Working hard

[happydog]

Since I last posted I have been working hard to try to get my BG levels down. They are now about 6.5 on average but I do get rogue figures of 9+ and 4+. Had a message today asking me to have another blood test. I have been naughty and booked it for the end of July as I am aware that the DN is keen to get me onto medication. I am hopeful (ever an optimist) that I can improve a bit more without medication. I am a bit confused as the Oncologist said that my diabetes was not to be too concerned about and that anything under 10 was OK (thought it was 8.5). I have to take the oestrogen suppressant Letrozole and Levothyroxine for an underactive thyroid, both contain sucrose , so probably don't help. So what is current thought on BG levels? Is under 10 OK or should it be lower? A CT scan that I had has also shown that part of my pancreas has atrophied and the duct is enlarged, which does not sound good. In September it will be 10 years without medication, I'd love to get to that goal, but maybe it can't be done . Having survived the breast cancer etc I am just taking life one day at a time. Sorry have rambled on a bit.

 

[everydayupsanddowns]

Sounds like your Dr was suggesting a personalised range for you @happydog, which is just as it should be 🙂

The guideline levels I am familiar with for T2 on diet and exercise are 4-7mmol/L before meals and no higher than 8.5mmol/L by 2 hrs after meals, but…

The International Consensus on Time in Range for people using Libre / CGM was 70+% of the time 4-10mmol/L - so I think 10 is felt to be appropriate in some circumstances.

Of course these are only guidelines, and there are no hard and fast cut-off points where 9.9 is completely fine, but 10 is a disaster. For my money it’s more about aiming to keep things as steady and in range as possible for as much of the time as we can, but accepting that having diabetes will always mean having a proportion of results outside of that

 

[rebrascora]

So good to hear from you @happydog and that things are going so well. I can imagine you must be working pretty hard to keep those levels where they are, so a huge WELL DONE from me!

I think that some of these clinicians have got a bit of information about Libre "time in range" targets and don't quite comprehend that they don't fully apply in the same way to people who are finger pricking ie just doing BG tests before food and maybe 2 hours afterwards, whereas Libre captures all the time in between those 2 hour points when levels will almost certainly go higher. Not sure if that makes sense, but your levels will likely spike higher than the 8.5 or 9 between 1 and 2 hours and be on the way back down at 2 hours, so if you can reasonably try to keep it under the 8.5 most of the time at the 2 hour point and still have a decent quality of life then your actual peak should stay mostly under 10 or not spend much time above (if you had a Libre to see it). It is however a balancing act with the practicalities of maintaining such tight control especially with the medication you are on, your mental well being and enjoying life and your food. You have to find that balance for you as an individual and maybe having a slightly higher target will take a bit of mental strain off you.

Good luck and do keep coming back to update us.... or better still, join us on the "Group 7day waking average" thread and be part of our morning "drop in" community. You would be very welcome. All we do is post our morning waking reading and have a bit of a chat/banter.... the "average" thing has long gone by the board. Would be lovely to see you there if you fancy it but I appreciate that it isn't for everyone, so no pressure.

 

[happydog]

Thank you Everydayupsanddowns for your excellent reply. Throughout having this disorder I find the conflicting information difficult. DN says I need medication, oncologist says up to 10 is fine and that T2 is not my major health concern at present. You have always been kind, wise, helpful and encouraging. Thank you. I will continue to work hard 🙂

 

[happydog]

Thank you Rebrascora for your helpful reply. I am wondering if I should get one of these Libra devices? DN says there is no need to test as I am T2 and is always trying to get my strips (25 per month) taken off my prescriptions. I have never had much help with diabetes from the surgery and have been left to my own devices. DN is even anti Low carb diet! She says that every meal should have 60% of carbohydrates. She says that trying to control diabetes with diet and exercise is futile because the disease is progressive and I am just making life difficult for myself. Metformin really did not suit me. I had constant nausea and tummy pain with diahorrea when I tried it before my chemotherapy. Gliclazide made my BG go way down and so was not useful either. I am going to continue to try to get the BG better. My BG is always up first thing in the morning so I don't want the embarrassment of telling everyone just how bad it is. For example 6.0 when I went to bed last night 9.2 this morning, now 7.2. I do appreciate your kindness in replying. Thank you.

 

[Leadinglights]

Thank you Rebrascora for your helpful reply. I am wondering if I should get one of these Libra devices? DN says there is no need to test as I am T2 and is always trying to get my strips (25 per month) taken off my prescriptions. I have never had much help with diabetes from the surgery and have been left to my own devices. DN is even anti Low carb diet! She says that every meal should have 60% of carbohydrates. She says that trying to control diabetes with diet and exercise is futile because the disease is progressive and I am just making life difficult for myself. Metformin really did not suit me. I had constant nausea and tummy pain with diahorrea when I tried it before my chemotherapy. Gliclazide made my BG go way down and so was not useful either. I am going to continue to try to get the BG better. My BG is always up first thing in the morning so I don't want the embarrassment of telling everyone just how bad it is. For example 6.0 when I went to bed last night 9.2 this morning, now 7.2. I do appreciate your kindness in replying. Thank you.

I think it a great pity that it is not mandatory for DSN s to come to this forum to learn just how successful people are when they do take control of their diabetes and ignore the advice from the surgery. That negative attitude is helpful to no-one. I can't imagine how any of her Type 2 patients will get good blood glucose results with meals of 60% carbs.
Your morning rise could be that infamous Foot on the Floor syndrome.

 

[rebrascora]

My BG is always up first thing in the morning so I don't want the embarrassment of telling everyone just how bad it is. For example 6.0 when I went to bed last night 9.2 this morning, now 7.2. I do appreciate your kindness in replying. Thank you.

Please don't feel embarrassed or guilty that your morning levels are high. You are managing a very difficult set of circumstances and there is no judgement on that thread. Some people log in with readings in the mid teens, so you certainly would not be the highest. It is more about community than your actual numbers although if they are obviously dangerously high or low then we might comment that you needed to seek more help, but 9s are not something we would get concerned about. You should never feel awkward about it when you are working hard to manage your diabetes as well as you can. This culture of guilt with diabetes is so mentally crippling, please try to bury it somewhere where it can never resurface because you don't need it's negativity.

It is really sad, concerning and incredibly annoying that there are nurses like that within the system and I cannot imagine what they hope to achieve with such an attitude other than depression and failure in their patient management. I am so sorry you have been cursed with such a first line "support worker", but good for you in ignoring her advice and finding a much better way. You have to worry about all her other diabetic patients who don't have the gumption to do the research and realise how badly they are being cared for, but thankfully you know better.

 

[gll]

My BG is always up first thing in the morning so I don't want the embarrassment of telling everyone just how bad it is.

Some people log in with readings in the mid teens, so you certainly would not be the highest.

*raises hand* I will make your morning readings look AMAZING! (for now - I'm a work in progress)

Never been judged, only helped when I kept running higher and encouraged to seek more support from my healthcare team.

 

[trophywench]

That person isn't a diabetes nurse, they are a prophet of doom. Why bother treating anything at all, for anyone on earth, when we're all gonna die anyway ......

 

[Proud to be erratic]

I think it a great pity that it is not mandatory for DSN s to come to this forum to learn just how successful people are when they do take control of their diabetes and ignore the advice from the surgery. That negative attitude is helpful to no-one. I can't imagine how any of her Type 2 patients will get good blood glucose results with meals of 60% carbs.
Your morning rise could be that infamous Foot on the Floor syndrome.

I wholly agree with the underlying principle of your post @Leadinglights . I think, in this instance, that @happydog originally referred to a DN which I understood to be the Diabetes Nurse from the Surgery. They are also people who would benefit from reading a diabetes forum.

@happydog, at post#4 you referred to contradictory advice (which others have commented on). In my surgery it is very clear that the nurse who has been designated as the focal point for diabetes within the Practice is by no means particularly knowledgeable or specialised in diabetes and all of its variability - even within T2. I have no idea how much DM training she originally had, nor whether she attends periodic refresher courses; but I'm pretty sure there are no periodic visits to the Surgery by hospital based DSNs to allow her to get updated that way. What our focal point nurse does have is an excellent "practice manner" (I was going to say bedside manner, but doesn't seem appropriate); she is calming, courteous, polite, chats with her patients (or at least with my wife and I) and generally ticks all those boxes one would like to find in a surgery practice nurse. But I would take my Oncologist's advice over the Practice nurse for a diabetes topic.

I read, this week in my Balance magazine, a reminder that 1 in 14 people in UK have DM. That translates to 4.8 million people out of our growing 67+ million and I understand 90% of those are T2. Perhaps this is an emphasis that should be addressed within the NHS to improve the training, updating and specialisation of Practice staff for DM? I wonder if a copy of Balance should be sent to every GP Surgery in UK? It would be a start and might prove to be a really good modest investment?

 

[Leadinglights]

I wholly agree with the underlying principle of your post @Leadinglights . I think, in this instance, that @happydog originally referred to a DN which I understood to be the Diabetes Nurse from the Surgery. They are also people who would benefit from reading a diabetes forum.

@happydog, at post#4 you referred to contradictory advice (which others have commented on). In my surgery it is very clear that the nurse who has been designated as the focal point for diabetes within the Practice is by no means particularly knowledgeable or specialised in diabetes and all of its variability - even within T2. I have no idea how much DM training she originally had, nor whether she attends periodic refresher courses; but I'm pretty sure there are no periodic visits to the Surgery by hospital based DSNs to allow her to get updated that way. What our focal point nurse does have is an excellent "practice manner" (I was going to say bedside manner, but doesn't seem appropriate); she is calming, courteous, polite, chats with her patients (or at least with my wife and I) and generally ticks all those boxes one would like to find in a surgery practice nurse. But I would take my Oncologist's advice over the Practice nurse for a diabetes topic.

I read, this week in my Balance magazine, a reminder that 1 in 14 people in UK have DM. That translates to 4.8 million people out of our growing 67+ million and I understand 90% of those are T2. Perhaps this is an emphasis that should be addressed within the NHS to improve the training, updating and specialisation of Practice staff for DM? I wonder if a copy of Balance should be sent to every GP Surgery in UK? It would be a start and might prove to be a really good modest investment?

I had made the assumption that a DM nurse at a GP surgery would have good knowledge of diabetes.

 

[Proud to be erratic]

I had made the assumption that a DM nurse at a GP surgery would have good knowledge of diabetes.

As a young man when there was so much to learn about life, work etc (?!?) .... several maxims were imposed on me: one was "never assume, check".

I no longer can recall each one of those 'life lessons' but they have a knack of coming to mind when relevant. I don't always still check rather than assuming (it was an almost unforgivable error in my younger years); but inevitably when something goes awry that maxim comes back to me and squats heavily on my shoulder!!

 

[rebrascora]

Sadly there are still one or two usually older DSNs and consultants who are of a similar mindset to this nurse of happydog's, so it isn't always just practice nurses, but certainly more likely to be found at that primary care level.

 

[happydog]

Thank you all for your comments. Sadly my surgery does not subscribe to very up to date methods of diabetes management. My doctor was also very against trying to control T2 diabetes with diet and exercise. He was very clear that it was not possible and if it did make a difference it would be temporary. He is also adamant that it is progressive. I am just going to continue to try to achieve control using this method for as long as I can. 😉

 

[everydayupsanddowns]

You show ‘em Happy Dog! More power to your glucose-balancing elbow 🙂

 

[trophywench]

I'm absolutely certain both GPs and GP surgery nurses are SUPPOSED to undertake CPD - Continuing Professional Development. I know i had to as an insurance broker and had to gain X number of CPD points every year in order to remain employed in that speciality - but no idea whatever what the rules are for medics. Our GP surgery is closed (locked barred and shuttered) every Weds afternoon 'For Staff Training'. No idea whether that happens then, or not!