2/8 AMPS 323, +4 316, PMPS 313 Acromegaly Positive

Suzanne & Darcy

Member Since 2020
I am so upset. The vet just called a little while ago and Darcy's tests came back. The IAA test was negative, but his IGF-1 test was off the charts... something over 500!!! (I think she said 555, but I was in the car driving at the time and was in such shock that I didn't catch it exactly. We discussed a few things. She's going to check with some endocrinologists about the drugs that can be used to control this. I told her that I was aware of the STR treatment, but that I knew it was very expensive. She said that she's never actually had a client who "opted to treat" before. I said that I wanted to do the best I could for him as he 's only coming up on ten years and that he should have some more good years left in his life. I hope so. I'm so worried about what this will do to him internally... to all of his organs. Help.

Yesterday's post: https://felinediabetes.com/FDMB/threads/2-7-darcy-amps-366-3-329-7-337.242757/
 
Hang in there Suzanne :bighug: Sorry about the diagnosis but you'll figure out what's best. You're a loving mama bean :bighug::bighug::bighug: We are thinking about you all and sending prayers. I'm sure others will swing by with their experience (I have none here, just wanted to give you a virtual hug and big wet kisses to Mr. Darcy:kiss:).
 
I am so sorry! But I think there are quite a few in here that have had success caring for cats for a while with acro, I am sure you will find the right approach for Darcy. Have you visited the acro forum? People there might have more wisdom to share. Hang in there! :bighug:
 
Suzanne - you are not alone. :bighug::bighug::bighug: Darcy is still the same sweet cat he was before, he doesn't know he has acromegaly, and frankly doesn't care. But you now have an explanation for his appetite for insulin, and even better, it looks like you've been thinking about what you can do to help him. First and foremost is finding that an insulin dose that can move him, and we can help you there. At some point you may consider a switch to Levemir or at least watch injections to make sure it's not stinging him.

The IGF-1 number doesn't really relate to anything, other than over 92 is positive. Neko's was 440 at the time of her diagnosis. One member here's cat Howie was 83 in September and 532 last month. The number can vary over time and has no relation to the size of the benign pituitary tumour. Oh, and glad to see no IAA, one less complication to worry about with dosing.

A lot of acrocats are middle aged. Some are older, some younger. Pamela's Amethyst was 5 years old when she was diagnosed a little over 4 years ago. She has been on cabergoline for almost 3 years now. There is one other drug that has been used effectively in a study, call pasireotide, but I don't know of a single person that has actually used it in real life, because the drug is more expensive than even surgery or radiation therapy.

Please ask questions. I know I had a ton of them when I was in your shoes. :bighug::bighug::bighug:
 
Last edited:
Oh Suzanne, I am sorry to hear this news. You are clearly not alone here--you have so many resources from among all of the experienced people here like Wendy. You will make the right choices for you and Mr. Darcy (always loved Jane Austen!) and you will have many more wonderful years together. Hugs to you! :bighug::bighug::bighug:
 
Thank you to all of you. Your kindness is making me cry (but in a good way). So glad to know I am not alone... and that others have traveled this path before me.
 
Suzanne - you are not alone. :bighug::bighug::bighug: Darcy is still the same sweet cat he was before, he doesn't know he has acromegaly, and frankly doesn't care. But you now have an explanation for his appetite for insulin, and even better, it looks like you've been thinking about what you can do to help him. First and foremost is finding that an insulin dose that can move him, and we can help you there. At some point you may consider a switch to Levemir or at least watch injections to make sure it's not stinging him.

The IGF-1 number doesn't really relate to anything, other than over 92 is positive. Neko's was 440 at the time of her diagnosis. One member here's cat Howie was 83 in September and 532 last month. The number can vary over time and has no relation to the size of the benign pituitary tumour. Oh, and glad to see no IAA, one less complication to worry about with dosing.

A lot of acrocats are middle aged. Some are older, some younger. Pamela's Amethyst was 5 years old when she was diagnosed a little over 4 years ago. She has been on cabergoline for almost 3 years now. There is one other drug that has been used effectively in a study, call pasireotide, but I don't know of a single sole that has actually used it in real life, because the drug is more expensive than even surgery or radiation therapy.

Please ask questions. I know I had a ton of them when I was in your shoes. :bighug::bighug::bighug:

One question is: Isn't it likely that his pancreas functions normally and that it was really the pituitary tumor that made him become diabetic in the first place?

I did mention to the vet that I was considering adding some Regular insulin to the regimen and she seemed to be aware of doing this and wasn't really against it. She said it only lasts about an hour though? She seemed to feel that it could be used to prevent spikes when he eats... like to give it before a meal? I'm open to trying this to make sure I can get him feeling better.
 
One question is: Isn't it likely that his pancreas functions normally and that it was really the pituitary tumor that made him become diabetic in the first place?
Entirely possible. If a cat has been in higher numbers a really long time, their beta cells could get tired and add to the problem. But I did spot times when I could tell Neko's pancreas was at least partially working.

R typically lasts around 4 hours. We start by giving it at PS time. It can help drop the numbers a bit before the L onset to give the Lantus a better/lower number to grab onto. So yes, it helps a bit with the food bump, but also with numbers naturally going up at the end of the cycle before onset. Secondary use is to help with bounces or fur shots, but that's not what we primarily use if for. Let me ask around some people who've used it before to see if we can get someone to help. I am on west coast, so not good for the morning shot time. What time zone and time of day is shot time?
 
I'm so sorry to hear that.
I know this is stating the obvious, but maybe it helps to remember that he already had all this going on inside him before you had him tested. You are just armed with the knowledge now to be able to do something for him.
Sending best wishes to you guys :bighug:
 
Suzanne. Sorry for the diagnosis. You are certainly not alone. You now know why Darcy is hard to regulate. That is powerful knowledge. There are 4 treatment options.

1. Do nothing but give amount of Insulin needed to keep him in normal glucose range.
2. SRT depending on where you are it can range $6000-$8000+ and if travel is involved, cost of any arrangements for overnight
3. Medical- pasireotide which in the States is by now over $13,000 a month. Or cabergoline which is more affordable but may or may not achieve remission, though it can help lessen the symptoms (at least in my case)
4. Removal of the tumor

Each option has its pros and cons. Once you adjust to the diagnosis, there is much to learn on each option. You will decide the best path for Darcy.
 
[QUOTE="

R typically lasts around 4 hours. We start by giving it at PS time. It can help drop the numbers a bit before the L onset to give the Lantus a better/lower number to grab onto. . What time zone and time of day is shot time?[/QUOTE]
I usually shoot about 7 a.m. in the morning and evening, but I'm moving it closer to 6:30 a.m. and p.m. because of some evening commitments. Either way, I can make it work, but yes... I am on Eastern Standard Time in Georgia! 6:30 a.m. is in the middle of the night for you, Wendy! Do you usually give the R insulin just for the morning pre-shot? or both a.m. and p.m. My vet said something about injecting it into muscle instead of subcutaneously??? Seems like that would slow things down in terms of absorption/onset?

Do you think I should go ahead and increase him one unit tomorrow (he's been at 12 units for two days/4 cycles now) if we're going to get really aggressive with the increases? Today is just about the flattest day I've ever seen... 323, 316, 313!!! I mean... COME ON!!! FLAT... of course, today I didn't get a good later afternoon test on him because I had to take some foster kittens out to the vet and then pick up my kids from school. All, I got was a +4 so maybe it went a tiny bit lower... but it couldn't have been much. Anyway, what about tomorrow? 13 units?

I asked my vet about Lev and she was fine with it. I told her that so far he doesn't make any fuss at all with the acidic sting of Lantus and she just said... well... he's such an easygoing boy (she likes him a lot) that he doesn't want to fuss. But I don't want to hurt him even if he is a trooper. So, for now, since my friend gave me a few Lantus pens that she had which are still good... I'm going to use them at least for a while if I can. I'm at the bottom of my vial of Lantus purchased November 14.

It's funny... she said that she really didn't think that Darcy would have acromegaly since he doesn't "look" like it ... yes, he is a big boy, but he's been a big boy for a long time (I've looked at his photos from years ago and can't see a whole lot of difference). She's also done ultrasounds on him a few times now... September 29 and December 8. She said his organs were not enlarged. I hope things aren't getting worse.

She's put in for a consultation with the University of Georgia Veterinary College for an endocrinologist there. .... we'll see about that. I may need to arm myself with information about Cabergoline... since that seems about the most likely course of action for us to take, especially in the near term.
 
Oh Suzanne, I am sorry to hear this news. You are clearly not alone here--you have so many resources from among all of the experienced people here like Wendy. You will make the right choices for you and Mr. Darcy (always loved Jane Austen!) and you will have many more wonderful years together. Hugs to you! :bighug::bighug::bighug:

Your kitty is so beautiful!!
 
I am on Eastern Standard Time in Georgia! 6:30 a.m. is in the middle of the night for you, Wendy! Do you usually give the R insulin just for the morning pre-shot? or both a.m. and p.m. My vet said something about injecting it into muscle instead of subcutaneously??? Seems like that would slow things down in terms of absorption/onset?
Vets often use R to take cats sugars down in cases of emergency, like DKA for one. Their use of it might be different than we are used to it. We give it subq, which would be slower absorption. We typically start with R at AMPS and PMPS - when it makes sense to do so. There are some rules/guidelines for learning when to give/not to give. Over time and as you gather experience, you can also shoot it mid cycle. You might want to take a look at Oberon and Howie's spreadsheets as examples. Their caregivers ere giving R earlier this year, though currently not as both kitties are heading down dose scale.
Do you think I should go ahead and increase him one unit tomorrow (he's been at 12 units for two days/4 cycles now) if we're going to get really aggressive with the increases? Today is just about the flattest day I've ever seen... 323, 316, 313!!! I mean... COME ON!!! FLAT... of course, today I didn't get a good later afternoon test on him because I had to take some foster kittens out to the vet and then pick up my kids from school. All, I got was a +4 so maybe it went a tiny bit lower... but it couldn't have been much. Anyway, what about tomorrow? 13 units?
Sure, we will sometimes do fast tracking if you are only seeing nadirs above 300. Your only yellow are pretty high. So up to 13 tomorrow if you don't see anything mid or lower 200's tonight. We don't fast track all the time, but for a couple cycles, then a pause at 6 cycles to let the depot catch up. However, the fast track only works if you can a second test each and every cycle. I don't see a test for last night.

Good to hear your vet is on board with Lev as an option. No problem waiting until you are close to run out of Lantus. You can get Lev from Marks Marine, or there is someone on Supply Closet who posts it regularly. We often see kitties on Lev having a bit better duration. I personally prefer doing R with Lev, cause the R action is mostly in and out by the time the Lev onset, so you don't have to worry much about the actions overlapping. With R on board, you want to limit the drop during the duration of R to no more than 100 points, or you could set yourself up for some bouncing.
It's funny... she said that she really didn't think that Darcy would have acromegaly since he doesn't "look" like it .
I've seen papers saying that only around 35% of acrocats have clinical signs at diagnosis. Neko was part Maine Coon, but not especially large and no real other signs at diagnosis. She has some enlargement of her heart a few years in, though just on the border with normal and she was a bigger breed, that also tends to larger hearts. At the end, her liver was a bit bigger. Acrocats are ECID to signs and symptoms. It's just good to be aware of what you might see.

I'm attaching a paper that talks about a number of recent FD topics. Case #2 is an acro and talks about treatment options. Note, one of the authors is from Royal Veterinary Clinic in England, one of the very few places that does pituitary surgery. There is also a place in New York. Poke around some of the links on this post, and there are a couple more users of cabergoline there:
Cabergoline/Acro/IAA Information

Edit: still working on attaching that paper.
 
Suzanne - you are not alone. :bighug::bighug::bighug: Darcy is still the same sweet cat he was before, he doesn't know he has acromegaly, and frankly doesn't care. But you now have an explanation for his appetite for insulin, and even better, it looks like you've been thinking about what you can do to help him. First and foremost is finding that an insulin dose that can move him, and we can help you there. At some point you may consider a switch to Levemir or at least watch injections to make sure it's not stinging him.

The IGF-1 number doesn't really relate to anything, other than over 92 is positive. Neko's was 440 at the time of her diagnosis. One member here's cat Howie was 83 in September and 532 last month. The number can vary over time and has no relation to the size of the benign pituitary tumour. Oh, and glad to see no IAA, one less complication to worry about with dosing.

A lot of acrocats are middle aged. Some are older, some younger. Pamela's Amethyst was 5 years old when she was diagnosed a little over 4 years ago. She has been on cabergoline for almost 3 years now. There is one other drug that has been used effectively in a study, call pasireotide, but I don't know of a single person that has actually used it in real life, because the drug is more expensive than even surgery or radiation therapy.

Please ask questions. I know I had a ton of them when I was in your shoes. :bighug::bighug::bighug:
Suzanne, welcome to the acro family! There are so many great resources and experienced people in this forum...especially Wendy. I couldn’t do this with Howie without everyone’s help! If your kittie is getting higher in doses, please consider a switch to Levemir (order from Mark’s Marine Pharmacy in Canada). They are so great to work with. Levemir keeps Howie pretty flat...not a lot of peaks and valleys throughout the day and it doesn’t sting at all like Lantus does/can. I just started Howie on cabergonline last week and am waiting to see how it effects him. Howie was up to 55 units twice a day in mid January. But we broke his glucose toxicity and he’s back down to 38 units twice a day and probably can use another decrease. On the Acro forum, I’ve asked a ton of questions in the last month that can hopefully help you with this new diagnosis. Big hugs to you and kittie!
 
Suzanne. Sorry for the diagnosis. You are certainly not alone. You now know why Darcy is hard to regulate. That is powerful knowledge. There are 4 treatment options.

1. Do nothing but give amount of Insulin needed to keep him in normal glucose range.
2. SRT depending on where you are it can range $6000-$8000+ and if travel is involved, cost of any arrangements for overnight
3. Medical- pasireotide which in the States is by now over $13,000 a month. Or cabergoline which is more affordable but may or may not achieve remission, though it can help lessen the symptoms (at least in my case)
4. Removal of the tumor

Each option has its pros and cons. Once you adjust to the diagnosis, there is much to learn on each option. You will decide the best path for Darcy.
Thanks, Paula. I saw some of your posts on the Sugarcat group. I didn’t realize though that you had lost Olive last year. I only joined the group last summer after Darcy was diagnosed. You really fought hard for Olive!
 
Vets often use R to take cats sugars down in cases of emergency, like DKA for one. Their use of it might be different than we are used to it. We give it subq, which would be slower absorption. We typically start with R at AMPS and PMPS - when it makes sense to do so. There are some rules/guidelines for learning when to give/not to give. Over time and as you gather experience, you can also shoot it mid cycle. You might want to take a look at Oberon and Howie's spreadsheets as examples. Their caregivers ere giving R earlier this year, though currently not as both kitties are heading down dose scale.

Sure, we will sometimes do fast tracking if you are only seeing nadirs above 300. Your only yellow are pretty high. So up to 13 tomorrow if you don't see anything mid or lower 200's tonight. We don't fast track all the time, but for a couple cycles, then a pause at 6 cycles to let the depot catch up. However, the fast track only works if you can a second test each and every cycle. I don't see a test for last night.

Good to hear your vet is on board with Lev as an option. No problem waiting until you are close to run out of Lantus. You can get Lev from Marks Marine, or there is someone on Supply Closet who posts it regularly. We often see kitties on Lev having a bit better duration. I personally prefer doing R with Lev, cause the R action is mostly in and out by the time the Lev onset, so you don't have to worry much about the actions overlapping. With R on board, you want to limit the drop during the duration of R to no more than 100 points, or you could set yourself up for some bouncing.

I've seen papers saying that only around 35% of acrocats have clinical signs at diagnosis. Neko was part Maine Coon, but not especially large and no real other signs at diagnosis. She has some enlargement of her heart a few years in, though just on the border with normal and she was a bigger breed, that also tends to larger hearts. At the end, her liver was a bit bigger. Acrocats are ECID to signs and symptoms. It's just good to be aware of what you might see.

I'm attaching a paper that talks about a number of recent FD topics. Case #2 is an acro and talks about treatment options. Note, one of the authors is from Royal Veterinary Clinic in England, one of the very few places that does pituitary surgery. There is also a place in New York. Poke around some of the links on this post, and there are a couple more users of cabergoline there:
Cabergoline/Acro/IAA Information

Edit: still working on attaching that paper.
I test every night before bed, so if there isn’t a number in there, I must’ve forgotten to put it in my SS.
 
Yes, Wendy and the crew here have been absolute lifesavers ... literally. Freckles was diagnosed Acro and IAA about a year ago now. Everyday, I just look at her and she is the same lovey cat as prior to the diagnosis. I've not noticed any physical changes in her either. Cabergoline is not an option for me here as my vet nor the internist at the teaching college feel that there isn't enough evidence to support giving me a prescription for it, so all I can do is treat with insulin. I also give Freckles turmeric (Golden Paste recipe). There's evidence about turmeric helping regular diabetes but not much on helping diabetes caused by acromegaly - I figured that it isn't going to hurt her so it's worth a try and may help alleviate some other side effects of acro.

Welcome to the 'Acro Club'.
 
Gosh, I don’t know what I will do if my vet won’t prescribe the Cabergoline. I guess I will try another vet? Maybe lots of other vets? I wonder if there is a way of finding other people who have cats that are on Cabergoline and where they live. Thanks for writing. Love to you and Freckles!
 
That’s interesting about the turmeric, too. I waa not aware off its use in cats. I take it daily for myself though. I’m glad to know that it is safe for cats. Is the recipe on the FDMB?
 
That’s interesting about the turmeric, too. I waa not aware off its use in cats. I take it daily for myself though. I’m glad to know that it is safe for cats. Is the recipe on the FDMB?
Not that I'm aware of. Here is a link that has the recipe
https://www.turmericlife.com.au/pages/golden-paste

anecdotal notes are here
https://www.facebook.com/groups/415313751866609/

I haven't found one source that has a compilation of research articles for cats. It would be nice if there was a literature review article.

I'm not a vet and not encouraging anyone to try it - just my own anecdotal observations.
 
Lots of information on this original post on cabergoline, including links to papers. The South American one is the more interesting one, as posts 30 and 31 in this post show, they've now used cabergoline on over 50 acrocats. Even RVC seems to say there might be promise in cabergoline. The article in post 15 here shows cabergoline listed as an option - one of the authors of the paper is at Royal Veterinary College. The original RVC papers (the other place that has formally studied cabergoline) were not so promising, but they studied just a handful (6) cats.
 
Back
Top