Very poor TIR

[PJR76]

I'm a not particularly active type 1 with diabetic for 30 years. My most recent HbA1c came in at 63 mmol/mol (7.7%). Unfortunately, my time in range on my Dexcom device reads in the 40% areas most of the time.

Many years back I developed quite severe insulin resistance and my insulin to carbohydrate ratios were becoming unmanageable as a consequence. I think I was at 3.5 units per 10g at one point. My diabetes consultant put me on Metformin hydrochloride to help with this problem and this obviously had the effect of reducing my ratios.

I'm hypoglycaemia unaware and often times when I go hypo it takes ages for my body to get back into range. Occasionally, I've panicked because it's taken so long to rise. Extreme examples include me being below 3.0 mmol/L for many hours and hypo treatments having little or no effect. One one occasion I had consumed in excess of 100g of fast acting glucose in various different forms along with additional stabilising carbohydrates bread/biscuits etc., and still my glucose levels remained obstinately low.

Obviously, eventually over a period of more hours (normally when I'm sleeping), I have an uncontrollable hyperglycaemic state where my glucose levels shoot up to the high teens or max out the capabilities of the Dexcom software and my chart looks like the himalayas.

I'm becoming more and more exasperated with what's going on. My diabetes consultant at has declared that he doesn't know what to do with me, and yet refuses to provide me with an insulin pump because according to him my control is too good. I haven't experienced much if any positive experiences with the Diabetes department (bar 1 excellent DSN) and I am have now come to the end of my tether.

Can anyone offer any advice or suggestions.

Philip


Edited by mods to remove name of hospital

 

[Chris24Main]

Well, you have been dealing with this for 30 times longer that me, so - firstly - I'm always in awe at the amount of perseverance it takes - and aware of how little experience I actually have.

(I should also state that I am very definitely not T1 - but I was diagnosed as one for a while, so only posting on that basis)

Secondly - I'm only close to one person who has a similar story, and he's been on a pump for the last year - and his HbA1c very recently was better than it has been in decades. Game-changer is not an overstatement.

He has been lowering his carbs as well though - I see it as going hand in hand, the better the control (via the pump) - the lower he can safely bring his carbs (and thus insulin) down, and the easier the control is, and so the better the control is... and so it goes in a virtuous cycle.

So - I'm just stumped at the attitude regarding denying you a pump.
I didn't know there was such a thing as hypo-unaware; so I've learned something...

Insulin resistance is fundamentally a state of elevated insulin while at the same time having it not work properly in tissues which have become "overloaded" for want of a better word - I realise that is stating the obvious, - has your dosing rate come down any? - 3.5 units/gm would really mean that the insulin is having to work hard - so that stacks up - and the answer is obvious; you have to get the insulin resistance down, it's only the equally obvious problem of how to do that safely.

Personally, I would be looking for another consultant - I don't see how a position of "nothing I can offer" is compatible with "I can't offer this".

I have some thoughts, but they get a little too close to diagnosing, which we just can't do... I would read up on Richard Bernstein - it seems to me that you are at the other end of what he referred to as "the law of small numbers" - ie, it's easier to control things with small adjustments - and thus much more difficult when things are swinging from one extreme to another.

 

[EllieM]

Some thoughts, which may or may not be relevant. (Forum rules rightly don't let us diagnose or give medical advice so I am just putting out some suggestions. This is not meant as medical advice, just some things to think about.)

1) Do you have lipohypertrophy from overused injection sites - does it help to try new sites?
2) What's your typical insulin dose in a day? If it's high is it worth reducing carbs to (hopefully ) reduce the quantity of insulin?
3) re the hours at 3mmol/L - have you double checked with a meter (The dexcom can sometimes under read severely, and also tends to lag when you come out of a hypo.)
4) Basal rate testing. Have you done this recently? In my experience if my basal rate is wrong then my chart also can start to look like the himalayas.
5) Wild suggestion but is it worth asking for a glucagon kit to see if that will help you out of hypos if eating glucose isn't working???
6) Can you get a referral to a different endocrinologist
7) Has your endocrinologist ruled out stuff like gastroparesis for slow carb absorption?
8) I've had periods of hypo unawareness in the past, particularly when I kept my bg low for long periods and had a lot of hypos (eg during pregnancy in pre cgm days). Though my awareness isn't as good as it used to be I did get it back by keeping my bg between 6 and 12 for a while (as recommended by my endocrinologist). So if you manage to get control of your levels your hypo awareness may improve.

Personally I'd have thought you were a prime candidate for a pump, particularly with those hypos, so in your position I'd keep asking, preferably to a different endocrinologist if the current one is unhelpful.

Lots of virtual hugs