Atypical Cushings-need advice!

[tivelnarf]

Hi there. A few years ago, my Corgi was diagnosed with regular Cushings, and this forum saved my life! Who would have thought that now, I would have a different dog, finally just diagnosed with atypical Cushings. My vet told me to start with the Melatonin/Ligans, but also told me I could try Lysodren or Trilostane also. His concern is that since my dog can't be stimmed, that it is impossible to accurately monitor the Lysodren. He has no experience with Trilostane. My biggest concern- the dog is SO FAT and I don't feed him any more than I do my other dogs, who are fine. I am worried that his obesity will cause him to have so many other problems. Second, his appetite is so ravenous, it is upsetting to see. My primary concerns right now are getting his appetite in check and getting his weight down. I can't imagine that the melatonin/ligans will be able to do this alone. What should I do? HELP PLEASE!!:confused:

[labblab]

Welcome back! (Although I am sorry that you have need of us once again...:o)

I am curious as to why your dog cannot be stimmed, and also how the "Atypical" diagnosis was arrived at. Atypical Cushing's refers to the condition where a dog's cortisol level is normal, but there are elevations in other other adrenal hormones that produce abnormal symptoms. The trick is, Atypical Cushing's can only be diagnosed by conducting a stim test which involves "pre" and "post" measurement of all the adrenal hormones, including cortisol. Currently, the only laboratory in the U.S. that can process this test is located at the University of Tennessee at Knoxville. When UTK processes this test, they also include treatment recommendations based upon the results. And for dogs diagnosed with Atypical Cushing's, trilostane is generally NOT recommended because the drug itself inevitably results in the elevation of certain adrenal hormones other than cortisol.

So it will be really helpful if you can tell us more about your dog's symptoms, history, and any testing results. Also, did you use a different username when you were with us last? It would be great if we can locate any previous postings and "link" them up with your new thread here :). How did things turn out for your original Cushpup?

Marianne

[tivelnarf]

Hi! Thanks for getting back to me so quickly. I did have a user name and ID, but when I put it in, it said that there were no records. I recall that the colors on here were more of a mustard-yellow and not green as they are now. It was also at least 5 or 6 years ago. Anyway...
ACTH stim showed normal cortisol levels. Dexamethasone suppression- also normal levels. Had an abdominal/adrenal ultrasound. Radiologist said "definitely not cushings, atypical or otherwise, because you would see some sign of it in the adrenals and I see nothing". (this is a guy I usually trust). Saw a specialist (internal medicine) who charged me a fortune and repeated all blood and urine work, said "wow, all clinical signs point to cushings, urinalysis points to cushings, but cortisol levels are within normal limits". he wanted me to repeat the ultrasound but instead I had my vet do a panel and send it to Univ. of Tenn. He called me last week to tell me it was definitely atypical cushings. I have to get the specific results, but I know it seemed like everything except the cortisol was high- I know the estradiol was high, and the progesterone also. I will write with the exact results tomorrow, hopefully. Meanwhile, I have to start him on some kind of treatment.....

[tivelnarf]

Not that he CAN'T be stimmed, just that since his cortisol levels are normal, vet said that we won't be able to know how low he can go before it's too low, etc. In other words, no real baseline to measure progress. I asked him why we can't just use the "normal" as a baseline, but he said since it measures only cortisol, he wouldn't be able to judge what was an effective dose other than clinically, and he was worried he could go too low.

[tivelnarf]

Sorry about all these posts but I keep forgetting to include things... My other dog did GREAT on the Lysodren. After loading, she stayed on maintenance for a couple of years, and then the vet had me take her off to see what would happen, and she held up fine! I guess no measurable regrowth of the adrenals, or whatever. Who knows? I was deathly afraid of the Lysodren back then, and my vet made me even more afraid. But the forum was so reassuring and helpful, it took all my fears away. Vivien (my Cushinoid Corgi) was a real success story on the Lysodren. She passed away about 5 years ago, so I guess that means I was on this forum even more than 6 years ago, possibly 8 years ago? She passed away from causes totally unrelated to Cushings, in that she died in a freak accident, likely caused by her senility (she was 13 and pretty out of it). Thanks so much for asking!

[labblab]

Thanks so much for this additional info. It wil be great if you can post the UTK test results tomorrow, along with any treatment recommendations that they may have included.

In addition to treatment with melatonin/lignans, an option sometimes recommended for Atypical dogs is to start a "maintenance" dose of Lysodren. For dogs with elevated cortisol, Lysodren treatment begins with a "loading" phase which involves a higher daily dose of the medication. For dogs with normal cortisol levels, a lower dose of Lysodren is given on a weekly basis and this treatment protocol can alleviate symptoms, since Lysodren also lowers almost all other adrenal hormones in addition to cortisol. And on the lower maintenance dosing regimen, the cortisol itself is not allowed to drop too low. The cortisol level can always be checked via periodic stim tests, as can the levels of the other hormones. So I am not certain as to why your vet is feeling concerned about the ability to monitor your dog's cortisol level. But once again, we will know a lot more after you are able to post the UTK results and recommendations tomorrow.

And it sounds as though you were a member of our caninecushings.net forum, which sadly closed down for active posting a while back. But we are really glad to have you back with us, here at our "new" home! What treatment route did you pursue with your original Cushpup?

Marianne

P.S. I see that while I was slowly typing away, you've already answered several of my questions! Truly, it is possible to successfully treat Atypical Cushing's with maintenance Lysodren dosing. But once again, we can talk about that some more tomorrow.

[tivelnarf]

Thank you so much, you are the best! I am sitting here reading about SDG vs. HMR lignans, who would have thought? I feel like my brain is going to explode!:) Knots of pine trees? And I thought I'd heard everything!!!:D I will run over to the vet tomorrow and get the UTK panel results. He didn't tell me that it came with recommendations; but I will see and get them. My cushy boy was an SPCA rescue, I got him about a year ago. He had been in the SPCA once before that same year, was adopted,but returned there after 6 mos. because of urinating in the home.... that didn't concern me at the time because I figured I could train him properly, but now I guess this is what was really going on. Well, at least I got him, as opposed to another wrong person. It's so sad, whenever he has an accident in the house, he gets so scared and cowers, despite my reassurances. I guess the prior owners must have really been horrible to him when he peed in the house, poor little thing. Now I just take him out twice as frequently as I do my other dogs, and that seems to be doing the trick. Talk again tomorrow. Thanks you are truly a godsend!

[Leena]

Hello!
I am curious, what symptoms does your dog have with the atypical??? I have a dog who might also have that, but have not done the testing yet due to money...Wierd thing is, her stim was positive but the urine test was neg!!! I know how confusing this all is! I am curious to see what your dogs results were as well...I hope that the folks here can help you with this!!!!

[labblab]

Here's a link to UTK's most recent list of all potential treatment options associated with abnormal adrenal hormone elevations. They will usually include a similar list along with your dog's individual testing results and highlight the specific recommendations that seem most appropriate based upon your dog's profile. So this is what you'll be looking for tomorrow:

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/TreatmentInfoAtypicalCushings201107.pdf

Marianne

[addy]

I am sitting here reading about SDG vs. HMR lignans, who would have thought?

Hi,

The HMR lignans are not as likely to cause loose stools while the SDG lignans may so if your pup has any intestinal problems, mine has colitis/IBD, it may be better to use the HMR if you can find a capsule or powder close enough to the correct doseage needed. Unniversity of Tennessee did all the homework for you on the link provided by Marianne. I started my pup with the Vitacost SDG lignans then switched to the Heartland powder as the filler in the capsules seem to bother her stools.

You'll figure it out. It starts out sounding like Greek but slowly makes sense:D

Hugs,
Addy

[tivelnarf]

Thanks to everyone for being so supportive! First, just want to post the UTK results:
Cortisol ng/ml- Result (baseline) 17.7
Normal Range- 2.0-56.5
Result (post ACTH)- 145.7
Normal Range- 70.6 - 151.2

Androstenedione ng/ml- Result (baseline) 0.64
Normal Range- 0.05 - 0.36
Result (post ACTH)- greater than 10.0
Normal Range- 0.24-2.90

Estradiol pg/ml- Result (baseline) 141.1
Normal Range- 23.1 - 65.1
Result (post ACTH)- 122
Normal Range- 23.3 - 69.4

Progesterone ng/ml- Result (baseline) 0.64
Normal range- 0.03-0.17
Result (post ACTH)- 2.93
Normal range- 0.22 - 1.45

17 OH Progesterone ng/ml- Result (baseline) 0.07
Normal range- 0.08-0.22
Result (post ACTH) 5.02
Normal range- 0.25-2.63

Aldosterone pg/ml- Result (baseline)- 67.5
Normal range- 11 - 13j9.9
Result (post ACTH)- 169.5
Normal range- 72.9 - 398.5 (thank goodness something was normal, for whatever its worth!!!)

As far as treatment recommendations, my vet said that they simply sent along that sheet that is on line. My vet recommended that I start with the Melatonin and Lignans, and then move to a maintenance dose of Lysodren if needed. However, I really don't want to wait 6 mos. for the over the counter stuff to work, if I can just start him on the Lysodren and get much quicker results, or non-results. Perhaps because I have had experience with Lysodren in the past, I am not as scared of it. But again, my vet says that it will be extremely difficult to monitor when he has enough Lysodren without having too much, since his cortisol levels are normal, and he said that generally you would stop the Lysodren when the levels reached normal. I suppose we could just monitor it until they get to the lower end of normal, seems logical, but I don't know why my vet seems to be so concerned. Any and all advice would be so very much appreciated! Thank you to all.

[tivelnarf]

@ Leena, if your stim results were positive, then I would think it would be regular Cushings, not atypical Cushings. What makes you/your vet think it is atypical?

[tivelnarf]

@ addy, thanks, and yes I did see that difference, so I am inclined, if I go with lignans, to go with the HMR. I was looking to see if there were any studies, anecdotal reports, etc., of the HMR lignans being any more or less effective, but can't seem to find anything on that. My vet tells me that you can't overdose on lignans, so if the amount you get is a little more than is recommended, it is no worry (I guess the excess must be passed in the urine, like vitamin C?) Please let me know if you have heard anything to the contrary. Thank you so much again! Your input is greatly appreciated.

[Squirt's Mom]

Hi,

Yes, it definitely looks like he is Atypical. But your vet is concerned about something that is unlikely to happen concerning a maintenance dose of Lyso and the cortisol going too low. With a maintenance dose and no loading, the adrenals are not eroded so they continue to hear and respond to the signal from the pituitary to release cortisol as usual. When a loading phase is required, as with elevated cortisol, the outer layer of the adrenal cortex is eroded a minuscule amount so the glands cannot respond constantly. This erosion is highly unlikely without the loading phase. The maintenance dose as it's used with Atypical just sorta stuns the glands.

Lysodren will lower all of the intermediates with the possible exception of the estradiol. Sometimes this hormone is produced in areas outside the adrenal glands like fatty tissue or hair follicles to name a couple. Lysodren works only on the adrenal glands so it cannot reach estradiol that is produced outside those glands. This is where the lignans and melatonin are especially important - they will reach estradiol no matter it's source.

As for whether to start with the Lysodren or not, these are my thoughts - the lignans and melatonin can lower the other intermediates as well and are a much more benign treatment so they are typically tried first for the dogs' sake. If they don't have to take something as powerful as Lysodren, why make them? ;) Squirt did well for about 2 1/2 years before she needed the Lyso added. If I felt my dog had gone undiagnosed for quite some time and was suffering the effects, then yes, I would go for the Lsyo right off the bat but that wasn't the case with us and I'm glad for those years when she didn't need the Lyso. Plus, he'll need the lignans and melatonin regardless because if his estradiol is not being produced in the adrenals, the Lyso won't help it anyway. ;)

Hope this helps!
Hugs,
Leslie and the gang

[tivelnarf]

Thanks so much for your advice and explanations, what you say makes a lot of sense. I have been a bit freaked out today because I just learned about SARDS, and now I am worried about blindness, since there seems to be a connection? Is this something to be worried about? This whole "adrenal exhaustion" stuff would not seem to apply if cortisol is normal and not low? I can't make sense of that piece of what they say. Anyway, I am going to order the melatonin and lignans online tomorrow. Question- I read that giving melatonin during the day can cause headaches and confuse the dog's normal cycle ( lol, they sleep all the time!). Any side effects anyone has reported from the melatonin?

[addy]

Zoe's intermediates came down, especially her estradiol, with 3 months of melatonin and lignans. Our difference is her cortisol was also quite elevated, your pup's is not.

You cannot overdose on lignans, however, the SDG lignans could give tummy problems if your pup is sensitive, giving more than needed,its fiber. I always had to be careful because Zoe has a sensitive digestive system.

Also, please remember that these hormones are cyclical. So you can test one day and have higher results, test another day and have lower results.

I weaned Zoe on to the melatonin. She was to have 3 mgs BID, I started with one mg, then 2 mgs, then 3mgs. The only thing I noticed was that it made her tired. It actually helped her sleep longer but each pup responds in his/her own way.

I know how worried you are about SARDS. I was exactly the same way. It does get easier.

Hugs,
addy

[tivelnarf]

Thanks for your caring and advice! Ordered the melatonin and lignans today online. Worried but keeping my fingers crossed. Anyone know a good link or have good info about a diet for this?

[tivelnarf]

Ok, so now I've read about the adrenal exhaustion theories, which essentially say that the normal cortisol readings in these cases are flawed, and that cortisol levels are really too low, thus they recommend prednisone and say that melatonin/lysodren could kill the dog. What's up with this? Is this a wacko theory or does it ever have merit? Have you heard of someone treating that way with success, it seems like this one nurse is the only one who writes abut it?

[Leena]

Hi!
In answer to your question, Precia's stim was indeed positive. However, when I took her to the IT, he said that could have been a false positive due to stress,and that a urine cortisol creatinine test would be better to rule out the disease. So, we did that and it was negative for Cushings! He said that the UCCR test is very good for ruling out Cushings. However, had it been positive, we would then have done a low dose dex test to confirm Cushings. So...this is why we are now leaning toward possible atypical.

[tivelnarf]

@leena- low dose suppression test would be the next step before doing a panel for atypical. Lddst is a more accurate test for classic cushings than the ACTH stim and also more accurate for diagnostic purposes than just a urine test. I would do that first before looking for atypical. ( which you can only really do with a panel from utk.) Lddst is a more involved test and a bit more expensive which is why vets tend to do the stim first.

[Squirt's Mom]

Hi,

I wanted to clarify something here. The test Leena is talking about isn't the usual urine test. It is the UC:CR - the urine cortisol creatinine ratio. This test can rule OUT Cushing's, but it cannot diagnose. If the results come back normal, Cushing's conventional Cushing's can be forgotten about; if it comes back abnormal, this is still not diagnostic of Cushing's; it simply means something is off and more testing is required to find what.

Using urine to monitor cortisol levels once treatment has begun is something some vets do as well using a three day collection method. So certain urine tests do have validity in Cushing's testing both diagnostically and for monitoring.

Hugs,
Leslie and the gang

[tivelnarf]

I see! I stand corrected. Sorry!

[lulusmom]

Hi and a belated welcome back to the forum.

I've been following your thread and feel everyone has done a good job of providing feedback, feedback that I agree with. The only reason I am posting is because you are fretting so much about the possibility of SARDS. SARDS is not a side effect of cushing's and it is not a causative factor. What the books say is that there seems to be a connection to cushing's but they don't know what it is. The veterinary community does know that dogs with SARDS usually have elevated intermediates but why that is, nobody really knows. The odds that your dog will ever experience SARDS is extremely low. We have hundreds of members and a only a tiny fraction have come here with SARDS dogs. In our experience, an uncontolled cushdog is more likely to have diabetes and go blind from diabetic cataracts than they would SARDS.

As for Caroline Levin and Dr. Plechner, an excerpts from Wikipedia pretty much sums up their reputation in the veterinary community as well as a good number of us members:


Adrenal exhaustion" is a syndrome put forth by Ms. C. Levin, a lay person, who subscribes to the theories of Dr. Plechner. However, "adrenal exhaustion" (not to be confused with Addison's disease) is not recognized as a legitimate medical disorder in veterinary medicine and the condition has not been described in dogs (or cats). Moreover, this experimental hormone replacement therapy has not been approved or evaluated for efficacy and safety by the veterinary community, nor has it undergone scientific peer review in the mainstream veterinary literature.

I've read Dr. Plechner's papers and he's had more than 10 years to gain credibility via sanctioned and peer reviewed studies and a lot of us are still waiting. As for Ms. Levin, she's a layperson with no formal education in internal medicine. While I appreciate some of the studies she's done and some her of conclusions do track with what we've seen here on the forum, she's also had a good number of years to convince the influential endocrine experts of the world of her theory.

Dr. Oliver was the world's leading expert on adrenal hormones and if he subscribed to Dr. Plechner and Caroline Levin's theory, I never heard about....and I've read everything I could get my hands on written by Dr. Oliver. If you read the paper you just proved a link for, you'll see that the great majority of dogs in that study had elevated cortisol, not low cortisol. I also did a bit of research on our own SARDS dogs here and I could not find one with low cortisol. Most were normal but some were above the normal reference range.

http://www.k9cushings.com/forum/showpost.php?p=13903&postcount=5
http://www.k9cushings.com/forum/showpost.php?p=35489&postcount=20
http://www.k9cushings.com/forum/showpost.php?p=59458&postcount=1
http://www.k9cushings.com/forum/showpost.php?p=58222&postcount=11

I have two cushdogs, the first diagnosed in 2005 and I can honestly say that I worry about a lot of things but SARDS is not one of them. I know it is easier said than done but please try not to worry.

Glynda

[tivelnarf]

Thank you so much for your words. I can only hope and pray that I am worrying for nothing. MY cortisol levels must be through the roof! Its just that he has been having very slight eye issues the last month, with no infection. Just rubs them a bit, they look red and pupils seem dilated to me. So when this atypical diagnosis came and I started researching and saw the sard stuff, I panicked. All the sard owners talk about ravenous appetite preceding the problem, which is my mutts major issue. Perhaps I will see an ophthalmologist and let him/ her do the test just to allay my fears. If they see nothing wrong I will feel better. Any thoughts? Please please don't lose patience with me. My dog is a rescue from SPCA and I have barely had him a year. He us so needy and scared, and tentative as it is. When i even think of the concept of sard, i worry that even sudden onset blindness affecting him would be too much for
him to bear. Please write back :) p.s. I also agree about plechner there certainly has been enough time for his ideas to be proven one way or another. Its strange that no one has done a study either proving or disproving it.

[Harley PoMMom]

Oh sweety, we would never lose our patience with you, we definitely understand your concerns with your boy and are here to help in any way we can.

My boy, Harley, had extremely elevated estradiol and high cortisol. Lysodren irritated his already inflamed pancreas and after a month wash-out period the Vetoryl was started. It seems the Vetoryl unmasked kidney problems in Harley and the Vetoryl had to be stopped. Harley's estradiol and cortisol remained elevated for long time and he never had any vision problems...no SARDS.

Please feel free to ask any and all questions, ok? ;):)

Love and hugs,
Lori

[tivelnarf]

Thank you all for your patience and kindness. Happy holidays to you!

[lulusmom]

Ditto to what Lori said. I do hope my post didn't come off sounded curt. It's difficult enough to deal with the possibility of cushing's and I didn't want you to have the added worry of the possibility of SARDS. It's remote. If you think seeing a veterinary opthamologist will bring you comfort, then I think that's a great idea.

Pomeranians are famous for hormonal imbalances so like Lori's, Harley, my own Pom, Lulu, had some of the highest sex hormones I've ever seen and her eyes are bright, clear and no doubt has 20/20 vision, or at least she does when she sees food. :D

Glynda

[Squirt's Mom]

Lose patience? Oh, honey! You should have seen me when I first got here! A dear friend later told me she could just see my hair standing on end like a woman with her finger in a light socket. She was kind enough to leave out the parts about bulging eyes and flying slobber! :eek::p

Everything I read was a nightmare of language that the only thing I could consistently grasp was that my baby was dying - and that was completely wrong but that was all I could see regardless of what the words actually said. I cried for months and wrote volumes here about every thought and fear that entered my mind. The members kept repeating themselves for all those months until I could hear a little bit again...then they began to teach me. The more I learned, the less and less hold the fear could have and I was able to learn even more.

So, for tonite, turn off your computer, run a hot bubble bath, grab a good book and a glass of wine and just forget about Cushing's for a little while. Enjoy Christmas in whatever manner brings you the greatest joy and remember your family here is by your side the whole time, cheering you on.

You're a good mom and your boy is lucky you chose him as your very own.

Hugs,
Leslie and the gang

[gpgscott]

Welcome,

I don't know anything about HMR.

SDG is the active component of the lignan. It is important to know the percentage of SDG in the product you are administering.

When administering non standardized lignans you also are giving a large dose of fiber which can cause bowel issues.

Certain breeds are more prone to atypical Cushing's and I think I saw that this is a Pom, is that correct?

Please don't be impatient, the lignans route can take a few months but with normal cortisol you really do not want to subject the pup to a cortisol diminishing med.

Estradiol is one of the most difficult hormones to get in check and with an obese pup it is even harder.

Best. Scott

[tivelnarf]

Scott, HMR is another type of lignans, less irritable to the bowel. Although it does not contain SDG, it contains HMR, which does the same thing, that is, forms enterolactone. Some think it is a more efficient product, albeit more expensive and more rare. It is recommended as an alternative to SDG lignans by the vets at Tennessee, as well as most others who treat this disease.

My dog, Chachi, is a mixed breed SPCA rescue ; likely has some pug but is probably a several generation mutt! I started him on melatonin last week, he seems to be tolerating it well. Will start the lignans next week. May still see a veterinary ophthalmologist just to make sure that everything looks ok.

[tivelnarf]

Leslie thank you for your kind words of caring and support. Hope you all had a lovely holiday!

[tivelnarf]

Hi- it's been about a year since I've posted here- my dog has atypical CUSHINGS and I have been giving him lignans and melatonin for a year. New utk test results show lower initial levels but the same as before post ACTH. Vet says the lignans and melatonin not working. Had an ultrasound and radiologist said that it is Not atypical CUSHINGS (don't know why this keeps autocorrecting the word to capitals!) because no signs of adrenal hypertrophy. Quote from ultrasound report: "even in aytypical CUSHINGS the adrenal glands show signs of hypertrophy." My regular vet says this is not true? Any help with this would be greatly appreciated! Thanks so much!

[labblab]

Hello and welcome back! I've taken the liberty of merging your new reply with your original thread. And just as soon as I have a chance, I'm planning to go back and review all of your boy's history. But in answer to your specific question about adrenal abnormality, this is my understanding re: typical ultrasound results for dogs with conventional Cushing's. A dog with adrenal Cushing's will typically exhibit abnormalities on an ultrasound image (one adrenal gland swollen with the presence of a tumor or mass, and the other gland often shrunken or atrophied). The majority of dogs with pituitary Cushing's will exhibit enlargement of both of their adrenal glands. But not infrequently, the adrenal glands of dogs with pituitary Cushing's will be of normal size -- in fact, up to 30% of the time. Here's a quote from an article by Dr. Claudia Reusch: (http://www.k9cushings.com/forum/showthread.php?t=230)


In the typical case of a dog with PDH the adrenal glands have a bilateral symmetrical appearance. They may be enlarged (increase in thickness), or normal-sized. Normal-sized adrenal glands are relatively frequent (about 30% of cases with PDH) and we assume that they are mostly seen in dogs with short term or mild disease. In dogs with PDH the shape of the adrenals is usually preserved, a plump appearance is sometimes seen. With regard to echogenicity adrenal glands in dogs with PDH are most often hypoechoic and homogenous. However, the parenchyma may also appear irregular, show focal areas of increased echogenicity or a nodular appearance.
I'm afraid I can't speak to typical ultrasound results for dogs diagnosed with Atypical Cushing's but normal cortisol levels. But from the quote above, I have to "side" with your vet re: adrenal abnormality, generally.

Marianne

[tivelnarf]

Thank you for getting back to me so promptly and I apologize for the late response. I will get Chachi's latest UTK results and post them also. I am at the point of trying the maintenance dose of Lysodren, but before I do that, I was reviewing all of his tests and I noticed that ultrasound report. Since I know that Lysodren directly affects the adrenals, I just was wondering if you had any thoughts- I recall now that the radiologist insisted that it wasn't atypical (or any other) cushings due to the lack of enlargement of the glands- but since I was going with the melatonin/lignans for a while, I didn't really think about it. Now that I'm considering moving on to the Lysodren, I am a bit concerned. Thanks, Fran