Chicamonkey IAA/IGF-1 positive results

Hi all- I have a telemed call with the Vet tomorrow. She emailed me Monkeys positive results results this Tuesday....
I have made a list of questions for the vet, some I know the answers to...
Could you add anything you think I may have missed??
Thank you!!
@Wendy&Neko

Tell me about Acro IAA cats from your experience.


What is acromegaly


What is IAA- is it self limiting?


How do I know if she has a pituitary tumor?


What are the therapies / courses of treatment

Cyber Knife

SRT

IMRT

Targeted dose therapy (single session radiation)


Carbergoline- can it cure acromegaly?


Are we in the early stage of her diagnosis?


What is her survival rate at 188/80%


Is surgery an option for her age?

Or would radiation be a better way to manage?


What are side effects of radiation?


I’ve heard Levemir is less “bouncy” than lantus - with flatter curves- onset at 4 hours and nadirs later in the cycle which might be better for my schedule. Can we switch? Do I need to reduce the starting dose?


With regard to her kidneys-

Fancy feast is high in phosphorus- and tiki cats is not too far below ff-her levels were borderline 11/14/20- what food should I be giving her?


Do you know if UF Vet school here in GainesvilleFl has Desire or ability to treat acro/ IAA?


What is the appropriate blood glucose range for acro cats?


Are you familiar with insulin dosing strategies for her needs as she progresses?

 

Hi Suzi,

I just wanted to say hi, that I'm sorry for the diagnosis, and to let you know I think those are all excellent questions. I have been following Monkey's progress, as Fred is also not responding well to insulin. I fear I may be joining you here in the acromegaly group very soon...I should have Fred's results tomorrow.

Monkey is beautiful, and I wish you both the best of luck!

 

We will weather the storm together
Nice to meet you here! Fibers crossed for your furbaby

 

Sorry I didn't get back to you earlier. 500 meter races pieces this AM on my just went skiing legs. I'm alive again and working on the answers now - might take a while.

 

I apologize in advance for the novel. Cute pic of Chicamonkey - looks like she doesn't have any facial signs, not uncommon. Good luck with the phone call.

As I said yesterday, good luck on getting a vet who knows anything about this. Vets, until recently, were taught "this is acromegaly - it's so rare you'll never see it". The research showing just how common it is came out less than 10 years ago. IAA - good luck getting a vet knowing even what that is. Our experience with some internal medicine vets here don't get it.

Read this first, you might know more than the vet: Acromegaly - the basics

Again, you'll likely get a deer in headlights look. I have seen only two papers on it studying how common it is, both on tiny samples. One said it's common, the other said uncommon in diabetics. Our experience here is that it is self limiting over time, about a year.

The chances are good she does. A CT scan or MRI may see if for sure, or maybe not. There have been cases where it hasn't been seen. With an IGF-1 number like Monkey's, we assume it's there and treat it like it is. Only if you are getting surgery or radiation therapy do you really need the CT scan. For some research on this see Case 2 in this paper: (2020) Updates in Feline Diabetes Mellitus and Hypersomatrotropism

At a high level, treatments are radiation therapy (Cyber Knife, SRT, IMRT), surgical removal of the pituitary (hypophysectomy), and medical treatments. Sometimes SRT is given as a single dose treatment. CyberKnife is a more targeted/more expensive version of SRT. More details on treatments on post 7 here, along with a link so some places that did treatment in the US. Prices in that post are likely out of date now. Adding to that list is two places in the US that I know of that do the surgery, AMC in New York and a place in LA. Cabergoline does not cure acromegaly, surgery is the only option that really does that. But cats can go OTJ with radiation therapy and cabergoline, and there is some evidence the outrageously pricey pasireotide does that too. Even if they don't go OTJ, symptoms are greatly reduced and doses typically reduced too. And more importantly, better QOL.

I've read somewhere that being diabetic is a later stage symptom of acromegaly. Not sure how much is really known about that - there have been a couple cats with acromegaly that were not diabetic. Neko had an acro symptom 6 months before diabetes, I later discovered. Honestly, it takes being diabetic before most acros are diagnosed.

No idea. The IAA has no impact on her survival, it just makes dosing more challenging. The IGF-1 number bears no relation to tumour size. This latter from the IM vets at CSU.

Surgery is absolutely an option, provided she has no heart issues. Here is Sophie's story if you are interested in reading it, along with posts from a couple other people who had the surgery done, Titan at RVC in England and Schmee also at AMC. Apparently the quote was around $15K. Yikes. At the time, there was a donation helping people with costs and I don't know anyone who has had it done since the donation money ran out. You absolutely want the surgery done by a surgeon with experience doing it. Heard some bad out comes from a couple people who went to some place new. Another post you may find of interest:
Post pituitary surgery discussion of medication and other issues Radiation also requires anaethesia, but less technically challenging. Side effects of radiation are few if SRT/Cyperknife, more with IMRT. SRT can be some initial swelling in the brain - not common and just needs a couple days of pred. Longer term some small number go hypothyroid - easily treatable with meds. Some small number have the tumour come back, Neko one of the few I've heard of, but one of the kitties that went to AMC also had to go back on the juice after a while.

Basically, the decision to treat or not and if to treat which one often comes down to money. All treatments but cabergoline are quite expensive. At the time we had SRT done, it was half it's current cost. On the up side, at that time, radiation therapy was the only treatment available and the rest have happened since then. CareCredit has been used by more than one to fund SRT.

In many cats, Levemir seems to have a bit better duration, hence flatter cycles. They still bounce as I can attest. The big things, should Monkey become a higher dose cat, is that the acid base of Lantus can sting at a point. Should that happen, that's another reason to switch. Plus an insulin switch can sometimes trick the antibodies. And yes, you lower the Levemir dose to 70% of the Lantus dose to start, as some cats show a marked reaction to the switch. Even more so if IAA in the picture.

Avoiding high phosphorus foods is a good idea. Acromegaly by itself is hard on kidneys. Weruva have a lot of low phos foods, and there are others - I did raw and homemade with premix that was low phosphorus. There are numerous options. Check out this list.

IAA is only treated by Father Time. It's irrelevant otherwise. The vet school in Gainesville would be a good place to start. Your vet may know who to contact. Also see if their website talk about radiation therapy. It might be under cancer treatments as it was at CSU, though the tumour is benign, the treatments are also used for cancer patients.

I will give you my opinion, don't know what your vet says about BG range in general. A lot of vets don't even want to see anything below 150 in non acros. With acro, you really want to try to keep her below renal threshold as much as possible. See note above about acro being hard on kidneys. Many people here with acros do very well with cats following TR. You just don't need to be as aggressive to seek reductions.

 

Weruva is a good choice.

Can you post the most recent Bloodwork

 

Hi Suzi. My cat, Darcy, was recently diagnosed with Acromegaly as well (IAA negative). We are just going to be starting on Cabergoline. It just arrived today. Darcy's number was really high (over 500), but as Wendy said, that number apparently does not correlate to tumor size. Also, it's my understanding that the growth hormone produced by the tumor also fluctuates. So I am just learning. I'll start posting on here, too, about what happens after we get started on the Cabergoline.

 

Wow! So much to read! Thank you so much !
I have more questions. Like now that I am at 2 units of levemir and I KNOW she’s acro and IAA ... do we fast track the increases to say 4 cycles vs 6 cycles?

 

Fire away, I hope the consult went well.

I don't give dosing suggestions without seeing a current spreadsheet. No one here will. Some cats less lower doses, some need more. Just because you have an acro/IAA diagnosis, it may or may not change the dosing strategy, but it could.

 

I’ll get my ss back up again soon !
The vet cancelled and rescheduled for Tuesday .... will keep you posted

 

Too bad on the vet reschedule. You might want to change the signature to reflect that you are using Levemir now. Which I think is a good move by the way.

 

I think levemir is amazing.... nice and flat !
Now I just need lower numbers! She’s at 2 units and in the 300’s

 

Since she got up over 3 units on Lantus without significant movement, she probably needs more insulin. The data will tell me what to suggest next.

 

Chicamonkey's Spreadsheet is now updatedChicamonkey's Spreadsheet

 

When I click on the link, nothing happens. Maybe check the hyperlink?

 

https://docs.google.com/spreadsheets/d/10iizQaUFvt9FnkWOPNWElYFT3_DzzE-4Nd0U3pcd_Fs/edit

 

Thanks, it works now.

If does look like you have some catchup to do. The increasing every 4 cycles works by 0.5 units works as long as you are only seeing 300's and above, and provided you can get a second test each cycle. So, weekends or days off is good. When you can't due to work, I'd go back to the every 6 cycle increases, provided you can get those night times tests. I didn't see any tests the night of the 5th, so the increase to 2.5 tonight was based on only 3 cycles of data. TR is aggressive, fast tracking even more so. I've have seen some cats make sudden changes, so we need to be safe about these increases.

Fast tracking also shouldn't be continuous. Periodically you need to pause and do six cycles to let the depot catch up.

How is Chickamonkey feeling/doing, outside of her numbers?

 

She is really doing well! Peeing, pooping, purring, even some play!!

 

That's an awesome Monkey report.

 

I’m so glad.... so glad I switched her to Levemir!!! So glad !
Do you know anyone who has used topical cbd for their fur babies?

 

I know of people who have used the oral drops, but not topical. Maybe post in the Feline Health forum and ask.

 

@Wendy&Neko

I had my vet telemed call last night.
This is what the vet told me:
Based on the fact that monkey was on such a low dose at the time of IgF and IAA test submission, the MSU endocrinologist stated the tests were not indicative that she is acro or IAA positive.
Regardless of the fact I had her up to 3.75 units on lantus and her numbers kept climbing when I decided to do a rebound check.
She recommended resubmitting tests when we /if hit 9 units without regulation.

She said her mentor at FSU said “ c’mon Kandy you know better than to send in testing with a cat on such a low dose!” She said I did it because my client requested it.

am I missing something? I thought test results were test results?!?

isn’t it better to catch it early? She treated me like I was an idiot.
she also said :
Stay on lantus ( I already switched her to Levemir and I can tell you, as evidenced by her ss- there are no bouncing issues, she is nice and flat- just still high 363 amps @2.5 u)
No pain meds needed- she is not acro
Feed only twice daily. NO snacks . Not even a piece of cooked chicken.
Increase insulin every six cycles by a half unit.

 

I am sorry your vet is so misinformed. My vet told me Neko had to get up to 10 units before I needed to test her for acromegaly, partly based on what the uninformed local IM vet she consulted with told her. Neko never got higher than 8.75 units. Her CT scan clearly showed the tumour. In the Royal Vet College study that showed how common acromegaly actually is, they saw cats range from 1-35 units, with an average of 7 units. They did CT scans as part of the study. Did I mention we've seen a couple cats at 4 units positive with tumours on CT scans? One, Valentino, recently had SRT. Also, we have seen cats around 3 units with IAA.

Any chance she could send you what the endocrinologist actually said on the report? Before 73 days since insulin therapy was initiated, there is a strong chance of false negatives. Not seen anything talking about false positives. We have had one cat, Howie, test negative before the 73 days and well positive after.

And yes, better to catch it early. Your problem will be with this vet going ahead. If she doesn't buy into diagnosis, you won't be able to get her to work with you on treatment. If it think it will help, I can send you the link to the paper from RVC.

Wow, the vet doesn't even know feline diabetes!

 

Good morning Wendy!!
I have requested the final report, the vets husband sent me an email stating there was no final report just a phone call between two colleagues giving the vet everything she needed to tell me. Not only am I an RN but I know others have actually received reports (dictated finals ) from MSU !
I’m going to contact MSU and ask them. This is ridiculous

edit:
I contacted MSU and they told me the final dictated report is at the vets office and I need to get it from her.
They (the vet)just told me they don’t have one

 

Something is rotten in the State of Denmark!

I'm not buying it. I wonder why they won't give you the report... just being lazy? Very frustrating. And you're the one paying for all of this, too!

 

You paid for that report, it's yours to get. All I got was a couple lines of text, maybe they missed it? Or they can ask MSU to resubmit it to them.

 

This is what I recieved. Idess sent the samples to MSU

 

So, I wrote to MSU! I asked for the dictated final report. They told me that my vet is their customer and I need to obtain that report from my vet.... AHA!!!

@Wendy&Neko

interestingly enough, I emailed MSU yesterday and requested the final dictated report, they told me that because the vet was their client I had to obtain it from her. AHA! SO THERE IS A FINAL DICTATED REPORT! So, I emailed the vet, explaining that all my friends that have gone through this or are currently going through this received a final report from MSU.
Within a half hour, I received it and the report DID NOT reflect what the vet told me which was, based on the fact that monkey does not look acro and she is not up to 9 units the results were inconclusive.....and changing insulin was not recommended.....
See the final report below

 

I got a piece of paper with the results on it. No real written dialog. Similar to Larry's, except it just is a paper from MSU Veterinary Diagnostic Laboratory. It just shows that his IGF-1 result was >521

 

You may want to get a new vet, or you may just have to be really insistent with this vet if you think the vet is willing to listen/read/learn more about Acro. Some of the people on this board convinced them to treat their cat and let their cat be a kind of "test case" for them. I think maybe this was the approach that @Olive & Paula took with her vet. I know getting a new vet is not always an option.

 

Every one I have spoken with got a final dictated report....

 

Nope... I am done with her. We don’t do well being talked down to, especially when this vet has only ever treated ONE acro who she euthanized..... no thanks next!!!!

 

Amen! Good for you! Acro is NOT a death sentence by any means.

 

"The elevation of IGF-1 provides support for diagnosis of hypersomatrotopism" I think that's the same quote I got.

My vet had never treated an acro before, at least that she knew of. After Neko was diagnosed and as a result of learning how common it was, she discovered another at her clinic. The owners unfortunately didn't even want to treat with insulin. Just saying it's not always up to the vet whether a cat is euthanized. I know my vet was thrilled I didn't want to do the same when I heard the original diabetes diagnosis. I'm afraid is far too common a owner reaction. Anyway, the vet withholding the truth from you is enough reason to go looking elsewhere. Like Suzanne said, find a vet willing to learn with you and work with you. That's why I ended up sticking with my vet.

 

Here is what I received for MurrFee. This was from a different practice than Snuffles uses.

 

Ollie's original vet didn't think Ollie was acro despite the IGF results. He was using UK measures. He didn't order IAA even though I requested it. He wouldn't order Levemir but I had her on it before the tests were done, He wanted to go back to lantus. He refused to try cabergoline.

Found new vet. She agreed to try cabergoline. I suggested she write a paper on our journey so it may help other vets to consider it more readily. It was how Ollie looked to her that made her decide to try treatment.

 

You OK Suzi? I noticed Chicamonkey’s dose has gone the wrong way. She needs more insulin not less. The fact that she feels better at lower doses is telling you how badly glucose toxicity has set it. She feels better in higher numbers. I like to equate it to people on too much caffeine (blood sugar). Buzzing at high numbers, grumpier at lower. She will get used to better blood sugar.numbers if you give her the chance. All this time in high numbers is really hard on her kidneys, as I am sure you know. Acromegaly is also hard on kidneys too so that’s another reason the get her below renal threshold as soon as safely possible.

I know there are supposed feline diabetes “help” groups on FB that are always telling people to reset or recheck. They are wrong and I have seen cats go DKA under their “care” as a result. If you want, I can even point you to the research that cats are not on too high a dose if you are following TR with a proper starting dose, safe increases and testing enough. A cat needs however much insulin they need, and it is even more so for acro and IAA. The longer you let Monkey linger in high numbers, you are letting antibodies win, which means even higher doses to break through. From cats I have seen here with IAA, you have to keep the pedal down on increases or you end up on even higher doses.

Questions? Anyway we can help? I want cute Chicamonkey to be better, and that means bringing down her blood sugar.

 

I can't open ss. Was it removed?

 

Link to SS is in post #17.

 

Hi Suzi! I'm thinking about you and Chicamonkey. I understand how hard it is. My boy Darcy is currently at 37 units and I'll probably have to increase him again soon. I hope Monkey will not have to go that high. We are about to switch to Levemir soon though, so I will have to reduce his dose at first while we see what happens. I don't know where we would be without Wendy's help. I was always being advised (not on FDMB!) to either reduce his dose, or hold his dose longer. I wish I had come over here to the FDMB last year instead of waiting until January to come over and post here out of frustration, fear and desperation!

I hope your week at work has been all right and that you're having a good day today!

 

Hi Suzi, when Howie was first diagnosed (he was on ProZinc), my vet had given me some very old-school dosing advice of fluctuating his dose depending on his BG. I have no idea if that is what eventually led to his IAA (and now acro), but it makes sense in my mind as he wasn’t budging. Regardless, I have to follow TR really close and move his doses up every 6 cycles. I was lucky that he was mostly in the 200s and 300s until I hit a magic day of finally hitting a blue and I was over the moon and now is in greens. But it was a lot of close monitoring and bumping up dosing to levels I couldn’t believe I had to get up to (55 units was his highest, he’s currently at 43 units). So trust the process and great helpers like Wendy who knows what she is doing!! I know this FD diagnosis is frustrating and scary and IAA and acro exacerbate it. Keep asking tons of questions. We’re all here to help you and share our experience as we can. We want to keep all of our fur family as healthy as we can! BIG HUGS!

 

My vet said that she had never had a client who opted to treat their cat with this diagnosis. I didn't ask if they euthanized or not. Fortunately, she knows I am a fighter. So here we are trying to treat.

 

Thank you Wendy, I’m not quite sure what’s going on but with the ss- I have increased her dose and we are at 4 units now. I will try to fix it again....
I don’t have anyone else helping me. I even fired the vet that told me she’s not acro or IAA...
monkey is doing well ... peeing, pooping, purring preening... a little more play....hungry .
Thanks for checking in!!

 

You know, a lot of people seem to have been having trouble with spreadsheets lately. I just looked at Monkey's sheet, but I couldn't open it unless I went up to post 17 above and click that link. I see that you are up to 4 units. You are doing everything correct, it looks like... increasing by 1/2 unit every 6 cycles. I'm so glad that she's got all the "Ps" down and is happy! Oh, when I opened her SS, it said that the sheet was "in the owner's trash" and would soon not be accessible. It's the sheet called Chicamonkey 2 (so I was wondering if you have two different spreadsheets.) Have a great day! Glad you fired that vet! I hope you can find a better one for your girl.

 

Sounds like Monkey is doing well, glad to hear that. I too felt pretty alone at Neko's diagnosis. My vet didn't know what to do (though was willing to learn) and most of the acro folks had left here, leaving just a few part timers.

 

Link to her SS in #17 says it has been deleted

 

im having computer problems..... and have not kept ss on computer fir a while. I can’t see it on my phone very well ( aging eyes)

however- monkey reached 7 units and is in greens and blues!
Now I’m trying to find the balance.....
Amps 95
I waited 30 minutes and she was 110
30 more minutes without food she was 128
So I gave 6 units of levemir.
She IS acro and IAA and her feel good zone is 100-170

 

Suzi. Hi! I was worried about you after I didn’t hear back from you. It sounds like you are doing a great job with Monkey. Greens and blues!! All good.