I appreciate the support.
You are welcome. This thread is galloping along, with added nuances and insights. I'm struggling to keep up, it must be challenging for you also! I'll try and answer this post following your narrative here.
Yes I'm on novarapid, usually 3 times a day for meals and a few more times for corrections. Generally taking about 4,6,6 doses for meals with ratios different throughout the day.
4, 6, 6 units, total 14 per day (generally) for perhaps 200-250 gms carbs is not so dissimilar to myself.
I have 6.5 units for my big breakfast of 104 gms (this 13 units for my food ratio, reduced by 50% for my planned activity =6.5); I now rarely wake high so rarely need a correction before b'fast. But need 45mins pre-bolus.
For lunch 4, 5 or 6 units (@1:10, with no adjustment for activity - but a correction added if needed). 20-30 mins pre-bolus. My activity may or may not be what I envisaged when I woke up. So I'm now responding to what is happening not what I anticipated. Hence my sense of sugar surfing. I may have had a snack of latte and a biscuit if I've been low; I never correct (so don't stack) within the 4 hrs if a little high.
For dinner 6, 7 or 8 units, plus a correction if needed. Pre-bolus 15 mins; BUT if I'm high and need a correction I NEVER eat until I'm below 8 and have a downward trend. I have found that my resistance to insulin when above 8 is stubborn and if I eat too soon then I simply never get below 8, often not below 10. This is tiresome, a cause of friction, yet acceptance by by us both that it has to be so. We sometimes end up eating the same meal, but an hour apart!
Typically 18 units for food, plus corrections.
I only take 1 further correction around midnight if I've got it wrong and am still high. So normally only 3 or max 4 NovoRapid doses in any one day.
I wonder if your extra corrections are premature and part of the roller coaster problem.
I'm on levermir once a day before bed, 5 units.
I was on Levermir 2x daily, 9 or 10 units each time. I asked to go onto a single basal and was moved to Tresiba; this was my 2nd big step in taking ownership of my DM management. [The first was carb counting, moving from defined fixed doses and exploring meal ratios]. My c.20 units of Levermir became initially 16 units of Tresiba, steadily reduced and now 10 units 1x daily at 8am; probably one more tweak to 9.5 now I have a half-unit pen and disposable cartridges for Tresiba.
Tresiba is a long lasting basal, up to 40 hrs profile, so 10 units daily stack with each new daily dose. Hence it is described as inflexible and adjustments take up to 3 days to come into play. This suits my lifestyle and, broadly, fixes one variable. My basal is optimised for steady nights.
My first HbA1c was 99, then 56 a month later, 29 few months after that and back in March 30. TIR for 3.9 to 10 range generally 95%
As others have said - wow. You are miles better than myself. I think your DM management is questionable, not because it is bad (far, far from it) but it is not realistic. Your expectations are simply too demanding on yourself and this is (clearly demonstrated by this thread) dangerously stressful.
Stress is a major factor causing BG elevation. That is a fact. What is not so clear is putting that into numerical terms; ie how much extra insulin is needed to manage this sort of stress.
, the other 5% usually spent either in the low or high end, I have weeks were that 5% its all low then all high. Those blood results might look good but its mainly due to the amount of lows I've been having, for instance I've had a few 1.8s.
Yes, understood. We all get Libre "statistics" that seem to mislead; and it's frustrating, eg when false compression lows during the night show as low glucose events which weren't actual hypos. But in the swings and roundabouts of this there is a general averaging out. That is also true of the HbA1c figure from periodic blood tests.
But, the trick here is to accept that the stats are not mathematically as perfect as you might wish. Libre and CGMs in general are bringing a level of BG visibility that would have been unthinkable a few years back. Unquestionably better than just getting snapshots from finger pricking; but still need better ways of removing the "outliers". OR is it that we want to cheat and ignore the unpalatable outliers.
The brilliance of CGM is getting visibility of the trends. The difficulty is judging when to react and when to be patient.
Best way I can explain is probably through the graphs, can see the constant roller coaster.
I have smoothed down my roller coasters, but not eradicated them; there are still undulations. Significantly mainly in range.
Interestingly, I had an app called Diabox which took the minute by minute Libre readings and gave me a true CGM. The daily graphs on Diabox looked so much better than on Libre, simply because of the pictorial scale! Same data, possibly slightly different interpretation from different algorithms, but different visual presentation. I have a tech issue on my phone with the Diabox app, so am temporarily (infuriatingly) without it and can't send you a photo.
I realise it's not supposed to be nice and steady all the time but I feel sick and exhausted everyday from the jumps and falls. Is it normal to get the tingles in legs and feet and stinging eyes when bloods are high?
I seem to have good hypo awareness, but less so for hyper awareness. I don't get much difference in how I feel when I'm high, particularly if I'm busy. Just sometimes if I'm sitting still I feel a bit strange, and then check BG to find I've crept above 15. But this is very infrequent now.
My weight is a big issue for me. I know I need more calories but I'm afraid to add more carbs or fat.
I weigh 11stone 3-4lbs, and been trying unsuccessfuly to get to 11 stone 7lbs since Xmas. I feel too skinny. Overall my BMI is respectable. 5 years ago I was 15 stone and none of those clothes fit.
I think as far as the pancreas still working, it definitely looks like things are changing. I think it was covering for quite a bit. For instance I never had regular highs whilst sleeping but now that is becoming increasingly common.
Noted. I have no experience with this.
I have a difficult time trying to concentrate on one thing at a time.
Understood. This is a very common outcome from stress, so there is a connection to your DM in that your varying concentration might be because of DM or might be because you are stressing yourself by not managing so well your expectations! Apologies - bit harsh, but ..
I found myself short tempered (more than my normal grumpy self) and frustrated by "everything". In a determined effort to improve this aspect I've done some mindfulness training. If you asked me 12 months ago I would have said "mumbo-jumbo; lack of personal responsibility; an excuse. ..." or similar. But now, when I realise I'm getting tense I use the mindfulness techniques and can (or could) see the BG fall, as it happened on my smart watch. Now, temporarily, I have to flash scan (which is irritating and stressful!).
I already tried tackling one issue at a time at the start of my diagnosis by building on strategies. For example not exercising initially and trying to figure out my bolus and basal. Then exercising and seeing how things need adapted.
This is commendable, disciplined and frankly the only way anyone can manage up to 42 factors that can affect BG. But this needs years not months, so is inevitably work in progress. Remind yourself DM is a marathon not a sprint and you are still in training for that marathon.
I think it could be difficult to start from scratch again but might have to.
You will never start from scratch again. You can't "unlearn" what you now know. But you might find it helpful to try a different method.
You eat around the same amount of carbs as myself per day. Do you mind me asking what sort of carbs you eat?
I eat almost anything I want. Twice I've struggled to digest a great steak, so now don't do that and both Christmas lunches have proved to be too much. No panc'y means I'm missing all natural digestive enzymes, so have to take Creon capsules to replace my missing enzymes.
Do you pair them with plenty of fat and protein?
I have loads of oil and butter at every opportunity, good dollop of cream with my cereal and in my lattes. I try to consciously increase my protein in my lunches, eg tinned fish etc. I read in Gary Scheiner's Think Like a Pancreas (have you read this?) that if your diet is not deliberately low carb then one needs c. 30gms of carbs in any meal, or your metabolism will start to extract carbs from proteins and this confuses the carb ratios for bolusing. Above 30 gms this doesn't happen. I don't know what the medical explanation is for this; but I have an unwritten 30 gm carb rule! Doesn't apply to snacks; snacks are top-ups without a bolus when the BG trend is falling (when plummeting / crashed - higher GI, eg jelly babies, but still only around 15 gms as an emergency snack).
It is crazy how much I ate before that I don't now(or very small amount the odd time). Just all the nice stuff like sausage rolls, sweets, chocolate, crisps etc Could I eat them , probably but takes planning. I find its the spontaneity that diabetes robs, I hate that the most. Being at someone's house and the biscuits or cake comes out, oh no thanks I'd have to dose for that.
Absolutely understood and the loss of spontaneity is potentially stressful. I refuse to let that get to me.
My circumstances are a little different to yourself: wrong side of 70, pancreatic cancer with dreadful survival stats, major surgery and grateful to be alive. I appreciate that your perspective is pretty different: just turned 30; why me; why isn't this easier/quicker/etc .
But, I eat crisps, along with kit-kats, sausage rolls, twiglets, nuts, dried fruits like figs and dates and generally almost all of the things I used to eat. But usually as snacks, in 10-20 gm portions; which means a good wareness of how many crisps (eg a 25gmwt small bag) or a 2 finger kit-kat rather than a whole chunky. Biscuits are generally between 6-15. Unfortunately a slice of cake does need pre-planning. But when I deliberately set out to get from 15 stone to 12 stone, that too meant change in my lifestyle.
Loss of spontaneity might be lessened if on a pump.
Sugar surfing looks like a good way of managing diabetes but I think I need to go back to basics first before trying it.
Try reading Dr Stephen Ponder's book, "Sugar Surfing". I'm 20% in to my recent purchase; not enough hours in the day. So far his premise seems to be we need to try and emulate what our body does (did) naturally, ie provide insulin whenever carbs are eaten and generate or replenish glucose whenever our BG is low. One needs to be on a pump to fully do this; but CGM allows a fair degree of sugar surfing.
I don't agree with your assessment that you need to go back to basics first. You've already done that, demonstrated with your fabulous HbA1c and tir stats that you've learnt those basics. So now it's a matter of deciding how you intend to proceed .
I think for me I've been soo fixated on preventing highs that hypos haven't bothered me as much even though they should.
Agreed; in my opinion you understand where you have the balance wrong. Hypos are bad in all respects: now and for your future health. Hypers can be bad in the longer term, if left unchecked - but that means weeks and months, not 3 or 4 hours.
I'd love to get off the low high rollercoaster. By all means any advice you can offer would be greatly appreciated.
With your existing knowledge, no longer a Newbie:
Use Libre to anticipate and head off hypos; intercept from low alarm near to the max of 5.6. Tiny snack of low GI, eg 1x Nairns oat biscuit at 6gms.
If hypo check by finger prick before reacting; Libre is not reliable below 4. Treat with 5gms of high GI, eg JBs, if just low and 10 or 15 gms if v low. Be patient, resist the urge to panic and take more carbs; that only leads you onto the rollercoaster. Full 15 mins, retest actual BG, if already recovering wait, no more high GI; otherwise repeat first response.
Once hypo recovery is underway take a further low GI snack to consolidate that recovery; anything from 5-15gms; needs trial and error to find what works for you
Monitor; once you reach 8 and if trend is still upwards, get moderately active and head off the hyper. For me, after 8 is almost too late. Activity must not be anaerobic, ie not very intense; anaerobic exercise elevates BG (its an innate fight or flight response where you liver dumps extra glucose to help that fight or flight). Avoid getting stressed, which elevates BG.
The intent is to smooth the rollercoaster into undulations. It's all about control, resist panic; when hypo, you know you are there and that you won't go into a coma if you treat it - but your brain is saying do something, eat more, etc. As you trend towards hyper, intercept and don't ignore it.
Yes I'll definitely come back to this thread and update.
You know the theory and have proved you can apply it. But I think you should adjust your expectations.
Good luck, keep asking if you need further help.
