View Full Version : Hello I am a Newbie
04-08-2013, 08:28 AM
Hello everybody :)
I am go glad ive found you all, my beloved dog zak has been recently diagnosed as having cushings, but its such a lonely disease, no one other than the vet has heard of it and it can be very frightening when there isnt anyone to talk to when things are tough. We are new to the disease and still at the testing stage, he has been on different strengths of vetoryl and now he is on a 7 day break whilst the 60mg goes out of his system then having a vet visit of thursday then trying the 30mg.... His back legs arent good and I am looking to buy a doggie buggy for him....so we can still go walking and we can be together rather then he be stuck at home...I was wondering if the back leg weakness wll get worse or just remain as it is at the moment and Why just the back legs.... Any help or support would be appreciated.
04-08-2013, 10:56 AM
go to an IMS vet asap please. Many general vets are not as familiar with Cushing's as they can be. The meds help, but proper monitoring is essential.
Meds should be monitored with ACTH tests (4 - 6 hours after taking the medication).
I'm fairly new to this group and you will learn a lot from them!
Daisy Mae and I went saw 2 different vets prior to going to the IMS specialist at Cornell in Stamford, CT.
Sadly, money is an issue and I would have saved hundred of dollars had we started there.
Depending upon the reason for the back leg weakness, if it is Cushing's related with proper treatment this too should improve.
04-08-2013, 11:06 AM
Hi Thanks for your reply.
I live in England in the UK and as far as I am aware the vet is the first and last place to go in the United Kingdom. What is an IMS vet????
04-08-2013, 11:16 AM
Internal medicine specialist
I am also in the uk. Our vets usually consult with them they take a higher level of education than your usual vet in simplistic terms. We can see them over here you just need a referral from your vet (chargeable), have they sent you for an ultrasound as they are usually done at the IMS office.
As you are taking a break I am assuming that the cortisol level went too low which is why you are starting with a lower dose?
The girls will be on soon to ask you loads of questions about diagnostic tests to get to this point. Just wanted you to know there are uk members and I will help if I can. The medical bits are not really my strong point so I will let the others ask you those
You aren't alone now
04-08-2013, 12:24 PM
In the US, I have found in a very short time that the IMS Internal Medicine Specialists know A LOT more than conventional vets. I will not make that mistake again.
Best to get the referral right away and spend your money more wisely for the sake of you and Sunflower.
Treated early and properly, Cushing's is very manageable.
Also, while Cushing's is serious, DON'T put too much faith in all of the doom and gloom that you see online. Most of it is outdated and treatments have improved.
The key is getting to a knowledgeable vet when you first suspect that something is going on.
With Daisy, I knew that something was "up" for the past two years and trusted the IDB diagnoses that multiple vets were telling me. To this day, I truly believe that Cushing's was starting to rear its ugly head then, but I trusted the knowledge of the vets and thankfully I have learned differently.
04-08-2013, 01:57 PM
Hi and welcome to you and Zak.
With respect to Zak's hind leg weakness, this is a common symptom in cushing's, caused by the catabolic effects of high levels of cortisol on the muscles. This symptom eventually improves but it does take time as you can't rebuild muscle mass overnight.
The more you can tell us about Zak, the better we can provide you with meaningful feedback. What is Zak's breeding and how much does he weigh? What symptoms associated with cushing's did Zak have? Can you please round up all of the testing that was done to diagnose Zak, including subsquent acth stimulation tests and post the results here? With respect to blood work, you need only post the highs and lows and please include the normal reference ranges.
It would help us a lot if you could provide a timeline as to when Zak was diagnosed, when did treatment start and how long after that did he crash? Was he vomiting, did he have diarrhea, quit eating, extreme weakness? Did your vet immediately check his electrolytes and do an acth stimulation test? Were you giving the meds once a day or twice day with food? If any acth stimulation tests were done after starting treatment, were they done within 4 to 6 hours after dosing? Did your vet determine if Zak has pituitary or adrenal dependent cushing's? Sorry for the all the questions but establishing Zak's history from the get-go will help us a lot.
I'm sorry for the circumstances that brought you here but I'm glad you found us. It seems that canine cushing's is becoming a lot more common that it used to be. I'm not sure if that is because pet owners are becoming more computer savvy and researching the symptoms or perhaps the number of cases are growing. Now that you and Zak have become family, there is not reason to ever feel lonely again. We'll always be here to guide you through the rought patches and encourage you to be the best advocate you can be for Zak. An experienced vet and an educatated owner are a magic combination for a cushdog. Treatment almost always goes a whole lot smoother, with a whole lot less or no side effects. In that vein, I highly recommend that you access our Helpful Resources section, specifically the thread entitled "Trilostane/Vetoryl Information". I have included a direct link below:
I will be looking forward to hearing a lot more about your precious Zak.
04-08-2013, 05:52 PM
Hello and welcome to the family, you have found a great place with lots of info and encouragement along the way.. I don't know what I would do with out this site, so many helpful cush parents!! Take care and settle in!
04-08-2013, 06:52 PM
Hello and welcome to the forum from me too.
Glynda and Mel have both got you started out really well. Answering Glynda's questions will give us a good place to start.
I'm so sorry that Zak had a crash. Unfortunately, not all vets are as up to date on dosing for cushings as we would like and not all dogs react to the same amount of dosage the same, which is why monitoring testing is crucial for successful treatment.
Hang in there, we'll all here with you now!
Sharlene and Molly Muffin
04-09-2013, 07:17 AM
WOW!!!! There is alot to cushings which I didnt realise. Well here goes this is how it began. Zak was drinking, passing urine in vast amounts, easting wasnt increased that much, he wasnt vomiting or anything like that, but I took him to the vet who did his bloods and found his enzymes were up to 795 and they should be between 7 and 173. she gave him Samylin and then took more bloods a while later that month, nothing chanaged, so a MRI scan was done and she found nothing except his enzymes were still up and were at 815. She hasnt said whether it is adrenal or pituitary or not, she did say she didnt think it was anything other than the cortisol in his body. More bloods and another test (eating food and then testing bloods ) which confirmed cushings and they tried Vetoryl 120mg, 1 tablet per day in the morning with food which did not suit at all he was spaced out, so had 7 day rest and put on 60mg, he has been ok but his regular blood test shows something was too low it has at 25 instead of 50 so now we are on the 7 day rest and back on thursday for a 30mg, but since he has been off the tablets he has gone back to what he used to be, his hearing was impaired and he was sleepy all the time, but now he can hear (not perfect he is 12 ) things he missed before....I dont know what other info to give you because I dont have any written info from the vet....It seems to be trial and error to be honest with the tablets. It has taken about 2 and a half moth to get to this point....He didnt show any symptoms at all before the drinking etc, so I just thought it was old age to be honest. His back legs are really weak and I do physiotherapy and heat lamp after a walk on him, just hoping he get some sort of strength back....Zak is (I Think) crossed with German Shepherd and Lab????. (I have put pictures of him in a file, please feel free to look) His weight is 26kg approx I will find out on our next visit.
Hope this helps
Thank you for your lovely welcome. I feel like I have been holding my breath ever since this problem began but now I can breathe normally again since finding this site xx
04-09-2013, 08:03 AM
Welcome to you, and glad you found this forum. You will get tons of help and support on here. I wish you and your baby the best. God Bless You Both.
04-09-2013, 04:48 PM
Hello, me again. :)
at 26kg, he would be 57lbs, recommended dosage is 1mg/1lb. So starting dosage Should have been around say 60mg or even 50, but I understand that is difficult or not possible to get trilostane in England and have to go with the vetoryl dosage as made by Dechra? Well, this is Dechras recommended starting dosage.
Now here is the ticky part, by giving 120mg of vetoryl and causing an Addisons crash, then an ACTH test would need to be done to see where his cortisol levels is at (that might have been what was low) but the thing is that you really shouldn't start him back up till symptoms reappear. It looks like though that the vet then put him on 60mgs which is where normally he would have started. If the cortisol was already too low, it's possible that by then even 60mgs was too much.
I'd want to know if that last test that was 25 and should have been 50 was an ACTH test and if Zak is still low, then there is no need to restart the vetoryl until the cortisol starts to come back up.
Do you have printouts of the test and the results? If so could you possibly post any tests like ACTH, LDDS, UC:CR, and abnormal blood results. This would give us a better idea of which test the vet is responding too.
(i just keep a file and get all test results from my vet now, it's easier and a couple trips to the Vet ER, it saves time and money, of not having to redo something. Also so you can compare numbers and test results yourself and see where Zak is at)
Cushings is Very treatable but it does take a vet who either really knows cushings, or is willing to learn and work with you. It also means, lots of homework for you, since you are Zaks voice and advocate. He depends on you to keep everyone doing what they should do.
Depending on what test results show, I'm not sure that at his point Zak needs to be back on vetoryl or not.
He is a very handsome boy by the way. Love the photos.
Sharlene and Molly Muffin
04-13-2013, 08:24 AM
Been to the vets and his blood result is that his enzymes are too low (think thats what she said?) they should be 50 and they are 25, so have a complete rest until he begins to pass urine and drink alot then its back and go on the 30mg....But he is back to normal, playing and very bright, so when I think he was very tired and slow, even the vet passed comment that he looked brighter and his legs are a tiny bit better. The vet is very helpful, she did want him to go on 90mg when he came off the 120mg, but I didnt want him on that high dose, so I only gave him the 60mg. Ime no vet but my intuition told me that was too much and It proved right. Right at the beginning I asked if he could go onto the 60mg, but she said the manufacturers advice was to begin on 120mg and I thought Oh my god then.....So when we go back I am going to ask if we can go onto 10mg to begin with and if that not enough go up to 15mg and so on, if its in the body it cant be taken out and I dont want him going through this again, It must be awful. I will ask if I can get a print out and compare it myself, but I always feel as if I shouldnt ask, Its as though she will think "What do I know about veterinarian problems, and she wont understand It when I gets It". I know I am paying and I should get a copy of what I pay for, so I will mention it... But its all good news for now..
Thank you for your lovely compliment Molly...... xxx
04-13-2013, 09:40 AM
Sunflower, before you put her back on the med, you must have another ACTH to see where the numbers are then. This is NOT an option - it is required and to start the med without an ACTH is very, very risky. So make sure your vet performs an ACTH before you start the Trilo back again.
Leslie and the gang
04-13-2013, 10:47 AM
Your gut instincts were right on. It was/is too much. Dogs that have hit addisons, can take awhile, if ever for their cortisol to start to rise again. So, that ACTH test is essential. If it is still too low, then giving him vetroyl would put him right back where he was. Definitely stick to a lower dose if you do go back.
Here is the thing. While we have the recommendations of starting vetoryl at the 1lb/1mg ratio, every dog has their own sensitivities to any drug. Some more than others and we have seen, some VERY large dogs and incredibly low dosages of vetoryl doing just find and some tiny dogs on some really high doses. That is why the monitoring is so important too, you never know how sensitive the dog will be and they often forget to put on the glasses and read the textbook. :)
You're doing good, but no starting vetoryl again without a test. He's low now, at the very least the recommendation when a dog goes low is to wait till symptoms start to reappear before starting them again.
Sharlene and Molly Muffin
04-15-2013, 06:51 AM
Yes thats what the vet said, wait until his symptoms appear and then go back....Its so stressful not being sure what the outcome will be and his appetite isnt good , so I am trying him with everything, but he doeant seem hungry and that is worrying me too.
04-15-2013, 07:03 AM
If his hormone levels have dropped too low from the Vetoryl, he may actually need some supplemental medicine in order to temporarily replace them. Prednisone replaces cortisol, and there are other meds that replace aldosterone. If his appetite and other behavior don't quickly normalize, please tell your vet and ask them about hormone supplementation. You can even talk with them today, because dogs with hormone levels that are too low can quickly get into serious problems.
04-15-2013, 08:49 AM
Welcome to the forum. You will get more help and support here for you and your Zak than anywhere else on the planet. The best thing you did was find this forum. I wouldn't jump on getting Zak a buggy just yet. If you let him stop using his muscles they will get worse according to my therapist. You need to keep him going. My Jack Russell Tipper got a little weak in the rear legs at first and I still make her walk a mile every day. I truly believe that is why she is still mobile. I know the muscle wasting is supposed to stop when the cortisol is under control, but I have still noticed some loss on Tipper's one rear leg and she has been controlled for a while now. Whatever you do go to an Internal Medicine Specialist like Valerie suggested. Too little is known by regular Vets about this disease, which can end up being detrimental to your dog. You really need someone who is up on this disease and knows how to treat it. This disease is very tricky, with lots of twists and turns, so trust the people on this forum and they will steer you right. God Bless You and your beloved Zak.
04-15-2013, 11:52 AM
Hello and welcome from me too,:)
You have come to the right place! There is a huge arsenal of K9Cushing's angels to help and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better.
So again welcome to you Zak.:)
Kathy and Buddy:)
04-15-2013, 02:21 PM
We dont have IMS specialist available to us I dont think in this country unless we are referred by our own vet. I will speak to the vet I the morning regarding his appetite, but he will take food from me but wont eat from the bowl on the floor. I managed to get his usual food down and tin of tripe so at least he is eating something. He has been very eager to go for 2 walks today, the vet advice me not to get a buggy yet either so maybe she thinks things will get better. I will certainly ask for a
ACTH test when his symptoms come back and we go back to see the vet. I just hope I am doing all I can and at the moment I am worrying that I am letting thinks go but I know this illness takes time to sort out but I do want it sorted for his sake ASAP....:(
04-15-2013, 02:30 PM
I understand things are differently in the UK with vets. Here we would do the acth test NOW to figure out how low the cortisol is. Then assuming addisons we would wait til symptom returns and REDUCE dosage and monitor very closely.
Please read Marianne's post above regarding the potential need for meds to replace important nutrients missing as a result of low cortisol. This is a MUST read - that is what I would focus on with your vet.
04-15-2013, 05:58 PM
If you do want to see an IMS I found this link
Hope you see some improvement soon
04-16-2013, 05:19 AM
Rang the vet regarding his appetite, she advised chicken with rice today and if he isnt interested then take him in tomorrow and whilst we are there she will do the ATCH test. Whew!!!!! feel a bit better.
Thanks Mel for the Link... I have had a look but its referral only through the vet. But I will mention it to Michelle (the vet) and see if she thinks we should go, but I think she has it under control really.
04-16-2013, 08:31 AM
I hope he's feeling better this morning and is eating well for you.
04-16-2013, 03:40 PM
No worries, good to know for future reference
Did you get an ultrasound done at your vets? I see you had an MRI which found nothing, did they give you a copy of those results.
How has his appetite been today?
04-16-2013, 05:58 PM
Checking in to see how things are going today. Did he eat the chicken and rice?
Sharlene and Molly Muffin
04-17-2013, 12:41 PM
Thanks Molly, Yes he did eat the chicken and rice :)and he ate a little of his usual food later on in the evening:). He is lots better now, he tried running (struggled really) today whilst on the grass and his tail was up, he is his usual self, he isnt on any tablet at all at the moment and up to now his symptoms have not returned,its about 2 weeks since his last tablet, I do hope (if its possible) that his body has been regulated and he doesnt have cushings anymore....Long shot I now but I can but hope!
Hi Mel, yes he did have an Ultrasound scan and they didnt find anything, which was very good news, the vet thought she would find early liver disease but it was fine..
Thank you all for asking xx
04-17-2013, 02:36 PM
So glad to hear that Zak is eating more, so scary when they don't want anything, take care and praying things keep getting better!
04-17-2013, 03:00 PM
Cushings rarely resolves on its own. It's more likely that Zak was approaching Addisons from the overly high dosage and now he's coming back down.
Yeah on the ACTH test! That is key!
04-17-2013, 04:31 PM
Hey again, glad To hear Zak is eating better
If they saw nothing on the MRI nor the Ultrasound, i am wondering how they came up with the cushings diagnosis? The symptoms don't resolve on there own.
Did you ask for copies of the tests? I know they are not that forward with the info over here but given your boy has been on all these doses and gone low. I would urge you to get that info and post it here so the more knowledgeable people can cast their eye
I might be totally wrong but reading through your thread the only thing you said was off was his liver levels, drinking and peeing?
04-18-2013, 11:29 AM
Hi Mel, I think they found out he had cushings when they did the ATCH test. They took blood and then he had food and then 4 hours later they took blood again and when they sent off the results to the Main lab the result was cushings...I hope this doesnt make me sound stupid, but this is all the vet tells me so I can only give you the infomation I am given, sorry
04-18-2013, 11:44 AM
No it makes sense.
Reading back what you said not sure they did the ACTH test right
Here is a link to a mark Peterson article about it (he is renowned in the states) protocol is the same over here
They probably also might have an observation on either the MRI or the ultrasound that they never shared with you to back up the ACTH results.
I would still try to get all that info but I know it can be difficult my vet wasn't that happy about it either. I like the reason about if you were away and needed info
I just want to make sure everything has been covered for your guy since he has had a tough time with the medicine
04-18-2013, 12:34 PM
If I understand correctly, Zak's ACTH test wasn't done according to protocol. I called Dechra ( the manufacturer of Vetoryl - brand name for Trilostane) I was told this:
1. Trilostane must be administered with food for proper absorption.
2. ATCH testing - No fast- Meal with medication - a smaller meal is warranted if the animal tends to get carsick. Test must be
started within a 4-6 hours of dosage, but doesn't have to be completed by
Vets often want to do several tests at once therefore requiring a
Fast. In that case it is advisable to do the ACTH test at a different time.
Feel free to contact Dechra directly. They were very helpful to me.
Kathy and Buddy:)
04-18-2013, 04:17 PM
None of us are vets and we trust they know what they are doing but every so often a thread pops up here where they are wrong which is why I asked a couple more questions.
Thinking about this, I don't know if the diagnostic ACTH has to be before or after food as medicine would be injected for the simulation but vetoryl would not yet be prescribed
One of our other more knowledgable members would know.
I am sure we did one as well before starting the medicine it was 3 years ago now hence why I don't remember the food bit
04-18-2013, 06:57 PM
If I remember correctly, Molly wasn't fasted for her ACTH. That was in fact why they did the ACTH and not the LDDS because I'd given her breakfast that day.
Sharlene and Molly Muffin
04-20-2013, 01:17 AM
Just wondering how you both are?
Hope everything is ok, post when you can.
05-02-2013, 10:26 AM
Hi all, Things have changed a little, he has been off the tablets for 4 weeks due to him being given too high a dose. His symptoms have not returned and I was wondering if this is normal or just good luck. I am a bit worried because the insurance has gone up to £104.00 per month from £63 and things havent been sorted at the vets, I spoke to her this morning regarding the cost and we are looking at £200 per month to get things regulated. But he is doing very well, walking, not eating that good but still hasnt lost weight, playing. back to his old self. I would have thought his symptoms would have returned before now!!!
05-02-2013, 10:33 AM
MODERATOR NOTE: I have merged your post about the lack of signs into Zak'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!
05-02-2013, 10:55 AM
ok thank you
05-02-2013, 12:29 PM
Glad to hear you are both doing ok
Can you help us understand how you got to where you are now, did the vet give you any additional information regarding the diagnostic testing and the blood tests since?
Also what is the 200 quid a month for? Just want to make sure your not getting ripped off....
Ps your boy is very handsome, love his ears :)
05-02-2013, 03:27 PM
We have a member whose dog has not had to take Trilostane for a year now. So it may take some time before clinical symptoms are seen.
Did the vet ever do an ACTH stim test to see how low Zak's cortisol dropped? It could be that Zak needs prednisone because his adrenals are not making enough cortisol. Too low cortisol will make a dog inappetent. Also, were his electrolytes checked?
It is good to hear from you and we do hope you come back to update us as soon as you can.
Love and hugs, Lori
05-03-2013, 07:43 AM
I am going to ring the insurance now to ask questions about cancelling
05-03-2013, 07:46 AM
Hi mel, the £200 is per month for the next 3 month that I will have to pay the vet if I decide to cancel the insurance, that is how much it may cost for his bloods and tablets if his symptoms begin again and it will take 3 month to come to some sort of result then its £120 per month for the rest of his life for his previcox for his arthritis and his tablets for cushings.... but I have spoken to the insurance and been told as soon as i make any claim in the next 12 month I am bound into the "contract" so I am worried incase his symptoms begin again and Ime stuck and I cant afford it. The insurance compnies are not very nice...... I didnt get any information only that his level was 25 instead of 50, so stop the tablets until his symptoms return which they havent.
Hi Lori, No the vet hasnt done the ATCH test, she said if his symptoms return then she will do one and start the process all over again. I did mention he wasnt eating, but he isnt too bad now, maybe a bit choosy he will eat chicken and eggs and sardines, but I have had to change his dog food and he isnt losing weight so thats good, his electrolyes havent been checked.
05-03-2013, 10:25 AM
It sounds like you have an annual policy which has a set amount allocated to it for the year? Usually it's around 6k. One it has been diagnosed they class it as a Pre existing condition and can be right pains
I think she did one ACTH as the numbers 25 and 50 sound like the Pre and post nmol amounts.
I have to be honest and say I still am not sure about his diagnosis. Nothing was reported on either the MRI or ultrasound and the vet explained it to you as he had more cortisol in his body? There is usually an adrenal mass or pitutary mass which would have shown up on either of those tests.
If I were you before I spent any more money with this vet, I would ask her to explain to me again how they got to the diagnosis. There's lots of links in the useful info section you can read if that helps
Hang In there, the main thing is that Zak is doing ok at this time.
05-04-2013, 07:40 AM
AW thanks Mel, I have been considering another vet, even though this one seems ok, I dont understand the ins and outs of cushings and I wonder how much she does too. But yes zak is holding his own this gives me time to save rather than use the insurance. Let you all know how things go in the next few weeks, thanks again. Christina xx
05-12-2013, 09:26 AM
Just wondering how you and Zak are doing??
Hope you are well and having lots of good days
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