Acromegaly and resultant diabetes cured by pituitary removal

John Irene and TITAN

John Irene and TITAN

Member Since 2018
I am new here. I want to read posts about IAA but when I search, the search term is too short and I get no results. TITAN is currently on 8 units twice a day, and every time the dose is increased, the BG drops but only to about 24 and only for a day or two. Any suggestion about finding IAA posts would be welcomed

EDIT this was our first post before we knew how things worked. We are extremely grateful for the welcome and responses we received. In the event it wasn't IAA we were dealing with.
 
Last edited:
Hello! My buddy Lou was diagnosed with IAA only on July 2, 2018. My thread with the diagnosis and some basic information is located HERE. Within that post, Wendy&Neko provided me with the names of other IAA only members so I could review their spreadsheets and also a post HERE with a lot of other links/information about IAA. It's a lot of information, but hopefully they'll help you! :)
 
Have you had the blood tests done for insulin auto antibodies? Or for acromegaly? We recommend getting both the IAA and IGF-1 tests done when kitty gets over six units. It is possible for a cat to have both high dose conditions, as did my cat. She also exhibited the action to an increase where she would show initial better numbers, then go back to higher numbers. I called it the dose going stale. :rolleyes:

Feel free to keep asking questions, we'll try to help.

What insulin is Titan in, and what food is he eating?
 
Last edited:
Wendy&Neko said:
Have you had the blood tests done for insulin auto antibodies? Or for acromegaly? We recommend getting both the IAA and IGF-1 tests done when kitty gets over six units. It is possible for a cat to have both high dose conditions, as did my cat. She also exhibited the action to an increase where she would show initial better numbers, then go back to higher numbers. I called it the dose going stale. :rolleyes:

Feel free to keep asking questions, we'll try to help.

What insulin is Titan in, and what food is he eating?
Click to expand...
Thanks both for response. We managed to get both IAA and IGF-1 done. The IGF-1 came back positive yesterday and IAA is still awaited.. We are trying to feed zero CHO, and using prozinc (after a couple weeks on caninsulin ). Going stale is surely the IAA response? We Also had a positive Flp1 two days ago
 
Last edited:
I thought the same blood sample delivered both IGF-1 and IAA. Anyhow, can you please tell us the numbers for your kitteh?

Sorry to hear about the FIP1 positive diagnosis for Titan.
 
Sorry to hear about the positive test results. :bighug: Most of the people getting the MSU tests done lately are reporting that the IAA results is coming in after the IGF-1 result.

For food, it doesn't have to be zero CHO, low carb under 10% carbs is good.

The dose "going stale" can also result from the pituitary tumour ramping out it's growth hormone output. It's easier to tell which it is if you have a spreadsheet or other mechanims to show your blood test values.
 
We're going for zero CHO because TITAN is still a long way from reasonable numbers. We get average results around this morning's figure of 30 / 540 and would be happy just to get to 20 / 360 . We have kept a spreadsheet since diagnosis on 6 July, and have reentered all data onto Royal Vet. College's App. But would be happy to do it again in a different format if it helps to get advice from you guys. Can you tell me where you store your SSs? On the forum site or individual cloud services?
How can you distinguish from a spreadsheet between extra growth hormone output, and extra antibody output?
TITAN is starving hungry and went out in the rain last night to catch a mouse.
 
Here is the information on the common spreadsheet format used here:

FDMB Spreadsheet Instructions:
  • Please set up a Google Spreadsheet as soon as possible. Always keep spreadsheets up-to-date! Valuable time may be lost looking for information when a spreadsheet is not up to the minute.
  • If you have not been able to transition your kitty off of DRY food yet, please note it on your spreadsheet and in your signature. A dry food diet will often require higher doses of insulin to bring numbers down. Having this information plainly visible will help us help you.
Understanding the Spreadsheet/Grid
 
We have loaded up a spreadsheet, and included a link to the folder in my signature. Can anybody tell me if it works? Titans IGF-1 score was off the scale at over 2000 ng per litre. They have lost the sample for the IAA test. We have an appointment in mainland England on 23rd August at RVC for the surgery to remove the tumour. We live in the island of Jersey so we have to fly, and get a pilot from the aero club to give us a lift.
Before that we have to fly to the nearby island of Guernsey to get a CT scan to confirm the tumour, probably Tuesday, trying to find a pilot as I write.
Should we get another sample and get the IAA test done anyway?
The BG tests are still over 30 / 540. The vets (thats another story) are frightened to tell us we can increase his dose although we would like to. What do YOU think?
 
Michigan State University in the US is the only one doing the IAA tests. I wouldn't bother getting it tested at this point. If the tumour is removed, the IAA may just resolve itself as hopefully you'll no longer need to inject insulin. Lucky you on having the option to go to RVC, even if it is rather complicated travel. Do let us know how it goes. We have one person here @Amanda & Shmee getting the surgery done in New York shortly. I am sure she'd love to hear the details, as would I. I live in Canada, we have no one here performing the surgery, :(

I get an error message when I try to open the spreadsheet. It says "URL can't be shown".
 
Welcome! You are in the right place, Wendy and many others have helped me tremendously.
What is your name? I am so happy you are able to get the surgery done, it is not some common here as it will cast us anywhere from $16,000-$20,000. The only reason I am getting it done is because there is donor money available in NYC. I cannot open your SS either.
 
I don't think he's been on insulin long enough to run the IAA. He needs be on insulin 76 days I believe or its a false reading.

My lady is on 8.5 units. Was on 9 and possible it will go back and even increase. They need what they need. Some kitties have been over 50 units.

I can't open ss either. If your following either of the protocols posted on the forum, you would follow the guidelines for increasing or decreasing. It's funny my vet with my first cat said he couldn't have more than 5 units. With my current kitty since I home test the vet is comfortable with me increasing if she needs it. Now the internal medicine Dr was against her getting the 6 units when he saw her. Thank goodness he only sees her for ultrasound.
 
Last edited:
Olive & Paula said:
I don't think he's been on insulin long enough to run the IAA. He needs be on insulin 76 days I believe or its a false reading.
Click to expand...
I don't think you'll get a false reading for IAA. There has been a study by RVC that showed that 1/3 of the acro cats tested before 73 days would be false negative.

8 units is not a particularly high dose of insulin for an acrocat. My girl got up to 8.75 units, but we've had some kitties need almost 100 units per shot. But that was on a longer lasting insulin like Lantus and Levemir. We don't see many high dose cats on Prozinc.
 
We are John and Irene, and TITAN. the spreadsheet link has been re-attempted. please tell us if it works. We are so envious of everybody's purple, yellow etc results. we are concerned to keep TITAN going until (now rescheduled) 29 August 2018. Should we bump up his shots to 10 units twice daily, or how about some shorter acting insulin?
 
The spreadsheet is now working. Yes, Titan is getting a lot of insulin. You are indeed lucky to have the hypophysectomy option for a good price in the UK.

At this point, Titan is under-dosed. There is no quick solution. I would do 10% bumps and hold them for 6 doses. If you raise the dose too fast, then you could create a hypo.

Leo was at 36 units/day when I got him treated with radiation SRT in Sept 2016. Now he is at 5 units/day, and some of that is to overcome the prednisolone effects.
 
How interesting to live on Jersey Island. A little bit of UK and a little of France. Plus access to some nice beaches.
 
Thanks for that, Jeff. Thanks also for all the excellent graphs and notes which I have studied. We have increased from 8 to 9 units. He is still over 30 / 540, and very quiet and unhappy looking. It's very tempting to increase more rapidly. I know hypos are to be avoided; I have been a type 1 diabetic myself for about 45 years, and have had a few extreme hypos in that time. I remember them as being very frightening, and wouldn't want to add that to Titans troubles.
 
Good luck with the increase . I want to stress the importance of getting a test in each and every night cycle if you can, perhaps just before bed. Many cats go lower at night. My Neko went months going lower at night(and earning reductions), then bouncing up during the day. If I only had daytime tests, I would have though she needed more insulin, but in fact she needed less.
 
Yes, humans certainly need less insulin overnight than during the day, not only because of food, but also the background metabolism. We had TITAN on 6 units AM and 3 units PM for a while. But now i am wondering whether cats being more nocturnal than humans, might need to be dosed more evenly. Did you ever get NEKO under any kind of reasonable control before the SRT?
 
Neko earned her first reduction just days before we hit the road for the three day drive for SRT. So I finally hit a good dose, but her numbers were still all over the place. Best thing I did to get her more even was to switch to Levemir, but hopefully you are going to see more immediate results with the surgery.

Lantus/Levemir is dosed differently than Prozinc. On the Lantus/Lev forum, the dosing methods we use recommend the same dose AM and PM to stabilize the depot.
 
Just looked at Titan's chart again. You are doing a great job keeping it updated, and dosing. I would keep up the 6-dose protocol and 10% increases until you see some results. The high numbers are unhealthy.

New chart - Tab 3 "SRT Summary" shows the updated chart. With hypophysectomy, the RVC predicted better results than SRT though.

Leo's summary:
- 2016 approaching a bouncy regulation on Prozinc
- late 2016 switched to Levemir and did not have regulation
- Sept 2016 SRT
- Note I work full time, and sometimes 50-60 hours. Better records and better regulation would have been easier if not working.

If all goes well, you end up with this 2 years later.
Little Dude and Leo - best buds 08-12-2018c.jpg
 
We have had a further reply from Ruth at RVC in response to our questions about raising the dose. They seem to be against it. After yesterday's raise, today's results are pretty flat and high. We are going to maintain this dose for a few days. Lovely picture of Leo and Little Dude!
 
To me this reads that it would be OK to increase, but it may not be enough to get him into good numbers. Just so you know, we have seen some very well regulated untreated acrocats on higher doses, that were using either Lantus or a Levemir. RVC may not have seen that yet, it really depends on home testing which not all caregivers do. She may also be thinking that it's not that long until the surgery, and you are unlikely to get him regulated in that period of time. I think it's your call, more insulin won't hurt, might help a bit.
 
Titan will be admitted on Tuesday 8/28/2018. That is about 2 full weeks away. I agree with Wendy. Giving Titan more insulin will only help him. Those black numbers are real bad - glucose toxicity.

Sure, you probably won't have him regulated in 2 weeks. But you might give his kidneys a little break from filtering out all the glucose.
 
Thanks to Wendy and Jeff for good advice. Cannot tell you how comforting it is to deal with people who know what they are talking about and say what they think. Maybe no increase today because it's supposed to be a CT scan day. The light aeroplane flight has just been cancelled because of poor visibility at both airports. So we're going by car on the fast ferry, departing in 3 hours, hopefully return tomorrow. Titan can stay at the vets overnight, . Results can be sent by email to RVC and the scan costs around GBP1000. RVC can make a decision about operability and see the location of the gland/tumour from the email. If it's anything like the optical CT scans that I send to my eye surgeon in London, it's like a few shortish videos of the slices through the tissue, which the reviewer can pause and study at will. Maybe Dr McCue in NYC could do that too.
 
No problem. I hope all goes well with the ferry ride, and the scan. The scan sounds pretty expensive.

Leo has been an Acro-cat since 2016, but he got SRT, so most of the Acro is gone. And just this week after being 3 years diabetic, I have him as close to being regulated as a bouncy kiteh can be.
 
The trip to Guernsey vets went well, titan was very good. We got the scan results but still no decision as to whether he can be operated upon , because our local vet did not pass on the scan results to the RVC until late Friday after we chased them
upload_2018-8-18_14-21-55.png
The pituitary gland is about dead centre of this view, which is a slice taken vertically, ear to ear. I shall post a video of the whole scan here. The gland / tumour can be seen about 6.5 seconds into the video. Titans BG just seconds ago was 34.3 !!! his dose is 10 twice a day. We will try to do a BG during the night tonight.
We are starting to worry that loading him up with exogenous insulin might trigger Insulin Antibodies, and we are starting to research (google!) the difference between Insulin antibodies and Insulin auto antibodies. Thought the latter was resistance to the cat's own insulin. Can anyone explain this in simple terms?
 
Thanks for posting the results. His BG is so high, that 34.3 - I thought that was a U.S. value. These black numbers indicate glucose toxicity. The upcoming surgery will be a good relief for that.
 
John Irene and TITAN said:
We are starting to worry that loading him up with exogenous insulin might trigger Insulin Antibodies, and we are starting to research (google!) the difference between Insulin antibodies and Insulin auto antibodies. Thought the latter was resistance to the cat's own insulin. Can anyone explain this in simple terms?
Click to expand...
Here is an explanation of Insuiln Auto Antibodies. Sorry, the link the What We Know Sticky is broken but this is what it used to point to. Basically IAA is like the body's defense system to foreign bodies, ie. injected insulin. All cats have a minor amount of this, but for most it's very low levels. Neko had 52% IAA - she had it from the start, increasing her insulin does did not make it worse. In fact, eventually you inject enough exogenous insulin and you will overcome the antibodies.

Those blacks are really hard on the system. I would increase to 11 units tomorrow. If you can get at least 2 tests per cycle, ie. the preshot and one other, and you don't see anything below 200 (11.1), I would keep increasing every 6 cycles.

I hope you hear from RVC soon.
 
RVC have confirmed they think TITAN is suitable for the surgery. We have been back for a second sample for a further IAA test, and a full set of bloods to see what damage these sky high BGs are doing. Only 27 / 486 this morning when he came in!
 
That is great news that Titan is now confirmed for surgery. Like Wendy said, those blacks are horrible for your kitteh. I hope you can get a breakthru soon. If not, then the surgery is coming up to resolve it.
 
Good to know you can now proceed with the surgery. That CT scan condirmation was a relief to me too.

Any chance Titan is finding a bowl of dog or cat food left out be a neighbour? Wouldn't be the first diabetic cat to do so. Especially with the acro hunger.

I think you are fine to go to 11 units now, provided it's not a neighbourhood buffet contributing to the numbers.
 
Thanks Wendy. I think it's unlikely that he is dining out unless it's on wild food. He did bring In a rabbit last week. Our only close neighbours have cats but leave no food out. Their cats would not allow ours in through their cat flap.
You mentioned on 10 Aug a study by RVC about false negatives in early diagnosis of Acro; difficult to understand that wrt IGF-1, but possible with IAA. Anyway would like to read it, can you point us in the right direction?
We are very happy with the speed of diagnosis of TITAN, thanks largely to FDMB.
It might have been quicker if vets routinely encouraged home testing
 
Last edited:
Not a paper, but a video on the RVC Diabetes Remission Clinic FB page. Here is the link. We do have at least one example here of a kitty whose IAA came in later. Doodles looked like a normal diabetic kitty, well regulated, when he started getting heart problems. His dose skyrocketed to double digits and he was diagnosed with IAA. Very little is known about IAA. There have only been a couple of research papers on IAA, on very small samples sizes of cats, and with contradictory results. There doesn't seem to be anyone actively studying it in felines now.

Titan may or may not have IAA, it could just be his acro tumour growing causing the increasing needs for more insulin.
 
Thanks, watched the video. Difficult to follow as she spoke so fast, but will try to get the gist with a few repeats .
Titans increased dose was going well. He was down to about 20 /360 at 0200 last night BUT this morning was the highest ever at 35.3/ 630 !! Surgery on Wednesday can't come too soon. We don't think it's a bounce but not sure. Maybe we should switch to 3 shots a day? There was about 14 hours between last nights pm shot and this mornings shot. Probably not going to switch insulin type at this point .
 
It's possible for cats to bounce if they see low pinks or yellows, if they are used to higher numbers. Don't worry about being the highest number to date. Meters can by law vary as much as 20%, at least in North America, and at those higher numbers that's quite a range. My meter just said "Hi" after 600, so I didn't have to care about exact numbers. And you are probably correct that the time between shots was also a factor.

I would stick with 2 shots a day for now. At this point you probably have enough on your mind getting things ready to travel for the surgery. There isn't much expertise around using 3 shots a day and Prozinc. It's been done, but quite a while ago. If things weren't going to change for the better soon (positive thinking), I would have some other ideas for you to consider.
 
Yes, very good progress. Getting out of the blacks - I bet Titan feels a bit of relief.
 
Yes he was better. But we backed off last night. And lost some ground. Our flight is now tomorrow lunch time because of weather, and we just want to get him there safely. Pilot wants cash in hand on arrival ... I feel like a smuggler! Consult Tuesday and hopefully op. on Wednesday. Thinking of Amanda tonight.
 
Titan is a good boy. Healing vines for Titan and you on his upcoming surgery. This will be the start of his newly renewed Acro-free life.:bighug::bighug::bighug:
 
Thanks to all. Wendy... the carrier was one we borrowed from Tiz, the great vet nurse at home, who also came in to feed our cats and inject TITAN when we had a trip away in the early days. We broke a bit off it in Guernsey , and were able to buy a replacement from Amazon. It's quite heavy but has the advantage that you can put in food and water without risking escape.
Not looking forward to seeing his head shaved!!!
 
I wouldn't be upset about that question. That is common for all animal surgery. Sounds like good progress leading up to the big day for Titan!

The fees sound pretty high. I really hope Titan does well in surgery.
 
You must log in or register to reply here.
Back
Top