Lows without insulin

[Mark Johnson]

Hi All ,

Just wondering if anyone out there is in a similar place to my 10 year old daughter.

She has a Autoimmune Hepatitus and the steroid medication for her Liver has caused her to be a Diabetic T1 or she could of been a T1 previously before the tests shown , But this is still not 100% we have to sit it out.

The problem is she was very high due to the steroid medication a few months ago and had to take insulin to lower this and now that the medication is only 1 tablet of steroids and a few other liver meds she was having lots of lows below 4 and since Christmas she has had No insulin.

However she is still having lows , Specially when she exercise's at school and her out of school activities and early mornings , She goes to bed before 9pm and gets up at 7am but she is dropping each day from around 5am.

She eats really well and we are trying to manage this , We possibly can't give her any more food. Typical supper is Weetabix , Glass Milk & long lasting low GI bread toasted.

just thought someone out there may have gone through this themselves or know someone that is , We are fully aware of the honeymoon period.

Many thanks in advance Mark.

 

[everydayupsanddowns]

Sorry to hear about the difficulties your daughter is having with managing steroids.

I think @Pumper_Sue has years of experience of steroids and insulin because of Addisons?

It does sound unusual for the hypos to be continuing despite no insulin for a month. Are the lows happening overnight?

 

[Inka]

I wonder if her body has got used to having to bring down high sugars from the steroids and is still slightly overproducing insulin, causing lows? How low does she go and do you verify the low with a fingerprick test?

 

[mitchsi]

Sorry to hear about your daughter
The only thing that comes to mind ref 5am lows is to perhaps add some good fats to the supper to delay carb digestion, not sure if that’s an option for her?

 

[Mark Johnson]

Thanks Very much for you reply's , the lows tend to happen early hours say from around 5am when she has little food , which gives what she needs , We do give her a great supper to help with the carb digestion , We are thinking that she is still over producing the insulin but she does take quite a long time for her food to kick in after a meal it could be up to a hour even longer so we do see her going lower before the her food starts to diges.

She has a dexcom G7 which we find is very good , But only a few weeks using this new monitor.

We had a incident this monday when she had her tea , Went to guides then we had to bring her home as she was exercising with the other guides running laps round the sports hall and her food didn't kick in and she went very low. From now on she will have her tea even earlier before guides so that the tea can get into her system , and give her some sugar related snacks while she is there. This is definitely a learning curve and So much to learn.

Thanks So much for your help , We will continue try different things and foods.

 

[Inka]

The G7 is brilliant @Mark Johnson Do make sure you have the Low alarms set at a high enough level to catch drops before they become a problem. I’d also give her a sugary snack before activity, maybe followed by a small amount of longer-acting carbs.

If she’s regularly going low at the same time each night, it might be worth setting an alarm for say 2am and giving her a snack then. It’s what I did when I was pregnant and was going low (despite my pump) and I found it worked well.

 

[Mark Johnson]

Thanks Inca , Yes we have the alarms set so we can catch the Lows , Definitely going to give her the snacks before her activity's , We don't really want to wake her but if this helps we will as she has missed so much time of school over the the last 4 months , But her liver enzmes are normal which is fantastic , We just need to manage and get on top of the diabetes' , Thank Very much Mark.

 

[Inka]

Great news about her liver enzymes @Mark Johnson Long may that continue.

 

[Mark Johnson]

Many thanks Inka.

 

[Proud to be erratic]

Thanks Inca , Yes we have the alarms set so we can catch the Lows , Definitely going to give her the snacks before her activity's , We don't really want to wake her but if this helps we will as she has missed so much time of school over the the last 4 months , But her liver enzmes are normal which is fantastic , We just need to manage and get on top of the diabetes' , Thank Very much Mark.

Could I ask what you have the low alert set at? I have G7, which works extremely well for me. I have no pancreas and my D is considered to be brittle, vulnerable to very rapid drops unexpectedly. I found the Libre 2 low alert was seriously constraining with an upper low level of 5.6; now because G7 allows this to be as high as 8.3, I routinely keep my low alert in the 6s and on "edgy" days I move it close to or at 7.0. Thus the alert is a true alert and much less of an alarm.

With no understanding of child physiology I have no idea if there are constraints or parameters that you should be aspiring to achieve for your daughter's BG. But from this distance it seems to me that anything you can do to keep your daughter away from 4.0 is more than good. For adults the TIR parameters consider that up to 25% above 10 is OK whereas time below 4 would be best if not greater than 5%. These Guidelines have, I think, been carefully (and gently) phrased so that they are guidance; and for people who despite due diligence can't achieve the range they shouldn't be left feeling criticised, or shamed in some way.

A slight aside I don't understand why Dexcom make such a big thing of the Urgent Low Alarm at t heir fixed setting of 3.1, rather than say 3.5. [Incidentally, a true hypo level is 3.5 for adults; so 4.0 already provides some buffer space. But I'm not suggesting that 3.5 could be a better norm!!]

One difficulty that I find is the whole business of how accurate are my Accuchek meter or my G7? This only matters to me when very low. But when I'm really close to hypo I get conflicting data from my G7 with respect to my Accuchek cassette fp readings AND I don't get a consistent numerical point from either when I'm actually feeling hypo. (Yes I know that CGM should be checked against fp, but I do find G7 very consistent and close to fp). If that quandary is challenging for me as an adult, it must be even more challenging for you as parents to a 10 yr old to decide what is accurate / true; but I guess a low is a low and treat first is the immediate response then analyse and evaluate. Sorry, I'm thinking out loud!

 

[Satan’s little helper]

Hi All ,

Just wondering if anyone out there is in a similar place to my 10 year old daughter.

She has a Autoimmune Hepatitus and the steroid medication for her Liver has caused her to be a Diabetic T1 or she could of been a T1 previously before the tests shown , But this is still not 100% we have to sit it out.

The problem is she was very high due to the steroid medication a few months ago and had to take insulin to lower this and now that the medication is only 1 tablet of steroids and a few other liver meds she was having lots of lows below 4 and since Christmas she has had No insulin.

However she is still having lows , Specially when she exercise's at school and her out of school activities and early mornings , She goes to bed before 9pm and gets up at 7am but she is dropping each day from around 5am.

She eats really well and we are trying to manage this , We possibly can't give her any more food. Typical supper is Weetabix , Glass Milk & long lasting low GI bread toasted.

just thought someone out there may have gone through this themselves or know someone that is , We are fully aware of the honeymoon period.

Many thanks in advance Mark.

Hello, are these low episodes back up checked with a blood test monitor?

 

[Mark Johnson]

Hi ,

Any lows under 4 are checked with a finger prick , We set the dexcom at 4.3 but again sometimes early mornings when we are watching it and it going down lower say to 4.5 then when the G7 reads again it jumps to say 4.9 and then rises , For which my understanding is the Pancreas is kicking out more insulin.


The G7 reading is quite close to the finger prick readings , We have had the issues with the accuchek reader not being anywhere near the Libre so we changed to the G7. But we were told that different make of GM don't suit everyone.

We will continue trying different foods for supper and hopefully get there , Thanks for all your Help.

Mark

 

[Proud to be erratic]

Hi ,

Any lows under 4 are checked with a finger prick , We set the dexcom at 4.3

So I personally think you are striving to be far too close to the hypo zone. Partly because 4.3 is assuming an accuracy that does not exist in any fp meter or CGM and partly because even if it is that accurate (which would be chance) there is far too little buffer or slack when quite modest change of BG occurs.

but again sometimes early mornings when we are watching it and it going down lower say to 4.5 then when the G7 reads again it jumps to say 4.9 and then rises , For which my understanding is the Pancreas is kicking out more insulin.

If it's rising that means there is a little less insulin available - not more. More significantly in adults many of us experience the Dawn Phenomena (DP) whereby our bodies release a surge of glucose to set us up for the coming day. People without D are blissfully not aware this is going on; those of us with insulin shortage or some folks with high insulin resistance see the DP surge on our CGMs. It doesn't happen like clockwork and some experience more than others. Sometimes a little later and colloquially describes as Foot On the Floor Syndrome (FOTF). DP or FOTF are yet one more bit of the "Confusing, Complicated and Contradictory nature of Diabetes". [Gary Scheiner, 'Think Like a Pancreas']

It would be quite normal to have a gentle wavy CGM line during the small hours of the night. If the net trend was downwards then her basal is too strong and if the trend upwards then her basal is a little insufficient. However some glycaemic variation during the night is very normal. One's brain is at its busiest doing its "housekeeping" in the small hours and 10 yr olds can get frantically busy during their waking hours, collapse into a first deep sleep then once partly recovered come to a shallower sleep with lots of mental activity along with some turbulence while sleeping. We are house sharing for several months with our daughter and our 10 yr old grandson and we see this first hand every day and hear him partly waking around 1am from our next door bedroom.

The G7 reading is quite close to the finger prick readings , We have had the issues with the accuchek reader not being anywhere near the Libre so we changed to the G7. But we were told that different make of GM don't suit everyone.

That has been my experience. My body and Libre were poor colleagues; Dexcom One was a little better, but still wayward. G7 has been for me both a revelation that such repeatable accuracy could exist and a significant stress reducer. I can not fully quantify how helpful G7 has been in reducing my daily commitments to finger pricking for every insulin decision.

We will continue trying different foods for supper and hopefully get there ,

Yep, trial and learning is the main game. But, as parents you owe it to yourselves and your daughter to also protect yourselves where you can. And I reiterate my personal opinion that you should stop using the G7 threshold as an alarm at 4.3 but set it higher and use it as an Alert. Take some pressure off yourselves.

Thanks for all your Help.

Mark

 

[Mark Johnson]

Thanks for your reply , We are fully aware of the G7 alarm and if we set it higher say 4.7 she may be 5.5 on a finger prick.
As we always FP if the alarm goes off showing a low say at 4.3 , As we don't want to wake her up if not needed and give her a Glucose shot , Which has happened in the past specially with the Libre. she has missed a lot of time of school and we want as much sleep for her as she can have .

Its very hard to get the balance right , But i fully understand your advice.

Thanks again for your advice. Mark.

 

[Pumper_Sue]

Thanks for your reply , We are fully aware of the G7 alarm and if we set it higher say 4.7 she may be 5.5 on a finger prick.
As we always FP if the alarm goes off showing a low say at 4.3 , As we don't want to wake her up if not needed and give her a Glucose shot , Which has happened in the past specially with the Libre. she has missed a lot of time of school and we want as much sleep for her as she can have .

Its very hard to get the balance right , But i fully understand your advice.

Thanks again for your advice. Mark.

Hi you do need to heed the advice, please set the alarm for 5 it does save a lot of lows 🙂
Is your daughter very tired as in exhausted all the time and wanting to sleep a lot?
If she is then look down the secondary Addison's disease route.
Addison's can be autoimmune or secondary caused by long term steroids.
If your daughter doesn't have enough steroid cover she will hypo for England.

 

[Mark Johnson]

Hi Sue , No my daughter is not tired or exhausted , She is very active.
She was on 8 tablets of steroids when her liver enzymes were over 1000 in september now she is Normal due to the steroids working and only has 1 steroid a day , she takes other meds and will do for the continued future.

I fully understand the need to set the alarm higher say 5 , But when the alarms goes off at 5 are you saying watch it and see if it goes alot lower then wake her and give her a Glucose shot , As on a good few occasions we have woke her done a finger prick test and she is not low say around 5.5 , When the monitor is showing lower than 4 , which in early hours is most people will be lower. We have had issued when she has gone low when she was having too much insulin and gave her sugar drinks , Carbs to get her through the night and then the problem started when she couldnt take her meds in the morning as she was feeling sick due to what we think is all the sugar stuff we needed to get her up.

Its Very hard but we will take your advice. Thank alot Mark.