what I am finding incredibly SAD...

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Patti and Merlin

Patti and Merlin

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I have been on this board for almost 7 years now. I started with Merlin who became an early on "acrocat" here on this board. For years we have fought to have this become more recognized - to have those of us who have more experience with this be "USED" more. It is a disease that you just don't know about from reading a sticky, or a book, or hearing about other cats. I'm afraid to say it's one of those things you best learn about from having one. I for sure don't mean to make us sound special. But these cats ARE different. They aren't true diabetics. They don't follow the rules like true diabetic cats.

I can't tell you how many times any and ALL of us with acrocats have been shot down by others that we are jumping the gun or "pushing" acromegaly. BUT I will tell you - that 9 out of 10 times when we have told someone to have their cats tested - I'm afraid to say - we have been correct. One girl we were wrong on - her cat had IAA. Others have never gotten tested but continue to run high numbers - have wonky numbers - never follow the rules like other diabetics.

I have tried posting "tidbits" off/on thruout the board and I wonder how many of the people here on FDMB truly read them. DID any of you know that 30% of ALL diabetic cats HAVE ACROMEGALY! There are now studies out there that prove this! Can any of you here list off some of the subtle signs...I'm not trying to sound witchy - but these are some of the things we are trying to get out there.

We are NOT trying to be egotistical - we do NOT want to be right! we do not even want to have our own section truthfully - but we do now! And I can only beg all of you to USE US! It is not that we are better than ANY of you! or know more than ANY of you! BUT when it comes to a cat that is doing different things with the insulin - what is wrong with just asking for one of us to take a look. We have a number of years now of experience and know some of the subtleties to look for.

And - this is just a little something of my own little thing to throw out after reading one of the last threads re: low numbers. 30-40's can be ok - sure - when you are there - ready to treat - BUT please please never become NUMB to them. They are a scary and awful thing. I have a true diabetic cat now who had been "rock stable" on a tiny dose of 0.5u bid Lantus. (Which after having Merlin who used to get up to 45 units of PZI/day and 24 units R/day - this is a ridiculously low dose to me) Thought I was cruisin - well he hypoed and SEIZED! It scared the S#!T out of me! And I'm a ICU nurse. He'd been 40's before and rock stable - so how low did he go - don't know - gave karo and raced to the vet where by then he was ok. But was he 30?????? I'll never know - but he did seize - so just something to think about!

I hope some of you who read this know me well enough that when I write I truly only mean well. We acro moms/dads want to help - that is our whole goal here on the board.
 
Yet another reason to avoid FB. :lol: I closed my account ages ago.

I think it's great if we get more attention on Acro kitties, and can more quickly recognize them and get them help. I know I and others here have at one time or another roped in an Acromom or two to evaluate a specific cat - when I first got here I wouldn't have had a clue to even think in that direction... more education for all of us is better for the kitties. I am deeply grateful to a couple Acromom's who have been around at times over the past few months, to me they have really added to the support & advice that we are able to provide here.

It's unfortunate when people's words are picked at and pounced on, and instead of straightforward disagreement & discussion of approaches, etc, it degenerates into drama & accusations .... YAWN. I think many of us would agree this board has been there, done that, let's all move on. It's not unusual for us to disagree here on the PZI board, but I think most of the time we are able to do so without it causing hard feelings. I feel sad to see our recent Acro info coming out of a drama-fest, but whatevs, it's still good info. Hopefully the Acro-rents will be able to monitor the various forums to keep an eye out for kitties who may need specialized advice, while still being respectful, and we can all benefit from it.
 
Ok, I'm up to the quiz challenge!

# of Acro symptoms I can name off the top of my head (and mostly b/c someone posted a list just a week or so ago)

1- Big feet & head
2- Pot belly
3- #s don't seem to be moved much by insulin doses in the 1 - 3u range that many cats get a response from
4- Weird # patterns, for example, always seems to be yellow no matter what the dose

Hmmm, ok, that's all I got, I know there are a lot more, and not 100% sure those are accurate.

Anyone (non-Acro-rent) can top my tepid list? :-|
 
The first 2 signs you mentioned are very late on in the stages usually of acromegaly. Those are the textbook symptoms presented but not all acro cats have that. Many don't have them until a couple years down the road.

Actually - acrocats - can drop their numbers on low doses to double digits one day and then the next day get no response from the same type of dose. I was told with Merlin he couldn't be an acro cat because he could go as low as 40. He wasn't always "yellow" altho this was in the days before spread sheets. I could keep him in the 100's but with alot of dosing and crazy scales. It's not necessarily the numbers - it's sometimes the patterns and wonkiness.

forgive me as I know I'm abit slow at times - missed the reference to what FB has to do with this??? altho not important in this discussion really. And just wondering if you felt we/I were/was being disrespectful? Have I missed something? And what's an Acrorent? Again - I'm the slow one here! :oops:
 
Ya know, I know some here don't like posting from one topic to the ex-topic that contained the drama. I don't know why? Like trying to protect the newbies poor eyes or something?? I never got that and I want the full story. So can we post the links to the original drama so I can read and make up my own mind about the issue and not just have to take just one side of the aftermath? Or if no links so I can read the whole thing, at least give me a good Cliff notes re-cap [but links preferred]?

Yes, I shake my fist at than darn FB!! It's so bad news for this forum. I don't understand why the folks on FB can just go do their own thing with it there and leave us alone.

I did not know about the 30% of cats having acro thing. Is there a link for the research I can read about that?
 
Gator: I believe the original thread was mine from 11/24...it got a little ugly.

I truly appreciate the input from acroparents (maybe that's what she meant by acrorent?). I've been encouraged to seek input from the high dose room, but haven't made it over there yet. Call it denial, or laziness, or just have too much on my mind to add one more thing to my day. Maybe I'll try to get on that.
 
So the acro topic is one that I *should* know more about.

That reading was interesting. From what I read IGF-1 is not the best way *alone* to be assessing Acro in cats?? That perhaps combined with fGH and other exams is the preferred method of diagnosing Acro? Is this still true? Anyway, from what I read 59 of cats had raised IGF-1 and 17 actually ended up being Acro cats. So that's more like 9% or 10% which is still surprisingly high. I would have more questions about that study [mainly about how the cats were selected to send in for the original frutosamine and why 18 from 59].
this procedure
could have biased veterinarians to submit samples from poorly regulated diabetics
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this is exactly what I was thinking but not a deal killer. And I guess I really should read more about this issue but time is short currently.
However, 2 of the 34 diabetic cats with IGF-1 ,800 ng/mL also had fGH concentrations .10 ng/mL, indicating that measurement of fGH should not be the sole criterion for the diagnosis of acromegaly
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Claudia, I think my take away for you at this point is that if you are not going to get the test immediately, to really do your research on this - leave no detail to your vet to [mis]manage. Make sure the right tests are ordered [and are ordered in the right way] that will bring you the most complete picture [and confidence] for the resources you have to exercise. Do not ignore this for the sake of hopeful thinking, really get in on this and get your hands dirty.

I asked about the T4 in the bloods that you had had done earlier but got no response. Was T4 included in the blood panel you had done earlier? Yes, I know it is an unlikely detail and perhaps distraction.
 
I will gladly pull out all the info today for people today. Forgive me as I haven't been attentive to all the acro info lately as I've been busy with other feline health issues lately.

Another thing us acro moms and dads tend to always question is why we are always shot down on getting the IGF-1 drawn. WE have seen people get every other test in the book drawn and have the hyperthyroid test always always thrown in there. I KNOW that that can be an issue and believe me I know that it is very prevalent in cats. (I've had a cat go thru the treatment) BUT I wonder why it is that everyone is so quick to believe in that but NOT the acro? I am not being accusatory here - just asking a question why?

And yes the GOLD standard for diagnosing acro is an MRI BUT not all cats who have acro have a found pituitary tumor but do have acromegaly. The tumor can be located elsewhere. And yet their IGF-1 can be elevated. And IGF-1 are still used to diagnose acromegaly. Dr Lunn (who does the acro studies at CSU) uses them along with other diagnostics. And furthermore - not all of us can afford an MRI or the radiation treatment. Getting an IGF-1 gives many of a peace of mind at least in knowing what is wrong with our cats and planning some for the future for our kitties. It also gives us a support group.

I will look for the exact research study today for you.
 
Although the only absolute way to diagnose acromegaly is a CT or MRI, the IGF-1, along with documented insulin resistance, is good enough...in fact, so good that Dr. Lunn will treat based on these two even if the scan does not find a tumor. A newly diagnosed acrocat SHOULD NOT get a CT or MRI scan...if you decide to treat it must be done at the treatment facility, so it's a very large waste of money to do it twice. And if you're not going to treat (via SRT or more recently, surgery), there's no point in the scan.

The biggest reason to get tested is so that you know...the way you dose, the numbers you want, and the way you handle lower numbers changes a bit. Additionally, it ends most of the dose-fights that occur of "oh my God, you're going to kill your cat" and it does allow for more aggressive dosing until the numbers fall more in line.

The GH test is no longer available in the US.

I have read the study about 1/3 of diabetic cats...what I'm not clear about is if it's 1/3 of diabetic cats or 1/3 of hard to treat diabetic cats. 1/3 of the hard to regulate ones sounds more likely, but the point is, acromegaly really isn't rare. When the acromoms show up and peek at a spreadsheet, it's worth listening.
 
Patti & Boo -

Let the record stand here that I have actively encouraged Claudia to pursue testing. And I have also encouraged her to go visit with the Acro folks. So your a little bit preaching to the choir here as it were. :-D

We are so lucky to have Nancy [another acro mom] in here in PZI who has advocated for testing. And I would absolutely follow her lead on that - I do trust and listen to Nancy so... I'm not sure where anyone is getting the idea that I'm not listening. I believe in questioning everything - vets, FDMB, research papers everything. I might end up at the same place in the end but with way more confidence in the result. I wouldn't call that 'not listening' I would call it 'healthy skepticism.'

From what I just read in that Niessen study it was 1/3 of [seemingly] diabetic cats had 'elevated' IGF-1 not Acro. It was more like 10% that had Acro from that study [which is still a lot!!].

I think the current issue here is not anyone suggesting that testing should not be done - as I understand it is is a matter of resources [$$].

I think the undercurrent of my uninformed advice was that perhaps if there was a way to get IGF-1 with fGH done one might have a more reliable answer in the end [apparently fGH is no longer offered in the US sadly :sad: ]. If one is going to take the energy and resources to do the testing [and has some time to think about it as is seemingly the case with Charlie] then getting ones best bang for the $ might be something to pursue. But again I'm speaking from ignorance so...
 
Please forgive me - as I too don't quite know all that has gone on here. I truly mean no disrespect to anyone nor do I mean to insult anyone here. I must admit for myself that after years of fighting for this that their are times I get defensive. And for that I am truly sorry! :oops:

THANK YOU for reading everything. THANK YOU for making us think. It's what makes us read more, search more, back up more of our answers and what info we put out their for everyone.

We try to update the sticky regularly with new info - my responsibility. Something I'm behind on right now but will correct this w/e. But it's something - like all the diabetic info that helps people here - that we hope people really read.

Please if you ever find something YOU think isn't right - or needs clarification - I would love to be corrected or notified. I want to know these things!
 
I agree with Gator, we have actively sought out help from the acro people on at least 3 or 4 occations over the last several months to come and look at Charlie's ss and give their opinions. Nancy & Cody and Blue have stuck around to offer their opinions and guidance and I'm pretty sure everyone here has been thankful for that.

We know our limitations, that's why we were asking for experienced eyes.

She has been urged to get the testing, but I have heard several times that it isn't absolutely necessary and is not an option for them at this time.

PZI is a small group, everybody knows everybody else and I believe everybody cares about everybody else and their cats and we tend to do things a little different here because of that. When something comes up or someone has a wild thought they throw it out there and we have a sort of round table discussion about it with everyone putting in their 2 cents, sometimes we agree sometimes we disagree, but the final decision is always made by the person holding the syringe who now has everyones opinions and the reasons behind them to base their decision on, and their decision is respected and supported.

I thought that was what this board was all about. People coming together with a common goal, to learn, to teach, to exchange experience, to laugh together, to cry together, to mourn each others losses, to help each other through this ugly battle with FD.

((((((Group Hug))))))

Robin
 
I hope no one thinks I'm sitting around all day doing nothing for Charlie. In my spare time, when I am not mothering a 1-year old, gestating a pregnancy, cleaning, cooking or studying for my upcoming classes, I have done my own research on acromegaly and insulin resistance. I have not tested, and I will not test until our financial situation improves. I think that's fine for us right now. Nancy is kind enough to pop by and offer advice with Charlie, and I really appreciate it! (blue is not a high dose mom-- although her Atlas was up to 8u bid for a while there, he went back down in dose-- she has experience with pzi and lantus, but most importantly, she is from my area). Nancy told me that there is no real reason to test right away, because not a whole lot will change based on it. Maybe dose increases that are a bit more aggressive, and an insulin change...but that's about it. I do appreciate reading all the info on acro, however. dancing_cat

Gator: I didn't get a print-out of the lab work, so I don't know what specific tests were performed. My vet said it was a "full blood panel" and that the only reading out of the normal range was the blood-sugar.
 
Have them fax it to you or if you do not have a fax, fax to me which will put it into PDF and I can send to you via e. PM me for my fax # if you wish.

One more thing/chore to add to your list! ;-)

I'm gonna get a little preachy here so....
But always always always get a copy of ANY testing you have done or and reports or medical files produced for kitties. This includes CDs of imaging INCLUDING ultra-sounds, x-rays/radiographs MRIs & CTs. It is so important and most of the time the vets will not do it unless you request. Sometimes they will even want a fee for the CDs which is just fine. IMHO, any vet that cannot put the ultra-sound session or captures on a CD is not worth having perform a ultra-sound on your kitty.
 
Faxing is unnecessary, but thanks for the offer, gator. I live about 2 minutes from my vet, and was planning to go up there next week to drop off charlie's ss. I'll ask for the results when I go in to do that.
 
Gator & H (GA) said:
Patti & Boo -
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Not trying to be preachy at all...just trying to put out some helpful information. My cat has acro, had SRT, is tested every 3 months for IGF-1, and was tested a couple of times for GH before the test was pulled...Nancy & Cody is wonderful and I'm glad she's been around.
 
I keep a binder for each of my cats. I get copies of everything from my vet office, blood work, results, Xrays, ultrasounds, itemized lists of charges, breakdowns so I know how much each thing cost.
I want to look at each value of the results because 'all numbers are within range' tells me little. The number could be at the high end of the range but on the next tests, the number could have dropped to the low end of the range.. I ask how come.
To have all the paperwork will help you feel more in control.

As others have said about Charlie, it's OK if you can't afford to get him tested now, and I think there have been others in the past who were not tested for one reason or another, but were assumed to have the condition. Just so that precautions are taken in case Charlie IS positive for acro and/or IAA, Charlie should be just fine. After all, we know that how Charlie is treated won't change; he'll still need to receive the amount of insulin that gets him some decent numbers, staying about 100.

It's true that some cats really ARE 'thirsty' and so you just have to keep on as you have been, slowly and cautiously.
 
#1 I value each and everyone of the folks on FDMB, the old timers and even the newbies teach me things. why cant we just get along??

Patti, You shouldn't be sad, the PZI folks have been very gracious and appreciative of the info I have shared the last few months about acro. I have been following Claudia since she started in late Sept (?) I know I am one of the newer acro moms, but I try to represent acro and FD in an accurate, scientific and informative way. PZI doesn't get much old timer traffic.

We all know that Charlie fits many of the characteristics of an acro. I have known this for several weeks even though Charlie has only recently moved up to 4.8u. However, at 3-4u, without a diagnosis, it was a little premature to rally the acro troops espeially since testing is not currently an option.

11-3-10
Unfortunately he fits a lot of the common acro characteristics:
snoring, big demanding appetite (must be fed at 9 or he flips out, and eats ~14oz/day), difficult regulation, heart murmur, large cat, 9+yrs old, male, (and even the difficulty with anesthesia, which I didn't follow up on, could be from airway overgrowth common in acro) eating another cats vomit (desperate hunger- Cody used to eat tomatoes off the counter), normal pzi onset and duration with flattish nadir in relation to the dose (growth hormone blocks many insulin receptors, so insulin doesn't function efficiently, but does work somewhat)

-all in the absence of dental or other medical conditions (which could explain difficult regulation).
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This is just one of many. Claudia understands and is smart. She is balancing her options and doing what she can for her WHOLE family. As many of you beans well know from your loads of experience, it not always possible to test.

I HATE bickering- it makes me want to pick a new hobby, but I am here to help folks. PZI is certainly under- assisted. Part of this is possibly because so few of us have any experience with Prozinc. Even though I have moved on to Levemir, and Love it, there is a NEED right here, so this is where I am trying to help. I welcome help, but I hope those who add posts anywhere on FDMB do so in a positive constructive manor. So many of us have so much to share- it would be awesome to learn from each other. learning happens best in a calm and affirming setting.
 
Rob & Harley said:
PZI is a small group, everybody knows everybody else and I believe everybody cares about everybody else and their cats and we tend to do things a little different here because of that. When something comes up or someone has a wild thought they throw it out there and we have a sort of round table discussion about it with everyone putting in their 2 cents, sometimes we agree sometimes we disagree, but the final decision is always made by the person holding the syringe who now has everyones opinions and the reasons behind them to base their decision on, and their decision is respected and supported.

I thought that was what this board was all about. People coming together with a common goal, to learn, to teach, to exchange experience, to laugh together, to cry together, to mourn each others losses, to help each other through this ugly battle with FD.
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Well put Robin!!!!

Patti and Merlin said:
forgive me as I know I'm abit slow at times - missed the reference to what FB has to do with this??? altho not important in this discussion really. And just wondering if you felt we/I were/was being disrespectful? Have I missed something? And what's an Acrorent?
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Acro-rents - yes, I was struggling w/not having to type moms/dads, but I like Acrobeans better. :)

FB was in reference to a comment that Rebecca edited out, I gather there was some nastiness over there by some.

Charliemeow said:
I hope no one thinks I'm sitting around all day doing nothing for Charlie.
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Not at all IMO. I think you were just caught in the cross-fire. No worries, just keep doing your thing! :)
 
Please again forgive me - I never meant to cause problems altho I surely did. I have been absent alot the last couple months due to other feline health issues I"ve been trying to learn. With getting pm's that people needed help here I jumped in and most likely I did not read enough before responding. It was not my intent and never is to stir things up. I'm sorry Nancy - I hadn't seen you posting in what I read -
 
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