New diabetic still waiting for diagnosis and prognosis (likely type 1)

[Spathiphyllum]

Regarding the test results: The thing is, if your blood glucose is going up to the 20s despite eating low carb, your body is definitely producing far less insulin than normal! So your C-peptide test-- which measures how much insulin your body is producing-- is bound to come back low. For practical purposes, you will definitely need to inject insulin, whether your autoantibody test comes back positive or not.

The main thing at the moment is for you to avoid going DKA again!! And to try to take the edge off the crappiness. ; )

You say "if I don’t eat normally they won’t know what dose to put me on". But, if you keep a record of:

1) what you are eating, and when;
2) how much insulin you are injecting, and when; and
3) what your blood glucose levels are, and when--

then your team will be able easily to estimate how many carbs you are consuming, and they will see clearly, unquestionably, that you need more insulin.

As Barbara says, it may be that you need more basal-- that's the once-a-day (so much terminology to learn!! I was puzzled by so many terms in the first few weeks)-- or it may be that you need more bolus-- that's the before-meals insulin-- or both.

Presumably your team have told you that you should, every day, be checking your BG first thing in the morning, before injecting your Novorapid or eating? (If they haven't told you this-- definitely do it! And record the reading, until you get your CGM which will record it for you.)

The main limiting factor with basal insulin is hypos, and the main worry is nocturnal hypos.

If your BG is high first thing in the morning, your team will doubtless first of all try increasing your basal. They will want to do this little by little-- because a big increase in your basal might 'overshoot' and give you nocturnal hypos.

(I had the opposite problem, but the same principle applies. On the day I was diagnosed, they started me on 10 units basal, no bolus; instructed me to take BG readings first thing in the morning and then 2 hours after each meal and also at bedtime; and then my DSN rang me up every day. They kept having to reduce my basal because my readings first thing in the morning were hypo or very low; I've ended up with basal 1.5 units.)

Once your basal is stabilised at a 'Goldilocks' level-- not so much basal insulin that it causes hypos, nor so little that you're constantly hyperglycaemic-- your team will be able, from your records of what you're eating and what your BG readings are, to form a starting-point guess as to what your 'insulin-to-carbohydrate ratio' ('ICR') is.

This means how many units of bolus insulin you need to inject for each X number of grams of carbohydrate you eat. We all have our own personal ICRs, and we can only find out what it is by trial and error! (And for many of us it varies by time of day ... and it can change over time ... and it often needs to be tinkered with to account for the effects of exercise, or stress ... but we'll cross those bridges later!)

The BERTIE course suggests starting with an ICR of 10, meaning 1 unit of insulin per 10 grams of carbohydrate, and adjusting as needed:
- If, after the meal, you go hypo-- your ICR needs to be lower, say 1 unit of insulin per 12g carbs (so you are injecting less insulin for the same amount of carbs).
- If, after the meal, you go hyper-- your ICR needs to be higher, say 1 unit of insulin per 8g carbs (so you are injecting more insulin for the same amount of carbs).

Obviously-- don't tinker with your bolus until your basal is settled, and until you've discussed it with your team! This is just to let you know what's likely to happen over the next few weeks/months.

In the meantime, until your insulin regime gets settled: Do you get any exercise?

Moderate intensity aerobic exercise, like brisk walking or slow jogging, reduces BG levels. The reason for this is a little complicated! But, basically, once you've been (for example) walking briskly for 10-15 minutes, your muscles start using a mechanism which enables them to suck glucose out of your blood without relying on insulin.

For people without T1D, this is not a problem-- the normal pancreas responds to this by stopping production of insulin until it's needed again. But, for people with T1D who are injecting insulin-- once your insulin regime is settled, this magic muscle mechanism becomes a bit of a pain! Because, once your long-acting basal insulin is in your body, it's in-- there's no way of stopping it temporarily. So we either have to reduce our bolus insulin for the previous meal or boost our carbs before and/or during our brisk walk or slow jog to prevent going hypo.

However, at the moment-- while your insulin regime is not yet settled, and you're having hypers which make you feel crappy-- try a brisk 30-45 minute walk. Do record it, too, so you and your team can see the effects on your BG readings.

This helped me a lot when I was at your stage! Physically and mentally. (However NOTE: high intensity aerobic exercise and 'resistance' exercise tend to raise BG levels; so, for the time being, do not, for example, go weightlifting!) All best wishes; things will get better.

 

[AnniB]

Thanks for all the information and context. I was hospitalised on Friday and discharged on Sunday with no history of diabetes so the most I’ve had is a 10 minute training and guidance on testing and injecting insulin. I was discharged on 10units Lantus and 4mg Novarapid (3 times day before meals). I’m now on 12units after calling the diabetes nurse team and have guidance on how to correct if I need to - which they didn’t give me when they discharged me, just told me to call with my readings a few days later which I did. My glucose yesterday was up to 27 and thankfully now they’ve explained how to bring it down (Diabetes nurse team at my local hospital). My GP diabetes specialist can’t see me until 29th so just trying to figure it out in between. They’re also waiting for all my results to come back but my HBAC was very high at 96. So at this stage I’m off work recovering and trying to stabilise to good levels. I don’t yet have a formal diagnosis ie they said could be a combo or rarer type. Levels are muchbetter today. I also ordered the G7 a couple of days ago and have that today - it’s already made an amazing difference and will remove some of the anxiety. I’m tracking everything and think it will just take me a little time to figure out my body and what does and doesn’t work!

 

[everydayupsanddowns]

Glad you’ve had a bit more guidance from the hospital now @AnniB

And hopefully this, and information from the CGM will help you adjust your doses to bring your BG levels down gently.

Let us know how things go. 🙂

 

[Proud to be erratic]

Hi @AnniB, I'm far from the most experienced person on this site and I'm T3c (=T1 + extra). So I read many threads to broaden my knowledge and I also have a great-neice who was diagnosed as T1 earlier this year. So your story resonates with her recent experience.

My glucose yesterday was up to 27 and thankfully now they’ve explained how to bring it down (Diabetes nurse team at my local hospital). My GP diabetes specialist can’t see me until 29th so just trying to figure it out in between.

I would just gently caution you that most GP Surgeries have a Nurse within the Practice who has the overview of all patients with Diabetes. In general such patients will be T2, since the National Institute for Clinical Excellence (NICE) Guidance says T2 should be treated by GP Surgeries and T1s by Hospital Specialist Teams. The consequence is that generally GP Surgeries do NOT have a good understanding of T1 "nuances", but are much more aligned to T2 treatment. In so many ways the treatment is sufficiently different for this to make sense. However, not ideal for all T2s.

So regarding insulin and CGM matters (and to manage your expectations) don't anticipate that your GP Surgery Nurse (frequently called the Diabetes Nurse) will have that skillset. You might be lucky and find that the Surgery does have this capability (unusual) or they have a Diabetes Specialist Nurse (DSN) who visits that Practice periodically; in which latter case rightly called the GP Diabetes Specialist.

But your appointment should be most helpful in meeting that person, developing a working relationship, since you will probably need the help of the GP Surgery Diabetes Nurse for many of the other things that we insulin dependent folks need, such as periodic blood tests for HBA1c levels, for "toe tickling" (checking against a possibility of neuropathy), for checking injection sites for build up lipids that obstruct the injection (and possibly with that advice on injection technique as well as alternative sites) and also someone who might feel able to focus on your particular needs if you are unlucky enough to need antibiotics for an infection or such-like. There seems to be no rationale across England about who does the various more general medical checks for people with diabetes - the Hospital Team or the GP Surgery.

So as part of your appointment on the 29th, you might want to go armed with a modest written list of questions, including who does what between the Practice and the Hospital and can you set up repeat appointments for such things the Practice will do? I write my questions down in a notebok, let the Health Care Professional (HCP) know my agenda and when whoever is seeing me wants to go "off piste" I remember what I want from the appointment and gently get back to my agenda. I take that same notebook to my next meeting; it helps cross-referencing that what is being said now matches what was said last time!

My experience was that, perhaps because of lockdown it was 18 months before my GP Practice accepted that they should have been checking my HBA1c, then agreement on toe tickling, etc. Our Diabetes Practice Nurse is charming and down to earth. She started to advise me and then realised she knew nothing about T3c, little about insulin and I didn't need that sort of help. During my most recent visit she saw a CGM sensor for the first time; she generously overran the appointment to see what Libre 2 did, typical readings and how I use the Reports, etc.

I also ordered the G7 a couple of days ago and have that today - it’s already made an amazing difference and will remove some of the anxiety. I’m tracking everything and think it will just take me a little time to figure out my body and what does and doesn’t work!

CGM is so great and the G7 will be giving you true continuous readings; most of us with Libre 2 have to scan to get readings, often called flash CGM, and one's Libre results can/ are sent by wi-fi to a Web based data hub which provides further analysis and other reports - all of which can be accessed and shared by my Hospital based Team.

But too much CGM can make you obsessive: feel you need to watch it continuously, to respond to any tiny variation and to make one aspire to unrealistic expectations of perfection. If I may suggest initially take most note of the trend arrows, rather than the figure displayed. Take a few finger pricks, but ONLY when the trend is level and for more than a millisecond(!), say at least 15 mins, to get a sense of the correlation between actual meter provided BG and interstitial BG provided by G7. I set my only 2 alarms, one for high and one for low (I think they should be called Alerts not alarms) at 5.6 for the low and when it alerts me I try to take a measured view on what response is appropriate. If the trend is gently down I reset that one low alarm to 4.8 and if that alerts me again I'll take a snack, such as a plain biscuit (or not chocolaty) and become much more vigilant about heading off hypos. When my high alert occurs I respond with a correction ONLY if I haven't got insulin already on board from a correction within the last 4 hours; it's very easy to 'over-respond' and 'stack' insulin, making one's overall BG hard to manage and risk plunging too low. But I also use anaerobic exercise to nudge my BG down as an alternative or to supplement my correcting dose.

As you astutely say, "there is a lot to figure out in between". Good luck with it all.