thing I've noticed which I find really distressing is Pickles constantly sleeps (or tries to) sitting up.. his front paws slip forward and last night he actually banged his head on the floor.. has anyone else encountered anything similar to this? or is it totally unconnected? Any help or advice gratefully appreciated... he is due to see our vet again on Monday.

[labblab]

Hello and welcome to you and Pickles! I'm sorry it took so long for us to greet you, but we are really glad you're here! In relation to your specific question, no, the issue of the front paws slipping is not one with which I am familiar in relation to Cushing's. However, can you tell us more about the other symptoms that led to the Cushing's testing? Also, which diagnostic tests were performed? Any and all specifics that you care to share with us will be greatly appreciated, including actual test results.

Thanks so much in advance, and we look forward to learning much more about your little boy.

Marianne

[Squirt's Mom]

Hi and welcome to you and Pickles! :)

Love the name! :D

How old is Pickles?

What prompted the vet to test for Cushing's in the first place?

Are you seeing any cush signs? If so, which ones?

Are you seeing anything like the toes/feet turning under? Does he circle excessively? Does he cry out? Does he seem at times not to know how to get out of a corner? Has he lost any house training skills (having accidents)?

I hope to hear from you again soon with LOTS more info on your sweet boy.
Hugs,
Leslie and the gang

[Dixie'sMom]

Hi and welcome to the group. You have found the right place to get help with your sweet pickles! LOL (sweet Pickles). The experts on this forum are very knowledgeable and will help you every step of the way. I am a fairly new Cushpup Mom myself and like you was extremely worried and upset when I got the diagnosis. The folks here helped me realize that Cushings's is treatable and not a death sentence. The most important thing is to educate yourself and ask questions. The Resource Forum here has a lot of very good information and will give you a great start.

I look forward to getting to know you and Pickles. Hang in there! Help has arrived!

[picklespie]

Hi, my dear little Pickles has been on Vetoryl for a week now. I am unsure of how quickly I should see an improvement, and wondered how quickly others have seen an improvement in their dogs?? He is so tired still all the time, however the sitting up and falling asleep totally exhausted is not so frequent, but he just looks so sad and miserable. He is due to go back next week for another ACTH test.... I'm hoping he is improving... even if its very gradually.

[Renee]

Hello there,

It would be very helpful for you to provide us with a lot more information.

What dose of vetoryl is your pup on? How much does he weigh?

What symptoms and testing led to the cushings diagnosis, and can you get copies of your test results and please share them here?

In answer to your question - it seems that around 10 days is where something noticeable will happen as far as symptom control, but please do not expect drastic improvement. In fact, it seems to me that when people see immediate improvement, their dose is too high and the cortisol drops too much too quickly. Cushings progresses very slowly, over time, and resolving symptoms should go slowly as well to be safest.

[Squirt's Mom]

MODERATOR NOTE: I have merged your post about length of time to see improvements into Pickle’s original thread. We normally like to keep all posts about each pup in a single thread as it makes it easier for members to refer back to the pup's history when needed. Thanks! I have also added Pickle's name to his thread title so it will be easier to find. ;)

[picklespie]

Pickles weights 11k... I will post a copy of his test results when I see my vet again next week. Pickles has never been a hugely energetic dog, even as a puppy! so the change in him has been subtle. We noticed that he started drinking an awful lot and panting. He has always had a big appetite so again I didn't notice a change in that. He also seemed to be sleeping more than usual. The symptom that caused me to take him to the vet immediately was him sitting up, his head started going forward and he literally collapsed asleep like that. . Then he would wake and sit up then do it again... Its so distressing to watch.I took a recording on my phone of Pickles doing this continually and took it and showed my vet. My vet said he had never seen a dog display that as a symptom before, but my vet was very thorough and said he believed it was Cushings and tested him accordingly. Pickles also doesn't appear to have full control over his limbs all the time... his feet really slip now when he walks across the tiles in my kitchen... I've put a mat down now so he can grip the floor easier.
I've found this website invaluable and a real comfort, reading and sharing experiences with others who know exactly what you are going through. I'm hoping when Pickles has his ACTH next week there will be some improvement... he is only 6 and such a huge part of the family... I just want him well...

[momakah]

Hello, I read your first post just now:Poor Pickles! And yes, it can make you feel down( I was crying every day for a while) Harry finds it difficult on tiled floors too, he seems to slide backwards and has to adjust his front paws; constantly changing position. Its only when I read your post that I remembered he does that. He has great difficulty in climbing the stairs, getting into the car needs us to help him in. But the energy level seems to be improving,just not in leaps and bounds. Harry loves being stroked and brushed and crooned over! So thats what I do when Im home from work.
Our beloved boys!!
Hope Pickles feels better soon.:)

[LauraA]

It can take some time for the Vetoryl to work. Bulger really improved around the 4-6 week mark. Her panting probably took a good 3 months to be better controlled. The dose may need some tweaking as well so the signs of improvement may be more subtle if the dose is a bit low. It is much better to go low and slow though - less risky for them and less stressful for us :) Once you get the results and post them the experts here will give you great insight in how to proceed. Hopefully precious Pickles will start to show some improvement soon - he is pretty cute by the way!

[picklespie]

Pickles has been making slow and steady progress since starting the vetoryl just over 2 weeks ago. Yesterday he went in for his ACTH test.. I've been home with him all day today and its like all the progress has vanished. He is sitting up and falling asleep to the point that he almost hits his head on the floor ( I am constantly following him around with a cushion) and no energy...Its totally bizarre as yesterday I was telling the vet how he seemed so much better. The test came back that he now has a level of 50... before the treatment it was over 1000.... so my vet seemed really pleased... I'm so confused, could it just be the effects of the ACTH test he had yesterday????
Any ideas, or thoughts greatly appreciated

[ScottieBoo]

I hope pickles gets back to normal soon. I cannot give you and answer because I just started my Scottie on his treatments. His first ACTH Test after loading for two weeks will be this Saturday. But I wanted to thank you for posting this issue you have with Pickles. It truly helps people like me to know what to look out for. I am just as curious to see what others post that it may be. What did your Vet have to say about him just falling down and asleep?
Gino- Scotie's Dad

[picklespie]

I took a video in and showed the vet, he said he hadn't seen anything quite like it, however he thinks its exhaustion due to the cushings... I've called my vet to explain Pickles behaviour today to see if he think it may be connected to his ACTH test yesterday... He is calling me back.

[My sweet Ginger]

Hi, my pup had quite a few ACTH tests in the beginning and I never noticed any reaction from them but I've heard some pups on the forum had tho I don't remember if they were similar reactions to yours. Give him a day or two and see if he gets better.
Can you please post the results of both pre and post numbers from yesterday's ACTH stim test and hopefully Marianne will convert those numbers into ug/dl for us.

[Squirt's Mom]

Some pups do seem to have a hard time with the stim agents used in the ATCH but I don't recall any displaying the signs you describe. These pups don't always read the rule book tho and just sorta do their own thing so unless it gets worse, I wouldn't worry too much right now. Let us know how he is later!

[labblab]

Pickles has been making slow and steady progress since starting the vetoryl just over 2 weeks ago. Yesterday he went in for his ACTH test.. I've been home with him all day today and its like all the progress has vanished. He is sitting up and falling asleep to the point that he almost hits his head on the floor ( I am constantly following him around with a cushion) and no energy...Its totally bizarre as yesterday I was telling the vet how he seemed so much better. The test came back that he now has a level of 50... before the treatment it was over 1000.... so my vet seemed really pleased... I'm so confused, could it just be the effects of the ACTH test he had yesterday????
Any ideas, or thoughts greatly appreciated
If Pickles' ACTH results are being reported in units of nmol/L, this is how they would convert to the units which are more commonly used in the U.S. (I am assuming these are both "post" ACTH results):

Before treatment: 1000 nmol/L = 36 ug/dL
Yesterday's test: 50 nmol/L = 1.8 ug/dL

If my assumptions are correct and Pickles' cortisol has dropped this abruptly in just two weeks time, it is no surprise that he might be suffering from cortisol "withdrawal" symptoms. And he very likely needs a dosage decrease to keep his cortisol from continuing to drop further to a seriously low level. On the face of it, I understand that your vet probably thinks this is a great result. But given our experience here, we have seen dogs who have ended up crashing with Addisonian symptoms when their cortisol levels have dropped so sharply so quickly.

I know your vet will probably not take our word for it, but please please please ask him to call Dechra's offices directly in order to consult with one of their staff vets. I feel certain they will advise him to lower Pickles' dose!

Marianne

[My sweet Ginger]

What's Pickles's weight and Vetoryl dosage? Looking at his low end of post number you could be dealing with symptoms of low cortisol rather than a reaction to ACTH agent. Will you please post his pre and post numbers to see if there's any stimulation between the two numbers?

[Squirt's Mom]

MODERATOR NOTE: I have merged your post about ACTHs into Pickle’s original thread. We normally like to keep all posts about each pup in a single thread as it makes it easier for members to refer back to the pup's history when needed. Thanks!

[molly muffin]

At 11kg, he is 24.25 pounds. Vetroyl should be given at 1mg/1lb so I'd say he shouldn't be on any more than 30mg of vetroyl. That is a HUGE drop in very little time though.

My dog has a reaction to the ACTH test and I call it the ACTH spazz as she is all over the place running around, wanting food, in general just all over the place like a space cadet.

As I've never heard of a symptom like Pickles has of falling asleep sitting I can't say what sort of reaction that is to cortisol, but he definitely dropped like a ton of bricks and cortisol will keep decreasing even on the same dose for over 30 days usually.

[picklespie]

Thank you all so much for the advice, I have spoken to my vet yesterday and I am to monitor him for the next 48 hours, if no improvement I have to take him back in to see him. My vet is saying he may need and mri scan as the cushings may be caused by a tumour???

[Renee]

If this were my dog, and after only two weeks on vetoryl, the post cortisol dropped that low, I would immediately lower the dose, or even stop it for a bit. This is way, way too fast for the cortisol to drop.

Also, all cushings is caused by a tumor either on the pituitary gland or the adrenal gland .... so, I don't see how what your vet is saying has anything to do with such a dramatic drop in cortisol?

I urge you to lower the dose or stop it altogether for a bit.

[labblab]

You may actually have two different issues that you are dealing with here. One is Pickles' very odd "sleepiness," which actually started before you even began giving the Vetoryl. The second is the fact that Pickles' cortisol level has dropped enormously after only two weeks on the medication. Per the manufacturer's own published information, you can expect that Pickles' cortisol level will continue to drop further even if you leave his dose unchanged. And you really cannot afford to allow it to drop any lower!

These two issues may be related or unrelated. But I again urge you to urge your vet to please contact Dechra and ask their advice re: these ACTH results. To me, that is the first priority because continuing at this same dosing level can rapidly result in an Addisonian crash. Once that part of things is settled, you can move on to trying to figure out what is causing Pickles' sleepiness.

Marianne

[Dixie'sMom]

From the very beginning when you described Pickles falling asleep, I thought "narcolepsy". I didn't mention it because surely your vet has considered it. Ok, so I'm asking... has your vet mentioned it or checked him for it?

I am like Marianne. I, too, believe that it's possible that there are 2 separate issues going on. The first being neurological, the other Cushings. I suppose the pituitary tumor could be large enough to be causing neurological problems. The pineal gland controls sleep cycles. If the pituitary tumor were large enough to cause compression on the pineal gland... well it could be a possiblity.

All of this is speculation on my part. I'll be interested in seeing what your vet plans next.

I also agree with the others. Please stop or lower the Vetoryl now... today. I want your sweet Pickles to get well and too much Vetoryl is worse than none at all. Hugs!

[picklespie]

Having read all the very helpful advice and comments I am calling the vet first thing and questioning the safety of such a rapid drop in his cortisol and whether I should continue or lower the dosage of the vetoryl.
Thank you all.

[Squirt's Mom]

Before you talk to the vet, check out the Helpful Resources section for info on how to use Vetoryl. You will find a flow chart that details when to stop the med...and you are approaching that point with the last test. Since the meds have continued, that number is probably lower and in the range that Dechra says to stop.

[picklespie]

Have spoken to our vet who has said under no circumstances stop or lower his dose....

I requested that they email both his ACTH results... here they are but I find them difficult to understand.

The first is prior to taking the vetoryl
ENDOCRINOLOGY

Test Result Alert Units Reference Range

*Canine Serum TSH 0.08 ng/mL 0.00 - 0.50
*Free T4 (Immulite) <3.9 Low pmol/L 7.7 - 47.6
ACTH Stimulation Test
*Cortisol pre ACTH 258.0 High nmol/L 25.0 - 125.0
*Cortisol post ACTH >1380.0 High nmol/L 125.0 - 520.0

The second after taking vetoryl for 2 weeks
ENDOCRINOLOGY

Test Result Alert Units Reference Range

ACTH Stimulation Test
*Cortisol pre ACTH 48.6 nmol/L 25.0 - 125.0

I am in the UK so not sure if the readings etc are the same as in the USA.

Any thoughts or feedback very much appreciated as in such a dilemma as what to do for the best.

[Renee]

Hi there,

The second ACTH should have a post figure as well, just like the first ACTH test did.

I understand you are in the UK, and that may impact the dynamic you have with your vet ... but, I must encourage you to demand your vet call Dechra and discuss such a rapid drop in cortisol with them. Dropping the cortisol so quickly in just two weeks is a recipe for disaster!

Also, having seen these results you've post, I am concerned your pup may have thyroid issues and not cushings at all. Has anything been done to address the low T4?

I know it's hard, but please know that you are your dogs only advocate. We are not trying to make things harder for you, just helping you keep your pup safe.

[picklespie]

Cortisol post ACTH 51.6 Low nmol/L 125.0 - 520.0

(left this off the previous post)

I have aired my concerns with our vet but he has told me under no circumstances stop or lower the vetoryl.

I have always had good faith in our vet so I really don't know what to do...

[Renee]

Most of us are used to ug/dl, so here is the conversion

ACTH prior to treatment:

Pre 9.35 ug/dl
Post 50.01 ug/dl

ACTH after two weeks of vetoryl:

Pre: 1.76 ug/dl
Post: 1.87 ug/dl

I'm just gonna be pushy here and say these numbers are downright scary! To drop from a post cortisol of 50 to less than 2 in two weeks alone is a recipe for disaster. You may have always trusted your vet in the past, but he is FLAT OUT WRONG about this. The only person to pay the price in the end will be your pup. I am urging you to read up the Dechra protocols, even call them if you can, and arm yourself with the published literature, then talk to your vet again.

[labblab]

Unfortunately, the experience of many of our U.K. members is that the U.K. Dechra office prefers to communicate only with vets rather than directly with owners. However, you have nothing to lose by trying to consult with them. Here is a "Contact" page with both a telephone number and also an email portal.

http://www.dechra.eu/Footermenu/Contact-us.aspx

If you choose to email them, this what I would say:


My Cavalier King Charles Spaniel has been taking _____ mg. [you fill in the dosage since we don't what it is] of Vetoryl daily for two weeks. Per his first monitoring ACTH test, his cortisol has dropped markedly in just two weeks. Would you recommend to my vet that his dose be lowered as a result of this rapid, very sharp drop in cortisol? My dog is behaving very sluggishly right now, but my vet advises me to leave the dose unchanged.

Diagnostic ACTH:
Pre: 258 nmol/L
Post: 1389 nmol/L

Monitoring ACTH after 14 days of treatment:
Pre: 48.6 nmol/L
Post: 51.6 nmol/L

Hopefully, Dechra will respond to you directly or else ask you how they can contact your vet. In the meantime, you need to be watching Pickles very carefully for additional symptoms of crashing cortisol such as inappetance, vomiting, diarrhea.

Marianne

[molly muffin]

It is beyond frustrating that Dechra has not updated their website with the updated dosing protocols and that cortisol will continue to drop for 30 days on the same dosage. I am disgusted as it puts the dogs life at risk (and that is why they made the change) It would help if they would get this information out to the vets appropriately.

My dog is 18lbs on 8mg and she dropped at 2 weeks, we didn't change the dose and she continued to drop for the entire 4 weeks before leveling out.

That is why we are so worried. You are very very close to the bottom line already at 2 weeks. If he drops any lower, I suspect you will end up in the emergency, as it would be life threatening.

I could rant on all day about the vets who don't "get it" because they follow old out dated guidelines. And yes, if you look at the old brochure, it says to maintain at the current dosage. I'm sure that is what your vet is using. The numbers count though and the dogs actions count for even more as every dog can be different and be affected differently by drugs. It is why we always caution to start low and go slow.

Hoping for the very best. My fingers are crossed, but myself. I would tell the vet I'm not comfortable with this drop so quickly and you want to decrease the dosage. It won't hurt to decrease but it surely can hurt if it is too much.

[Squirt's Mom]

I sure wish you'd check in. ;) We are all very worried here, ya know. I understand that not all peoples can have the kind of relationship with medical personnel that we in the US and Canada and some other countries can and it always breaks my heart when someone who is trying so hard to do the right and best thing for their baby get shot down by their vet. :( Please let us know how our sweet boy is doing when you can. And if you see any of the signs of an overdose - nausea/vomiting, loose stools/diarrhea, lethargy - stop the med and call the vet asap. If you have pred, give it asap as well.

Looking forward to an update very soon!
Hugs,
Leslie and the gang

[Dixie'sMom]

How is Pickles feeling today?

[picklespie]

Our beautiful boy had to have a mri scan last week. A large tumour has been found on his pituitary gland. Although radiotherapy may help some dogs after a very lengthy chat the with specialist we feel it is not the best route for our boy. He is so traumatised when he goes in for any procedure we feel this would be far too traumatic and it will not cure him only prolong the inevitable.
I can't put into words the pain I feel at the news he has a tumour. He is only 6 and the centre of our world.
All I know is the time we have left with him is even more precious. He is not in pain and at this present moment still has a good quality of life. We will know when the time is right to let him go, we wouldn't let him suffer, no matter how hard the decision.

[Harley PoMMom]

I am so terribly sorry that your sweet boy is going through this, and my heart goes out to you. I certainly do understand not wanting to put your dear boy through something that you know will traumatize him.

I know prednisone is used sometimes for pituitary tumors, as it helps to decrease the swelling, is your precious boy taking prednisone?

Please know we are here for you and your boy, and to help in any way we can.

Hugs, Lori

[Squirt's Mom]

I am so sorry to hear this news about our sweet Pickles. He is right where he wants to be - by your side. Know we are here any time you need to talk.

[molly muffin]

Oh I am very very sorry to hear this sad news. Still love that name Pickles. Just brings a smile to my face when I hear as I am sure he brings smiles and joy to your world.

Big hugs

[pansywags]

I'm so very sorry to read the news about Pickles. I got similar news about a year ago and my heart goes out to you.

[doxiesrock912]

I'm so sorry!
This news is frightening.
Keeping all of you in my prayers.

[beaglemom3]

So very sorry to hear this news my prayers and thoughts are with you and sweet adorable Pickles

[Dixie'sMom]

I am so sorry to hear this news about our sweet little Pickles. Was this tumor the cause of his falling asleep while standing?

My heart goes out to you. Please know that I am here for you and your sweet baby. Hugs and prayers coming your way.

[judymaggie]

Sending lots of prayers your way--please give sweet Pickles a hug from Abbie and me!

[picklespie]

Many thanks for all the kind words.... every extra day we have with him is a true blessing. Our world will never be the same when we lose him.

[molly muffin]

Our world will never be the same when we lose him.

It never is.

Every day is precious.

hugs

[Blues people]

So very sorry about your news. This diagnosis is never easy to get.
when I questioned "why"? - we take every care!
My compassionate vet replied, we don't know, but thank goodness you are his caregivers. He is a lucky pup. And he knows it.

This is small consolation, I know. But it at the least, was validating that someone knew we truly cared.

Hugs

[Squirt's Mom]

How are things going with Pickles? Just wanted you to know you are missed.

[picklespie]

On Wednesday the 13th of May we had to let our beautiful boy go after being diagnosed with Cushings late last year and then in March he was diagnosed with a large brain tumour.
Last weekend he took a real turn for the worse and by Tuesday evening I knew in my heart he had, had enough. I arranged for the vet to come to our house so that our dear little boy was in his own environment and with myself and my husband. He laid in my arms and left us very peacefully.
The heart breaking pain I have felt ever since he left us is almost unbearable. I burst into tears constantly, and everything I go to do reminds me of him.. Our house feels so lonely, when I used to cook tea for the family Pickles would lay by the kitchen door keeping me company, when I did the ironing he would be by my side, when I wrapped presents he would be there, everything I do reminds me of his absence and I just have this gut wrenching feeling constantly. Our decision was the right one for him but our lives will never be the same.... he was only 6 and his birthday would of been next month

[judymaggie]

My heart goes out to you and your family -- all of us have pups who are totally integrated in our lives and it is so, so difficult to have to adjust after making the final decision. Pickles was much loved and I am glad that you could be with him as he departed this world and entered a pain-free one. Many of our pups were at the rainbow bridge ready to welcome him!

[picklespie]

Thank you for your kind words x

[Claire82]

I am so sorry for your loss. Dogs become a huge part of the family and are just like our children grieving for them never really goes away. You think of them with fond memories. Run free over the rainbow bridge xx

[labblab]

Oh, I am so very sorry, too. Thank you so much for returning to tell us, though, so that we may all join you in honoring your dear boy.

I have added today's reply to your original thread about Pickles. This way, you will always be able to find your replies about him all in one place. We hope you will stay with us so that we can offer you our support and strength during this time of pain and loss.

Sending you many hugs, always in loving memory of your sweet baby Pickles ~
Marianne

[LauraA]

I am so sorry to hear about Pickles :( I never stop missing my old girls passed. After some time the memories of the bad times start to get overtaken by the happy memories, unfortunately it all takes time. I am sure Pickles is worth ever tear that you shed.

[molly muffin]

Oh I am so very sorry for the loss of sweet Pickles. I know it is devastating the feeling of emptiness. My heart goes out to you and your family.

[Robert]

So sorry for your loss. Praying for Pickles on his journey and those left behind. You gave him release from illness but know how difficult that decision is

[pansywags]

I'm so very sorry to hear about Pickles. So many of us here know how hard it can be. Grieve in your own time, be kind to yourself and allow others to do the same.

My thoughts are with you and everyone who loved Pickles.

[doxiesrock912]

My sincere condolences on your loss of Pickles. Hugs