Hi newbie here.

[Dillon]

Does anyone know if there is a receiver out there with a scale above 22? I'm off the scale 50% of the time, working on it but often dont know the true reading. Many thanks

 

[Lucyr]

A receiver for which device? Most devices just have one option plus the phone app though and most won’t read accurately at such high levels you are advised to fingerprick anyway. What are you doing to get levels down below 22

 

[Dillon]

A receiver for which device? Most devices just have one option plus the phone app though and most won’t read accurately at such high levels you are advised to fingerprick anyway. What are you doing to get levels down below 22

Thank you for your response Lucyr. I am newly diagnosed T1 after 5 years misdiagnosed as T2. I'm using DexcomOne which is not always accurate. FPs have taken me up to 32.5 a few times while T2 so with the DexcomOne readings still showing off the scale even though I'm now on a basal bolus of Tresiba and Novo Rapid which is trial and error ATM it worries me that the receiver only shows up to 22 then simply says High.

 

[Lucyr]

Thank you for your response Lucyr. I am newly diagnosed T1 after 5 years misdiagnosed as T2. I'm using DexcomOne which is not always accurate. FPs have taken me up to 32.5 a few times while T2 so with the DexcomOne readings still showing off the scale even though I'm now on a basal bolus of Tresiba and Novo Rapid which is trial and error ATM it worries me that the receiver only shows up to 22 then simply says High.

If my sensor said over about 13-15 I would be fingerpricking to correct not using the sensor readings to correct anyway

 

[Tdm]

I'd say to focus on getting bs down rather than getting accurate figures on just how high they are. What do your medical team think of your numbers, have they told you how to get them down?

 

[Dillon]

I'd say to focus on getting bs down rather than getting accurate figures on just how high they are. What do your medical team think of your numbers, have they told you how to get them down?

Thank you, Tdm. Yes we are adjusting every week but they said it takes time to get the right level. But when it gets that high it's difficult to calculate how much insulin to give as it could be 1 point or 10 points over and they said it's better to underestimate than risk a hypo ...I'm sure we will get there and it's early days with insulin for me. FPs don't always help as it goes off the scale on those too.

 

[Spathiphyllum]

Yes we are adjusting every week but they said it takes time to get the right level.

Every *week*? With highs like that? And, as you said in your first post, above 22 for 50% of the time? ...

I mean, from the day I was diagnosed, my DSNs rang me every weekday for a couple of weeks, and we were adjusting basal (Tresiba) every day or two for the first ten days ... And then they rang me a couple of times a week for the next two weeks, to work on bolus, and they gave me a number to ring them at other times if needed ...

I'm worried that having such very high BG so often is really not safe. You say you were told "it's better to underestimate than to risk a hypo"-- but hypos are easily corrected! And you have a CGM, with a low-glucose alert! And what about the risk of DKA? Are you testing for ketones? ...

I think you should lean on your diabetes team-- in the nicest possible way, of course!-- to give you more help more frequently, until your extreme highs are under control.

And, on a different subject-- sorry to hear of your misdiagnosis, but not surprised-- nearly happened to me! Anyway, I hope you get the help you need; wishing you all the best.

 

[silentsquirrel]

Thank you, Tdm. Yes we are adjusting every week but they said it takes time to get the right level. But when it gets that high it's difficult to calculate how much insulin to give as it could be 1 point or 10 points over and they said it's better to underestimate than risk a hypo ...I'm sure we will get there and it's early days with insulin for me. FPs don't always help as it goes off the scale on those too.

Off the scale on a finger prick meter is over 33 on most meters, which is really dangerous. Do you test for ketones? If you cannot get hold of your team you need to head for A & E if a blood glucose meter is saying HI (ie >33) more than very briefly.

 

[Dillon]

Every *week*? With highs like that? And, as you said in your first post, above 22 for 50% of the time? ...

I mean, from the day I was diagnosed, my DSNs rang me every weekday for a couple of weeks, and we were adjusting basal (Tresiba) every day or two for the first ten days ... And then they rang me a couple of times a week for the next two weeks, to work on bolus, and they gave me a number to ring them at other times if needed ...

I'm worried that having such very high BG so often is really not safe. You say you were told "it's better to underestimate than to risk a hypo"-- but hypos are easily corrected! And you have a CGM, with a low-glucose alert! And what about the risk of DKA? Are you testing for ketones? ...

I think you should lean on your diabetes team-- in the nicest possible way, of course!-- to give you more help more frequently, until your extreme highs are under control.

And, on a different subject-- sorry to hear of your misdiagnosis, but not surprised-- nearly happened to me! Anyway, I hope you get the help you need; wishing you all the best.

Thank you Silent Squirrel, and really you have opened my eyes...I do check for ketones and so far so good.
The nurses don't seem to react to my highs with much urgency so I have assumed it's not that bad...it does come down eventually but I would estimate it takes 3 of the 4 hours to see any change. They have told me not to panic and overdose but to hold my nerve but as I'm learning to count carbs and adjust my own doses I'm not there yet and do get it wrong. Thanks very much and hope you are managing well and feeling ok. Best wishes

 

[Dillon]

Thank you Spathyphyllum
The referred me to the diabetic dietician who is helping me to count carbs. She is on holiday this week and I haven't seen the nurse for about a month.

 

[everydayupsanddowns]

Sorry to hear you are having such a difficult time with your diabetes management

It does seem rather long to leave you between adjustments. It can be kinder on the body to bring very high levels down relatively gradually, but I think this is generally over a week or two, not a month or two?

Are you being seen at a hospital clinic?

How do your current doses compare to this slide which I saw in a conference presentation for diabetes healthcare professionals



It’s not advice for you, but may help you to gauge whether your current doses are relatively ‘average’ starting points for people, or may still be quite conservative.

It is not uncommon to start people on lowish doses and ‘titrate’ them upwards, but I can’t help but feel you might have expected things to be moving a little quicker.

Perhaps give NHS 111 a call?

Do you have a way of checking for ketones? You may be at risk of ketoacidosis at the levels you describe

 

[Dillon]

Hi everydayupsand downs
Many thanks for your comments.
I think you could be right that they have started me on a relatively low conservative dose.
My basal is Tresiba and I have 12 units per day. Plus the bolus. Previously for 3 months I was having 12 units of levemir only.

Since the switch to T1 with insulin from T2 tablets, I have been on a rollercoaster. Have put on weight having lost it rapidly. I do check for ketones and so far am ok. I last saw the nurse about a month ago, since she referred me to the dietician to help with counting carbs but she has been on holiday for a couple of weeks. My fp this afternoon (1st May) is currently 12.6. But have 3 hours left for the insulin to bring it down.
The very high readings are not constant but do happen a few times per week. I think this is probably bcos I'm not getting my doses right .still learning. Like you I'm up and down it's different every day.

Best wishes

 

[Tdm]

Hypos aren't that bad. Most can be avoided with some sweetys. Set you alarms...oh, 5? 6, 7 even. Will give you time to respond and as you get more used to it you can lower it
Pretty much all t1 bs control comes down to either giving more insulin, or eating.
You are able to do both!

Plus, walking. Walking for 10 plus mins with bolus on board brings your sugars down just dandy!

Taking you levels generally lower is a good idea. Aiming for the 4s is not sensible right now, but under 10 is very doable.
And taking ownership of your treatment an even better one, especially since your team don't seem to be there for you, and even the best diabetes team in the world won't be there outside working hours.

 

[Dillon]

Thank you Tdm
Taking ownership is the key I think you are right. Not sure what I should expect from the Diabetes Team tbh. Down to me really. I had a bad hypo while walking my dogs, could see it was coming so msgd my husband. Just got the dogs back into the car and had to let it happen. He got to me with chocolate and fizzy drink just as I was losing awareness. That was my first one, Subsequent hypos I have been more prepared for.