Doing some reading, I’m actually kind of paranoid right now that there’s a chance I might be T1 instead of T2. I have no reason to believe this other than that apparently one third of people over 30 diagnosed with T2 are actually misdiagnosed and are really T1.
Is there some kind of test or some way to know for sure? I’m about to start a very strict keto diet and I don’t want to get ketoacidosis and die for my troubles.
There are 2 tests that are generally done. One is an antibody test. If the antibody is positive that is a sign of type 1. There are a few rare type’s 1 that test negative on an antibody test but don’t make insulin. Plus they do a C-peptide test, the C-peptide tells if you are still making insulin and how much. If it’s low or low normal, it’s a sign of type 1. If it’s normal or high normal it’s a sign of type 2.
50% of people that have type 1 are diagnosed after the age of 30. I just read a recent stat that upped the amount of misdiagnosed type 1’s to 40% of type 1’s are misdiagnosed as type 2’s at first. I don’t think it’s right about the third of type 2’s are really type ones? That’s too many people and insulin production is only short (not necessarily absent) in about a total 6% of type 2’s? Some of that 6% might be type 1’s, some are from the pancreas wearing out over time.
Type 1/LADA is commonly misdiagnosed for one reason because it happens slowly, medications will work at first because you still make some insulin, until you eventually stop. That period of still making some insulin is called the honeymoon period.
Lot of great advice here
Let me tell you that you are not alone with those feelings.
When i was diagnosed i had trouble sleeping as i had fear of hypoglycemic episode at night. I also had the guilt of not taking care of my bod sufficiently enough.
As far as i have observed, majority of the patients get too strict just after the diagnosis and then after some years take the disease as granted resulting into complications.
Anyways, understand that it is the carbohydrates which are responsible to spike your blood sugar. So eating bread, wheat, rice can make your life difficult. Try to avoid grains and look for low carbohydrate alternatives like eggs, meat products, avocados,green vegetables etc.
There are multiple apps available which can give you information about the carbohydrate content in any food.
Sorry you’ve run into this bad health news. The good aspect of diabetes is that it can respond well to many different tactics. These tactics include carb-limited ways of eating and well-timed regular exercise.
One of the areas of informational conflict is around saturated fat. For many years saturated fat was demonized as the root cause of heart disease. There is starting to emerge another way of looking at this issue.
When you have the time, I encourage you to check out this Dr. Jason Fung YouTube video that takes a comprehensive look at the role of fats, including saturated fats, and how they have impacted our health over the last 50 years or so. Dr. Fung does not believe that saturated fats are bad for your health. The really bad actors have been shown to be the trans-fats like margarine. This newly released summary is like a science lecture and well worth an hour of your time.
Meals that I favor that gently impact my need for insulin and give great post-meal glucose numbers include meat, eggs, cheese, berries, nuts, fish, and low carb veggies like cauliflower, peppers and avocados. I avoid bread, rice, noodles, potatoes, pasta and all processed foods. I definitely do not drink carbs like fizzy drinks and fruit juice. If a food includes an ingredient list of more than a few things, I am suspicious about it.
My one meal suggestion to you is anything with eggs. I like to pair my eggs with bacon or sausage, cheese, avocado, and sauteed tomatoes, and onions. Two hard-boiled eggs will keep me energized for hours and my appetite suppressed.
I tend to shop on the outside aisles of the grocery store as the interior aisles are dominated by processed carbohydrates sweetened with high fructose corn syrup and other sweeteners called by a dozen different names.
While my way of eating and food choices are not shared by everyone, you will do yourself a favor with some personal experimentation to discover what works best for you. Some people refer to this tactic as “eat to your meter.” That means checking your blood sugar before a meal and maybe an hour or two after a meal to see how your metabolism deals with that meal. Make a record and you will quickly find out what will work for you. If your meter doesn’t like a food then it’s best to drop it completely or severely restrict its frequency and amounts. If your meter reports good post-meal numbers, then eat it more frequently.
No need to let fear cloud your mind. Fear is great for acute events like quickly stepping out of the way of a car as you cross the street. That fear keeps you alive. Fear held for a longer time, however, will corrode your well-being and compromise your ability to make good choices going forward.
You’ve had lots of good support here; I wish you the best!
As Marie said you should ask for an antibody panel and a C-peptide. You should also ask them to check for ketones when you see your doctor. I know I was spilling ketones at diagnosis. You can buy ketone strips at a pharmacy without a prescription and if you are showing medium ketones with high blood sugars you should at least call your physicians office. They may very well tell you to go to an emergency room.
On the bright side - if you’re not showing ketones you can relax a little about DKA.
If you are an untreated T1, it isn’t the low carb or keto diet that gets you into trouble it’s the lack of insulin.
Maurie
Also worth noting, you are on a very small dose of metformin, likely so your body (especially your GI tract) can get used to it, but often the goal is to work up to 2000mg/day (1000 in morning, 1000 at night). If you’re tolerating the metformin ok so far, and if the T1 tests come back negative, you could ask your dr about increasing the dose (I’d go to 500mg 2x day, then if you keep increasing, 750mg 2x day, then 1000mg 2x day).
Yeah, on the bottle it slowly increases to 1000 twice a day, I’ve started doing 500 twice a day, I take one at 10am and one at 10pm right now.
I barely ate yesterday and woke up to a 127 glucose this morning. My dad told me that our family does indeed have a history of type 1 so I’m pretty freaked out right now.
Of course it’s all super scary right now, but you are doing exactly what you should be, and moving things in the right direction, and it is going to be ok!! You’ll be amazed at how much better you feel as you start to figure this out, and trust me, you will, it’s just going to be a process and take some time.
Some good news: if you’re waking up to 127, that means if you have T1, it is in relatively early stages (e.g., producing a decent amount of insulin) and you are likely not in imminent danger (to give perspective, as a kid with T1, I was at 750 when diagnosed). It also still seems quite plausible that you’re T2. But only way to know is to get those autoimmune tests done. I’m not sure one diagnosis is better or worse, it will just tell you what direction to take your treatment (mostly, whether you need insulin or not, and believe it or not, there are some very real pros to taking insulin vs managing with diet/oral meds).
Interestingly, and perhaps counterintuitively, T2 is more heritable than T1 overall. There are some families with very strong histories of T1 and autoimmune disease (you’ll see some on here with multiple children or parent/children with T1), but it’s rare vs cases more like mine that seemingly come out of nowhere. T2 on the other hand tends to run in families fairly strongly, clustered with risk more broadly for metabolic disease.
I basically fasted most of yesterday and today so far, I did some shopping and have a week’s worth of keto meals ready to cook and assemble. The nutritionist at the diabetes education center that I visited today didn’t like the idea of me doing keto and states that I can’t get so many calories from even good fats, I didn’t see any really good reasoning behind it as far as I asked, so I’m going to give it an honest try and see how it does.
Something that also greatly concerns me is ketoacidosis. I haven’t eaten much yesterday and today (yesterday was oatmeal and almonds and then fish and veggies and avocado and today so far just the almonds) and before I eat here in a minute I tested my ketone and glucose levels according to the meter and test strips:
Glucose: 138
Ketones: Moderate (40 mg)
I really want to stay on top of this and look for the red flags. Is this a warning sign? What should I be looking for as the “oh crap call 911” for ketoacidosis?
Thank you.
A moderate or even somewhat high measurement of ketones means very little without some other key symptoms. Nausea, thirst, excessive urination, exhaustion. The danger from DKA comes from the dehydration not from the ketones themselves. Having ketones does not mean you are dehydrated. It just means your body is in a state of trying to use ketones as energy rather than glucose. If you are dehydrated however and have ketones that is cause for concern and should be addressed as soon as possible.
As several other posters have suggested get the antibody and c-peptide testing done in order to not only determine whether you are type 1 or 2 but to find out if you would be at risk of DKA.
Good afternoon, welcome. I eat oatmeal every morning. But I eat old fashioned oats. 1/2 cup oats,1cup water ,microwave 2 minutes, give or take. I put blueberries and nuts in it. I do water aerobics and walk, 5,500 steps a day. Do an activity you love for me, pool , walk, my gardens, mow and shoveling. I eat 120-150 carbs per day depending on activity. I have done this for 26 years. I eat to fuel me. I just know a keto would not work for me. I eat lots of vegetables, salads , lean meats, , a little bit of pasta once a month. A diet is an individual program. My last A1c was 6.2. I have no complications. I am 67. Best of luck. Nancy50
You’ve had a lot of great feedback here, and I’ll reinforce much of it with my story.
When I turned 35 I received a diagnosis of T2, a1c 10.8, fasting in the 300s.
I turned to Atkins (the 92 version), which was very low carb but not as high in fat as keto.
I dropped a little weight but my BG came down like a ROCK. For many years that diet served me very well, and my a1c stayed in the 5.5-6.5 range.
Fast forward 12 years to this past summer. It turns out I had been misdiagnosed and was really LADA (T1), which is why low carb and tons of different medications had eventually stopped working. My a1c was 14.2.
I never had DKA. I never had lows until I went on insulin this summer; I’ve had a few since then, mostly because I took too much insulin or didn’t time it right with my meal. Once in a while my Libre will give me a number that doesn’t make a lot of sense, and I check it against a finger stick. Not all sensors/locations on my body are as accurate as others, so unless I feel low I check for mechanical failure before treating the low.
You’re going to be okay. You WILL. You will bring down your BG, which depending on your diet before might happen very quickly. As others have said, eat to your meter - check the foods you eat to see their impact on your BG. Then you can decide if those are foods you want to keep in your everyday diet or if you need to save them for special occasions. You will learn over time what your body wants and needs from you. Be honest with your doctor - don’t ever be afraid to tell her the truth. Let her guide you, but make the best decisions you can with the information you collect about YOUR experience.
And come here often. There are loads of very kind people here who will help you.
Firenza gave a good explanation. The instructions I was given when first diagnosed was to call the doc with a blood glucose of 250 or above and moderate ketones. If you are able to stay between 100 and 200 ketones shouldn’t be a problem unless you’re feeling sick.
There’s a big difference between nutritional ketosis and diabetic ketoacidosis (DKA). Here’s an image that shows the distance between these two very different metabolic states, 0.5-3.0 for ketosis and 10+ for DKA. Nutritional ketosis is a light breeze while DKA is a powerful storm.
Well put, when I aim at nutritional Ketosis I look for 2.0 or so
Works well for me as a T2
Ah, so earlier because I haven’t been eating well I was a 4/starvation ketosis? Makes perfect sense. I’ll monitor it closely, thank you for this valuable information.
I hit another snag. A keto diet is supposed to be high in sodium, but I have high blood pressure. Anyone run into this before?
As you’ve already discovered, everyone’s D, or their take on whatever type of D they have, is different. But I’m pretty sure there’s one very common element: we started with a really high a1c at diagnosis, and lowered it from there. How you do that is, of course, the challenge. You’ll figure out what works for you. It takes a while. And if what you need as part of your solution is exogenous insulin, it’s remarkably effective!
When A1c history is over 10, a little forgiveness in setting new goals is not only allowed but reasonable. You may never get to below 6. Limiting this comment to merely the one point, consider that A1c goals are individualized and therefore different in various patients for a variety of reasons. The risk of severe hypoglycemia (which is horrible) sharply increases as level of control increases. Believe it or not people with a A1c in the good range are at higher risk for that than people with a miserable A1c like you. In any case, it is reasonable advice to anybody to not set the goal to below 7 until you have a lab (or two) showing numbers such as an 8 or a 7. It is not a race. There is no exact standard of care. Thus, prudence and, to-ere-on-the-side-of-caution is OK. Do not expect perfect number for a long time despite taking good steps to get there. In conclusion: maybe a goal near 7 for the next blood draw is OK in perhaps about 30 - 60 days since the last test, and then take it from there. . . Too many people stress over this number in isolation, is my opinion. Note there are many different opinions on it, including from experts. I am in the “loosen up” camp. I want to tell you why. The marathon to perfection camp often burns out and is not sustainable although it can work better in the short run. I prefer walk not run.
And as Terry4 knows, the home urine keytone strips only measure one kind of keytone (and therefore inaccurate and very limited value) so one needs a blood draw to look at serum keytones – a test rarely ordered even to diagnose DKA and then interesting but not necessary for the DKA Ddx. The Pt with a bG of 900 and kussmaul breathing and severe excess negative base is treated for DKA without keytone labs.
Nice graphic.
Just as a curious sidebar, maybe it’s worth pointing out that in organic chemistry decades ago we learnt that a keytone is merely an oxygen double bonded to any carbon, usually where that carbon is typically attached to other constituents (usually single bonds to each of two carbons or to two carbon chains) of the overall molecule. So, on some carbon cmpd, if you loose two hydrogens attached to a particular carbon and replace it with double bonded single oxygen, then that carbon to oxygen unit is the basis of the keytone group. We might as well know what we’re talking about when we use a term.
As a type 2, its possible that you might get down to 5.4. But, it also might not be in the cards. Try to focus on simply getting it down. Its much harder to drop below 6 than it is to drop below 8.
It shouldn’t take much effort for you to get that number down if you are properly medicated. But, an a1c is a 3 month average, so it will take time. You might not see much decrease for at least a month.
Are you checking your BG everyday? Thats a good place to start.
When I have felt very nervous in the past, I try to spend time around people I trust. At least I know that they will l call 911 if needed. If you dont feel well, you can always sit in a public place. Have you been in to see a primary care physician and talked to them about your cardiac concern?