haven't posted for a while-looks like acromegaly

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katieroc

katieroc

Member Since 2014
Hello all. I haven't posted for many weeks. I dropped off frankly. I was on total overload. After constantly raising the daily dosage, we had the IGF-1 test some and Rui' s results came back > 521. So it looks like we're dealing with acromegaly. I made a appointment with an internist at Red Bank Veterinary Hospital for a consultation. I'm in central NJ. Also, emailed U Penn to see if we can have Rui seen there as well. I don't know what next steps are. I'm really quite devastated. Right now Rui is on 8.5 u twice daily and no signs of his BG anywhere normal. I haven't updated the ss but last night 464. This am 382. Thankfully he's been ketone neg still far. So SRT? Surgery if that's even a option? IDK. I'm a a roller coaster of emotions right now.

I wish you all a peaceful and happy holiday. I hope all of your kitties are doing well.

Susan
 
Post in the Lantus/Levemir forum with the topic Acromegaly to get the attention of those who have dealt with it
You continue following the Tight Regulation protocol as closely as you can... and breathe!
Increases may be done after 4 cycles if nadirs are still high.
Increase amounts may 0.5 units at a time for high nadirs.
You may need to use supplemental short-acting R insulin to cover the period when the insulin is wearing off or not yet in effect.
Because Lantus has an acidic pH, you may want to switch to Levemir to avoid stinging.
 
Hi susan! Don't sweat - there are many of us who have dealt with acromegaly and can help you. BJM is right - as far as I know everyone with a high dose cat is posting on the Lantus/Lev forum. I'll have to do some looking to find the links that give some info, but really, you're not alone. We can help you. 8.5u is not that big at all. Punkin got up to 15.5u before I had him treated at Colorado State University; Suzanne/Cobb got up to 31u before his insulin autoantibodies broke through and he is now down to less than 10units per shot.

Did you get his blood checked for iaa (insulin autoantibodies) at the same time? I see on his ss that you were going to check for Cushing's - was that negative?

With the holidays and the new board things might be sketchy for a few days, but i'll keep checking on you and I know Wendy will as well. Do you have any direct questions? If you can get his ss up to date I'll be happy to help you with dosing strategies. When you have a plan it takes away some of the fear - at least it did for me. You'll get him into better numbers with some help - really.

Big hugs, julie
 
Hi Susan -

Sorry you got the results that pretty much say Acromegaly (I heard "it's not a slam dunk" more than I can count!)... but you are not alone, and it's best to know the "devil you're fighting". Knowing your opponent and what to expect is more than half the battle. One of our acro kitties had their kitty treated at Red Banks - the vet there trained at CSU as well. Grayson and I went to CSU back in July 2012, and I would definitely do it again. After "swimming in a sea of pinks and reds" for 4 months, we got the dx of IAA+ and IGF-1+. We fought the resistance aggressively and climbed up to 50u Levemir and 3uR at our max, before the insulin resistance broke through. Then there was also his appetite - ravenous! (FEED THE BEAST!) At breakthrough, which I attribute to SRT, the appy returned to more normal as well. His dose reduced down to .5u... and I was certain we were on the way to OTJ, when he was diagnosed with another unrelated condition which ultimately we could not conquer. Please ask any questions you have and we can help you. Just like the FD dx, it's overwhelming at first, but it IS and can be manageable, with or without treatment.
 
Hi Susan, I will get you some more info in a day or two, but just know there are many who can help you and sweet Rui here. Red Bank is one of the few places in the US that does radiation therapy for acromegaly so you will be in the hands of knowledgeable people there, whether or not you decide to have treatment there. Some people just manage the disease with the insulin that their kitty needs. Getting the diagnosis does help you know what you are dealing with, as Lu says.
 
Thank you all so much for your responses and words of encouragement. It is a comfort to know we are not alone and other kitties (and those who love them!) have gotten better. Rui is ravenous! I feed him a mix of Purina DM, FF Classic and Tiki Cat (he switches on and off loving Tiki and hating it, depending on the day). I'm not quite sure how I should feed him in light of this new challenge-acromegaly. More or try to limit the amount of food? Any advice on that is welcome. He has lost some weight. About 2 lbs since diagnosis. He now weighs in a 14 lbs. He did not have testing done for Cushing's since the internist my vet was consulting with advised it would be more beneficial to test for acromegaly. We didn't have the IAA done (wasn't mentioned to us) at the same time as the IGF. Today we go to Red Bank. I'm assuming they will suggest diagnostic imaging to see what's what on the pituitary. I have been reading up on acromegaly and from what I've seen SRT is the most promising. My vet did tell me that an animal hospital in Yonkers, NY does SRT along with surgery. Oh, yes the vet said we may switch over to Levemir once the Lantus is finished and also talked about the 70/30 insulin. I have to talk to the vet at Red Bank about that today. **I have noticed facial changes (am I imaging it?) and his breathing is noisy at times and he snores terribly!

To Lu--I'm so sorry you lost Grayson after fighting so hard with the diabetes and acromegaly. He was blessed to have you.
 
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