Recent acro diagnosis-looking for advice

AlyssaP

New Member
Hello,

I had posted on here a few weeks ago trying to get some insight into situation with my kitty. I was recommended to get the acro test from MSU. (Just want to insert a big thank you to this community over that) My vet called me today and advised that her igf-1 levels were above 1000 which is what that they considered significant (she told me the exact number over the phone but I can't remember it now. It wasn't over 1100). Hey blood sugar is staying consistent in the 300-400 range. She's currently on 8 units of insulin twice a day. I've been testing it off and on at home but haven't done a spreadsheet or curve. She's quite resistant to letting me test it in the morning.

She advised she has never treated this before and was talking to MSU about treatment options and get back to me later this week. She had talked about two different medications that she had read would treat it, I did not get the names.

I wanted to see what recommendations others had that have dealt with the same issues just so I can get an idea for when the vet calls me back.
 
Sorry about the diagnosis, but now you have a reason for her size of dose. :bighug::bighug:Estimates are that about around 25% of diabetics have it, not all larger doses. Which means many miss the diagnosis in their cats. Oddly enough, her size of dose means you know what she's got, and now you can look at treatment. By the way, over 1000 is positive for acromegaly, any higher isn't significant. My vet also thought she hadn't seen any acros before Neko, but after working with us soon realized she had another in her practice.

Meow meow is still the same sweet kitty, she doesn't know she has acromegaly. Give her a little scritch from me.

There are several methods of treatment. I'll give you the range from most expensive to least expensive, and unfortunately most curative to least. The gold standard is hypophysectomy, which is a surgery to remove the pituitary gland. They go in from the upper palate. You only want to go to a surgeon with experience in this surgery. In North America I think there are only a couple places, New York and I think Washington State U does it, maybe a spot in LA too. There are some risks to surgery too. We've seen a few people here do that treatment. At one point a donor had given money to the surgeon in New York to help pay for surgeries and a couple people took advantage of it. Both of those cats quickly went off of insulin. We've seen a couple people go to WSU, one person with two cats! in her house. Both cats had complications fron the pituitary surgery and had to subsequently have radiation therapy. But both survived a long while after the surgery.

Second possible treatment is stereotactic radiation therapy. It is available in a lot more places in North America. That's what Neko had. It really improved her quality of life for over 4 years and was the only treatment available at the time. There is a variation on this called Cyberknife and we've seen one or two cats do that. It is even more precise in the radiation beams, and correspondingly more expensive with less places offering. Results, cats going into remission, seem to be better than regular SRT. Both this and surgery above likely involve travel, but with SRT being more available, might be a shorter trip.

Next option is cabergoline, a medication given once a day, or some cats do once every two days. It is by far the cheapest option. Most people get it compounded into a liquid. Results are pretty good, most cats insulin dose goes down and some of the acro symptoms are reduced. We've also seen cats here live 4-5 years on it. How long it takes a cat to react to cabergoline varies a lot, but we have seen a few go into diabetic remission. It works best in cats with small tumours. Search around this forum, you'll see a number of posts with cabergoline in the title.

The last option is not to treat the acromegaly, but rather to just give insulin and manage the side effects. This may or may not be the cheapest option. Reduced insulin dose with any of the above treatments means lower costs. It used to be a more significant factor before insulin costs dropped. We've seen one cat not treated eventually go off of insulin, but not before getting up to a dose of 55 units. Typically cats don't survive as long without treatment.

Your vet may also talk to you about the medication pasireotide. There has been a small test done in England on it and written up in a paper. Results were fairly good, but no one here has tried it, The medication is WAAAAAY too expensive. Years ago I costed cat sized doses with a vet helping me, and it was around $15K a year. You could pay for any of the other options.

This recent article iCatCare 2025 consensus guidelines on the diagnosis and management of diabetes mellitus in cats has a good section on acromegaly (technically called hypersomatotropism, but acromegaly is less of a mouthful), starting page 5. It also has a comparison chart for treatments. It is authored by the folks at Royal Vet Clinic, who are the gold standard place for the pituitary surgery. They only did a small trial on cabergoline (5 cats). While they were doing that trial, the first cat here to try cabergoline went into diabetic remission - in 10 days! There is a research group in South America who has done a much larger study on cats, with better results.

If you want any more information on any of these options, let me know. We have papers you can read, and also pass onto your vet. I'm glad the vet is wiling to work with you and looking at learning about the condition.
 
Sorry about the diagnosis, but now you have a reason for her size of dose. :bighug::bighug:Estimates are that about around 25% of diabetics have it, not all larger doses. Which means many miss the diagnosis in their cats. Oddly enough, her size of dose means you know what she's got, and now you can look at treatment. By the way, over 1000 is positive for acromegaly, any higher isn't significant. My vet also thought she hadn't seen any acros before Neko, but after working with us soon realized she had another in her practice.

Meow meow is still the same sweet kitty, she doesn't know she has acromegaly. Give her a little scritch from me.

There are several methods of treatment. I'll give you the range from most expensive to least expensive, and unfortunately most curative to least. The gold standard is hypophysectomy, which is a surgery to remove the pituitary gland. They go in from the upper palate. You only want to go to a surgeon with experience in this surgery. In North America I think there are only a couple places, New York and I think Washington State U does it, maybe a spot in LA too. There are some risks to surgery too. We've seen a few people here do that treatment. At one point a donor had given money to the surgeon in New York to help pay for surgeries and a couple people took advantage of it. Both of those cats quickly went off of insulin. We've seen a couple people go to WSU, one person with two cats! in her house. Both cats had complications fron the pituitary surgery and had to subsequently have radiation therapy. But both survived a long while after the surgery.

Second possible treatment is stereotactic radiation therapy. It is available in a lot more places in North America. That's what Neko had. It really improved her quality of life for over 4 years and was the only treatment available at the time. There is a variation on this called Cyberknife and we've seen one or two cats do that. It is even more precise in the radiation beams, and correspondingly more expensive with less places offering. Results, cats going into remission, seem to be better than regular SRT. Both this and surgery above likely involve travel, but with SRT being more available, might be a shorter trip.

Next option is cabergoline, a medication given once a day, or some cats do once every two days. It is by far the cheapest option. Most people get it compounded into a liquid. Results are pretty good, most cats insulin dose goes down and some of the acro symptoms are reduced. We've also seen cats here live 4-5 years on it. How long it takes a cat to react to cabergoline varies a lot, but we have seen a few go into diabetic remission. It works best in cats with small tumours. Search around this forum, you'll see a number of posts with cabergoline in the title.

The last option is not to treat the acromegaly, but rather to just give insulin and manage the side effects. This may or may not be the cheapest option. Reduced insulin dose with any of the above treatments means lower costs. It used to be a more significant factor before insulin costs dropped. We've seen one cat not treated eventually go off of insulin, but not before getting up to a dose of 55 units. Typically cats don't survive as long without treatment.

Your vet may also talk to you about the medication pasireotide. There has been a small test done in England on it and written up in a paper. Results were fairly good, but no one here has tried it, The medication is WAAAAAY too expensive. Years ago I costed cat sized doses with a vet helping me, and it was around $15K a year. You could pay for any of the other options.

This recent article iCatCare 2025 consensus guidelines on the diagnosis and management of diabetes mellitus in cats has a good section on acromegaly (technically called hypersomatotropism, but acromegaly is less of a mouthful), starting page 5. It also has a comparison chart for treatments. It is authored by the folks at Royal Vet Clinic, who are the gold standard place for the pituitary surgery. They only did a small trial on cabergoline (5 cats). While they were doing that trial, the first cat here to try cabergoline went into diabetic remission - in 10 days! There is a research group in South America who has done a much larger study on cats, with better results.

If you want any more information on any of these options, let me know. We have papers you can read, and also pass onto your vet. I'm glad the vet is wiling to work with you and looking at learning about the condition.
Thank you so much. This forum has been amazing for helping me navigate this.

The vet had not mentioned surgery, only two medications so I'm assuming she's more than likely taking about the cabergoline and the pasierotide. She did say one way newer and really expensive.

Unfortunately I don't think surgery would be a viable option while I'm in the USA I'm in Ohio and a trip like that would probably not be financially possible. I will bring up the radiation therapy to her. I'm not to far from Columbus and I'm thinking I could possibly find someone that does it there. I'm going to look over the site you linked and go from there. Thank you again for all the information.
 
Just dropping by to share information. Sorry about the diagnosis but it gives you a pathway to follow. I lived with two acro-kitties (hypersomatatropic: they actually did not show outward signs so the latter term more accurate [see link that Wendy shared), both of whom had hypophysectomy at Washington State University Veterinary Teaching Hospital (Dr Tina Owen). They were brothers and Blue was diagosed in 2017 and Eddie in 2020. Following hypophysectomy they each had SRT at different times and with Blue, he went into remission following SRT. Eddie also took Cabergoline for awhile and it made a difference in his insulin dose Their stories are long and thanks to all that was available to them, including this great FDMB community, so were their lives.

All good thoughts for Meow meow. You've got this. 🥰
 
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