New to this forum

Hi All,
Firstly I would like to say I'm so glad I found somewhere where people have actually heard of Acromegaly.... there's really not much out there.
Our story is pretty fast as this has all happened in a matter of weeks really.

Initially about 6 months ago, Bod starting sticking his tounge out, we thought it was funny at first as it made him look really dopey, after a couple of weeks though decided to take him to the vets thinking his teeth needed cleaning. Vet checked him out, said nothing was wrong with him and not to worry, so we didn't.

2 months ago he got worms and lost some weight, we wormed him but he continued to lose weight. Went to the vets who checked him and gave him some high dose worming tablets. These sent him really odd personality-wise and the weight then really started coming off and the water intake dramatically increased.
In the space of 3 weeks he went from 18 pounds in weight down to 7 and was drinking 2 litres of water per day!!!
First the vets ran tests on his thyroid which came back normal but his glucose levels were so high the reader couldn't even register a figure so we were diagnosed with diabetes and onto 2 units of caninsulin twice a day.
Every 3 days we were back at the vets with no improvement and the dosage creeping up each time so they took him in for a glucose curve test.
His curve was completely upside down, low in the morning rather than high and spiking when the insulin went in. At some points he was looking like a non-diabetic cat with the readings. Luckily for us our vet had seen acromegaly 20 years previously and asked about the tounge sticking out...was it normal for him?? the problem for us was the usual things that stand out apparently for acrocats is paws growing, head growing etc. Bodmin is a maine coon so already has these naturally, he is 4.5 foot long!!
At this point he ran scans and tests on the pancreas. Pancreas was normal, liver was far too large so yet another test (ILG-1 I think it was called) this came back with the results that he is in fact an acrocat.
Since then I have taken Bod for an MRI which has been the biggest low point for me. My fear was at this point we have spent over £2.5k, an operation was going to be costly and I was worried could we afford it...I always kept in my head that we could help him.
The results of the MRI at first sounded promising.....liver is very large but his heart is fine, his kidneys are fine (in fact one is slightly on the small size) the problem was the tumour itself. It is large, it has a necrotic centre as it ran out of blood supply in one area. My vets gut feeling is that it's inoperable. The results have been sent to the major animal hospital in Liverpool and to a specialist in Cambridge for second opinions but really I think we are left with only one option...to manage this out and make sure Bodmin maintains a great quality of life whilst he is with us. Thats the least he deserves after the 8 years of love and happiness he's given us.

We are now on 6 units twice a day but my vet thinks we'll end up on at least 15 just to try to manage the diabetes.

He looks like a rescue cat at the moment which is heart-breaking, he's constantly hungry and he's loss big patches of his fur and I am really out of my depth here.
My husband has a phobia of needles so all the care is falling on my shoulders which is tiring when I'm working full time, triple-jobbing and have a family.

I could really do with some advice from people that have experience of what to watch out for that might be a problem. My vet is lovely but he only knows text book info.

Bronwen & Bodmin

 

Hello & Welcome - lots of good people & advice here. Lanky & I are new at this ACRO stuff & are still in the stages of determining our treatment options. Others will be coming along soon that have experience that can help you. I'll be sure to bump your post along as I know traffic is down today as we celebrate the 4th of July Independence Day in the States.

Bod sounds like a wonderful kitty. Be sure to start reading the "sticky" notes on ACRO at the top of this forum page. It will be information overload but just read & ask lots of questions. People with start asking you about what insulin you use, if you home test for blood glucose (BG) levels (if not, that's something you can start working on by purchasing a human meter & testing strips - search the index as there is a video on how to prick the ear for a BG, & you will want to shop around for reasonably priced testing strips & corresponding meter), other medical issues, etc. Also, you will want to start a BG spreadsheet (SS) in Google Docs - again there is guidance on how to do this-set up google account, get the SS template, & using it. You will also want to upload a picture of your sweetheart as we all come to love and care for these kitties.

This is probably more than enough to begin. Just start doing stuff asking questions and more and more help and advise to start showing up. Go look at Lanly's SS & Profile to get some idea. I'll be checking back on you too.

Take care,
Susan

 

I forgot to mention something: I do a way-more-than-average-amount of BG testing so don't be put off by it. I do it because I want to know more, I am home, so far my expenses (WalMart ReliOn $12 meter & $20 per box of testing strips) are manageable and probably most importantly -- Lanky is VERY cooperative & easy going. He just wants me to help him get better. Most folks test before each shot - AMPS (AM pre shot BG) and PMPS (PM pre shot BG) and then 1-3 during the 12-hour insulin cycle unless the numbers go too low necessitating more testing + feeding to prevent hypo conditions of too much insulin & too little body glucose.

Oh yes, another important factor: Kitty needs a low carb diet of canned food only. No kibble, canned food only in the range of 0 to 4% (or so) of the calories coming from carbohydrates. Let us know what you are feeding & we can begin to get you help on proper diet, etc. Some kitties show significant changes in insulin needs based on diet. There is lots of information (lists like Binky's) on the FDMB about food brands/varieties, data on content and the like.

 

Welcome Bronwen and Brodmin,

We have a sister site at www.catacromegaly.com -- register there also and post. Our UK acro-moms tend to be more active there for now. (activity waxes and wanes a bit)

My acrocat Norton had brain tumor symptoms like walking in circles. Steroids helped reduce inflammation and reduced the circling -- he definitely felt better with a daily 5mg dose of Prednosolone.

The most effective treatment that we have seen recently is Stereotactic Radiation. Colorado State Univ has the only machine dedicated for veterinary use, and last year, they did a study treating feline acromegaly. Several cats/people from here participated with good results, and some others have gone after the study was over (paying full price for the treatment).

Learning to test blood sugar at home will help a lot -- because the primary thing that will help him feel better is giving him enough insulin to properly use his food. Feed him as much as he wants -- with inadequate insulin, he is going to be extremely hungry until the dose gets up high enough.

Also, the tumor output fluctuates over time -- some acrocats have wildly changing doses, and one, Fletcher, has gone OTJ (off the juice) several times.

So - choose a human meter that:
has test strips that you can afford
needs a tiny amount of blood (0.3 - 0.5 microliter of blood)
has "sipping action strips" or is "approved for alternate site testing" (ends up meaning the same thing)

 

Hi there! Glad you found us on both the sites. Hope the UK people will chime in soon (as Phoebe mentioned, they'll probably find you on the catacro site).

It's funny - another acro-kitty showed up about a month ago, also with an enlarged tongue. I think it's "eliseandpony", but she hasn't posted over in the Acro section yet.

It sounds like your vet is on top of things! So many of us have to fight and fight to get the IGF-1 test and your vet actually recommended it! It sounds like you're on Caninsulin. Most of the US people use Levemir (detemir), along with Humulin R when necessary. I've never used Caninsulin, so I can't compare them, but our Canadian mama has (Gayle & Shadoe & Oliver).

It sounds like you are not hometesting. I would really recommend that you try. For whatever reason, vets are just now coming on-board with hometesting. It's very easy and really helps you manage the diabetes part. Most of us have links in our signature that includes a spreadsheet. The spreadsheets are also helpful to look at when making dosing decisions or to simply give you hope when you're hopeless (Fletcher keeps going on and off insulin!).

Have you talked to the Royal Veterinary Clinic (Hospital?). They seem to do much of the European research in acromegaly. I'm not sure what treatments they offer, of if they might have a drug trial. I have heard that regular surgery is not worth it - too hard to do on a kitty. The SRS (stereotactic radiation surgery) worked wonders for Boo - just 14 weeks and she was off insulin. It's performed by a very special radiation machine. She was treated almost exactly a year ago.

Anyway, welcome. I'm sorry we didn't see you on Facebook, but we see you now and people will be happy to share what they know. I saw the FB picture, and your baby is awfully handsome. He has a Canadian Coon-brother named Milo (the cat with the beautiful eyes on FB), who was also treated with SRS.

 

hi again!
I just replied over on the acro board, but i'll paste it here so the others know what I said.
From what I have heard, Vetsulin (same as Caninsulin) has lost its FDA approval and vets have been told not to rx to new clients. I would imagine it's not being manufactured or won't be soon.
Another with an acro already mentioned, Elise and Pony, are trying to find more Vetsulin, but is having quite alot of trouble as there is none or very little to be had.
I am not sure but as it's a faster acting insulin when compared to Lantus and Levemir, it may not be very suitable for use in treating an acro cat. I sure don't know that for a certainty, but that's my impression.

As for home testing, I LOVE it! if I did not test as frequently as I did, i don't think I would know that Oliver has a very late nadir, and I would not know when onset is for Shadoe and Oliver. I do not need to test as often now as I know that Shadoe's nadir is close to 5hrs post shot and Oliver's is close to 10hrs post shot - so different they are.

Please know that you are far from alone now. There are many of us who are going through the same things relating to acro.

FROM CATACRO BOARD:
Hi Bronwen and Bod,

Welcome to the site. I have 2 acro cats: Shadoe and Oliver.

I first started Shadoe on Caninsulin when she was first diagnosed October 2009 but she did terribly on it, and once I found http://felinediabetes.com/FDMB/index.php I switched her to Lantus. She did much better but her dose kept increasing, so I finally had her tested for acro and also for IAA. Her results came back positive for acro and I then switched her to Levemir as it is apparently better when getting into high doses. She has had an ultrasound which showed that her organs are not over sized and no problems were observed at this time. She got up to 14u BID went down to 2.75u BID, and is now up at 8u BID.
She has put on some weight and her coat is much better now.

In March this year, I adopted another diabetic cat. He arrived here and was being given Lantus. His dose kept going up and up, so I tested him as well for acro and IAA. His results showed positive for both. For Oliver, I switched him to Levemir as well; it's tough enough with just one acro but to have different doses of different insulins was too much. I decided this time to go for the Xrays to check his organs, etc. His results showed his heart enlarged off centered a bit, and both his liver and kidneys enlarged. He also showed signs of chronic asthma. We will eventually get him the recommended echocardiogram, and I will pick up the asthma meds, puffer, to have on hand just in case he needs it quickly.

There are serveral other acro owners here and also on the felinediabetes site. You will see in my signature that I track their BG and other info on a spreadsheet in google. It's a handy tool to be able to share info with others and allow them to see how Bod is doing and to offer some suggestions based on their observations.

Please do ask any and all questions you may have because we will do our best to get you the answers and info.

To know the road ahead, ask the man coming back.

 

Thanks all of you, I really didn't expect to feel so welcomed & so fast too

Bodmin is indeed on caninsulin, since his dose increased to 6 units twice a day over the last couple of days I am noticing a marked improvement, only going through 1 litre of water a day which I gather from the vet is still 5 times too much but it's better than the 2 litres he was drinking..... he's also picked up a little weight back.
my vet thinks we'll end up on around 15 units but has warned me to watch out for symptoms of "hypo" as the tumour can pick & choose what it does and may stop making the pituitary gland producing GH as & when it feels like.
It sounds like this home testing would really help spot that so thanks for the advice. I'm very surprised the vet hasn't suggested it. I'll check out some of your sheets so I can figure out what I'm doing and go shopping for the testing kits. I'm assuming the human ones will also be fine to use??
To be honest I have no idea what his levels are, the equipment he is tested with each week at the vets just reads "High", although I do remember them saying the reading 720 when this all first started.
His glucose curve done over 24 hours was reading 12 @ 8am - injection - up to 29 mid point then back down as low as 10 by 8pm at 2nd injection time which for a diabetic cat makes no sense at all!! my vet did say if we turned it upside down it would look right :lol:

I'll start tracking these things and keep you all updated. I'll also add a photo of my Bod , he is exceptionally pretty although I am biased :lol: definitely up there with the photo on the FB group of Milo who is gorgeous.......which lucky person belongs to him (we all know the cats really own us...)

 

So glad to see your reply. About BG meters, yes get a people one. I bought a special cat one (Alpha-Track) for over $100 & a box of 50 strips was $65. Needless to say the costs is insane next to the WalMart version I am using. Fortunately, the vet let me return it! You'll see folks ID their meters & often what they like/don't like about them. Ask any of us & we'll give you our 2¢ worth!

To be continued & again, welcome!

 

Helllloooo
Just wanting to send a warm welcome to you. It's "funny" that you mention how your kitty "stuck his tongue out" initially. My Merlin used to do that and I never even thought about that being related to his acromegaly - interesting that even now I am still learning things about my special boy.

I'll look forward to hearing more about your boy but for now will be adding both your names to our "sticky" above if that's ok with you.

Fondly
Patti - and always in my heart - Merlin

 

Back at the vets today, now up to 8 units of caninsulin twice a day!!
I mentioned about glucose testing myself and he seemed really keen on the idea too. He's shown me what to do, lent me his glucose tester. It is one of the above mentioned Alpha Trak ones but luckily I'm "insured for life" with Petplan insurance so the vet will order me one and I don't have to worry about the cost.
He's advised that I do it every 2 hours on one day at the weekend so I can get a feel for what's normal with my baby and then test once a day after that to watch out for any hypo activity with the high doses of insulin. Does that sound about right to you all? how often do you guys test your kitties?
He's also looking into the radiotherapy for me but the place that do it is several hundred miles from home, they don't keep the cat overnight so it would be a daily trip for however long it takes. I'm going to find out the details but before I start anything I need to check if it's right for him. He hates car travel, gets really stressed at being away from home. If it makes him really poorly on top of that and does nothing to extend his life and/or the quality of it then not sure it would be fair to put him through all that, but never know, it may be the best thing......will have to wait and see what info I get back.

First practise glucose reading at vets was "HI" so still over 500.....

 

We generally recommend testing before each shot (twice per day) and occasional spot checks - I usually try for nadir (time determined by doing the curve)

 

Hi just dropping in to say how glad we are that you found this place it is just AWESOME If you have a problem getting so many test done Just wrap him in a big towel and he will relax always give love and treats after makes a big differents will be sending Prayers and Angels to help your kitty Bronwenelizabeth all will be ok LOL Kath :mrgreen:

 

You will want to be testing Bod just before giving his shot because there may be a time when he is too low to be given his shot or maybe you can give him half his normal dose.
If you are going to look at our sheets, you may want to look at my two.
Shadoe has a nadir, low point, closer to mid cycle, which is fairly common, but Oliver is lowest late in the cycle which is strange but can be convenient.

Alot of people just use the One Touch or Aviva meters or the Relion ones in the US. They all have their plus and minus features, and over time, many people end up trying other meters, just to see which one they prefer.

I first started Shadoe on Caninsulin, but it seems it's not as long lasting as Lantus or Levemir, and she really did not do that well on it. Since Caninsulin is pretty much the same as Vetsulin, you may want to switch over to Lantus or Levemir now that you've got the acro dx.
it's up to you but you can run it by your vet and see what you want to do.
Lawsuit against Vesulin Manufacturer
Vetsulin FDAs Warning December 15, 2009

Once you are home testing, you will be able to see how well or how poorly Bod is doing on this insulin. Just looking at the BG at shot times, you can't know if Bod is staying high and flat all 12 hours or if he's coming down a little bit in the middle, then going high when the insulin runs out.

I work during the week so the only testing I can do is before the shots during the week then in the evenings, with any curves done on the weekends.
I honestly can't say what curves for Caninsulin look like as all I did in the beginning was test just before my shots. You can see on Shadoe's sheet that all her numbers were likely what you will see for Bod.

If your vet is really keen on your testing, I am betting he will love to see your sheet with the numbers! We'll get you set up with a spreadsheet and you can add your test results. You publish the google sheet and others can view the sheet any time. You can email the link to the sheet to your vet and he can check it and contact you if he needs to say something about the numbers. Now how convenient is that!

Anyways, best of luck with the dose increase.
Let us know if you have any problems with testing.

 

This vet sounds like a keeper!

It actually is a good idea to test every 2 hours the first few times you do a "curve". You will be trying to find his nadir, or lowest point in the cycle. Once you figure out when that is (for example, Boo's was +6 or 6 hours after her shot), you can cut back to just before each shot and a few spot checks.

 

Your vet sounds terrific!

I think you'll find as you continue to give Bod insulin, he will steadily improve. He should start to put weight back on, and should drink and pee alot less. A lot less. It may take a bit to get to a good dose but since you'll be hometesting you will start to see patterns.

Many of us have timed feeders that can be set up to offer snacks during the day and overnight if desired. KB was a free-feeder before we switched from dry to canned food, but it also lets me space some food intake out to try to keep his sugar somewhat level as much as possible.

P.S. Milo belongs to Wendi.