7 yr old Golden Retriever Joey, Newly Diagnosed

[JoeyRetriever]

Hi All!
I'm Kelly from Alberta, Canada. My 7 yr old Golden Retriever Joey was just diagnosed with Adrenal Cushings. We're starting Lysodren today.

The last 4 weeks have been a rollercoaster ride. Counting today's visit Joey has had 12 Vet visits within 3 1/2 weeks and the bills are enormous. (Vets in Canada charge about double to the vets in the US). Joey had a seizure out of the blue on May 30th, followed by 3 more since. The most recent was 2 days ago right in the waiting room at the Vet's office. He's on Phenobarb x 2.5 weeks now. Personally I'm wondering if he's one of those rare cases who has both pituitary and adrenal Cushings because of his seizure symptoms. Our regular vet said they thought he had a brain tumor and cancer in his abdomen and to prepare for the worst so I took him for a second opinion.

The new Vet's Digial Xrays and Ultrasound showed no visible tumors in his brain or abdomen but he has a very enlarged heart on the right side. Prior to taking him to the new Vet I did some research online into causes of seizures and one thing led to another and I found info regarding Cushings. Joey has about half of the symptoms so when I took him to the new vet, I asked them to test for Cushings. He had ACTH and then Low Dose Dex Suppression tests, followed by another cortisol level today (which was high). I don't have the numbers as the Vet just read me the results and I didn't write anything down. Joey has a full thick coat but sheds a lot, drinking water in excess and loves to eat and is 15 lbs overweight, lethargic at times, tires easily,weak in his hind end, he looks older than he is. He was also born with hip displaysia and had double hip surgery as a 6 month old pup. He goes lame if he runs much but can tolerate walking, yet recently just going around the block was too much some days for him. Now between the Cushings and seizures and enlarged heart, he is worn out and just flops himself down to rest at every chance he has. No personality changes. He's a super sweet dog, cooperative with anything the vet does to him and still carries a toy in his mouth all the time. He still will play with my other younger Golden, greet my old Greyhound and licks the cat's faces and follows me everywhere like Velcro. I love all my dogs but this guy is my buddy.

I did ask the vet about the possibility of surgery but he said it was very complicated surgery, done by a specialist and because of Joey's enlarged heart and seizures it wouldn't be a good idea. That he wants to try the Lysodren first. Regarding the Lysodren, he isn't using a high loading dose to start. He feels Joey's Cushings is not very advanced yet based on his ACTH and Low Dex tests that were elevated but not hugely out of range. So the Lysodren being prescribed is daily for a week, then an ACTH test in 7 days, then if that is better he'll be put on Lysodren a couple of times a week. I was very happy to find your group online during one of my searches about Cushings. Even the new vet said he hasn't seen many dogs with Cushings in his practice. I'm glad you guys are here! I posted a before and after picture of Joey taken 1 year ago and then this month. There's a big difference in his face.
Kelly (Joey's Mom)

[SasAndYunah]

Hi Kelly and Joey,

Welcome to both of you. First of all, I am very glad you found this site since this is a wonderful resource of help, support and holding hands if needed :)

I am not quite sure of the timeline of the events you describe in your post. For example, was Joey on Phenobarb already when he was tested for Cushings? This could influence the test results and would need a highly specialised vet to control both and to know how to interpret the test results. Secondly, it is advised not to use phenobarb and Lysodren together. In the case an epileptic dog needs Cushings treatment, they will usually switch from phenobarb to another kind of anti seizure drug first before starting the Lysodren. Both drugs interfere hugely with each other, making it all the more diffucult to treat either condition and to monitor them correctly.

People with a lot more knowledge will respond soon and the best thing you can do is to learn...about both conditions, the medications available for both conditions, symptoms, tests and...if you ask me, to find a specialist vet. Seven is still a "young" dog so please don't rush into any treatment at this moment that may not be right right type of treatment at this point. Educate yourself and ask everything you want on this board, people here are more then glad to help...

Saskia and Yunah,
The Netherlands.

[gpgscott]

Kelly,

I am so sorry you have to be here with your experiece with your Joey.

There is so much going on. If he has an adrenal tumor I suspect that could contribute to the heart issue.

He is young and retreivers are strong.

I would be seeking the advice of a well credentialed IMS (internal medicine specialst)

Your issue as you post it seems more pointed in the neurological direction than the medical direction.

It is also important to consider that if his heart is extremely compromised he will have no energy.

He is way too young. You need to have a diagnosis here from the medical professional caring for him.

Scott

[lulusmom]

Hi Kelly and welcome from me too.

I would like to validate everything Saskia has told you already. Unless a dog has an expanding pituitary tumor, seizures are not commonly associated nor attributed to cushing's. They are more likely to be associated with Hypothyroidism. It looks to me that Joey has been on phenobarbitol for less than a month. Every symptom you mentioned is an extremely common side effect of phenobarbitol. A lot of these side effects will resolve; however the most common long-term side effect is excessive drinking and urination and excessive hunger. Did Joey display any of these symptoms prior to being placed on Phenobarbitol? It looks like your vet did an abdominal ultrasound. Did s/he mention any abnormalities in the adrenal glands?

The first thing that normally tips off a vet about the possibility of cushing's is abnormalities in bloodwork, especially the liver enzymes, ALT, ALKP and GGT. Phenobarbitol also causes elevation in these liver enzymes so if your vet did bloodwork after starting the pheno, there is no way for him or her to tell whether the elevations are due to the pheno or steroids associated with cushing's. It seems that all of this happened at the same time so I am naturally suspicious as to whether or not Joey actually has cushing's.

Lysodren should be given with great caution to any dog that is also receiving other drugs that can greatly effect the liver and phenobarbitol is one of those drugs.

It would really help if you could post the results of the tests that were done to confirm a cushing's diagnosis. Also, a better understanding of timelines would help.

Glynda

[gpgscott]

Kelly,

Me again.

It would be useful if you had names and results of tests.

Many Drs. confuse results vis a vis Cushing's.

The tests would be ACTH, LDDS, HDDS, and ultrasound findings.

Hope Joey is resting peacefully. Scott

[gpgscott]

Kelly,

Glynda has helped expand on your this issue, I want to add that I would not administer anymore Lysodren until you had a clear understanding.

Witholding the Lysodren can do little harm, continuing to administer it to a pup which is not in need of it is very bad.

Scott

[Buffaloe]

Hi Kelly,

I am really glad you found us and Joey sure looks and sounds like a very special dog. I spent a good part of four years in Calgary; loved the Canadian Rockies/Banff.

My dog was definitively diagnosed with a large primary adrenal tumor almost three years ago. She had her adrenalectomy and is cured. I'm not sure Joey has an adrenal tumor but of course it is possible. First, it is very rare for a dog as young as Joey to develop an adrenal tumor. Secondly, the adrenal tumor should have shown up on your vet's ultrasound, not the digital x-rays but most certainly on the ultrasound. That is by far the best way to definitively diagnose an adrenal tumor. The adrenal gland with the tumor is enlarged and the other one is normal in size or atrophied. Also, if Joey has an adrenal tumor, there would generally be NO suppression on the low dose test. Many dogs with adrenal tumors test within the normal range on the ACTH test. Dogs with either pituitary or adrenal tumors usually have elevated liver enzymes (alk. phos. and alt.).

I know you have done alot of testing and have incurred significant expenses. But, I would be very hesitant to give Joey any Lysodren at this point. Ask your vet why he thinks Joey has an adrenal tumor. Ask him if he has an enlarged adrenal gland as per the ultrasound. Ask him if his liver enzymes are significantly elevated. Ask him if he showed any suppression on the ldds test. Please get a copy of all of the test results and post them for us, there should be an ultrasound report as well. See what it says about the adrenal glands. Hang in there and cheer on the Stamps.

Ken

[ventilate]

Hi and welcome from me and mine;
first thing, where in Alberta are you from? I was born and raised in Kinuso, a village about 180 miles north of Edmonton but have lived stateside from the past 15 years. I go home often as all my family is still there and in Leduc.
Cushings is a very difficult condition and the problem is there are other conditions that can mimic it and that can skew the tests.
My dog has Pit cushings and has it for over 3 years now. She is also treated with Lysodren. From what I understand about adrenal cushings is that it is normally more resilient to lysodren so it normally takes more of it to control the cortisol level. So I dont understand your vets plan about using a small dose. How much does your dog weigh and how much lysodren are you using? Did your vet give you instructions on what to watch out for as far as overdosing and did you get prednisione? Pred is like the antidote for lysodren, and can save your dogs life in the presence of low cortisol. Others have given you great info as far as the seizures, my dog has never had a siezure so I can not comment on that part of it. Just FYI, my dog does have Diabetes insipidus which is not the blood sugar Diabetes. this one they do not have enough or any anti diuretic hormone and can not concentrate their urine so they drink and drink and pee and pee. She was diag after being diag with cushings and her water uptake continues to be outragious even with her cortisol level well controlled. So that is one of the other things that can mimic some of the cushings symptoms. she is controlled with eye drops 2 times per day.
Good luck and please keep us in the loop, let me know where in Alberta you are.
Sharon

[Roxee's Dad]

Hi Kelly,

I also wanted to chime in and welcome you and Joey. I Just viewed your pictures and you indeed have a very handsome crew.

I can see you have been given some really good advice by the others as I affectionately call them. They have helped me and many others sort thru so many confusing symtoms and diagnosis.

I seems Joey has a few things going on and a systematic review and approach needs to be performed. What a rollercoaster ride indeed. You did great by getting a second opinion:) You may want to obtain all of Joey's test and results and bring them to an IMS for a consultation.

Looking forward to seeing Joey's test results. AND looking forward to Joey getting better and bringing that smile back to that handsome face of his.

[SasAndYunah]

After reading Sharon's (Ventilate) post to you, another thing came to mind that you need to know in case Joey is taking the Phenobarb and the Lysodren. Anti seizure meds containing phenobarb (but also others) decrease the prednisone levels in the blood. So in case of an overdose of Lysodren, Joey would need higher Prednisone dosing then usual... You see how complicated the use of both medications is, so I really would also recommend not to give the Lysodren if you haven't started it yet. Find a specialist, get the seizures sorted out first...the cause (if one can be found because there can be a zillion reasons for seizures and still many times a definate cause isn't found), the meds to treat the seizures (keeping in mind there might be Cushings involved so that would definately influence the choice of meds for the seizures), finding the right level of medication to control the seizures best and then move on to the Cushings, that would be my advice in this case.

Best of luck,

Saskia and Yunah :)

[JoeyRetriever]

Hi All!
Wow! Thanks very much everyone for your responses! Fortunately I do work in Occupational health and have some knowledge of medical issues which helps me understand and question the vets and watch over Joey. I always speak up to a doctor and question them without fear. Ventilate, I live just north of Calgary.

For the past 1-2 years, Joey has been displaying the Cushings symptoms he has. The old vet did multiple rounds of bloodwork and thyroid testing and it was always normal. Joey is 80 pounds (should be 65), and no matter how I restricted and monitored his food he could not lose weight and was always hungry and thirsty. With his hip displaysia I couldn't exercise him more. Last April, Joey had a dental done with 2 cracked molar teeth extracted (he loves chewing nylabones). His pre-surgery bloodwork was normal except for an elevated alk phos and it was at that time they detected the heart murmur and told me about it. They didn't think anything of the elevated alk phos at the time. And they said the heart murmur was very mild and nothing to worry about and lots of dogs have it. He didn't do well after surgery and was very tired and listless after and coughing. He also developed an infection at the site of the extractions and was put on antibiotics. I took him to the vet then several times and they discounted it as just recovering slower than most dogs. I also had them repeat the thyroid testing x 2 with lab confirmation and it was normal.

About 5 weeks later he had his first seizure (so his Cushing symptoms etc were going on before the seizure). I took him to the vet the day after his first seizure and they said to watch him and report back if he has any more of them. 6 days later he had 2 more seizures in the same day and they put him on 75mg of Phenobarb twice a day with 10mg of Valium to give post seizure to calm him and help prevent another back to back episode. After that I wasn't getting answers from the vet and they kept saying he had a brain tumor and cancer so I took him to the new vet who has been looking after my greyhound. He was seizure free and the new vet did a phenobarb level which was 158 (normal range was 60's to 150), so they reduced his Phenobarb to 60mg twice a day just 4 days before he had his last seizure on June 24th at the new vet's office. The new vet's opinion is Joey's seizures are Adult onset Epilepsy and feels the seizures are not at all related to the Cushings. He said he's had dogs on Phenobarb 12-14 years with no liver problems and we'll be monitoring him.

Yesterday, Joey's Lysodren Rx was phoned to a human pharmacy as the Vet didn't have it in stock. When I went in I told the Pharmacist the dog was on Phenobarb and asked her to see if there were any contradictions between the two drugs. She checked in her database and said there were no contradictions and it was safe to give both the drugs together.

I did give Joey his first Lysodren yesterday. He's on 500mg daily for 7 days, then we're back to the Vet for an ACTH test. If his levels are better his 500mg of Lysodren will be given once a week and monitored after that again. When I was at the vet with Joey yesterday I asked him what about a standard high loading dose and he said he wants to be careful and that he was using the maintenence dose of 500mg daily for a week. Also to watch the dog for reactions, monitor his drinking and eating, etc and report in to him. This new vet is good about calling me every evening to check on Joey. His digital ultrasound and xrays of his brain and his abdomen did not show anything abnormal. The digital pictures can be enhanced on the computer, zoomed in etc and I had a look at them with the vet. What was thought to be a mass in the abdomen on the old vet's regular xrays turned out to be a layer of fat as Joey is shaped like a barrel around the middle. The Dr feels he has an adrenal tumor that is very tiny but based upon the ACTH and Low Dex suppression tests done and cortisol level that it's adrenal cushings for certain.

It's kind of a double edged sword. Joey just turned 7yrs this month and that's not old. We have to keep him on the Phenobarb as repeated grand mal seizures are bad for his heart and can cause brain damage. (They didn't do a cardiac ultrasound yet but suspect he has mitral valve prolapse on the right side). Once the seizures and Cushings are under control they're going to assess and ultrasound him to see if he needs heart meds. But the Cushings symptoms were there for 1-2 yrs before and we have to treat him for that or risk all the complications that untreated Cushings can cause. It's a balancing act as he has both conditions at the same time but the Vet states they are not related to each other. I'm keeping a super close eye on him and he is always by my side. The vet is on call 24/7 and it takes 15 minutes to get there. We'll see how things go about consulting an Internal specialist. They're all at least an hour or more drive each way from here. Until Joey's seizure free and stable for awhile I'm not taking the chance of him having a seizure in the car the middle of the highway. I'll keep everyone posted on how he's doing and thanks for your advice and concern! 3 weeks ago when his regular vet told me they thought he was full of cancer, I almost put him down. I'm just very thankful I didn't put him down, the new vet confirmed it's not cancer and there are some treatments we can try. Last night he was happy and laying across my lap with a ball in his mouth watching all the Michael Jackson tributes on tv. ;)

[gpgscott]

Hi Kelley,

Do you have copies of the LDDS, and the ACTH.

I am confused by the comment of a tiny adrenal tumor, I can't see that the adrenals have been imaged by U/S, did I miss that. Neither the LDDS or the ACTH can be used to differentiate PDH from ADH, this is accepted practice.

And as has already been mentioned if I am figuring the dose right it is less than 14mg/kg/day. The lowest recommended loading dose is 25mg/kg/day. I am putting some links from our resources forum at the end of this post.

I am certainly no Dr. but I have seen so many members put their pups through un-necessary testing because of the treating Drs. lack of familiarity with Cushing's. ACTH tests are tough on pups and are expensive, it is my view they should be done as seldom as possible and the way to manage that is to follow well documented protocol in diagnosis and treatment. I cannot see that your Dr. is doing either.

Fortunately my pup is Atypical and responds to a treatment which does not require Lysodren. All of my comments are based on what I have learned here by reading others experiences.

Please spend time with the information in the resources forum, instead of giving you specific links I am just going to link you to the forum and you can browse.

Best to you both. Scott

http://www.k9cushings.com/forum/forumdisplay.php?f=10

[ventilate]

Kelly;
that dose of lysodren is very low. As i am sure you have read, the reason we give lysodren is to necrose the adrenal gland to a level that it only secretes a specific amount of cortisol. if you dont give enough to do that it is like not giving enough antibiotic for an infection it may help a bit but not enough to do what it is suppose to. for most of us we gave 50 mg per Kg of dogs wt. Nike my dog weighed 90 lbs when we started so she was getting 2000 mg per day until she got to that level, I knew as she left some food for her boyfriend. Then once stimed to see where she was for sure we started maintenance at 2000 mg per week divided up into 2 doses of 1000 mg, one on monday and one on thursdays. The goal is to get the cortisol between 1 and 5 ug/dl and maintain it there. I am afraid that with that low of dose you will be doing a lot of stims until you get it there and a lot of tweeking of the meds and it will take a lot longer to get your dog feeling better. If your dogs levels did get low with that dose I would have to question the diagnosis. We have seen dogs treated with lysodren or trilostane that were not cushnoid and for some it was discovered when their levels went to low and they got sick from one or a few doses of lysodren.
If you are close to Calgary, is there not a Internal med specialist ? In the long run it would probably save you money, as they are the experts in endocrine disorders and could get every thing worked out a lot faster with less testing than the reg vets. Some of us work with IMS and our reg vets. My vet refered us to an IMS, she ,the IMS, did some testing, came up with the DI diag, then spoke to my vet and told him what to do and what further tests to do, so I just took Nike to my reg vet after the initial visit. He sent her all the results and she would give him her recomendations for treatment for cushings and DI.
As Scott said we are not vets only people who love our dogs as much as you love yours and are Cushings survivors. We have seen many people come to this site, some of us have chosen to hang out and try to help people and prevent them from stepping in the same potholes we have stepped in, save them and their dogs a lot of unneeded grief.
good luck and please do keep us in the loop.
Sharon

[Nathalie]

Hi Kelly and welcome from me also.

When I moved from Germany to Canada, I lived in Calgary for 4 years before moving to Ontario. Loved the mountains but not the winters.:)
I can’t comment on the seizure issue but my 12 year old Phillip (63 lbs/28.58 kg) has PDH and Hypothyroidism and just finished loading on 1500 mg Lysodren daily and he is now on a maintenance dose of 1500 mg of Lysodren per week and already showing some nice improvements.



I am certainly no Dr. but I have seen so many members put their pups through un-necessary testing because of the treating Drs. lack of familiarity with Cushing's. ACTH tests are tough on pups and are expensive, it is my view they should be done as seldom as possible and the way to manage that is to follow well documented protocol in diagnosis and treatment. I cannot see that your Dr. is doing either.


This is what happened to us – Phillips vet did not follow the recommended loading protocol but with the help of the members of this group we did get our ducks in a row eventually.
At first I was all for taking it nice and slow and keeping the Lysodren as low as possible (liked a 'gentler approach) – the result was that that Phillips symptoms continued unnecessarily, he took more of the drug over time, money was wasted and an unnecessary ACTH test was performed even so he was still fully symptomatic.

Based on my own experience I can only recommend that you get hard copies of all tests – there is also great confusions among vets how to interpret test results and what are actually ‘good’ numbers for a dog that is taking Lysodren. My vet told me after the first ACTH and thyroid test that his numbers are good and to start him on maintenance. When I picked up the test results and posted the numbers to the group we quickly figured out why he was still symptomatic – the vet was comparing the numbers to the normal range of a dog who is not on Lysodren which differs from the reference range of a dog who is taking the drug. His thyroid once I compared it with what Dr. Jean Dodds recommended was also still way too low.

It’s nice that your vet is checking in on Joey and that you seem to have a good relationship with him. Phillip’s vet is nice too, sits with him on the floor and give him treats BUT based on my personal experiences it does not mean that they really have a good grasp on treating dogs with cushings or had a lot of experience doing so.

There is a tremendous amount of knowledge and first hand experience in this group and I can only encourage you to read as much as you can and post Joey’s test results and ask questions. Phillip and I certainly would not be where we are today without the help of this group.

Best wishes,
Nathalie

[Squirt's Mom]

Hi Kelly and welcome to you and Joey! :)

Everyone has given you great input and I don't have much to add. Since you have already started the Lyso, I did want to give you this info from Dr.s Feldman and Ettinger:

Lysodren administration should be stopped when:

1. the dog demonstrates any reduction in appetite; this might mean just pausing slightly during meal consumption, stopping to drink some water, or stopping in response to the owner's voice.

2. the polydipsic dog consumes less than 60 ml/kg/ day of water.

3. the dog vomits.

4. the dog has diarrhea

5. the dog is unusually listless.

The first two indications for stopping the medication are strongly emphasized because they are common and they precede worrisome overdosages. The occurrence of any of these signs strongly indicates that the end point in induction (loading) therapy has been achieved.

The last three signs in particular are what you will see if Joey's cortisol goes too low. If this happens, you will need to give him pred asap to prevent an Addisonian crisis, a potentially fatal situation. As his diagnosis is questionable at this point, this is our main concern.

My Squirt's story is one of a non-adrenal illness causing cush signs and positive test results on all tests for pituitary Cushing's. However, a splenic tumor was found and removed, and since then her cortisol has returned to normal. The PDH diagnosis is "highly questionable" now according to her IMS. If I had gone ahead with treatment for her with Lyso or Trilo, which was strongly suggested, she would have been in serious trouble in short order. I will be forever grateful that I tested and tested and tested her before I agreed to start those meds. This is just one reason we highly recommend thorough testing, looking for all causes of the signs seen, as those signs are not exclusive to Cushing's.

I am very glad you found us and hope to learn more about you both in the future. Read all you can from the Resource section here, from the threads, from other sources you find. Ask any questions you may have and we will do our best to help you understand. We learn from each other daily, sharing our experiences, researching what we don't know and passing on that knowledge. We are also here any time you just need to vent or if things get tough. The hand-holding here is amazing and you will never have to take one step on this journey alone. We will be with you all the way.

Hugs,
Leslie and the girls

[JoeyRetriever]

Just checking in with an update. Joey went on the low dose daily Lysodren. After the 4th day his water intake went back to normal, his energy was coming back and there was a big improvement in him! I was beginning to see my buddy back again. After day 7 (Saturday) he went for another ACTH stim test which put him back in the hole. (I won't get the results until Monday). His water intake increased, he has no energy again, back to panting at night and several hours after the ACTH stim test he had another seizure. What all this showed me is the Lysodren is going to help him but the Vet's dosage of 500mg od for an 80 pound dog is wrong. When I get his test results tomorrow the Vet is either going to put Joey on a proper loading dose and consult an IM specialist or I'm going to plan B and taking him to another Vet who will send him to an IM specialist. I know the Lysodren is going to help him now but I just have to get someone to put him on the right dosage. Will let you know how that goes.

[StarDeb55]

I have not posted to you before Kelly, but have gone back & read Joey's thread. First of all, I think going to an IMS is the best route to take. With the issue of seizures along with Cushing's, it really is going to take an IMS to manage both issues correctly.

As Sharon has pointed out to you earlier, the dose of lyso that was prescribed is extremely low. Loading dosage is usually 25-50 mg/kg, split into 2 doses per day. For Joey's size, this means he should be getting between 910-1820 mg. lyso daily. Just as a quick reminder, if you could get a copy of all of Joey's testing that has been done to diagnose Cushing's & post the results for us, it would be a huge help. We always like to see those numbers as it just helps us to give you the best feedback we can from the group's collective experience.

Please keep us posted as you proceed.

Debbie

[JoeyRetriever]

Hi All,
The rollercoaster continues. After 3 weeks of daily Lysodren (500mg OD x 1 week, then 1000mg OD x 2 wks),and ACTH tests every 5 days Joey did not load. Throughout I took my concerns to the vet of changes in the color of his gums, weakness, falling on the stairs, and the possible interactions of the Lysodren with the Phenobarb he was on for epilepsy. Also that each ACTH test caused a seizure afterwards from the stress of injecting him with cortisol and they were doing them frequently. I wasn't getting any satisfactory answers in fact to my Phenobarb/Lysodren reaction question and I received a condesending "I've never heard of that" barked back at me from the Vet. No other bloodwork was done to monitor him except the almost $400 each ACTH stim tests. I felt very uneasy and the dog was declining so I took Joey back to my regular vet. They were shocked at him after not seeing him for 6 weeks. They ran bloodwork on him. His previous alk phos was 142. Now his alk phos is 7130. Essentially the dog was poisoned. His other bloodwork was normal with the exception of his Thyroid being low (which previously was normal). The Lysodren was discontinued. When his alk phos levels are better and he gets his strength back and is seizure free they're sending him to an IM. He's also being weaned off the Phenobarb and starting on potassium bromide. My adult son thinks I should go in there to the vet who put him on Lysodren and ask for a refund on over $2k of vet bills. Needless to say I'm very upset. My dog was poisoned and the vet didn't take the time to research the possible drug interactions prior and would not listen to me when I questioned him about it. Others think I should report the vet to the licencing board. I have two questions:
1. What would you do?
2. Any suggestions of types of food etc to help with the toxicity in his liver? (I can't change his dog food when he's on seizure meds but is there is something I can add to his diet?)

thanks everyone for your support,

[Roxee's Dad]

Hi Kelly,
I am really sorry for what you and your Joey had to go through. Very glad that you did go back to your regular vet to get this straightened out.

Regarding the liver supplements, Many here including myself use Milk Thistle and sam-e supplements for our pups liver.

PS: In looking back through your thread, I don't see any test results that conclude Joey has cushings. Just wondering with all the problems going on with Joey, has a proper diagnosis of cushings been made? Were any stim or LDDS test performed before Joey started the Lyso?

[JoeyRetriever]

Thanks for your reply. Joey's initial test results are:
ACTH Stim Test (results: baseline: 215, Post stim: >800)
Low Dex Suppression Test don't have exact #'s but it's been faxed over to my regular vet. I was told cortisol stayed down at normal level, was told results indicated Adrenal Cushings. My regular vet reviewed all the results and confirmed Joey definitely does have Cushings.
Would you happen to know how much Milk Thistle or Sam-E is suggested for a 75lb dog?

thanks

[Harley PoMMom]

Hi Kelly,

In the Resource section there is a thread on milk thistle and SAMe, here are the links:

Re: Milk Thistle/Sam-e and more (for liver "support")

http://www.k9cushings.com/forum/showthread.php?t=192

Hugs to you and Joey.
Lori

[Nathalie]

Hello Kelly,

I am so very sorry you and your dog have been having such a hard time. :(

I can’t comment on the interaction between Lysodren and Phenobarb as I don’t have any experience with it.

400$ for an ACTH test seems extremely high – just to give you an idea, we live in Ontario and I pay $142.
Reg. the ALP – if the elevation was caused by an interaction betweend Lysodren and Phenobarb this number should come down since you stopped the Lysodren (keep in mind that excess cortisol will also elevate ALK levels). ALK which is termed a "dump" enzyme -- as it reflects the excretion products of liver cell metabolism -- when the live cells are working faster, the make more of this enzyme

It is the ALT that would indicate liver cell injury.
What is Joey’s ALT level?

It is not uncommon that dogs who have Cushings also have Hypothyroidism. In order to get a definite diagnosis I would run a full thyroid panel and not only rely on a T4 count.
If the Hypothyroidism is a result of Cushings then the condiditon would be called Euthyroid Sick Syndrome (due to nonthyroidal illness).
Phillip’s vet did not want to put him on thyroid medications as she believed that over time with the Cushings being under control it would also bring back the thyroid levels to normal values. She also said that if we started him on thyroid replacement he would have to be on it for life.

I contacted Dr. Jean Dodds and she said to put him on thyroid replacement and she said “The fact that many veterinarians believe incorrectly that once you put an animal on thyroxine, he/she needs to be on this medication for life. In fact, if you stop the thyroxine even after years of therapy, it takes 5-6 weeks for the pituitary-thyroid axis to be reactivated to its original capacity [whether low or normal] .”

I can understand that you are very upset and honestly I don’t know what I would do in your situation. I think for now I would just get everything documented and request copies of every test ect. that was done and make getting Joey’s issue sortened my priority and then deal with the ‘vet issue’ then.

Here is a link to info reg. Milk Thistel and dosing http://www.canine-epilepsy.com/MilkThistle.html.

My Phillip is 63 lbs and I am giving him 50% of the recommended dose for humans. Looks like your Joey would be good at 75%

Nathalie

[JoeyRetriever]

I've found out that vet overcharges and was told that most of the ACTH tests done and the frequency they were done were not necessary. He's been phoning my regular vet and they refuse to respond to him.
The rest of Joey's Liver enzymes were normal as was all the rest of his bloodwork (except the thyroid). He had several Thyroid tests and confirmation tests done a couple of months ago which were normal. They had run thyroid tests on him initially to rule that out when I told them about him not being able to lose weight. The regular vet feels his Thyroid could be low right now because of the shock to his system. Hopefully it will recover or then we'll have something new to deal with. They want to give him some time to rest, wean him off the phenobarb and then do his bloodwork again. He had his last dose of 1000mg Lysodren just 4 days ago.
Thanks very much for the links regarding the Milk Thistle! I'll talk to Joey's regular vet about it.

[Harley PoMMom]

Hi Kelly,

Never did answer your first question as to:
1. What would you do? I am providing you this link to the Principles of Veterinary Medical Ethics of the AVMA and see what you think.

http://www.avma.org/issues/policy/ethics.asp

Now for my answer, if this vet treated your Joey without Joey's health and welfare being the number one priority and if he's only in the animal health and welfare "business" for the money, I sure would report him, I would not want another innocent furbaby to fall into his hideous hands.

I am so sorry that you and Joey are going thru such a rough time, but we are here for you, remember that.

[SasAndYunah]

Hi Kelly,

sorry to hear everything turned out so "messy". I really still think you should go see an IM. Not once everything has settled down again, but now, during this "mess". A whole lot of things have gone wrong and a whole lot of tests were interpreted by someone clearly lacking the knowledge. Apart from seeing an IM I would strongle advise you to go educate yourself as best as you can about epilepsy and Cushing's, epilepsy being the first, at this time. Here's a link to a very helpfull site about canine epilepsy: http://www.canine-epilepsy-guardian-angels.com/

Also, at this point in time I would not add or change anything about Joey's diet. If you start adding for example milkthistle, and Joey will have more seizures, you won't know if it's because of the milkthistle or the change from phenobarb to the bromide. Also, I would ask for liquid valium since this can be administered during a seizure and may help shorten the seizure or may help prevent the dog going into a grand mal seizure or even clustering. For tablets, the dog has to be fully conscious before he can swallow them. You can find the "Valium protocol" on the website I mentioned. Keep a diary of the seizures. When they happened, how long they lasted, the time they happened, did something special happen the day he seizured (visit to vet, got into a fight with the neighbours dog, etc). This will help you but also the IM to get more grip on the seizures, the type of seizures and what would be the best course of treatment, etc...

If all the Cushing's test were done while Joey was already on phenobarb, the test were not reliable. The results are altered by the phenobarb. So also study Cushing's disease but right now, focus on the epilepsy and go see an IM.

Saskia and Yunah,
The Netherlands.

[lulusmom]

Hi Kelly,

I am so sorry that Joey is having such a terrible time right now. In response to whether or not your vet is guilty of malpractice, I don't think so. Is he guilty of maybe not knowing the proper protocol for treating with Lysodren, most probably. Firstly, if Joey has an adrenal tumor, the recommended loading dose would be between 50mg and 75mg per kg as adrenal tumors are extremely resistant to Lysodren. In Joey's case, that would be between approximately 1700mg and 2500mg, divided twice daily. Secondly, phenobarbitol alters the metabolism of Lysodren, making it necessary to give larger than normal doses. It is no wonder that Joey was never loaded as the piddly dose (14.9mg week one and 29mg week two) probably had little if any effect. I'd be really mad at the vet for wasting money on stim tests and meds but I wouldn't think that filing a complaint or suing him for using an overly conservative approach would yield any results for you. However, having said all that, I am surprised by Joey's reaction to the Lysodren so perhaps it is a good thing that the dose was so low.

Trying to control two very serious conditions is difficult so I totally agree with Saskia that consulting with an Internal Medicine Specialist would be in Joey's best interest. I have two cushdogs and both treat with an IM. Until I parted ways with my gp vet because of their rigid vaccine guidelines, the IM did coordinate treatment with their gp vet so you wouldn't have to stop treating with your gp vet. As a matter of fact, I used to have my gp vet do all the stims as they were quite a bit cheaper than the IM. My dogs also have multiple issues so in the event they ever have a crisis, my car is on auto pilot to the IM. I sincerely hope that you will give this serious consideration.

Glynda

[AlisonandMia]

I too am sorry that you and Joey are having such a rough time now.

As Glynda says the interaction between Phenobarb and Lysodren is such that taking Phenobarb will make the Lysodren less effective rather than the combination being toxic or anything. This, combined with the very low dose of Lysodren that Joey was on, makes it extremely unlikely that the Lysodren has had any effect on him at all - either beneficial or detrimental. I would be inclined to blame the Phenobarb for the high liver enzymes and the weakness you are seeing. See: http://www.canine-epilepsy-guardian-angels.com/phenobarbital.htm It sounds like he may be a dog that just doesn't tolerate phenobarb well.

As Saskia asked, was Joey on Phenobarb when the Cushing's testing was done? It can definitely affect the results of a Low Dose Dexamethasone Suppression (LDDS) test.

It seems that Joey has been diagnosed as having an adrenal tumor on the strength of his LDDS test results - is that right? The thing is adrenal Cushing's cannot be conclusively diagnosed by that test and many dogs with pituitary Cushing's (including my dog) will have an LDDS test result that suggests that an adrenal tumor is a possibility. The LDDS test can be used to diagnose pituitary Cushing's (if you are lucky) but not adrenal Cushing's. So if a dog returns an LDDS that does not conclusively show pituitary Cushing's then further testing is needed to ascertain which type it is and the test of choice is usually a high resolution abdominal ultrasound.

With the ACTH stims and the seizures afterward - it would be my guess that the stress of being at the vet's was probably more of a factor in triggering the seizures than the actual tests.

I too think you need to get him to a IMS as soon as possible - taking into account the risk of the trip triggering seizures as he is transitioning from the Phenobarb to the Potassium Bromide. I don't know if that is thought to be a problem but it may be one reason for your vet wanting to wait until things settle down a bit before having him seen by an IMS. Just out of curiosity (I don't know much about the management of canine epilepsy), do you have valium on hand for if his seizures get out of control? I know the parents of children with seizure disorders often have valium suppositories with them at all times to control any unexpected seizures.

With regards the vet - maybe you could try negotiating a discount on the basis that standard dosing protocols were not being followed and that therefore you had to pay for a lot more testing than is standard. Of course he may come back with a statement to the effect that the possibly side effects of the Phenobarb (increased urination and drinking and appetite) could have masked the normal signs of loading and therefore a cautious approach with very frequent testing was necessary. However if this was the case then he should have explained that up front. Close to $400.00 per ACTH stim does seem a bit steep to me - although with Joey being a large dog more stimulating agent would have been needed than with a smaller dog.

Alison

[JoeyRetriever]

Hi All!
Thanks very much for all the wonderful support and suggestions! It's truly amazing how dog lovers all over the world can come together and help each other. I appreciate everyone's input!
A bit more info. Joey was on Phenobarb for only a couple weeks prior to being diagnosed with Cushings. His seizures were new and had never happened before. Both vets diagnosed it as idopathic adult onset epilepsy that is unrelated to the Cushings. He's on 10mg of Valium as needed post seizures. He is very easy to give a pill to. When he was diagnosed with Cushings at the new vet I had run out of Phenobarb and the new vet filled his prescription of 60mg tablets. When I took him back to my regular vet as he was doing down hill, I brought all his prescriptions with me. I found out from my regular vet that the 60 mg tabs phenobarb the new vet dispensed to Joey had been recalled over a month prior due to it maintaining insufficient levels of Phenobarb. My regular vet had cleared out all of their stock of it a month prior but the new vet was still dispensing it and did not appear to know about the recall until I called his office to tell them. I was concerned as other dogs would have that recalled medicine. (any of you who have dogs on the blue 60mg tablets of Phenobarb need to check with your Vet to ensure you don't have the recalled medicine). I was told the combination of giving him the (recalled) Phenobarb and the Lysodren and the frequent ACTH stim tests all brought up his alk phos level to 7130 from 142. He's been seizure free since we got him onto a fresh prescription and since his last ACTH test July 11th.
Joey did have an abd ultrasound at the new vet but he had too much gas in his intestines to get a clear view. They showed me the 2 views they captured but neither were of his adrenals. They recommended we do it again later. (when he's recovered enough I will have the IM do one).
Right now this poor guy is worn out. He's a very sweet, calm, cooperative and happy dog and it's so hard to see him like this. Often times needs help to get him up standing when he's laying down. He's limping pretty badly when he is up. On a good day he can only manage to walk slowly about 4 or 5 houses down the block and back and that's only a couple of days a week. If you stop to look at anything for half a second along the way he lays down on the sidewalk. Previously (even after starting on Phenobarb) he could walk a mile, swim, run and fetch a ball. He has arthritis but it didn't bother him much before as excess cortisol with the Cushings can help with mobility. The decrease in cortisol from the Lysodren tx has brought on pain and stiffness. We can't put him on arthritis meds for pain until he's doing better and his alk phos looks better. He's being weaned slowly off the prednisone and started Potassium Bromide 5 days ago concurrently. Right now this week and next week he's still on his regular dose of Prednisone.
I did buy him Milk Thistle today and thought it would be best to get him on it for a couple of weeks at least while he's still on his usual dose of Prednisone and is seizure free. He needs all the help he can get right now. It's unreal how when you do an internet search for dosage of milk thistle for dogs (75lbs) that you see everything from 175mg/day to over 2000mg/day. Everyone has different reccomendations. I purchased 2 bottles of it today. A Swiss Formula kind from Walmart that is 250mg and states 2 capsules/day for an adult human. The second bottle is a more expensive Milk Thistle from a very good Vitamin/Health store in 250mg and states 3 capsules/day for an adult human. Both are 80% silymarin content. I'm going to follow the 75% of the human dose reccomendation listed in the resources section of the forum.
As for the other vet. I'm upset at what's happened but I am concerned for other animals with special conditions going there who may not be getting treated with enough knowledge or concern. Had I not found this forum or done research on the net and had previous knowledge of medical issues I could have gone along following the other Vet's instructions and continued Joey's treatment. I would have lost him. I certainly would not reccommend that vet to anyone. As well it's unfair for those pet owners going there who are paying outrageous fees on the premise it's being represented as a clinic with the newest and best equipment. In Canada here each province has a vet registry. I was told by a very knowledgable source on the inside that the registry takes complaints very seriously and how to get in touch with them. I'm going to look into it.
A big thank you to everyone from Joey and I!

[Harley PoMMom]

Hi Kelly,

Thanks for the update and I just wanted to remind you that with cushpups, usually their alk phos levels are elevated...but here's hoping the milk thistle lowers that ALP.

Also some of the members treat their cushpups that have arthritis with Adequane shots, I believe it's better than the NAISD, as far as side effects for the cushpups. If your interested in the Adequane shots, just let us know and I'm sure someone that is using it on their furbaby will chime in. But I would like to add that before you start Joey on anything new I would first consult with an IM or with Joey's vet bc of all that Joey's been thru.

I'm happy to read that Joey's been seizure free since July 11th :), and I am appalled that his old vet still had the recalled phenobarb on the shelf...what an @%#hole :mad:. Kudos to you for calling him and telling him about it.

Please keep us updated and give Joey belly rubs from Harley and me.
Lori

PS: I strongly urge you to heed to the advice of these very knowledgeable people, they have "been there," "seen that happen," and really know what they are talking about. They have you and Joey's best interest in their hearts.

[SasAndYunah]

I know I may sound very persistent here, but I would again like to emphasize not to start anything new at this time. Not till after you seen an IM. The increase in Joey's alk phos may have been due to a combination of medications, it may have been due solely to the phenobarb... What should have happenend, but obviously hasn't, is that after 10 - 14 days on phenobarb Joeys phenobarb levels and his liverenzymes should have been checked. Some dogs tolerate phenobarb very well, others don't. And when the alk phos levels increase greatly in the first 10 - 14 days, that's often a sign that that particularly dog does not tolerate the phenobarb and they will switch to another medication. So saying it was the combaniation, may or may not be the case. One thing with epilepsy, is that you really need to understand that adding or switching food, vitamines, medications, etc....may have major impact. You want the IM to have a clear picture of Joey's situation, including how his liverenzyms are without milkthistle.

I'm not sure what tests were perforemd to reach the conclusion that Joey has idiopathic epilepsy (which is what it is, in most cases, simply meaning, they don't know the cause) but before one can get to that conclusion a series of tests has to be performed. Primary, or idiopathic epilepsy, is usually seen in dogs between 6 months and 5 years of age, with an average of 3 years old. Secundairy epilepsy is usually seen in dogs under the age of 1 and over the age of 6. Secudairy epilepsy means there is a cause for the seizures. Since Joey would fit better in this second group, age wise, I wonder if he was thouroughly examined. For example, a wellknown cause for secundary epilepsy in dog of 6 and over is hypoglycemia (low bloodsugar). One of te causes for hypoglycamia can be the pancreas... Copper, another cause for epilepsy. So, all these causes have to be excluded before one can say it's primary/idiopathic epilepsy. I don't want to come across too strong but I have to say honestly that I regret not being more persistent when I wrote not to use the phenobarb with the Lysodren. Because I knew my knowledge about that matter was better then what you were told by the vet and pharmacie... and I don't want to make that mistake twice at Joey's expense :) So, I would like to ask you again, to not start adding anything to Joey's diet and to have him seen by an IM...and not to wait till he is improved. His current state is valuable information for an IM :) See the IM, and let the IM deal with what supplements you can add, what medications to give for his arthritis, etc. And make sure the idiopathic diagnosis is correct.

Again, forgive me if I come across too strong, I really just mean well,

Saskia and Yunah :)

[gpgscott]

Kelly,

I have been staying away from posting as the seizure issue is a serious one and I know nothing about it.

I do think a letter describing your experience with the Dr. to this board you refer to is in order.

Please continue to keep us posted.

Best wishes. Scott

[JoeyRetriever]

Just a quick update to let you know Joey is starting to feel better. He had 5 rough days but for the past 2 he's been alert, happy, and trying to compete with his brother to catch a ball despite the arthritis flare up. It's such a relief after what he's been through and I feel like I have my dog back! Doing well on the Potassium Bromide for seizures. The next month will be spent gradually weaning him off the Phenobarb as per the vet's instructions. After that we'll see how he's doing and figure out what's next. If anyone has any links to good articles about treating both cushings and arthritis I'd be grateful. I read one where they felt it's kinder for the dog to not treat the cushings when a dog has severe arthritis as the excess cortisol helps with mobility. I can definitely say that prior to the Lyso he had few problems but after the lyso he's been limping and having a hard time getting up.

Thanks again and I'm glad to have good news for a change!

[AlisonandMia]

Would you be able to post the results the ACTH stim tests done to monitor the Lysodren therapy? Was his cortisol actually decreased very significantly?

Using Cushing's to "treat" arthritis is very much a two-edged sword, I think. Although it does relieve some of the pain it also weakens muscles, particularly the muscles around the spine and the hindquarters, which in turn throws great stresses onto the joints - which isn't good for arthritis. Interestingly, humans with Cushing's report being in constant aching pain, presumably because of the muscle weakness placing so much strain on their joints.

I look at it this way - if I had a dog with severe arthritis issues I wouldn't opt for using corticosteroids as a long-term treatment and leaving Cushing's untreated amounts to the same thing. The only difference is that one is an active decision and the other a passive one. From a medical point of view though the results are identical. A treated Cushing's dog that also has arthritis issues is in pretty much the same position as a non-Cushing's dog with arthritis and can be treated with the same treatments. The only difference is that in the early days of treating the Cushing's, when the cortisol is first lowered, the muscles will be wasted and weak for a while because of the effects of the previously high cortisol and arthritis that would have come on gradually is suddenly revealed as being as bad as it really is. The dog often becomes more active as it feels better and that can cause some bad days too. Many dogs here have both issues and once an effective pain relief regime is worked out for the arthritis and they regain some fitness they go onto live happy lives with both the Cushing's and their arthritis under control.

I'm also wondering if some of Joey's soreness that you've been seeing couldn't be from his seizures. My sister is epileptic and if she has a tonic-clonic seizure she will be really sore for days (up to a week) because of the intense spasming of the muscles during the seizure.

Alison

[Harley PoMMom]

Hi Kelly,

First let me state that I know nothing about seizures and I'm just learning about cushings (I'm a new member :eek::D.) The arthritis, too, I only know alittle about. My Harley has it, but it isn't that bad...yet. I did find some info out for you on the arthritis.




Hi Sharon,

Do you think the muscle weakness may actually be joint issues? If so, you might want to read the following links:

http://www.dogaware.com/wdjarthritis.html
http://www.dogaware.com/arthritis.html
(I haven’t read the second one yet, but it’s by the same person, so it should be similar – it is, however, much longer!) And keep in mind that some of the options she lists may not be good for Nikki – for example, I know Wylie gets sick on Rimadyl/NSAIDs, and I recently got a “high quality” fish oil for him, but I think it was the cause of mucous covered stools with him:eek:.

-Susy


As far as not treating the cushings...bottom line...left untreated, high cortisol can wreak havoc on a cushdogs internal organs...but you do have Joey's seizures as a priority right now...I agree with Saskia that you really do need to see an IMS for Joey's benefit. Like I said I am no expert at these things...but if I were you I'd listen to Saskia. :)

Other arthritis links:

http://www.luitpold.com/canine/faq/faq.htm

http://www.vetinfo.com/adequan-side-effects.html

Hugs.
Lori

[JoeyRetriever]

Thanks very much Lori and Alison! The lowest his post stim cortisol went was 500 after being on Lysodren for 3 weeks. The dosage wasn't enough to load him but was enough to show us how bad his arthritis really is. They cut his Phenobarb dosage in half 4 days ago (while having him on Potassium Bromide at the same time). Seizure free so far. When he did have seizures he wasn't sore after with arthritis, just really tired out for a couple of days after. Unfortunately this poor dog has yet another new problem, a paralyzed larnyx that will worsen over time. The symptoms are there but are not present 100% of the time yet. We have to really watch that one as his throat can close up and stop his breathing. I just shake my head and wonder what illness will eventually get him and when? From May 30 to July 16 he's been diagnosed with Epilepsy (a brain tumor is not ruled out yet...I won't put him under anesthetic right now to do an MRI), Cushings, an enlarged heart, and a paralyzed larnyx on top of his hip displaysia and arthritis. It's really hard to get a grip on all this happening in such a short period of time to one dog who just turned 7 last month. He was from a backyard breeder and the poor genetics are showing up at his expense. My other golden retriever had a tumor removed from his mouth at just 3 yrs old and has food allergies. He's originally from a puppy mill. These dogs are very popular and have become very in-bred as a result. People buy a male and female and breed them to make a buck without researching their lineage or health problems down the line first. For Joey, I'm keeping an eye on his neuro functioning and seizures which right now are priority over treating the Cushings. He's re-gaining some energy and able to go for a walk around the block again, he's still limping and a bit off balance occasionally and the past 2 days he's able to run a few yards to chase my other golden. He goes back in about 2 weeks for follow up bloodwork and alk phos to see if his liver poisioning is resolved. I want to take a slow wait and see approach, treat what we need to treat to keep him comfortable and give him some quality of life for as long as possible. If he does really well we can treat the Cushings but if not, I don't want to put him through the treatment.

[ventilate]

Hi and welcome from me and mine;
I understand about not treating the cushings due to the arthritis, but there are meds that help tremendously with the arthritis. Nike my Giant Schnauzer has been diag with cushings for 3.5years now. She had bilateral ACL repair when she was 8. she is now a 12.5 year old GS with bad knees and arthritic hips. Her vet and IMS took her off all NSAIDs as they can cause GI bleeding. She is on Fish oil, Adaquan injections every 2 weeks ( that is glucosamine), tramadol which is a pain med and on gabapentin or Neurontin which is a human med used for neurogenic pain nerve pain. The combination of what she gets seems to keep her very well, even with her cortisol levels low.
So there are meds that can help, my advice would be to maybe talk to your vet about the adaquan and there is a loading period then the once or twice a month maint. It may be wise to start it now prior to starting any treatment your dont want to start anything else when you start to treat so there is not way symtpoms can be confused if due to treatment A or treatment B.
Good luck
Sharon