From the “crap no one ever tells you about with diabetes” file, comes:
Dissect the word with me for a moment:
Lipo — OK, that sounds like weight loss surgery.
Hyper — Yes, we often are. How else could we juggle work, kids, exercise, myriad lab tests and doctor’s appointments, non-stop carb-counting and dosing adjustments, etc., etc. and still do our taxes?
Trophy — Do I get one, for putting up with all this diabetes crap?
Just because Wikipedia brushes this off as “common” and “minor,” doesn’t mean that at some point, it won’t be the biggest thorn in your side (pun intended!) with diabetes. I personally have had ongoing skin issues with the adhesives for diabetes devices, and now that I’m regularly wearing both the OmniPod and new Dexcom sensor again, I am feeling like Public Pin Cushion No. 1! I’m not sure which is less sexy: these two chunks of plastic hanging off my body, or the black-and-blue-and-yellow track marks I now sport all over from where said chunks were formerly stuck:
It’s really hard to find good information on lipohypertrophy, even from the vendors whose products clearly cause it regularly.
And how come it seems like so few patients are ever warned about skin issues at all, but just have to learn the hard way (pun again!) when scar tissue “rears its ugly head”? Then suddenly, it seems like we’ve got no good sites left… everything’s lumpy and bruised, and our insulin absorption goes all to hell. My recent frustration, via twitter:
To be fair, Roche has been the most proactive vendor on this topic. A few years ago, they even kicked off a “National Infusion Site Awareness Week” initiative to raise awareness about the importance of choosing your sites carefully. They shipped out a box of stuff to a bunch of bloggers that I still have sitting on my self — lapel buttons, a boatload of temporary tattoos for infusion sites (which are cute, but I wear the OmniPod so no use to me), and a desk calendar to encourage us to keep written records of our site rotations. This was a valiant effort, I suppose, although it seemed to peter out after 2011. Roche spokesperson Rob Muller confirms that the company has dropped the campaign, although he wasn’t sure why.
Luckily, on the Accu-Chek website you can still access something called “The Professionals Pocket Guide to Infusion Site Management,” available in PDF. It’s not all that pocket-ish at 41 pages, but it does include a good list of skin prep wipes, adhesive removal wipes, and lots of tips about rotating your sites. I’m sure Roche will indulge me in reprinting their visual guide to ideal rotation patterns:
They state that new sites should be at least: “2 inches (5 cm) away from a previous site, as well as 2 inches (5 cm) away from the belly button.” OK, so I might be a bit sloppy on this. But just look at those images again — like a geometry assignment for those of us math idiots already stumbling every day over carb estimations and correction factors. Talk about living up to being the ideal patient! I already use a ballpoint pen on my belly to mark the “inside spot” that shouldn’t be slathered with SkinTac before my G4 sensor goes on (you gotta keep the point of insertion adhesive-free). I’m not about to start drawing zigzags and criss-crosses in permanent ink to remember where my pump last went!
While it’s a great resource for general info, I shudder to think of endos and CDEs who might download this guidebook and do some finger-waving at their patients for not executing correctly.
To me, the most important bit in this booklet is on page 29, the part about preventing infection. Man, I wish I’d red that stuff before my first site infection hit!
It’s good to see that community members are now producing some of their own ideas for site rotation reminders, such as the D-Mom we recently featured, Mary Anne DeZure and her “Time for Change” fridge magnet. This trumps writing it down in a desk calendar, but doesn’t exactly otherwise change your life much.
What I REALLY want to know — as I assume all us PWDs do — is how to counteract this scar tissue problem once it occurs. Is there any way to rejuvenate the skin? That doesn’t involve hundreds of dollars in spa treatments?
Googling it, treatment suggestions seem to include magnet therapy and accupuncture or accupressure — or in extreme cases, a 2009 journal article suggests: “severe lipohypertrophy can be treated with liposuction surgery.” Ewww, no thank you! Not to mention the battle over insurance coverage for that. Good luck!
So I queried Virginia Valentine, CDE and insulin pump expert, who’s now on the medical advisory board for Tandem. She makes a differentiation between garden-variety scar tissue and this diabetes-related condition:
“Scar tissue is structurally different from the skin it replaces and doesn’t have elasticity like normal skin and will not work for infusion set placement. This is just one of the reasons to avoid having an abscess that requires surgical debridement (aka precision laser removal).
“What most people think is scar tissue is actually insulin lipohypertrophy — localized hypertrophy of subcutaneous fat at insulin injection sites, caused by the lipogenic effect of insulin. If you have a lump or thickened area, best treatment is to leave it alone. That is why all the info about site rotation. Most people over time find a few areas they are comfortable with, either for injection or pump sites, and end up with some hypertrophy. Usually hypertrophic areas after a few weeks get better, if it is really thickened maybe a few months. I have some patients who go on a pump vacation for a few months just to give areas a rest. This is not usually a problem in us folks with type 2 diabetes because we have more tummy to work with.”
(I don’t know about that last statement — you be the judge)
But OK, we just need to let the affected area rest for a while. Thanks to Virginia for giving us the straight talk here. But this won’t be easy for me, wondering where the heck am I going to stick my OmniPod and Dexcom G4 now that all the available “real estate” I have looks somewhat lipohypertrophic?!
To all the other medtech vendors who make stuff that sticks into patients’ bodies, we could use some help here! See above tweet.
** UPDATE: 3/14/13 at 3:45pm **
Hey All, Mike just identified something that might be of great help avoiding liperhypertophy: Tartoos, patent-pending temporary tattoos that help you keep track of injection sites – wow!
See http://insulinnation.com/a-tattoo-even-mom-will-love/#.UUJKHTf5XHV
Leaving it alone is my best suggestion, too. For my first ten years, I used only a tiny area on each arm and thigh, with each of my four daily injections in a set location (dinner, right arm, lunch left arm, etc). I developed large lumps there. After I moved to a pump, those lumps disappeared. Took a year or more perhaps. Of course, then I did the same thing to my lower abdomen for 8 years on a pump! It took nearly two years of avoiding my abdomen before I could infuse there again.
Hi Amy! I feel you – thanks for raising the point that adding geometry to all the algebra we do every day makes diabetes even more complicated. I definitely felt like a lazy patient when I worked on the infusion site guidelines for AADE a few years ago.
On the point re leaving a spot free of Skin Tac, the other week at the ATTD Bruce Buckingham showed some data from the Dexcom G4 pediatric study that indicated no problems from either Mastisol or Skin Tac being applied to the skin before sensor insertion, sort of poking a hole in the doughnut advice (so to speak). Just thought you might like to know that. Also, at ATTD Roche shared some new info on DiaPort, which has been shown to be a good thing for people with severe lipohypertrophy. Lesley Jordan has posted about hers here: http://www.insulin-pumpers.org.uk/diaport/
Oh dear! I was lumpy and thick before I ever started injecting insulin – I hope I can recognize lipohypertrophy when it rears it’s lumpy head. Honestly though, it’s helpful to hear other’s frustration about life as a pincushion. Organizing my Dexcom and my OmniPod sites and waiting for skin to heal: just one more challenge from the gift that keeps on giving.
But kudos to Gary Scheiner, who gave me clear instructions for rotating sites both when I was on MDI and now that I’m pumping.
I feel for you , no pun intended. Did you ever hear about the non invasive glucowatch that got shelved so that all the blood sucking test strip manufacturers could keep on the draw. Thank you for publisizing the pain that you deal with diabetes. The world need to be aware! My son has type 1 for over 25 years. Stay strong and Bless your efforts.
Cecile, a friend of mine was in a trial for the Glucowatches and they HURT every time that they zapped you to test your BG, and left burn welts.
Kerri at SUM uses her thigh for her dex and my 10 yr old always liked her arms for her pod. Start trying arms and legs. BTW, your tummy looks awesome.
Remember the Macarena with the do this with your right and then with your left?
I do the Infusion Set Macarena every 3 days (I wanted to call it iMac, but that’s been taken…)
Lower right side of belly
Lower left side of belly
Lower right side of back
Lower left side of back
Right buttocks (as far back as I can reach)
Left Buttocks
Then, I go back to the belly, but much higher, or maybe in the middle area, trying to keep at least 2 inches from the first spot I used. This gives me about 2 weeks before I get back to the same general body area.
While this works pretty well, I do have some lipohypertrophic areas, especially on my buttocks and lower belly, so I am trying to expand the areas I go to. Also, not on CGM or the Pod, so I have more real estate to work with. (Lipohypertrophic areas are one of the reasons why I have been holding off on a CGM.)
Great post! Thanks! I also have what I believe is called lipoatrophy – dent marks caused by injections of insulin repeatedly so that my skin is sunken in and is useless for infusion sites. These are located in certain places on my abdomen, and also on my thighs. Wish someone would devise a way for us Type I’s to grown new fatty tissue under our skin!
Thanks Guys. I wanted to acknowledge the opposite condition, lipoatrophy, which is “essentially the melting away of fat tissue at injection or infusion sites” — eww!
Mike suffers from this and wanted me to include it, but I don’t have any personal experience… Wil did mention it in a recent Ask D’Mine:
http://www.diabetesmine.com/2012/01/ask-dmine-lipoatrophic-diabetes-and-much-ado-about-tea.html
Another yuck diabetes!
Yes, I have that lipoatrophy mostly on my abdomen site areas… not the best site rotator as I could be, so that’s largely to blame. Although, I just heard recently someone say that they experienced this and switched insulin, and that made all the difference – may have to try that myself! Usually, I just avoid that site for a brief period (maybe a few site change cycles) and it mostly clears up and returns to normal. I did use the Roche temp tattoos up until taking a pump hiatus a year or so ago, and overall I think they’re a great creative idea that I’m sorry to hear went away.
I just started a thread on CWD to post pics of different site areas so maybe in a few days we’ll have a nice collection. DD only likes tummy sites for pump sites and sensor and only liked arms for pods. I think it might help her, age 10, to see other people’s sites on different body parts.
Awesome, Denise, can you share the link here for our readers?
Skin tac is great to help with the adhesion, Silesse and Cavilon are great skin barriers so you do not get the rash.
Have to order them on line, Silesse is a bit cheaper.
Good luck
Sure, here’s the link to the thread.
http://forums.childrenwithdiabetes.com/showthread.php?t=72794
the site is childrenwithdiabetes
Over here the term lipodystrofia is used alot more, it is a term that refers to an uneven spreading of fat storage in the body, either less or more. It seems to me like it’s a term that encompasses both lipoatrophy and lipohypertrophy. And consisdering cause and solution are largely the same, that might be why they use it.
First few years I had Diabetes every box of needles I got had a leaflet warning about lipodystrofia, they made great bookmarkers. Last few months they haven’t been in the boxes however, instead theres a leaflet advertizing their other needles. Which does not seem an improvement to me.
I inject using flexpens, but you’re still suceptible. I used to have this go-to injection site for when I shot in public, like lunch at work. It was this convenient location where I only needed to lift my shirt a little, and not move alot. Leaving that site alone for a few weeks solved it.
My endo and diabetes nurse always check my stomach for lypodistrophia as well during our appointments, supposedly they notice the difference easier as I see my stomach every day so the gradual change will be less obvious to me. I always assumed this was standard.
There have been some reports and studies of using Verapamil cream to help users with lipohypotrophy but its expensive and usually not covered off label…
Theres also some research by Echo Theraputics/Sonosite in using Sonoprep and its replacement to help perforate areas with lipohypotrophy issues as a prep for infusion sites… (in addition to their patch CGMS)
Think theres a reason to consider microneedle arrays for infusion sets as well as other technologies to spread insulin out over a larger area to reduce these kinds of issues…
Ideally wed skip the whole subq thing and go with Diaport if they can get the kinks/clogging issue resolved and put through the FDA again…
-J
[...] • What is Lipohypertrophy? [...]
I worry about this with my daughter. She doesn’t have enough fat on her stomach or legs for injections, so we use the back of her arms for Novolog and her buttocks for Lantus. So far so good, but it would be nice if she would get a little fat on her body for injections. I have plenty she could have! LOL.
I know about this condition I have seen it in other diabetics, the lumps can get quite large, it is important that you do not inject in the same place, and rotate injection sites, if you notice
any lumps stop injecting in that area, they normally go away after a while I have had one small one, I have heard different
people say, that altering injection sites can alter the effectiveness of insullin, I did my own research and it seems to
work the same in any site in the stomach area, some people
due inject in legs and bottom area, but personally I do not do this, I have
had any problems since using a rotating method on the stomach. The diagram is good I will try this.
[...] you’re tired of scar-tissue build up, irritation, and lipohypertrophy from daily insulin injections in life with diabetes, (or you’re the parent of a newly [...]
[...] you’re tired of scar-tissue build up, irritation, and lipohypertrophy from daily insulin injections in life with diabetes, (or you’re the parent of a newly [...]