Can anyone help my Jesse

[Betty1973]

Hi, my name is Betty and my ShihTzu mix is Jesse. He is 5yrs old and based on bilateral adrenal gland enlargement, a diagnosis of pituitary dependent hyperadrenocorticism was made approx. 1 month ago. He has been on Trilostane for 3 weeks. He receives 0.5ml twice a day. Now for a bit of history on my baby. He started with the symptoms about a year ago. We especially noticed the excessive panting and what we thought was weight gain. He was taken to the vet several times and we were told he was just overweight. About 4 months ago, my groomer suggested I bring him to her vet. She noticed the pot belly and insisted something was very wrong. Dr Reed did x-rays and diagnoised him with CHF. This was devestating. He was immediately put on Laxis 4 per day, Anailpryl 1 per day and dioxgin 1 per day. The first couple of weeks he was much better. He had lost some weight was breathing good and we were thrilled. Pretty soon he was back to the old symptoms. I took him to the vet several times. They increased the meds, gave him Lasix injections but nothing worked. I was so frustrated. Finally my groomer, Sherry, suggested I take him to a sepecialist. The specialist immediately took him off all of the meds and put him on Hill r/d prescription diet. She would begin the tests in 2 weeks when all the of meds were out of system. She, at that time suspected Cushings. He was 29lbs at that time. For the next 2 weeks he did wonderful. He lost 4.5 lbs, was not panting, taking long walks etc. Again, we were thrilled. He went back for all of the Cushings tests which took 2 visits and the diagnosis was made. Now, it has been 3 weeks and he is worse then ever. His belly is huge, his panting is horrible. He is still ravenous, and drinks alot. I am at a loss. I called the specialist yesterday and gave them his symptoms thinking we may need to adjust the meds. They said it had nothing to do with the Trilostane and to call my regular vet.
I was shocked. Do they not want to hep me anymore. I have spent $1500.00 in the last months on tests. I don't know what else to do. Can anyone give me any advice. My poor baby is suffering.
Thank you so much.

[addy]

Oh Betty, I am so sorry you have had such a time of it with Jesse. Do you have copies of any of the Cushing tests? If so could you tell us the tests and the results? Did the specialist say the CHF was an incorrect diagnosis? Could you post the results of any blood work listing any abnormal values and what the normal values range should be?

Others will be along soon to try to help sort things out. Be patient.

I am so glad you found your way here. We will try to help any way we can.

Hugs,
Addy

[Betty1973]

Thank you for your quick response. He is panting as we speak, poor baby. Anyway, yes the specialist said he does not have CHF. As far as all of his testing I do have a letter which I can send. Can I send this as an attachment somehow?

[frijole]

Welcome! I am confused as to which doc said what. :o Your regular vet diagnosed Jesse with cushings and you were on trilo and then a specialist said it was CHF and took him off the trilo? Was he doing better on the trilo or on the heart meds? Sorry but if you could clarify it would help me... and maybe others... to help you.

About cushing's... heart issues often result due to the panting which is caused by excess cortisol. Most cushing's dogs pant until treated. Maybe that is all that is wrong... what testing did the specialist do to come up with CHF?

Don't worry.. lots of experience on this board. We'll do our best. Hang in there.. share as much as you can. Hugs to Jesse. Kim

[Betty1973]

Hi, I am sorry to be so confusing. My regular Vet diagnosed him with CHF after bloodwork and x-rays. He did good on the heart meds the 1st few weeks and then all the symptoms came back. I then took him to the Specialist who determined it was Cushings. She took him off all of the heart meds immediately and put him on the Hills r/d diet. After all of the extensive tests he was put on Trilostane. He has been on this for almost 3 weeks now. Bottom line is he seems to do better when he is not taking any meds. Thats why I am so confused.

[frijole]

Wow.. why would the specialist just shrug you off like that.. I am shocked.

OK so you are on a dose of 0.5 mgs twice a day. How much does your dog weigh? Are the symptoms the same as when you started? If not then the dose is too low most likely. Did this "specialist" that didn't make you feel special ;) say anything about doing a follow up acth test to see if the trilostane dosage was working? Cuz that is what they are supposed to do! You should test and that will tell you if the cortisol is still high.

Can we go back to the original dx by the specialist? What test or tests were done to dx cushings? Did they do an ultrasound? Blood panel? Please post any test results you have and if you don't have them I would go get copies and post them... it will really help us.

It's a bit strange that the specialist is dosing twice a day... I believe most trilo dogs start out with once a day dosing. Sorry to hit you with a bunch of questions but it's just so I and others can get a better idea of your whole story. Thanks for sharing. Kim

[frijole]

p.s. Is Jesse overweight as in obese? I am trying to understand why the Hills RD diet. Cush dogs are very sensitive to fat so you want a low fat but a high protein diet. Any good quality dog food works and I'm not familiar with RD but I've just never seen a vet prescribe this food for a dog with cushings.

[Betty1973]

Jess was 29lbs when he went to the Specialist for the initial visit. She put him on Hills at that time. He was to get nothing but 1/2 can twice a day with greens beans as a filler and carrots as a treat. He did lose 4.5lbs on this diet. ( He is still on the Hills as of today.)On the 1st visit she did the echogram and Ultrasound. Then he went back for the 8 hour bloodwork which determined the Cushings. He is on a liquid trilostane. I think she chose this route as it less expensive. I am getting the meds from Roadrunner Pharmacy in AZ. I think I will call them back tomorrow. The poor guy is miserable and something has to be done. He can't continue to suffer like this. it is breaking my heart. it was horrible when they dx him with CHF and he didn't even have it. The vet asked me at that point if I wanted to put him down. I have had Jess since he was 6 weeks and putting him down is not an option. My husband has been laid off since Sept. and I had to take early retirement due to downsizing and I will spend my last dollar trying to save my baby boy!! I really appreciate the support. Our family has been through alot in the past months and I am so glad I found this forum. My heart goes out to everyone who posts and prays on here. I can certainly feel your pain.

As soon as I figure out how to attach I will send all of his results.

Thank you again.

[frijole]

I'm not sure if the liquid version is different but that dose seems really really low which might be why you have seen no change. That is why I asked the weight.. I believe that Dechra (manufacturer) recommends 1 mg per kg of weight daily. So if she lost weight and is at 25 lbs she is 11.3 kgs. That would mean she should have started at 11 mgs of trilo daily and their site does say once daily dosing.

You can find all of this in our resource section. I used lysodren so I am no expert on this drug... I just learned from reading other's experiences.

My heart goes out to you as you clearly love dear Jesse and are being a great advocate. I had one dog with cushing's and found this site then 5 yrs later my other dog was diagnosed (wrongly) with cushings and ended up she has a very rare adrenal tumor. I went thru "vet hell" and fired 5 if them. :D Ended up going 5 hrs each way to Kansas State University where they diagnosed her.

Alot of vets don't have experience with heart and endocrine issues and some refer to specialists and others take a stab at it and throw out some rx's hoping you pay the bill and go away. Sad really... anyway.. I'm just shocked the specialist hasn't suggested you have a follow up acth test. That is the test that measure cortisol and tells you how the trilostane is working. Are there any other specialists in your area? A teaching school?

Hang in there... Kim

PS I noted you are giving 0.5 ml and since we can't convert ml to mgs I am at a loss. I'm unsure what the recommended dosage is for liquid trilo.. we rarely see it.

[StarDeb55]

Welcome to you & Jesse! I have had Shih Tzus or Tzu mixes for about 20 years, so they have a special place in my heart. The others have given you a good start. The one thing we do need to know about Jesse's trilostane dose is the concentration of the liquid trilostane. He is on 0.5 ml., twice daily, but the liquid will have a concentration of something like 50 mg/ml, 100 mg/ml, or something like that. We need the concentration to be able to determine the exact amount of trilo that Jesse is getting daily.

Debbie

[Betty1973]

I just saw that I do not have rights for attachments. I do not know why not. So I will handtype all of his results tomorrow. Good night everyone !!!

[frijole]

Welcome to you & Jesse! I have had Shih Tzus or Tzu mixes for about 20 years, so they have a special place in my heart. The others have given you a good start. The one thing we do need to know about Jesse's trilostane dose is the concentration of the liquid trilostane. He is on 0.5 ml., twice daily, but the liquid will have a concentration of something like 50 mg/ml, 100 mg/ml, or something like that. We need the concentration to be able to determine the exact amount of trilo that Jesse is getting daily.

Debbie

:D:D:D:D Yeah! Deb I knew you could help!!! Thanks.

[Betty1973]

Hi, I dont know if this helps but the bottle says 36 mg/ml Suspension.
He is going for his ACTH stimulation at 330pm today. I will keep everyone posted with the results.
Thanks !!!

[Jenny & Judi in MN]

good luck Betty. How long is he going to be there? When Jenny has the ACTH it is 4 hours.

[Betty1973]

Nothing is easy. They called me 1/2 hour ago and said they were not sure if they had the I beleive she said cortisol?. Anyway they are calling me back. She did say he wud need to be there a few hours, so I don't think it will happen today. Jesse is doing pretty good today, not too much panting.

[Betty1973]

After a lengthy conversation with the Vet, Jesse will go in at 1100am tomorrow. They said it wud take about 2 1/2 hours for the test. The Vet did consult with VSS so everthing should be all sorted out. I was a bit hestitant at first. I will post results when they arrive which I think will be a couple of days, so I am sure it will be next week. The Vet did say he thought the dosage of Trilostane that Jess is taking now was low. Have a good weekend everyone and thanks again for the support.

[frijole]

Glad you are getting the test! They must not treat very many cushing's dogs if they didn't have the cortysyn on hand. BTW it is very expensive and that is why the tests are not cheap. Keep us posted when you get the results. we are glad to help any way that we can. Take care, Kim

[Betty1973]

Hi Everyone, well Jesse had his ACTH stem test. My Vet did fax the results to the Specialist but was kind enough to call me and say that the levels were within the acceptable range. I won't know the actual results until tomorrow. He did raise the dosage from 0.5 to 0.6 for now. Jesse seems to be a little more perky. Today he was in the yard and I saw him on his back rolling around. Now Jesse has not been able to get on his back for months. I was terrifed and ran to him. Well, he jumped right up and looked at me like "what mom?" Then he did it again, so that is a very good thing. His belly is still big and he is still ravenous but I'm hoping the increase in meds will help him. Thanks again for all of the support. I will keep you posted.

Betty & Jesse

[frijole]

Yes, please do get and post the results because I want to make sure I know what acceptable means. :) It doesn't make sense to raise the dosage if it was acceptable. Don't worry... just post the results and then we'll offer our feedback. Relieved you got the test done. Thanks!!! Kim

[Squirt's Mom]

Hi Betty,

At .6ml of liquid Trilo at 36mg/ml, Jesse is getting 21.6mg of Trilo per dose (36 / .6 = 21.6). Jesse weighs around 24.5lbs now, if I have followed his history correctly ;), so this is just under 1mg/lb which is a conservative dose - which is a good way to go with Trilo. ;) You should start seeing more of your old Jesse now, like the rolling....which I know did your heart good after the panic passed. :p Don't be surprised if the dose needs to be bumped up a bit, tho. It can sometimes take a bit of tweaking to get the Trilo dose just right.

You are doing a great job, Mom, so keep up the good work!

Hugs,
Leslie and the gang

[Betty1973]

Thank you so much for the encouraging words. He seems to be doing pretty good today. I will post as soon I get the results.

[Betty1973]

Hi everyone, I have been finally able to get back on here. Jesse is not doing good, but not doing bad. I do not see any improvement in the almost 60 days he has been on the trilostane. I do have his results. Im not sure what you need but this it what it says:
Coritosol Serial 2 (ATCH)
Time 1 1110
Time 2 1210
Cortisol sample 1 5.0
Cortisol sample 2 8.3

They did not change his dosage.
For the past 3 days he has had a big issue with not being able to breath through his nose and his nose is running very bad. Poor guy. Can I give him something, maybe benedryl? He has had this in the past.
One good thing is he did not finish his dinner last night and did not eat much of his breakfast this morning. I'm hoping some of the ravenous appetite issues are going away, then it can also be because I changed his food to Science Diet. Right now he is so miserable with the nose issues. I don't know what to do for the poor little man. Any advice will be greatly appreciated.

Thank you so much.
Betty & Jesse

[frijole]

Hello! I'm surprised they didn't increase the dosage .... what were the numbers the last time you did the test?

My vet gave my dog a benedryl shot so I know you can use benedryl... I just can't give you a recommended dosage. If Jesse is that miserable they should be doing something. Did they say why they chose not to?

Kim