Gypsy the Bedlington Terrier

[Bedlington Mum]

Hi everyone,
My name is Anthea and my sweet little Bedlington Terrier Gypsy (6 years old, nearly 7) has been diagnosed with Cushing's last week. I have been so overwhelmed (like I know so many other people new to this forum are) with this diagnosis. There is so much scary information on the Internet regarding Cushing's and then I came across this wonderful forum and it has made me feel a little less lost already, though am still terrified of losing my baby girl.

I messaged Fraser's Mum, Naomi as I noticed she lives in Perth, Western Australia, where I live too, and was given some very helpful information regarding a local specialist vet, I hope to take Gypsy to. Naomi was so helpful and lovely. Thank you again Naomi if you are reading this post, and I hope you are feeling okay.

Gypsy symptoms are increased thirst, increased appetite( huge difference, before she never was never very food driven ), lots of warts and bumps appearing on her skin and a pot belly. I took her to the Vet who suspected Cushings. He did some tests and she had a urinary tract infection, her ALKP was 328u/l, ALT was 126u/l which he said were both raised. The LDDST was performed and came back inconclusive, the first reading of Cortisol was 60.7nmol/L, second 67.6nmol/L and last 32.3nmol/L. He advised rechecking in a few months. Gypsy last week was this time given the ATCH Stimulation test and her results were, first 98.2nmolL and the final was 971nmol/L which he said was an exaggerated response so he was confident Gypsy has Cushing's.

The Vet has prescribed Gypsy 45mg of trilostane once a day,that I have just received from a Compounded Chemist sent from the East Coast of Australia. Does this sound like the correct dosage? I have read that it is better to start with a low dose. I am so worried about Gypsy having the medication, the side effects sound terrifying! I forgot to mention Gypsy now weighs 11.4 kg ( she has gained 1.4kg ) in the last few months as she is always seems so starving and I am feeding her a bit more.

I was also concerned as my current Vet told me that Trilostane is completely safe and I didn't have to worry at all. He told me to give Gypsy the medication( I have a bottle of 100 ) and that's it! I just get the repeat scripts through the surgery. He made no mention of coming back for any tests to monitor her levels! So after reading through this forum, I got very nervous with his instructions. Is this because he doesn't know much about treating Cushing's?

Any advice and thoughts on what everyone thinks about Gypsy's results would be wonderful. Also as to whether the 45mg if trilostane sounds too much for an 11kg weight?

Thanks everyone,

Anthea

[Roxee's Dad]

Hi Anthea and welcome to you and Gypsy,

Just a couple of conversions here to make it easier for many of our members to relate.


ATCH Stimulation test and her results were, first 98.2nmolL and the final was 971nmol/L which he said was an exaggerated response so he was confident Gypsy has Cushing's.

98.2nmolL = 3.56 ug/dl
971nmol/L = 35.2 ug/dl

Gypsy weight 11.4 kg = 25.1 pounds

The 45 mg of Trilo may be just a bit higher than I would want to start off with. Dechra does recommend starting off at the lower range which would be 1 mg per pound so at 25 pounds, I would be at about 30 ish mg of Trilo.

Gypsy will need to be tested 10 to 14 days after her first dose. And yes, we do have to watch out for symptoms of her cortisol going too low, like loss of appetite, lethargy, vomiting, diarrhea. I am afraid your vet is not well versed in cushings treatment at all :(

I have to run out for now but many more will be by to welcome you and share their experiences and knowledge.

[Roxee's Dad]

Before I run off here are a few links that would be good information to have in your arsenal :) You are Gypsy's only voice and advocate, so the more you know, the better you can protect her. ;)

Trilstane (Dechra) dosing protocol
http://www.dechra-us.com/Cushings-Syndrome/Veterinarians/Prescribing-VETORYL-1.aspx

Dechra's Learning center:
http://www.dechrace.com/vetoryl-brochures.shtml

[goldengirl88]

Anthea:
Welcome to you and your baby Gypsy. Please do not start Gypsy on that dosage, it is way too high. You should be starting her at 20mg. I would go no higher or you are asking for trouble. I know this from experience. The lower you start the dog the better, as it 's body can get used to the drug. The higher you start you run the risk of Addisons, which is very bad and can be deadly. I would rather see a low start and gradual increase to where the dogs cortisol is controlled. These dogs cortisol can plummet and cause them to be overdosed. Do you have prednisone? If not please go to the vets and get some asap. You will need it in case of any problems with low cortisol. If you have to use it you then need to take the dog to the vets immediately to have the electrolytes etc. checked. If you start low and are careful watching for vomiting, diarrhea , or lethargy your dog will do well. I wish you much luck, and blessings.
Patti

[SoggyDoggy]

Hi Anthea, was hoping you'd post so I could know how you are doing. Have you managed to get the referral to PVS? An appt there will set your mind at ease for sure.

Reading through your post though, I have to wonder why your vet got the trilo compounded and sent across from the east when there are compounding pharmacies here that do it? Also, how much did you pay for the bottle of 100 caps? I ask cause a lot of vets here put there own dispensing fee markup on things and you can get charged higher than if you go pick them up direct from the pharmacy. Worth looking into, I got mine in Os Pk if that helps.

I do think that 45mg sounds a bit too high for a starting dose too, but I am super cautious these days because of what Fraser went through, but for the vet to say they are safe and just get a refill without a repeat ACTH is a flag waver. If you are happy with them as vets otherwise, stay there as a client but go to PVS to manage the cushings. That's what I did with Fraser and I felt so much better about it. It's kind of like the difference of going to your GP for chemotherapy or something. Why would you if there is a specialist on hand so close? And as I said in the PM, dollar for dollar it worked out cheaper for me in the long run to deal direct with a specialist, and they are super helpful over the phone if you need anything.

Must run now, have to get going for work but keep in touch, would love to hear how Gypsy and you are doing.

[Bedlington Mum]

Thank you so much John (Roxee's Dad), Tipper's Mum and Naomi for your posts. I had to get my non fur babies off to school, so couldn't reply earlier.

I have read through those info links John, thanks for those very informative links.

I don't understand why my Vet didn't start at the lower end of the scale for dosing Gypsy, when in all the information regarding trilostane said to start to conservative and work up? He said he was used to treating Cushing's with Mitotane and Trilostane was fairly new. I wonder if Gypsy is the first dog he has treated used trilostane? I am not feeling confident at all, when everyone here says that 45mg is too high and start low.

I agree Naomi, huge red flag that he also hasn't advised me to retest Gypsy with ACTH test in 10 days time! In fact no mention at all any tests! I actually asked specifically too whether I need to be careful and watch out for any signs and he said "No,that trilostane was perfectly safe " and that I must have been reading about Mitotane, that has to be monitored.

The tablets cost me $216 for 100 of them at 45mg, I have no idea if that is a good price here in Perth? Naomi, did you find the Chemist in Osborne Park reasonably priced? I don't know why he got the tablets sent from over East, if I can get them filled locally either??

I also don't have any prednisone for Gypsy either. Is that something else my Vet should have given me to have for Gypsy? Tipper's Mum, thanks for letting me know about that.

Wow, my Vet sounds like he doesn't know much about the complex nature of treating Cushing's at all! I am not giving Gypsy one tablet until I get that referral to Specialist. If she starts Gypsy on a lower dose, does anyone know if I can use the 45mg trilostane and get them changed at a compounding Chemist?

Sorry to keep asking questions, but Gypsy doesn't have any hair loss or weakness in limbs as I have read Cushing's dogs usually display, is that normal not to have those symptoms? Due to the absence of these sypmtoms, could it mean she may have something else causing her Cortisol levels to be high instead of Cushing's???

Thanks again in advance for all your help.

Anthea :-)

[Roxee's Dad]

The LDDST was performed and came back inconclusive, the first reading of Cortisol was 60.7nmol/L, second 67.6nmol/L and last 32.3nmol/L. He advised rechecking in a few months

60.7nmol/L = 2.20 ug/dl
67.6nmol/L = 2.45 ug/dl
32.3nmol/L = 1.70 ug/dl

I have to say I am not totally convinced that it is cushings although it very well could be. Cushings is difficult to diagnose and no one test can be trusted. Many of us have had a High definition Ultra Sound to take a look around and view the adrenal glands which may reveal themselves as being plump from overworking at producing excessive cortisol. Maybe even consider a repeat LDDS. Another less expensive test is a UC/CR (urine test) it cannot confirm cushings but can rule it out.

I am sure more of our members will chime in here as that LDDS result does concern me.

[Bedlington Mum]

Yes, I thought that the LDDST was supposed to be better at diagnosing Cushing's than the ACTH, so was confused as to why my Vet said to do that test instead of the more accurate one. It was around 3 months when he did the ACTH after the initial LDDST, and he said Gypsy's results were so high that he felt it was Cushing's.

Do you know why the ATCH test would have been so high while the LDDST test earlier had nothing conclusive? Could the Cushing's disease have progressed that much in just a few months to have such high levels of Cortisol?

The other thing is poor Gypsy is so stressed when she has to go to the Vet andin particular when she has to stay there for doing tests, that they said she barked the whole time there. At home Gypsy is the world's most silent dog, is so rare for her to bark, even when stranger's come to the door. Gypsy would have been frantic when these tests were taken and I thought this would interfere perhaps with the results?? Could the ACTH been so high because she was so scared??

[frijole]

It is actually a good thing that you had both tests done because while the LDDS test is often called the 'gold standard' for diagnosing cushings it can result in false positives when other illnesses are present. The acth is indicative of cushings. That and the symptoms you mentioned make me believe the diagnosis is accurate.

That said the dose is on the high side of where vets in the US are starting - there are different schools of thought but most have reverted to lower dosing to start with as they have found it is easier to go up then to go down.

If you are uncomfortable you could discuss this as well as follow up testing with your vet. Kim

[molly muffin]

Hello and welcome to the forum. I would take the test results and go see the specialist that Naomi recommended.
yes, it is possible that a compounding pharmacy would be able to break down the pills you have already purchased into a smaller amount if you aren't comfortable with the 45mg. I am more on the side of start low and go up as needed. You know based upon ACTH testing going forward as to what you adjustments you need to make if any.
I'm so glad you touched base with Naomi and she was able to point you towards the specialist she used for Frasier.

Welcome again,
Sharlene and Molly Muffin
So,

[Bedlington Mum]

Thank you for the welcome and the advice from everyone.

I will insist I want Gypsy to have the lower dose to begin with,and like everyone has advised get follow up ACTH done and take it from there.

Also am trying to get a referral from my existing Vet organized to be able to see the wonderful specialist Naomi saw with her beautiful boy.
As I have lost confidence in my Vet concerning Cushings after reading everything on here, I will only take Gypsy to existing Vet for normal check ups, vaccinations etc but hope to have Gypsy's Cushing disease treated and monitored by the specialist.

Thanks again everyone, hope you and your beloved babies are all well.

Will keep you posted how my trip to Specialist goes with Gypsy.

Anthea

[doxiesrock912]

Anthea

This is what we do and it's been working well. Regular vet for checkups. IMS specialist for Fishing's.

[SoggyDoggy]

HeyAnthea, firstly yes the chemist I went to will re compound the pills if you want, but you can't guarantee the exact dose afterwards at the caps also will have filler in them. That and the fact that it was going to work out roughly the same to buy new ones as it was to have he recompounded, and I was going from 60mg to 10mg! In addition, I think you might be able to save roughly half of what you paid for the pills by compounding locally.

If you want to go the ultra sound route, which I wish I had done sooner personally, again PVS do that with specialist radiographers as well. They are Perth Vet Specialists for a reason.

Fraser was also a nervous bug at the vet, he would start trembling before we even got out of the car in the car park, but never had the anxiety at PVS. It's just different in every way. The consult rooms are just that, any treatments happen out the back so that sense of anxiety isn't an issue and when I had to leave Fraser for his ACTH tests, I always knew he was in the best possible care and that there was always staff checking on and playing with him. He used t get lots of cuddles there too. I can't talk them up enough.

Your vet should just be able to fax a referral through directly to them and send the files accross directly, mine did and that was fine, was easier for me that way too as I just rang and made the appointment. My mistake was I didnt question the diagnosis I just went with it so we started way too high in dosing (60mg for a 9.9kg (20pound) dog. We had issues obviously, but I knew something was wrong before it wen to far, and disobeyed my vets instructions, stopping cold. It was then I got the referral and was pointed in the right direction. Wish I had done it first.

So hope that helps a bit, good luck.

[Bedlington Mum]

Thanks Naomi again for advice regarding getting the tablets reduced down at the local Compounding chemist. Sounds like a much better idea to get them locally then sent from the other side of the country which my Vet did! A much cheaper and quicker option.

PVS sound so wonderful. This is going to sound strange but I am almost excited to take Gypsy to them to know she will be so well cared for with the best in the field. I have been so scared about what will happen to her once she starts the trilostane, but with having the specialist and everyone here taking care of her, I am feeling much better already and hopeful.

Take care everyone.

Anthea

[goldengirl88]

Anthea:
I am so glad everyone has helped you. Please don't forget to go get the prednisone. You must have it on hand when using Trilostane. You will have to make a decision on your vet. He does not seem like he has treated Cushings and is irresponsible for giving you trilostane with no prednisone. If you feel comfortable enough finding things out on here and telling him what to do and how to do it that may be an option, but you need to be confident you know enough for your dogs sake. Otherwise I would find a Dr. that has treated and understands this disease. My vet was clueless also, but he is willing to let me tell him what needs done and how to do it, and he is the best of the crappy vets around here. You are the best advocate for your baby so only trust yourself. This forum will help you thru it all so do not worry it will be ok. If you start low, do the testing when needed, get the testing done within the correct time frame, and the vet uses the correct protocol you will be ok. Make sure you never fast your dog before the ACTH test!!!!! It will skew the test and overdose the dog. You are doing a good job already by looking into all this stuff. We are here for you. Blessings
Patti

[Bedlington Mum]

Thank you so much Patti (Tipper's Mom) for the advice, will make sure that I get the prednisone along with the lower dose Trilostane from the new Vet.

I have an appt for Gypsy with the Internal Medicine Specialist on Friday morning who was recommended by Naomi from this forum, and feel so relieved to be able to have Gypsy treated by a Vet so experienced with Cushing's. Our current vet practice tried to say it was unnecessary for Gypsy to see a Specialist,but after we said that we have been researching about Trilostane and Cushing's, and we weren't comfortable with dosage prescribed to Gypsy and the lack of info provided to us with her ongoing treatment and side effects they didn't argue further. I am feeling very positive about appt on Friday morning.

I will remember not to fast Gypsy before her ACTH test. I had no idea that it caused results to be off! My old vet told me to fast her! Poor Gypsy was starving on the morning of test!

Will let you all know what the Specialist says on Friday after Gypsy's appointment.

Anthea :-)

[Trish]

Naomi is a star! So if she had recommended them they will be stellar :D Good luck for Friday and getting Gypsy sorted out!!

Trish xx (a Kiwi across the ditch!)

[Bedlington Mum]

Thanks Trish!!! Xx

[SoggyDoggy]

Great news on the appointment!

Advice now would be to make a list of all the things you want to ask or talk about while you are there, as she will ask you a whole pile of questions and get a full background history. She will probably ask you what symptoms you saw that led to the testing, how Gypsys demeanor is etc and with luck if your vet has sent through the blood test results, she would have already looked through them to get the background story. And if you fasted Gypsy on the morning of the ACTH, be sure to mention that too.

They may or may not want to repeat some tests if there is question on the diagnosis, but if there is any doubt in your mind about the diagnosis, be sure to talk to her about it and ask her opinion. She will be very straight forward with you, steer you in the right direction and you will leave feeling both overwhelmed and reassured. Overwhelmed because you will feel so much better and will have so much information and reassured because you are now dealing with someone who really knows what they are talking about.

I'm really happy you got the appointment and look forward to hearing about how it goes.

[goldengirl88]

Anthea:
I am very happy that Naomi was able to recommend someone for you. You are on the right track now, and I am sure things are going to be looking up for you and Gypsy. It is always nice to hear how members are able to make a difference in other's lives. We will be waiting to hear a good report. Blessings
Patti

[Bedlington Mum]

Thanks Naomi and Patti.

Am so relieved we managed to get in so quickly to see her, two more sleeps!

Am going to sit down and write myself that list Naomi to take with me on Friday that you suggested. Great idea! Otherwise, I know I will forget all the things I want to say the minute I walk through her door, when I'm feeling bit overwhelmed. I can't thank you enough for all your support.

Will let you know how we go as soon as we get back.

Anthea x

[Squirt's Mom]

It helps me to take notes when talking with the vets as I can't remember anything once I walk out the door! :p My vet in TN that diagnosed Squirt with Cushing's was used to seeing me walk in with my notebook in hand. I have also taken friends with me so there is another pair of ears to listen that aren't as emotionally involved as I am. And I have used a tape recorder before. Do what you need to get the answers to your questions... and remember them! :D

[doxiesrock912]

Anthea, bring a voice recorder so that you can listen to the conversation again later.

[Bedlington Mum]

Thanks Squirt's Mom and Valerie, great idea! :)

[goldengirl88]

Anthea:
I like that recorder idea so you do not forget anything which is so important as you have so much on your mind to ask about. Blessings
Patti

[SoggyDoggy]

Just checking in to see how you went?

[spdd]

Good luck today !!

[goldengirl88]

Just checking in to let you know we are there with you in spirit for the vet visit. Let us know what happens as we are all awaiting the results. Blessings
Patti

[Trish]

HI Anthea, hope all went well at the vet for Gypsy on Friday! Hope you have a plan of action in place and will be seeing improvements soon! :)

[goldengirl88]

Anthea:
Eagerly awaiting any news from your vet visit with Gypsy. Hope all went well, and you are able to figure things out on what to do. Blessings
Patti

[SoggyDoggy]

Hey Anthea,

Haven't heard back from you, hope trip to IMS went well, let us know, I'm anxious to hear what they said!

Otherwise hope you and Gypsy both are well.

[goldengirl88]

Hope everything went well on you IMS visit, you kind of disappeared and I was wondering how things went?? Blessings.
Patti