No Insulin Type 1 Diabetic

I am pretty recently diagnosed with type 1. My first endocrinologist diagnosed me in October and my parent’s endocrinologist whom they set me up with seconded that opinion in March. I am concerned that he hasn’t prescribed me Insulin or glucagon and we have only had one meeting which was in march. Since I hardly know him, I am not sure how long he will want to wait before getting me on insulin.

Please let me know how long it was before you got on insulin after your diagnosis!

I was diagnosed fairly early on because my mother was familiar with the symptoms thanks to her T2 diabetic father.

I was on insulin literally the day after I was diagnosed.

But… it was caught early enough that I only needed a couple of units. Two or three with meals, just to make sure I didn’t go too high. One of my classmates in the hospital’s teen diabetic training class said “You’re taking so little it’s almost a waste of insulin.” But the nurse in charge was quick to interject that my body needed it. Gradually, as my body’s remaining insulin production capacity was destroyed and I continued to grow and to develop some resistance to artificial insulin, my requirements increased. But I needed some right from the start.

Here’s the thing. Your body typically needs about 5% of the insulin it’s capable of producing. T1D is what happens when your body gradually destroys that capacity. It could take years before anyone notices because even when 75% of your beta islet cells are gone, you still have more than enough. Being sick (cold, flu, etc.), consuming a large amount of sugar, or other circumstances can increase your need. Double it to 10%, perhaps. So if you’re down to 7%, you can be diagnosed diabetic but need little to no insulin for a while, so long as you watch what you eat and maybe exercise regularly to help. But that “honeymoon period” isn’t going to last.

I don’t know what your situation is. If you have an endo, ask him.

If you’re not having symptoms (nausea, vomiting, headaches, “sugar rush” hyperactivity, shakiness, severe thirst, frequent urination, or any of a long list of other possible symptoms - you won’t get them all, but you’ll get at least a few), you’re probably okay for now? You can get a BG meter and check from time to time, maybe.

I’m not a doctor. I’m not qualified to give medical advice. Even if I was a doctor, it would be wildly irresponsible to try to diagnose and treat you based on a forum post and no examination or anything. I can only offer general advice.

So… If you’re type 1, I’m very surprised that you’re not on insulin more than 6 months after diagnosis. That seems very unusual. It is worth calling the endo’s office to ask about that. You don’t necessarily need a full appointment right now. Just call up the secretary and say that you’d like to know why you’re not on insulin, when you can expect to start, and when you should have your next follow-up visit. They’ll check with the doctor and should let you know.

That is quite interesting, Trash Mouth @BobBelcher!

Right now, I have open before me the American Diabetes Association "Standards of Care manual for professional. The definition of TypeOne Diabetes reads as follows: “Type 1 diabetes - due to autoimmune [beta]-cell destruction usually leading to absolute insulin dependency, including latent autoimmune diabetes in adulthood”. Of the four general classifications of the several conditions that fall under the umbrella name of Diabetes Meletus. From that, and from my experience, I agree with what you are implying here, that your diagnosis - even by two physicians - is unusual. I’d be interested in learning how this diagnosis was reached, what tests were performed, especially the two-hour reading of the GTT [Glucose Tolerance Test].

To answer your question, I got my first insulin within hours - even before the results were received from the hospital lab for my first blood sugar test. When I was diagnosed, at a Boston teaching hospital, blood sugar test results were not available on the day blood was drawn. In retrospect, I probably should have begun insulin weeks [months???] before I did - when the lab test was finished, my BS was 1,700+.

And, I will ad, that the reason neither physician prescribed that you inject / infuse man-made insulin, is that you obviously [in thier opinion] don’t need added insulin.

Hi @BobBelcher . I’m surprised to hear you have not been started on insulin yet - typically the diagnosis of diabetes comes with an “insulin regimen.” People do sometimes have a honeymoon period - referenced above - where their body does produce some intermittently and unpredictably. Because of that, doctors may be conservative with dosing and allowing numbers to be a big higher than typically recommended, to allow for drops due to the body’s unexpected contribution.
“Endo’s” have various specialties and not all area familiar with diabetes - I’m wondering if the two you saw specialize in other areas? If it were me I would invest in a BG meter and keep a log of my numbers. They are available over the counter without a prescription.
You could also ask for a prescription for a continuous glucose monitor (CGM): your options are Freestyle Libre and Dexcom. Dexcom may be considered the better of the two, but in my opinion that’s because it can work in conjunction with a pump to help manage glucose. The Freestyle is a very good CGM for those who do not need that interface: I keep one as a backup in case of any issues with Dexcom and have found it comparable in accuracy.
I’m not a medical professional but recommend you keep an eye on your numbers and especially how you are feeling, as described above, and let your doctor know if you feel ill or if they keep rising - even if you feel okay. Err on the side of caution. I also suggest checking to see if your endo specializes in diabetes, and if not find one who does - specifications Type 1.

I was diagnosed as Type2 when I was 48yrs old. I was skinny. I exercised…
My meds increased. My carbs decreased. Nothing helped. EVENTUALLY, At 52, was diagnosed with LADA and started on insulin. I rely on insulin now 4 to 5x a day.I live a low carb diet.
I don’t know from your post how old you are, but it happens. I’m sorry. It sux. But you adjust.

If you aren’t on “kickers” (a t2 med) or insulin, you don’t need glucagon. Assuming your blood sugar isn’t high enough for insulin or other meds, you just monitor your blood sugar and keep a log. If you do have t1, eventually you need insulin. Good luck :four_leaf_clover:

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Type 1 diabetes is a result of slow destruction of pancreatic beta cells over about 5 years. When 90% of the beta cells are destroyed, blood sugars start rising. In 1989, the New England Journal of Medicine published a study in which newly diagnosed type 1 diabetics were put on an artificial pancreas (called a Biostator) for about 7 days, and compared them to type 1 diabetics who were not put on an artificial pancreas after 1 year. The study found the Biostator patients were producing as much insulin at one year as when they were diagnosed, whereas those who were not had ceased making insulin completely. As a consequence of this study (as well as other study), a multi-institutional study was performed around the year 2,000 to see if giving Type 1 diabetics insulin soon after diagnosis would slow or prevent diabetes progression. Not surprisingly (in my opinion), the study showed no benefit to giving insulin early. I say not surprisingly because active beta cells releasing insulin around the clock have different antigens on their surface compared to beta cells that are not releasing insulin (ie: resting beta cells)–antigens which expose these cells to autoimmune destruction.

Generally, beta cells are mostly resting between (serum) blood sugars of 70 to 90. In my opinion, without optimal diet and exercise, it is extremely difficult to maintain a blood sugar between 70 and 90 in early diabetes. An optimal diet would include whole grains, vegetables, and (in moderation) some fruits. It would absolutely not include processed sugars (which can rapidly spike blood sugars) nor artificial sweeteners. As for exercise, at least 30 minutes a day of continuous walking is an absolute essential to try to target an ideal fasting blood sugar between 70 and 90.

In my opinion, the sooner you find a good diabetic specialist who will consider starting you on insulin now (if only small amounts), the greater your chance will be of preserving long term whatever beta cells you still have left. And doing so will improve the quality of your life.

One hour after diagnosis- in 1977, by a general practitioner. He would let me leave the hospital.

Two endocrinologists, one meeting each, for two opinions isn’t a relationship with either. Does either of them know that you’ve decided that they are your doctor? It could be that each believes someone else is handling your care.

My experience is that ANY doctor who knows he’s treating a person with newly diagnoses type 1 diabetes would have him in a hospital as an outpatient for up to 3 days, he’d give a partial correction immediately to reduce hyperglycemia based on weight, and have tests started immediately to determine c-peptide level, HbA1C, and insulin dosing. If not, he’d be open to a malpractice suit - and lose.

You couldn’t graduate from a medical school in the US after 1940, or be licensed to practice medicine in the first world without knowing how to do basic diabetes management. Some people always recovered from infections. Before insulin nobody ever recovered from type 1 diabetes. They died quickly, starving to death. Insulin was a bigger breakthrough with more publicity than penicillin or sulfa drugs.

Thanks @wadawabbit, I have been using a Dexcom for almost three weeks so now my doctors have access to my numbers. I was just wondering how everyone else started their insulin journey.

Apologies for going off track. I was diagnosed in 1963 and was started on insulin right away. My dad hired a nurse to give me my once-a-day injection of pork insulin(:exclamation:) for a few weeks until my mom was confidant doing it herself.

I was diagnosed in 1960 and started on insulin right away. I recall the pork insulin; it was far from perfect and the single injection each day was impossible to control my type one, but it was all we had to work with. Our “family doctor” did his best and I doubt if there were diabetes specialists back then. But I am still alive and well so I guess he did something right…

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