Agromegaly result, how to interpret?

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suki & crystal (GA)

suki & crystal (GA)

Member Since 2014
I have previously been posting under the Agromegaly forum but was advised to post here on the Lantus TR forum (although I am not currently following the TR but would just like to post occasionally for advice) in order to get a wider audience. Apologies for the repetition to those of you who have seen my posts already and many thanks for all the support and advice offered, especially from Julie. Crystal was diagnosed with Acromegaly on the 12 Nov this year by the IGF-1 test done by the National Veterinary College in Nantes (SW France). My vet just told me it was “positive” and I didn't receive any paperwork. I have since asked for the exact number and was told “her results were way off the scale” and more in line with somebody weighing 300kg which is all a bit confusing. The meter they used has a maximum scale of 1200 (would this be mg/dl??) The College recommended a change from Caninsulin (8u BID) to Lantus at 3u BID which I started the next day. Apart from that, they offered no guidelines on agromegaly and it is the first case that my vet has seen. There doesn't appear to be any option of surgery or trials being conducted here. I notice from the other acrocats that their results are nowhere near Crystal's - does anyone know how to interpret her results properly?

I have since increased her dose to 3.5u BID (following recommendations from the forum and my vet) and I've recently completed her first curve. Her SS is up to date (although it appears there is a gremlin somewhere and the +7 and PMPS from yesterday are missing on the US version - I have to colour code manually but I hope it's readable. I haven't completed her profile yet). Her BG levels seem to be generally lower since starting Lantus although she is still mainly in the low to mid 20's (her highest point on Caninsulin was 31 and the lowest 12.2).

Also I'm using the BD Micro-Fine U-100 0.5ml syringes but finding it difficult to judge halfway between 3u and 4u. The pharmacy says there are no syringes available with 0.5 increments but if anyone knows different please let me know and I'll try to get them via the internet. (Wendy mentioned one used for children, BD Ultrafine II?)

I'm feeding Crystal raw chicken (no bones) with TCPremix Plus supplement (175g daily) plus topping up with GranataPet low carb tinned since the beginning of November, previously she was on Felix wet pouches. She has a large pot belly but since starting the raw diet her diarrhoea has been cured although she is still hungry all the time and also drinks excessively.

I've been invited to join the FB forum on agromegaly which I may well do at a later stage but for now I'm just keeping all the info in one place but would love to hear from other members with acrocats.

Suki & Crystal
 
Hi Suki!

Welcome to the TR forum. You'll find several people whose cats have acro here and they can be very helpful. I see you're in France, and I'm not familiar with what treatments they have available over there. Lantus is an excellent choice to treat a cat with acro. Levemir is also an option, although I don't know if it is available there either.

I didn't have Cobb tested for acro, but everyone here, myself included think he might be -- given the levels his insulin reached and some of the other symptoms I've described.

The TR forum is more active than the acromegaly forum, so you'll have more people with experience popping in to your condo and sharing their experiences.

I look forward to reading more about Crystal!

~Suzanne
 
Thanks for your welcome Suzanne, I much appreciate it. Unfortunately, I think we are way behind here in France so my vet will be learning from me as we go along no doubt. I keep quoting the FDMB to her every time we meet and that's where I picked up the possibility of agromegaly as Crystal just wasn't responding to the ever increasing levels of insulin - a change of vet last month, together with a change to Lantus, has made me feel a bit more in control. Levemir is available but the Lantus comes in the handy stylopen so we went with that one. Love your ginger boy Cobb, he looks like my Oliver many moons ago who was a complete terrorist but absolutely gorgeous, one of those special cats, like Crystal, that come into your life.

I hope to get up to date with Crystal's profile soon, it's great to get to know all the personalities, both furry and human.

Suki & Crystal
 
Welcome to Lantus Land!

You might ask your vet if the lab where the IGF-1 test was run provided a range for interpreting the results. The challenging aspect of lab results is that not every lab uses the same types of tests or even if they do, the range for what is considered normal/abnormal may be different.

There is a European association of veterinary practices (FECAVA - Federation of European Companion Animal Veterinary Associations) that has an office in Paris. You may want to contact them to see is there is any place in France that has experience with treating acromegaly if you are interested in looking into SRT as an option.

There are a few members who consistently post on this forum who have acro cats. Usually, we encourage you to increase the dose every 2 - 3 days until you start seeing better numbers. Typically the increase is in 0.25u increments until the dose is much larger.

If they are available in France, you might want to look into purchasing digital calipers. They are very helpful with dose accuracy especially if you can't get syringes with 0.5u markings. We have instructions available for using the calipers if you can find them.
 
Hi Suki - good to see you and Crystal over on this forum. The information we have here is that in the UK (and I presume Europe), any result over 1000 is considered positive for acromegaly. If you have a copy of the test paperwork, it might say what the ranges are. I always ask my vet to email copies of Neko's results, and hers listed the IGF-1 ranges as used here in North America. As I mentioned on your post on the High Dose forum, there isn't any correlation between the test number and size of the tumor.

As for syringes, if you look at the Tight Regulation Protocol sticky, about 5 paragraphs down, there is a PDF document called Management of Diabetic Cats with Long Lasting Insulin. It contains a description of how to use paper rulers for the BD Micro-Fine1 Demi 0.3-mL U-100 syringes, and has a link to a document you can print to help with that. If you can't find digital calipers, we have another member who uses a ruler with fine marking to measure smaller doses. Basically, any insulin syringe used for babies or young children should have 1/2 unit markings.

By the way, you do test enough to try the Tight Regulation Protocol if you wish. As part of that protocol, if you go 6 cycles without seeing blue nadirs (5.6 to 11.1) then you increase again by .25U, until Crystal's dose is over 5 units when you'd go to .5U increases. Of course, the 1/2 unit markings or a ruler/caliper are really needed then.

My Neko is also on raw food. Once you get Crystal's numbers more consistently under 11.1 (or 200 in the US system), her hunger and thirst will greatly diminish. Suzanne just posted a one year on FDMB condo for Cobb today. He has come a long way in this last year. Check out the reduction on litter usage.
 
Hi Suki!

You made it! YAY! I wouldn't worry too much about the exact number - you know it's positive and the size of the number doesn't seem to correlate to how bad the symptoms are in a cat or how difficult they are to get regulated. Although it's always good to have as much information as possible. I kept a folder on Punkin and got in the habit of getting copies of every vet lab & test done so I could bring them here for help in understanding them.

The Protocol is listed in phases - You are in the "increasing the dose" phase. Crystal will be in that phase until she's consistently in better numbers.

Here is from the Tight Regulation Protocol yellow starred sticky at the top of this group's main page.
Increasing the dose:
Hold the dose for 3 - 5 days (6 - 10 consecutive cycles) if nadirs are less than 200 before increasing the dose by 0.25 unit.
if your cat is new to numbers under 200, it is recommended to hold the dose for at least 8-10 cycles before increasing.
when your cat starts to see nadirs under 100, hold the dose for at least 10 cycles before increasing.
After 3 days (6 consecutive cycles)... if nadirs are greater than 200, but less than 300 increase the dose by 0.25 unit.
After 3 days (6 consecutive cycles)... if nadirs are greater than 300 increase the dose by 0.5 unit.

As long as you are seeing consistent high numbers - basically everything is over 300, you can increase every 6 cycles. I provided the Tilly version of this protocol on your last post. It says:

Tilly's Diabetes Homepage
Phase 2: Increasing the dose

Most cats need to have their dose increased. Do it in 0.25 IU or 0.5 IU steps (0.25 IU if the cat is getting a low dose and/or relatively low BGs, 0.5 IU if the cat is getting a higher dose and/or relatively high BGs). Hold each dose for 5-7 days. However, if the cat is producing continuously high BGs (nadir always >=300 mg/dl), only hold the dose for 2-3 days before increasing it by 0.5 IU. Alternatively, if the cat is continuously producing moderately elevated BGs (nadir always >=200 mg/dl), increase the dose every 2-3 days by 0.25 IU ( if the cat is getting a low dose) or 0.5 IU (if the cat is getting a higher dose). From this point onward test for ketones once per week, or more often if the nadirs are still >=200 mg/dl.
Click to expand...
Click to expand...

I like to point out this option to people whose cats are in constant high numbers (over 300) because it suggests increasing after 2-3 days, or 4-6 cycles. There is no point to holding a dose longer than that if it isn't getting a cat into better numbers. You can see it's not going anywhere, and you don't want to let a cat sit in high numbers longer than necessary.

Both the Tilly version and the FDMB version are both based upon the same Rand/Roomp protocol - they're just laid out slightly differently.

As I mentioned before, with an 8u dose on Caninsulin, it is likely she's going to need a higher dose than she's getting now. I would do what we call "fast-tracking" where the cat gets the minimum number of shots at each dose and is increased if the numbers suggest it. Toby just went through doing this starting about September 16th with 4.0u until he got to 12u in late October. You can find his thread (we call them condos, for the kitty condos where cats live) and take a look. Here is Toby's ss. Notice that Peg increased his dose every 4-6 cycles or so until he was consistently in better numbers. As you scroll through his spreadsheet, you can see the overall colors of the spreadsheet change as his blood sugar has improved.

As her blood sugar gets down into better numbers, under 200 or so, she'll feel better and her symptoms will improve.

By the way, Levemir also comes in the pens, just like Lantus.

Hope you're having a wonderful day!
 
Thank you all so much ladies for your great responses, I feel as if I have tapped into a wealth of experience now. It's taken me some time but I've read everything you suggested. I need a bit of hand holding at the moment so would the concensus among you be that I should increase Crystal's dose to 4.0 BID (currently 3.5) maybe starting tomorrow? My vet has asked that I phone her tomorrow anyway (she doesn't work every day) just for a progress report. I have the feeling she might flinch at 4 units but my gut instinct says to give it a try. my next task is find some half unit syringes although I have printed off the "measuring strips" template if all else fails.

hugs to you all and your kitties
Suki & Crystal
 
Crystal's SS looks, to me, like she needs an increase. I think, if your vet sees how much your testing to keep Crystal safe, there's not much she can really say about incresing the insulin. Cobb got up to 31 units on Lantus. My vet's eyes about bugged out of her head when I told her the dosage, but when I showed her our SS, she said she could see exactly how he was handling the dose and it obviously wasn't too much.

Good luck Suki! I hope Crystal responds to the increase!

~Suzanne
 
Most vets don't have a lot of experience with diabetic cats because so many owners just euthanize their cats with the diagnosis. If they do have diabetic cats, it's even less common that they have experience with the high dose conditions. We see a lot of them here, because this is where diabetic cats show up. Probably one in 10-15 or so cats here have a high dose condition. I haven't counted, but it's not uncommon. We have kitties with only acromegaly, kitties with only insulin auto-antibodies, and kitties with combinations of the two conditions. We also have high dose kitties that haven't been tested for anything so we don't really know why they need more than average amounts of insulin.

I wanted to give you this link to bookmark. Hopefully you'll find it helpful. Notice in the "New to the Group" sticky, near the bottom, there is a collection of single-topic posts, including a couple on acromegaly and insulin-resistant conditions. If you're interested in reading more on the topic, you can look there.

When you talk with your vet, would you ask the rationale for dropping so drastically from 8u Caninsulin to 3u Lantus? I understand that someone mentioned the weight formula, but I'm still really concerned about this dose being so much lower than the previous dose and the way she is sitting now for days in these high numbers. I can't help but wonder if your vet saw these constant over 300's if she wouldn't think that this is too low of a dose.

You might just come out and ask her if she has much experience in handling dosing for a high dose cat.
 
Okay, I've just spoken to my vet and told her that I wanted to increase Crystal's dose to 4 (I had already done this morning's shot at 4) and she agreed with me that getting her into the 200's was the main criteria so at least she is on side. There are only a couple of cats under the surgery with diabetes and none with agromegaly and none of them have high doses but at least she is receptive to an increase and asked me to let her know the results in a few days.

Julie, I think the rationale for dropping from Caninsulin 8uBID (previously it was as high as 10uBID) to Lantus 3uBID was taken by the National Veterinery College who did the agromegaly test, this is one of the top colleges in the country and passed on their recommendation to my vet, but I think they erred on the side of caution with a low starting dose. Anyway, hopefully we are on the right road now with increases every 3-4 days until we get it right. By the way, your "where to find" ... post is brilliant, just what I needed all in one place, many thanks, I know I shall refer to it consistanly (I might even be able to post a photo soon!)

Suzanne, your recent post "One Year on FDMB" struck a cord with me (I'm going to run off a copy for my hubby who is a bit sceptical about all forums) and has given me inspiration and confidence, thank you.

Thanks to all for your support, just got a "yellow" BG reading instead of a "pink"!!
Suki & Crystal
 
suki said:
Suzanne, your recent post "One Year on FDMB" struck a cord with me (I'm going to run off a copy for my hubby who is a bit sceptical about all forums) and has given me inspiration and confidence, thank you.
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Suki, you can totally do this! Sounds like Crystal is lucky to have you!!

I totally understand the position you're in with your hubby though. Mine was initially the same way...wary of advice given by, let's be honest, Internet strangers. When I friended a few on Facebook, he said "are you friending your cat people? You don't really know them!" Now when I have a question, he says "Why are you asking me? Post on the board! Ask Julie or Wendy or Donaleen, they are a wealth of knowledge and can give you a better answer." So, I've made a believer out of him. :smile:

I'm glad your vet is receptive to the increase. You'll find a lot of us only use our vets for annual exams and prescriptions. We don't really consult with them about dosing anymore. The protocol works...but high dose cats make their own rules. Sadly, there are no guidelines for our big gulpers. Probably because each is so different and you can't put a blanket set of rules over all of them.

Keep asking questions. I tell people, you'll learn more about FD and insulin than you never knew you wanted to know. :lol: Stick with it. We'll be here for you, every step of the way!

~Suzanne
 
Thanks Suzanne, I do certainly intend to stick with it having come this far, I only wish I could have got Crystal on Lantus earlier. Hubby is very much a cat person (and a dog person too) but just thinks I'm spending too much time sitting at the computer - he's right, I've spent all afternoon trying to load a pic of Crystal to no avail, I get so far and then get stuck. Never mind, we have friends coming over on Saturday so I have a little job for him, it can wait until then, it's not important but I thought you all might to see how gorgeous she is.

Just off to prepare a kilo of minced chicken for Crystal for the next few days!

Suki & Crystal
 
Try using this site to resize your pictures so you can post them: http://www.shrinkpictures.com/

We do like to see pics of the kitties! :-D

Yay for moving into yellow! What Suzanne said is really important - there aren't any dosing protocols specifically for high dose cats. We take the TR protocol here and modify it to fit the needs of each cat, depending on what they need. But what we do know is that the first goal is to get any cat under renal threshold to protect their organs. That's a top priority. Adjusting doses every 4-6 cycles, depending on what the blood sugar is doing, until the kitty is under 200-250ish, is the safest way to move ahead.

Tomorrow is a national holiday in the US, so there may be fewer people around, but there are usually people making an extra effort to check the board throughout the day in case someone needs help. Just giving you a heads-up. There are also quite a few Canadians and other international folk who post regularly and would be likely to be around.
 
I tried that Julie and although it worked, the photo got lost somewhere between that site and my PC (I'm really not PC savvy !) but I'm sure my bright friend will sort it out later.

Back in the "pink" tonight but it's only the first day on the 4u so fingers crossed we will see a lower figure tomorrow. Talking of which, happy Thanksgiving to you all in the US, relax and enjoy your special day with your loved ones and I'm sure a little bit of turkey will find it's way into many kitty bowls tomorrow!

Suki & Crystal
 
heehee i might give mine some. I never give them table food, but it IS a holiday . . . :-D

When you get done shrinking the picture, you can download it to your computer. Then look under "downloads" to find it. Before I download a picture, I always look at whatever the crazy name is they've given it. With that site, it's often a string of p's and h's and numbers. Pay attention to the beginning of that string, and then when you look in your downloads folder they are typically (on my computer) arranged alphabetically.

If you have a pc, to find downloads look under "explore my documents" or "windows explorer" and under "computer." Or there should be an icon somewhere that looks like a set of file folders - that will get you there too.

If there is a + symbol to the left of the downloads (or any other) folder, that means you can click on the + symbol and more will expand and show underneath it.

If you have an apple, i can't help. I just use a pc.
 
Thank you! Thanksgiving is my favorite holiday - I love having the family come home, although my 3 kids are not coming home tomorrow. But my foster daughter and my mother-in-law are coming, so that's enough for a festive meal so DH & I are cooking the traditional meal. My other kids are all coming Friday and Saturday because Saturday is my birthday, so I'm looking forward to seeing them then.

Wendy has been doing some more research on acromegaly and found some interesting tidbits that she's going to add to the thread on Acromegaly in that "New to the Group" sticky that I mentioned earlier. Probably show up there in the next few days. :-D
 
Hi Julie
It worked! here is the pic of Crystal. :razz: Thanks for the heads up on Wendy's forthcoming post, I'll look out for it.

With very best wishes to you and your family for a great Thanksgiving, hope you have a wonderful time.

Suki & Crystal
 
Crystal is beautiful!

FWIW, my hubby had the same complaint about me spending too much time on the board when we first joined. It's a lot of info to learn and reading and asking questions helped me digest it, but I found I spend fewer hours on it as I got more comfortable.
 
Thanks Suzanne, it has kind of taken over my life at the moment but let's hope it gets less stressful as time goes on.

Hope you and your family, and of course Cobb, are having a wonderful Thanksgiving!
Suki & Crystal
 
great photo! She looks like such a sweetheart. It's funny how much personality you can tell from a picture.

Thank you - we're enjoying our holiday today. Some of the food is cooking, more still to get ready and family coming in about 2.5 hours.

by the way, you can increase every 4 cycles as long as you're still getting test results like this, with everything over 290's.

We encourage people to start a new thread (we call them condos) every day, so you might want to start a new one with your next post. :-D
 
Okay Julie, I'll do that (I wasn't sure of the procedure, this thread is getting quite long now). I'll wait until I have something to report. Enjoy the rest of your day, we are off to bed now.

Suki & Crystal
 
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