Non-diabetic hypoglycemia leading to a diabetes diagnosis?

Hi Mag1819,

It might not be a bad idea to let your endo know about the highs before your appointment. That way she can give it some thought before your appointment and perhaps have some ideas/suggestions to discuss with you during the appointment, rather than having to think on the spot, so to speak.

It could be as simple as calling the office and asking them to pass the info along to her.

Just to put it out there - diagnosed at age 6 in 1970. :slight_smile:

Good luck!

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Iā€™ve been T1D for 37 years. About 1 year before I was diagnosed with T1D I experienced pretty much the same symptoms you are experiencing. This was back in the day and there werenā€™t the resources to diagnose what I was going though. It was only later that I identified the issue as Hypo events. What else would make me sweat, shake and eat 3 pā€™nut butter and jelly sandwiches in 5 minutes!

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That mustā€™ve been awful! Iā€™m just so ready to go back to the doctor and hopefully figure out whatā€™s going on. Iā€™m ready to feel better!

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If you donā€™t mind me asking, what were your BG numbers when you were diagnosed?

Itā€™s been so long ago I donā€™t remember. I do remember my unquenchable thirst for water and frequent urination. Iā€™m sure it was very high as I was most likely suffering from DKA.

I was 650. That was under the 700 limit where they paged the doctor so I ended up another hour before the gave me my first insulin injection. 20 units of regular insulin.
In the morning I thought I was cured. I felt better my blurry vision was gone, I had energy.
The the nurse walked in with breakfast and more insulin, something called a sliding scale and wheeled in, yes wheeled in a glucose monitor for my first self injected dose.

That sounds like something out of the 1950s. However that was 1987

I donā€™t remember how they determined my BG in the hospital but I do remember being sent home with a roll of tape which I peeā€™ed on to see if glucose was present in the urine and a vial of strips that required me to prick my finger with a needle, place blood on the reagent part of the strip, wait one minute, blot, wait one more minute and then compare the color of the reagent with the color chart on the vial.
I was, as you most likely were, placed on a regime of R and NPH insulin. At the time both were made from beef and pork pancreas extractions.
Things got easier with glucose meters, RNA and analog insulins. A lot easier with pumps and CGM.
Itā€™s been a long road.

If you are anything like me, I do the low #s also always have pre-Diabetes, you are not going to know why, just learn how to deal with it. Glad your Endo does is way better. I was also tested for that tumor as well.

Thought Iā€™d update. I just left my endos office and Iā€™m feeling quite defeated. She said my numbers are definitely pre-diabetic but she never mentioned anything about type 1 or 2. She said this could go on to be full blown diabetes but thereā€™s no way to know. My A1C based on my BGs on my CGM is 5.8, so also pre-diabetic. Sheā€™s sending me for an oral glucose tolerance test and said sheā€™ll see me for a 4 week follow-up. Iā€™m just confused as Iā€™m a healthy 21 year old who works out and eats healthy as she even said I do based on my food log. I guess I was just hoping for a more solid answer as Iā€™d really like to start feeling better. She still wants me to wear the CGM and continue to monitor.

You and your endo are on the right track. Just stay with it, learn all you can and you will lead a very long and healthy life. As life progresses, body changes can and will happen from time to time and just need to be dealt with. Sometimes the psychological effect is much harder to wrap your head around than taking prompt remedial action. With diabetes, oftentimes self-denial is the toughest to get past.

Even the most careful healthiest individual in the world, can get hit by a truck tomorrow and it is all over. For you, it is not over, just the beginning of making a few tweaks and going forward to lead a long and productive life. Some of us can only wish of being 21 again - Not much we can do about that :slight_smile:

I was diagnosed at 21, I was very sick at the time and my fasting glucose was over 600.
However there are simple blood tests to figure this out.
The first doctor thought I was type 2 because I was 21. Even though I was underweight.
I went to the hospital the next day and was admitted with DKA and type 1.
They donā€™t really do glucose tolerance tests if they figure you are type 1. So maybe your doctor doesnā€™t know what type you are.
I would ask for c peptide and antibody tests.
At least then you will know where you are going, and you can prepare for it.
Neither type is your fault. The treatments are different though.

I was a healthy 5 year old, over 55 years ago, when I was diagnosed T1D.

If your immune system is mistakenly attacking your pancreas, slowing down insulin production (Type1), how you eat or exercise has little impact on its progression.

Limited carbs and exercise will reduce the total amount of insulin you need, but your pancreas may also fluctuate with insulin production resulting in erratic bgs. But fortunately you have Libre, and will be able to have a better sense of how your bgs are fluctuating with food and activity. Your doctor may prescribe insulin if you are spiking too high after meals, or too high overnightā€¦

For some people, they are glad when the unpredictable (honeymoon) phase is over, and injected insulin allows more consistent bg control.

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I would ask for a C peptide test and an antibody test. If itā€™s positive, itā€™s a definite sign of type 1. There are a few people that test negative but donā€™t make insulin and they donā€™t know why. The C-peptide test measures how much insulin you are producing. Low or low normal are a sign of type 1, high or high normal are a sign of type 2.

Type 1ā€™s (before taking insulin) can have too lows along with highs while in the honeymoon period or reactive hypoglycemia can. But hypoglycemia can also be the precursor to type 2. Which is why the above tests can be really helpful. The honeymoon phase in a type 1 is the time period where you are still making insulin but things are starting to go awry and you donā€™t always make enough. I would be hesitant about insulin yet with all the lows you are having.

Eating healthy has nothing to do with stopping becoming a type 1, but if you are the slightest overweight they love to put you in the category of a type 2. 38% of type 1ā€™s are misdiagnosed as a type 2 at first, I was, Exercise is extremely healthy for a type 1 or a type 2, but with a type 1 it makes you more insulin sensitive, hence it can cause lows.

Iā€™m so glad you have a Libre! Itā€™s so helpful!

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The above suggestions are very good, as well as the personal advice. The C peptide test determines how much insulin you are producing that is converted to an active form, producing the C peptide as a by-product. The antibody test will determine if insulin is being released. The erratic BG is likely to to being in the honeymoon period, where you will experience swings in insulin production. Lows are often accompanied by highs, often delayed, due to counter regulatory hormones and dysfunction of insulin production and or release. The glucose tolerance test will test how fast and how great your response to a high BG.
The fact that you are active and exercise often can prolong the honeymoon period; as an example when I was dxd in '60s I was active in Scouts, prolonging diagnosis.
At this point you are anxious to have a diagnosis, and get back to normal. But until you are out of the honeymoon period it will be difficult to get you regulated.
Patience, patience.

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The C peptide test came back at 2.6 but I wasnā€™t fasting.

Thatā€™s a normal c peptide. Does not look to be type1 unless you are a slow burn like people with LADA
The antibodies test would clinch it though.

I donā€™t believe fasting makes a big difference in the number and in the diagnosis of a type 1. It might vary a little, but I donā€™t think youā€™re going to fall or get close to or into the low normal or low range.

But it does seem high, which means you are producing lots of insulin.

Libre2 alerts n real time now you can set a high and low alarm.

Hypoglycemia w/o insulin runs in my family. It is a rarity since it is supposed to be recessive but I did find a medical study on another family that was similar. I have had it all my life was ā€œofficiallyā€ tested for it at 21 and out of 3 generations at least I am the first T1/LADA. Went through a few years of you are T2 but still having Hypo events and then the T1/LADA diagnosis 2 years ago at age 59 and I have to be real careful because I will still drop into Hypo very easily and very fast. My Endo doesnā€™t get it but I dont really worry about it and just deal w/ it on my own. I have had normal and very ow C-peptide results so you might have to get it done more than once.