Acromegaly-newly diagnosed UK

Discussion in 'Acromegaly / IAA / Cushings Cats' started by FreddyMad, Apr 16, 2014.

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  1. FreddyMad

    FreddyMad New Member

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    Mar 23, 2014
    Hi,

    My cat Freddy has been diagnosed with Acromegaly. I am so devastated. He is on 6 units of Caninsulin twice a day but he has been having seizures everyday. They seem to be getting worse, he is in a bad way and the vet said we can try a different insulin or that we should think about 'ending his suffering'. I really do not know what to do. I live in Northern Ireland. Can anyone give any advice at all?
     
  2. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Hello and welcome. What is your name? So much nicer to have your name as well as Freddy's. :D My kitty Neko was diagnosed with diabetes 2.5 years ago and from her tastes in food (bread, muffins, etc.) I figure she had acromegaly a couple months before that. How was Freddy diagnosed with acromegaly?

    We also started on Caninsulin. You do want to change insulin. I know Lantus is available in the UK for kitties, you can also ask about Levemir which can be easier on high dose cats. Lantus's ph level can sting at higher doses. Having said that, we've had members with cats on as much as 25U of Lantus so it depends a bit on the cat. Both of these insulins, we call them the L's, have longer duration in cats so you'll see less wild swings that you do with Caninsulin. With Neko, the Caninsulin wore off a couple hours before her next shot and she was starving and we were both miserable.

    What are you feeding Freddy? Low carb wet food is also essential to help control blood glucose. A couple of members have listed foods good for Europeans http://www.felinediabetes.com/FDMB/viewtopic.php?f=28&t=64843 and diabetic cat food in the UK.

    And the last key to helping Freddy is to do regular blood testing at home. We use glucose meters designed for humans and test before each shot and in between shots to see how low kitty is going on that dose. Caninsulin is known for getting more hypoglycemic episodes due to it's fast drops. Is that the kind of seizures you are seeing? Using one of the L insulins, and home blood testing will help you make sure you are giving the right dose for Freddy. Plus it's cheaper than taking the cat into the vets for blood testing. Don't change food unless you are blood testing at home, as it can make a significant change to insulin needs.

    Feel free to ask questions - we love to help here. It can be rather overwhelming. There is a lot to read and learn for the first while but we've all been there. :YMHUG:
     
  3. FreddyMad

    FreddyMad New Member

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    Mar 23, 2014
    Hi Wendy,
    Thank you so much for your reply. My name is Deirdra.
    Freddy has been on a diet of Bozita for a while now and he receives no dry food at all. He started on 4.5 units Caninsulin twice a day and has been moved up to 6 over the last while. The episodes he has are very frightening. He begins to walk funny then collapses, goes to the toilet and just lies there. He also breathes very fast during them and takes about 20 minutes until he is ready to get up. He first had a fit about a month ago and that is when his diabetes was diagnosed. He had another one but since Sunday he has had 4-one per day. Do you think maybe they sound like hypos?
    He was also found to have an enlarged left atrium which prompted the vet to test for acromegaly. We tried HyperCard but he did not react well to it.
    I have been reading about Levemir and think that sounds like a good option. I had been hometesting though not as much as I should as Freddy gets so stressed by it. I was getting numbers like 18 and 19 and on my most recent test he got 11. With all he has been going through these last few days I haven't tried it. I am very afraid that the seizures are being caused by the tumour.
    Deirdra.
     
  4. Elizabeth and Bertie

    Elizabeth and Bertie Well-Known Member

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    Sep 6, 2010
    Hi Dierdra,

    Has Freddy had the IGF-1 test? And if so, what was the result?

    Huge hug to you,

    Eliz
     
  5. Elizabeth and Bertie

    Elizabeth and Bertie Well-Known Member

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    Sep 6, 2010
    Me again, Dierdra,

    Did Freddy have any of these odd 'episodes' before he started on insulin?

    And regarding the blood glucose test results you've given, when exactly were those taken? (Before giving insulin shot, or after insulin shot (and if so, how many hours after..?))

    It's just that the symptoms you describe sound similar to some hypo symptoms. Have you tested Freddy's blood glucose during or after one of these episodes?

    Hugs,

    Eliz
     
  6. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Hi Deidra. Elizabeth asks a good question - we use the IGF-1 test here as the first test for acromegaly. It cannot be definitively diagnosed without a CT scan or MRI of the pituitary gland but a high enough IGF-1 value is a pretty good indicator and that's as far as most go for testing.

    Do you have an idea how many hours after the shot Freddy has been having those episodes? I would worry about hypo it it's anywhere near nadir. The first step would be to test him when he gets like that. And apply syrup to his gums to bring up his numbers if he is low. Here is a post on hypoglycemia.
     
  7. FreddyMad

    FreddyMad New Member

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    Mar 23, 2014
    Hi Eliz,

    Thanks for your reply.

    Freddy had the IGF-1 test and the result was 2000. Freddy had one episode before he began insulin. We rushed him to the vet and they said his blood glucose was 'off the scale' so they started him on Caninsulin right away. He had his episode 10 hours after his insulin yesterday and 8 hours after today. I haven't tried to take his blood during an episode yet. His 18 and 19s and 11 were all after the insulin between 3 hours and 7 hours after his shot.
     
  8. Grayson & Lu

    Grayson & Lu Well-Known Member

    Joined:
    Jan 9, 2012
    Hi Deirdra -

    I'm Lu-Ann and Grayson is my big guy.

    We are all committed to the testing before shots here, and also mid-cycle tests. It's good to know where our guys are going - especially if we're away at work or elsewhere - we can't always be tied to home and kitty.

    My first thought, since you've had 4 episodes that sound like hypos to me, I'd cut the dose... at least in half. Although I'm not familiar with the insulin, it seems like a fairly high dose for starting out. If you can do a curve, hopefully soon, one day when you're home, that will give you an idea how low and quickly his BG changes. A curve is testing every 2 hours and recording his numbers; usually from the morning test/shot through til 2 hrs after the night test/shot. It will help you see if he's responding to the insulin and/or food, or both. Likewise, if you've changed to canned food since his diagnosis, it may be that he has considerably lower insulin needs or even none at all. I have another kitty at home and previously had a foster - both of whom are/were diet-controlled. No insulin needed. It's what we all aspire to have!

    Because of his Acromegaly, Grayson was RAVENOUS!!! He got into cannisters of kibble & dog chow, he even got into egg noodles in my pantry cupboard. Nothing on the counter was sacred - he sought out food. We have an expression in the Acro group "FEED THE BEAST!" Think of them as an active teen-aged boy. They can eat a ton, because their growth hormones are REALLY active. Same thing here, for the most part, but it's the pituitary tumor that's causing an over-abundance of growth hormones being produced. They need food - and preferably the low carb variety.

    The scale for IGF-1 testing is a little different in the UK, although I think it's about 10X the numbers we use. Anything over 1000 is a positive indicator of Acromegaly. In the US it's >92. It's not "official" until the tumor is seen, though there's often other symptoms and behaviors that appear sooner or later, and somewhat obvious to those of us that look at them daily.

    Grayson had stereo-tactic radiation therapy nearly 2 years ago in Colorado, USA, and is doing exceptionally well. Others have had different kinds of treatment here and abroad. My friend Amanda lives in London, and her cat Betty was in the Pasireotide Study at RVC. They also have been successful at the surgical removal of the tumor. You are fortunate to be so close to the leading center for research/treatment in the world. CSU has probably treated more kitties than elsewhere, and Dr. Lunn (a Brit) headed the research at Colorado State before she moved to North Carolina - where Grayson has seen her twice now. I'll be happy to tell you more about anything I've experienced or learned, but I remember how my head was spinning when we got the initial diagnosis. Please let me know how I can help you.

    Lu-Ann
     
  9. FreddyMad

    FreddyMad New Member

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    Mar 23, 2014
    Hi Lu-ann,
    Thank you for getting back to me.
    I changed Freddy's diet before he started the insulin. I will try to get a curve but I am keen to start new insulin as soon as possible as I just don't think the Caninsulin is doing him any favours. He has been drinking and urinating a lot which makes me think that his blood sugars are high. What insulin do you use for Grayson?
    Deirdra.
     
  10. Elizabeth and Bertie

    Elizabeth and Bertie Well-Known Member

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    Sep 6, 2010
    Hi Dierdra,

    Caninsulin has a short duration and, in some cats, can be 'done and dusted' in as little as 8 hours. That means that a cat can, potentially, have no insulin in it's system for a third of each day (although ECID ('every cat is different')).

    There are 3 longer lasting 'human' insulins in the UK that are good for cats. These are Lantus/Glargine, Levemir, and Hypurin bovine PZI. All of these have long durations (the Hypurin PZI is specific to the UK and has a longer duration than the other PZI's that US folks may be familiar with.) These insulins typically drop the blood glucose much more gently than Caninsulin/Vetsulin, and their long duration means that the doses 'overlap' somewhat, delivering a more consistent dose of insulin. This can help to keep the blood glucose levels more stable.

    BTW, I think Lu-Ann uses Levemir for her kitty, Grayson.

    Eliz
     
  11. Elizabeth and Bertie

    Elizabeth and Bertie Well-Known Member

    Joined:
    Sep 6, 2010
    The episodes/seizures you describe could be hypo-related, but also sound like epilepsy. (And given that Freddy had one episode prior to starting on insulin that episode at least was not caused by injected insulin (although it doesn't mean that the others weren't. Maybe there's more than one cause.))

    Perhaps the tumour is causing the seizures. I don't know how common seizures are in acrocats, and maybe experienced acrocat folks here may know the answer to that...?
    And has anyone here been prescribed anti-convulsants for their cat? And if so did that help...?

    Eliz
     
  12. Grayson & Lu

    Grayson & Lu Well-Known Member

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    Jan 9, 2012
    Elizabeth is correct, Grayson is on Levemir (detemir). Not sure if it's available in the UK, but certainly worth asking. Lev is pH-neutral, so for higher dosers, it seems better for Acros, as it doesn't sting at injection.

    Any new news?

    Lu-Ann
     
  13. Blue

    Blue Well-Known Member

    Joined:
    Dec 28, 2009
    I would not think the events are hypo type but rather more likely to be seizures. Acros have them, and I was present to videotape one which was shown to the acro owner's vet and confirmed as definite seizures. The owner can tell you more on the dosing that worked well for her acro.

    If you are able to record one of the seizures, if your vet has not seen one, it will help the vet to diagnose.
    The medication that can likely reduce the seizures would be phenobarbital, so speak to your vet about it.

    Your insulin is a medium lasting insulin and not at all suited for cats with acromegaly. You can speak to your vet about switching to Glargine (Lantus) or if lucky, ask your vet about switching to Detemir (Levemir) which is the most commonly used insulin for feline acromegaly.

    Now, your caninsulin is still of use to you because you can use the caninsulin in a smaller dose as your bolus insulin, to pull down the higher numbers you get when testing Freddy in the numbers 18 and higher.... at shot time, if he is testing over 18, you can give a smaller shot of caninsulin and also a shot of your Lantus or Levemir, whichever your vet switches you to use instead of caninsulin. There is a UK member in our acro group who used such a system for her acro. You will be better off with Lantus or Levemir than PZI for an acro cat.

    Both Lantus and Levemir are the good insulins for acro cats, but some react better to Levemir.
    I had two acro cats and one was much more tense on Lantus but calmed in 2 days after switching her to Levemir.
    My other acro was fine on both but did seem a bit better in his curves on Levemir.
    Lantus has more extreme numbers than Levemir, which is much smoother with less diff between the high and low of cycles.

    Gayle
     
  14. Blue

    Blue Well-Known Member

    Joined:
    Dec 28, 2009
    I would not think the events are hypo type but rather more likely to be seizures. Acros have them, and I was present to videotape one which was shown to the acro owner's vet and confirmed as definite seizures. The owner can tell you more on the dosing that worked well for her acro.

    If you are able to record one of the seizures, if your vet has not seen one, it will help the vet to diagnose.
    The medication that can likely reduce the seizures would be phenobarbital, so speak to your vet about it.

    Your insulin is a medium lasting insulin and not at all suited for cats with acromegaly. You can speak to your vet about switching to Glargine (Lantus) or if lucky, ask your vet about switching to Detemir (Levemir) which is the most commonly used insulin for feline acromegaly.

    Now, your caninsulin is still of use to you because you can use the caninsulin in a smaller dose as your bolus insulin, to pull down the higher numbers you get when testing Freddy in the numbers 18 and higher.... at shot time, if he is testing over 18, you can give a smaller shot of caninsulin and also a shot of your Lantus or Levemir, whichever your vet switches you to use instead of caninsulin. There is a UK member in our acro group who used such a system for her acro. You will be better off with Lantus or Levemir than PZI for an acro cat.

    Both Lantus and Levemir are the good insulins for acro cats, but some react better to Levemir.
    I had two acro cats and one was much more tense on Lantus but calmed in 2 days after switching her to Levemir.
    My other acro was fine on both but did seem a bit better in his curves on Levemir.
    Lantus has more extreme numbers than Levemir, which is much smoother with less diff between the high and low of cycles.

    Gayle
     
  15. FreddyMad

    FreddyMad New Member

    Joined:
    Mar 23, 2014
    Hi everyone,
    Thank you all for your help. I have not been back on here until now as we had to put Freddy to sleep on the 17th of April. His seizures started to come very frequently and he had one on 16th April that he couldn't seem to come out of. We had to call the vet out in the middle of the night .Freddy's back legs seemed to have gone and he told us the kindest thing to do would be to stop his suffering. It was one of the hardest decisions I have ever had to make .I cannot help but feel like we failed him. He went downhill so very quickly. The vet had ordered the new insulin but poor wee Fred never got te chance to try it. I just miss him so much. He was such a special and funny little boy.

    Thank you all again for your advice.
    Deirdra x
     
  16. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Oh Deirdra, I'm so sorry to hear of your loss. :YMHUG: It sounds like poor Freddy had a saddle thrombosis episode, perhaps due to his heart. I lost a kitty to that a couple of years ago. It's so sudden and hard to handle and far too common in cats with acromegaly. :cry:

    You were doing such a great job with Freddy and did the right thing by him.
     
  17. FreddyMad

    FreddyMad New Member

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    Mar 23, 2014
    Thank you for your kind words Wendy. I was wondering myself if perhaps that had happened to him. At least he is not suffering anymore. Hope Neko is keeping well x
     
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