How long can someone live with type one without being diagnosed?


(Jeanne) #1

Hi all my name is Jeanne and I’m 31 and recently diagnosed with type one diabetes. I think that I’ve been suffering with this and not diagnosed for at least 8 years. Is that really possible in the world today? My doctor assumes at least 2 years because I had a bad bout of dizziness for like 2 days and was prescribed anti-vert for it, literally anti vertigo meds. I believe it’s been at least 8 years because that’s how long I haven’t been able to drink alcohol, besides of course it being the last time I felt as good as I do when my sugar is balanced. See my life has always been complicated and health insurance non existent so when I’d go to the emergency room for something and they referred me to a doctor I wouldn’t go, I felt like I couldn’t. Affording health care seemed impossible and no one ever looked at me and said “we think you might be diabetic, go see the doctor we referred you to.” Would that be legal? I’ve even had surgery! I remember waking up with a tube in my throat and nobody telling me why. I need to know if this is possible, I also need to know how to get a hospital to release your medical records, and probably a cookie lol, my blood sugar must be low because I’m getting a little weepy. Any information will help. Thanks so much. Also I have never seen a glucometer in a doctors office or emergency room. Why is that?


(Hollie) #2

That’s awful that they didn’t pick it up!! At least now you know you’re going to start feeling better :slight_smile:
If you had a healthy diet it’s quite possible it could be quite a long time I’d imagine!
Best of luck getting it all sorted x


(Dennis J. Dacey, PWD) #3

Hi Jeanne @JeanneMS,

You probably DID NOT have TypeOne for eight years before your recent “diagnosis”.
In true type one diabetes the body does not produce any insulin at all and insulin is needed to “transport” the nutrition in food into body cells, including into the brain. Without having this “fuel”, your body would have shutdown years ago. I’m not a medical doctor and I do not know the results of medical tests or diagnosis for you, but a guess might be that it is possible that you had a condition “hypoglycemia” or “pre-diabetes” in which the body produces more insulin than actually needed; both ill-defined terms. In many people, consuming alcohol lowers BGL [Body Glucose Level" and taking a drink while your glucose level is already low would create an awful feeling.
You can get your medical reports, if they still exist, from the hospital by filing a written request with the hospital.


(sneathbupp) #4

My doctors said I was probably T1 for a a while prior to diagnosis. I lost a lot of weight over a couple of years before diagnosis and after diagnosis I missed the honeymoon period all together (probably went through it before diagnosis). I fell fishing and got an abscess which they think kicked off the DKA.


(Jeanne) #5

Well that sounds interesting but I don’t think you understand why I had to stop drinking. See I don’t think diabetes made me sicker well a little but I remember drinking more than I usually had, drinking faster than everyone else and spending more money, then of course having worse and worse hangovers. Which is why I quit plus weird things happened due to my overuse like waking up at some strangers house who said my friend brought me their because I had been asleep for days. Being a bartender I just thought it was a prank, now im pretty sure I was in a diabetic coma. There are many more stories of 8 years of weird shit that happened so why exactly do you think it is impossible? Also how is it that their are 8 million people who aren’t diagnosed if it’s not possible? Sorry I’m just wondering what facts support your theory. Also the way you describe diabetes is not how I understand it at all… :frowning:


(joe) #6

hi Jeanne @JeanneMS,

I am a optimist, so I think that a lot of things are possible, including a very slow onset of eventual diagnosis of type 1 diabetes. the way I see it, diabetes is difficult to diagnose. Random blood sugar testing does not diagnose it (definitively). so many many people share a story of years of suffering and then many (especially if you are over 20 years old) will also say their doctors first put them on Type 2 diabetes drugs or misdiagnosed them with type 2. so sure… I think its possible and I believe you.

please understand that many of us were diagnosed between 6-14, this disease used to be called Juvenile Diabetes because, until further study confirmed otherwise, it was a childhood onset disease.

please also understand that type 1 is rare compared to type 2, and so there is mass confusion and misunderstandings when it comes to what diabetes is and how to treat it.

my body started to make insufficient insulin after a virus and severe sunburn (likely unrelated). over the next 8 months, I went from typical drinking of water to massive drinking of water with corresponding massive loss of weight… without insulin, your body becomes dehydrated and will begin to consume fat and muscle in order to power muscles and even the brain. Once you stop making insulin… COMPLETELY… you can live probably a month to 4 months as you starve to death. the total length of time you can survive depends on a lot of things, as DKA (diabetic ketoacidosis) can just plain end your life.

understanding type 1 and how to treat it with insulin takes a long time and we’re all students. The best reference I have come across is “Think Like a Pancreas” and for about 13 bucks it is worth the read.

your correlating observations with respect to alcohol may not be everyone’s experience. alcohol has zero effect on my diabetes as long as I know how to treat the drinks that have carbohydrates with insulin and understand how alcohol interferes with the absorption of carbs as well. again, for me, no problems with alcohol and blood sugar.

we’re glad you are here and welcome to the website! feel free to reach out anytime for anything.

Joe


(Jeanne) #7

My doctor said that I am definitely type one because I had an a1c of 10 and my body still produces I think it was antibodies, I remember it meaning I was still resilient. See my father is type 1 but he has never been a real part of my life, on his side I have an aunt and a cousin that are type one and a few type two. The oldest the type one relatives found out was 17 I think. I remember when I was 23 I lost muscle definition under my arms. 23 is too young for that but everyone said I was getting old and I believed it. There are a million other reasons like that but I feel good sometimes now, usually when my bs is like 160 which idk if that’s good or bad, but it is after eating, without eating I’m around 100 and my doctor says I need to be at like 130. I think if I start eating real carbs in the morning, like a piece of sourdough toast rather than the whole wheat it’ll keep me a little higher all day and ill be more satisfied. Idk about adjusting my insulin shots yet, I know ill have to control it eventually but I’m uneasy about it.


(Linda) #8

Wow! What a mish mash of different information. I don’t even know where to begin. I will probably not remember to address everything, but here goes.

  1. Yes T1D means that your pancreas with is no longer producing sufficient insulin. It is an autoimmune disease. Meaning if you test positive for one or more of the autoimmune markers, you are t1d.

I have enrolled my children in a study that states: you can have the autoimmune markers for 10 or more years before exhibiting symptoms.

Autoimmune means your body is attacking itself. But that does not happen all at once over night. It happens over time, how much time is different for everyone. You could have been working up to this for any number of years. The fact that t1d runs in your family makes it more likely that you and your descendants would be predisposed to getting it.

I know I have been diabetic for a number of years as I had the classic must drink and pee a lot symptoms. I assumed it was t2 so I ignored it and tried to cure it with a low carb diet (which is possible for t2d). This went on for years till something else brought me to the dr and when they drew my blood, they freaked out.

  1. I too am appawled at the fact that Drs do NOT routinely check children for diabetes. Always just assuming that diabetes occurs in the old and fat. I insist my kids get checked at every appointment. Unfortunately that is not the norm.

  2. Alcohol. A 2 edged sword. Initially any alcohol with sugars in it will affect your blood sugar levels. With multiple drinks, however, the liver wants to detoxify your body. Thus it will switch from converting glycogen into glucose for use by your cells to detoxifying the alcohol. Where this becomes dangerous is if you have more insulin (natural or injected) in your system than sugars, you will go low and your liver will not help you out of the low naturally.

Ok like I said I can’t recall the other issues. I’ll post this for now. Good luck on your adventure as a t1d.


(Linda) #9

In my humble opinion 100 fasting is awesome. Going into the 160’s post meal is fine too. It sounds to me like you are doing well with your insulin. Personally I would be very happy with those numbers as long as you don’t have lows (less than 70) or highs (over 250). Mostly I like to stay between 100 and 160. My dr tells me I am doing great and she wishes she saw more numbers like mine. Hope my opinions help in you journey.


#10

It’s possible, since the onset of T1D is sometimes different in adults than it is in children. I’ve even heard of doctors calling it Type 1.5 Diabetes. cue eye roll

100-160 is awesome, you’re doing absolutely perfect! You’re probably in the “honeymoon” period now, and may have been for a long time. In case you aren’t familiar with that annoying term, that’s basically the time it takes from your diagnosis for your body to basically finish killing all of your islet cells (the cells that make insulin). During this time your body still kinda helps make insulin, but you have to add insulin to make sure you cover all your carbs.
I can see why people would be confused in your case about the difference between Type 1 and Type 2, but the antibodies test proves you have T1D and your body is attacking your islet cells. In T2D, the islet cells are weakened and produce inferior or less effective insulin so no antibodies would be present.
It’s not the most cheerful way to answer your original question, but since your numbers are so good now, if you start having trouble controling your sugars and need to increase your insulin in a year or so, then your body probably started attacking your islet cells recently, like in the past 6 months. If you are able to keep up with fairly easy management with 100-160 without any large increases in your insulin dosage, then it probably has been a few years and a very slow onset. So, at least it won’t be a mystery forever, you’ll find out eventually when you have to start increasing your insulin intake. What was your blood sugar when you were diagnosed?

With regards to requesting your medical records, it isn’t too hard or too expensive to get them. I assume you are wanting to see if your blood sugar was ever tested to look for a pattern, and see if it was ever at an elevated level and they did not tell you, right? I think that would be sufficient to prove negligence, but I gotta tell you, most of the time they don’t do a glucose test and just write down a normal test number, unless you passed out and came into the ER unconscious. I would think that they would test blood sugar before surgery…but I don’t think that they do…I haven’t had surgery as a non-diabetic. Before going into how to get your records, first things first, do you remember the names of all of the places you want to get medical records from? If so, go onto their website or call their medical records department and there should be a Records Release Authorization form or something like that. You either fill that out and bring it into the office or send a notorized copy or a secure email to request the records. The records department and maybe their website can tell you their exact requirements to send your records. Many will just email them to you via a secure email system once they get the signed form authorizing their office to send them to you. Alternatively, You could maybe ask your current diagnosing doctor to request the records for you, maybe just and prior blood sugar numbers, but the doctors kinda have a code to not get each other sued, so he or she may not be down for it.

I hope this helped! It’s kinda rare that you’ll get an answer to a big question about your diagnosis, and very very few people know when they think it started. I have no clue. But you’ll have a good guess when you start leaving the honeymoon phase. There isn’t a scientific concensus about how or why a person gets autoimmune disease, so be prepared to make peace with that, even if your records are able to provide some information. Best wishes!!


(Jeanne) #11

Wow thanks so much for all the replies and info. I think someone asked about my bgs when I got diagnosed and my bg was 337, plasma was 299 but I hadn’t eaten in 8 hours, but my a1c was 10, well 10.6 that was on September 19th, as of November 16th I’m down to 6.8 :). Which I imagine would have been a lot harder to do if I hadn’t been going in and out of a low to no carb diet over the years. Especially because it would’ve taken me forever to find the only non craptastic diet soda imo(Diet A&W Cream Soda). But ya, I tried adding the 1 piece of white toast and it was too much. It turns out I was taking too much insulin while I was asleep, so I would go hypo while I was asleep (without knowing ) and it made me drop low sometimes(while awake), my lowest was 47 :frowning: these days my biggest issue is making myself eat in the morning. But I’m off topic.
About living with type 1 without being diagnosed, I still believe I was sick for 8 years but my doctors (so far) agree that I was sick for at least 2 years. Their reasoning is because that’s when I was prescribed meclizine by a doctor. I had been dizzy for two days, I refused to actually faint, lol I even kept my head tilted a certain way hoping it would go away and didn’t. I went to urgent care and there they treated me with a shot of steroids in my butt and when it persisted in a milder form I saw a doctor and got the scrip.
I think the difference is really in the age. If a child gets type 1 they can’t live very long (I imagine it’s because they are still growing and using more “energy”). I like that term “energy” people keep saying nutrients but that isn’t exactly right because I’ve never heard of it having any effect on your body and brain receiving vitamins or proteins. Actually ketones are your bodies way of replacing the energy you aren’t getting. The problem is that your brain is telling the rest of your body that it’s starving when you’re not because you are no longer processing your sugar into energy. Therefore it starts making its own energy in the form of ketones just to help you. Plus the not processed sugar attacks and eats your fat cells sending them to your liver which makes even more ketones, but what if you weren’t eating sugar. Obviously you would still be making too many ketones, your body would still think you were starving increasing how much you drink or eat, but what would your blood sugar look like? More importantly would you still lose weight if you weren’t eating the sugars that in turn eat your fat? But that’s not what happened with me, with me I would change my diet before I saw a doctor and to them I looked like a drug addict coming down off something. Do you know why? I learned my first day I took insulin. My first day I took insulin I got the shakes, sweats, and a headache because I was coming down off idk if it was the sugar or ketones but yes there it was withdrawal. Withdrawal! From sugar! I spent my whole life doing everything possible to not touch any hard drugs and I get withdrawal from sugar and a lifetime of needles. Fmlsmh excuse my language. But I’ve managed to go off on enough tangents for now so ill leave everyone with this. For every diabetic 5% of those are type 1 and for every type 1 diabetic 25% are adults when it presents.


(Jared) #12

Just to clarify for anyone that might be confused, T1D is an autoimmune disease (as stated above). I will use myself as the hypothetical in this scenario to emphasis the course of this disease. If I stop taking insulin, I die.This process can take varying amounts of time based on a few things, but generally, it would be around 3days to 3 weeks. I would immediately switch to ketosis, as sugar would not provide anything for my body, and as a result I would fall rapidly into DKA which would result in a coma, brain damage, and eventually death. Inversely, presuming medical intervention to alleviate DKA (electrolytes, treating potential illness, etc, but NOT insulin in this hypothetical) my body would ramp up ketone generation, and you would enter catabolism. This is a process where your body fuels itself by breaking down protein, which means muscle. This will eventually cause heart failure, presuming your liver and kidneys last that long attempting to filter everything else out. It’s pretty grim, but this is why diabetes education is important. In type 2, most realistically you are only hurting yourself long term, the long term effect of high blood sugar will severely damage tons of parts of your body. In type 1, you have the same woes as type 2 if you do not control your BG, but also have short term expectations, as a diagnosis of type 1 is essentially the equivalence of saying you need to manually replace your pancreatic function.

My doctors caught the antibodies on a metabolic panel checking for it when I had some of the common symptoms. My pancreas had less than 1% function within 2 months. The rate of immune system destruction to the pancreas can vary wildly between individuals, but you are only considered T1 after it reaches a threshold that essentially finishes killing it off. You can think of it metaphorically as a sponge. Your immune system kills off islet cells and your pancreas is squeezed harder to produce more insulin (with less cells). There is a point where it literally can no longer function, and at that point insulin production drops off the table almost completely. When this drop off is more gradual, it’s called the honeymoon phase, but usually this phase still occurs after a large spike (ie your pancreas drops to 40% function, then reduces to <1% over the next few months).

Fortunately today’s technology and up and coming technologies have vastly improved our lives overall, to a point where the average T1D has a longer life expectancy and quality of life than the average individual (with tight control). This is a result of various things in our environment that cause long term damage to the body when consumed in large quantities that we, as T1s, tend to not consume at all or nearly as much (soft drinks, corn syrup containing products, etc). Those same dietary issues are one of the biggest driving forces for why there are so many T2 diagnoses now-a-days, but that’s completely off topic.

There are so many sources of information via people who are not correctly informed, or are blatantly misinformed, or regrettably have no idea what they’re talking about, as Type 2 and Type 1 is melded together in the mainstream, and there is not a lot of awareness overall on what Type 1 is and how it works. There are a large number of type 1s who simply do what their doctor says and yet do not have a fundamental understanding of a disease that 99.99% of the time is up to YOU to treat. It’s good sites like this exist :smiley:, but being here in and of itself means that you have a desire to learn, teach, or both. There are a lot of other people out there, however, that could also benefit from such information.

Sorry for being rather short, but I have a tendency to type entire books, and my publisher is still asleep, so I’ll stop myself here :stuck_out_tongue:


(Jeanne) #13

Hi @Zarraeda Did you know that most Type 1 adult diabetics also called type 1.5 or lada go without being diagnosed for about 6 years. The difference between type 1 and type two is simply whether or not the person’s immune system attacked itself or if the person’s body is now resistant to using the insulin produced or injected, which is why they take pills even after they are treating with insulin. The pills help their body process the insulin. I also think that you should know that I am no where saying that now that I have treated my diabetes that I could stop taking insulin without dying quickly. What I was trying to figure out is if I was living with this as long as I suspected. Just so you know there is no specific time agreed on that I was living as an adult type one diabetic without being diagnosed, but every doctor I’ve talked to agrees that it was at least two years due to certain prescriptions. Please read up on how type one diabetes effects adults and you’ll find out that most if not all were diabetic(yes type 1) long before they found out. Also I want to clarify that the reason a massive amount of ketones show up is because the unprocessed sugar or glucose in your blood feeds off your fat cells which then hedd to your liver turning into more ketones. And because your body is craving the sugar/energy it feels it’s not getting you will crave sugar which will become ketones. So let’s go over it, type 1 diabetic adults can live for a long time without being diagnosed. A type 2 diabetic would resist metabolizing the insulin and would require a pill no matter if their body still produced insulin or not. And ketones don’t just spike to the roof without the person being previously treated and stopped, an untreated child, an adult who spent their ‘honeymoon phase’ without being diagnosed and completely ran out of insulin, or actually eating a ton of carbs and sugars as an untreated diabetic , again the last part does not pertain to children or the previously treated, or possibly those with zero beta cells or insulin left in their body . As far as I have read the onset of type 1 diabetes in a child is rapid and traumatic. I realize this makes it hard for people to understand that it could happen another way although there is plenty of evidence that it does in adults. I hope you read on the onset of type 1 diabetes in adults. It is no longer juvenile. Here’s food for thought, why would anyone ever suspect that an autoimmune disease could only effect children? I’d have to look up other autoimmune diseases to find out but the whole concept seems just wrong. Also. If their are autoimmune diseases that only effect children and juveniles, what would make them start showing up in adults? I’m going to look that up now and see how far I get. Thank you for your post Zarraeda :slight_smile:


(Jared) #14

Just to clarify so there isn’t confusion from my previous post, you could have had T1D the entire time, it is possible, however that suggested diagnosis is simply stating that starting around X time, your beta cells started to be destroyed. Adults vs adolescents both vary, as children can either have next to no beta cells rapidly, or have a decade long honeymoon phase with only a slow beta cell death rate, it is all subject to the individual, and embodies the true definition of “your mileage may vary”.

With that being said:
Once you succumb to what I would argue T1D truly embodies via its diagnosis, which is at some definite point in the future your beta cells will be unable to sustain you via production of the hormone insulin, at that point your fate is sealed (from a REQUIRING insulin perspective).

Anything in between is all colloquially referred to as the honeymoon phase, which, as stated, can literally last a quarter to a half of one’s life in some extreme cases (but that is very rare).

Taking this into account, without insulin and before ketosis, your body runs into overdrive fueling gluconeogenesis, which is what would inevitably end up hurting you long term from crazy high brain damaging coma levels of sugar, in a hypothetical where DKA didn’t harm you first.

P.S. Going back over my post makes it perhaps seem argumentative or overdramatic, but the attempt is simply to stress that there are only two metabolic pathways for your body to fuel itself from. There are multiple side chemical reactions that can result in a net energy gain, but unless occurring within a sustained usage state, most of this energy is used in homeostasis (as it is miniscule as compared to glycolysis or ketosis). I would invite you to research the CAC ( citric acid cycle) to better understand the repercussions of how ATP is formed chemically, and what it inevitably means if a T1D is not able to sustain glycolysis. Tl;dr, its bad.

But you aren’t wrong, in adults it is MORE common to have T1D set in over an elongated course of time, as it has been shown that the beta cell death does just seem to occur slower (on average) for adults, the reasoning why is still unknown. There are plenty of speculations, but I’m not going to regurgitate non proven rhetoric. Same thing goes for the presence and amount of ICA, IAA, GAD, and IA2 antibodies respectively. Everyone’s’ mileage may vary up to the point of no or severely limited hormone production (because keep in mind, it IS a hormone, and serves little purpose other than to indicate a task for other cells to carry out[although there are some still undefined actions of insulin within the brain]), but at that point we are more or less equal. Individual ability to tolerate certain foods will vary based on metabolic rate, and intestinal health, gut microbiome, activity level, age, and what not, but in regards to baseline pancreatic function, we’re all a big 0% (or close enough to it) and without insulin, our fate is sealed.

It’s almost a semantical argument which I’d say deserves a better definition in medical terms, as there’s “I have an immune system that’s making me T1D” and theres “My immune system has succeeded and I am now T1D”. The differences in life or death between those two areas of the same disease are vast, and exactly that - a matter of life and death. It’s unrealistic to expect a patient to research things to such an extent with other life commitments as well, and it’s even less realistic to expect the patient is or hopes to be an endocrinologist, biologist, or some other form of scientist with a heavy weighted field in understanding the body from a metabolic standpoint.
thanks for the reply @JeanneMS


(BookwormNerd13) #15

I’m obviously not a doctor, but I’m not sure if it’s possible to have undiagnosed T1 for 8 years and only have a bg of 337… my doctor thinks I was only sick for a few months, and my bg was close to 500 when I was diagnosed. That said, I do agree that it’s a bit different for everyone and a low-carb diet would certainly help. My symptoms were different from yours too; I tend to get dizziness when I’m low rather than high, so IDK.


(Jeanne) #16

Hi @ Zarraeda thank you for your post. I like reading your posts because they are very astute and knowledgeable. One small thing. As far as I understand it our immune system is triggered by something known or unknown to kill off the beta cells, like in response to a virus. I thought that when that happens all the beta cells die after being attacked by the t4. Meaning all the beta cells die at once and it’s the insulin left over that runs the body after. At first causing the person to be hypoglycemic while using the bulk, and sustaining with the little left over in adults, or depleting them all as is in children and young adults. If this is not correct please let me know as you seem like you would find out. Thanks Again :slight_smile:


(Jeanne) #17

Hi @bookwormnerd13 thanks for your reply :slight_smile: I know it’s hard to understand and I’m working to really hard to know for sure. My doctors agree on at least two years. If I speculate on my diagnosed bgs I’d say it was because I hadn’t eaten or drank for 8 hours, or maybe when your bgs feed on fat to become ketones they are no longer bgs. I’m really not sure, my doctors haven’t told me it was strange yet, but I will ask. :slight_smile: Thanks again for your reply


(Jared) #18

@JeanneMS It is correct that we do not know what triggers it, environmental stimuli is the most likely, the release of the wrong antibody under xyz conditions that eventually causes this to occur. Whatever the issue though, there is a genetic predisposition found in the HLA-DR3/4 DQ8 genotype for T1D, which suggests that it is mostly genetic, merely being triggered by something externally (of which we have no definitive knowledge of).
As for the immediate killing off of beta cells, no, It can take quite some time. The “battle” so to speak of how long this process takes is basically equivalent to the length of time your honeymoon phase lasts: when the immune system has won, the honeymoon phase ends.
It is also possible that despite having some % of healthy beta cells, that they were overtaxed during attempted production and have merely shut down, being inhibited by the immune system but not fully destroyed - also rare, and I don’t know of any tests showing this on humans, but definitely so on rats, so it is assumed something similar could occur in us (but once again not proven).
They definitely can be killed off quickly, but I would say that’s the exception more than the rule. The average honeymoon phase lasts <1 year.
As always, it’s important to note many factors come into play, especially with metabolic disorders where there are so many entangled functions that any variable changes in one can effect the whole system.