General Lipodystrophy and T1D

I’m 52 yr old male, T1D for 45 yrs. My endocrinologist thinks I may have lipodystrophy - not the localized version which can be due to insulin injections. But instead, the general kind of lipodystrophy, which is an autoimmune disorder. I have very low fat on my body in most places, but not in others, like my spinal canal, my belly, and I now have gynocomastia. I have very high adn way out out range estrogen levels. My liver enzymes are skyrocketing and out or range, so it looks like I have liver disease and fat is growing there. My leptin levels are basically zero. My endo thinks I only have 4% body fat. Because of this, I can’t get Dexcom to last more than a few days before sensor fails. I tried a pump for a few years, but insulin sensitivity changed dramatically from Day 1 to Day 3 and eventually I had to stop. Endo says it probably didn’t work well because I have no fat at injection site. Apparently lipodystrophy is a very rare disease. I’m curious if anyone out there has T1D and this kind of lipodystrophy and if so, any advice you can give me?

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I think most type 1 have some sort of lipodystrophy. Maybe not a diagnosable condition like you have.
I get more fat where I inject. I stopped using my belly for that reason. I started to use my hips and butt because well I don’t have much fat there. It makes sense that our bodies react that way. That’s why rotation of sites is really important.
When I was younger and first diagnosed, I was ectomorphic. I had less than 5 percent body fat. But as I was using insulin, I was able to get to a healthy weight.
Then age got me gaining weight, just like everyone else. It’s a balancing act.
I can usually tell a type 1 body from a distance no matter how fit of unfit, there is a tell tale sign, not sure what it is exactly, but I think it is lipodystrophy related.

I’m pretty shocked by that claim. The only way I can tell if someone has Type 1 is if they have a visible piece of equipment — usually a Dexcom or an Omnipod. With Stelo and similar devices that way of identifying the tribe has gotten shakier but, anyway, using the equipment identifier method, we seem to have pretty various and ordinary bodies.
Unrelated, but I kind of feel unjustified resentment towards non-diabetics wearing CGMs. Completely irrational since their wearing them probably benefits us (eventually driving down prices because more production) but I guess I feel a slight stolen valor feeling. Totally dumb feeling but wanted to share.

Not to threadjack but I’ve posted on this before and I have the exact same feeling, including the part about it being unjustified and irrational and yet there it is. Partly it is the thing about it becoming a less reliable marker of membership in the tribe. I much prefer that term to “club,” and maybe that’s part of it. We share a pretty rare connection that is also a pretty deep one that “club” doesn’t really touch on. Hadn’t thought of “slight stolen valor feeling” until you used it but that describes it well. It’s a marker of a shared experience that they don’t actually share. My rational mind thinks, “Why shouldn’t people want to use this technology to know more about their health?” I can’t disagree. But it still bugs me on some level. People dabbling in something that’s literally deadly serious for me.

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I hope that it will bring prices down, but I just don’t know. If I didn’t need to wear. Cgm, there is no way I would wear one. It’s like of a fad with athletes now, not that it’s going to matter because what can you do if your sugar is 120? You have no meds.
I guess if it drops low, you can eat, but it’s probably not getting low enough to warrant any intervention, unless you are prediabetic or hypoglycemic.

I think the idea is more about general nutrition, seeing what foods you might want to avoid because insulin spikes are supposedly bad, that kinda thing. Fitness improvement rather than a medical thing, like we use them for. The OTC ones I’ve seen advertised are crap as far as actually basing any kind of intervention on them goes.

But back on the OT…

That whole hypertrophy thing scared me when I was first dx’d so I’ve always been religious about rotating sites. But this lipodystrophy seems like something else. I actually have a large fatty lipoma on my upper arm that came out of nowhere a few years ago, but I don’t think it’s T1 related. It’s not in a place where I ever inject or wear my infusion sets. Kinda ugly, but benign. Had an orthopedic surgeon look at it, said he could remove it but it’s involved with the radial nerve and I don’t want to take any chances (pretty serious guitar player) for something that’s essentially just esthetic. Anyway, I don’t think that’s related to the condition the OP is asking about, but maybe someone who knows more will weigh in.

Thanks all for the comments. There are many different lipodystrophy syndromes. One of them is related to injectable sites. This is NOT the lipodystrophy I am inquiring about. The kind I am wondering about is acquied generlized lipodystrophy (AGL). It is often diagnosed by checking for leptin in the blood. I have no leptin. It is also clinically diagnosed by observation. Many areas have no fat, blood veins show, etc. Metabolic complications are frequent with AGL and are often associated with autoimmune diseases, such as diabetes. This is what I have. It is very rare. I am building up insulin resistance, my endocrinologist said in a way it’s like I am developing T2D as well as having T1D. The treatment I will soon be starting is a medication called metreleptin. Due to the link with diabetes, I was hoping someone else would have this. I have never heard of it before, despite having T1D for so long and would love to hear someone else’s experience who has this.

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