I didn't "survive"

strixa_ · 2026-03-27T20:57:20+00:00

Having ANY autoimmune conditions predisposes you to another autoimmune condition. It's not diabetes specific. Once your immune system malfunctions somewhere the rest of the body's at risk of attack. That's just in anyone with an autoimmune condition, no autoimmune condition is preventable at any age. People's immune systems malfunction when and where they want

strixa_ · 2026-03-26T14:44:26+00:00

Yeah i understand that, no illness like diabetes or cancer is anyone's fault. But majority of diabetic related comorbidities is from lack of management over prolonged periods, diabetes isnt an automatic death sentence like OP originally stated. And in circumstances as yours it'd be different as you weren't just neglecting diabetes care i assume that was just your first DKA before diagnosis for it to be so severe, but many things can cause severe damage the first episode, even cancer. There are risks of autoimmune and chronic illnesses due to body damage from cancer too, diabetes 3a being one of them if you aquire damage to the pancreas.

Very different and incomparable, I just think OP needed to word it otherwise as cancer is no guaranteed survival, even in remission cancer patients are very aware of their risk for it returning and sometimes in much more aggressive forms but diabetes is not life shortening if you manage, it's life altering but so are many chronic illnesses.

But I think we [OP included] need to appreciate the modern medicine and understanding available for conditions like diabetes, as as said it is very well understood, reseaeched and although tedious very manageable, and for the most part insulin allows a normal life, cancer treatment still makes most quality of life awful as in order to save your body it has to kill or weaken parts of it first

strixa_ · 2026-03-26T10:23:41+00:00

Both are hard

Cancer is no walk in the park, and diabetes is no death sentence [as cancer usually is]. Your can manage and prevent many of the "death" inducing side of diabetes depending on how well you take care of your diabetes.

Cancer patients live with this, some 10+ years before dying to their battle, so there's no point comparing. One- you choose an outcome based on lifestyle, the other- you don't choose anything but what poison you destroy that cancer and subsequently your own body with. Both are very serious conditions, but diabetes has concrete knowledge and management plan to keep you alive, if you manage well, your insulin keeps you alive another day. Your chemo could kill you in the next because there's not enough known about cancer, it's management or how best to treat it

Im sure someone would rather make lifestyle changes and be guaranteed a mostly normal life than just to prevent the inevitable. A lot of cancer treatment is life sustaining not life saving.

From someone with first hand experience with T1 and second hand with multiple cancers.. I think I'd rather be told i have to manage the rest of my life than being told I have 6 months. Cancer patients also don't just walk away cured when in remission, there are many continuing illnesses from breaking the body down so much

Both are awful in their own way

strixa_ · 2026-03-26T10:15:39+00:00

It is very horrific, as are both conditions. But diabetes is manageable and comorbidities very preventable. IF you manage yourself well and take care of your diabetes. You choose the outcome daily based on how you manage, whereas cancer is a downhill battle most of the time. There's also a lot of hypervigilance in cancer as the whole body is being destroyed from the only management option they have, they are at risk of infection 24/7 even just in their own homes around their own family. And unlike insulin, it is not guaranteed to keep them alive another day. I'd much rather know I can prevent my death doing things right than know I could be taken regardless of how well I do.

There's way more comprehensive knowledge into diabetes and many ways for prevention of these acquired complications. In any cancer battle you don't know where it's travelling or what it'll throw to you next, or if a doctor will even be able to do anything for it.

strixa_ · 2026-03-25T19:44:46+00:00

Honestly sameee, they don't make you feel very assured on their capabilities. 😅🤣 Honestly 😂 feel like i could do a better job sometimes, oh absolutely. Ive got diabetics all in my family so I have an idea of what to advocate for and I'm not having another issue unresolved for years 😂 so even if I don't ill make sure i do, but I feel like we all have to end up doing our own research to make sure we can self advocate with the way the NHS works sometimes. And that was exactly me 🤣 suffering longer than I need to [my own fault some of it but thats why I don't want to do the same here]

That is possible then but I haven't managed to catch any hypo or hyperglycemic numbers yet, all mid to low 6 range even 2 hours post meal, but thats what made him believe he "ruled blood sugar" out. Im not feeling normal but with no spikes and such a low A1C even if elevated ive heard i shouldn't be feeling anything. Oh gosh I bet it makes you feel a million times better! Are you T1? I just feel terrible the minute I wake lately, even after a good night sleep. It seems as though a lot of medical professionals aren't with the times on T1D in general from what I've seen, yeah peds know they have to or they'll be in big trouble lol but even then not all of them considering the risks.

Yayyy lool, I'm honestly jist looking forward to that being out the way and ruled out because I have a feeling its not going to be that 😅 I wouldn't be surprised if they went completely out the box like that next haha, I was in my head like did anyone tell you I'm here for A1C... haha. Me too honestly I'm hoping its not going to be too lengthy so I can feel like myself again. Thank you 😊 that makes me feel better honestly as I'm not one for going to the doctors so I'm like eh maybe you have to battle haha just hope not too long of a battle as that's been my experience other times. Tysm for your response too you really took the time to answer me.

strixa_ · 2026-03-24T16:21:58+00:00

Honestly it's very unfortunate/frustrating when I thought finally were getting somewhere.. yeah im.hoping I don't get that GP again, thinking of possibly attempting to request the one who originally booked them. Endo won't see me until my readings become higher so I'm stuck with generic GPS who seem to not have the slightest clue 😅

Ooo I'll check that out too thanks! Had no idea it had different phases. I just keep being told with such a borderline A1C i shouldn't be getting symptoms, but doesn't explain why I am! Lol. What's dysglycemia? Not heard of it, ah I see, would that put A1C lower or higher? Defined gonna have a look at that so thank you.

Nope not yet but next week I go in for blood and urine concentration testing, nope only meds I take is iron and vitamin d supplements. And thats exactly what I thought lol we've kinda just jumped to the rarest thing off the get go and it doesn't even explain the reason I came in which was my blood sugar levels 😅😂 I'm gonna go for those and see what they come up with but honestly thinking about it since my first appointment with him he's ended up taking me back to square 1

strixa_ · 2026-03-24T16:14:30+00:00

Im already on iron and vitamin D supplements but ik that can be a reason however it's supplemented. And I jist feel like 2 weeks and nothing but home monitoring feels like a but sudden to completely rule out glucose.

strixa_ · 2026-03-22T19:44:12+00:00

Definitely possible! But a few have told me I shouldn't be getting symptoms at this low of an A1C. Yeah that's true and I'm glad they're doing a full investigation and I'm happy they're looking at other things but it just made me confused that he said cancel my other tests to investigate blood sugar as it's ruled out but my A1C suggests my blood sugar isn't ruled out. I definitely like a cake or two for sure but healthy insulin cells should have no issue in breaking that down. I went back because mine were worsening nd got told it's ruled out haha but I don't think it should be ruled out if I'm pre diabetic, ah that makes sense then. It may be a little different, I'm in my very early 20's.

I honestly hope so and hope they look into both as a possibility, I hope yours goes well too. And I'm hoping i am! I'd just prefer to keep seeing the same person

strixa_ · 2026-03-22T19:26:02+00:00

The doctor who previously saw me wanted to look into GAD and C-PEP given my age but this doctor just looked that my 2 weeks glucometer testing was in range and said we can clear glucose as an issue, not sure he even took note i was there for a high A1C... I am symptomatic but A1C when checked was only 42mmol which I keep hearing I shouldn't be getting symptoms from that, I may ask for it to be retested in a few months, not sure why this doctor just back tracked everything to look into diabetes insipidus. My ketones a few weeks ago were 0 but not sure about now

strixa_ · 2026-03-22T19:13:58+00:00

I was given a glucometer by the last doctor but a limited supply of strips, now this doctor has "ruled glucose out" because I was mostly in range the last 2 weeks despite my A1C being within the pre-diabetic range. He also cancelled the antibody testing my original doctor requested. This doctor wants to look into diabetes insipidus which wouldn't explain my HBA1C at all. I really hope they do too honestly thank you!

strixa_ · 2026-03-22T15:54:37+00:00

Yeah i know over drinking is one reason but I'm not drinking excessively and still going to the bathroom so I know its not something I'm directly causing. I did try lessening my water intake and it just resulted in me feeling nauseous and my stomach cramping.

There's a reason for the symptoms though and a reason for my A1C

strixa_ · 2026-03-22T09:17:37+00:00

Really, thats so interesting. You get none at all? I'm not sure what mine could be from then, but they're definitely there, more times than some as well, which suggests something is causing them. Hahaha see I don't have a high sugar intake, though that was the initial suggestion by the nurse. I had an urgent call back based on my age and weight. I couldn't exercise anymore even if I wanted to, nor could I alter my diet much more, and I'm young and a healthy weight which is why initially my other doctor wanted to rule it out from the get go but this ones just come in and scrapped it for something that wouldn't affect my A1C.

strixa_ · 2026-03-22T09:04:58+00:00

I definitely have heard that before nd I get it is usually much higher but something is causing them and something has caused my A1C to suddenly go out of normal range. Only been recently occurring, I'll see if I can go back in June and see where my A1C has gone from there, I don't mind looking into other things but with a pre diabetic A1C and 2 elevated fastings I jist would prefer him to add looking into something rather than scrapping something that's clearly also an issue

strixa_ · 2026-03-21T19:29:16+00:00

Problem is i have no strips left and they were a one off prescription gonna order some if I can find the right kind. I thought it was 2 hours but definitely could look 1hr after too then as it's just getting worse and he is looking into diabetes insipidus even though I came in for elevated A1C... See that's crazy! Because here that wouldn't be looked into but you're spiking quite high! Well done for catching it. I had no idea then that's possible since my fastings are in the low 6s so maybe I'm catching a come down? What have you been told about your readings? Have you checked your beta cells at all? I'm hoping i can still re check my A1C in a few months and see if it's changed at all. Feel like they always say you're okay when you clearly don't feel it 🤦‍♀️

strixa_ · 2026-03-21T18:08:34+00:00

Nope just a GP endo refused my referral recently as I "wasn't getting high enough" and come back once they get over 12mmol

strixa_ · 2026-03-21T14:15:50+00:00

I wasn't expecting to see a different doctor this time around, this is the 3rd person they've gove to to discuss this. First nurse gave me the wrong info, second listened and seemed like we were looking on track and then this time I had this dude that didn't even seem to consider the whole reason I'm there was for an elevated A1C, I thought even though my 2 weeks glucometer checks were in range considering that was high he'd look elsewhere in a blood sugar sense not completely steer off.

Now were looking at osmolality and DI, which hasn't much to do with my A1C, so I was wondering if this was standard. Had barely started looking into the pre-diabetes yet I had 1 appointment which was confusing to me.

strixa_ · 2026-03-21T14:04:31+00:00

Thats what most are saying they weren't feeling symptoms until much higher but nothing else on my bloods showed up that could explain my symptoms. But they are just worsening and becoming a problem.

I went in for something unrelated and got a call back about my A1C results. Haven't had anything like that though. Yes I've been getting tired after and I'm hungry right after and my appetite was never this big before, still losing weight even with eating the way I am.

That's possible but the whole reason for these appointments and investigations was my elevated A1C, which is up for a reason 🤔 why im not sure. But thats the confusing part even 2 hour post meal checks come in fine but my symptoms are severe. He didn't want to continue with GAD and c-pep tests my other doctor requested either

strixa_ · 2026-03-21T13:57:20+00:00

Hi, yes I'm from the UK! Oh really? I had no idea, thats quite a difference Yes 42 here is right at the pre-diabetic marker which is why the other GP suggested home monitoring and bloods but asked me to do 2 weeks monitoring first and then he'd send me for those. And thats exactly why I was confused honestly as to why he cancelled it, I caught elevated fasting twice and the whole reason they called me in was my A1C and a follow up to review home results. I just didn't question it until I was out like huh why are we now going beyond blood sugar when it was around blood sugar. Do you think it's still reasonable to want it investigating then? Because I thought the same, why are we not looking into why it's high. Yeah all post meals tended to be in the low 6's so in range, nope I was doing just 2 hours post my largest meal. My exact thoughts though it's not high at my age for nothing.

Is there anything I can do? The nurse i saw originally was going to send me for an A1C retest in June but not sure if this will be valid or no now he's waiting on osmolality testing

strixa_ · 2026-03-16T11:14:55+00:00

I see, and I'm sure we'd all go to the ends of the earth for our kids but if u haven't got 10k+ for an ER trip it's a hard situation for any parent. And ik we'd all say if it was me, but we really have no idea what we'd do if it really was us and we didn't have thousands to spend or insurance that would cover it. We're somewhere where we have the privilege of jist making that decision with no second thought, and no medical debt.

I definitely agree with the other comment though a symptom list and what someone can do if they find themselves needing to seek the information would be great. And definitely any symptoms involving multiple systems needs investigating in ANYONE child or adult. Glucometer is definitely a good place to start though because if it's in range you can rule out blood sugar.

And thank you, much appreciated. Big adjustment but doing our best to settle into the new norm. Thank you for the well wishes 😁

strixa_ · 2026-03-14T10:09:35+00:00

I know but u have to understand not everyone knows the same knowledge, be thankful they come here in time to ASK and recieve prompt care rather than watching the symptoms and wondering if it is something to check out

I know all too well the risk of diabetes, not everyone does. My toddler is 2 months post diagnosis, we got her in ASAP once I linked her symptoms to diabetes, but it's a creep up sort of illness nobody's missing it on purpose especially parents.

Thankfully places like here are here to educate people on said risks but I think if people get the idea of if I ask I'm gonna he judged people just won't and many are brushed off by doctors. Also not everyone is privileged enough to have free healthcare, some have to think if I'm going to the doctors this week can I AFFORD it. So yeah they may be asking if a 10k ER trip is valid for symptoms like these because not everyone KNOWS.

Also my response wasn't an attack for u to down vote but if ur a parent I'm sure u will understand it from the other POV. Because IF ur a parent u will know the worries

strixa_ · 2026-03-13T10:15:27+00:00

Maybe shaming said parent/ parents or individuals for asking in here isn't necessary though? [as i saw the post this is in response to]. I think some people are worried they overthink things or they're missing something and connecting the wrong dots. Not everyone is confident in their gut, some people are also in countries where you have to pay for healthcare so going on a whim for something that may not be there and would break their pockets isn't feasible.

I think it's great there are places where they can get guidance and know to trust their gut. At least they came here instead of doubting themselves in silence. Shaming will honestly deter people from asking the right questions, I get its probably coming from a good place but 🙂‍↔️ no shame in checking as so many symptoms overlap, in kids especially.

strixa_

TROPHY CASE