Mister has very high IGF-1, what are my options?

Discussion in 'Acromegaly / IAA / Cushings Cats' started by MisterBillie, Apr 18, 2022.

  1. Larry and Kitties

    Larry and Kitties Well-Known Member

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    With high doses using a pen w/pen needles is fine if you only change in 1-unit increments. However, I tried using pen/pen needles for my MurrFee. He was on >20 units Levemir. So I only changed in 1-unit increments. Because of the high dose Did not waste insulin by priming since if I was consistent with with not priming the dose dose would be consistent even if accuracy was a little off.

    However, I found it awkward to use the pen because the thumb was far away from injection point. I tried the pen needles since they were included when I purchased some insulin pens from Craig's List. I gave up w/using pen needles and just used a syringe.
     
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  2. MisterBillie

    MisterBillie Member

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    Last edited: May 21, 2022
  3. MisterBillie

    MisterBillie Member

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    It was mentioned that Cabergoline could cause GI issues. What should I be looking for?

    Recently my cats poop is dark, almost black, and he doesn't cover it
     
  4. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    GI issues meaning nausea, vomiting, diarrhea.
     
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  5. FrostD

    FrostD Well-Known Member

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    That color is a little concerning, because it could be digested blood. As is the bot covering that usually means not feeling well (which could just be the high BG but you never know). Perhaps bring a stool sample to the vet?
     
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  6. MisterBillie

    MisterBillie Member

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    Both vets I called said they don't test for blood, they just test for worms and such.

    His stools definitely seem affected by the Cabergoline now. They are looser and dark in color. Often times he isn't covering his stools now. And some of it remains on his butt after he is done at the litter box.

    Also, the Cabergoline so far has done nothing regarding battling his insulin resistance. Two days from now, it will be a month since I started EOD cabergoline.
     
  7. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Have you considered going to every day cabergoline?
     
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  8. MisterBillie

    MisterBillie Member

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    Yes, but would that make his stool problems worse I wonder?

    The good part is that he enjoys the taste of Cabergoline, so I don't have to syringe feed it to him or anything.
     
  9. Larry and Kitties

    Larry and Kitties Well-Known Member

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    The vt has to send fecal sample to a lab. The two major labs ae Idexx and Antech.
    The Idexx test is 907
    Screen Shot 2022-06-05 at 3.36.56 AM.png
    For Antch it is T810
    Screen Shot 2022-06-05 at 3.38.43 AM.png
    If the vet uses another lab then they have to look up the test for that lab.
     
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  10. MisterBillie

    MisterBillie Member

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    Switching to daily Cabergoline (instead of Every other Day) starting tonight. Should I be reducing his dose as his weight goes down?

    Mister's situation is literally identical to the first day I brought him in on 01/06/22 when he was diagnosed with diabetes. I made a new thread regarding blood in urine today: https://www.felinediabetes.com/FDMB/threads/mister-has-blood-in-urine-again.264436/

    I might have to go the ER tonight or hopefully the vet tomorrow morning.
     
    Last edited: Jun 10, 2022
  11. FrostD

    FrostD Well-Known Member

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    Blood again and not urinating? I would take him in if he's not urinating much/struggling...my fear is always if they're blocked.

    At minimum I would check ketones if youre able.

    As for dose, I tended to adjust whenever he lost about 1lb/0.5kg - because then I knew the loss was real, and not perhaps a coincidental "he didn't eat yet + just peed and pooped" difference from the last weight.
     
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  12. FrostD

    FrostD Well-Known Member

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    Just checking in since I know he had the SRT...
     
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  13. MisterBillie

    MisterBillie Member

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    He's at 25 units of Insulin Glargine (generic Semglee). EOD Cabergoline. I will update my spreadsheet tomorrow. I might have to go back to 26-27u, that seems to be the sweet spot.

    The vet that performed the SRT says their routine is to do a CT scan 90 days after the SRT. But is there any reason to do the CT scan if his numbers aren't coming down yet? Should I just postpone it longer?
     
  14. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    You do not need to redo the CT scan this early. It can take quite a bit longer for you to notice SRT working. Seeing better numbers now is a good sign. Do you notice any behaviour or acro symptom improvements? Those might come earlier.

    Redoing the CT scan will tell you nothing, cost you money, and require Mister to undergo anaesthesia. Not a thing I would undertake lightly with an acro.
     
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  15. MisterBillie

    MisterBillie Member

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    No symptoms or signs they ever even did SRT. I was seeing these better numbers in the week before the first day of SRT.

    How do I know I didn't just pay to have my cat kenneled for three days and they didn't even do SRT? lol. There'd be no way of knowing.

    Thanks for confirming. So there's basically no reason to do the CT scan other than academic curiosity.
     
  16. MisterBillie

    MisterBillie Member

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    Still no signs SRT did anything at all. His insulin requirements are now over 31 units again, I have to buy new syringes with extra capacity again.

    It appears the daily cabergoline is apparently not doing anything anymore. Probably won't be buying more once it runs out.

    In a decade or more, we will look back and realize this is the wrong treatment. We know absolutely nothing about what IAA actually is or how to solve it. And that point is almost moot, because Insulin is not the correct medicine for this disease, it's a total bandaid solution. IAA is god's way of telling us this.

    This is absolutely atrocious that our pets are dying while there's literally a medicine out there that actually works that no one can afford due to price gouging (Signifor/Pasireotide).

    Has anyone tried Paltusotine?
     
    Last edited: Dec 11, 2022
  17. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    From what little I could find on paltusotine, sounds like there are still studies ongoing in humans. I don't know if it's generally available or used anywhere. Note, not all drugs that work for humans also work for cats, so there would have to be studies on felines too. So no, there won't have been studies on cats, much less anyone who has tried it yet.

    In this paper, (2020) Updates in Feline Diabetes Mellitus and Hypersomatrotropism there are some additional downsides listed to pasireotide. First, only 20-25% of cats went into remission in the small study done using it. The drug doesn't actually treat the tumour, so the effects of the IGF-1 and grown hormone do not normalize. That leaves surgery, or hypophysectomy as the old treatment that actually cures the disease. Unfortunately it's performed in very few places, and also has risks associated with it.

    IAA is very little studied. The only research studies I've seen on it were contradictory, and on just a handful of cats each study. Practical experience here has shown that getting a cat safely to a dose that has as much normal BG numbers as possible does help and limits the IAA taking over. Some people find the switch to Levemir helps, possibly by confusing the antibodies.

    As for Mister, it's hard to say what his dose should be. His spreadsheet is not up to date. Plus I see hardly any mid cycle tests so have no clue if he's over or underdosed.
     
  18. MisterBillie

    MisterBillie Member

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    I've lost pretty much all my motivation to keep up the mid-cycle tests, they really don't tell anything useful. I was expecting his numbers to drop soon given it is several months after SRT. Now I'm faced with the reality that I have to start doing 2u increases again, in which case I would definitely resume doing mid-cycle tests.

    I'll update the spreadsheet in the next few days when I get time. The TLDR version is he's stuck in high 200s to high 300s.
     
  19. FrostD

    FrostD Well-Known Member

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    As Wendy mentioned - there is no guaranteed curative treatment for acro. Both the surgery and SRT have the potential to be, but I've seen quite a few relapses here where they weren't able to get the whole tumor and there was regrowth. In the case of SRT, we know that can take up to 2 years to see full effects given that it works by neutering cells - and even then no guarantee of remission.

    Cabergoline and pasireotide are bandaids, yes. They work by inhibiting the growth hormone, with varying degrees of "success" in various cats. The South American study showed it works best in tumors under a certain size, with very limited evidence it may shrink the tumors in some cases.

    IAA I view as more annoying than anything honestly. It's the acro that's the real pain.

    You mentioned 2U increases ...that's probably not enough at his dose. I think you'd be looking more at 3-4.5U increases (10-15% of the total dose), but that's assuming he isn't dropping lower midcycle.
     
  20. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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  21. Jodey&Eddie&Blue

    Jodey&Eddie&Blue Well-Known Member

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    Hello, I'm coming in late to this discussion if only because living with two acrokitties takes up a lot of time and I have a full-time job (or maybe the FT job is the acrokitties).

    Anyway, it looks like you and Mister Billie have had quite the time of it. You can see by my signature that I appreciate the blend of hope, anxiety, despair, resolve, reset, you name it in living with an acrocat.

    Eddie, the black cat (who is actually Blue's [the tabby] biological brother) was diagnosed with acromegaly about 3 years after his brother. Both cats have had hypophysectomy and SRT. Blue had SRT and fractionated radiotherapy (a much longer process that SRT) and Eddie has had SRT twice, this latest because of a regrowth of the tumour and the first time because they couldn't get all the tumour in the surgery. Sooooooo, Eddie just had SRT abut 6 weeks ago and I think it's starting to make a difference. But I have to tell you, the first time he got it, I saw nothing for nearly a year.

    I see Mr. Billie got SRT in August and so I'd have to say, it just takes time and sometimes it feels as if nothing is happening. When I think this I remind myself we are dealing with cells and trying to disrupt the ability of cells to make more of themselves...So, this is to say that Mr. Billie's SRT was only 4 months ago and things are still going on. When Eddie's BG went stratospheric, I thought to myself that the tumour is desperate and is pumping out GH as much and as fast as it can (if one can attribute intention to a tumour, but I digress...).

    When Eddie went into SRT six weeks ago he was at 27 units BiD (Levemir, switched awhile back from Lantus) and now, as I said, he's at 13u and I feel there's more to come. Honestly, you might hold to that as well. Things are going on at the cellular level and it takes time.

    I don't know about Cabergoline (although I was willing to give it a try if we could not do the SRT) and I've just checked out the Paultosotine and see that it's not gone through clinical trials on humans yet, although there seems some promise there. Don't know about cats. And, the cost of Paseiotide is unreal.

    Beyond the call for patience all I can suggest is that you give the SRT a little more time to do its work before throwing up your hands. It's frustrating but really, "something" is happening whether we can see it or not.

    Best of luck to you and Mr. Billie. :bighug::cat::)
     
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  22. Larry and Kitties

    Larry and Kitties Well-Known Member

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    ]
    \It took many months for the Cabergoline to have an effect for my Snuffles.I started the cabergoline relatively early when he was only up to about 16 units of insulin 2x daily. It took many many months to see and reduction in dose. I started almost exactly two years ago. His dose is now 9 units twice daily. His PSs are between 100 and 130. I got my vet to run the MSU test early since I previously hat, MurrFee who also had acromegaly and I only treated him with insulin. He was up to a little over 50 units 2x daily be his demise. That took less than 2 years. I only test Snuffles' BG before each shot. He can be mean and sent me to the ER for stitches one and just to the Dr another time. This is in addition to minor bites that required no treatment except cleaning myself. I can test him before each shot since I I bring his filled blown in and test him when he knows he is being fed.
     
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  23. MisterBillie

    MisterBillie Member

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    I updated my spreadsheet.

    I am incredibly blessed in this regard. I have no excuse not to be testing him more often, I work from home. The reason is laziness and also my cat lets me know if he needs anything at all, super vocal and I can basically read his mind at this point.

    Mister reminds ME of shot time, and he excitedly jumps up to his staging area and goes logcat mode and waits for me to load up the syringe, get food in a bowl, and load a test strip and grab a lancet.

    I should really make a video of it, none of the videos online that show how to ear test are as dialed in as my technique. If done properly, the cat literally thinks it's a neckrub and headrub session. Admittedly, I am lucky my cat doesn't mind the sting of the insulin. It's important to do the ear test before presenting the food, THEN present the food and let him begin eating before you do the shot. Ear testing the cat while its trying to eat will drive them nuts.
     
    Last edited: Dec 27, 2022
  24. MisterBillie

    MisterBillie Member

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    Finally seeing reduction in his BG numbers which started almost exactly on Christmas day and is still holding true into mid January. @FrostD

    Is it possible to disambiguate what is actually causing this reduction? It could be one of or a combination of three things:
    - this Insulin Glargine just defeated the IAA
    - the Cabergoline
    - SRT finally showing signs of helping with the HST/acro

    I wonder at what point should I stop the Cabergoline? It's not conclusive if this ever was doing anything. But at the same time, it is a distinct possibility this is literally what is causing the lower BG numbers.
     
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  25. FrostD

    FrostD Well-Known Member

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    It is definitely hard to say. IAA tends to be more dramatic, so that's a lesser possibility (but still possible). It's been quite awhile since starting cab, so also lesser possibility. SRT is most likely, but I suspect it's some sort of mix of all 3.

    I'd consider weaning the cabergoline now. If you see a change, then you know it was helping somehow and can choose to restart it.
     
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  26. MisterBillie

    MisterBillie Member

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    From an all-time high of 36u down to 3u. What a ride! I have had him off Cabergoline now for a few days, so far so good.

    I suppose any further reductions will have to be in 0.5u increments. I barely remember when I used to do anything less than 1u changes.
     
  27. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Nice to see that lower dose now.:)

    At 3 units, reductions are by 0.25 units at a time with the dosing methods we use here. What criteria are you using to decide if a reduction is needed?
     
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  28. MisterBillie

    MisterBillie Member

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    Good to know, I figured that might be the case. Time to get syringes with 1/4 marks again.

    If he has pre-shot numbers in the 80s or less for more than a day in a row. Admittedly I've been too lazy to do mid cycle tests because his curve is so predictable and flat. Might do a mid cycle test tonight for the heck of it.
     
  29. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    It's entirely possible his cycles could change as he gets to lower doses. Wouldn't want to miss a reduction!
     
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  30. FrostD

    FrostD Well-Known Member

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    Glad you're seeing results!
     
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  31. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    I am so excited to look at his spreadsheet. The results that you have had with the SRT are amazing. I wish everyone had such great results. I’m really really happy for you and Mister!!
     
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  32. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    Who did his SRT by the way?
     
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  33. MisterBillie

    MisterBillie Member

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    UMN VMC (University of Minnesota Veterinary Medical Center). It was quite unnerving deciding on going with them, because they informed me their machine would occasionally throw errors and just stop working for the day and then go out of commission until it could get repaired. So I had to pray to the RNG gods that that didn't happen.

    They have since gotten a brand new machine there from one of their donors, so that is no longer a problem. (Edit: Looks like they are still installing new machine according to this: https://www.vmc.umn.edu/about-us/specialties-services/oncology-radiation).

    I have to update my spreadsheet and will do it tonight, but Mister is down to less than 1u of insulin now. I had to miss his shot last night so I just skipped it and he tested 90 this morning. I will have to read up on what criteria I should be looking for to where I can go OTJ (off the juice/insulin).

    It is looking like against all odds, he is either in remission or knocking at the door. Thank God. Having an ADHD male ginger cat to play nurse for has taken every bit of mental fortitude these last 15 months.
     
    Last edited: Apr 10, 2023
  34. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    That is fantastic news! Let us know when the SS is updated, and we can provide guidance.
     
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  35. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    Such great news! I saw this earlier today and was just thrilled! I’ve been thinking about it ever since. Mister is like the poster cat for successful SRT. I’m very happy that you were able to afford to have this done and that you got it taken care of before he experienced any other health problems. It’s actually amazing how fast it has worked. When I read about humans who have had SRT, they say it can take years to bring growth hormone levels down. Anyway, this was really great news to hear today and cheered me up a lot! I hope he will be very happy and healthy for many many more years!
     
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  36. MisterBillie

    MisterBillie Member

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    Spreadsheet updated.

    Thanks everyone for the support and kind words.

    Definitely hoping he stays in the greens while OTJ. Not out of the woods yet. I guess we'll know more in a weeks time.

    I kind of wanna get an AlphaTrak now just to make sure where he's actually at. 90 * 1.35 = 120 which is on the high side of normal range for a cat.
     
  37. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    No need to buy at AT (besides which, the AT2 is being phased out and you won't be able to buy strips for them in September). We know what is normal range for cats if tested on a human meter. Not sure what the "* 1.35" means?

    Cats not on insulin mostly hang out in the 50-80 range, though some test in the 40's too. One of mine did.

    For now, you could try just seeing how he does with no shot. Continue testing at what were your AMPS and PMPS times. If he's green then OK, if not then post here and we can talk about what to do. If he goes 14 days with no insulin, he's officially OTJ. Day 1 is done. :D When you get a chance sometime, it'd be interesting to get a test about 3 hours after his main meal, on a day you have a preshot test too. That would show us if he's going lower after eating as his pancreas works. He might be going into that 50-80 range mid day.
     
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  38. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    So far very good for 8 months post-SRT. :cat::cat::cat:
     
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  39. MisterBillie

    MisterBillie Member

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    76 for AM test. Not gonna lie, I cried tears of joy. I know it's too early to say for sure, but man that's a good sign of remission being possible.
     
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  40. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Go Mister Billie! You can do this.:D
     
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  41. MisterBillie

    MisterBillie Member

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    Ah, good to know about the AlphaTrak. I wonder what is replacing it? The 1.35 was regarding how human meters read about 35% lower than an AlphaTrak/feline meter or a fructosamine test would.

    I thought the normal range was 80 to 120 on a feline meter?

    I did the +3 test, same as the +0. (in the 70 range).
     
  42. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    I see some people are using the Alpha Trak 3 so that must be the replacement.
     
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  43. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Love the 70's consistency. Still might be a bit of depot from when you were shooting 1 unit, or thereabouts. If he's still hangs here the next day, things will be looking really good. Not all acros have working pancreases after being diabetic for a while, but looks like you may be in luck.

    The AT3 is the replacement, AT2 strips will no longer be available in September. Zoetis bought the pet meter business from Abbott, it was just a matter of time until they changed the meters.
    Not so, it really varies depending on the human meters being used and the pet meters. We've had people do comparison tests between the AT2 and their human meter, and not find any consistent comparison, much less between human meter brands or meters used by a different person. That's one of the reasons we suggest people pick one meter, and stick to it.
     
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  44. MisterBillie

    MisterBillie Member

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    He's testing in the 60s now @ 9 days OTJ trial! Somehow going lower!
     
    Last edited: Apr 19, 2023
  45. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    CONGRATULATIONS! This is such wonderful news! You must be really happy. I’m so happy to have one of our acro cats go OTJ.
     
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  46. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    We consider 14 days/28 cycles an OTJ trial before officially OTJ. 18 cycles done so far. :D Then we'll have a PARTY!
     
  47. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Looks like Billie is officially in remission! :otj:
     
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  48. MisterBillie

    MisterBillie Member

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    Yes, interesting timing with your post. I just happened to test him not 5 minutes ago. He tested 83.

    I am unbelievably lucky. Mister is living his best life. Daily walks outside and gets to enjoy himself lying on the garden watching birds, deer, and turkey.
     
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  49. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    That's an awesome update! A quarter of SRT kitties are supposed to go OTJ, but experience here has been lower than that. Nice of Mister to bring up that average.
     
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  50. Suzanne & Darcy

    Suzanne & Darcy Well-Known Member

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    CONGRATULATIONS! I am really happy for you and Mister!
     
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  51. Howiesmom

    Howiesmom Member

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    such a lucky kitty!:bighug:
     
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