Unsure about diagnosis and next steps

[Mackenzie]

Hello! I’m new to this forum, but I see there is a wealth of knowledge here and am hoping to get some insight since I am unsure about what to do next for my recently adopted dog with possible Cushing’s. Mackenzie is a (seemingly) young 9lb terrier mix who has had PU/PD since he came to me about 6 weeks ago. He drinks approx 2L per day. His coat is somewhat sparse and dry and flaky, but that seems to be throughout the body and head, not limited to the trunk, and he has a dry nose and cracked paw pads. He had bloodwork and a urinalysis done, which came back normal except for slightly elevated glucose, WBC, grans, and phos, and slightly elevated urine pH. Vet prescribed amoxicillin for a possible UTI; this did not resolve the PU/PD. Vet then wanted to do a desmopressin therapeutic trial for diabetes insipidus. We asked whether Cushing's/Addison’s had already been ruled out, then they instead suggested an ACTH stimulation test. The results came back positive for Cushing’s, and the vet now recommends starting treatment with trilostane and following up in 90 days. Mackenzie has been full of energy and had a big appetite until he had the ACTH on Monday -- since then he has been lower energy and eating a little less. Not sure if it is related.

My questions/concerns:
1) Is all of the above sufficient for a positive Cushing’s diagnosis?
2) The vet did not suggest further tests to differentiate between pituitary and adrenal dependent Cushings, but it seems to me that it would be beneficial to know whether it could possibly be due to an operable adrenal tumor so that this can be cured with surgery rather than treating symptoms with lifelong meds.
3) What I have read online about trilostane says that follow up with an ACTH stimulation test should be done as soon as 10-14 days after starting therapy, so should I be concerned that my vet is advising 90 days?

Thank you all for any input!

[addy]

Welcome to the forum. I am sorry to read about your pup's problems but hopefully it will all get sorted out. It sounds like you have already been learning about Cushings and the drugs used to treat it.

I am a tad concerned about a vet wanting to start a pup on Trilostane and then says come back in 90 days after starting. You are very wise to question that.

Could you request copies of any tests done and post the abnormal results along with the normal reference range? Has a thyroid test been done? How high was the blood glucose? Was it a fasting test?

Sorry for all the questions.

What dose is the vet suggesting and what does you dog weigh?

Sometimes the ACTH test can make them feel a bit off.

[goldengirl88]

Welcome to the forum. Glad you found us, but I am sorry your baby is having troubles. I just wanted to start put saying that Cushing's is one of the most difficult diseases to diagnose. It is done with diagnostic testing, blood work, urinalysis, and ultra sound. This is also combined with an exam by your vet, and clinical symptoms. It is not just one particular test or exam, but many factors that go into this diagnosis.
Dogs with Cushing's do drink buckets of water, and pee enormous amounts, they are ravenous all the time, pot bellied, have muscle loss and weakness in the hind legs. The list goes on and on, but understand diabetes and thyroid problems also have some of these symptoms. I am puzzled as to why your vet gave up testing for the diabetes in favor of a test for Cushing's?? If it were my dog I would have had the diabetes and thyroid panel done to eliminate those possibilities. If your dog did have those issues you would want to treat them first, and then tackle the Cushing's issue. When your dog was tested if it had any
non adrenal issues going on it can skew the test and you could get a false positive. Dogs with thyroid issues have problems with their coat also, as I know you mentioned this. Diabetes can make them drink loads of water too. I would have to have those two issues either ruled in or out, then if the dog has either one, treat it and get it under control before testing again for Cushing's. Cushing's dogs are prone to infections, and urinary is one of them.Did you say the alk phos
was high? Cushings can have high liver enzymes. As far as the vet telling you he would put the dog on trilostane and check in 90 days that it just plain wrong. You would have an ACTH test in 10 to 14 days after starting treatment. You need to see how far the dogs cortisol has dropped as it may be going to low, and you can head off any problems. Please get us the abnormal numbers from all the testing done, it is a good idea to keep a file of your own. Also post the lab reference guide as they are all different. We can get a better picture what is going on and help you. Again if it were me I would not be starting on trilostane until the other issues are dealt with. I would also have the urine issue taken care of before retesting for Cushings. Addy already asked if the glucose test was fasting so I won't ask that again. We are here to help and support you thru this,
we are all in this together. Blessings
Patti

[Mackenzie]

Thanks for your responses. To hopefully give a better picture of what’s been done, here is the chronology of the different tests done to date, and I am specifying the abnormal values only.

Bloodwork:
PHOS 6.8 (2.1-6.3 MG/DL)
GLU 133 (60-125 MG/DL)
GRANS 19.9 (6.0-16.9)
%GRANS 85%
NEUT 18.1 (2.8-10.5)
EOS 1.8 (0.5-1.5)
“Moderate granulocytosis”

Urinalysis:
USG 1.005
pH 8.0 (5.0-7.0)
HEME 2+

Vet prescribed a course of amoxicillin. No change in PU/PD, so did a urine culture, which was negative.

I noticed tapework segments in his stool, so we did a fecal exam that came back negative, but we treated with Drontal Plus for the tapeworms based on the visual.

Vet said that the bloodwork and urinalysis ruled out diabetes mellitus, kidney disease, and liver disease, leaving us with the possibility of diabetes insipidus (DI) or psychogenic polydipsia (behavioral), and recommended doing a trial with desmopressin to diagnose the DI. I had read that it is important to rule out absolutely everything including Cushing’s and Addison’s before testing for DI, so I asked if these were already ruled out. This is when the vet recommended the ACTH stimulation test.

ACTH stimulation test results:
CORTISOL (PRE) 2.2 (1.0-6.5 ug/dL)
CORTISOL (POST) 25.2 (6.5-18.0 ug/dL)

[Mackenzie]

I forgot to answer: yes the tests were fasted. And I didn't ask about the dose for trilostane.

[molly muffin]

Hello and welcome to the forum. If you do move forward with trilostane, please be sure to start at a very, very low dosage. No more than 1mg/1lb maximum to start and with having few symptoms I would likely start even lower. From what I can tell the only symptoms appear to be drinking/leaking urine?
I too have some concerns that this is really cushings and that your vet has a lot of experience with the drugs and protocols.
Thyroid panel has also been done? I would do a full kidney checkup, perhaps even including an ultrasound. As there could be another reason other than cushings for the leaking.
My main thought would be to follow up with continuing to rule out other possibilities first. I know that you are currently on that path and I would continue it, until you are sure and if some point, you are sure, then start lower rather than any higher range for treatment.

Sharlene and molly muffin

[Mackenzie]

I have an appointment with another vet on Monday to review all tests results to date and discuss next steps. I will ask about a thyroid panel and abdominal ultrasound. I am not starting trilostane yet, and thanks for the advice on starting with a low dose if/when we get there.

The polydipsia/polyuria are the main symptoms right now, along with the sparse dry coat. He is not leaking, just frequently (about every hour) peeing large volumes of dilute urine and drinking about 10 times what is normal for his size. If he finishes his water bowl he will whine and look for more, including trying to climb into the bathtub because he remembers there was water there. At times he is more interested in drinking than eating. I am concerned that there has been a change in his energy level and appetite since the ACTH stim test performed last Monday. He has not yet returned to his feisty hungry self, and I don't know if that could be a side effect of the test, or related to the heat, or if whatever problem he has could just be getting worse while we fiddle with tests and things... Poor little guy has had a rough start to life and I am anxious to get him whatever care he needs.

[kaibosmom]

Hi and welcome. It sounds like you are on the right path with your vet appointment this week by asking about ultrasound and other tests. My dog, Kaibo, had high liver values that were our first clue to the Cushing's. He ended up having an adrenal tumour and now has diabetes as a result of the Cushing's. So having a dog that has had both, I can say that his appetite was ravenous from both diseases. Now that his tumour is removed and his diabetes is under control (well, somewhat) he is more normal when it comes to the eating. Anyway, I just want to welcome you and wish you luck as you continue the journey to see what is wrong with your pup.

Nikki

[Mackenzie]

We consulted with the other vet today. She said the clinical signs (PU/PD and sparse coat) plus the values on his ACTH stim test are sufficient for a Cushing's diagnosis. She recommends an abdominal ultrasound to check his organs and differentiate between pituitary and adrenal Cushing's before starting treatment. If it is pituitary, she would start him on trilostane and do a follow up stim test at 10-14 days. If it is adrenal he might need to see a specialist to pursue further diagnostics/treatment. I feel better now that I am seeing someone who seems to be following protocol and is open to discussing options with me.

If anyone has any info or advice on what to expect for the ultrasound, I would be grateful.

Nikki, the quote in your signature made me feel warm and fuzzy. "You never lose by loving. You only lose by holding back." I was struggling initially with the idea of adopting a dog knowing that he has a potentially fatal illness, wondering if I could withstand the heartbreak that would come with loving him and losing him. Your statement sums up why he is now part of my family.

[molly muffin]

So glad you found an vet who is on the same page as far as protocol.

I would just reiterate that if you start trilostane, start at No more than 1mg/1lb. We just see better results by starting lower and going up as needed, rather than starting too high and then having a crash. Much safer.

That is a Great quote Nikki has. :)

Sharlene and molly muffin

[kaibosmom]

Thanks! The quote got me through Kaibo's adrenal surgery and will get me through his hip surgeries too! My sweet hubby even had a necklace made with the quote and the poodles! I can't help with trilostane info as Kaibo was on mitotane. We had a really hard time regulating him on it and then we discovered that he had an adrenal mass. So as far as the ultrasound goes, I'm not sure what to say there either simply because Kaibo must have had about 4 before they saw the adrenal tumour. They always found enlarged liver for him and things with his pancreas. You have a huge heart to welcome this pup into your home knowing that there was health concerns. I'm glad you feel comfortable with the new vet. We've been through so many! Good luck. I'll be watching for updates.

[Mackenzie]

Mackenzie had his abdominal ultrasound yesterday. I am awaiting a copy of the ultrasoundist's full report, but here are the prelim results communicated by the vet: All organs looked normal except for an enlarged bladder. Adrenal glands were normal size. As I understand it, they were expecting to see both adrenals enlarged if it was PDH, or one adrenal enlarged or with a mass indicating it was ADH. At this time, and taking into account all tests done previously, they say they can neither confirm nor rule out Cushing's. So he is not starting meds until we explore further. They also are doing another urine culture, since the previous vet took the sample while he was still on antibiotics. Results in a few days. Next step they recommend is a urine cortisol:creatinine ratio test, for which I have been instructed to submit a urine sample in one week. The vet mentioned the possibility of Atypical Cushing's. They also mentioned the possibility of doing a U of Tenn test, and that we might eventually consider a desmopressin trial for diabetes insipidus if everything else turns out normal.

Questions for you ladies:
-- If he has PDH would the adrenals necessarily be enlarged?
-- How sensitive is the ultrasound at detecting adrenal abnormalities? Nikki, you mentioned you had done 4 ultrasounds before detecting Kaibos' adrenal mass!
-- For the cortisol creatinine test I need to collect a first morning free catch urine sample, but he pees overnight! So any urine I collect in the morning will not be something he held for a long period -- is that a problem?

I am relieved that he is now back to his playful, feisty self. Currently zipping back and forth across the house with a ball in his mouth! For at least a full week after the ACTH stim all he wanted to do was sleep.

Thanks everyone for your support! It is SO helpful to have a place to discuss these issues.

[Harley PoMMom]

Questions for you ladies:
-- If he has PDH would the adrenals necessarily be enlarged?

If he is in the early stages of Cushing's the adrenals may not be enlarged.


-- How sensitive is the ultrasound at detecting adrenal abnormalities? Nikki, you mentioned you had done 4 ultrasounds before detecting Kaibos' adrenal mass!

A good quality ultrasound/interpretation depends on a few things; the tool used, the technician performing it, and the physician interpreting it. The technician should be very experienced with capturing good windows and images. Likewise the one interpreting it should be the most experienced as well.



-- For the cortisol creatinine test I need to collect a first morning free catch urine sample, but he pees overnight! So any urine I collect in the morning will not be something he held for a long period -- is that a problem?

I'm providing a post from Dr. Bruyette, who is a renown Cushing's expert, on how the urine should collected for an UC:CR test:
Yes. The same would apply when looking at urine cortisols in the initial diagnosis of Cushings. Ideally 3 morning pooled urine samples collected by the owner at home and refrigerated.
Dave

Hugs, Lori

[kaibosmom]

I think part of the issue with Kaibo is that he is so young. We started "searching" for Cushing's when he was about 4. We were tipped off by high liver values when he was having knee surgery when he was still a pup (well 2 years old). He saw different vets for ultrasounds and I'm sure errors were made at times. I think the tumour was just not big enough to be seen because we were catching it so early. Also he had been on mitotane (Lysodren) for several months. We couldn't find the right dosage to keep him maintained. We ended up taking him off everything for a couple of months and finally saw the adrenal tumour...even though he had had an ultrasound two or three months prior. Ultimately it might just be that we were catching it early. That being said I'm glad we didn't wait too long for surgery since it seemed to grow fast once we found it.

[Mackenzie]

Thanks Lori and Nikki for your input! Unfortunately I have no idea what type of equipment was used and what the experience level is of the ultrasound tech. Mackenzie also seems to be young, but we don't actually know his age. Vet's best guess is 2-3 yrs old, but with the Cushing's possibility on the table we're wondering if he's quite a bit older and has just kept his boyish charm :)

I got results from the second urine culture: positive for two types of bacteria, one of which is strep. He has started a 14 day course of Simplicef. The vet said we could go ahead and do his UC:CR test this week as planned, but it seems to me that it makes more sense to hold off on that until his UTI is cleared up. For all we know the UTI is the cause of his PU/PD. Does that sound plausible? Even if he did have a positive ACTH stim is there any chance his troubles are simply due to this UTI and not Cushing's? Can you tell I'm hoping? :o

[Mackenzie]

Hello all,
I got the specific results from the urine culture. He is positive for two organisms: Beta Hemolytic Streptococci and Klebsiella Oxytoca. I went ahead and postponed the UC:CR until he finishes his 14 day course of antibiotics. Am I correct in doing so, because it was my understanding that we are supposed to treat any existing infections before proceeding with further Cushing's screenings?

[molly muffin]

I would definitely make sure that those 2 items are completely cleared up before pursuing the cushings diagnosis. Why? Because those two items could well be the cause of the symptoms you are seeing and they can cause the cortisol in the body to increase as it tries to fight the infections, would make an ACTH not worth the money spent on it right now.
If the vet suggests otherwise, you can just say, you'd prefer that nothing else be going on when you do cushings testing. That is a valid argument against doing anything till this cleared up.

So, glad you found the infections. They need to be completely gone, verified by a repeat culture.

Sharlene and molly muffin

[Mackenzie]

Thanks Sharlene! That sounds wise and the vet has agreed to wait until the UTI is cleared up. We will do a repeat culture one week after he finishes antibiotics, and if all is negative we'll do the UC:Cr.

Given all the test results we've had so far, do you agree that the UC:Cr is an appropriate next step? It sounded reasonable to me, as a way of possibly ruling out Cushing's and exploring other avenues (as I understand it, it can rule out Cushing's, but not confirm a positive diagnosis). But I'm wondering...if the UC:Cr turns out negative would Cushing's still be ruled out even though he's already had a positive ACTH stim? I'm just trying to understand the utility of this test at this point and how we can most efficiently get to a definitive diagnosis.

[molly muffin]

It would likely be less expensive to do a UC:CR than an ACTH. If the ACTH was done while there was UTI then it could be false positive.
I'd give it a little break in between after you confirm the UTI is gone completely and then do one or the other. You are right, a UC:CR can't confirm but it can rule out cushings. If you wanted you could repeat the ACTH, or you could do an LDDS, any of these once his UTI is gone could be helpful with diagnosis for cushings.

Sharlene and molly muffin

[Mackenzie]

Hello, I'm just back with a quick update. Mackenzie's PU/PD was unaffected by the course of antibiotics for the UTI. It has been a week since he finished his treatment, so I brought him back to the vet today for a repeat urine culture to be sure the infection was cleared before proceeding with further Cushing's screenings. While chatting with my vet I inquired about whether it would be a good idea to take him for a consult with a specialist to help with the diagnosis, since Mackenzie's case has not been clear cut. The vet agreed, and I have made an appointment with Dr. Bruyette for next week. Very much looking forward to this. My vet said that some specialists prefer the urine culture be done 14 days after the meds have been finished, so we did not do the culture today and will instead see what Bruyette recommends. If anyone has any advice on what, if anything, I should do in preparation for the consult I would appreciate it! Records have already been faxed, and my head is swirling with questions.

[addy]

You are in good hands and I am thrilled for you.

I always typed up a history, went through my dogs tests and highlighted the important results and commented on them from my perspective. Then wrote a summary of my conclusions, vets conclusions thus far, etc.

I probably over prepared.:o;)

write own your list of questions

[molly muffin]

Yep, I do the same thing, go in with a few sheets worth of information for them, but all nice and concise.

Sharlene and molly muffin

[Mackenzie]

Thanks Addy and Sharlene! As luck would have it, I am a big nerd and had already typed that stuff up for my own reference, so I will bring it along with me :) I will keep you all posted about the consult.
I wonder if I should try to collect the 3 day pooled urine sample for a UC:Cr and bring it with me just in case.

[addy]

Cant hurt- worse case you throw it out. I have brought in urine samples "just in case" and sometimes we did not need them.

[Harley PoMMom]

I took a recorder along with my visits to the IMS, I can't remember anything anymore! :o:eek:

Good luck to you and Mackenzie on your appointment with Dr Bruyette, he is a great doctor.

Hugs, Lori

[Mackenzie]

A recorder, that's brilliant! I would never have thought of it, and I wonder if I'll have the nerve to do it. Maybe on our second date ;)

I better get moving on practicing my early morning free catch this week. There's only about a centimeter or two between Mackenzie and the ground when he's doing his business.

[kaibosmom]

Isn't that the Cushing's guru vet? Ha ha. Good luck with the appointment. Sounds like you are prepared!

[Mackenzie]

Yes indeed we have an appointment with the "guru" and I have high hopes that he'll tell us what's what!

[kaibosmom]

Let us know how the appointment went when you can. Has it happened or coming up still?

[addy]

Yes do so we know what our guru vet thinks!!!:):):):)

[Mackenzie]

Hi and thanks for checking on us! Our appointment is tomorrow. I will be sure to post an update!

BTW I screwed up and wasn't able to catch the urine samples, so I won't be bringing that along with me. Not such a big deal since I was just trying to anticipate what comes next and speed up the process. In other news, we went ahead with the repeat urine culture through my local vet. Results negative, so he is cleared of his UTIs.

[molly muffin]

That is good news, no UTI at least! :)
Yes, we are all anxiously awaiting to hear what they have to say at tomorrows appt.

Sharlene and molly muffin

[Mackenzie]

OK we're back from our appointment. Wow, I feel so relieved that we are seeing a specialist. This sure beats second guessing everything the family vet says. I was expecting him to be uber knowledgeable, but I was very pleasantly surprised by how friendly and easy to talk to he was! I can ask a ton of questions, and I found that with him I didn't really need to because he was so thorough in his explanations.

He reviewed our files and here's what we learned: Mackenzie does not have ADH (because of the normal u/s results) and does not have Atypical Cushing's (because of the positive ACTH; we don't need to even consider doing the U Tenn panel). We need another test to confirm PDH, so he prescribed a UC:Cr (we all saw that one coming). If the UC:Cr is positive, we have a definitive diagnosis for PDH and can begin trilostane. We would also need to decide whether we want to do an MRI. He said that although unlikely, there is a possibility there is a large pituitary mass. Depending on what the MRI shows, the mass may be eligible for surgery (curative) or could be treated with radiation (to shrink it).

The doctor said our case is interesting because Mackenzie is so young. He estimated his age at approx 2 yrs. This brings up two significant possibilities:
1) There is a rare type of Cushing's that is meal induced and that is sometimes seen in young dogs because it is congenital (not sure I have that 100% right). This is diagnosed through a urine test, and he would have us do this test if the regular UC:Cr comes back negative. I am intrigued by this.
2) If he does indeed have a pituitary tumor, since he is young that means that at some point in the future we would begin to see effects from the tumor's growth. It makes perfect sense, but for some reason this information was a huge revelation for me. Because most dogs get Cushing's when they are seniors, if they effectively manage the Cushing's with meds they generally pass away from other age related illnesses. However if my Mackenzie is growing a tumor from a young age, even if we successfully control his cortisol with trilostane over the long term, we will not have addressed the tumor and all the many problems it could create in his brain. I didn't bother asking what those effects could be because I was busy having my major revelation right there in the office. Pituitary surgery is something to seriously consider in a young dog.

So, to sum up what's happening next:
UC:Cr. If positive, treat with trilostane (and consider MRI to check size of pituitary tumor). If negative, test for meal-induced Cushing's. If that's negative, test for diabetes insipidus via DDAVP trial.

I'd love to hear your reactions, and I am wondering if anyone here has experience with meal-induced Cushing's. I did a quick search on the forum and saw there was at least one member who suspected it, but it was ruled out through the urine test.

[addy]

Intriguing. I think I did not realize your pup was that young. I honestly cannot remember anything about meal induced Cushings:o:o:o:o I must have been absent that day:rolleyes::)

I think I keep thinking back to a blog by Dr. Peterson and a very young dog suspected of having Cushings. It may not be relevant to this at all. I'll go look for it and read it.

I am concerned about diagnosing Cushings in a two year old but this is coming from our "guru":confused::confused:.

I know Glynda will be by to comment while I go reread that blog.

[kaibosmom]

I have never heard of meal induced Cushing's disease. I can say Kaibo was young when his symptoms started and we had a couple of interns along the way say it was a "bad diagnosis" because he was too young to have Cushing's. Kaibo was young when he had luxating patella surgery and had abnormal liver values. So we were testing those every 6 months or so. Over time we saw Cushing's symptoms and ended up with the adrenal tumour diagnosis. For us we caught it so early they missed the adrenal tumour many times (as I stated before) and finally found it on an ultrasound. Sometimes I think Kaibo does have some bad genetics going on. I was told by his breeder that the litter was a surprise and they thought mom was done having babies. So I don't know. He's just had one issue after another. That being said he is resilient and sailing through his latest surgeries. Our diagnosis was only confirmed by LDDS and ACTH and ultrasounds so I have no knowledge of the test you are doing (only what I've read before). I'm glad you were able to see the "guru" and that you are comfortable with him. Personally, I didn't do much reading on pituitary tumours after I started suspecting we weren't dealing with one (and I was right). You have mentioned diabetes a couple of times...and of course, Kaibo has that so I can speak a lot about it if you need. I also suspected it way before it was diagnosed by looking at all of his blood work over several months I could see changes even though still in normal range at the time. He also had ketones in his urine which never seemed to be a concern (except to me and people on this forum!). Well I'm off to soccer. Thanks for the update! Nikki P.s. I see I just said Kaibo was young. He was 2 when first blood work abnormalities with liver function were noted, so same age as your pup

[Harley PoMMom]

I am confused, I have never read where an UC:CR is used to confirm a diagnosis of Cushing's. A LDDS (low-dose dexamethasone suppression) test is often performed along with another Cushing's test to diagnose Cushing's.

And, yes, I do remember reading about food induced Cushing's. Leslie has a post on a members thread with info regarding this: http://www.k9cushings.com/forum/showpost.php?p=122880&postcount=23

Hugs, Lori

[kaibosmom]

I thought the same thing! I was going to ask why a LDDS isn't being recommended as the next step

[molly muffin]

This is a thread from a member who suspected food induced cushings, it appears to be very rare. There might be more studies done on dogs now, but a couple years ago, most of the studies were on human subjects. However, yes there is such a thing and you basically will do a UC:CR after fasting, before feeding and another UC:CR from after the meal. In food induced cushings, the UC:CR prior to feeding will be negative and the one afterwards will be positive.

http://www.k9cushings.com/forum/showthread.php?t=3682

There was quite a bit of information found at the beginning of the thread by Marianne and Leslie.

Interesting, I too haven't heard of using UC:CR to confirm cushings as all the research I've read says that it can rule it out but not confirm it.

Glad you are in good hands and I too didn't realize we were talking about such a youngster.

Sharlene and molly muffin

[lulusmom]

My cushdog, Lulu, was diagnosed at three years old and she was symptomatic for many months prior to being diagnosed. It's rare in young dogs but it happens. I suspect that Dr. Bruyette may be stumped because the adrenal glands appeared normal in size and shape. Is that right? That would certainly rule out an adrenal tumor but not a pituitary tumor. So if Mackenzie has cushing's, it has to be pituitary based and just to make sure the acth stim test was not a false positive, he's ordered a UC:CR.

We became aware of a rare case of food dependent hypercortisolemia several years ago. One of our admins, Alison, brought it to our attention. It was an interesting case but we've not seen any other studies since then.

I'm keeping my fingers crossed that the UC:CR is normal and that you proceed immediately to the DDAVP trial.

[Mackenzie]

Thanks everyone for your input! And wow, that's actually quite a lot of info on food induced Cushing's! You guys are fantastic.

Just over 24 hrs after the euphoria of taking my boy to see a guru, and already I'm full of new questions. Sometimes wish I could turn the brain off and relax a little.

I don't know why he didn't recommend an LDDS, but I can ask. I understand that he wants to run another test to support the ACTH stim results before confirming a diagnosis. And I do understand that the UC:CR can be positive for a multitude of non-Cushing's reasons so it is used to rule out, not confirm. Perhaps he chose the UC:CR because it is the simplest test since it just involves at-home urine collection rather than a full day at the hospital. Perhaps Mackenzie's clinical picture screams Cushing's and he feels that this simple test is sufficient confirmation. I'm guessing.

Maybe it would be helpful here if I try to sum up his symptoms and test results that are consistent with Cushings: extreme PU/PD, low USG 1.005, sparse dry flaky hair coat, positive ACTH stim. And the stuff that is not consistent with Cushings: normal adrenals in u/s, normal ALKP and ALT, young age.

It is so interesting that you do have direct experience here with very young cushdogs, so even if something is rare it certainly is possible. Glynda, is there a thread about your Lulu so that I can read about her case? Also, I was thinking of Kaibo during the consultation when the doctor said the normal ultrasound results rule out an adrenal mass. I should have brought up the reliability of the u/s.

I collected the first urine sample this morning pretty easily. It's helpful that when he starts peeing it goes on and on and on...

[Squirt's Mom]

Lulu's thread -

http://www.k9cushings.com/forum/showthread.php?t=1638

[Mackenzie]

Thank you squirt's mom!

[Mackenzie]

We deposited the three urine samples today. Hoping for the best. Our little guy came along for the ride and enjoyed socializing with the people in the waiting room. Happy even to be at the vet.

[kaibosmom]

Now we wait! Keep us posted!

[addy]

Let us know, we are waiting with you:)

[Mackenzie]

I got a call from Dr. B today. UCCR came back with high cortisol. According to him, this along with the other tests done to date confirm a diagnosis of PDH. Our options now are to start trilostane 10mg/day or do an MRI to check for a macro tumor. One would only do an MRI if there was the intention to then treat the tumor with surgery or radiation.

Not sure how to make this decision. What generally prompts people to elect an MRI? What are the odds of a macro? Mackenzie currently has no neurological symptoms, but Dr. B said that by the time those signs appear it may be too late to do much about it. Plus, since he's young, even if it is currently a small tumor there is a good likelihood that it will grow to a large tumor at some point in his life. But when, we can't know. I'm putting my 1000 questions on paper, getting some sleep, and maybe tomorrow things will be clearer.

[kaibosmom]

Definitely tough decisions but you are doing the right thing. Take your time. Ask your questions. Wait for others on here to chime in. I'm so sorry that your sweet baby has Cushing's. Hugs to you.

[Squirt's Mom]

Is Dr B advocating the hypophysectomy for Mackensie? If so, I would pin him down and get him to tell me about all the dogs who have had this done in the USA as it is a fairly new and not often done procedure here. I would want to know EXACTLY what each pup was like before and after that surgery, how they changed, what they gained and what they lost, how long they lived after and in what kind of state - ie were they able to walk and run well, eat and void normally, interact with their people like before, and so on. I would demand the same info about the dogs who have undergone the radiation - were the results and the remaining life worth it for the pup and their families? If possible, I would want to talk to the parents of these pups and get their input as well - would they do it again in the same position or would they opt to let their baby be, letting Nature take Her course?

I have a problem with him telling you that by the time you see neurological signs it could be too late. While that statement in itself may be true, MANY cush pups live with PDH and NEVER have any further problems beyond the typical cush signs - they develop NO NEUROLOGIAL ISSUES AT ALL. To me, that comment comes across as a scare tactic - I hope I am wrong and Dr. B would not do that to you or anyone else.

[labblab]

Of course I am not Dr. Bruyette ;), but I am guessing that his comments were solely intended to reflect historical experience that once a pituitary tumor has expanded to a size which causes observable neurological changes, it is harder to achieve a good treatment outcome, at least with traditional radiation therapy. Here's an excerpt from a 2009 presentation by Dr. Ellen Behrend that addresses this in greater detail. Based on her comments (which reflect those of Dr. Feldman and sound similar to what Dr. B has said), in an ideal world, prior to beginning treatment, any dog diagnosed with PDH would have preliminary imaging performed in order to assess tumor size so as to facilitate tumor reduction for dogs identified with macros prior to the emergence of overt neurological symptoms. But in this less-than-ideal world, few people have money available to spend on this expensive imaging, especially if they know in advance that they would not opt for surgery nor radiation even if a macro is found. Anyway, here's the quote. Bear in mind that the article is five years old and only addresses radiation therapy since that was the standard treatment for macros at that time.


Routine pituitary imaging: Treatment for a pituitary macroadenoma, i.e., an adenoma > 1 cm diameter, requires
radiation therapy for local control of the tumor. Survival post-radiation depends on tumor size and the presence of
neurological signs before treatment—the smaller the tumor and the milder the neurological signs (or absent), the
better a dog will respond to therapy and the longer the survival.32 In 24 dogs with neurological signs secondary to a
pituitary tumor and treated with radiation therapy, 5 dogs worsened during therapy, 5 dogs had stable disease, and
14 dogs improved. After irradiation, a stable period was observed in 20 dogs, with 10 achieving complete remission
218and 10 partial remission. Time to improvement of neurological signs was 9–35 days after beginning treatment.32 In
dogs with PDH followed over 1 year, 6 dogs (46%) had tumor growth. Of 13 with masses visible on MRI, 4 (36%)
developed neurological signs within 1 year.33, 34 In response, a question has been raised whether all dogs with PDH
should have pituitary imaging to determine if a tumor is visible and if preemptive treatment should be considered.
The endocrinology text by Feldman and Nelson makes the following recommendations (for dogs with no
neurological signs at the time of diagnosis): All dogs with PDH should have CT or MRI performed at the time of
diagnosis. If no mass is seen, the dog should be treated medically with no follow-up imaging required. If a mass 3–7
mm is seen, medical treatment should be administered and imaging repeated in 12–18 months. If the mass is >8 mm
diameter, radiation therapy should be pursued. Medical therapy can be added if clinical signs continue for greater
than 3–6 months or if they recur.
35 No benefit has been shown to irradiation of tumors smaller than 8 mm.

http://secure.aahanet.org/eweb/images/AAHAnet/phoenix2009proceedings/pdfs/01_scientific/044_CONTROVERSIES%20IN%20CANINE.pdf

The bottom line, I think, is that over time, all pituitary tumors are expected to increase in size to a greater or lesser extent. So a young dog diagnosed with PDH will have a longer period of time for potential tumor growth to take place. If an owner believes he/she would be interested in surgery or radiation in the event that a macro is identified, there would be benefits to proceeding with the imaging early -- even prior to the emergence of neurological symptoms in order to achieve the best outcome if the imaging reveals a larger tumor. If surgery/radiation is not perceived to be an option, then the imaging of the head becomes a moot point unless the owner just has an interest in knowing the status of the tumor.

Marianne

[Mackenzie]

Thanks all. Leslie, those are all fantastic questions that get right to the heart of my concerns about risks and quality of life. I did not at all feel that I was being pressured into considering surgery… I think Dr. B was just presenting me with all options. Maybe he talked about the possibility of addressing the tumor (whereas the GPs did not) because he has direct access to and experience with the surgical and radiation options. I like having the big picture, but it does bring up some bigger questions, doesn’t it. Marianne, no you are not Dr. B, you may well be even better! Thanks for the great data and wow, that was such an interesting document you linked.

Interesting that the recommendation by Feldman is that in a dog with PDH and no neuro signs if an MRI doesn’t show a tumor no repeat imaging is needed and only medical treatment should be pursued. If no tumor is seen, wouldn’t you want to recheck for growth at some point (6mos-1yr)? If an MRI shows nothing on Mackenzie today, that wouldn’t buy me peace of mind for the coming months/years because the tumor is expected to grow.

Also interesting that it says normal serum ALP can be used to rule out HAC. Mackenzie had normal ALP, so does that put him in the small minority of cushdogs with a normal value or does that call into question his diagnosis?

Do we have any idea what the probability of a macro is, and would it be more or less likely in a very young dog? Have members here had positive outcomes with radiation for a pituitary tumor? I am TERRIFIED of the risks. I’m concerned not just about survival, but about potential long term side effects, neurological deficits, anything else that could go wrong and give him a poor quality of life. I don’t want to go after the tumor at the cost of my guy’s special spark. He is the happiest feistiest dog I know, and appears perfectly healthy with the exception of the PU/PD, so at this point in time it is hard to imagine subjecting him to risky surgery or radiation. Yet not treating a growing tumor could mean horrible things to come at some point in the future. I don’t have any clue what the odds are.

[pansywags]

I read everything through a macro filter since my dog had one, but I interpreted the comment as meaning that *if the tumor is a macro*, the chances of successful treatment is lessened by the time neuro issues present. I might be personalizing his statement to fit my dog's situation, though.

Buttercup was treated with radiation at UC Davis with good results. You can read her story here http://www.k9cushings.com/forum/showthread.php?t=5850

[Mackenzie]

I just wanted to give an update on Mackenzie. He started Vetoryl 10mg four days ago. So far I am not seeing any adverse effects (thank goodness), but it does appear that his PU/PD has already started to diminish. Is it possible to see this change that quickly?

[Dixie'sMom]

YES, it is possible. I saw improvements in my dog about day 4 also and by 2 weeks she was considerably better with regard to her symptoms. I am glad to see the meds are working for McKenzie. :D

[molly muffin]

Every dog is different but yes some symptoms can respond very quickly to the medication.

It's wonderful that he is doing so well.

Sharlene and molly muffin

[Mackenzie]

Thanks Sharlene and Suzie. I'm astounded to see that his water intake has already diminished from about 2.5L to 1.5L per day. Still drinking too much for his size, but I was concerned that seeing a big change so quickly might mean his trilo dose is too high for him... I guess I should just hold tight until our ACTH stim scheduled for a week from today. I worry about everything, can't help myself.

I love Dixie's stink eye in that avatar photo!!

[Dixie'sMom]

Thanks! Yes, Dixie is a little stinker herself. :) I don't think the fact that MacKenzie responded so quickly necessarily means the dose is too high. Like I said, Dixie did that and at her 14 day ACTH her values were in the normal range. No where close to being too low. I do know the others have said that it could drop for 30 days so we will test again to make sure things are OK. Dixie has day by day changes. Today is her first day ignoring her food bowl, but she has drank more water today, so I've been confused about her all day. haha! She has been eating some snacky things too because I was "testing" to make sure she would eat. And she is... she is just uninterested in her kibble. So I know what you mean by watching every little thing and worrying. I think we will get better about this as time goes on. I'm so glad to hear that MacKenzie is still doing well. You will feel better after he gets his ACTH at 10-14 days. You need to post a picture of him. I love seeing all the little doggie faces. Hang in there! You're doing good. :)

[Mackenzie]

Thanks, that does ease my mind that Dixie saw fast results and tested in the right range. I am watching my little guy like a hawk and admit that I keep second guessing everything. I still sometimes even wonder if this is really Cushing's, if you can believe it. I sort of wince while I give him his morning capsule, hoping I'm doing the right thing. There are so many things about his file that are not consistent with the typical Cushing's picture.

[Dixie'sMom]

I understand exactly how you feel. Even tho Dixie's tests all showed "Classic" Cushing's, i have been staring at her pot belly for a few days now wondering if the ultrasound missed something. I'm not sure that enlarged liver of hers is going down any. :( So yes, I get it.

I can't do anything to reassure you that you have the right diagnosis, but I know that you are watching her closely and if anything goes sideways, you will be on top of it. Sometimes that's all we can do, right? Hugs for you and your sweet boy. We will both get better at this in time. (I hope!)

[Mackenzie]

Today is day 14 on Vetoryl and Mackenzie went in for his ACTH stim test this morning. Should have results by the end of the week. Hoping this time he does not suffer from side effects from the test. Looks ok so far.

[Dixie'sMom]

I assume MacKenzie is still doing good on the Vetoryl? I hope he isn't having any nasty side effects from the ACTH today. Be sure and let us know what his test said. I bet it will be perfect. :)

[Mackenzie]

Yes he is still doing well. The water intake does not seem to have changed since it decreased somewhat on day 3. So it has not yet gone down to normal levels. This time he didn't appear to suffer any side effects from the ACTH stim. For the first (diagnostic) stim test, I suspect the vet dumped the whole cortrosyn vial into his tiny 10 pound body. This time they diluted it and measured his dose for his weight. Although I was disappointed that they refused to divide and freeze the remainder for his future tests. Expensive stuff in the trash!

[Dixie'sMom]

I'm glad MacKenzie didn't have any side effects but dang I know you hated seeing the rest of the medicine go to waste. Have you heard anything about his results yet?

Some days Dixie drinks more than others. And some days she wants to eat more than others. I guess their body fluctuates in how much cortisol is producing? My vet told me that Dixie may always drink and want to eat more than a normal dog. I personally think she could use 5 more mg of meds but I don't want to rock the boat since shes doing so well otherwise.

[labblab]

Well, that's a darn shame about the waste! Why did they refuse to freeze the remainder?

Marianne

[Mackenzie]

They said that question had come up previously so they contacted the manufacturer (I can't remember which one they were referring to) who said it is not recommended because it would alter the agent. $200 of my $300 bill for the stim test is the cortrosyn.

Also, just wanted to share with you that I had another blood panel done on Mackenzie right before he started trilo, since it had been a few months and I wanted a baseline for his start on meds. ZERO abnormal values. Is that unheard of in a cushdog? Part of me thinks: wonderful, we caught this early before it started causing any organ damage. The other part of me thinks: what if this ain't Cushings?

Results of the stim test expected today.

[Mackenzie]

Stim test results from day 14 on trilo:

Pre <1.0 ug/dL (1.0-5.0)
Post 1.8 ug/dL (8.0-17.0)

"POST-TRILOSTANE: Pre & post cortisol levels between 1.5-9.1 ug/dL
indicate optimal control."

Vet says the numbers are lower than what we want, particularly the Pre value, and recommends decreasing from 10mg to 5mg per day and rechecking in 30 days.

I'm somewhat surprised at these results and don't know what to think. Experts??

[molly muffin]

Definitely too low and endanger of a crash at those levels. I would actually stop and wait for symptoms to come back, recheck levels before starting again and only at a lower dose.

Was this Dr. B's recommendation to move down to 5mg and not to stop and wait?

hugs
Sharlene and molly muffin

[Dixie'sMom]

Oh my heavens! Well that is a scary surprise. I'm glad to hear he is feeling good but like Sharlene, I think I would stop until his labs show he needs meds again and then start at 5. Your instincts are very good where MacKenzie is concerned. You've doubted the diagnosis from the beginning and you were worried about him going too low once you started meds. And your instincts were correct. I sure don't know enough to say whether he truly has Cushing's or not, but I do know you are a very perceptive mom when it comes to your baby. Maybe a wait and see approach? Hugs to you. I know you are very worried and confused.

[Mackenzie]

Dr. B recommended lowering to 5mg and retesting in 30 days. The GP suggested stopping the trilo altogether for 30 days and then consider doing an LDDS to confirm the cushing's diagnosis.

Are the levels dangerously low even though the post value is within what the lab cites as optimal range (albeit at the lower end)?

It makes the most sense to me to stop the meds at least temporarily if his levels are already too low (and it is what I am forced to do anyway since I only have 10mg capsules and the 5mg would need to be ordered). But I feel very strange that I am taking the advice of the GP over the cushguru. And the advice I'm getting from you Sharlene is the same as what I'm thinking. What am I missing here??

I'm terrified by those low values, but I also don't want to be overly conservative at the expense of his health.

P.S. Dixie's mom, you always know just what to say to make me feel better!! Thanks for the comforting words.

[My sweet Ginger]

I'd stop Vetoryl. The risk of not giving Mackenzie the drug temporally outweighs the risk of overdosing him with this potent drug in my book.

[labblab]

Hi again from me! In deciding what to do, my first question would be, how is Mackenzie behaving? Also, were his blood chemistries ("electrolytes") checked alongside his ACTH? If he is giving no indication of suffering from low cortisol, then if it were me, I would allow him the few days break it will take to order the 5 mg. capsules and then proceed as Dr. B has suggested -- although not waiting 30 days to retest if Mackenzie seems "off" in any way beforehand.

Mackenzie's "pre" value is indeed too low, but his "post" value is right at a point that is borderline OK/good. According to Dechra, it is above their lower cut-off of 1.5; more conservative clinicians such as Dr. Mark Peterson don't want to see cortisol levels lower than 2.0. Cutting the trilostane dose by 50% ought to allow for rebound of the cortisol level to a healthier plateau while still offering control. As I say, though, a big wildcard is behavior. Dr. Peterson tells us that he has seen dogs with low cortisol for whom cortisol never rebounds sufficiently to prompt a return of symptoms or the need to resume treatment. But from what you have said thus far, you have not seen indications of low cortisol, and instead Mackenzie's thirst and urination still remains somewhat excessive. For that reason, if he were mine, I'd hate to see him go all the way back to square one again in terms of full-blown symptomology before resuming dosing. If you are really worried about him crashing, though, and his electrolytes were not checked last week, you could return him for that single blood draw to make sure that there is no danger in that regard.

I'm especially puzzled by your GP suggesting a month without meds prior to a LDDS. The fact that 10 mg. may be a higher dose than Mackenzie needs doesn't negate the diagnosis. Many dogs need dose-tweaking along the way. It sounds as though, behaviorally, all you've seen is a positive response to the trilostane thus far. So to me, that would be backdoor confirmation of the diagnosis rather than the reverse.

Marianne

[Mackenzie]

My Sweet Ginger, that is EXACTLY what the GP said and it is the guidance that made the most sense to me when discussing our options.

Thank you so much, Marianne, you are so knowledgeable and I am grateful for your insight. To answer your questions, behaviorally I have seen no change other than the decrease in drinking on day three, and then seemed to plateau. He is overall very playful and active. He did not have his electrolytes checked and the vet never mentioned that (is this supposed to be done at every stim test?)

I think this lack of any overt signs of cortisol dropping too low in the face of cortisol actually dropping too low is what concerns me most. I am worried that if he continues on meds, by the time there is an observable impact on his behavior we would already be in the danger zone. I was shocked to learn his cortisol was low because if anything I was expecting that it hadn’t fallen low enough, given that he is still steadily drinking buckets – his only real symptom. So I’m not very worried about reversing gains in his symptom control since there wasn’t much in the way of control.

I hear what you’re saying about dogs needing their dose tweaked. But does it make sense that he continued to drink buckets even while being close to a crash, and couldn’t that mean the meds were not working on his PU/PD as would be expected?

I think the GP is questioning the Cushing’s diagnosis because Mackenzie presents as an unusual case, and many parts of his picture would have led Cushing’s to be ruled out right from the beginning and go straight to pursuing a DI diagnosis. Maybe it’s also because she is new to his case and did not participate in the diagnostic phase, so wants to take a step back and look at things with fresh eyes. Also, I can be a real pain in the butt with all of my questions and doubts so it’s entirely possible that I am wearing her down :) I browse around the k9c site and I see lots of cautioning of new members that their Cushing’s diagnoses should be called into question because the dog has normal bloodwork, has fur that grows back, etc. Taking it all into account, it doesn’t seem to me that Mackenzie fits the cush description, but maybe I am looking at him through Mommy goggles and can’t see clearly.

Here again is his snapshot for your consideration:
-- 10lb terrier aged approx 2-3 yrs, vivacious and frisky. Recent leg amputation and neutering. His past is unknown; he was found abandoned in a box with a broken leg, so some sort of trauma. Very hearty appetite, but has spit out kibble on occasion.
-- Big time PU/PD
-- Low urine specific gravity 1.005
-- Urine culture negative
-- Completely normal routine bloodwork
-- Normal abdominal ultrasound
-- Positive ACTH stim
-- Positive UCCR

I have now written a novel so I will stop there. Thanks for any and all input, support, etc. You are all fabulous.

[labblab]

Absolutely, if you are feeling nervous about the diagnosis and treatment, it is best to take a step back and address your questions and concerns. In response to your questions, here are a couple more thoughts of mine.

First, Dechra recommends that the electrolytes be checked alongside every ACTH. In reality, I doubt that many vets perform the testing that regularly. However, I do think it's a good idea at the beginning of treatment and certainly any time it is feared that cortisol has dropped too low and/or dogs are behaving abnormally. Trilostane lowers aldosterone as well as cortisol, and it is aldosterone that controls the balance of potassium and sodium in the body. It is possible for those electrolytes to be imbalanced even when cortisol levels seem to be OK. So that is why it is good to periodically perform both tests.

There is no question but that Mackenzie does not present in a typical fashion. However, in the same way that the other testing has not uncovered common Cushing's abnormalities, it also has not uncovered any other cause for the elevated cortisol and PU/PD besides Cushing's. The LDDS is actually even more likely than the ACTH to falsely return a positive result in the face of other, nonadrenal illness. So even if you retest and the LDDS is positive, I don't know that you've gained a lot more information. If the LDDS is negative, then you still have the quandary of a dog with elevated cortisol for reasons unclear. A small percentage of dogs with Cushing's test negative on the LDDS, most likely when the disease is in the early stage, as may be the case with Mackenzie. The LDDS would certainly be one more piece of the puzzle to factor in, but I just want to warn you that under these circumstances, it may not be a definitive answer for you. In relation to the puzzling case of one of our staffer's dogs, Dr. B. has told us just this week that it is not uncommon to have "discordance" in test results, even when dogs truly have Cushing's. I believe this is what makes it such a hard disease to get a handle on.

As far as the lack of total resolution of the excessive thirst and urination, there are mechanical reasons why it may take time for you to see even more improvement. And not to discourage you, but some dogs never totally return to normal. But this is way too early in the treatment phase to assume you would not see additional improvement given more time. However, if you wish to take a break from the trilo and administer the DI test, you may surely do so. As far as I know, though, DI would not account for the elevated cortisol.

As for the fear that Mackenzie will continue to drop his cortisol even on a lowered dose, you could certainly opt to test him sooner than 30 days even if you decide to proceed with the 5 mg. Dechra recommends retesting two weeks after any dosing change.

It may sound as though I am favoring your continuation with treatment, and that is not necessarily the case. I just want you to be aware that there may be no definitive diagnostic answer in view of Mackensie's less than typical presentation. That's why you consulted with Dr. B., to benefit from his experience with a multitude of Cushpups with varying presentations. I'm sure there are times when he misses the boat, too. But has your new vet talked with him in detail about her doubts and concerns? If not, that might be really helpful to you all.

Marianne

[Squirt's Mom]

If your gut is whispering that something has been overlooked or not considered, causing the Cushing's diagnosis to be suspect in your mind, that is a sign to trust in my book, a voice to listen to very carefully. Stopping the treatment and pursuing deeper testing would be my choice in your shoes if my gut were telling me something is still not right. No one knows our babies better than we do and when that still small voice inside starts talking, we need to learn to listen. Marianne gives excellent advice and I would trust her input without doubt. But don't ignore that little voice in your gut as you ponder things. ;)

[Mackenzie]

Thank you Marianne and Leslie. Sorry I did not respond sooner. This has given me a lot to consider, and we have by default taken a break from the meds. I felt too uncomfortable to continue trilo straight away even at a lower dose. Yes, the GP vet had been communicating with Dr. B at every step, and even reached out to other IMSs to compare notes. I did send an email to Dr. B with a couple of questions a little while back and he never replied. Maybe I'll try again. With the issues you raise Marianne about the utility of an LDDS at this point, I'm not sure what to do next. I guess the options are:
- restart trilo at 5mg and do an ACTH after 10-14 days
- LDDS as an additional (but questionable) confirmation of Cushing's before restarting trilo.
- ACTH to check how high cortisol has rebounded before restarting trilo (is this useful?)
- try the drops for DI to appease my nagging whispering gut (but as you said, DI might not account for high cortisol, and the vet says you only test for DI if HAC is ruled out, which it is not! so I guess this is not a good option.)

His behavior after stopping meds: it appears his drinking has gone back up to previous levels (which would possibly be further backdoor confirmation, although we have unfortunately dropped the ball on monitoring this closely as he has also been drinking from my other dog's bowl so I don't have this quantified). However for a while his appetite decreased, which I did not expect. He walked away from kibble when he normally hoovers it right away. No idea what that means.

On top of this my mom has just been diagnosed with breast cancer. So now I am learning all I can about that as well... Blah. Just trying to keep my head screwed on straight, and wishing I had studied medicine in school since I am basically trying to get a medical degree from google these days.

So to sum up: I'm dazed and confused!

[molly muffin]

You certainly have a challenging case with Mackenzie. I don't think I would start, even with the symptoms coming back stronger of drinking, to go forward with a lower dose even, without knowing what the cortisol level was at currently. I just think that would be more risky than I'd be comfortable with.

It's true, my molly has high cortisol and has never presented with the typical cushing symptoms, and every LDDS test has been negative, yet we are not treating since more serious symptoms of hypertenison and proteinuria is now occurring. These cases can be a huge challenge. If the ACTH shows that the cortisol has come back up, then a lower dose might be the route to go and then retest in a couple weeks at most to see where the cortisol is at. Maybe he is just very sensitive to the drug. (one possibility).

I'm sorry to hear that your mom has breast cancer. My mom and my sister both had breast cancer, both were survivors. My mom had a masectomy and radiation and my sister had lumpectomy and chemotherapy. For each one, the treatment used worked. It depends on a lot of different factors as to which way to go, size, type, any potential spreading, etc. It is a lot to learn and dealing with two serious things, cushings and cancer must have you on a rollercoaster of emotions.

Hang in there. You're doing wonderfully. Always listen to your gut instinct.

[Mackenzie]

Thanks Sharlene. I need to find some time to read through your whole saga with Molly. Sounds like she is as complicated as it gets. I am hoping for the best as you begin her treatment and will be following along.

It's crazy how ever since my mom was diagnosed I am noticing how prevalent breast cancer really is. Doesn't matter how many media campaigns talk about awareness, nothing gives you awareness like a diagnosis very close to home. I'm glad to hear your mom and sister are both well. I suppose this means you are being monitored very closely yourself.

[molly muffin]

Hello, I noticed I said not treating, but i mean, we just started treating due to the BP and protein loss. Our saga has been very smooth, with not a lot happening, except the odd thing here and there and then bham, this occurs and we're now into full out control mode.

Yes I am monitored pretty closely myself, and glad of it. Actually neither of the two had what is considered genetic breast cancers, but age related breast cancer. Guess there is a difference in whether a genetic marker is or isn't present to determine that, so it's a crap shoot if I will have any problems with it, just like anyone else in the world I guess, but they do check every year and recheck in 6 months if there is an area of concern.

hugs
Sharlene and molly muffin

[Mackenzie]

Thanks, Sharlene, I did understand that you have started treating. I will visit your thread to see how things are going but I think I last saw so far so good!

Regarding your suggestion to check Mackenzie's cortisol before restarting meds, would you recommend doing that via ACTH stim or UCCR?

[labblab]

Hi again! I am not Sharlene, of course, but I'm never shy about throwing out an opinion...;) :p

If you want to test before restarting the trilostane, I think you will want to go with an ACTH. The UCCR has value as an initial diagnostic test, but research has not yet validated its use as a general tool after treatment has begun. This study is an example of the uncertainties associated with trying to use UCCRs to identify optimal trilostane dosing.

http://onlinelibrary.wiley.com/doi/10.1111/j.1939-1676.2009.0374.x/abstract

I think the ACTH will be a more specific and accurate indicator of the status of Mackenzie's adrenal function.

Marianne

[molly muffin]

I think Marianne is right. The ACTH is what you use to monitor and I think you would want to have a the same thing that you will be using to do a direct comparison for reaction purposes of the cortisol levels.

How are things going with your mom? Okay I hope.

hugs

[Mackenzie]

Thank you both! Marianne, you have such a great arsenal of info. I really appreciate your input and I always do hope you'll chime in with advice!

Mom has an MRI scheduled for tomorrow, then surgery hopefully within a couple of weeks, after which point we'll know more about what additional treatment is needed if any. I understand radiation is likely. We're all trying to stay positive and taking things one step at a time!

[Dixie'sMom]

I just wanted to say "hey" and see how all of you are doing? I'm thinking your mom has already had her MRI? I hope her prognosis is good and the MRI gave some clues as to the best treatment for her. You know I will be blowing up the Heavens with prayer for her so please keep me posted if you need any extras. I have a great group of prayer warriors I can call on. :D:D:rolleyes:

How is Mackenzie? I hope she is feeling good and no new nasty symptoms of anything. It sounds like Mom needs your attention right now so its really good that Mackenzie doesn't require constant monitoring at the moment. Don't forget to take some time for YOU. Hugs and Love...

[Mackenzie]

Hi Suzie, thanks so much for checking in on us. The little guy is doing well. Happy as a clam as always. Still of course going strong with the PU/PD but no other symptoms developing. As I type, he and my senior dog are raising a ruckus roughhousing. You're right, it's a very good thing I don't need to be closely monitoring his treatment right now because my attention is most definitely spread in different directions. My mom goes in for surgery this coming Tuesday, then will start radiation afterwards. I know this is a cushing's forum, but any positive vibes you can spare for my sweet mom's operation would be much appreciated.

[judymaggie]

I will definitely be sending healing vibes to your Mom for her surgery and treatment! Yes, this is a Cushing's forum but am sure you have been able to see from other posts that everyone here is really caring, not just about our pups, but about all of us two-legged folks.

Hugs to you during this stressful time!

[Squirt's Mom]

Sending prayers for your family and the medical team, healing and strengthening energies to your mom! Please let us know how things turn out.

btw - we are family here so this is not out of line to request a prayer for your mom. ;)

[molly muffin]

We are oozing "good vibrations" for you mom and a speedy recovery to follow.

Take some deep breathes. In out in out. Find that inner place of calm. (Often helped to find with a glass of wine, music, baths with bubbles, whatever works for you)

You've got a family of Cushing folks right there with you.

Hugs

[Mackenzie]

Thank you all so much. You ladies are wonderful and I truly appreciate your support. I am at my mom's this evening and take her to the hospital early in the morning. We're staying positive and can feel your good vibrations!

[molly muffin]

Sending out tons of good vibrations. Good luck tomorrow!!

hugs

[Squirt's Mom]

Hope all goes well today, sweetie. Let us know when you can. Prayers and healing white light flying your mom's way.

[Mackenzie]

Thank you thank you thank you. She came out of surgery like a champ and is doing well. We'll get the path report in a couple of days. Again, thanks for your support. I love this forum, you ladies are the best.

[judymaggie]

Great update! Will continue to send healing thoughts for a smooth recovery and negative path results.

[Squirt's Mom]

Great news! Praying the path report is all clear and this is behind you all for good very soon.

[Dixie'sMom]

That's great news! Please keep us updated as you can. I'll continue to lift your Mom up in prayer. Be sure to take care of yourself also! Hugs!

[molly muffin]

Whooo hoooo Great news!! :)

hugs

[Silliam]

Just saying hello
As a dog owner whose dog has pituitary dependent cushings
As a person who is taking medication used in pituitary adenomas
And the aunty of a beautiful 20month old with the nasty kind of Pituitary tumour.
So if you ever have questions about micro macro and the effects of tumour growth or what stuff is close to the pituitary just give me a PM

[Silliam]

Also recorders can be used for your mums doctors too. Although some doctors have an ego that won't allow for it. I just ask them to please write out a summary of what they have said (they know how to do this they do it for GP's and patient files all the time) I also would not be afraid to keep saying no I still don't understand that. One nice doctor ended up drawing me a picture I could take home I found it easier then a bunch of words.
I know what you mean about feeling like your going to med school, if only you could get credit for all the things you will learn as a carer.

[molly muffin]

I just wanted to pop in and wish you a happy holiday season, peace, health and happiness. Hope all is going well with the your mom and Mackenzie.

Hugs

[Mackenzie]

Hi all, I'm just popping in to wish everyone happy new year and to thank you for your support and well wishes both for Mackenzie and my family. With everything going on as you know we've taken a little break from his meds and testing, but will see the vet again soon to determine the next course of action. The good news is that he remains as happy and energetic as ever. No change in his PU/PD either, and it hasn't been an issue as far as house soiling because he has in/out access through the doggie door. His coat also appears improved compared to when we first took him in -- shinier and less dry/sticky. When I look at photos from a few months ago I can see that fur has filled in on his face and around his eyes.

As far as my mom, I'm thrilled to share that her surgery path report showed clear margins and no lymph node involvement. She has started radiation treatment and will continue throughout this month.

Hugs and hope your furkids are doing well. I'll make some time this week to check on your threads...

[Dixie'sMom]

Great News! Thanks for the update. It sounds like everything is under good control. I know you are so relieved.

[Squirt's Mom]

Good to hear from you again! And it is great to hear your mom and Mac are doing as well as they are. Sounds like things are going very well for you mom and I know that is a huge relief.

[molly muffin]

Happy new year. :).
Yay. Glad to hear that your mom is n going so well and Mackenzie is doing well too.

Hugs