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Kelley
05-09-2009, 04:20 PM
Hello everyone,

I have an 8 year old Jack Russell Terrier who has been diagnosed this week with Cushings. Our journey to this diagnosis began in January, the vets were initially looking for a kidney problem and originally diagnosed him with Chronic Kidney Disease. When all the kidney tests came back negative, they decided to throw in a Cushing's test as well. They told me before the test it was likely to come back negative and we would still have no diagnosis. They were very surprised when the Cushing's came back positive.

Our primary vet has sent the results to the Small Animal Hospital at University of Florida for review. We had been working with the vets there as well trying to diagnosis his suspected kidney problem. We don't know yet what type of Cushing's he has and we are feeling really worried about all this right now. From what I've read, the treatment for Cushings is pretty tough to go through.

I'm pregnant right now with our first child, but he's been our baby for 8 years. I'm trying to keep positive and not let all the negative stuff get to me but it's hard. I'm so worried about him and would just appreciate some information.

I don't' have a copy of the labs yet, but I'll get a copy of them on Monday.

Thanks in advance,
Kelley

frijole
05-09-2009, 04:59 PM
Heh Kelley!

I am going to make your day. Treatment of cushings is only tough when vets aren't experienced and get in over their heads.... it really isn't that bad. I am delighted your vet has forwarded results to a specialist. There are different types of cushings and they are treated differently so what you are doing right now is the best thing you can do for your dog. You want to be sure of the diagnosis before treating and you want a vet that has experience.

My dog is over 15 (schnauzer) and she has been treated using lysodren for 3 yrs now. She's a happy little thing and her only problems right now come from old age - not cushings. :)

So don't fret. Continue to post and ask questions. The more you know about the disease the better but there is no rush to treat. Congrats on the pregnancy!

Kim

k9diabetes
05-09-2009, 06:49 PM
I believe that's UF in Gainesville and I have seen them do some very fine work with endocrinology. I was impressed with Dr. Schaer so hope that's who will be taking a look at Barney's case.

Natalie

MiniSchnauzerMom
05-09-2009, 10:17 PM
Kelley,

Just wanted to stop by and say "hi and welcome" to you and Barney. Sounds like you've got Barney in good hands for testing and diagnosis. As Kim said, post and ask questions. We're here to help!!

Louise

P.S. Congratulations from me too on your pregnancy.

Kelley
05-10-2009, 02:54 PM
Thanks so much for the quick responses!

Kim-Thanks so much for the reassurance. I'm SOOO happy to hear of a dog that is doing well! I've told a couple of people about Barn's diagnosis and they just say, "I'm so sorry" as if it's a death sentence. :(

Natlie-you're exactly right, it's the Small Animal Hospital is at UF in Gainesville. If we have to go back there for testing, maybe I can request Dr. Schaer. Currently we are working with someone else who specialty is kidney diseases, but I'm thinking they'll refer us to another doc.

Thanks so much for the welcome and congrats Louise!

I will continue to post his progress and let you know when they diagnose which type of Cushing's he has.

I'm so glad to have found this forum. I'll keep you updated and I really appreciate the responses.

Kelley

Kelley
05-12-2009, 07:54 PM
Here's the latest update on Barney...
The vet just called me, she heard back from the vet at the University of Florida. Apparently, the resident presented Barney's case in grand rounds. There was some disagreement as to how to proceed with his treatment and now they aren't so sure that he has Cushings even though his test was positive. He's going for another test on Friday, the low-dose dex suppression test.
I've requested the results from his other test and they are going to fax it to me tomorrow. I'll post the results when I get the fax.
The vet did say that if the second test comes back positive, they recommend Trilostane for a traditional treatment.

Kelley
05-12-2009, 08:12 PM
They faxed over the results this evening. I'd really love to hear feedback about these results. All were way above normal and the note on the test say "these results indicate presence of increased adrenal activity-severe"


Test Result (baseline) Result (post ACTH)

Cortisol 166.0 229.7

Androst- 4.0 9.9
enedione

Estradiol 114.4 110.4

Progesterone 1.61 3.74

17OH Progest. 1.03 3.5

Aldosterone 653.6 727.1

The top of the page for treatment options says "Steroid Profiles in the Diagnosis of Atypical Cushing's Disease" The vet has never mentioned atypical...can anyone help me understand what that means?

Thanks in advance for your advice and help.

Kelley

AlisonandMia
05-12-2009, 08:37 PM
Hi,

I've just posted below the reference range for those tests - would you be able to just check that the reference ranges that show up on Barney's tests are the same as these one's.



Cortisol:
Baseline: Normal 2.1-58.8
Post Acth: Normal 65-174.6

Androstendedione:
Baseline: Normal 0.05-0.57)
Post Acth: Normal 0.27-3.97

Estradiol:
Baseline:30.8-69.9
Post Acth: 27.9-69.2

Progesterone:
Baseline: 0.03-0.49
Post Acth: 0.10-1.50

17 OH Progesterone:
Baseline: 0.08-0.77
Post Acth: 0.40-1.62

Aldosterone***
Baseline: 11-139.9)
Post Acth: 72.9-398.5)



Alison

AlisonandMia
05-12-2009, 08:45 PM
Just compared Barney's results to the reference ranges I just posted and, boy, do I see what they mean by severe!

Have you had an abdominal ultrasound done to rule out an adrenal tumor? (I'm not saying that these results suggest that necessarily at all but it is something you'd want to have checked out if you haven't already.)

I would think with the big elevations in all those hormones that actually Trilostane will not be the best treatment because although it lowers some of the hormones it elevates others as a side effect and this can cause a continuation or even worsening of symptoms especially over time. Dogs with these sorts of results on this testing are usually treated with Lysodren and melatonin and lignans to help address the estradiol which is sometimes not addressed completely by the Lysodren.

The UTK will have included a treatment recommendation along with the test results.

Debbie's (stardeb55) dog Harley had similar results on his testing and he is being treated with a combination of those three treatments and is doing well - I'm sure you will hear from her soon.

Alison

Kelley
05-12-2009, 08:50 PM
Here are the normal ranges on the report:

Cortisol:
Baseline: Normal 2.0-56.5
Post Acth: Normal 70.6-151.2

Androstendedione:
Baseline: Normal 0.05-0.36
Post Acth: Normal 0.24-2.90

Estradiol:
Baseline:23.1-65.1
Post Acth: 23.3-69.4

Progesterone:
Baseline: 0.03-0.17
Post Acth: 0.22-1.45

17 OH Progesterone:
Baseline: 0.08-0.22
Post Acth: 0.25-2.63

Aldosterone***
Baseline: 11-139.9
Post Acth: 72.9-398.5

Kelley
05-12-2009, 08:57 PM
Thanks so much for the reply Alison!

Barney had an ultrasound in March of this year when they were looking for kidney problems. Here's the results:
Ultrasound of the abdomen revealed that both kidneys appear normal. A single nodule was found in the spleen and determined to be reactive lymphoid hyperplasia.

The UTK report has 12 treatment options listed. I wonder why my vet said she would recommend Trilostane? It says on the list "Lysodren may be preferred for atypical Cushings". Maybe I got them mixed up??

StarDeb55
05-12-2009, 09:03 PM
Kelley, I'm the Debbie that Allison mentioned. Barney is, indeed, Pit Cushing's + Atypical which is what my Harley is. Some of Barney's values are higher than Harley's were, while Harley was higher on others. Harley is being treated with Lysodren + melatonin +purified lignans. Lysodren is used to control the cortisol but it will also control most all of the other associated hormones because of the common biochemical pathways that these hormones share. The problem is estradiol. Estradiol has non-adrenal sources of production such as fat cells besides other tissue. Lyso will control the adrenal production of estradiol, but does not affect the non-adrenal sources of estradiol. This is where the use of melatonin + lignans comes into play, so that the non-adrenal production is controlled. I totally agree with Allison that Trilostane usually isn't an appropriate choice of treatment for a pup with these kind of values on a full adrenal panel. It would be very helpful to get a copy of the treatment recommendations.

Has Barney had an abdominal ultrasound? If not, I would strongly recommend that as your next step. Not only will you be able to get a look at the adrenal glands, but also all of Barney's internal organs, so you can get a better idea of his overall health. Based on my experience during the diagnostic phase for Harley, I disagree with the need for an LDDS at this point for Barney. All Harley had done to diagnose was the full panel & an abdominal US. In fact, I even asked the IMS that I was using at that point if she needed to do the LDDS, she said nope, all she needed was the US & the full adrenal panel results.

Hope this helps.
Debbie

frijole
05-12-2009, 09:45 PM
Kelley

I don't have much to add but want to reinforce what Alison and Debbie just said. If you had the UTK panel done there should be treatment recommendations from Dr Oliver who is THE guy in treating atypical cushings. I agree that it doesn't seem like doing the LDDS test has any value - am curious why they are recommending it. Again, get the treatment recommendations from that lab report and maybe it'll be explained. I also agree that the preferred treatment for atypical cushings is not trilostane. It is easy to get all of these drugs confused so don't worry if you did. We all make mistakes. :p

I'm just glad you found us!

Kim

gpgscott
05-12-2009, 09:57 PM
Hi Kelley,

Sorry your Barney is having issues.

You need the treatment recommendation from UTK.

Better to wait until you have a good diagnosis than to commence a treatment too early.

It appears to me that Trilo is not indicated as you have elevations of intermediate hormones.

Scott

SasAndYunah
05-13-2009, 01:36 AM
Hi Kelley,

Sorry about the problems Barney's having. I understand that at this time it's not exactly clear with wich medication Barney will be treated. But I wanted to let you know that if the treatment will be with either Trilostane or Lysodren, that neither of these meds should be given/handled by pregnant women. (or women planning to become pregnant sometime in the future for that matter) I'm pretty sure your vet will also tell you this when the time comes to start treatment but wanted to let you know anyway. Congrats on the pregnancy :) And the best of luck with barney...

Saskia and Yunah,
The Netherlands.

Kelley
05-13-2009, 10:03 AM
Thanks for the info everyone. I hadn't heard about not handling the meds while pregnant, thanks so much for that. The treatment options on the report from Dr. Oliver are as follows (I wonder if these are in order of preference? anyone know?)
1. Ultrasound (we had one done in March)
2. Melatonin
3. Melatonin Implants
4. Flaxseed oil with lignans
5. Maintenance dose of Lysodren
6. Lysodren traditional treatment
7. Trilostane (it says in the notes that Lysodren may be preferred for Atypical Cushings)
8. Ketaconazole
9. Selegiline
10. Specific hypertrinism treatment
11. Ovarian remnant detection (he's a boy...)
12. Retained testicle detection

StarDeb55
05-13-2009, 10:17 AM
The recommendation sheet isn't in any specific order. There should have been a comment that was something to the effect that say treatments #2, 3, 4 are recommended.l

Debbie

Kelley
05-13-2009, 11:49 AM
Unfortunately, there aren't any solid recommendations from Dr. Oliver. The comments say: Various treatment option considerations are attached. Some veterinarians consider items 2-6.

Squirt's Mom
05-13-2009, 12:10 PM
Hi Kelley,

Did the ultrasound say anything about his adrenal glands? These are the glands looked for in an U/S on a cush pup so I am curious as to what they had to say about them.

As for the treatment options, it sounds as if Dr O would use either melatonin and lignans, or those plus the Lysodren as maintenance or with the usual loading approach. On Squirt's results, it states which numbers are "recommended" but I have noticed some of the latter results say "some veterinarians consider items..." like yours does. Still, whether recommended by Dr O directly or whether stated as it is on your sheet, I would stick with his ideas, which doesn't include Trilo. As high has some of her hormone levels are already, that would be playing with fire, IMHO. So I hope you simply got confused with what your vet said. Very easy to do with all these new terms, meds, etc! ;)

You're doing a great job, so keep it up!
Hugs,
Leslie and the girls

PS. Since you are pregnant, please use gloves if you use the Lyso and wash your hands and arms off good after dosing, ok? We want all in your house to be well! :)

Kelley
05-13-2009, 12:21 PM
The ultrasound just said that his kidneys are normal and a nodule was found in the spleen. I wonder if another ultrasound should be done to focus on the adrenal glands?

For the meds, she said she didn't want to use the one that destroyed the adrenal cells, just the one that inhibits them...does that help clear it up? I'm thinking if she suggests the Trilo, I'll have to disagree. Barney is also on an ACE inhibitor for his blood pressure and I read that Trilo is contraindicated with that as well.

SasAndYunah
05-13-2009, 12:30 PM
Hi Kelley and Leslie,

I really want to emphasize that a pregnant woman should not be handling Lysodren (or Trilostane) at all. Not even wearing gloves. I thought that maybe it was "just" a Dutch regulation but found the same on an American site...

"Cautions:
Side effects include lethargy, weakness, and vomiting. If they occur, stop using the medication and contact your veterinarian. It should not be used in pregnant or nursing animals. Always wear disposable gloves when giving Lysodren to your pet and wash your hands after handling this medication. Pregnant women, or women trying to get pregnant should not handle this medication."

I really like this to be very clear...

Saskia and Yunah :)

StarDeb55
05-13-2009, 01:26 PM
Kelley, I'm certainly glad you mentioned the ACE inhibitor as you are absolutely correct that Trilo is contraindicated with this type of BP med. I would certainly think another abdominal US is warranted. I would take the $$$ you would spend on an LDDS, & use that for the US.


she didn't want to use the one that destroyed the adrenal cells

I must respectfully disagree with the vet who said this. Lysodren does necrose enough of the adrenal cortex where the cortisol is produced to stop the overproduction of cortisol, but the med does not destroy the adrenal gland by a long shot. My first Cushpup, Barkley, was successfully treated with lysodren for nearly 8 years, crossing the bridge at 15. As I mentioned yesterday, Harley, is also being treated with lysodren, & is doing well. It has been a little over a year since he was diagnosed.

Debbie

afortunato
05-13-2009, 02:00 PM
My dog recently had been tested for Cushings. He is presently a diabetic dog. So, as of yet he was considered borderline. He also has cancer. Since 2005 I found this wonderful Chinese Vet. in Speonk, LI that has been treating my dog for his cancer with herbs from China. In 2005 the traditional vets only gave him to the end of the year. When he had a problem with his Trachea, he gave him herbs, when he had a problem with the bleeding from his nose (cancer) he gave him pills to stop the bleeding. And if he was to have cushings, he has herbs for treatment for the cushings disease. And when he was diagnosed with Pancreatis, he gave him the pills. SO I believe there is another way to treat animals without traditional drugs. I know alot of vets from diff. states call him with problems and he mails out the herbs to them for treatment. I had a co-worker how's dog had lymphomia, in 2007, he went to him and he is still here and doing wonderfully with the herbs.

Squirt's Mom
05-13-2009, 03:01 PM
Hey Kelley,

Saskia is absolutely right.... you shouldn't handle the meds at all. Thanks Saskia! :)

You will need to get your hubby to dose Barney for you, clean up any time he throws up after a dose, which hopefully won't happen anyway, and just to be on the safe side, perhaps pick up after him in the yard if this is presently your job. It seems like the amount of drug in the feces isn't much if any but I'm sure someone here will know about that for sure.

Hang in there!
Hugs,
Leslie and the girls

Kelley
05-14-2009, 03:43 PM
Barney goes in for his LDDS tomorrow morning, but I'm not quite sure why they are doing it. From what you've all said and everything I've read it dosen't seem necessary. The vet told me that the vets at the U of F were in disagreement as to weather or not Barn has Cushings, so they want to do another test for sure. I'll post the results as soon as I know!

Thanks for everything!

StarDeb55
05-14-2009, 04:21 PM
Kelley, none of us are vets, but Barney's UTK panel clearly indicates that he is both Pit Cushing's + Atypical. As I mentioned when I first posted to you, the IMS who diagnosed Harley told me she did not need the LDDS, she could make the diagnosis on the UTK panel results + an abdominal ultrasound. I, frankly, don't understand why the vets think they have to do the LDDS. I do need to point out to you that even though the LDDS is considered to be the "gold standard" for diagnosing Cushing's, the test has one big problem. It can show a false positive in the presence of non-adrenal illness.

Kelley
05-14-2009, 04:30 PM
That's why I'm so confused Debbie :confused:
I don't' understand why we're doing the test but the vet said it's necessary. I'm going to ask about starting with another ultrasound instead, we'll see what they say.
I'll keep you updated.

Wylie's Mom
05-14-2009, 05:00 PM
Hi Kelley,

I've never posted on your thread before, but I wanted to tell you that I had the UCCR & ACTH stim done initially with my former vet. My current GP vet saw the results (plus low urine specific gravity, elevated liver enzymes from former vet records & clinical signs) and she suggested I go straight to getting an ultrasound. I remember she had mentioned that the other vets in her practice always do the LDDS, but she felt that it was unecessary (at least, in my case). I'm not sure why, but now I'm guessing that it was because I had already done the ACTH stim test. (If I had found this site earlier, I would have done the UTK panel in lieu of the initial ACTH stim test.;))

Basically, I'm with Debbie - use the $$$ for the ultrasound.

-Susy

Squirt's Mom
05-14-2009, 05:27 PM
Hi Kelley,

The ACTH is a stimulation test while the LDDS is a suppression test. The ACTH test shows what cortisol the adrenals have in reserve. Alison, I think it is, describes the ACTH as squeezing the adrenals like a sponge to get all the cortisol out. That is the post number we see with an ACTH. With the LDDS the adrenals are suppressed to see how they handle being told to stop releasing cortisol. In a normal dog, one which doesn't have Cushing's, the adrenals will respond by slowing down. In a cush pup, the adrenal glands won't stop releasing cortisol even tho they have been suppressed by the dexamethasone. So the ACTH simply shows the amount of cortisol in the adrenals while the LDDS shows how well the adrenals are functioning. Since some of the docs involved in Tee Jay's case question the initial diagnosis, perhaps this is why they want another LDDS...to see how the adrenals are functioning now. I'm not saying they are right or wrong to want this, but thought I might offer an idea as to why.

From my own experiences with the ACTH and Squirt, her levels got high until that tumor was removed, then it went down dramatically. We hear about non-adrenal illnesses sometimes causing elevated cortisol and I didn't fully understand that until last year when all that was going on with Squirt. Now I do understand that sometimes an illness or problem other than Cushing's can cause cortisol levels to be in the range for a Cushing's diagnosis based on the ACTH only. If we had proceeded to treat with Lyso based on the UTK panel cortisol reading of 32.8 ug/dl instead of having the ultrasound (further testing), no telling what may have happened or if she would still be here.

It is extremely frustrating and can get expensive, but making absolutely sure of what you are dealing with first will make the journey much easier down the road...that's my thinking anyway. ;)

Hang in there!
Hugs,
Leslie and the girls

Kelley
05-20-2009, 09:19 AM
I got a call from the vet today and the results of the LDDS test were negative. I don't have the results yet, but she said they were all within normal range.
She called the University of Florida for some advice. The vet there plans to get in touch with the University of Tenn. for some advice and direction.
I asked her to explain to me why the positive results on the other test don't mean he has Cushings for sure. She said the levels on the first test do show all the signs of Cushings, however, he has no other "clinical signs". His adrenal glands are perfectly normal and the LDDS test was normal.
I asked her if we could at least start the melatonin and FSO as recommended on the first lab test. She said she didn't have a problem with starting the FSO but would hold off on the melatonin.
What are everyone's thoughts on this? The vets seem really stumped.

Thanks so much,
Kelley

StarDeb55
05-20-2009, 04:21 PM
Kelley, melatonin will suppress the production of cortisol to a certain extent, just not as much as lysodren or trilostane. So if Barney is indeed normal, then I can understand the reluctance to even use melatonin. I think a consult with Dr. O & his colleagues at UTK is an excellent idea. Dr. O is more than willing to consult with attending vets or correspond with owners concerning their questions. A number of us in this group have actually e-mailed him with questions & concerns regarding our pup's treatments. He responds very promptly, & is an absolute angel when it comes to offering his help & advice.

Is their any possibility you can get a copy of those LDDS results & post the numbers for us?

Debbie

Wylie's Mom
05-20-2009, 05:35 PM
Hi Kelley,

If you go ahead with the FSO - you might want to just get the lignans. Many FSO's don't have much of the lignans (if at all). Please read the treatment option sheet (same one that I PM'd you earlier):

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/Steroid%20Profiles%20for%20Diagnosis%20of%20Atypic al%20Cushing's.pdf

Most of us use the Flaxseed Lignans from Vitacost and some are trying out the Flaxhulls listed on the sheet.

I see that Lysodren was also listed as options (both maintenance or regular) on your UTK comments. Do you and/or your vet have reservations on trying Lysodren?

-Susy

Kelley
05-20-2009, 06:35 PM
Hi Debbie-I'll get the results when I get back home tomorrow; I'm out of town. I'll post them when I get them. Maybe I'll email Dr. O myself and see what he says! Would that be stepping on my vets toes at all?

Hi Susy-The reason the vets have reservations about the Lysodren (as well as all the other treatments) is becuase they aren't comfortable with his diagnosis of Cushing's yet. I'll be sure to use the ligans, thanks again for the info you sent me.

Harley PoMMom
05-20-2009, 06:52 PM
Hi Kelley,

When Harley was diagnosed with atypical cushings, my vet never dealt with such a case, she was very happy that I was consulting with Dr. Oliver via e-mail, even asked me to forward the e-mails to her. My vet has even called Dr. Oliver herself and consulted him about Harley.

IMO, If consulting with Dr. Oliver would make you feel better about Barney 's diagnosis, treatment or just make you feel better, I would do it.

Wylie's Mom
05-21-2009, 06:26 PM
Hi Kelley,

This is from the UTK Treatment option sheet:

5) Maintenance dose of LysodrenTM. May be useful in combination with melatonin and lignans to help lower sex steroid levels other than estradiol, along with suppressive effect on cortisol level. NOTE: Monitor cortisol levels periodically as would be done with Cushing’s treatment.
6) LysodrenTM, traditional treatment for Cushing’s disease. Very effective in lowering cortisol, progesterone, androstenedione and 17-hydroxyprogesterone levels. NOTE: Estradiol is not always suppressed by LysodrenTM. A baseline estradiol level 1 month post-Lysodren will determine efficacy.

I believe UTK included Lysodren as an option for Barney because besides the cortisol, he has the other three hormones elevated.

If you do try Lysodren, someone had posted earlier on your thread about pregnant women should be careful handling Lysodren. I didn't hear that before (but I propbably wasn't paying attention 'cause I'm not pregnant)...but it makes sense to be cautious.;)

-Susy

Kelley
06-03-2009, 10:42 PM
So Barney's Cushings has now been confirmed. The treatment plan is 1. Melatonin (regular, not rapid or extended release): Give 3mg by mouth twice daily.
2. Flaxseed hulls with lignans: 1/2 tsp. on/in food once daily.
3. Lysodren (prescription) 500mg tablets: Give 1/4 tablet by mouth twice per WEEK (so every 3-4 days).

He won't go back to the vet for 6 whole weeks after we start this! We're supposed to monitor his water intake and urine output. If we see some changes, we're to take a urine sample to the vet for testing.

I've seen a lot of posts about having the prednisone on hand just in case. The vet didn't mention this (I wasn't home, she talked to my husband). Should I ask her about this? Also she didn't mention any side effects to look for. Do you think this is because we aren't doing the loading dose of lysodren?

Thanks so much for all your help and advice. I'm nervous about starting the medicine and I'm glad to have all of you to go to for your advice!

PS-I won't be touching the Lysodren, my hubby will be in charge of the dosing. The vet also advised for him to give Barn the melatonin and flax seed too.

lulusmom
06-04-2009, 12:30 AM
I've seen a lot of posts about having the prednisone on hand just in case. The vet didn't mention this (I wasn't home, she talked to my husband). Should I ask her about this? Also she didn't mention any side effects to look for. Do you think this is because we aren't doing the loading dose of lysodren?

Yes, prednisone is not normally prescribed for atypical dogs because there is no loading involved. This is probably why your vet did not mention what side effects to watch for either. I don't suspect that you will see any side effects with maintenance dosing but it is always a good idea to monitor your dog. The usual side effects would be extreme lethargy, inappetance, diarrhea and vomiting. I think Barney will do just fine on the regimen that has been suggested. Good luck.

Glynda

Kelley
06-04-2009, 01:26 PM
Thank you Glynda! He'll take his first dose tomorrow and I'll be home all day to keep an eye on him!

Kelley
06-13-2009, 08:51 AM
Hi Everyone,

Barney took his 3rd dose of Lysodren last night and seems to be doing ok. His drinking/urinating hasn't decreased at all, anyone know when we should expect to see this? The only thing we've noticed is he seems to have an itchy face! He scratches it and rubs it with his paw. This could also be because the mosquitoes are out in full force lately. Has anyone seen this side effect before?

I also started his flax this week. I'm going to start his melatonin next week. I wanted to introduce 1 new thing at a time so if he's having some adverse reaction, we'd know what was causing it. I understand from my doc that the melatonin should be 3mg regular (not rapid release or anything). My question is, do any of you have a particular brand that you like? My doc sent a caution about supplements when she emailed the instructions, but didn't give a recommended brand or anything.

Thanks so much for your support through all this! I feel so much better informed about the medications thanks to all of you!

Have a great weekend!
Kelley

Squirt's Mom
06-13-2009, 11:21 AM
Hi Kelley,

We use a brand of melatonin called MRM and I find it at Whole Foods. I had trouble finding one that was just melatonin without any vitamins etc added in. I don't know that the additions would make a difference, but I felt better with one that was just melatonin.

I think you are wise to add one at a time...I did the same thing, but Squirt had no reactions to the new meds at all. You may see Barney get a bit more sleepy with the melatonin but that is to be expected so don't let that worry you.

We use the purified lignans in a capsule and I just open both the melatonin and lignans, mix it in her food in the mornings, and she eats it right up....of course it never had a chance to run either! :p

Thanks for the update and do keep up in the loop! Can't wait to see Barney's results!

Hugs,
Leslie and the girls

Kelley
06-27-2009, 11:29 AM
Hi Everyone,

Just wanted to give an update on the Barn-dog. He's finishing up his 3rd week of treatment and he seems to be doing fine. He's had 2 episodes of vomiting 2 days post dose, but the vet seems to think it's coincidental since the episodes were so far after the dose. We're still keeping a very close eye on him and only dose him on day's where either mommy or daddy with be home all day (I work from home so it's not as hard as it sounds).

He's eating his ligans and melatonin with no problems at all. He dosen't even notice that they are on his food!

We've seen absolutely no change in his water intake or urine output. Am I correct in the understanding that it could take 6 weeks or longer for us to see any changes? He'll go back to the vet in about 3 weeks for some tests and a check up. I'm hopeful that we'll have some positive results; I really want our new baby boy (due in Sept) to get to know my first baby boy, Barney.

Thanks for everything!
Kelley

gpgscott
06-27-2009, 01:01 PM
Hi Kelley,

It is good to hear that there have been no adverse effects and I think your Dr. is right also that a single episode of vomiting two days after admin of the Lysodren doesn't sound that suspicious.

I am sorry you are not yet seeing postitive results and hope you do soon. For Moria it was into the second month or so of treatment but she is not getting the maint Lysodren just melatonin/lignans.

Best wishes for Barn, and a happy pregnancy to you.

Scott

Kelley
07-28-2009, 08:48 AM
Here's the latest update on Barney...
He's been on:
1. a maintenance dose of 125mg of Lysodren twice a week
2. 3mg Melatonin twice a day
3. Flaxseed Hulls/Ligans in his food once a day
The only symptoms of Cushings that Barney has ever had are increased thirst and water that looks like urine, so we've been watching that closely. We honestly haven't noticed a change in either one. We thought *maybe* his urine was looking a bit more yellow.
He went to the vet yesterday for a check and the vet said Barney is concentrating his urine better! That's good news I think!
We're going to keep him on this same regimen for another month, then do the just ACTH stim test (not the full atypical panel) to send to UT. The vet said we might have to increase his dose of Lysodren if we don't see any results from that test.

Any thoughts?

Harley PoMMom
07-28-2009, 10:51 AM
Hi Kelley,

Is this UTK panel below the last one you had done? If so, IMHO, I would have another full panel done, all these numbers are high and I would want to know if any of them are coming down. If Barney's intermediates/sex hormones are not coming down then that might be the reason his symptoms are not subsiding. Hopefully the "others" will state their opinions on this as well. I added the normal ranges and reference ranges in parenthesis.


They faxed over the results this evening. I'd really love to hear feedback about these results. All were way above normal and the note on the test say "these results indicate presence of increased adrenal activity-severe"


Test Result (baseline) ~ Result (post ACTH)

Cortisol 166.0 (2.0-56.5) ~ 229.7 (70.6-151.2)


Androst- 4.0 (0.05-0.36) ~ 9.9 (0.24-2.90)
enedione

Estradiol 114.4 (23.1-65.1) ~ 110.4 (23.3-69.4)


Progesterone 1.61 (0.03-0.17) ~ 3.74 (0.22-1.45)

17OH Progest. 1.03 (0.08-0.22) ~ 3.5 (0.25-2.63)

Aldosterone 653.6 (11-139.9) ~ 727.1 (72.9-398.5)


The top of the page for treatment options says "Steroid Profiles in the Diagnosis of Atypical Cushing's Disease" The vet has never mentioned atypical...can anyone help me understand what that means?

Thanks in advance for your advice and help.

Kelley

Hugs.
Lori

Kelley
07-28-2009, 12:35 PM
Yes, that is the last UTK panel we had done.
I'll ask the vet if she thinks we should do the full panel and if not, why....

Harley PoMMom
07-28-2009, 01:18 PM
Hi Kelley,

I believe since his Aldosterone was so very elevated that I might have his electrolytes checked, I would like to see what his potassium (K) and sodium (NA) levels are and the NA/K ratio. Aldosterone is the principal of a group of mineralocorticoids. It helps regulate levels of sodium and potassium in your body–i.e. it helps you retain needed salt, which in turn helps control your blood pressure, the distribution of fluids in the body, and the balance of electrolytes in your blood.

This is JMO, tho, like I said, I am hopeful the others with more experience will "voice" their view on this.

Hugs.
Lori

PS. From rereading your thread I see Barney does have high blood pressure, another reason why I would get the full panel done, or at least his electrolytes, also how much does Barney weigh? bc the hulls and melatonin can be adjusted per Dr. Oliver guidance, maybe Barney needs more of both?

Squirt's Mom
07-28-2009, 04:03 PM
Hi Kelley,

If it were me, I would go ahead and have all those hormones checked, not just the cortisol. His levels were so very high and you say he is still drinking and peeing often tho his urine is concentrating better.

Squirt's first UTK panel was in 8/08 and she just had her first repeat about a month ago or so. But her signs disappeared after a splenic tumor was removed and her cortisol is back to normal as well. However, even with no signs apparent her recent test came back with the estradiol and progesterones still elevated more than Dr O liked. So he switched her to the hulls from the purified form to see if that will work on them, and if not she will start a maintenance dose of Lyso.

Barney is already on Lyso and the hulls, so I would certainly want to know where his levels were now. Just MHO tho.

Hugs,
Leslie and the girls

Kelley
07-28-2009, 04:11 PM
Hi Everyone,

Great information about the electrolytes. Per his last chem panel (23 March) his sodium was elevated 153 meq (ref 144-152) and his potassium was also elevated 5.1 meq (ref 3.7-4.8).
Also, his ALKP and cholesterol were high. Could these be elevated due to one of the elevated hormones?

I'm going to request that we at least get another chemistry done at the next visit.

Barney weighs 24 lbs.

Squirt's Mom
07-28-2009, 04:17 PM
Hi Kelley,

Yes, those levels could be due to elevated aldosterone and the only way to check that level is with the UTK panel. As Lori said, aldosterone plays a major role in regulation and balance of the electrolytes.

Hugs,
Leslie and the girls

gpgscott
07-28-2009, 05:50 PM
Kelley,

Sorry to be so late in relying to you.

The full panel which you have provided us indicates elevated cortisol and all of the other five hormones.

His electrolytes should not be an issue with these labs.

I think this is a case of conventional Cushing's, has there been an abdominal U/S?

Scott

AlisonandMia
07-28-2009, 06:54 PM
Just a quick question: I see Barney is on an ACE inhibitor - when did he start on that? Was he already on it when the UTK panel was done and was he on it in 23 March when the chem panel was run?

I believe that mild dehydration can cause elevations in sodium and potassium (together) on a blood test. I'll check with Deb but that looks like it could have been the case with the results from the chem panel on 23 March. It looks to me like the potassium and sodium are balanced but just that they are both on the high side. If you could post all the results from that chem panel (even the one's that were in normal range) that might help Debbie tell if there was a little bit of dehydration (probably just needing a drink) was present.

Alison

Kelley
07-28-2009, 07:32 PM
Hi All-

Scott-yes, he had an abdominal ultrasound which was normal with the exception of a reactive lymphoid hyperplasia on his spleen. You say that you think Barney has conventional Cushings. Can you explain the difference between atypical and conventional? I've never really gotten an answer for that.

Allison-Barney was on Benazepril 5mg qd for both the UTK panel (01 May) and the chem panel on 23 March. For the 23 March panel, I only have a report from the university that lists what was abnormal, not the full results. He is now on benazapril and amlodipine for his BP. Here's what the report says:

Hypoalbuminemia 2.8mg.dl (2.9-3.7)
Elevated ALKP 118U/L (16-111)
Hypercholesterolemia 434 mg/dl (149-344)
Hypernatremia 153meq/L (144-152)
Hyperkalemia 5.1meq/L (3.7-4.8)
Urine Protein Creatinie Ration 4.5 (no ref range given)

All other results for CBC, Chemisty, Thromboelastography, and Urinalysis with cultures were within normal limits

Kelley
07-28-2009, 07:44 PM
I forgot to add...Barney is also taking Fish Oil caps twice a day.

Squirt's Mom
07-28-2009, 08:02 PM
Hi Kelley,

I'm not Scott, but I will try to answer your question -

Atypical Cushing's involves only the hormones Estradiol, Androstenedione, 17-Hydroxyprogesterone, Progesterone and Aldosterone. A pup with Atypical will not have elevated cortisol.

Conventional, or what is also called true Cushing's, does involve elevated cortisol and may also involve any of the other hormones - Estradiol, Androstenedione, 17-Hydroxyprogesterone, Progesterone and Aldosterone but not always.

If a pup has only elevated estradiol, it is called Hyperestrinism.

Atypical may or may not involve a tumor on the pituitary and/or adrenals.

Convention always involves a tumor. PDH = pituitary tumor; ADH = adrenal tumor(s).

Atypical is treated with melatonin and lignans (from flax), tho Lyso may be used as a maintenance dose only. Trilo is not an option for most Atypical pups or those who have conventional with elevated intermediate/sex hormones (those other five listed here).

Conventional is usually treated with either Lysodren or Trilostane, tho Ketachonazole is also used. When Lyso is used, a pup goes through a loading phase first, then on to a maintenance dose. There is no loading phase with Trilo or Keto.

I used to think that a pup could have both true Cushing's as in PDH plus Atypical, but that is not correct. If a pup has elevated cortisol, it is true Cushing's even if any or all of the other hormones are also involved. It is more complicated than this, but that is the gist of it.

Hope this helps!
Hugs,
Leslie and the girls

PS. My brain just stopped for some reason after the initial post of the hormones involved. :rolleyes::o Then all of a sudden I realized I left some things out....geez :o Old age is soooo much fun! :p

Kelley
07-28-2009, 09:35 PM
Thank you Leslie!
I've been thinking Barney was Atypical since that is what the UTK panel recommendations page said.

Squirt's Mom
07-28-2009, 09:38 PM
:o:o please read the "expanded" version of that post :o:o I think it will be a bit more informative. :)

Kelley
07-28-2009, 09:41 PM
Wonder why we never had a loading dose of Lysodren?
Maybe because the loading dose wasn't on the suggested treatments from the UTK panel?

Squirt's Mom
07-28-2009, 09:57 PM
Hi Kelley,

In looking back over your thread, it appears the treatment "considerations' did include treatment with Lyso in the traditional manner, #6 I believe. I am not sure why that option wasn't taken, tho. :confused:

I am sure someone here is thinking clearer than I obviously am tonite so hopefully you will get a much better response in a short time.

Hugs,
Leslie and the girls

AlisonandMia
07-28-2009, 10:01 PM
I think that may be the case. There is no harm that I can see in trying the melatonin, lignans and a maintenance dose of Lysodren first off and seeing how it goes and then moving onto a Lysodren loading if the results from that are not satisfactory after 4 - 6 months. If things actually got worse in that time you'd probably move to a Lysodren loading sooner than that.

Debbie's Harley also had significantly elevated aldosterone initially and after he loaded with Lysodren his aldosterone level returned to normal and her IMS at the time commented that that was what she expected to see. So it's possible that actually loading with Lysodren may help with Barney's aldosterone and that, in turn, may just help with his BP as well.

Good luck and keep us posted.

Alison

Kelley
07-29-2009, 08:29 AM
Thanks everyone. I'll keep you updated!

Kelley
09-09-2009, 09:17 AM
HI Everyone,

It's been a while since I've posted. Barney has been doing fine on his maintenance dose of Lysodren, flax and melatonin for about 10 weeks now.
We had some labs done last week and here are the results:
All labs on his VetScreen were normal except for the following:
-Albumin was 2.6 (ref range 2.7-4.4) It was 2.8 when last checked in March
-Alkaline Phosphatase was 178 (ref range 5-131) last was 118 in March
-Cholesterol was 490 (ref range 92-324) last was 434 in March
Are these lab results typical of Cush dogs? Anything I can do to get that cholesterol down? Its so high!

Now for the big test...the University of Tenn....

-Cortisol baseline 78.6 and post 199.6. Both are still above the ref range but down from 166.0 and post 229.7 in May
-Androstenedione >10 and >10. Previous results were 4.0 and 9.9
-Estradiol 125.9 and 116.0. Previous results were 114.4 and 110.4
-Progesterone 1.28 and 3.16. Previous results were 1.61 and 3.74
-17 OH Progesterone 0.9 and 2.58. Previous results were 1.03 and 3.5
-Aldosterone 175.5 and 512.2. Previous results were 653.6 and 727.1.

The results now say increased adrenal activity (significant) instead of severe.

Looks like we are seeing slow improvement. What are your thoughts on these results?

Thanks!!
Kelley

jrepac
09-09-2009, 10:06 AM
those are pretty good numbers
it is my understanding that the melatonin and flax take several months to really have an effect....I'm waiting until my bottle of melatonin is finished (4 months worth) before any further testing
re: cholesterol, it is typically high w/cush pups...I'm struggling with getting the levels down as well in my Aussie...it is indicative of the liver working harder, along with the raised ALK #s...which I am dealing w/too

I think the best thing you can do there for the cholesterol is keep your pup on a low fat diet...veggies are good filler uppers when they are hungry and have no fat! I have actually stopped feeding the premium dry foods and gone back to a low fat soy based formula, partly for this reason. That combined w/low fat canned formulations, of which there are many to choose from.

But, numbers headed in the right direction is always good news...

Jeff

Harley PoMMom
09-09-2009, 11:56 AM
Hi Kelley,

I agree with Jeff, they are pretty good numbers, especially since some of them are coming down...YAAA!!!

Albumin was 2.6 (ref range 2.7-4.4) It was 2.8 when last checked in March, might be dropping bc of his Aldosterone 175.5 and 512.2, which is still alittle high.

Alkaline Phosphatase was 178 (ref range 5-131) last was 118 in March...Oh, Honey, Harley's is 1289!!! the one I worry about is his ALT, I presume Barney's is normal?

Estradiol 125.9 and 116.0. Previous results were 114.4 and 110.4
I wonder why this dratted estradiol came up? If these were Harley's #'s, I think I'd write Dr. Oliver an email and ask him if you should up the dosage of either the flax hulls &/or melatonin...JMO.

All in all, great job Kelley.

Love and hugs.
Lori

gpgscott
09-09-2009, 12:12 PM
Hi Kelley,

I am glad to see the decline in the numbers, and as long as his symptoms are not severe I think moving slow is not a bad strategy.

You didn't talk about symtoms like water consumption, appetiete etc... how is all that going.

What is your Dr.s intent, are you going to continue the current treatment or try to step it up?

Best wishes. Scott

Kelley
09-09-2009, 12:29 PM
Thanks for the replies everyone!!


Jeff-any specific food recommendations? We've got him on Blue Buffalo for seniors now and it's totally not low fat at all!! He dosen't get any "treats" except for carrots (which he LOVES!!)

Lori-Barney's ALT is 32! Perfectly normal!!! Wonder what's up with that estraiol though?! Does it usually take longer to come down than the others?

Scott-The tricky thing with Barney is that he hasn't really ever had many symptoms. We started all the testing due to urine that looked like water. As far as that goes, it is still very light but now has a yellow tinge to it. His appetite is normal and is water intake is about the same as it's always been. The doc recommended that we stay the course as it is now. I think I'll go with Lori's suggestion of asking about stepping up the flax or melatonin due to the rise in estradiol.

jrepac
09-09-2009, 01:59 PM
Don't laugh, but I have gone over to a store-brand low-fat kibble mix (Wegmans). It is lower in protein and fat and she likes it a lot. I'm not wild about the additives, and soy is the main protein source, but it fits the bill. My vet had suggested lower protein and lower fat for both benefit to kidneys and liver; that combo is not EZ to find.

If you would prefer a name brand, with higher quality ingredients, check out Nutro Natural Choice Lite, Nutro Max Weight Control or Bil-Jac Reduced Fat. Mandy really liked Bil-Jac...we went thru a few bags of that. I then bought a small bag of the store brand as a lark...next thing I knew, that was all she wanted. Since she eats the dry as a supplement to her main meal of wet food (of higher quality), I try not to worry about it. At her age (12+), let her have what she likes (within reason...too much pizza is not good!).

And, yes, baby carrots are the A#1 snack! Mandy gobbles those up...raw string-beans too...and oddly, cooked beets, but I tend to not feed the beets often due to high sugar content.

Harley PoMMom
09-09-2009, 03:32 PM
Hi Kelley,

Blue Buffalo makes a weight-control formula for dogs, I have my boy on it right now until his diet is formulated for him. It is low-fat, moderate protein...here is the link:

http://www.bluebuff.com/products/dogs/lp-lite-chick.shtml

That dratted estadiol is a bugger to get down, with Harley it did come down a wee bit...from 132.2 to 116.4 in alittle over 2 1/2 months on the flax hulls & melatonin. But I have been giving Harley a tad bit more of the hulls than what he is supposed to get bc his estradiol number is extremely high.

Love and hugs.
Lori

jrepac
09-09-2009, 04:19 PM
Blue looks like a good one...thanks Lori...

the protein & fat are in a good target range (20% or less and under 10%, respectively)...it is tough to find that combo...I went nuts looking around for something suitable

does Harley tolerate it well? (no tummy problems?)

last time I tried a food w/people quality ingredients it did not go over well.....actually, I think it was Wellness Sr. Formula....no one was "well" on it...horrible poop-messes [which I later found out were quite common for this particular formulation]

re: flax, I have also upped the daily dose from 1/2 tsp once a day to 2 times a day....am hoping it will help lower all the hormones more quickly...they were all ramped up based on the UTK results

gpgscott
09-09-2009, 04:38 PM
Hi Kelley,

I just wanted to comment on this.



re: flax, I have also upped the daily dose from 1/2 tsp once a day to 2 times a day....am hoping it will help lower all the hormones more quickly...they were all ramped up based on the UTK results

Many of us with Atypical pups started with flaxseed oil, and then moved to purified lignans, and now many are using the milled flax recommeded by Dr. Oliver @ UTK.

I have stayed with the purified lignans as they are a standardized product and you know if the pup swallows the cap they got the whole dose.

Estradiol can be difficult to affect as it is produced by tissue other than adrenal tissue. I really think you need an increased dosage of Lysodren based on the numbers but on the other hand you are reporting nil symptoms.

So yours is a difficult issue because there can be damage occuring that you want to head off. I think a serious sitdown with the Dr. is in order to discuss the effect of longterm elevated cortisol (and intermediates), in the absence of symtoms.

Scott

Harley PoMMom
09-09-2009, 04:44 PM
Harley does tolerate it well, but he also gets other stuff to eat, he gets boiled rice, boiled chicken, pureed vegs and yogurt along with the blue buffalo.

Re: the flax hulls, I do the same thing, split the dose up to twice a day and give a tad more, I'm only doing this bc of his high estradiol number.

Love and hugs.
Lori

jrepac
09-09-2009, 11:37 PM
I actually mix the flax seeds in a bit of vanilla yogurt...she loves it! 2 funny!