Long time T1 finally reaching out!

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MTB-Aaron

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Hi all!

Have been a T1 since age 11, now mid 30s I have always ticked along with average to slightly high control. I was finally offered to use the freestyle libre 3, after I was told by the diabetes team that I had fallen through the cracks and been forgotten to be asked if I want to try it!

I feel I have just about got by over the years doing things the way I was shown when first diagnosed, but things like carb counting, insulin ratios etc are completely new to me, I feel I may bury my head a little and carry on with what I know - which isn't much!!

Thought I would join here for some better guidance from those who actually live with diabetes, and hopefully get a better control of mine. Feel like I am a bit of a ticking time bomb sometimes.

My last HBa1c was 50, which seems much higher than I see on a lot of other posts on here, and that's the lowest i have ever had it, though never higher than 60, so high but stable.

Look forward to speaking to you all,

Aaron
 
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Welcome @MTB-Aaron 🙂 I’m glad you’ve finally got the Libre. It’s a big help, isn’t it? I don’t think your HbA1C is that high. Remember that lots of people here are Type 2 and/or prediabetic. Remember too that people will post a great HbA1C but not reveal an awful one. That’s human nature.

Sorry you fell through the gap for carb-counting. That must have made things tricky. Were you on fixed doses of insulin?
 
Crikey 50? I dream of 50. Sounds like you're doing fine. Since my honeymoon period ended 30 odd years ago I think I've hovered around 60 or just under so I know I could do better. Libre is a whole new challenge but one I wouldn't be without now. Now I've gotten to grips with it my TIR is mid 70s so hope to see an improvement in my HbA1c next appt.
 
Hi, thanks for your reply,

Yes it's a massive help, though for some reason I find myself turning off the alarms and reverting back to going by feeling! Guess a hard habit to break.

I was shocked at first at how much carbs did effect the readings! Hence now the interest in learning a bit more about it all.

No I have been varying my insulin dosages or years, but have probably been over compensating with insulin causing yo-yo effects all the time!

Have always worried about things like cholesterol and blood pressure, which seems to have crept up over the years, though diet is good and exercising 3 times a week...
 
Peely66 said:
Crikey 50? I dream of 50. Sounds like you're doing fine. Since my honeymoon period ended 30 odd years ago I think I've hovered around 60 or just under so I know I could do better. Libre is a whole new challenge but one I wouldn't be without now. Now I've gotten to grips with it my TIR is mid 70s so hope to see an improvement in my HbA1c next appt.
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Haha thanks, but I do suffer from yoyoing quite a lot, lows pretty much every day, so I fear it may just look good at 50, but having got there without being stable, just averaging out.

Fingers crossed you get the results you hope for!
 
Ah, the dreaded diabetes rollercoaster @MTB-Aaron ! We’ve all ridden the hideous thing! Do you know why you’re going up and down? Are you correcting too much or overtreating hypos, for example? What insulins do you take?
 
Feels like iv never got off that ride! Sometimes yes, for example if I have been to the gym etc, but other times it will just shoot up and I will struggle to see why. Definitely have been over treating and injecting over the years, but since having the libre I feel I have a bit more control of that.

My main things is if my sugars are rising, say at 14.0 already with the indication arrow pointing up, so I know they are rising, knowing how much to inject to bring them down and then stable, I seem to just drop and never flatten out so end up having a hypo. not sure if that's normal across the board or if I am doing anything wrong. Will raise with my diabetes consultant, but trying to get an appointment is ridiculous... lucky to get seen once a year.

I am injecting Novorapid and Tresiba.
 
If the Libre says you’re 14, you could very well only be 11, as it’s not so accurate at high and low levels. Do you check with a fingerprick before correcting? Also, if you’ve eaten recently, you have to allow for your Novorapid bringing it down. If you correct in that situation without allowing for that, you risk a hypo.

Have you done a basal test? I know Tresiba is a bit different than normal basals, but could it be at the wrong level?
 
MTB-Aaron said:
Hi, thanks for your reply,

Yes it's a massive help, though for some reason I find myself turning off the alarms and reverting back to going by feeling! Guess a hard habit to break.

I was shocked at first at how much carbs did effect the readings! Hence now the interest in learning a bit more about it all.

No I have been varying my insulin dosages or years, but have probably been over compensating with insulin causing yo-yo effects all the time!

Have always worried about things like cholesterol and blood pressure, which seems to have crept up over the years, though diet is good and exercising 3 times a week...
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Your HbA1c does not seem high. The target I was given was stay below 58.

With just the finger pricks we had no idea what was going on between meals.The first sensor shows us so much extra information. This can be used to adjust timing of blouses and see the impact of certain foods. I was amazed how spiky my levels were with porridge. I have changed my breakfast now.

Lots of experience to tap into on here. Keep the questions coming.
 
MTB-Aaron said:
My last HBa1c was 50
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There's nothing wrong with 50! The default target is 48, but we're most not expect to actually hit that. (I think my lowest has been 49, but low 50s is more normal.) The cutoff for HCL is 58, which (together with the other smaller groups) is expected to qualify about 70% of people with Type 1, so those of us who routinely have HbA1c under 58 are in the minority.
MTB-Aaron said:
I feel I have just about got by over the years doing things the way I was shown when first diagnosed, but things like carb counting, insulin ratios etc are completely new to me, I feel I may bury my head a little and carry on with what I know - which isn't much!!
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If they haven't already mentioned it, structured education (including carb counting and things) is recommended by NICE so you ought to be offered that. (DAFNE is the best known, but local areas sometimes have different ones.)

I also got missed (I was diagnosed in 1981), and was offered a convenient course full of other people who'd missed out (but who'd had diabetes for years).
 
That's interesting to hear, I don't know any other diabetics, so this information is very refreshing! I shall enquire about those courses too.


Inka said:
Have you done a basal test? I know Tresiba is a bit different than normal basals, but could it be at the wrong level?
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I have done one of these recently, all seemed to be OK, so I know the background insulin is doing the right things. But i haven't done any finger prick tests to verify the Libre 3, that could be a good place to start, thank you.
 
One of our members @helli wrote a really good post about the limitations of CGMs here:

H

Thread 'CGM limitations and precautions'

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

MarinaDE said:
My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.
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If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...
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I always found the Libre was quite inaccurate when I was above 10 or so. It usually read a lot higher than I actually was.
 
Welcome @MTB-Aaron - to achieve an HbA1C of 50 with no formal education is brilliant, although if you are having a lot of lows the results may be a little eschewed - you definitely know your own body and are doing everything right - but you are entitled to structured help as previously noted - I'm only 2yrs in to diagnosis and found that the DAFNE course I did earlier this year a great help - you have to be a bit careful with CGM though - my last sensor was literally saying I was hypo (or close to it) all day and I had no symptoms which was a good reminder to check with Finger prick (I ditched the sensor with 3 days to go and now back to as expected levels) - This forum is excellent for talking about your diabetes with people who have had similar experiences and don't be afraid to ask any questions - everyone is really friendly here (it's been great for me) - Good luck Aaron
 
Welcome to the forum @MTB-Aaron

I followed a similar path to you over a decade ago, where after 20ish years of muddling through in my own way I started connecting with others online and completely reworked my diabetes management. For me the trigger was a particularly nasty hypo, rather than your fancy gadget, but I have to say that comparing experiences with others online was a complete revelation! I wish I’d found spaces like this way earlier 🙂

If you’d like something to refer to in terms of getting your head around ratios, factors, basal checks and the like you might find either of these helpful

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - Don’t be put off by the title. This book is relevant to people with T1 of all ages!
 
everydayupsanddowns said:
Welcome to the forum @MTB-Aaron

I followed a similar path to you over a decade ago, where after 20ish years of muddling through in my own way I started connecting with others online and completely reworked my diabetes management. For me the trigger was a particularly nasty hypo, rather than your fancy gadget, but I have to say that comparing experiences with others online was a complete revelation! I wish I’d found spaces like this way earlier 🙂

If you’d like something to refer to in terms of getting your head around ratios, factors, basal checks and the like you might find either of these helpful

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - Don’t be put off by the title. This book is relevant to people with T1 of all ages!
Click to expand...

Thank you for the information, I shall definitely look at those.

Already looking into some of the suggestions from above and learning so much more that I wish I had known earlier!!
 
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