Libre 2 need advice.

[mrscjoslin]

Hi there,
Please bare with me I'm new here, a popular search engine has bought me here after seeing if I'm entitled to NHS funding for a cgm sensor.

Let me explain a few things,

I am a type 2 diabetic I have been for 13 years now, didn't really bother me I didn't understand it under I moved doctors 3 years ago and was called in for a review. Never knew these existed. On my first one I was told my levels were high and was put on Metformin ( no other advice given).

Called back a year later they had raised again was told they would review me again in a year as it wasn't a major change. Then this year I had my review. Went to see my diabetic nurse. She said my levels were very high and she should be putting me on insulin but she didn't want too as I was due to fly out on honeymoon 4 days later for a week, ( 17th October) so she gave me my very first blood sugar reader, told me to finger pricks twice a week and put me on another new medication and sent me on my way and wanted a review in 3 months.

Let me add here I am also epileptic.

I flew out on honeymoon on the 17th October for a 7 day cruise around the med, was having an amazing time! We got to Valencia on 23rd October day before we was due to come home, we was doing an excursion Segway tour, we was getting ready, next thing I knew I had paramedics and my husband around me and I was being taken to hospital. My blood sugar levels was 33. I had a hypo and lead me to having an epileptic sezuire. The hospital care was rubbish I wasn't allowed to drink any water to help bring these levels down, they put me on a drip that wasn't even working nothing left the bottle in the 4 hours I was attached to it.

I left the hospital got back to the cruise ship packed up we was due to fly home the following day, I rung my diabetic nurse asap. Told her what had happened demanded I was put on insulin straight away, she agreed prescribed me it and then made an appointment for the following day for me to go and see her. She started me off on 10 units, along with the new medication and Metformin. I've been doing my blood sugar levels and I'm still concerned they are ranging from 11 to 15 and don't seem to be budging. I explained this when she rung today, she said if nothing changes after a week increase insulin by 2 units, then I'd have to wait as she's now on holiday until end of November.

I spoke to her about getting a cgm and she said I'm not entitled to one, the NHS doesn't like giving them out to adults they only give them out to type ones and children.

I inject insulin twice a day my sugar levels are high and I'm very concerned about this. I have gone and bought a libre 2 self funded I'm on day 2 of using it, I'm finding the readings very accurate. It's peace of mind as my husband can see my levels too, for instant today they went up to 22 he messaged me right away and told me to drink lots of water and test my blood straight away to make sure the reading was right. He also told me to lay down just incase a sezuire was to come. Libre was right my levels were 22 ( well 21.8).

I hadn't set the alarm on the app ( I've done it now)

Thing is I didn't even feel it when I had the hypo last time and I'm so scared I'm not going to feel it, so I'm so glad my husband can see it and help me raise the alarm.

I feel so let down by my nurse at the doctors as it is, but is she right, will I have to continue to self fund? According to this website if I'm type 2 and Inject twice a day and struggle to monitor sugar levels I should be able to get one, my epilepsy is effected with my diabetes too.

It's so hard

I'm still trying to work out diabetes it's so hard to understand what I can eat what I can't what I need to cut out.

Thank you for reading this long winded post.

 

[Bruce Stephens]

I feel so let down by my nurse at the doctors as it is, but is she right, will I have to continue to self fund? According to this website if I'm type 2 and Inject twice a day and struggle to monitor sugar levels I should be able to get one, my epilepsy is effected with my diabetes too.

You can read the NICE guidance here: https://www.nice.org.uk/guidance/ng28/chapter/Recommendations#continuous-glucose-monitoring

You satisfy the basic requirement of injecting insulin more than once a day, and it sounds to me like you should qualify because of your hypos. However, NG28 is just guidance and it's not guaranteed that your region will have arranged funding for this. Worth trying to push it a bit, I think: it does sound like Libre 2 would improve your life a lot, and I'd hope your nurse (and your GP) would be willing to try and help a bit more (for example by requesting funding for this for you, or just prescribing the things). (I'm assuming you're in England, where Libre 2 and Dexcom One are on the list of things that GPs can prescribe. I don't know the situation in other countries in the UK.)

 

[Robin]

Let me add here I am also epileptic.

The people with Type 2 I've encountered on here who have managed to get it prescribed all seem to have had to push for it, and make out their case. You probably need to make a list of reasons why the Libre would help you, and read it out to your nurse (also pointing out the NICE guidelines). If you’re prepared to play the epilepsy card, the fact that the Libre allows a third party to keep an eye on your levels to help keep you safe, or just the fact that you are juggling more than one condition, might tip the balance in your favour.

 

[Satan’s little helper]

Hi there,
Please bare with me I'm new here, a popular search engine has bought me here after seeing if I'm entitled to NHS funding for a cgm sensor.

Let me explain a few things,

I am a type 2 diabetic I have been for 13 years now, didn't really bother me I didn't understand it under I moved doctors 3 years ago and was called in for a review. Never knew these existed. On my first one I was told my levels were high and was put on Metformin ( no other advice given).

Called back a year later they had raised again was told they would review me again in a year as it wasn't a major change. Then this year I had my review. Went to see my diabetic nurse. She said my levels were very high and she should be putting me on insulin but she didn't want too as I was due to fly out on honeymoon 4 days later for a week, ( 17th October) so she gave me my very first blood sugar reader, told me to finger pricks twice a week and put me on another new medication and sent me on my way and wanted a review in 3 months.

Let me add here I am also epileptic.

I flew out on honeymoon on the 17th October for a 7 day cruise around the med, was having an amazing time! We got to Valencia on 23rd October day before we was due to come home, we was doing an excursion Segway tour, we was getting ready, next thing I knew I had paramedics and my husband around me and I was being taken to hospital. My blood sugar levels was 33. I had a hypo and lead me to having an epileptic sezuire. The hospital care was rubbish I wasn't allowed to drink any water to help bring these levels down, they put me on a drip that wasn't even working nothing left the bottle in the 4 hours I was attached to it.

I left the hospital got back to the cruise ship packed up we was due to fly home the following day, I rung my diabetic nurse asap. Told her what had happened demanded I was put on insulin straight away, she agreed prescribed me it and then made an appointment for the following day for me to go and see her. She started me off on 10 units, along with the new medication and Metformin. I've been doing my blood sugar levels and I'm still concerned they are ranging from 11 to 15 and don't seem to be budging. I explained this when she rung today, she said if nothing changes after a week increase insulin by 2 units, then I'd have to wait as she's now on holiday until end of November.

I spoke to her about getting a cgm and she said I'm not entitled to one, the NHS doesn't like giving them out to adults they only give them out to type ones and children.

I inject insulin twice a day my sugar levels are high and I'm very concerned about this. I have gone and bought a libre 2 self funded I'm on day 2 of using it, I'm finding the readings very accurate. It's peace of mind as my husband can see my levels too, for instant today they went up to 22 he messaged me right away and told me to drink lots of water and test my blood straight away to make sure the reading was right. He also told me to lay down just incase a sezuire was to come. Libre was right my levels were 22 ( well 21.8).

I hadn't set the alarm on the app ( I've done it now)

Thing is I didn't even feel it when I had the hypo last time and I'm so scared I'm not going to feel it, so I'm so glad my husband can see it and help me raise the alarm.

I feel so let down by my nurse at the doctors as it is, but is she right, will I have to continue to self fund? According to this website if I'm type 2 and Inject twice a day and struggle to monitor sugar levels I should be able to get one, my epilepsy is effected with my diabetes too.

It's so hard

I'm still trying to work out diabetes it's so hard to understand what I can eat what I can't what I need to cut out.

Thank you for reading this long winded post.

Hello, I’m sorry to read you were hospitalised on honeymoon.
With regards to getting prescribed sensors. If you are only seen by a DN at your GP’s surgery? It would be more favourable if you were referred to an endocrinologist at the hospital who could instruct the GP to add them to your prescription.

 

[helli]

I can't help with getting a Libre except to ask whether you have been tested for Type 1 diabetes if your levels continue to remain high.

I would also recommend that you check out the limitations of CGM thread - anything that high should be checked with a finger prick as CGMs are not designed to be accurate so high.

 

[rebrascora]

Hi and welcome.

So sorry to hear you have had such a scary incident whilst abroad, but pleased to hear you are now on insulin.

I wonder if you are getting confused between hypo and hyper. If your levels were at 33 then you were HYPER not HYPO which is very low blood glucose which would be under 4mmols and without insulin you would be unlikely to have a hypo, particularly if you have not adjusted your diet and being on holiday I imagine you were probably treating yourself food wise, which is perfectly understandable, so I would think that your BG levels were very high which 33 is, rather than low (hypo).

It is important to reduce your HbA1c slowly to allow your body to adjust to lower glucose levels gradually as sudden changes can be more detrimental, particularly to the eyes, than being mid range high for a few weeks or months longer, so try not to worry about being mid teens just now but follow your nurses advice about increasing the insulin by a couple of units every week until you get into single figures.

Can you tell us which insulin you are using?
Had you made any modifications to your diet over the years to manage your diabetes and if so, what?
Have you noticed any unexpected loss of weight recently?

 

[mrscjoslin]

Hi and welcome.

So sorry to hear you have had such a scary incident whilst abroad, but pleased to hear you are now on insulin.

I wonder if you are getting confused between hypo and hyper. If your levels were at 33 then you were HYPER not HYPO which is very low blood glucose which would be under 4mmols and without insulin you would be unlikely to have a hypo, particularly if you have not adjusted your diet and being on holiday I imagine you were probably treating yourself food wise, which is perfectly understandable, so I would think that your BG levels were very high which 33 is, rather than low (hypo).

It is important to reduce your HbA1c slowly to allow your body to adjust to lower glucose levels gradually as sudden changes can be more detrimental, particularly to the eyes, than being mid range high for a few weeks or months longer, so try not to worry about being mid teens just now but follow your nurses advice about increasing the insulin by a couple of units every week until you get into single figures.

Can you tell us which insulin you are using?
Had you made any modifications to your diet over the years to manage your diabetes and if so, what?
Have you noticed any unexpected loss of weight recently?

I didn't know anything about diabetes, I didn't know how serious it was, nothing was explained to me until before I went on honeymoon all I was told then was here's a glucose monitor you need to test twice a week and here's new meds too.

Even though I've been put on insulin nothing about diet has been mentioned no advice has been given to me. I've done things myself the last week like cut out as much sugar as I can, I've gone from having sugar in my tea to having sweetener, I've gone from drinking coke cola to drinking 2 liters of water a day or pepsi max as it's sugar free. I've cut back on chips and potato and cut back a lot on bread, like today me and the husband when out for lunch and we both ordered a burger which came with chips ( first time I've had them in 10 days) I ordered mine without the bun ( yes I got a funny look) I ate that first and literally only managed 2 chips, I'm finding my appetite isn't that great since being on insulin, but just by eating the meat and the 2 chips my glucose levels didn't rise as much as I honestly thought they would. My levels seem quite stable today I don't know if that's because the insulin is starting to kick in.

I haven't actually monitored my weight but I will start to do so tomorrow and wiegh myself every 3 days and keep note, I actually know nothing about diabetes and haven't been told anything Im only just working out what my glucose levels should be.

I am on humulin m3 kwikpen insulin.

I actual find the cgm monitor really handy to have because my nurse only wants me to test twice a day before breakfast and before dinner when I take the insulin, so with the cgm monitor I can see what foods I'm eating are causing my blood sugar levels to increase rapidly and what foods are okay to eat. Like I ate shredded wheat for breakfast yesterday as they were low in sugar but omg it shot up to almost 20 so I won't be touching then again. I'm finding the yoghurts I have which are sugar free don't effect my sugar levels as much. So it's really helping me learn what I can and cannot eat too.

 

[mrscjoslin]

The people with Type 2 I've encountered on here who have managed to get it prescribed all seem to have had to push for it, and make out their case. You probably need to make a list of reasons why the Libre would help you, and read it out to your nurse (also pointing out the NICE guidelines). If you’re prepared to play the epilepsy card, the fact that the Libre allows a third party to keep an eye on your levels to help keep you safe, or just the fact that you are juggling more than one condition, might tip the balance in your favour.

It's not about playing the epilepsy card, it's about my diabetes effecting my epilepsy like it did last week. I almost lost my life, my husband and 2 passer bys where getting ready to perform CPR on me. That's how serious epilepsy and diabetes is together.

 

[Leadinglights]

Something to be aware of is that it is not just sugar that comes into the equation but all carbohydrates as they convert to glucose. You need to be taking into account that, as you said shredded wheat is low in sugar but is high carbohydrate. That is not to say you can't have those things but it is then important that you are taking insulin to allow you to cope with that amount of carbs.
There is an online course which people can self refer, BERTIE which may be useful to you.

 

[rebrascora]

So, just to clarify, you have been diagnosed Type 2 diabetic for 13 years and you have never been advised or known that you needed to adjust your diet..... and you have continued to eat and drink high carb foods like full sugar coke and eat cakes and biscuits and pasta and breakfast cereal and chips and bread etc ....... until you collapsed on your honeymoon with a BG level of 33, which has unfortunately triggered an epileptic incident. That really is quite shocking, both that nobody mentioned it but also that you didn't pick up on it through the media etc. Diabetes is very often mentioned on TV and there have been lots of programs about it.

At the moment, since there is no evidence that you have had a hypo (low BG) and you are on a mixed insulin, then you may struggle to convince a GP or nurse to prescribe Libre under the current NICE guidelines but you could certainly try to make a special case for yourself and you would be most successful in that via a consultant, so I think you need to stress that your case is complicated by the epilepsy and therefore you need to be referred to a specialist diabetes clinic, where they can tailor your treatment to your specific needs. However it may be that with some dietary changes now, you might even manage to come off insulin. Dietary changes are far more powerful than most diabetes medication and in some circumstances as powerful as insulin if you are genuinely Type 2.

The reason I asked about weight loss is that that is usually an indicator of Type 1 diabetes and you don't generally need scales to tell you as the weight loss is usually rapid and dramatic, because your body can't get the energy it needs from the food you eat, so it starts breaking down your fat and muscle stores. However it doesn't always happen particularly if it is a slow onset Type 1. If you are now cutting carbs, I imagine you will start to see some weight loss anyway.
Do you have much/any weight to lose?

 

[Robin]

It's not about playing the epilepsy card, it's about my diabetes effecting my epilepsy like it did last week.

I didn’t mean any disparagement, and I’m sorry if a flippant turn of phrase offended you. What I meant by it, in non flippant terms, was that you need to ask for your epilepsy to be taken into consideration alongside your diabetes, and it might tip the balance in getting a favourable outcome for the Libre prescription.

 

[DaveB]

Hi. If you have excess weight then you could be a T2 with too much insulin due to insulin resistance. Reducing your carb intake will be vital. If you are slimw or lost weight when you BS rose rapidly then you are more likely to be late onset T1 when taking insulin is normally essential and will be due to low insulin output. Keeping the carbs down is also helpful. It sounds like you are on twice a day mixed insulin which is good to start with but you need to discuss moving to the Basla/Bolus regime with two different insulins and 4 or 5 daily injections. Control is much better with this regime. Also do ask for the two T1 tests i.e. GAD and C-Peptide