Freestyle libre

[abcd99]

Hi again friends..........as you already know my 26 year old son is diabetic type 1 since November 2017. He is managing well. His latest blood report is also ok, but unfortunately that does not mean he can stop taking insulin. My son is now using freestyle libre sensor since last few months. As he does not like parents interference in his personal matters, I sometimes quietly sneak into his room and check this sensor.........and for last few days I see that his reading are 44, 53, 64 76 (mg/dl). This is so low, but he feels ok, he does not rush to eat, he goes for bath......is this possible. Is it that when freestyle libre is showing 44 mg/dl, it is actually some other reading........I am very much confused .I could not ask my son as he gets upset with my questions.......so please help me to understand this .........thanks a lot.

 

[River83]

Hi again friends..........as you already know my 26 year old son is diabetic type 1 since November 2017. He is managing well. His latest blood report is also ok, but unfortunately that does not mean he can stop taking insulin. My son is now using freestyle libre sensor since last few months. As he does not like parents interference in his personal matters, I sometimes quietly sneak into his room and check this sensor.........and for last few days I see that his reading are 44, 53, 64 76 (mg/dl). This is so low, but he feels ok, he does not rush to eat, he goes for bath......is this possible. Is it that when freestyle libre is showing 44 mg/dl, it is actually some other reading........I am very much confused .I could not ask my son as he gets upset with my questions.......so please help me to understand this .........thanks a lot.

The Libre doesn’t always correlate exactly with a finger test, however your son should be doing a blood test if the Libre indicates that his BG is low. It seems unlikely that his BG is within range if his sensor is reading 44mg/dl, however he really needs to check. Abbot will replace sensors if they are not within a certain percent of a BG test.

 

[abcd99]

The Libre doesn’t always correlate exactly with a finger test, however your son should be doing a blood test if the Libre indicates that his BG is low. It seems unlikely that his BG is within range if his sensor is reading 44mg/dl, however he really needs to check. Abbot will replace sensors if they are not within a certain percent of a BG test.

Yes River 83 , we so much wanted to tell him the same, but then he will know that I was in his room....this is real big problem......why children want to hide things from parents when all that parents want is to help their children. I hope is regular doctor will see his readings and take right steps.......may be it is low because his pancreas are healing.....(I wish).....there is so much that I want to know, but he does not speak.......feel so helpless........thanks for your reply.

 

[Bluey1]

The advantage of the Libre is that gives you a trend. You need to compare this to finger prick test, however the Libre lags by at least 20min and then expect the 2 not to match. There could something even worse at play and that is loss of hypo awareness. The only real way to determine what his BGL is by a finger prick test. Some people are not Hypo aware while others are, most that are not initially were, so I think it would it unlikely your son is hypo unaware so soon after being diagnosed.

 

[Deleted Account]

may be it is low because his pancreas are healing

Unlike type 2, it is not possible for a type 1 pancreas to go in remission. There are a few reasons for the Libre to report low:
- during the first few months of type 1, the honeymoon period is unpredictable and the pancreas is likely to produce some insulin. This is because there are still some insulin producing cells. Unfortunately, as an autoimmune disease, these will eventually die. However, I recently read an article which suggests exercise may extend the honeymoon period.
- some people have reported also low readings on the Libre during sleep. This is due to pressure applied to the sensor when you lie on it.
- the Libre is not always accurate and it may be faulty.
- the Libre may be correct and the insulin dose may be too high. There are multiple reason s for this including, incorrect carb counting exercise, alcohol, ...

The only way to know what is really happening is with s finger prick. This will not be recorded on the Libre reader.

 

[abcd99]

Unlike type 2, it is not possible for a type 1 pancreas to go in remission. There are a few reasons for the Libre to report low:
- during the first few months of type 1, the honeymoon period is unpredictable and the pancreas is likely to produce some insulin. This is because there are still some insulin producing cells. Unfortunately, as an autoimmune disease, these will eventually die. However, I recently read an article which suggests exercise may extend the honeymoon period.
- some people have reported also low readings on the Libre during sleep. This is due to pressure applied to the sensor when you lie on it.
- the Libre is not always accurate and it may be faulty.
- the Libre may be correct and the insulin dose may be too high. There are multiple reason s for this including, incorrect carb counting exercise, alcohol, ...

The only way to know what is really happening is with s finger prick. This will not be recorded on the Libre reader.

Thank you so much Helensaramay for your important reply which gives so much information. I want to ask that why should pancreas stop making insulin if person is now eating healthy food. Why autoimmune cannot see the change......... About finger prick.......I have seen reading on freestyle libre which has red drop of blood symbol, which is reading of pricked finger........yes this reading is usually more than 70. while surfing on youtube, I did find two people who were type 1 but their pancreas started to work........I will keep praying and hoping for all. Miracles do happen sometimes.........

 

[abcd99]

The advantage of the Libre is that gives you a trend. You need to compare this to finger prick test, however the Libre lags by at least 20min and then expect the 2 not to match. There could something even worse at play and that is loss of hypo awareness. The only real way to determine what his BGL is by a finger prick test. Some people are not Hypo aware while others are, most that are not initially were, so I think it would it unlikely your son is hypo unaware so soon after being diagnosed.

Thank you for your reply Chowie, but please can you tell me in more detail, what is "loss of hypo awareness"?. Yes finger prick test is right and I have found lots of strips on his table which means he knows everything and is pricking his finger several times......(this whole thing is real punishment for both the patient and the parents)

 

[Deleted Account]

I don't believe it is fully understood why, with type 1, the bidy decides all insulin producing cells are bad but it will continue yo destroy them. If new indulin producing cells are crested, the body destroys the. If insulin producing cells are transplanted, the body destroys them.
Research has uncovered some ways to extend the honeymoon period but ultimately, those cells will be destroyed.
Miracles are very rare. But people living normal lives with type 1 are less rare.
I look to athletes with type 1 (such as the NovoNordisk cycling team), actors (such as Halle Berry), musicians (such as EstecHain) and even politicians *such as Theresa May) for my inspiration to live my life to the full with type 1 diabetes.
I do not look at the two unsubstantiated people on YouTube who say them have reversed it.

 

[abcd99]

I don't believe it is fully understood why, with type 1, the bidy decides all insulin producing cells are bad but it will continue yo destroy them. If new indulin producing cells are crested, the body destroys the. If insulin producing cells are transplanted, the body destroys them.
Research has uncovered some ways to extend the honeymoon period but ultimately, those cells will be destroyed.
Miracles are very rare. But people living normal lives with type 1 are less rare.
I look to athletes with type 1 (such as the NovoNordisk cycling team), actors (such as Halle Berry), musicians (such as EstecHain) and even politicians *such as Theresa May) for my inspiration to live my life to the full with type 1 diabetes.
I do not look at the two unsubstantiated people on YouTube who say them have reversed it.

You are 100% right Helen, but as a mother, I go to each and every corner where a small light of hope is blinking, though I know the light is just my imagination.......hope my son will also live his life to the fullest , happy and healthy.........thanks.

 

[Rokaab]

One thing I've noticed (at least for myself) is that at when my Libre says LO it can be very inaccurate - if it says Lo it can be anywhere between 2.4 and 5.5 mmol/L (43-99 mg/dl), so if it tells me between LO and about 5 (90mg/dl) I need to do an actual blood test as the Libre is not exactly trustworthy at that point.

 

[abcd99]

One thing I've noticed (at least for myself) is that at when my Libre says LO it can be very inaccurate - if it says Lo it can be anywhere between 2.4 and 5.5 mmol/L (43-99 mg/dl), so if it tells me between LO and about 5 (90mg/dl) I need to do an actual blood test as the Libre is not exactly trustworthy at that point.

Thank you Rokaab, for your reply. I was thinking that if libre is so inaccurate, then why to buy it.....they should try to improve this sensor.......I see rokaab that you were diagnosed as type 1 from the age of 2.......wow.......long journey.......how are you feeling......what is your main diet.........how was life so far........would you like to share..........thanks

 

[Celsus]

Hi again friends..........as you already know my 26 year old son is diabetic type 1 since November 2017. He is managing well. His latest blood report is also ok, but unfortunately that does not mean he can stop taking insulin. My son is now using freestyle libre sensor since last few months. As he does not like parents interference in his personal matters, I sometimes quietly sneak into his room and check this sensor.........and for last few days I see that his reading are 44, 53, 64 76 (mg/dl). This is so low, but he feels ok, he does not rush to eat, he goes for bath......is this possible. Is it that when freestyle libre is showing 44 mg/dl, it is actually some other reading........I am very much confused .I could not ask my son as he gets upset with my questions.......so please help me to understand this .........thanks a lot.

Please don't get me wrong @abcd99 , but your son is 26 years old. So a grownup that should be respected as such and also a person with a disability he needs to take care of himself. Sneaking in to check his sensor without his consent is not helping to have a trusted relationship. Just saying. Fairly newly diagnosed young need to have some space and time to get to terms with this disease on their own terms. Don't be too pushy or insisting non-stop. Let him determine the moment he feels ready to share some of his experiences with you in confidence and potentially also giving you a copy of his Libre Reader reports, as its better to get these for an informed discussion/review than nailing him down on a few single point observations that may or may not be within 'acceptable bg range'.

Sleeping with and waking up with a bg around 64-76 mg/dl is not alarming, as long as he is not engaging in rapid exercise right away. For the values you mention below that range I would personally just take glass of juice or something else with quick working carbs in to get it up above 80 mg/dl, which is the considered minimum to be 'normal bg'.

Regarding his Type1, then that is a chronic disease that he will have now for the rest of his life, based on the medical technologies available today. Likewise he will need to take his insulin injections every day. Anybody saying on YouTube that he/her cured their Type1 diabetes is not correct. You have many crooks online taking money from naïve people they scam to believe that they can cure them or their children/relatives of diabetes 1.

You have of course the monumental surgical procedure to receive a pancreas transplant from a deceased donor, which then potentially could cure your diabetes. But such organ transplant is still today considered more risky to your health than living with diabetes type1 and also brings along with it other medications that needs to be taken for the rest of your life not to mention the risk factors such as diminished immune system functionality and organ rejection.

 

[abcd99]

Please don't get me wrong @abcd99 , but your son is 26 years old. So a grownup that should be respected as such and also a person with a disability he needs to take care of himself. Sneaking in to check his sensor without his consent is not helping to have a trusted relationship. Just saying. Fairly newly diagnosed young need to have some space and time to get to terms with this disease on their own terms. Don't be too pushy or insisting non-stop. Let him determine the moment he feels ready to share some of his experiences with you in confidence and potentially also giving you a copy of his Libre Reader reports, as its better to get these for an informed discussion/review than nailing him down on a few single point observations that may or may not be within 'acceptable bg range'.

Sleeping with and waking up with a bg around 64-76 mg/dl is not alarming, as long as he is not engaging in rapid exercise right away. For the values you mention below that range I would personally just take glass of juice or something else with quick working carbs in to get it up above 80 mg/dl, which is the considered minimum to be 'normal bg'.

Regarding his Type1, then that is a chronic disease that he will have now for the rest of his life, based on the medical technologies available today. Likewise he will need to take his insulin injections every day. Anybody saying on YouTube that he/her cured their Type1 diabetes is not correct. You have many crooks online taking money from naïve people they scam to believe that they can cure them or their children/relatives of diabetes 1.

You have of course the monumental surgical procedure to receive a pancreas transplant from a deceased donor, which then potentially could cure your diabetes. But such organ transplant is still today considered more risky to your health than living with diabetes type1 and also brings along with it other medications that needs to be taken for the rest of your life not to mention the risk factors such as diminished immune system functionality and organ rejection.

Thank you for your reply Celsus. I hope some day my son will share something with me. Till then I have support of this forum...at least here I can share my feelings and feel better. .Thanks for all the information. I am trying to understand things. Have a nice day.

 

[Scott-C]

That's good that your son is using libre, @abcd99 . Although it has a few quirks which take a while to get used to, it takes a lot of the uncertainty out of T1 just by being able to see levels moving in more or less real time, which lets us take small corrective steps before things get too out of range.

There's a couple of useful books on getting the most out of libre and cgm:

Sugar Surfing by Stephen Ponder

Beyond Fingersticks by William Lee Dubois

There's also a small transmitter costing £96 (you're in India if I remember correctly? So about 9000 rupees) from www.ambrosiasys.com. It goes on top of the sensor and sends readings every 5 minutes to an app called xDrip+ , so it can be set up to ring the phone if levels start getting too high or low. Pretty good for avoiding night hypos.

 

[Rokaab]

Thank you Rokaab, for your reply. I was thinking that if libre is so inaccurate, then why to buy it.....they should try to improve this sensor......

I know for some it's more accurate that for others, and I know also they do say that ate the low values and the high values it may not be accurate - this may be because its not measuring blood sugar it's measuring the interstitial fluid (or something like that). For me it means I can see what is happening, so I can see if its going up or down rather than just a single snapshot, and gives me a rough idea of where I am - its pretty accurate for me between 4.5 and about 14

I see rokaab that you were diagnosed as type 1 from the age of 2.......wow.......long journey.......how are you feeling......what is your main diet.........how was life so far........would you like to share..........thanks

Well, I'm still here - apparently initially the docs didn't think I'd make it to this age - but then there have been a lot of improvements over 40 years - there was no home blood testing or even plastic syringes when I started (let alone pens and pumps).
My main diet is very similar to a 'normal' diet except I have to avoid gluten (and I'm really picky) - so I still have carbs (bread (gluten-free), pasta, rice, spuds etc), and still have 'normal' (but gluten-free) food as some would put it (though I don't like anything that's too rich or sweet - but that's cos I wasn't allowed it as a kid)
My life with diabetes has had its ups and downs - I didn't take much care at uni and in my 20's - I always hated blood tests so never did as many as I should've been doing, but I'm still here with minimal problems.
I certainly wouldn't say life with diabetes is easy - in fact at times its been a complete PITA, but I'm mostly happy with how l'm doing, I've got a decent job, I have good friends (not many friends but the ones I do have are good), I have a small social life (I'm an introvert so I'm often happier spending time on my own rather than with others) - and the libre is a game-changer for me even if its not accurate all the time, means I can see what's going on.

 

[abcd99]

That's good that your son is using libre, @abcd99 . Although it has a few quirks which take a while to get used to, it takes a lot of the uncertainty out of T1 just by being able to see levels moving in more or less real time, which lets us take small corrective steps before things get too out of range.

There's a couple of useful books on getting the most out of libre and cgm:

Sugar Surfing by Stephen Ponder

Beyond Fingersticks by William Lee Dubois

There's also a small transmitter costing £96 (you're in India if I remember correctly? So about 9000 rupees) from www.ambrosiasys.com. It goes on top of the sensor and sends readings every 5 minutes to an app called xDrip+ , so it can be set up to ring the phone if levels start getting too high or low. Pretty good for avoiding night hypos.

Hi Scott, Thank you for your very useful reply.. I will surely look into the books that you have referred. Also information about the transmitter........I will tell my son about it......... Thanks to advance technology which is helping so much..........hope some day there will be some easy cure, without any complications that will overcome diabetes and we will create new world where children will not even know what was it to live with diabetes. Lets keep HOPE!!!

 

[Ethanw57]

Unlike type 2, it is not possible for a type 1 pancreas to go in remission. There are a few reasons for the Libre to report low:
- during the first few months of type 1, the honeymoon period is unpredictable and the pancreas is likely to produce some insulin. This is because there are still some insulin producing cells. Unfortunately, as an autoimmune disease, these will eventually die. However, I recently read an article which suggests exercise may extend the honeymoon period.
- some people have reported also low readings on the Libre during sleep. This is due to pressure applied to the sensor when you lie on it.
- the Libre is not always accurate and it may be faulty.
- the Libre may be correct and the insulin dose may be too high. There are multiple reason s for this including, incorrect carb counting exercise, alcohol, ...

The only way to know what is really happening is with s finger prick. This will not be recorded on the Libre reader.

I'm technically diagnosed as type 1 in remission. Not sure why they call it remission, but for now I do not take insulin (but of course I will in the future when the insulin cells are all gone). I spent a few months on insulin and changed my diet & exercise regime quite significantly until my endo told me stop taking insulin. You may find that someone who has increased physical activity (e.g sports season started since diagnosis) has a slightly different reaction to insulin during that time. I found while taking insulin, the libre would read much lower or higher than blood tests when I was running quite low or high, but a 5-6 reading was the same as blood. I like to think of the libre readings as a guide on when you need to take action, the blood tests revealing just what exactly you need to do.

 

[Ethanw57]

Unlike type 2, it is not possible for a type 1 pancreas to go in remission. There are a few reasons for the Libre to report low:
- during the first few months of type 1, the honeymoon period is unpredictable and the pancreas is likely to produce some insulin. This is because there are still some insulin producing cells. Unfortunately, as an autoimmune disease, these will eventually die. However, I recently read an article which suggests exercise may extend the honeymoon period.
- some people have reported also low readings on the Libre during sleep. This is due to pressure applied to the sensor when you lie on it.
- the Libre is not always accurate and it may be faulty.
- the Libre may be correct and the insulin dose may be too high. There are multiple reason s for this including, incorrect carb counting exercise, alcohol, ...

The only way to know what is really happening is with s finger prick. This will not be recorded on the Libre reader.

I'm technically diagnosed as type 1 in remission. Not sure why they call it remission, but for now I do not take insulin (but of course I will in the future when the insulin cells are all gone). I spent a few months on insulin and changed my diet & exercise regime quite significantly until my endo told me stop taking insulin. You may find that someone who has increased physical activity (e.g sports season started since diagnosis) has a slightly different reaction to insulin during that time. I found while taking insulin, the libre would read much lower or higher than blood tests when I was running quite low or high, but a 5-6 reading was the same as blood. I like to think of the libre readings as a guide on when you need to take action, the blood tests revealing just what exactly you need to do.

 

[Deleted Account]

I'm technically diagnosed as type 1 in remission. Not sure why they call it remission, but for now I do not take insulin (but of course I will in the future when the insulin cells are all gone). I spent a few months on insulin and changed my diet & exercise regime quite significantly until my endo told me stop taking insulin. You may find that someone who has increased physical activity (e.g sports season started since diagnosis) has a slightly different reaction to insulin during that time.

Are you nearly diagnosed?
If so, it suggests you are extending the honeymoon period with your diet and exercise regime. Although the "in remission" phrase is interesting.

 

[Ethanw57]

Are you nearly diagnosed?
If so, it suggests you are extending the honeymoon period with your diet and exercise regime. Although the "in remission" phrase is interesting.

I was diagnosed T1 nearly a year ago, I have the nasties that attack the insulin producing cells, and if I were to eat or drink lots of sugar I'd have hyperglycaemia. From what I understand, being type 1 and not requiring insulin is what counts as being "in remission" (I questioned the phrase to the diabetic nurse when she mentioned that she read that off of my medical record, and she told me that's what it meant), honeymoon period or not