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Type 1: Goals ramble

vanarchre

Well-Known Member
Messages
50
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone,


I am a type 1 diabetic and have been for 15 years. My last HBA1C was 6.2 (although I could have sworn they initially said 6.7), I test several times a day and I am generally well.


I am, however, confused as to what is actually a 'good' level of diabetes management.


There seems to be a wealth of contradictory information out there. I know that if I were constantly 16 and doing nothing about it that this would be problematic but I'm less sure as to when things are actually good.


I know the NICE targets, for example , but don't really know whether falling out of those targets is a big problem. Or how frequently doing so would be an issue. It seems rather unclear.


My main concern is with high blood sugar levels because I have always felt that any doctors that I've seen have skimmed past this and focussed on hypos. I do understand the issues regarding hypos but I'm worried that doctors can be too short-termist. It strikes me as odd that no medical professional has ever even mentioned a low-carb diet to me.


OK, so maybe I'm a bit unfocussed here. The point is just that my doctors have always been happy with me but I'm not sure that I can completely rely on that. Obviously I aim for no blood sugar level spikes but I have no real sense of how normal it is when they happen. Different points on the internet give different viewpoints with different levels of authority (and with little way to check the authority is warranted).


I do not encounter other diabetics regularly. I am not sure if forums like this end up being self-selecting - that is to say that only the most dedicated diabetics post here and then readers end up panicking because the results are so good even though they are not really a representative average. I recently had a Freestyle Libre trial and when returning it they plugged in a woman's device and nobody seemed phased by the whole days spent in the teens.


OK, I'm definitely unfocussed here. Apologies. The answer is possibly that nobody knows exactly how much potential problem is caused by an X% increase in one's HBA1C or by going over 10 one extra time each week. But perhaps you have a better idea than I do? As it is I often find myself confused and frustrated (although I'm sure that I'm not alone there).
 
Hi @vanarchre

The Diabetic Control and Complications Trial basically sets the standard for your risk of developing diabetic complications according to your HbA1c. The higher your HbA1C, the greater the risk of developing complications, a small reduction in HbA1C can give a big reduction in the statistical risk.

NICE target for HbA1c is 6.5, so at 6.2 you are well within target and, because it is a curved chart, reductions in HbA1c won't make an awful lot of difference to your risk.



HbA1c is the measure for how "good" your diabetic control is. And medical staff can see a HbA1c in target and not look too far beyond that to see how you got there. However, it is increasingly being recognised that HbA1c is rather too blunt a tool to measure glycaemic control - it doesn't tell us anything about variation, the swings, the spikes, the hypos. Which are all pretty important to risk of complications - it is becoming recognised that high glycaemic variation can cause its own damage, that time over 7.8 is damaging, that frequent hypos have a putative risk of impaired cognitive function.

DCCT will tell you how much extra risk you are at by an X% increase in your HbA1c. But no, I don't think anyone can answer how much risk is caused by going over 10 once a week. I'm sure someone will be along to have an educated guess though.

Perhaps as flash glucose monitoring and CGM become more widely used this data to do statistical risk anaysis based upon actual blood sugar readings will become available. But that would require another DCCT study using patients with CGM and that was a massive, long term clinical study. And there's also the issue that if a patient has a CGM and can see the swings in real time, they are likely to take steps to avoid them (I flipping well try my best to anyway, although woefully unsuccessfully today) so results might be somewhat skewed.
 
Thanks for the responses! Those HBA1C figures are useful.

I do still find it confusing. Is it standard that medical professionals are too easy about high levels or is that just my perception?

I see websites out there stressing the importance of getting the HBA1c below 6 and minimising any exposure to pushing above 7.8. Obviously this would be great but based on the information that I currently get from nurses and doctors I don't see how this is achievable. I might push for a pump after reading stories on this site.

To me it seems hard to know when I have actually reached acceptable control.
 
An interesting comment my DSN said in a forum recently, was that the target BG/A1c set by NICE is set higher than what is deemed ideal, simply because if the target is too tight, people are at risk seeing it as unachievable and giving up. I don't know if this was her perception, or if she knew it as fact, but I have taken that as reasoning to use the target as just that, but to continue striving to get it lower. Before pushing for a pump, you might find the books "Sugar Surfing", "Think Like a Pancreas" or even "Pumping Insulin" useful to help as a start.
 
paulliljeros said:
An interesting comment my DSN said in a forum recently, was that the target BG/A1c set by NICE is set higher than what is deemed ideal, simply because if the target is too tight, people are at risk seeing it as unachievable and giving up.
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She was incorrect. I've spoken to the patient representatives who were on the NICE Guidelines panel. The proposed the current level as that was what the DCCT evidence said posed a similar risk to diabetics as that to normal people. The healthcare bodies wanted to post a higher level.

The other factor, as @catapillar has stated is glycaemic variance, and that's where it starts to get a bit stickier. There has long been guidance that you should aim to have a standard deviation of no more than 1/3rd of your average glucose level, as this is less damaging, however the evidence has been scant. We are starting to see more evidence that poorly controlled levels affect the nervous and microvascular systems due to the oxidation effects of rapidly swinging glucose levels.

One of the main factors of this has been the increase in use of CGM which demonstrates that people who look like they have good control on blood tests have had far greater spikes than was realised. It's also fair to say that you might have the best blood glucose levels in the world and not avoid diabetic complications as the physiological changes and your genetics can also play a part.

It's still quite a well-misunderstood area gaining greater research, but it's totally fair to say that limiting the peaks and troughs along with a lower Hba1C is a good way to manage the risk of whatever may come.
 
I'm having this problem with my daughter (16mo) and her team, I had to really push just to get acknowledgement that huge spikes above 14mmol are a bad thing even if they do come back down in a few hours! After an infuriating meeting with the dietitian where she acted like it was ludicrous to feed her low carb foods I'm left in tears worrying about what effect this is having on her and why they only offer a pump as the fix
 
The only way I can avoid all the spikes and drops is to eat low carb high fat

I asked my dr why diabetic guidelines are set higher than nondiabetics and he said it was so people using insulin effecting meds or insulin wouldn't try to get their bs too low and it would help avoid hypos. I prefer to stay in non diabetic ranges as often as possible but I have a very strict diet that most people would find too restrictive. Glad I love my food. It's not restrictive to me MOST of the time.

I like the book the Bernstein Solution and his ' laws of small numbers' works great for me.
 
Tricky stuff here..

My answers are my own opinions so there is that.

'Good' blood sugars will remain in the 'non diabetic range' when they leave that range its a hard argument calling them 'good'. the further out they go, the worse they are. Any spike is a bad spike, so the best thing to do is have none lol

Doctors like to play the "do the best you can' card a lot because its so much easier on them as lots of why we go out of range are at least partially mental (we get depressed, unmotivated, lack of will power, ignorance, etc) and its not really their jobs to be a personal emotional coach to every patient so they usually just seem to say 'try your best'.

There are many people who claim HBA1C is the gold standard for determining if you are 'good diabetic' but I personally am at odds with this notion - my HBA1C has been constantly in the 5s and i can honestly tell you I can spend many hours each day in the 8-10 range, and have many post meal spikes so I you had to ask me I wouldn't claim to be a 'good diabetic', but my doctor sees the HB1AC and pretty much blows off the appointment because its in the 5s.

I am starting to believe more and more that the gold standard should be the deviation from normal - how often and how far do your sugars leave that range (high and low) and we should all be working to get that deviation as low as possible

I even spent most of my last appointment trying to figure out if my blood tests have been constantly wrong because I have trouble believing I have an HBA1c that low for the last 2 years - I am convinced something is not right lol

What you need to determine is 'What is good enough for you?' Some people are fine living at 8, some people wont stop until they are a flat line at 4.5. Empirically, the latter is better, but that's much much more work. The healthcare system seemed to pick a 'realistic' range that they feel optimizes effort with reduced risk of complication and ease of learning curve - I have been starting to just ignore their guidelines and just do my best to stay in the 'non diabetic' ranges because thats what my body would have wanted before my pancreas giving out lol

To each his own, don't take this advice, just my own thoughts and experiences
 
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Some interesting responses. Thank you!

I do understand not setting a limit that people might find completely unobtainable. I heard that they were going to recommend 7 fruit and veg a day instead of 5 but lowered it because people would give up. Nevertheless, it would be nice if when one presented oneself to a medical professional as somebody willing to take things seriously that they got more in depth with you. Personally, I have never felt that a medical professional was trying to mislead me, just that they were overly reliant on what they were told. As a for instance take the GPs who keep on losing it when I tell them that I test my blood more than four times a day.

I would like to keep more steady regardless of my HBA1C but it seems that there is not much hope of getting advice regarding this from a medical professional.


Well that seems impressive to me. May I ask whether you use a pump/CGM?

I suppose that staying in the non-diabetic range is obviously for the best but it's hard to know whether smaller deviations are a big issue. Somebody who drank a couple of glasses of alcohol a day would be outside of the standard blood alcohol range for a while but in that particular case it would not make a lot of difference. Not sure how well that works as an analogy!

shivles said:
I' I'm left in tears worrying about what effect this is having on her and why they only offer a pump as the fix
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Very sorry to hear this. I have no experience dealing with children but wish you the best.
 
@vanarchre - Thanks... for the last year I have been using a Vibe and Dexcom system, but before that I was MDI and my A1C has not changed any since being on the pump. Just check before and after every thing you eat, and then randomly throughout the day and you should catch any issues and if your correction dose is accurate you shouldn't stay out of range for very long - also i do correct for every reading out of range - if i Test and get a 7, i give a correction dose to take me back to 5... The ol' ABC's "Always Be Correctin' lol
 

How interesting, especially taking a correction dose when as low as 7. I check before and after eating and at other times so I think that I tend to catch deviations fairly quickly. One of my struggles is that my blood sugars tend not to move around a fair bit throughout the day even if I do not eat (not sure how normal this is). I did a Freestyle Libre trial recently but actually found that it got me a bit over-focussed. I tried to correct for hypers so much that I had a large number of hypos. I would assume that was just a personal teething issue though. The Libre also gave higher results than my regular meter which was probably a factor.
 
I personally try to keep my blood sugar / HBA1C in non-diabetic ranges at all times. Last few A1C's have been in the high 4's with only minimal hypo's.

If I do develop complications then at least I can say I've given it my best effort and won't have any regrets over my control.

I pay no attention to all these studies that are often cited on this site or NICE guidelines. To me these levels are too high, even my endo has admitted that it's best to keep blood sugar in the range 4.4 to 5.5 at all times.
 
I am a type 2 and don't pretend to know anything about controlling blood sugars with insulin but I thought I might have something relevant to say. My last A1c was 6.7 which was a huge improvement from 10.4 and my doctor was extremely happy with it. When I told him I was not happy with it as it is still firmly in the diabetic range his response was that most of his diabetic patients were always running in the teens so I was doing fantastic. The vast majority of diabetic patients lack the knowledge or interest in controlling things to a non diabetic level. They just want to eat what they want and cover the food with pills or insulin and are surprised when complications set in or just believe it is inevitable and there is nothing they can do. I watched a very good type 1 friend die in his 40's from complications with a bag of candy in one hand and a bottle in the other. He was missing most of his lower legs by then and on a tube feed. I don't think doctors even know what to do with a well educated and motivated patient as it is rare for them to encounter one. This forum is full of people successfully dealing with their disease but this forum is not very representative of the general public. You are obviously one of the smart and motivated ones. I wish you a good life.
 

[a bit off thread topic, but replying to the OP]

Yeah, i mean i don't correct at a 7 if i still have insulin in my system, but if its 5 hours after my last meal and I am anywhere above 6.5 i will give a small correction to nudge me back into the 5s. I can do this because I am on the pump and can give doses as low as 0.05units, where as if you are on MDI you would need a half unit pen to give a dose down to 0.5u.

Its up to the individual if they care that much - on a pump though its a no brainer, you already have the infusion set in might as well push a button 3 times - so thats a huge benefit to a pump.
 

OK, that makes sense. Although it's pretty rare that I go five hours without eating (apart from when I'm asleep of course)!

Wurst said:
I personally try to keep my blood sugar / HBA1C in non-diabetic ranges at all times. Last few A1C's have been in the high 4's with only minimal hypo's.
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Very impressive. I did not realise it was possible to be that contained. Anything in particular that you do that others do not?


Very sorry to hear about your friend. That must have been painful to watch happen and know that it was preventable.

Thank you for sharing that though. It does seem to be the case that a large number of diabetics partially or completely ignore the condition. That is certainly what my doctors seem to suggest. It is very sad people with diabetes do this but may mean that these are the people accounting for many of the unpleasant statistics. As I say somewhere up this thread, this forum is probably rather self-selecting and I do wonder if people can bit a bit scared thinking that the people here represent the average.[/QUOTE]
 
I VERY rarely go over 120 usually between 75 and 105. I eat very low carb, less than 20 per day and I don't over eat protein. I fill the rest in with healthy fats. My a1c has been 5.1 the whole last year. Dxd just over 2 years ago so it took awhile to sort things out.
My diet suits me as I have been VLC for well over 20 years. Since Atkins but I have refined it to suit me
 
vanarchre said:
Very impressive. I did not realise it was possible to be that contained. Anything in particular that you do that others do not?
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Lots of trial and error, careful bolusing and lots of exercise. I only low carb in the mornings / lunch time and am more relaxed diet wise in the evenings. Evenings I'm more sensitive to insulin after exercise so can get away with some higher carb stuff (mainly unhealthy stuff like chocolate bars and cake etc).

I try to keep my BS in the 4.4 to 5.5 range at all times including after meals , i.e. no spikes up to 200 mmol or whatever the NICE guidelines are. It's like hybrid Bernstein method but without the restriction of only 30 g of carbs per day (I followed his method for almost 3 years and it's not pleasant).

More than possible to that contained but I'm sure someone will be along to mention hypoglycemia, DVLA etc etc
 

Interesting. I honestly did not realise that it was even possible to operate within such a range.
 

Most doctors are Educated to the average patient that haven't Got the strength to change much , But it's a pitty for all those that wants to do their maximum to be as Healthy as possible . To be a doctor is a job and sometimes They just relay on routines and probably dont care enough and do NOT se the individual capasity I Think you should write down your worries and ask directly
 
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