Marathon journey to Cushing's diagnosis and regulation

[Poppy'sMum]

I can't describe how relieved I am to discover this website - it provides a wealth of resources and great support for owners of Cushings K9's but is making me realise that the roller-coaster last 6 months may be fairly typical of what is to come, now my 12 year old labrador bitch Sasha has been diagnosed with Cushing's. But thankfully now I am in a well supported place with you guys and would welcome feedback on my experiences.

Sasha begun to show slight lameness last summer, which was quite pronounced by September. A large thorn was removed from her paw at that time but made no difference. In November we returned to the vet as she was now drinking abnormaly, approx 160ml/kg. The vet did a full blood screening which came back normal on all parameters. Urine was extremely dilute, 1.01? He thought at this point Cushings unlikely as liver enzymes were normal. Her shoulders were x-rayed, which shower arthritic changes that appeared to explain the lameness, a scan of her abdomen was normal but chest xray showed both lungs 'fluffy' ie full of pneumonia. This was thought to be possible cause of PUPD. She had 6 weeks broad spectrum antibiotic Kesium, followed by xray that showed little change, 2 weeks doxycyclin followed by another little changed xray. She did become brighter and more relaxed in herself during antibiotic treatment and as the vet says, we don't know what her lungs were like before. Meanwhile she was still a slave to the water bowl, PUPD, her shoulder muscles became noticeably wasted, she was ravenous and stealing food, distended abdomen, her shaved abdomen showed no signs of growth after 2 months, she was generally weak especially in her back legs and often couldnt go faster than a walk (this dog is usually a long-range safari type. In January we noticed the end of her tail was hairless and then we tested for Cushing's and she tested classically positive, Cortisol 182 & 1181 pre and post ACTH. She was prescribed vetoryl at 60mg per day in the morning with food. Day 1 she left half her food in the evening for the first time in her life, days 2 & 3 we had to doctor her food and day 3 pm she would not eat but was projectile vomitting. Drinking was reduced during the 3 days and her abdomen became much less distended. Vetoryl was stopped for 4 days and re-started at 30mg. Once again she became inappetant very quickly (we managed to get her to eat by adding gravy, baked potato, egg), there was an effect on drinking but by day 3 we had to stop and did ACTH stim test, baseline cortisol was 86. She had a 4 day break again to get eating properly then started again with 30mg (on the advice of Dechra), once again she became inappetant refusing to eat dry food but happy with proprietary raw diet. She was quite bright and drinking reduced until day 4 when she was fairly 'out of it' and no faster than walk despite going to friends fields with other dogs. We stopped again for 3 days then re-started on 10mg (advised by Dechra). This had an effect (inappetance, lower water consumption) 10 days stim test was cortisol 126 and liver enzymes still high. We are now on 15mg and my feeling is still not quite enough as she is drinking a fair amount and still has paunchy tummy and raised veins on her abdomen and seems a bit agitated. Fur may be growing though - hooray!! And she's generally bright, energetic and getting much stronger. I've noticed that her breath whistles when she is untreated and the reduction in whistling accompany's symptom reduction....maybe the reduction in abdominal distension reduces pressure/congestion on the lungs? I would be very grateful for any advice about diet or information about the mechanism of inappetance? It seems that any new food is OK for 1 or 2 meals but then she wont touch it. My feeling is that she has struggled with dry food due to muscle weakness swallowing? She seemed to choke sometimes and was definitely slower eating than she has ever been, this is a true lab!! She will appear hungry and stand by her bowl but may be oblivious to the contents. Even when she eats enthusiastically she will suddenly stop and walk away from half empty bowl - sudden loss of appetite? The only food she seems really keen on is home-made, which is not ideal..... We realised that she lost her bark for the last few months but is now starting to bark again since Vetoryl, though only half the bark it used to be. The other problem has begun since treatment is excessive grooming of our other labrador. She has been in season for last 18 days and this behaviour is weakening a little now the season is ending but she has been obsessed with getting to the other dog, licking endlessly and riding her. I'd be interested to know if these symptoms are known? and any advice welcome, it's hard work!

[Harley PoMMom]

Hi and welcome to you and Poppy!

From her reaction on the 60 mg of Vetoryl I agree that the dose was too high for her. And yes, sometimes it does take quite a bit of tweaking to find the right dose that works.

I wonder if some of her inappetence and/or licking could be due to gastric upset which is a fairly common side effect from Trilostane. Many of our members give their dog pepcid ac 20-30 minutes before the administration of their Trilostane dose. Also it may help to elevate her bowls so she has easier access to them to eat. Has her mouth and teeth been checked to make sure there is nothing going on in there that would cause her inappetence?

One very important protocol with those ACTH stimulation tests is that it has to be performed 4-6 hours post pill. Is this protocol being followed? Another question I have is, was she diagnosed with the pituitary or adrenal form of Cushing's?

I'm at work so I have to keep this post short, i apologize for that, but I'm sure others will be by shortly to offer their advice and support.

Hugs, Lori

[Poppy'sMum]

Hi Lori and thanks for taking time out of your work schedule to be my first response! Her mouth and teeth have been checked. Good idea about Pepcid - especially since she will start eating with great gusto and then quite suddenly walk away as if something happened...like sudden cramping etc. It's odd though how she will eat certain dry foods but won't touch others including her lifelong dry food. She'll sit beside me when I'm cooking cocking her head and will happily eat all sorts of tit-bits but there seems to be a problem with food in her bowl and certain foods, as if her flavour profile has changed.

I'm absolutely certain the grooming and riding is hormonal disturbance - she has been fixated with the other dog like a sex-pest! Seems to have been switched on by the Vetoryl though?

Yes ACTH stim test was performed 4 and 5 hours after treatment. We didn't test for pituitary or adrenal tumour, the vet suggested treating her symptomatically since surgery would not be an option for dog her age.

Something I forgot to mention that I'd noticed comment on in another thread is that she hasn't been panting at all as a symptom and seems cold with Cushing rather than hot. SHe chooses to lie in front of the Aga when in the kitchen and is stretched out in front of the fire as we speak! I've sensed that she gets chilled when wet now, which hasn't been the case previously. She is a very lean working lab not the 'comfortable' type!!

[Carole Alexander]

Hi and welcome to the marathon. I'm not of much help on many of your questions about symptoms but for what it is worth, I believe that symptoms are extremely variable. My dog, Skippy, who was diagnosed last November has recently stopped barking. He too gets chilled, has never panted and he refuses to eat anything on Vetoryl. (I recently stopped the medication.) He now does have occasional light tremors and a couple of other cognitive symptoms but we don't know why. He is 12 and I now wonder about senility and/or a macro tumor. Best to you on this journey.

[judymaggie]

Hi and welcome to you and Sasha! Lori has gotten you started so just wanted to mention a couple of things. My Abbie is currently not taking trilostane but, when she did, I did give her Pepcid (make sure it is Original, not AC -- I buy generic from a "big box" store) 15-20 minutes prior to the meal after which she got the trilostane. She never had an upset stomach so I do think it helped. You can check with your vet re correct dose for Sasha's weight.

It is not uncommon for hormones other than cortisol to be raised along with the cortisol -- this may account for some of the behaviors you are seeing. Melatonin and lignans are often recommended to lower these hormones. The University of Tennessee Endocrinology Department specializes in this area. Here is an article from them re lignans:

https://vetmed.tennessee.edu/vmc/dls/Endocrinology/Documents/LIGNANS%20INFORMATION.pdf

I'm sure others will be along to add their input and guidance!

[molly muffin]

Hello and welcome from me too. How are her lungs now? Did they ever do an abdominal ultrasound to check her internal organs? I know surgery isn't on the list of options but just to make sure there isn't something else going on with her that might have caused the cortisol to increase and to rule out fluid in the abdomen, pancreatic issues, etc.

Maybe a split dose would work better for her, 10mg am and 10mg pm? to keep levels optimal throughout the day? Although you don't want her giving up on her food that is just a thought.

Also have they run a kidney panel to check that kidneys are okay?

[Harley PoMMom]

My Abbie is currently not taking trilostane but, when she did, I did give her Pepcid (make sure it is Original, not AC -- I buy generic from a "big box" store) 15-20 minutes prior to the meal after which she got the trilostane. She never had an upset stomach so I do think it helped.

Harley started out on original strength Pepcid AC, the AC stands for acid controller and famotidine is the active ingredient. There is a Pepcid complete which you do not want to give to dogs. ;)

It is very odd that a cushdog wants to lie where it is warmer, has Poppy's thyroid levels been checked?

[Poppy'sMum]

Thanks Carole. Sorry to hear you are having such a struggle with Skippy but for me at least, there is something supportive about knowing that there are others in the same situation. My vet has said many times that Cushings is a very individual disease regarding symptoms and treatment, definitely not one size fits all! The only reliable way I'm getting Sasha to eat is with wet food, pouches, frozen raw or home made, better in the evening than the morning and small meals more frequently. Good luck!

[Poppy'sMum]

Thanks for all the interest and helpful suggestions. I already slept better last night than for a long time!

I will definitely try Pepcid or similar and see if we can get to grips with inappetance. The information regarding lignans is very interesting and something I'd like to try - I'm a great believer in integrated care. The third chest x-ray showed very little improvement in the lung pattern from the first and she was never symptomatic of a lung condition. Iy was discovered by accident with the x-ray and came as a total surprise to the vet and me. The vet could not even pick up anything on the stethoscope despite the radiograph showing the worst lungs he had ever seen. She is quite energetic despite this, hence the vet concluded that it is possible she has had a long-term allergic asthma or similar that she has learnt to live with. She typically has an hour of off-lead exercise each day and hunts far and wide. Less so since Cushing's but still quite sprightly on a good day! She had an abdominal ultrasound as part of the early investigations late November and no abnormality was found. Kidney's were observed by ultrasound and full bloods show function is normal. I'll bear in mind suggestion of split dose - see how she does with Pepcid - and will mention to vet the anomaly of seeking out hot spots by the fire and Aga.

[molly muffin]

Some good news in the ultrasound being normal and bllodwork normal. Definitely not what we usually see with Cushing's
So strange about her not wanting to eat as soon as on vetroyl and everything being so normal except for the lungs that see to have been an issue for long enough to have her adapt to it.
At least it isn't a kidney issue with the inappetence
I hope the Pepcid takes care of that.

[Poppy'sMum]

Hi again, could anyone with experience of successfully medicating twice daily with Trilostane clarifiy the timing of doses. I guess technically they should be 12 hours apart but normal meal times are 9 hours apart, is that OK? Second question, how do the ACTH stim tests work as they are very strictly 4-6 hours post treatment - do you give a single dose on those days? Thanks!

[labblab]

On ACTH testing days, you should not change your normal routine. Continue to dose twice daily if that is your normal pattern, and just give the usual morning dose with breakfast, with testing to follow 4-6 hours later.

As far as the timing of twice daily doses, yes, dosing every 12 hours would be ideal. But I would think that it is more important that the doses be given alongside a full meal, so if redosing after 9 hours permits you to do that, I'd probably go for that.

Marianne

[Poppy'sMum]

It's a while since I posted and a lot has happened in between times so here's an update........having got Sasha up to 20mg a day Vetoryl (having worked up through 10mg for 17 days then 15 mg for 7 days) she became so inappetant, would only eat pieces of roast turkey without veg, I stopped medicating her 2 weeks ago last Monday. 2 days later in the evening she was lying in the lounge and 'howling' silently ie. putting her nose in the air and blowing but no sound - pain maybe. The following day I noticed her heart rate was so fast it felt like a flutter, went to the vet and she was in ventricular tachycardia 190bpm, bloods/electrolytes normal and bizarrely liver enzymes normal from highs 14 days earlier. She was given Vetagesic which made no difference to arrhythmia but completely zonked her out, her back legs were still folding under her 10 hours later, she couldn't drink for 5 hours and she was very subdued the following day. The following day we went to referral hospital and saw cardiologist who concluded heart was fine. Internal medicine specialist was able to clarify the Cushings situation as follows: the lung picture that had been treated as pneumonia is actually secondary lung cancer. Ultrasound revealed a 3cm mass on the adrenal gland and an enlarged lymph node near the kidneys. The mass is thought likely to be malignant primary, also the lymph node, though we declined tissue sampling. The adrenal tumour probably explains difficulty regulating her with Vetoryl. The normal liver enzymes were thought to possibly be the liver giving up. Heart arrhythmia due to either pain or catecholamines thrown off by the tumour/adrenals? They suggested putting her to sleep, I declined and brought her home. She was very sad for the following two days having barely eaten all week and with all the activity. After hand feeding her morsels of chicken and apple etc for a couple of days she regained her appetite and has been tucking into chicken and veg, hour walk off the lead each day flushing pheasants and chasing bunnies and is probably brighter and happier now than for the last 6-8 months. Her Cushings symptoms have slowly returned and she is now drinking more, though not nearly as manically or excessively as previously (but not feeding dry food must help in that respect - she's now on moist pouches), and the weakness in the rear is evident, shoulder muscles wasted just as I was building them back up, distended abdomen. I'm giving her SAMe and just started lignans but no Vetoryl at the moment. I'd be really interested in any comments / suggestions: the lung picture was first observed in late November when liver enzymes were normal and before Cushings diagnosis, so this situation has been around for quite a while, how long I wonder? My other question is how to treat adrenal tumour? I'm conscious that the elevated cortisol will lead to other probs and don't want her to simply fry, knowing what's best to do???? Please advise! Thanks.

[Joan2517]

Oh, poor Sasha...what a time you have had.

[Squirt's Mom]

I am so terribly sorry to hear about the cancer diagnosis. Since the lung cancer is considered secondary that means it came from somewhere else, as you know having said the adrenal tumor is probably the primary. This means that tumor has metastasized, or is spreading to other areas of the body. This alone will cause the cortisol to rise. Not all adrenal tumors are the type associated with Cushing's. There are those tumors that are simply cancerous, not Cushingoid. HOWEVER, the presence of any tumor on the adrenals (or anywhere else for that matter) can cause elevated cortisol resulting in cush signs. My own Trinket, who is a very tough little gal, has a growth on her left adrenal gland and her cortisol is off the charts and getting higher every time we have checked it. But I question whether she actually has Cushing's or if the cortisol is simply causing cush signs. She is on Lysodren which has shrunk her growth but not lowered her cortisol. But her dose is ridiculously low. She has COPD and many other health issues that are making her vets overly cautious....and her mom overly anxious. ;):rolleyes::eek::p Those other conditions could also be contributing to the elevation in the cortisol.

I am in a quandary about how to handle my own baby - I want that Lyso dose MUCH higher but her vets disagree; I worry that the Lysodren is causing more harm than doing good; I can't decide whether she does or does not have Cushing's; I am not always sure where to focus or which condition to work on first; I look at all her meds sometimes and wonder what would happen if I just stopped them all and gave her a break; I look at all of them and wonder if they should be changed or increased/decreased; I wonder if she is ever afraid; I wonder what I could have done differently. In the end, I treat her. I treat what she shows me needs treating, even if that is just treating signs not disease. We cannot cure her of all the things she deals with daily. So in the end I do all I can to make her life worthwhile, to give her contentment and joy...and simply love her.

I share all of this with you to say you have to do what is best for your baby. It is easy for me to say 'treat the cancer and ignore the rest' or 'just let her enjoy her days as long as she can without intervention' or 'you must treat the cortisol' or any number of other directives. But the bottom line is Sasha, and you. What are you willing to ask of her? What is she willing and able to tolerate? What are you willing and able to do? Some of the things I have to do for Trink are things many, many others simply would not have the wherewithal to do, but I can so I do. Her care is very, very expensive but I am willing to sacrifice what I must for her, to beg, to borrow, to sell my Soul if need be for as long as I can....not all are able nor willing to do that. From where I sit these are the things you need to consider before deciding where to start or what to do.

So talk to Sasha, listen to your own gut - those two things will guide you in the right direction. One of the many things I have learned from my years here is this - the decisions we make out of love are never wrong. Whatever you decide, we will be with you all the way.

Hugs,
Leslie and the gang

[Poppy'sMum]

Hi Leslie, thanks so much for your comprehensive response and sage words of advice. I'm very interested to read your comments about the potential for the cancer to cause the elevated cortisol but left wondering then how Cushings is defined. Given Sasha's age we don't feel that cancer treatment is a serious option, she has already achieved a good age for a labrador (12 and 3/4) so quality of life is our goal. She is back on antibiotics at the moment as she was struggling with breathing and has brightened up somewhat. She has her own chef (me!) and eats her chicken and veg with great gusto and enjoys short walks and mooching in the garden. She is gradually winding down but for now is happy and comfortable.

Thanks again for your wonderful support, it is greatly appreciated!
Bella