Hello
@stackingcups, I'm Type 3c: rather abruptly introduced to this after a total pancreatectomy in Feb 2020. I was adrift and totally not trying to control my diabetes for a while, but in Nov I got stuck into understanding carb counting and bolus dosing accordingly.
I increased my testing regime from the suggested no more than 4x daily to 8-10 x daily and quickly found some improvement in what had been a blatantly erratic regime. My GP tried to stop this, using the surgery nurse to tell me the increase in testing was not affordable; the decision was, unknown to me until later, supported by my Diabetes Specialist Nurse at our local hospital, who should have known better. This is not a DN who understandably is a generalist, not a specialist. If you don't have a named DSN press for this and get an appiintment with him or her as soon as possible - face to face.
I provided a polite, but strong, email with a reasoned case to my GP and from that a begrudging increase was authorised. In my opinion everyone who is insulin dependent should, if they want some control and if they are physically and mentally able, be testing at least 8x daily plus on any other necessary occasion: such as before driving and when very low or very high.
Most people using Libre get flash readings much more regularly, typically 30-40 x daily. From this they start to understand how their metabolism is responding to different circumstances. Not just what they've eaten, important as that is; but after activity (or need to eat before activity); from stress, medical or psychological; with changing weather - warmth decreases insulin sensitivity so glucose levels drop. These are just a few of a myriad of factors that affect one's BG and without true CGM one is, in truth, just guessing what will happen next. I was provided with Libre 2 in Feb 2021 and my HbA1c improved dramatically over 3 months and again after 6 months.
You are Type 3c. This is Type 1 only worse. You will have none of the normal functions that a normal pancreas provides; in particular no glucagon, the hormone that tells your liver to release glucose from its store; so no quick natural response when your BG is dropping. You need to know early that your BG is dropping, so that you can pre-empt and catch the fall before you go hypo; for me that means jelly babies at 5.5 with a falling arrow. If you are to avoid what my Endocrinologist described as "glycaemic excursions" (as if they were a holiday!) you need visibility; then you have a chance of getting good control. It takes time and I am far from there - yet. But I do feel that I understand much more and can start to interpret what I'm seeing on my phone screen.
NICE has twice advised that Type 1s should be fully supported. Part of the problem is that too many medical professionals don't know that Type 3c is Type 1 with extra problems. We are sufficiently rare that our diagnosis is misunderstood because it is not known about.
Keep to one testing meter, but hold another in reserve. They do malfunction from time to time and it's downright frightening not knowing where your BG is. I phoned the meter supplier and asked for a second, which they readily provided; they make their profit in the testing strips, the meters are loss leaders! I also pressed my DSN to change my original basic meter (from 4 Sure, provided as I left hospital) to an Accu-chek Mobile. While this is heavier to carry around, it is much more forgiving when you're hypo, trembling, struggling to squeeze a drop of blood onto a disposable strip, without smudging it and getting an error message; the Accu-chek uses a cassette, fitted into the meter with 50 test capacity. No fumbling to get a strip inserted, keeping it clean as you do that and more forgiving with a small drop. I have circulation problems and when cold really struggle to get a drop of blood onto a strip.
I'm sorry if this is a lot to take in, unfortunately that is the problem with being insulin dependent. A lot to understand, pretty quickly. There are other Type 3cs on this site, who have been managing this for a lot longer than myself. We are all different and no more so than with DM; what works well for me might be different for you. But it is not impossible to get on top of; increased testing improves visibility and thus understanding.
