Merlin's Test Results (partial)

[Cynthia & Merlin (GA)]

http://www.felinediabetes.com/FDMB/threads/merlins-just-pitiful.201609/#post-2242179

Merlin tested elevated for IGF-1 at 260 which my Internist says is likely for an unregulated diabetic cat. She says 1,000 is the benchmark for acromegaly. His IAA is still pending. I have increased his dose this morning following TR to 4.0. Since Sunday, he has been looking a lot better. Sunday was a really good day. The rest of the week is good, but no Sunday ;-). He is still tired, but very affectionate. I will be adding a phosphorus binder to his food upon delivery (Friday), along with Nordic Naturals Fish Oil (suggested in a interview with Dr. Pierbon). I really do hope to see some yellows today/tomorrow. Please wish us luck and thank you for this board.

 

[Olive & Paula]

Did you get copy of the results? I only mention it because Olive is 382 IGF. The reference range in Olive's results was 9-92 US measurements. The UK uses the 1000 measurement. I had to have my vet revisit the report, had 2nd opinion done, both vets agree she is acro and she has all the symptoms except broad head which is what my vet was going on visually. When I converted to UK measure Olive is over 2900. Most information on it is in UK measures. You might want to check with them again.

 

[Cynthia & Merlin (GA)]

Did you get copy of the results? I only mention it because Olive is 382 IGF. The reference range in Olive's results was 9-92 US measurements. The UK uses the 1000 measurement. I had to have my vet revisit the report, had 2nd opinion done, both vets agree she is acro and she has all the symptoms except broad head which is what my vet was going on visually. When I converted to UK measure Olive is over 2900. Most information on it is in UK measures. You might want to check with them again.

Thank you for that. Merlin’s reference numbers were similar. I requested a copy earlier today and will follow up with his Internist.

 

[Wendy&Neko]

Sorry to hear about the positive acromegaly diagnosis. We've had several US vets here tripped up by the "greater than 1000 is positive", because so many of the articles published recently come out of the Royal Veterinary College, which uses nmol/L vs. the US (MSU) which uses ng/ml. Sort of like there are differences between the US and world blood glucose measurements. As Paula says, over 92 is positive here. I've even heard the recommendation that closer to 92 get retested in 3 months.

Since you now have a positive result for a high dose condition, you might want to consider fast tracking him to get to good numbers sooner. Since you are following TR, and if you can commit to making sure you get a second test besides the preshot in each and every night, you can increase every 4 cycles, slowing down to 6 cycles when you start to see yellows. Quoting from the Tilley's page on the tight regulation protocol:

However, if the cat is producing continuously high BGs (nadir always >=300 mg/dl), only hold the dose for 2-3 days before increasing it by 0.5 IU.

If you do choose to do the fast tracking, it would be good if you can post every day so we can keep an eye on how things are going. There is a dose out there that will get Merlin into better numbers. We just want to find it as quickly and safely as possible.

 

[Cynthia & Merlin (GA)]

Merlin’s # is 260 nmol/L

I saw this posted in this forum a while back:

USA it's ng/ml
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

So to convert to UK measurement, 260 x 0.131 = 34

Am I doing this wrong?

 

[Wendy&Neko]

Did you get the blood testing done at MSU? If yes, it's positive over 92.

 

[Cynthia & Merlin (GA)]

Yes, MSU. See above. It looks like it’s 34, no?

 

[Olive & Paula]

No. You need to divide so 260 ng = 1984.73 nmol

You should take the U.S. Number and change it to the UK number so vet sees it in the format they are seeing in their information.

Ask them to revisit the report because MSU is done in the U.S. Measurement and the 1000 reference they are going by is the UK measurement all the papers and journals cite. Then mention if you convert it the 269 U S equals 1984.73 UK.

 

[Cynthia & Merlin (GA)]

Merlin’s 260 is in nmol/L. I have the report right in front of me.

 

[Olive & Paula]

Something to consider is doing the fast track Wendy mentioned above. She helped me do it before we even had our results in. It helps to gain some control over blood sugar quickly.

Also watch for how Merlin starts reacting to Lantus. It started bothering (became aggressive, stings) Olive at 8 units. Most people say 6 units it starts to sting.

 

[Cynthia & Merlin (GA)]

Yes, I did hear about the stinging. Maybe you told me? Thanks for chiming in. Much appreciated.

 

[Olive & Paula]

I'm in middle of dinner and the info is on pc. I will look it up later.

 

[Marje and Gracie]

Hmmmm....I didn’t realize that was his actual report. How odd that MSU would switch to report in SI units if it’s been doing ng/ml all along.

@Wendy&Neko ???

 

[Cynthia & Merlin (GA)]

Worst possible news. Acromegaly # is 1,985. IAA 79% (should be lesser than or equal to 20). Had a long conversation with his Internist to discuss options and possibilities. I’ve started Merlin on a small dose of Buprenorphine to see where that lands him as far as comfort. Will do every 12 hours and continually assess. Fast tracking insulin up to 5U and will reassess. Continuing fluids, Cerenia (on and off), phosphorus binder (starting Friday when delivered) and fish oil.

 

[Cynthia & Merlin (GA)]

Hmmmm....I didn’t realize that was his actual report. How odd that MSU would switch to report in SI units if it’s been doing ng/ml all along.

@Wendy&Neko ???

It wasn’t his actual report. It was an online conversion I found. Report itself is rather confusing.

 

[Marje and Gracie]

It wasn’t his actual report. It was an online conversion I found. Report itself is rather confusing.

Oh......thanks for letting me know.

 

[Marje and Gracie]

Worst possible news. Acromegaly # is 1,985. IAA 79% (should be lesser than or equal to 20). Had a long conversation with his Internist to discuss options and possibilities. I’ve started Merlin on a small dose of Buprenorphine to see where that lands him as far as comfort. Will do every 12 hours and continually assess. Fast tracking insulin up to 5U and will reassess. Continuing fluids, Cerenia (on and off), phosphorus binder (starting Friday when delivered) and fish oil.

I would not increase his insulin to 5u. I would give him four cycles at 4u and then increase to 4.5u. We start the larger increases just a tad later on the dose.

This is where we need to start talking about using R in lieu of fast tracking. Even with the results, don’t get too far ahead in your rush to take the dose up.

 

[Olive & Paula]

I can't not find my notes. They were probably on my old pc which crashed at that time.

I don't know about the chart you show above, but the UK is definitely ng/ml. The U.S. is nmol/L.

Here is the calculator. Scroll down quite a ways to the Insulinlike Growth Factor row. Put the 260 in the 2nd box because you are going FROM nmol/L to ng/ml. Click the < arrow. Different bloods are measured differently so you have to be careful of the conversion app being used.

http://www.amamanualofstyle.com/page/si-conversion-calculator

 

[Olive & Paula]

I see the double whammy IAA. Don't dispair, you can get a handle on this. Diligence and Patience, lots of chocolate and or adult beverage is your friend. As well as all of us here.

 

[Cynthia & Merlin (GA)]

I would not increase his insulin to 5u. I would give him four cycles at 4u and then increase to 4.5u. We start the larger increases just a tad later on the dose.

This is where we need to start talking about using R in lieu of fast tracking. Even with the results, don’t get too far ahead in your rush to take the dose up.

Yes, I meant that I would fast track up to 5U and then reassess. Sorry, I'm not myself.

 

[Sandy and Black Kitty]

Hi there

Sorry to hear the news however now you know why, in the face of increasing doses, Merlin is always swimming in a sea of pinks and reds.

My BK was the first kitty here at the FDMB to test for IAA, and his result of 84% is considered ''extreme insulin resistance". It was a wild and crazy ride since there wasn't anyone who had dealt with IAA who we could turn to for guidance.

The good news is that IAA is self limiting and will eventually go away, so you won't always have 2 HD conditions to consider. Also, you have folks experienced with both Acro and IAA to guide you.

You will have to be a bit aggressive and at the same time proceed with caution.

What time zone are you in?

 

[Marje and Gracie]

Yes, I meant that I would fast track up to 5U and then reassess. Sorry, I'm not myself.

No worries....I completely understand

 

[Cynthia & Merlin (GA)]

Hi there

Sorry to hear the news however now you know why, in the face of increasing doses, Merlin is always swimming in a sea of pinks and reds.

My BK was the first kitty here at the FDMB to test for IAA, and his result of 84% is considered ''extreme insulin resistance". It was a wild and crazy ride since there wasn't anyone who had dealt with IAA who we could turn to for guidance.

The good news is that IAA is self limiting and will eventually go away, so you won't always have 2 HD conditions to consider. Also, you have folks experienced with both Acro and IAA to guide you.

You will have to be a bit aggressive and at the same time proceed with caution.

What time zone are you in?

I am on the west coast. You? And wow, you are a trailblazer. It’s soooo overwhelming. My guy is a black kitty too . Yours was lucky to have you as his Mama.

I keep reading that IAA is not forever. Is it that once you break it, it goes away? So much to learn.

Did you give pain meds? My little guy just started his tonight. Due to his particular circumstances/condition, this is a good move. I think he’s been suffering and for so long we thought that it was just that he was unregulated. It all makes sense now. I want him to feel good; it’s been way too long :-(

Thanks so much Sandy; my heart is hurting.

 

[Marje and Gracie]

Is it that once you break it, it goes away?

It can be self limiting, too.....usually after about a year.

 

[Sandy and Black Kitty]

I'm on the east coast.

For starters, below you will find some important information about IAA-

• Injected insulin first gets bound to the antibodies. Any insulin that does not get bound goes toward metabolizing sugars. How much goes to antibodies and how much goes to metabolizing sugars is anybody’s guess and a moving target

• IAA can retard the initial rise of available insulin after an injection.

• IAA can lead to an increase in the half-life of free (unbound) insulin in circulation because some bound insulin gets released into circulation. The increase in half-life can lead to prolongation of action.

• The release of insulin from the antibodies can happen at inopportune times

I keep reading that IAA is not forever. Is it that once you break it, it goes away? So much to learn.

Once it breaks it does go away however as long as your kitty is on insulin if the IAA test was repeated the result would be the same as when the IAA was active.

Did you give pain meds?

No, IAA does not cause pain.

I want him to feel good; it’s been way too long :-(

You are on the right path now.

I'm fading so may not be back here tonight. I will be back with more info tomorrow.

Hang in there and hang in here..

 

[Sandy and Black Kitty]

So, on the IAA side of the equation you must always be on the lookout for signs that the IAA may be breaking

As you can see on BKs ss, I used a great deal of Humulin R (R for short) to try and get his BG out of the pinks and reds. I started R during a crisis, when after 2 episodes of DKA in as many months, ketones were still appearing in his urine. This was well before we went down the high dose testing path. I encourage you to consider learning to use it. It is a great tool for IAA.

As it happened, when BKs IAA started to break, along with 13.5u Lantus every 12 hours I was using around 10u of R spread out over each 24 hours. In late October of 2008 I sensed things were changing ...and they were. Being that R is fast acting I was able to reduce his overall insulin dose by 10u real quick. No Depot action on the R side.

 

[Cynthia & Merlin (GA)]

So, on the IAA side of the equation you must always be on the lookout for signs that the IAA may be breaking

As you can see on BKs ss, I used a great deal of Humulin R (R for short) to try and get his BG out of the pinks and reds. I started R during a crisis, when after 2 episodes of DKA in as many months, ketones were still appearing in his urine. This was well before we went down the high dose testing path. I encourage you to consider learning to use it. It is a great tool for IAA.

As it happened, when BKs IAA started to break, along with 13.5u Lantus every 12 hours I was using around 10u of R spread out over each 24 hours. In late October of 2008 I sensed things were changing ...and they were. Being that R is fast acting I was able to reduce his overall insulin dose by 10u real quick. No Depot action on the R side.

Merlin’s acromegaly has been causing him to go into an almost coma-like state. I first noticed this back in May when I gave him his first shot of insulin. In hindsight, it probably was there all along but we were hyper vigilant when we started dosing. Our Internist suggested pressure, or even a headache and all along, for all these months, he has gotten progressively worse. Last week I was at my wits end because he had been lethargic, slow, and looking awful for way too long. So, as his sugars are high, and his disposition is not good, we are dosing with Buprenorphine twice a day starting yesterday. How was BK’s disposition in the thick of it? And your persistence and aggressive treatment is extremely impressive. Right now, I am exhausted. Wrapping my head around this needs time to sink in. I want him to feel good and I have failed.

 

[Krystina & Nelli]

You have not failed. Don’t go there. This is coming from someone who has spent a lifetime brilliantly beating her self up. A great soul.

 

[Olive & Paula]

YOU HAVE NOT FAILED. There was no way of knowing Merlin had these conditions until now. And if your vet is like most, they basically dx based on normal lab reports. Won't even consider the "exotic" tests or conditions. I've had to fight tooth and nail for the tests. Had ultrasounds and echoes done without their knowledge. Got different insulin off the internet because they would not script lantus or levemir. For 2 different cats. I'm still fighting for cabergoline for Olive.

Now you know, and there is help for Merlin. It's time to take control and start getting him to feeling better. It's doable but it will take your due diligence and I think you got that. Oh you will have times you want to give up and be done with it all (that's when you scoff down a bag of Hershey Nuggets, or down a bottle of scotch) and in morning you wake up to Merlin waiting patiently for his test and breakfast and you continue on knowing you are doing the best you can to help your best furbaby.

You so got this, now take action.

 

[Wendy&Neko]

My Neko had both acromegaly and IAA. Actually one if four diabetic cats has acromegaly, so it's fairly common here. You were "lucky" to get it tested for earlier than most of us did. The senior vet at my clinic called them exotic tests, my vet thought you had to get to 10 units before testing - we never did get that high,

But now you have a diagnosis, and we can work on a plan to get him to better numbers and help you recognize and manage side effects. Lethargy is a common acro symptom. It is said there are possibly headaches. I didn't initially, but a couple years after diagnosis Neko went on bupe twice daily. She had bad arthritis too, also a possible side effect. Though again that took a few years to manifest. The buprenorphine did really help her.

Getting to a better dose is one of the best things you can do for Merlin. You are now doing what you can with dosing, it will happen. In the mean time, yes it can be tiring, definitely frustrating, but when you get there, so rewarding. When you start getting those snuggles and purrs again, see him playing again, it will be worth while. I have heard and seen here, that as you start getting closer to a dose that brings good numbers, you will see behaviour changes for the positive.

Hindsight is 20/20. Once I knew a diagnosis, I did recognize a an acro symptom from six months before Neko's diabetes diagnosis. Not uncommon. There are acrocats out there who do not get diabetes, so don't get tested. Now you are in a position to help Merlin. In the mean time, lean on us for help, to vent, to answer questions.

 

[Krystina & Nelli]

YOU HAVE NOT FAILED. There was no way of knowing Merlin had these conditions until now. And if your vet is like most, they basically dx based on normal lab reports. Won't even consider the "exotic" tests or conditions. I've had to fight tooth and nail for the tests. Had ultrasounds and echoes done without their knowledge. Got different insulin off the internet because they would not script lantus or levemir. For 2 different cats. I'm still fighting for cabergoline for Olive.

Now you know, and there is help for Merlin. It's time to take control and start getting him to feeling better. It's doable but it will take your due diligence and I think you got that. Oh you will have times you want to give up and be done with it all (that's when you scoff down a bag of Hershey Nuggets, or down a bottle of scotch) and in morning you wake up to Merlin waiting patiently for his test and breakfast and you continue on knowing you are doing the best you can to help your best furbaby.

You so got this, now take action.

So well said Paula. I commend you and thank you

 

[Olive & Paula]

Something to consider, with winter approaching get your insulin before it hits. Should Merlin need higher doses, stock up enough to get through the winter. Temperature needs to be considered when shipping.

 

[Cynthia & Merlin (GA)]

Thanks for the tip. Do you use Lantus? Where do you get your supply. I downloaded the discount card for the pens.

 

[Wendy&Neko]

You may wish to consider a switch to Levemir at some point, due to the stinging issue Paula mentioned above. Some high dose kitties seem to get a bit duration on Lev, though ECID if course. We have seen a few high doses do great on Lantus.

I think many if the US folks buy their insulin on line at Marks Marine pharmacy in Canada, about 35 minutes drive from me. Got a while yet until freezing weather.

 

[Marje and Gracie]

Oh gosh...you have definitely not failed Merlin. Your persistence in finding the answer has shaved weeks off the unknown. We often have difficulty convincing members whose cats are over 6u bid to get the kitty tested for high dose but you took the bull by the horns to find out what was going on. You’ve been wonderfully diligent in recording everything and asking questions.

Merlin is so lucky to have you as his mama. You found the answer, and although it isn’t what you wanted to hear, you will see from the support here that the quality of an acro cat’s life can absolutely improve and they can become their happy selves again.

Between Wendy and Sandy, you have the absolute best resources for treating the conditions and with other members, like Paula, Amanda, and the whole slew of acro moms and dads around, you’ve got a great support network with lots of suggestions.

And then you have the rest of us cheering you all on, supporting you, and answering lots of other questions.

As we often say here about acro cats, he is still the same kitty you’ve always known and loved. He doesn’t feel well right now but he doesn’t know he has acro or IAA. What he does know is his parents are going to do all they can to help him feel better. Lucky, lucky boy.

 

[Olive & Paula]

Thanks for the tip. Do you use Lantus? Where do you get your supply. I downloaded the discount card for the pens.

I use levemir. Olive was on lantus, it was like giving her water. Didn't know about the acro then. At 8 units she started jumping when she got her shot, she also became aggressive to the other cats. Very possessive of her food bowl and theirs. Again vets kind of ignored this.

Mark's Marine is a good place to buy insulin. They will need a script.

Another place to check often is here in the supply closet forum. I have gotten most of mine there since I don't have a script.

Another place to "like" on Facebook is DCIN so you get notifications. Sometimes someone will give them insulin they don't need and they will offer it if you give a donation.