Freestyle Libre - LO result all day, despite lots of sugar

[Normandie19]

Hello everyone

Posting first post on behalf of my 76 year old Mum who is having trouble controlling hypoglaecemia

She has a rare condition Noninsulinoma pancreatogenous hypoglycemia syndrome (NIPHS), a rare condition of acquired hyperinsulinism due to pancreatic beta cell hyperplasia.

She now has persistent hypoglycemia. She experiences all the symptoms of diabetes but is not classed as actually having it. We believe the reason she got this, was because about 20 years ago she had Roux-en-Y surgery. There are believed to be around 30,000 people living with this condition in the USA due to weight-loss surgery. It is one of the unknown side-effects of this operation.

Anyway, now the medical bit is over, she got a Freestyle Libre self-funded and we finally got it working.

She got these read-outs for 14 Jan, 15, Jan and 16 Jan. The line goes steadily lower and lower and lower until today she's getting read-outs and measurements under 3.0 all day and lots of LO. She's had lots of sugar to try and regulate things - but it's made no difference.

She's found that she's not having her usual hypo symptoms she usually would get and the readings don't match her physical symptoms. Is there something wrong with the monitor? 14 Jan she was within 4-9, then 15 Jan she went to 6 to 3 and then today it's been below 3 all day and lower.

Would anyone know what is going on? Should we ask for a new sensor? Is this one faulty? Thank you for any help. She got up at 4am and had 4 jelly babies and a bowl of porridge because the reading said LO, only to feel no different and see no change in the line....

We've gone from feeling terrified to now feeling like it's not her, it's the monitor :/ We had quite high hopes so not sure what to think now. Desperate to get ontop of this condition as she has a number of lows throughout the day - and learn to try and control them - but this isn't helping.

 

[Northerner]

Hi Normandie19, welcome to the forum 🙂

Have you verified the Libre scan readings by doing fingerprick tests? Sometimes the Libre sensor doesn't insert properly causing it to read well below the actual blood sugar levels. If it is a faulty sensor then you can feed her as much as you want and it is likely to still stay low as it isn't reading the body fluid (interstitial fluid) properly. If it's faulty call Abbott and they will replace the sensor free of charge 🙂

 

[everydayupsanddowns]

Sorry to hear about the problems your Mum is having @Normandie19

Is her hypoglycaemia symptomatic? Does she get warning signs when her BG is below the normal range? Common symptoms include:

• trembling and feeling shaky
• sweating
• being anxious or irritable
• going pale
• palpitations and a fast pulse
• lips feeling tingly
• blurred sight
• being hungry
• feeling tearful
• tiredness
• having a headache
• lack of concentration.

As Northie suggests, continuous monitors usually work very effectively, but there are times when sensors or systems can provide results outside the usual expected parameters.

It might be helpful to get a few strips to cross-check. If you use Freestyle strips that fit the handset, Abbott may be more likely to replace any sensors that are misbehaving!