Sticky Acrocats, what were your IGF-1 results?

Description of IGF-1 from the US National Library of Medicine NIH: Insulin-like growth factor 1 (IGF-1) a growth hormone

Copied and Reposted from the old FDMB board.

Acrocats, what were your IGF-1 results?
Jess & Earl
Date: May 6, 2008 09:07PM

I've searched the board and it seems like >100 is considered indicative of acromegaly (MSU's normal range is 12-92), but I'd like to know what our acrocats' numbers have been. 120? Or more like 350?

Edited to add: I did an IGF-1 test on SettleDown (nee Wilson) and the result was 44 (normal).


Edited 2 times. Last edit at 08/28/08 11:57PM by Jess & Earl.

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Re: Acrocats, what were your IFG-1 results?
Posted by: Carolynn and Fletcher
Date: May 7, 2008 08:43AM

Fletcher's was listed as >203 (done at MSU) so the exact measurement couldn't be determined on the scale at that time.

The interpretation stated: "The insulin autoantibody concentration is normal, but the insulin like growth factor concentration in this cat is extremely high and in a range consistent with the diagnosis of acromegaly."

Carolynn

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Re: Acrocats, what were your IFG-1 results?
Posted by: Vanassa and China
Date: May 7, 2008 09:50AM

This is what the interpretation stated for China:

"The elevated concentration of insulin-like growth factor 1 (IGF1) on this report is determined from dilution of this sample. Does this cat show physical changes that are consistent with acromegaly? It is recognized that elevations of this hormone may occur as a metabolic response to diabetes mellitus in some cats, but I think this result higher than what would be expected in that latter scenario". "

China was listed as >275 and it was done at MSU as well.

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Re: Acrocats, what were your IFG-1 results?
Posted by: Patti and Merlin
Date: May 7, 2008 12:41PM

Merlin's IGF-1 was 183 (done @ MSU). I have to admit I never asked to see the actual report (but I think I'll get it now). By the time I had the bloodtest done - I more or less knew Merlin had acromegaly because of his crazy numbers, his large insulin requirements AND that his buddy Fletcher (whose numbers Merlin matched) already had a + acrotest!

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Re: Acrocats, what were your IFG-1 results?
Posted by: Stephanie and Pheobe
Date: May 7, 2008 01:29PM

Oh Gosh......we have a different form of measurement over here - I know it was over 1,000 maybe over 1,200 - it was all over the phone with my vet and to be honest it was all a bit of a blurr....

I'll ask Beth though - I remember I sent her a text so she may remember - I'll ask what Pickle's was as well. (I also try and get a conversion)

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Re: Acrocats, what were your IFG-1 results?
Posted by: Dale Ann
Date: May 7, 2008 02:02PM

>147. Done at MSU, year - 2004.

Edited 1 times. Last edit at 05/09/08 09:16AM by Dale Ann.

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Re: Acrocats, what were your IFG-1 results?
Posted by: Beth & Pickles (Tam GA)
Date: May 7, 2008 03:13PM

Stephanie and Pheobe Wrote:
-------------------------------------------------------
> Oh Gosh......we have a different form of measurement over here

Not really surprising.


USA it's ng/ml and the rest of the world (SI units) it's nmol/L

ng/ml to nmol/L divide by 0.131
nmol/L to ng/ml multiply by 0.131

I know that Pheobe's IGF-1 was higher than Pickles and hers was 1948 nmol/L (255 ng/ml). Anything over 1000 nmol/L (131 ng/ml) is deemed indicative of aromegaly at Cambridge Labs who does the testing for the UK and some of Europe.

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Spunky is in the lead w/ 311... *NM*
Posted by: Jennifer and Spunky
Date: May 7, 2008 07:07PM

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Re: Acrocats, what were your IFG-1 results?
Posted by: Lara, Paddy (GA) & Maisie
Date: May 8, 2008 03:57PM

I was only told by my vet that Pad's had tested positive for Acromegaly, but when I got in touch with where the test had been carried out (Cambridge) they just said he was over 2000 (262), but didn't give me any more detail than that.

For some reason Steph, I'd got it into my head that Pheobe had a more accurate number given that was lower than 2000 - but I guess if it was higher than Pickles, that doesn't leave much of a gap!

I wonder if his levels would have been lower if I'd had the test done considerably earlier than I did - do they gradually increase over time or do they start and generally remain at the same level (assuming the hormone release doesn't have a break)?

Lara

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Re: Acrocats, what were your IFG-1 results?
Posted by: Deanie and Boo
Date: May 8, 2008 04:38PM

How can 3 tests run at the same lab have values of >147, >203 and >275?

If Merlin's value was 185, why would any value be reported as >147? Their assay range evidently goes at least as high as 185 based on Merlin's result.

Something's not right there.

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Re: Acrocats, what were your IFG-1 results?
Posted by: Phoebe and Norton
Date: May 8, 2008 05:08PM

Could the test procedure / accuracy have been refined and improved over time?

When were these tests done? Month/Year would be enough

The testing accuracy / range would be dependent on the type and calibration of the equipment used - if that was changed or upgraded over time.

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Norton (GA) IGF-1 = 331 *NM*
Posted by: Phoebe and Norton
Date: May 27, 2008 12:26PM

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Madison IGF-1 = 582
Posted by: Phoebe and Norton
Date: August 21, 2008 09:58AM

Joan and Madison currently post in the Lantus ISG.

Sandy and BlackKitty are having blood drawn for the acro test today (also Lantus ISG posters)

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Henrietta's IGH1 = 331 *NM*
Posted by: C & Henrietta
Date: August 27, 2008 08:07PM

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Girlcat was 299 *NM*
Posted by: Girlcat & Hope
Date: September 7, 2008 11:40AM

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wendy/milo IGF-1 = 345 *NM*
Posted by: jojo and bunny(GA) and Y
Date: November 29, 2008 01:26PM

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sandy/cecil IGF-1 = 641 *NM*
Posted by: jojo and bunny(GA) and Y
Date: November 29, 2008 01:27PM

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Re: Acrocats, what were your IGF-1 results?
Posted by: Wendi and Milo
Date: January 1, 2009 11:43AM

Just curious . . .
Has anyone looked at what BG numbers the cat was having around the time of the test and/or how much insulin it was getting at the time?

Since there is such a wide spread between IGF-1 numbers, I'm just wondering if their BG's & insulin amounts may have something to do with it what IGF # they got at the time of the test.

Also, Milo has experienced at pretty much every dose along the way "better numbers" - then we have to raise the dose again, to see "better numbers, and so on. But, they have been (before the R) basically the same numbers no matter the dose.

So, is his IGF-1 # possibly lower at better numbers? And with each dose increase does the IGF increase - is that why a dose works for a few days, then has to be raised again - does the IGF output compensate according to the amount of insulin, eventually making another dose increase necessary?

Edited 1 times. Last edit at 01/01/09 11:58AM by Wendi and Milo.

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Insulin amounts & IGF-1 levels
Posted by: Carolynn and Fletcher
Date: January 2, 2009 07:51PM

Looking back at Fletcher's bg's and doses, he was getting about 20-25U per day at diagnosis, yet a month earlier he was needing 40+ units a day. I do believe that when Fletch isn't needing insulin, that his IGF-1 levels would probably be normal (or close to it). Since the IGF-1 levels can fluctuate on a daily basis, it would make sense that when the insulin needs are higher, the IGF-1 levels would be higher, too, although (of course!) there are no studies on this.

About the only way to know this would be to have our acrocats tested again to compare the levels of IGF-1 and insulin doses and see what the results are. That's definitely something I'd like to be able to do at some point.

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Libby's Sterling = 281 *NM*
Posted by: Phoebe and Norton
Date: January 10, 2009 03:06PM

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Leo - 481 *NM*
Posted by: Carolyn and Spot
Date: January 16, 2009 05:02PM

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Madison's follow up IGF-1 and cortisol levels
Posted by: Joan and Madison
Date: January 22, 2009 03:34PM

cross-posted from High Dose ISG:

Maddie's first IGF-1 test was on 8/6/08. The result was 582. At that time, she was getting 8.5u Lantus b.i.d. plus generous doses of R. She was routinely in the 300s and 400s with an occasional 500 or high 200 number thrown in for variety.

Her second IGF-1 test was done on 10/27/08 while she was at CSU for radiosurgery. The result was 569. Dr. Lunn also drew blood for adrenal function testing. At that time, Madison's Cortisol, Baseline was 293 and her Cortisol, 1 hr post ACTH was 432. During this time period, Madison was getting 20u Levemir (rarely any R), and was mainly in the 200s and 100s, with an occasional 300 or under-100 number.

On 11/15/08, she had her first post-surgery follow up test. Her IGF-1 was 537. Madison’s Cortisol, Baseline was 190 and her Cortisol, 1 hr post ACTH was 395. During this time period, her insulin needs were changing drastically. On the date of the test, she got 7u Lev + 2u R. Her numbers were sort of ugly, 400s and 500s, but once I got her back where she belonged (for that time), at 12u, her numbers got better. Shortly thereafter, she earned a rapid series of dose decreases again.

Her most recent post-surgery testing was on 12/15/08. I just got her test results back. Madison’s Cortisol, Baseline was 196 and her Cortisol, 1 hr post ACTH was 371. Her IGF-1 was up to 713! On 12/15/08, she was getting 6u Lev. Things were changing rapidly, so her numbers were up and down as I tried to find her new correct dose. Her numbers on 12/15/08, the date the blood was drawn for the IGF-1 test, her numbers were great, though.

It makes no sense to me that her IGF-1 could be up to 713, but her insulin needs decreasing. Any thoughts/comments?

=========

Sarah (Dusty) from the catacromegaly.com board wrote to me:

"I have no idea what is going on now with Maddie, but I found this article that says that IGF_1 has been tried as a treatment for diabetes: http://en.wikipedia.org/wiki/Insulin-like_growth_factor_1

IGF-1 has been manufactured recombinantly on a large scale using both yeast and E. coli. Several companies have evaluated IGF-1 in clinical trials for a variety of indications, including growth failure, type 1 diabetes, type 2 diabetes, amyotrophic lateral sclerosis (ALS aka "Lou Gehrig's Disease"), severe burn injury and myotonic muscular dystrophy (MMD). Results of clinical trials evaluating the efficacy of IGF-1 in type 1 diabetes and type 2 diabetes showed great promise in reducing hemoglobin A1C levels, as well as daily insulin consumption. However, the sponsor, Genentech, discontinued the program due to an exacerbation of diabetic retinopathy in patients coupled with a shift in corporate focus towards oncology. Cephalon and Chiron conducted two pivotal clinical studies of IGF-1 for ALS, and although one study demonstrated efficacy, the second was equivocal, and the product has never been approved by the FDA."

In the wiki article, it notes that: "..levels do not fluctuate greatly throughout the day for an individual person..." I wonder if that has been determined to be true for felines. I've been thinking about some questions that I want to ask Dr. Lunn (she's doing the radiosurgery trial study at CSU that Madison participated in) next time I talk to her. Does anyone have any suggestions?

Edited 1 times. Last edit at 01/22/09 03:36PM by Joan and Madison.

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nina/KB IGF-1 = 317 *NM*
Posted by: jojo and bunny(GA) and Y
Date: February 3, 2009 10:43AM

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christina/Stormy IGF-1=521
Posted by: chriscleo
Date: February 19, 2009 05:36PM

test results came back 2/17/09.

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Notes from an Acroperson
Posted by: Megan and Black Bear
Date: February 24, 2009 04:05PM

I have been reading all of your posts about your acrokitties with great interest. I have had symptoms of acromegaly for six years. My MRI's were "ambiguous" until a year and a half ago, when I had my first seizure. Shortly after that, my IGF1's started rising above normal. It was only then (after years of desperately trying to get doctors to believe that something was happening) that I could persuade an endocrinologist to even order the confirmatory "gold-standard" test for acromegaly in humans, the OGGT or oral glucose tolerance test. These came back positive; I got diagnosed with acro last summer and had surgery last September.

I've been working on a post about what it feels like to have this disease, which I want to post on the High-Dose forum. I have so much admiration and sympathy for you and your kitties. As for this question, in humans the IGF1 represents an average over time, not a snapshot, and thus shouldn't reflect day to day changes. That said, I've had double tests drawn at the same time come back with readings 20 numbers apart.

None of my experience has suggested that fluctuations in BG immediately affect IGF1 readings, but I'm not *really* a cat

On the other hand, everything in my experience has taught me to trust my own perceptions and observations first, and the lab numbers second. I've earned my insights. You *know* your cats better than any lab test does.

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Re: Notes from an Acroperson
Posted by: Vanassa and China
Date: February 24, 2009 04:13PM

Wow Megan! This is really interesting! I would love to hear more about how it feels to have Acro. Although my baby has gone on to a better place now, I am very curious as to how he may have felt during the process the entire process. Please feel free to PM me or post on the board, as I am sure that others are curious as well- especially in the hi-dose group because most of us battle with Acro on a daily basis.

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Re: Notes from an Acroperson
Posted by: Beth & Pickles (Tam GA)
Date: February 24, 2009 05:40PM

We have often wanted to talk to human acromegalics, to try to get an understanding what it might be like for our feline friends. Thank you for posting.

Megan and Black Bear Wrote:
-------------------------------------------------------
> None of my experience has suggested that
> fluctuations in BG immediately affect IGF1
> readings, but I'm not *really* a cat

BG fluctuations are a result of changes in the IGF-1 levels. BGs don't affect IGF-1 levels.

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Re: Acrocats, what were your IGF-1 results?
Posted by: mrmush
Date: March 7, 2009 04:20PM

Sam Wade, diagnosed MSU 11/08 IGF-1 = 433

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bonnie/porscha IGF-1 = 357 *NM*
Posted by: jojo and bunny(GA) and Y
Date: March 13, 2009 06:47PM

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Buckwheat IGF-1 = 196 ... IAA = 0
Posted by: KT & Buckwheat
Date: April 15, 2009 04:28PM

He has a differential diagnosis.

KT & Buckwheat

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Boo-ki = 407
Posted by: Joan and Madison
Date: April 25, 2009 01:23PM


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Toby IGF-1 = 256; IAA = 2
Posted by: Jill & Alex
Date: April 27, 2009 11:28AM


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Re: Acrocats, what were your IGF-1 results?
Posted by: asil & mouf
Date: May 14, 2009 12:26PM

mouf just got results back... IGF-1 was 112..

interpretation said: the IGF is only slightly elevated and not as high as we usually see in acromegaly..

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Juanita's Chika IGF-1 = 492
Posted by: Jill & Alex
Date: July 16, 2009 12:44PM

Edited 1 times. Last edit at 07/16/09 12:44PM by Jill & Alex.

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Re: Acrocats, what were your IGF-1 results?
Posted by: Barbara and Misha
Date: July 31, 2009 07:00PM

For the record, Misha's was 381 in July 09. Done at MSU.

Barbara

Edited 1 times. Last edit at 07/31/09 07:01PM by Barbara and Misha.

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Kathy & Kitty IGF = 92?
Posted by: Heather & Boo
Date: August 1, 2009 09:04AM

Can't find the exact number, but it was the high end of normal. Depending on how he does, Kitty might get tested again later on.

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Bayley was just diagnosed yesterday - we are still absorbing this - her numbers were:

IAA 7%
Sematomedin 233

 

Cody's IGF 1 = 280 (norm 12-92)
done at MSU Feb 3-5, 2010
IAA = 9 (+ = >20)

 

2/26/10 Holly/Pablo IGF-1 397
3/5/10 Gayle/Shadoe IGF-1 120; IAA 7%
3/5/10 Jen&Milo IGF-1 247

 

Hi everyone, I'm not very experienced in this board, but hope to learn more. After reading about high dose cats, I realized my Obie was probably acromegalic. Well, yep, he is! His IGF1 is 409!!! I have him up to 10 units levemir twice a day, but it seems he still needs more. He is incredibly hungry all the time. I switched him several months ago off of dry food. He is currently on Wellness cat food and gets a little piece of raw meat with his dinner. He also got a PLI done which shows him to have pancreatitis. What do I do now? I don't know how much to feed him! (He gets 1/2 of a 5.5 oz can three times a day. Is this too much, not enough. Acckkkk!

Karen (and Obie)

 

It's official. Feeburt is anacro cat.
I believe the IGF result was 396. Yikes.

 

Oliver
IGF-1 = 325
IAA still pending result

ETA: IAA = 60%

 

Bryce
(5/29/2010) IGF-1 = 429 IAA = 8
(10/1/2010) IGF-1 = 521

 

1/7/08 Taco (GA) 388 (12-92)
4/9/10 Betsy 389 (12-92)

Both tests were done at MSU via Antech.

Taco and Betsy were both strays, trapped and rescued by the veterinary clinic where Meowzi gets acupuncture treatments. There is some suspicion that the two cats are related, as they were both trapped in the same area. There were other strays rescued too, from the area. These were adopted by clients - the vets plan to keep an eye out for if any of these other kitties come in with FD, and will have them tested for acromegaly if they do.

Taco's dose was up to 20u BID Lantus.

Betsy is currently on 10u BID Lantus. She lives at the veterinary clinic, and is on mix of dry and canned food.

 

Sooty's IGF-1 result just came in today: 285. (nmol/L)

Test was done at MSU DCPAH, blood sample was drawn on 10/25/2010.

DCPAH Endocrinology Interpretation:
"The serum concentration of IGF1 is elevated and acromegaly remains as a differential diagnosis. Does this cat show physical changes that are consistent with acromegaly? It is recognized that elevations of this hormone may occur as a metabolic reponse to diabetes mellitus in some cats, but I think this result is higher than what would be expected in that latter scenario."

The same report also provided the IAA result, which was 17% (normal, negative).

 

Hi - I'm new to the FDMB. My cat has recently been diagnosed with Acro. I saw this question and got my paperwork out. This is what the dr. report shows: MSU - insulin-like growth factor-1= 477 --HIGH (n 12-92nmol/L) Interpretation by endocrinologist: cromeglly. DDX, can see elevations in GH to some extent with DM, but this level of elevation more likely cromeglly.

I only looked through a few of the replies here, but this seems to be higher than what I've seen others post. We are waiting to get $$ estimates (and time involvement) for having radiation (?) treatment at either UC Davis or a place locally (Bay Area - Northern California). I'm concerned that we are going to spend a ton more $$ than we already have just diagnosing this, and we will lose him 6 mos to a year later. Not sure he is a happy camper anyway. He has long jack-rabbit back legs and has a little trouble walking properly, jumping up/down, etc. And his diabetes is totally out of control. He is on 20u a day of prozinc and last check in the office his BG was off the charts on the accu-read-thingy. I do not do any testing at home and he gets 2 shots a day.

Anyway, that is where we are at. Any thoughts or comments will be appreciated.

Thanks,
Kristen and Calvin (about 12 yrs old. diagnosed with diabetes 9/2010, diagnosed with acro 11/2010)

 

Hi Kristen. There are a number of us with acro cats here on the board. i have put a call out for other acro moms to answer your post here. If u are considering having the surgery done there is a place Colorado State University ? w Dr Lunn that does treatment at a reduced rate that a number of acro moms here have taken advantage of over the past few years. I will have them answer you.As we speak one of our moms just had the procedure done yesterday.

 

Just got mine today.
Coco is 249 for IGF
IAA is 0%

 

Charlie's results:
igf-1: 262
iaa: 22%

 

Tiggers Results diagnosed August 2011
IAA = 60%
Igf-1 = 377

 

Klinger's results:
IGF-1 116
IAA 4

 

Guess we've just joined this exclusive club...

Grayson's results:
IGF-1 236 (normal 12-92)
IAA 50 (normal <20)

dx 5/4/2012

 

Sneakers results:
IGF-1- 481
IAA- 9

dx 6-22-12

**edited- just got the actual results from the vet and she was 481- not 419. Either I transposed or they did.

 

Hi – newly diagnosed Acro cat. I'm Amy, the cat is Thor. His IGF score was 270 – he's a bit of an over-achiever. His BG levels are through the roof too – 600+ consistently for weeks. Trying to convince him that lower numbers are better...

 

Lily was diagnosed in November 2013 and her IGF-1 was 533.

 

Just received results for MurrFee from MSU:
Insulin-like grown factor 1: >521
Insulin antibody: 0

 

newly diagnosed -Menda IGF-1 >521
IAA normal.

 

IGF-1 = 305, where normal= (12-92nmol/L)
Acromegaly confirmed.
Physical exam found:
- slightly clubbed feet
- heavily thickened claws
- protrusion of the mandible (prognathia inferior)

Insulin dosage = 14.0 to 14.5 on 9/3/2016, to keep BG in the 250-400 range.
Leo's FDMB thread during diagnosis period.
.

 

IGF-1 = 317, IAA = 0.

 

Bronx
12/16/16 IGF1-434, IAA 8 (neg).
3/9/17 IGF1-405

 

We are also joining this club. Tested at MSU IGF-1=361, IAA=51.
I'm confused as the test is reported as nmol/l and the articles I have read refer to acro as over 1000 nmol/l
If I divide 361 by 0.131 I get 2,755 which is well above 1000. Is it possible that MSU is measuring in ng/ml and has nmol/l on their report as a reference in error? I haven't seen any cats here over 1000 tested at MSU.

I copied this from the beginning of this thread.
USA it's ng/ml and the rest of the world (SI units) it's nmol/L

ng/ml to nmol/L divide by 0.131
nmol/L to ng/ml multiply by 0.131

I know that Pheobe's IGF-1 was higher than Pickles and hers was 1948 nmol/L (255 ng/ml). Anything over 1000 nmol/L (131 ng/ml) is deemed indicative of aromegaly at Cambridge Labs who does the testing for the UK and some of Europe.

 

Divide nmol/L by 0.131 to get ng/mL (conversion factors found here). Chino's result was 317, which his original vet didn't believe was high enough for a diagnosis of acromegaly, even though I pointed out that the unit of measurement in everything that referenced 1000+ was different than the unit of measurement reported by MSU. 317 nmol/L = 2419 ng/mL. Needless to say, we have a new vet now. Welcome to the club.

 

Yum 1/22/2018
IGF-1 417 nmol/L (H)
IAA 4% (negative)

 

Titan IGF-1 was over 2000 ng/mL according to the IDEXX labs report. It's odd, but IDEXX in UK are using ng/mL as their units, and MSU are using nmol/L,
which should be the SI units. The molecular weight of IGF-1 is 7649 per Wikipedia, so 2000 ng/mL is 2000/7649(grams to moles) times 1000(milli litres to litres)
=262 nmol/L. Like Adrian and Chino said. This is the opposite of what was posted at the beginning of the thread, but two opposites make it right, so to convert from USA to Europe you divide by 0.131.

 

Baby 10/04/2108 IGF-1 347 nmol/L (H). IAA 83%

 

Maestro 10/26/2018
IGF-1 430 nmol/L (H)

 

June 2018 Igf-1 = 382. IAA not done

Cabergoline started October 2018.

 

Foster Tinkerbell

June 13, 2018
IGF-1 =327 (12-92 normal range)
IAA = 14% (=<20 normal range)

 

Cricket:
Dec, 2019
IGF-1: 229

 

Just got the word today. 302

 

Sorry to hear it Janet. Perhaps cabergoline is in C.C.'s future. It has helped some other kittehs.

 

perhaps. radiation is out of our budget. :`( So incredibly sad about it all.

 

Rocket -
7/5/19
IGF-1: 331.

 

Angel.
IGF-1: 315
IAA: 54

:-(

 

Sorry to see this. Wendy and Neko is the resident expert here if you need help.

 

Freckles - Dx Feb. 18/2020
IGF1: >521 (ref. range 12-92 nmol/L)
IAA: 43% (ref. range <20%)

 

Sorry about the diagnosis

 

Yeah. Totally sucks. Kind of takes the wind out of my sail for beating this diabetes thing for now. I see that C.C. was diagnosed about 9 months ago. Noticed much change in her?

 

Hard to say because I think she had it much longer.... I think it's what got her out of her year long remission. I didn't do any other treatment besides increasing insulin. Her highest dose was 12.5-13.... But since starting treatment for hyperthyroidism in December the dose is down to 7-7.5. She does have elbows that bow out... Like a bulldog. Not sure if that's from the acro or arthritis. Her face looks the same as it always did. She's got an acro potbelly (not fat)

 

Ti-Mousse
DX= March 17/2020

IGF-1= 114 (range 12-92 nmol/L)
IAA= 2% (normal)

Interpretation from MSU:
This elevation of IGF-1 is modest and the best I can say is that acromegaly remains as a differential diagnosis. It is recognized that elevations of this hormone may occur as a metabolic response to diabetes mellitus in some cats, so this result may not be viewed as specific for acromegaly.

 

Urine Glucose 420 64 - 170 mg/dL
Insulin-like Growth Factor 1 (RIA)
461 H [12-92]
nmol/L
Endocrinology Interpretation
See Below
02/24/2020 16:21:00 Endocrinology Interpretation
With the clinical information provided in the history, this elevated concentration of IGF1 provides added confirmation of a diagnosis of acromegaly.
Kent R. Refsal, DVM PhD
Professor, Endocrinology

 

IGF1: 381 on June 17, 2020.
She's developed an under-bite and her front legs are bowing a little (chunky elbows).

 

Oh! CC has chunky elbows too! Didn't realize it was from this, I thought it was her arthritis.

 

The chunky elbows are relatively new. When Lily first started signs of diabetic neuropathy in her hind legs several years ago, we (my vet) thought it was arthritis. She didn't go full plantigrade for a couple of years after that. Sad to think we missed the diabetes and acromegaly for so long.

 

Tiggers IGF-1 result was 403. We are currently on 16.75u of levemir, which is still not enough. Ordering cabergoline for a trial!

 

Hope the cabergoline helps. Make sure you give it enough time. Sometimes the dose needs to be increased.

Also if you stop using it, it must be tapered off.

 

Breanna, can order this yourself? My DVM said she didn't feel knowledgeable enough on the subject to prescribe it for Lily. She referred me to an internist but they misunderstood the IGF-1 result so I had little confidence and never went. We're up to 10.5ų Lantus. (And out of strips -- don't judge!)

 

Vet has to offer it.

Ellen, I had to tell my vet to convert the MSU result to the U.K. measurement. Then I had to change vets to get it for Ollie because original vet wouldn't script. I was determined to find someone to script it. It took 4 months. Found someone who knew nothing about it but willing to try.

 

The results for my Badger came back the day before Thanksgiving via a voice mail. I called my vet that Friday and said I wouod like to try cabergoline and then emailed here various links to studies on cabergoline including links to this form. The next week she got back to me and said she wouod prescribe it. She also contacted some compounding pharmacies for best price. A couple of day later I got text from Wedgewood saying it has been prescribed and contact them for payment and other info. The price was $175 for 60 days worth @10mcg/kg SID dosing.

 

My IGF-1 result was >521. Test performed at MSU.

 

Ollie's was 382. One year later it was 432. Dr didn't order IAA even though I asked for it.

 

Howie first tested in Sept and his IGF-1 was 83 and his IAA was 63. I retested his IGF-1 in January and he was 532.

 

That's quite a difference in 4/5 months. I just looked at Howie's SS though and his numbers are very good on the reduction!

 

1st MSU IGF1 test on Jan 19 2021 was 393 (12-92) and IAA was zero (<=20)
2nd MSU IGF1 test on Apr 1 2021 was 440 (12-92)
Kierra is currently on 32 units Lantus 2x/day

 

Hello everyone. I'm Wendy & my Sugar baby is Sammy, a 12 year old Tabby that was diagnosed with FD 10/26/20. He's also been diagnosed with Acromegaly with a IGF-1 of 434 & is currently unregulated & on Lantus 12 units 2X per day. He also just started 0.70 dose of Cabergoline (started every 72 hours, currently every 48 hours) last week & has a Libre on him for 24 monitoring. We've been using the Pettest glucometer 3X per day (AM pre-shot +6 Nadir & PM pre-shot) since his diagnosis & his numbers continue to be all over the place. We're hoping that the Cabergoline will help to lower his insulin dose & get his numbers down to where he needs to be.
I would appreciate any info on Cabergoline from other Acro pet parents. TIA & happy to be here!

 

Chicamonkey was diagnosed with diabetes 11/15/20
And when , on TR, her bg started rising with higher doses of insulin i became suspicious that something else was going on. min February she was diagnosed acro and IAA at 188 and 88% .
I was told. To wait until 9 units of insulin was reached without bg regulation to test again.

 

Hi Wendy. How is Sammy doing?

 

Has anyone seen a decrease in IgF-1 / IAA numbers without any kind of treatment?

 

I believe that, from what Wendy has said, the tumor produces varying amounts of growth hormone (or, I guess if would be more correct to say that it causes the pituitary to produce varying amounts) at different times — sometimes less, sometimes more. I don’t know that anyone here has had that measured but Wendy’s historical knowledge of the FDMB should be valuable here. I do think it is amazing that Monkey’s insulin dose has needed to be reduced so much, but I suppose that could be IAA breakthrough or glucose toxicity breakthrough — or, yes, possibly her tumor is not as active right now? As for IGF-1, I always got the impression that you could re-test many times, and you would very likely get a different number each time because the tumor is not in a steady state. I will be interested to hear Wendy’s take on this. She learned a lot from the doctors who did Neko’s SRT (twice.)

 

I know! The whole thing has been amazingly and interestingly puzzling! Like you, I suspect glucose toxicity breakthrough and a decrease in tumor output.... I’m ready for whichever direction we go in but I just wondered if anyone has gone through a decrease like this?
When she was first diagnosed the vet said wait until 9 units and if not regulated we will retest.... but they didn’t give me any rationale for that

 

IAA - 63%
IGF-1 - 393

But as Suzanne said the other day, I pretty much knew this diagnosis was coming. His head and feet have been looking a little bigger, squinting in the light (also cataracts but that's probably "old age"). I had hoped it was my eyes deceiving me :/

We'll start Cabergoline next week.

 

Olives IGF was 382 at dx. Dr didn't order the USA even though that's what I was asking for. His rationale was there is no treatment except raising the dose.

Took months to find vet who would script cabergoline. In 10 days Olive bs started dropping. In 3 weeks of starting she was getting half her dose.

I had IGF retested after 1 yr on cabergoline. It went up to 435.

Wendy explains the tumor pulses. I learned the signs Ollie exhibited when it pulsed.

 

Diabetes dx - 8/2019
IAA -1 6/14/2021
IGF -151 6/14/2021

Acromegaly wasn't a surprise. I suspected for awhile.

 

Snuggie
Diabetes Dx 10/27/20
Acro Dx 6/24/21
IAF-1 525 at time of Dx
Went up to 8u Levemir 2x daily and that was his magic number
Started cabergoline 7/2/21
Ready for a dose decrease to 7.75 (unrelated to cab) on 7/3/21

Just catching up; last week was a whirlwind with all the blues and greens and something new every day!

 

Allie
Diabetes Dx 11/2020
Acro Dx 7/22/2021, IGF-1 =351
unregulated - at 20 u BID Lantus
Started cabergoline 8/18/2020

 

Done at MSU in Feb 2022 IG-1 412

 

My Snuffles IGF-1 was 433 in Nove 2020 and he started on cabergoline shortly afterwards. He is doing well it took almost a year for his insulin needs to go down from about 14 units twice daily to 8 units. It is now creeping up to about 10 units twice daily. I can keep his BGs below 150.
This is alot better than my MurFee whose IGF-1>571. His insulin needs just kept goint to over 50 units twice daily.

 

Chewie was diagnosed with diabetes in July 2022, and with acromegaly today, 11/15/2022.
Her IGF-1 came in at 283 (done by MSU).

 

Welcome to the club you really didn't want to be in!

Her spreadsheet reads a little bit like IAA too, was she tested for that?

 

I have membership in a few of those already... what's one more

She was not tested for IAA, I thought she was since the vet receptionist said they were doing the "insulin panel" at MSU, but turns out it was only IGF-1.
Finances are tight, so I probably won't order the test, since there doesn't seem to be a treatment for IAA anyway?
Chewie's next step are an echo and a urine panel, hopefully in December.

 

Hello to all,

Diabetes diagnosis: 29Nov2023
Started caninsulin:11Dec2023
Started Lantus:20/Dec2023
24Feb2024: 7.5 iu BID Lantus
29Feb2024:2.0 iu BID Lantus
Acromegaly diagnosis: 23Feb2024 IGF-1>1000 ng/ml Acromegaly: > 665 ng/ml Vet Med Labor GmbH Division of IDEXX Laboratories Leipzig
Started cabergoline: 01Mar2024 1.3 ml every 24h The strength of my Cabergoline is 50μg/ml (Galastop syrup 50mcg/ml) Kokkinoulis weight is 6.7 kg so the dose is 1,3 ml


At dose 7.5 iu after some days in greens suddently every changed and the dose has needed to be reduced so much.I suppose that could be IAA breakthrough or glucose toxicity breakthrough. This has happened before he started gabergoline.