MIDD/MELAS

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Yellowgenie

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Hi everyone!
I am new to the forum. I have MIDD/MELAS, diagnosed many years ago when I was asymptomatic. Now at the age of 52, it's really hitting home :(. My whole family (on mothers side of course) are diabetic (type 1 & 2), deaf and various other problems too, all related to Mitochondrial disease. I recently had a stroke which affected my field of vision so no more driving and I am currently struggling with high BG readings in the evening (on twice daily humulin m3)
 
Hi and welcome.

So sorry to hear about your health issues and the impact they are having on your lifestyle.
As regards your BG going high on an evening. Do you know when they are starting to rise and what sort of levels are you seeing and is this before or after your evening meal?
How long has it been happening and have you contacted your Diabetes nurse for advice?
It may be that you could adjust your lunchtime menu to help the situation and maybe have less carbs, or perhaps a more flexible insulin regime involving 2 insulins a long acting and a meal time insulin would work better for you. Might not be so easy getting your nurse or GP to agree to it though.... always worth a try though... No harm in asking!
 
As not a particularly common form of diabetes, can I firstly ask who is responsible for looking after you and it - your GP or a hospital diabetes clinic? I would sincerely hope it's the latter because they are far more expert than 99.9% of GP surgeries.

I have to agree that the continued use of Humulin M3 is in question though it probably has worked well for you for some time. M3 is a mixed insulin combining long acting insulin (that necessary to keep the body ticking over OK in the background 24/365) with short acting insulin (to counterract the food and drinks we consume) so it's not possible the change the dose of one without the other. ..... and there are over 40 different things which can affect our blood glucose day to day let alone month to month or year to year, so it takes experience and expertise to fathom out exactly what's affecting what.
 
I have been diabetic since 1994ish, started on tablets but it soon became clear they weren't working so started on Humulin S and I, at that time I mixed them together in a syringe. Moved onto M3 in 2004/5 using kwikpens, mostly worked fine for me over the years. Last HBA1C was 52. This is only since the stroke i had in October, firstly I was getting night-time hypos so reduced evening dose which worked, breakfast readings all in range now, but evening readings highish despite not having anything different dietwise i.e nothing to cause rise during the day. Suspect it might be absorbtion problem so trying different injection sites to see if that works, that and the fact I am not getting much exercise because I am a bit nervous going out on my own (stroke caused loss of left side field of vision)
 
Welcome to the forum @Yellowgenie
I am sorry to read about the difficulties you are having.

With the mixed insulin it is a lot more difficult to make adjustments as the basal and bolus are linked. If you are in the hands of your GP for managing this it would be worth asking for a referral to a specialist team, to help you manage any changes, or a switch to a more flexible regime.

It sounds like a good plan to change injection sites so that absorption issues can be eliminated. Let us know how you get on.
 
4.4 before breakfast, injected in a different place
9.9 before lunch
3.3 this evening so i had a percy pig and having dinner shortly 🙂
 
Welcome to the forum @Yellowgenie

I had to look up MIDD/MELAS as it wasn’t an acronym I was familiar with. Gosh it does sound like you’ve got a lot on your plate.

Hopefully being able to compare notes with others on the forum (even if we don’t have the same type of diabetes), will give you some ideas, pointers, options, and good questions to ask of your Dr.

We have hundreds and hundreds of years of lived diabetes experience on the boards, so ask away with any questions.

Like others I do wonder whether asking about a more flexible basal:bolus system might give you some very helpful options and possibilities for your dose adjustments that mixed insulins do not allow.

Having said that your HbA1c is in a great place - so you are clearly managing your conditions very effectively. 🙂
 
Hi everyone!

Well, I have been injecting my breakfast dose anywhere but stomach for three days now and so far so good, evening BGs well within normal range again. Downside is cos I have no fat on my thighs, I now have a bruise despite not catching a blood vessel! Oh the joys 🙂

Hope you all have a great day!
 
I often bruise too. I view it as a small price to pay for life saving treatment and they fade after a few days.
Pleased to hear you are managing better.
 
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