This might be a long shot, but does anyone else who's on HRT and has diabetes go through a lot of... insulin sensitivity, I guess is the word?
I started my testosterone again last Thursday, and it seems I've been going low at least once a day, and I've been dropping fast. I've been on testosterone for almost a year before that, earlier this year, but I stopped because I was worried it was interfering with another medicine I was taking.
I'm using the Dexcom G6, and the InPen app (thiugh I'm using manual pens currently, and will be using the vial and syringes after that).
So my problems are, roughly:
Going low, and then continuing to drop while I'm eating and insulin is on board, but then once my number comes up, it goes up really fast....
but then, sometimes even if I eat and don't treat, it still goes really high, and that's more stressful to me... any advice would be welcome if you have it :) and I should email my doctor about this
"Get a CGM, they said! It'll get you to be in range more, they said!" 🙄🙄🙄
Image description: 4 screenshots of 24-hour time frames of the Dexcom G6 app. 3 of the 4 screenshots have at least 3 hours each where the BG is too high, almost at the 400 level.
My blood sugars yesterday, May 8th (putting here for reference):
1:30 AM: 60 mg/dL
6 AM: 59 mg/dL
9:15 AM, before breakfast: 159 mg/dL
*treated breakfast*
11:36 AM: 57 mg/dL
2:20 PM: 57 mg/dL
9:49 PM, before late-night dinner: 129 mg/dL
I ate (what I thought was) at least 20 g every time I went low, so why did I keep going low?
Also, I had pizza for dinner, and it didn't mess up my blood sugars this time, but I did feel very sick for a short time in the middle of the night.
Blood sugars today: 164, then 197, then 98, then 64 an hour ago, and now 61 half an hour ago
I guess it's a good thing I have my endocrine appt tomorrow. I still really want to switch back to my old doctor, who was really kind, but it might be too much of a hassle overall... IDK.
Anyways. Either way, I have no idea why I've been going low so much yesterday. and today 🫥
The stage that they're at is animal testing but it sounds like it's been successful in mouse and primate models.
My understanding: The way autoimmune diseases usually seem to work* is the immune system is "flagging" the wrong thing as harmful/not needed and destroying it. The typical treatments for autoimmune diseases are just tamping the entire immune system down so it can't destroy anything, which leaves a person vulnerable to infection.
The newer method is basically "tricking" the body using a method that... the human body already came up with. Cells flagging the wrong thing apparently happens all the time, so there are multiple defenses against immune disease, and one of them is in the liver. So scientists figured out a way to tell the body "hey, you flagged this wrong" and sent it to the liver and the liver/body recognized this signal.
There is still a lot of work to be done and it sounds like this isn't foolproof (ie: what if the liver is whats broken? unsure, and what if the immune system flags things wrong again?) but this is literally so amazing. i was tearing up reading it, and i hope that everything goes well in clinical trials.
*theres like a lot medical science doesnt know about the immune system
Thank you for this explanation/synthesis of the article! It's important for us to understand that they're still in early development and testing of these methods, but also that they've seen it work in mice and primates (rather than just petri dishes of human cells). I hope this goes well.
Hi! I'm a microbiologist and I've done work in academia, pharma, and clinical trials.
So the most exciting thing about this article is the last paragraph tbh (working on getting the actual paper, it's not up on sci-hub yet).
The company mentioned, Anokion, has four registered clinical trials for both Celiac and MS patients. The trial for Celiac just submitted data from their phase 1 trial (meaning there's good data it is safe) and are recruiting for a Phase 1/2 trial (meaning they are now testing efficacy). After that, the big hurdle is phase 3, which looks at whether or not it is better than a current treatment. The projected completion date is spring 2025. They are also preparing for a Phase 2 trial but are not yet recruiting.
The phase 1 MS trial is currently active, estimated completion in summer 2024.
I checked the company website and it looks like they are in the process of submitting an investigational new drug (IND) application for Type 1 diabetes. This is the first step to starting clinical safety and efficacy trials.
Now clinical trials can get delayed for a variety of reasons, but this is a really good sign! It's way further along than I initially thought when seeing the news. If the treatment does well, we could see new drugs on the market for Celiacs as early at 2030ish and MS as early as 2035.
Are my numbers high, or does this carb-unspecified food have way more carbs than I think it does, or do I just feel stressed and high about it now because I'm worried about it, or do I need to give another 2 units, or will giving those 2 units make me go low in an hour, or--
One of the most annoying things about diabetes is that: when I don’t know how much carb something has (especially if it’s homemade! And I can’t just ask), it’s really hard for me to tell if I’m actually underestimating the carbs, or if I’m worrying about the carb and therefore just being stressed about it and raising my BGs
(Or a secret third option: I actually treated the food right the first time, and by treating more, I’m unintentionally going low)
Being in the diabetes community is really hard for me.
Most of the time, posting and interacting with other diabetes content feels like… shared trauma, I guess? Like, it feels like people almost always post about the bad things, because it’s a chronic illness that’s exhausting, and never stops, and probably is never getting ‘better’ (in the sense of not being ‘sick’ anymore), and there’s always something wrong, and people die somewhat often from not being able to afford insulin because of price gouging and capitalism and classism and….
A lot of people on diabetes tumblr are like, mutuals and support each other and really respond to each other’s posts. Which is very kind, and an act of solidarity, I think.
But it also still feels like a lot of energy for me. It feels exhausting to just think about how fucking tiring my life is all the time. Even when my numbers are good. Even when I’m able to be doing a good job.
It’s still so tiring to think about how the other shoe could drop literally anytime.
I personally have a lot of trauma around diabetes, being diagnosed young and thinking I would die soon for a long time. It’s taken a long, long time to be less dissociated and actually feel my body cues and trust that I’m going to keep living.
But at the same time, I hate inspiration porn, and those diabetics who flaunt that they “can do anything they put their mind to, just like anyone else!” and who brag that they don’t eat sugar.
I feel like I’ve been needing to say this for a long time. My diabetes blog is somewhat inactive, and my posts are, more often than not, ‘vent’ type posts or posts about the negative parts of diabetes.
But at the same time, my diabetes is better than it’s ever been, so I’m proud of myself for that. And I guess on that level, it’s not as big of ‘a thing’ for me?
But I feel bad for talking about it, even though it’s taken a lot to get there.
I just… I don’t know.
The T1D community on here feels tiring, and it makes me feel worn out to think about how exhausted and burnt out we all are, more often than not. But the thought of deleting this blog is a little bit sad. (But at the same time, what’s the point of keeping this blog around if it’s just exhausting to me to think about and remind me how bitter about my diabetes?)
Do you feel like you relate enough to the diabetes community that you’re glad to have a community around it? (Or, put another way, do you feel happy about and connected to the greater diabetes community despite the whole chronic illness Bad thing?)
Yeah, I’m happy to have a community around it
No, it feels stressful or negative
It’s complicated (put in tags)
I feel a part of the community sometimes but mostly I don’t
I don’t relate to the community but do see other people’s diabetes vent posts
It feels like solidarity but in a sense of shared bad experiences?
I don’t feel like diabetes is a big part of my identities
Once again thinking about all the things that go into diabetes as a chronic illness that I’m always thinking about:
Do I have my glucometer with me? If I don’t, where is it? Do I have a bag to carry all of my stuff in? Do I have enough carbs in that bag in case I go low a couple times, just in case? Do I have gum or something non-carby to chew on in the meantime if my numbers are high and I want to eat? When is the last time I gave insulin? Is my number high because I didn’t do a blood sugar in the middle of the night? Do I have a water bottle if I’m really high? Did I make sure to give insulin this morning? If I didn’t, how long until I start feeling it? Did I remember to bring my extra test strips with me? Did I remember to bring my extra insulin with me? If I didn’t, what’s the likelihood I could save my insulin for later if I really need to, and just be high and brain-foggy in the meantime? If my pen needle is bloody, do I have more with me? Am I so stressed today that it’ll affect my numbers? If I didn’t bring my long-acting insulin on the trip with me, how much extra insulin do I need to give per meal to even it out so I’m not high for [number of] days? Did I remember to set an alarm for doing a blood sugar again? If we go out to eat with food I don’t know the carb amounts of, will I be able to estimate correctly? If I start eating in public because I’m low, will I be coherent enough to explain what’s going on? If it’s really an emergency and I’m out of test strips/insulin/etc, do I have enough money and resources to buy some out of pocket? Am I tired because it’s the afternoon and I worked today, or because I’m low? Am I overwhelmed because there’s a lot going on, or because I’m high, or because I’m low? Am I emotional because I’m tired, or because I’m low, or because I’m high? Am I overreacting? Am I sure I gave enough insulin for everything? Am I sure I’m doing this right?
Wild how sometimes carb stops the brain fog magically after like 10 minutes and then other times it causes ir [brainfog and being crabby] for like. 2–6 hours.
Like I can’t even say “I’m allergic to carbs/don’t eat carbs” etc because 1. Carbs are amazing and make my life so much better and I’m glad I (can) eat them, 1.5. So many more foods have carb than everyone thinks, 2. That’s not even true like a lot of the time, and 3. Non-diabetic people mostly have no concept of like, “sometimes this thing helps and other times it is VERY BAD for me” they just hear “it is VERY BAD [for me]”
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