Acromegaly just diagnosed (France)

Hello everyone
I hope I have found the right place to seek advice. It's been a few months since I last posted following Crystal's original diabetes diagnosis in March this year. In the meantime she has proved very difficult to stabilise with Caninsulin (up to 10 units BID but lowered to 8 units BID for the last 2 weeks). Last month I changed to a new vet who is more receptive to trying a different insulin and we started Lantus 4 days ago. However, Acromegaly has also just been diagnosed (by IGF1 blood test but I dont have the actual figures) this week, this is the first case my vet has seen here in France so we are both a bit in the dark but she did say that the prognosis for Crystal wasn't good, perhaps 18 months which is rather devastating news. (she is 10 years old). The vet said that there were no options regarding surgery or radium treatment available (I don't think we are as advanced here as the UK or US) so she's really just on pallative care.

We have started Lantus at 3 units BID and I am using the Stylopen cartridges with U-100 syringes. My vet suggests doing a curve after about a week. I have been home testing for about 6 months now and her average BG is still around 340 mg (19 mmol although I have noticed a drop over the last few days since using Lantus). What is the ideal dosing procedure for Lantus? I read that Lantus has a strict 12 hour gap between shots with no margin for being late or early with the dose, is this correct?. Under my old regime I tested then dosed about 6 am then fed her and again at about 5 – 5.30 p.m. but dependent on when Crystal turns up as she is very much an outdoor cat. I also did a blood test around 1pm if I was around. I might have trouble with dosing dead on 6 pm, will this be a problem? and should I keep the open Lantus in the fridge? What would be the best time to test between doses and also the best time for her main feeds? For the last week I have been feeding raw minced chicken (no bones) mixed with Tatzenladen powdered TCPremixPlus (about 175g daily ) which she loves but as she is so ravenous all the time and cries for food I am supplementing this with GranataPet tinned food (both of which I get on the internet as the choice is very limited here), feeding little and often all day but no food for about an hour before evening shot. I tried just feeding the GranataPet tinned food for a few weeks some time ago but it had no effect whatsoever on her BG, prior to that I was feeding Felix wet pouches.

Sorry for so many questions but I don't know where else to go. Crystal's symptoms include broadened facial features, which seem to be getting more pronounced, particularly around the mouth and gums which causes her to make a terrible noise when eating and drinking, a thickening in the throat area and a general lethargy (although she is still hunting) and the latest development of a severe pot belly. Since a change of diet her diarrhoea has improved and she is now nearly normal. Echocraphy and X-ray have ruled out any tumours.

Thanks in advance for any help, your website has proved invaluable over the last few months and actually led me to ask for the Acromegaly test.
Regards,

Suki and Crystal
SW France

 

Lets get you posting in theLantus Tight Regulation forum, as almost no one posts here anymore.

You'll want to follow the tight regulation protocol here, probably with fast track increases after 2 full days with high nadirs (lowest glucose post shot).

I've copied your post over there in this thread, where it should get some more responses.

 

Hi Suki!

Welcome to you and Crystal!

I agree with BJM - would you post on the TR forum where she linked above? There are many of us that have/have had cats with acromegaly there and we'll be happy to give you a hand. You're not alone. It's not good news, but it's also not a death sentence.

People used to think that Lantus had to be given strictly every 12 hours, but many people find that it's more flexible than that. That's optimum, but you can work with your schedule and life. Yes, keep it in the refrigerator.

That is a huge drop in dose and we'll probably encourage you to increase the dose quickly if she's not having improved blood sugar tests. You don't want her sitting endlessly over 300. That's not good for her body. Hometesting will give us the information we need to help you see what to do next with the dose.

Punkin had all those symptoms too. He passed away last year but he lived 2.5 years after he became diabetic, and the diabetes didn't kill him, neither did the acro. We think he had cancer, probably. The hunger is hard for the kitties. I gave punkin extra snacks of plain boiled chicken because it doesn't have any carbs. That helped him last in between meals.

It's going to be easier to take this one step at a time. There is an overwhelming amount to learn at the beginning! I think the first 2 steps I'd like to suggest are 1) starting a new post on the TR forum and 2) starting a spreadsheet. The blood sugar numbers are most important in context with Lantus, ie, it matters how many hours after the shot. The directions for starting a spreadsheet are a couple of paragraphs down from the top of the page. Holler if you need help with it!

big hugs! julie

 

Hi Suki and Crystal - and welcome from another person who's acro girl cat started on Caninsulin, then switched to Lantus, though we are now on Levemir. We got up to 5 units of Caninsulin before the vet thought it was a good dose, seeing nadirs in the 8.x range. That's on a human blood glucose meter - what are you using? After a couple months on Caninsulin, I saw a substitute vet who pointed me here and got us on Lantus.

Neko's highest dose on Lantus was 8.75U, so there's a good change you'll go higher yet on Lantus. Lantus has an acid base, which can sting at higher doses, so that's why some acrocats get switched to Levemir which is neutral. Neko was fine on the higher dose of Lantus, but if you find Crystal showing aversion to the shot, Levemir may be something to consider.

I hope you'll post over in the Lantus - Tight Regulation Forum that BJM pointed you to. There is a lot of information there that can help you help Crystal, including the protocol that those of us with acrocats here are following. The most important thing you can do to help Crystal is to get her on a good dose so she spends as much time as possible under renal threshold. We've had some quite well regulated cats with acromegaly. And some have lived up to 4 years after diagnosis.

 

Thanks BJM, Julie & Wendy for your help and suggestions, I will follow your advice and to to the TR forum from now on and get to grips with a new spreadsheet.
Regards
Suki & Crystal

 

You can go the the link I posted above which says "this thread".

 

Hi BJM, Wendy & Julie

I've just spent a very frustrating day trying to load up the spreadsheet but I'm having severe problems with my PC and have called in a friend in to help as I'm not particularly computer savvy so I can't do anything about setting up the new spreadsheet for a few days. I'll be back in the forum when I'm up and running but in the meantime I'll carry on with my home testing (Wendy, I'm using the OneTouchVerio IQ meter) and thanks once again for looking after us. I'm just off to the doctor now as Crystal bit me rather badly when I was injecting her on Saturday and my finger has now gone spectic....!

Regards
Suki & Crystal

 

oh no! your poor finger. I hope you're ok.

One of us can set up the spreadsheet for you and then turn it over to you, if that would be helpful. It's a 2 minute thing for one of us to set up. Just let me know if you want that. It can be really aggravating if you're struggling with it.

take care! julie

 

Hi Julie

Thanks for your kind offer but I seem to have a lot of problems with the computer generally so I've got a techy friend calling in on Friday to sort everything out, something to do with an unsupported browser, but I might come back to you if once everything is up and running properly.

I'm not sure if the TR forum would be the right place for me, mainly due to family commitments, I think I will find it a bit difficult to post and do the extensive tests every day, perhaps I might be better in the Relaxed forum, what do you think? are there any acrocats there? I'm a bit overwhelmed by the amount of information I'm trying to absorb but obviously want to do the best for my darling Crystal, even if she doesn't appreciate it and bites me! (doc gave me penicillan tablets for my infected finger).

hugs to you and Punkin
Suki and Crystal

 

there aren't any posters with experience with Acromegaly in the relaxed group. However, we do have people posting in the TR group that aren't following TR. We just ask them to put it in the signature line ("not following TR") so that we help with dosing appropriately.

You really don't have to understand it all at the beginning. It overwhelms everyone. We teach people step by step, what they need to know at that phase. Just take it one day at a time.

I'm a little concerned about the size of the dose drop that you took when switching to Lantus. What kind of blood sugar numbers are you getting since the switch to Lantus?

 

Hi Suki and Crystal!
Most of us acro-moms are over on Facebook. You'd be welcome to join the group.

https://www.facebook.com/groups/68039236605/ is the open group and then after friending the admins, we can invite you to the "closed" group. We just keep it private to prevent people from lurking and overdosing their cats because they see some of our kitties getting high doses.

We have lots of acro experience and most are members here at FDMB.
phoebe

 

Hi Julie

Thanks for your post.
Until I get my SS (hopefully by the weekend) I've been keeping my own records and since Crystal went on Lantus (13 Nov 2014) here are her BG levels (sorry about the format).

13/11/14 6.00 23.8 428.4
+7 hr 19.1 343.8
18.00 17.8 320.4


14/11/14 6.00 17.3 311.4
+6 hr 18.0 324.0
+8 hr 18.4 331.2
18.00 17.0 306.0

15/11/14 6.30 19.4 349.2
+6 hr 17.4 313.2
17.45 19.0 342.0


16/11/14 6.10 16.2 291.6
+6 hr 17.2 309.6
18.00 17.0 306.0
+ 2hr 18.1 325.8

17/11/14 6.00 17.9 322.2
+5 hr 18.4 331.2
+8hr 18.4 331.2
18.00 13.0 234.0
+ 2hr 18.8 338.4
+5 hr 16.3 293.4

18/11/14 6.15 21.0 378.0
11.15 +5 hr 16.9 304.2
13.10 +7hr 19.0 342.0
18.00 18.9 340.2
11.25 +6h 19.3 347.4

19/11/14 6.15 19.2 345.6
9.00 +3 hr 21.5 387.0
0.0
average 18.3 329.5

Generally her levels are less than they were on Caninsulin and the dose of 3 units BID was advised by the equivalent of the National Vet College when they did the Acromegaly test. She has been on Lantus for 6 days, I hope to do a curve tomorrow as I will be at home all day and I will be speaking to my vet next Wednesday when she will review the dosage. I think I might have done a "fur shot" this morning and can't be sure she received any Lantus and her +3 is higher - should I just leave her until this evening's dose?

Thanks Phoebe for inviting me to the FB page, once I get my head around things I may well join.

thanks to you both
Suki & Crystal

 

Welcome Suki & Crystal -

Tight Regulation is a very good place to get info about Lantus; and the Acro FB group is also a good place to be. Many of us w/ Acro kitties had insulin resistant acros (little response to high doses are usually a good indication of that condition as well), and most of us experienced a breakthrough of that resistance through more aggressive dosing than normal diabetics

We have many members who have not had surgery or radiation, but that have lived considerably longer than your vet quoted you (I read the same thing 3 yrs ago). In addition, one of our FB members who lives in the UK had her kitty in a Pasireotide drug trial at RVC, and it was successful - Betty went OTJ! Perhaps that would be an option for you.

Your kitty is young enough that you probably can have many years with her... so don't write her off just yet!

Lu-Ann

 

Thanks Lu-Ann for your encouraging comments, it's great to hear that acro is not always an immediate death sentence and there have been some success stories. I live in SW France (an English ex-pat) and I don't think generally there is anywhere near the amount of info about acro here, much less than the UK and US unfortunately (the French are not particularly a nation of cat lovers, apart from the English who all have large cat families, I have 3 other non sugar kitties). My vet really hasn't offered me much of a lifeline although she is very sympathic and will do her best in her limited knowledge for Crystal, but I think I will listen and take advice from the forum. I just feel that the deterioration in Crystal in the last six months has been quite rapid but with a bit of luck and some prayers we can give her some quality life. Once I've got my PC sorted (Friday) I hope to get my SS and profile complete and get in the fray on the TR forum. Thanks again, I really appreciate hearing some good news.

Suki & Crystal

 

Hi Suki & Crystal.
I am glad to see that Lu-Ann and Phoebe posted to you.
If you prefer, you can apply directly to the closed Facebook group where we have 147 members with cats having several types of insulin resistance conditions, like acromegaly, IAA, cushings, and a few unknown. The members include people near you, as well as in the UK and Turkey.
While many of the members also have accounts here, the majority post on the Facebook group due to the sensitivity of the topics.
A great many have gone for SRT, some have done trials, and there's an upcoming surgery for one member's cat.
There are some acro owners who post on this board.
You are welcome to join our Feline Acromegaly group.
https://www.facebook.com/groups/acromegaly/

Gayle

 

Hi Suki,

You've got quite a bit of information already in your tests. Great job! I'd go ahead and increase Crystal's dose by 0.5u. The majority of her nadirs (the low point of the cycle) are over 300. If that seems too large of an increase to you, you could increase by 0.25u, but if she were mine, I would definitely increase. You don't want to let her sit too long at a dose that isn't getting her into healthy numbers because she will develop Glucose Toxicity, which just means that her body will begin to accept over 300 as the normal range and it will take even more insulin to get her to come down.

One difference from your previous insulin is that Lantus dosing is based upon how LOW the dose causes her blood sugar to go. So we look at those lows - in her case almost everything is in the 300's.

From the Rand/Roomp Dosing Protocol

Let me know if you decide you want help with the spreadsheet. Hope you've had a great week!

 

Hi Julie

Thanks for that, I'm doing a curve today with Crystal so I should have a good idea of what happens on a daily basis. I've managed some sort of spreadsheet, although it's not completely to date, spent all day yesterday with a friend sorting out PC but am having major problems with Google but I will have her results online tomorrow. While I was out yesterday the vet phoned and left a message with hubby that Crystal's agrocmegaly test results "were off the scale"!! which doesn't sound great (I had asked her to confirm the exact number, rather than just saying it was positive). Unfortunately, we missed each other yesterday and I've just phoned now and she not in the surgery until Wednesday. In the meantime I think I'll go with a 0.5 increase from tomorrow, after the curve. I'll post on the TR forum over the weekend if you want to check my SS then that would be great.

Gayle, sorry for the delay in getting back to you but many thanks for your kind offer to join the FB forum. I'm new to using Lantus so I think I'll leave joining for a week or so until I get to grips with everything, so much to absorb, but I really appreciate all the support from everyone, I don't know what I would have done without the FDMB.

Suki & Crystal

 

I don't know what off the scale means. An actual test number would be helpful. Cats need however much insulin they need. Punkin 's igf-1 was in the 280s and at that point he was probably getting about 9 units of insulin per shot. So Crystal's dose seems small to be considered off the scale. Can you ask the vet's office to send you a copy of the test results. I kept a folder of all of that for Punkin. I suspect you'll find that's very helpful.

Looking forward to seeing your curve results later today.

By the way, where in France are you? I studied French from 7th grade on. I've always loved your country.

 

Hi Julie

Thanks for your post. My vet actually phoned me at home yesterday to confirm the acgomegaly result being "off the scale". Apparently the vet collage use a max scale of 1200 to test for lgf-1 which she said would registrar somebody being tested who weighed over 300k and Crystal's result couldn't be measured because it exceeded 1200! I'm really concerned now about how fast her deterioration might be, unfortunately neither the vet nor the college had any advice as to how to proceed but she did confirm your recommendation to increase to 3.5u BID, which I've started as from this morning. The test was done whilst she was still on Coninsulin (8u BID) and it was the college who recommended the dose of 3u BID Lantus considering Crysta''s weight and age. The vet thinks this is quite a high dose(?) they have another cat using Lantus and it's only on 2.5. I'm actually going to post the above on the Lantus TR forum later today/tomorrow (I have to go out soon for most of the day) so that it gets a wider audience. My SS is up to date after the curve if you want to have a look, but I need to work on my profile and also add something into my signature box before I do the TR post. Crystal was very lethegic yesterday, just sleeping all the time between tests and small feeds but looks a little better today and came for a walk around the garden with me and had a big cuddle.

We live in the Charente-Maritime just between La Rochelle on the coast to the north and Bordeaux to the south, about an hour to either. Lovely area, half an hour from the Atlantic coast and very happy here. Retired out here 11 years ago after working in London for 35 years. Unfortunately still struggling with the language but at least my vet speaks perfect English which is a great help. We have 3 other French moggies (Tiggy, Poppy and Chloe) and a black long haired Griffon X dog called Bollinger.

Anyway, look for my post on the TR forum tomorrow. Have a good weekend, hugs to you and Punkin.

Suki & Crystal

 

Hello Julie

me again, I'm really sorry I hadn't realised Punkin had passed away, when I read you mail again I saw it. My head just isn't in the right place at the moment, I'm sorry if I inadvertently upset you. What a handsome boy he was, gingers are my favorites, I've had two in the past (Oliver and Charlie) and both of them have been extremely loving but very extrovert and definately the top cat in the house. All our cats are female now in the hope that they will be more stay-at-home types and not wander off out of the safety of the garden but they still venture down the road to check out the neighbours. Anyway, just wanted to apologise for my oversight.

best regards
Suki & Crystal

 

don't think twice, suki! how would you know? Punkin passed away in May 2013 - but not from acromegaly or diabetes. He lived 2.5 years after his diabetes diagnosis. We did have the SRT (radiation) done for him. I miss him like crazy - he was an extraordinary cat! Some are extra-special like that. cat_pet_icon

The UK uses a different scale for measuring IGF-1 than we use in N. America. I've seen results that were over 2000, so that must be the same test scale you're encountering in France.

In any case, the number of the IGF-1 tells some but isn't essential. Basically, you're focused on the blood sugar tests and getting those reduced below renal threshold to protect her body from the high blood sugar. The output from the tumor can wax and wane, so insulin levels just get adjusted as/if it changes.

We don't even suggest people get their cats tested for one of the high dose conditions (acromegaly, insulin autoantibodies, cushing's disease) until they pass about 6 units per shot. At 8u with the Caninsulin, we'd also have suggested it. Some cats just take more than others, even if they don't have a high dose condition. Obesity increases insulin resistance, infections (dental infections are somewhat common in diabetic cats), pancreatitis, eating dry food - all of those can increase the dose needs significantly. You'll see a wide variety of doses on the TR forum, even in the cats that don't have acromegaly - from 0.1u to 6u is common. We have cats with high dose conditions that get from small doses (I'd call 3 units just average for a non-high dose cat) to 31u. Some cats with acromegaly get much higher doses than that.

The important thing is that since you are testing at home, you can assess the blood sugar and adjust Crystal's dose appropriately. I would give the 3.5u four cycles (a cycle is the 12 hours in between shots) and then re-assess if it's bringing her down far enough. Typically if a cat need 8u on another insulin, they would likely need something close to that on Lantus as well. We do have a weight-based formula for starting a cat's dose on Lantus, but when a cat is moving from another insulin, that amount is taken into account. I'm just concerned that Crystal not sit too long in high numbers because she's got a too-low starting dose on the Lantus.

Something's not quite right on her spreadsheet. It should be color-coded. I hate to bring that up, but the color coding is, well, i would call it an essential tool. Can I give you a hand with fixing it?

I haven't been to your area, but i'm sure that was a wonderful place to retire! The closest I've been is to both Quimper and the Loire valley. In 2010 my husband and I spent a week in St. Remy and the surrounding area - talk about beautiful! I feel the pull to go back already.

See you over on TR when you post.

 

Hi Julie

Thanks a lot for your advice, I really appreciate it. I know just what you mean about the extra-special cats that come into your life, Crystal is one of them and we have a special bond so it's just heartbreaking to see her not well. Anyway, Just a quick line (we have friends coming soon) but did you look on her SS under "World" (I notice that I seem to have 2 versions, one with no colour and lots of "0"'s) but I have colour-coded her BG levels on the other version, but I don't think it's the default version. I had one hell of a job with the SS, not easy at all and my techy friend was completely lost but managed to cobble something together but not per instructions. Please can let me know if you can read it properly with the colours? She seems to be in "the pink" all the time with 2 lapses into yellow but I don't know what made it go lower.

I've read something about the acromegaly levels and think the 1200 quoted in France is a lot lower for the US acrocats, which I was comparing it with, would this be the case? I don't have an actual copy of the result, just what the vet told me over the phone. Also, what are the best syringes to use for 0.5 units? the ones I have are for Lantus but with increases only of 1u so I'm guessing between the 3 and 4 marks to get 3.5, which is obviously a bit hit and miss. Went into the pharmacy today but they didn't have any in stock but have about 100 to choose from on their list so will go back on Monday when I know the right ones to order.

We love the Loire Valley, spent many a happy holiday there but we moved further south as the weather is generally better here and hubby is a bit of a lizard and likes the heat (not for me though, I spend most of my time in the shade).

If you can just drop me a quick line about the colour coding before I post on the TR forum that would be great.
Thanks again
Suki & Crystal

 

The World version is set up so that you enter mmol/L on the one page and a formula does the math to present it on the other page as mg/dL.

Then, conditional formatting colors the cells based on the ranges of values. If you have a cell that is working and another that is not, you can use the paint roller icon to fix the formatting.

Click on the working cell that is color coded
Click on the paint roller icon
Click on the non-working cell

And that should do it.

 

Hi again Suki. I can read your SS on the World tab, but I "speak" World numbers as that's what we use in Canada. For some reason, the colour coding on the US version of the spreadsheet seems broken.

In Canada, we use the BD syringes as that's pretty much all that's available. I know that's what they use in a lot of Europe too. If that's the case, I think you want the BD Ultrafine II with 1/2 unit markings. It's what children would use for insulin syringes.

As for the acromegaly test numbers, we had another member here whose kitty also scored above the scale in the American range. When I talked to the internal medicine experts at Colorado State University, they said that the IGF-1 number the test measures has no correlation to the size of the tumor. Neko's number was 440 on the scale here, so a lot higher than Punkin's, but her tumor was considered quite small when measured on the CT scan.

 

Don't worry about fixing it before you post over on TR. Just go ahead and start a new thread there.

 

Will be posting later today, just off to the doctor again as I had a bad fall yesterday on a wet floor and twisted my ankle and can hardly walk now and also cut my hand to ribbons.... Crytal's looking well today though so that's some good news.
Suki & Crystal

 

FYI to all, the Facebook group being mentioned in this thread is a private group and is not affiliated with FDMB.