I, (22F) was diagnosed with early type 1 at the beginning of December and was told that I would need at least a basal dose but still haven’t seen anyone about starting insulin yet.
I don’t see endo until the 27th, or my PCP until around the same time. I’ve tried going to the ER but the Doctor that
I'm locking this post because the information on this post is now being repeated and some of the information is wrong.
OP, do not go to Walmart and buy OTC insulin because you are more likely to injure yourself with the wrong dose and not understanding how to use it (which is WILDLY different from the modern insulins you will be using too). DO call your endo's office and tell the assistant on the phone that you are having peaks of 20mmol and you have no insulin whatsoever, that you are following an extremely low carb diet to try and stay in range but that you are having unpredictable fluctuations. It doesn't matter that your appointment isn't until the 27th, you are not in a position where waiting is optional.
Your medical team has failed you at every step of the way here. If nothing e
My god, what the fuck? I cannot stand how negligent medical care has gotten. Have they at least given you any nutritional counseling?
Diet and exercise might help but if your pancreas is being attacked and slowly killed off by antibodies you will need insulin therapy soon or face DKA. You should be focusing on protein heavy and low carb meals if possible. Also begin food diary if you can to determine which foods are causing spikes.
I’m wondering if you’re actually in honeymoon and so your pancreas is still naturally making insulin and therefore starting any type of basal could be dangerous.
You’ll find a lot of support here. I am a Momcreas (my child is T1) and am happy to message you directly if you want to talk more privately.
You will be ok but time to call and advocate for yo
Thankfully I’ve spoken with a diabetic educator who really helped me learn about diet and stuff and I also had very strong knowledge of diabetes management going into my diagnosis as my mother is also type 1. I’m trying super hard to eat low carb meals but even just a small amount of carbs can cause a spike. I’m also super worried about the nighttime lows.
If you're legitimately type 1 and taking no medication at all then you are not going to to have lows that will be problematic. Us T1 only get lows because the insulin we took kicked in faster than the carbs we ate or we took too much insulin for the carbs we ate . It sounds like you are still in the honeymoon period where your pancreas is still capable of making insulin but clearly not enough to cover carb intake. Eventually you're going to have to have insulin... period. Even if youre 100% carb free a T1 must have a certain amount just to stay alive.
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Unfortunately this isn’t an option in Canada and you require a prescription for insulin here
I buy insulin without a prescription all the time. I'm in Ontario.
Oh really?? I’ve always been told you can’t and I’m also in Ontario.
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Your post has been removed because it breaks our rules.
Rule 6: Do not give or request medical advice.
Giving medical advice or diagnosing someone is dangerous since we do not know the full medical situation of our members. It can be more dangerous to follow the wrong advice and diagnosis than it might be to do nothing at all and wait for a doctor to be available.
Please refer someone to a doctor instead of speculating on their situation where possible.
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Your post has been removed because it breaks our rules.
Rule 6: Do not give or request medical advice.
Giving medical advice or diagnosing someone is dangerous since we do not know the full medical situation of our members. It can be more dangerous to follow the wrong advice and diagnosis than it might be to do nothing at all and wait for a doctor to be available.
Please refer someone to a doctor instead of speculating on their situation where possible.
Do they require a prescription for ALL insulins... Or just the newer ones? Id call a pharmacy and ask.
Your post has been removed because it breaks our rules.
Rule 6: Do not give or request medical advice.
Giving medical advice or diagnosing someone is dangerous since we do not know the full medical situation of our members. It can be more dangerous to follow the wrong advice and diagnosis than it might be to do nothing at all and wait for a doctor to be available.
Please refer someone to a doctor instead of speculating on their situation where possible.
I would begin eating a protein heavy snack before bed. Think half PBJ type of food if this is happening regularly. The protein will cause enough of a spike to maybe get you through the evenings.
No J on that PB sandwich if you're a type 1 with no insulin, the bread would be enough carbs.
Can your mother give you some spare supplies?
This seems rly dangerous. When I was diagnosed in November, I started insulin the very next day. I’m 20, so we’re similarly aged. I would worry about DKA if you continue to live untreated
Dosent really seem like its their exact choice, if they cant see the required doctors until the 27th and the emergency doctors wont assist. Where can they turn to?
Your doctor is an idiot. If you don't want to report him get a new one. This is a matter of life and death.
Please go to the ER immediately. Do not leave until you see an endocrinologist who gets you on an insulin regiment
I’ve tried the ER twice now and both doctors have dismissed me because I “wasn’t in the 20’s”. The first time I went in my BG was 10.8mmol/L in triage and the doctor told me he wouldn’t do anything until I was in the 20’s. I told him to retest me as I could feel I was rising and instead he came back with discharge papers. I left the hospital and tested 23mmol/L at home.
Was this at the same or different hospitals?
Different hospitals
I wonder if they tested for ketones, found none, and then thought you could wait until you see the endocrinologist.
That’s what I’m wondering too. I did a urine sample but can’t see the results for it but tested at home and was fine. I’m wondering if maybe my doctor didn’t think it was super serious at the time but I feel like I’ve just been getting worse and worse every day since my diagnosis
Find a new doctor immediately. I was diagnosed at age 10. Lab work on a Tuesday, they called my mother with the results on Wednesday and told her to take me directly to the hospital and to pack for a few days. I was directly admitted with a blood sugar of 670-something and put on IV insulin. Training started the next day (how to test, when to test what to eat, which insulin does what and when to take each one... ALL THE THINGS).
If you got a type 1 diagnosis and they are letting you walk around with no meds, they need to be reported to the board of health. And I would hope with the call to report them, they would maybe be able to get you in elsewhere immediately.
That being said, if you are truly type 1, you should not be having low blood sugars. You would have no insulin to get you low
I’m in the honeymoon phase right now so my pancreas is still producing some insulin just not enough to prevent me from having high spikes. My diagnosis was caught super early because my mother is also type 1 and told me to go get tested immediately after hearing my symptoms
If you are still honeymooning you can start cutting carbs to help control those spikes and reduce the stress to the pancreas. Obviously it won't be a long term solution but short term you need to keep those numbers down to prevent DKA.
I have suspected LADA (essentially very slow progressing T1). Drastically cutting carbs is how I've managed for 7 yrs. If something spikes my glucose then i half the carbs and test again until i achieve the desired glucose control. I've eliminated some foods completely from my life. The alternative is to go on insulin which I'm trying to avoid for as long as possible
DrinkInh plenty of water will also help lower glucose concentrations in the blood. Doing some zone 2 cardio (brisk walking) will help utilize some of that glucose. When you exercise, skeleta
My daughter was diagnosed in february 2024 and we started on insulin one hour after diagnosis. Starting on insulin early can help the remaining betacells.
My daughter is still honeymooning strong almost 2 years later maybe because of that she started on insulin early plus i have kept her 99% in range last 1.5 years. Just after diagnosed her need was 20-25 total daily insulin and has gone lower and lower and now almost 2 years later her need are 8-12 units a day unless she gets sick when she do need 50-100% more insulin.
They didn’t send you home with insulin immediately after being diagnosed? Your doctor doesn’t have time to teach you to use insulin? That’s insane and so negligent. I really hope you find a new doctor. This is extremely dangerous for a type 1.
That is insane. That said, you're using mmol/L instead of mg/dl which has me thinking you're not in the U.S. Gosh, I guess drink a ton of water and urinate that sugar out.
Are my eyes deceiving me? Type 1 still not on insulin??
I'm wondering why you are having lows in the night?
I still have some pancreatic function it’s just rapidly declining so I’m overcompensating overnight and having bad lows
My husband was diagnosed about 8 years ago at 25. Similar thing, he didn't use insulin for the first year, then ~1 year on just a night time and eventually mealtime. They just said he was in a honeymoon phase, his just happened to last a long time.
That would be on track with LADA which is treated differently than regular type 1 though.
Your low under the night might be due to sleeping on the sensor, "fake low". On the other hand a healthy person might have lows during the night without any problems and we have to keep in mind that the sensors are calibrated for diabetes management and that there's also a difference between what the sensor shows and the actual blood sugar. You here are in the early stages of diabetes and honeymooning.
Has it been the same with low sugar during the night with all the sensors you wore so far?
Why I think they postponed your endo appointment is because you are really early diagnosed and you still produce insuline and your highs after meals are not so dangerously high that wouldn't be manageable and land you in the hospital.
I wouldn't go shopping for insuline and start playing with it.
If you are type 1 it means body is either producing very little insulin or none at all. If your endo said no basal yet they probably trust the cells you have left but you will eventually run out. I dont know your experience ofcourse im looking at one chart but it might come down and if it doesn’t this is your sign that you need to start on Basal. If you are on bolus I could recommend maybe 1 unit correction or so but right now it seems like you have to ride it out and see where it lands so you can make a more educated solution with your endo
I haven’t seen endo yet at all yet my PCP told me I would need basal but didn’t prescribe any for some reason?? So I’m still waiting to speak to endo
Then I guess it is best to wait or call in for an earlier appointment. Maybe if you can express that you are worried about DKA
In my experience, PCP’s don’t want to make any diabetes related decisions because they don’t specialize in that like an endo. If you call the endo and explain the situation they might try to get you in sooner.
Did you get the CGM right after your diagnosis?
Yes luckily the diabetes educator I spoke to was able to give me a couple sensors before my endo appointment so I would have more data to show them when the time comes. I do a bunch of repeat bloodwork for the endo this week so I’m hoping the results will speed up the process.
I would get ketone meter to measure how bad it is. When I’m fasting I start to check regularly so it doesn’t go up too high. I don’t check if I’m doing intermittent fasting. When im fasting my insulin doesn’t kick in much or it doesn’t kick in.
I'm type one and my first 2 endos didn't want to give me insulin (mind you I was at least on Jardiance) since I was in range, even thought I made it know that I was basically starving my self to not go high. I started reducing carbs, but once you start coming out of the honeymoon phase (it can last years, weeks or days, its random) there is only so much you can decrease until everything spikes you. As other have said, drinking lots of water and exercise help. It's not an instant thing thought, in my experience I hade to be walking for 30 minutes to an hour to see my blood sugar drop but is something. For waters, we are talking about drinking full glasses of water (not my favorite thing to chug). I hope you get the help you need soon. And it sucks having doctors like that.
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I'm removing this comment because exercise for a type 1 without insulin can be extremely dangerous and fast track them into DKA. The advice is good, but only if OP has access to insulin, which they don't.
Your post has been removed because it breaks our rules.
Rule 6: Do not give or request medical advice.
Giving medical advice or diagnosing someone is dangerous since we do not know the full medical situation of our members. It can be more dangerous to follow the wrong advice and diagnosis than it might be to do nothing at all and wait for a doctor to be available.
Please refer someone to a doctor instead of speculating on their situation where possible.
GO TO A HOSPITAL!!! First of all that’s crap that you’re not on anything. Your pancreas is not making any insulin. If you feel like shit, call 911. At the hospital, they will give you insulin and talk to you about insulin and what you need to be on before meals and a bedtime. They’ll hook you up with an endocrinologist or a diabetic educator. And whatever doctor you were seeing prior to this, I’d leave him/her
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Your post has been removed because it breaks our rules.
Rule 6: Do not give or request medical advice.
Giving medical advice or diagnosing someone is dangerous since we do not know the full medical situation of our members. It can be more dangerous to follow the wrong advice and diagnosis than it might be to do nothing at all and wait for a doctor to be available.
Please refer someone to a doctor instead of speculating on their situation where possible.
I'm an old medical professional. I've learned by experience that you need to be your own advocate. I trusted medical professionals who's judgment was closely associated with almost losing my hand due to an infection improperly treated, an ankle supported by an improper brace, a podiatrist who refused to talk to my pain doctor. I won't go to another podiatrist. My primary can provide all they did, but better. Learn about your diabetes. Contact your provider and state your concerns. See if they will address your concerns so you understand them.
Type 1 not on insulin? How is that a thing?
Ohmygawd, hopefully you are Ok!!
Damn homie. Call your primary care. Tell them you’re a diabetic who has no insulin and that you need basal and short acting. Also ask to e referred to a diabetic educator.
Honestly though, whatever person checked your A1c is being negligent if they don’t offer to prescribe insulin immediately. Even the ER should give someone something to keep them from dying while waiting for an appointment.
Insulin isn't usually prescribed by A1c, and a high A1c can be caused by T1 or T2. Prescribing insulin without adequate patient teaching can be very dangerous.
I thought so too. The ER discharged me within minutes of seeing the doctor and didn’t do a single thing to help. I went home with a BG of 23mmol/L that wouldn’t come down for hours and all I could do was lay in bed because I had zero energy
What did you eat or drink to make it go from 10 to 23mmol?
My fasting was 27 mmol just prior to diagnosis; it’s not about food, it’s about lacking a hormone.
Honestly I don’t remember exactly what I had but it was nothing super carb heavy. My mom is a t1D so ive been very strict about my diet for years anticipating that I might get diagnosed so I never even anything super heavy in carbs and no added sugars.
This is urgent. Go to the hospital and they can treat you in the immediate and hopefully they can hook you up with an endo appointment sooner (if you went a hospital and they didn’t give you prompt after-care and a prescription, try a better hospital). Any doctor can prescribe insulin, even if it’s not your endo or primary PCP. You should go to the hospital and get an appointment. Or if you can’t do this, find another PCP or endo (even if just for this one appointment and then you see another). Whoever is available.
That doctor sound insanely incompetent and needs to be put in the trash. Insulin is essential for type 1 survival.
How did they not start you on insulin immediately? Type 1 can't be managed without it. And how do you have a CGM but not insulin???
Well i dont know what type of doc didnt gave u insulin cuz that is conpletely not normal. And no, u r not on honeymoon time or anything like it.
Get on insulin, and good luck.
You'll survive until the 27th, while it's on the high side it won't harm you too much in the short term. In the mean time do control your diet as best as you can.
In the mean time do control your diet as best as you can.
You cannot cure type 1 diabetes with diet because it's not possible for humans to regrow organs at will.
DKA patients routinely present with sky-high blood sugar even though they cannot eat due to nausea because diet isn't the problem.
I'm aware. Not controlling your diet doesn't help, does it? It's damage control given their situation, not a cure. Or maybe I'm wrong and op do not need to worry about their carb intake I guess.
It does not help if OP is diagnosed T1 and has no insulin. They may be in the honeymoon period, but how do you think type 1's end up looking skeletal without insulin if misdiagnosed or undiagnosed? Our bodies can't use any of the energy from our food. We end up DKA which can happen quickly, or never if they have slow onset and their beta cells hang on until then 27th. No matter what you eat, even zero carb, will not help if the remaining beta cells are gone. We do not know what stage (stage 1, 2, or 3 of T1D) they are in.
Perhaps if they stated wait until the 27th then lab tests showed some c-peptide and remaining beta cell function, but OP if you get thirstier, thinner, more tired or begin vomiting then do not wait, go to emergency. I cannot wrap my head around getting a T1 diagnosis w
I am rapidly losing weight which has been my biggest concern. Like 6 pounds in the last week and I was already very thin to begin with due to being undiagnosed and having other chronic illnesses on top of everything.
Did you post on the type 1 subs? r/diabetes_t1 or r/type1diabetes? Perhaps someone in your location can suggest a way to see an endo faster? I see you mentioned your mum is T1? Can she call her endo?
Unfortunately my mom lives in a different country but I will definitely see if maybe I can find someone who will see me faster. I’m getting desperate at this point I’m on like hour 6 of having a high reading
90 to 95% are type 2 and type one count for 5 to 10% according to one source
During trial for GLP1 for type 2 but they were seeing results of type 1 not being damaged more and help maintain insulin production of what they have existing. One doctor was talking about it.
Is this your A1C?