Thoughts on my next nurse diabetes review meeting

[buntings]

Hope this posting is allowed in the Newbies section - let me know if i need to post it elsewhere.

My hba1 has been slowly climbing since around 2009, it finally tipped into “prediabetes” in Sept 2018 (44 up from 41 in Dec 2016).

It’s continued to slowly creep up, got to type 2 levels (48) in Dec 2021 – after that it dropped marginally and subsequent tests were borderline at 47, 45, and 47.

The latest 6 month blood test (19th September) hit 54 - and I was recalled by the surgery for a diabetic review.....although not until 2nd November, apparently the nurses are busy giving flu vaccines. Meanwhile I am left to “stew” for over 6 weeks 😡 Its a good job I can see the results online and was expecting the call – the admin staff that rang up just said there was a problem and I needed to see a nurse, can you imagine what that uncertaintly might do to someone less switched on?!

Previous encounters with the practice nurses have been dismissive – they never seem to listen and simply regurgitate the same old dietary/exercise advice (which I have taken onboard and decreased sugar/carb intake considerably and feel this has at least slowed down the progression). Between 2010 and 16 I worked outdoors 5 days a week in a log yard hauling logs around and chopping them up for firewood in all weathers – even with that level of hard physical activity the numbers crept up but I should still have been more active apparently!

I am still reasonably active and will confess to being marginally overweight. The only apparent symptom I have, and have had for a year or more, is a continual mild tiredness, particularly after meals. The nurse dismissed this.

• I am a 60 year old male
• Both my father and my paternal grandfather have or had type 2.
• I am already on statins and 2 high blood pressure tablets.
• I have taken steps over the past few years to reduce sugar/carb intake
• I am reasonably active.

I would be comfortable with a type 2 diagnosis – it is clearly not unexpected and to a point would be welcome to put an end to the uncertainty.

I need thoughts on what I might expect (or even demand) from the nurse when we finally meet. Am I likely to finally get a diagnosis? The NICE guidance seems to open to some interpretation and despite the risk factors I am concerned the nurse will simply take the latest high reading as an abnormality and tell me to come back in another 6 months to check (which is how the NICE guidance could be interpreted).

Full set of tests back to 2006 below for background....it’s fairly steady increase

What hba1c level would normally result in medication being prescribed?
Any thoughts or ideas on what I should expect or be insisting on would be very helpful.

Thank you.

10/03/2006​	31​
09/03/2009​	31​
29/06/2010​	33​
16/09/2013​	35​
15/12/2014​	41​
10/12/2015​	41​
10/12/2015​	37​
29/12/2016​	41​
24/09/2018​	44​
23/09/2019​	40​
08/01/2020​	43​
01/12/2021​	48​
22/03/2022​	47​
22/08/2022​	45​
30/01/2022​	47​
15/09/2023​	54​

 

[Leadinglights]

Welcome to the forum
You sound to have been keeping things reasonably in check for a number of years but sometimes your body's tolerance to carbohydrates can change and even though you think you have maintained a reasonable diet it now is not so good. Ideas on diet have changed with the standard NHS Eat Well plate being too high in carbs for many to tolerate of managing their condition by diet. It may be time to review your carb intake and if your HbA1C is at 54mmol/mol then there is no reason why some further reduction in carbs shouldn't bring it down again without any medication.
Have a look at this link for some ideas for modifying your diet. It is a low carb approach which has been successful for many. https://lowcarbfreshwell.com/
Low carb is suggested as being no more than 130g total carbs per day, it is not NO carbs.
Keeping a food diary of everything you eat and drink with an estimate of how many carbs would be useful to give you an idea of how close you are to the 130g per day and help you see where you could make some savings.

 

[everydayupsanddowns]

Welcome to the forum @buntings

Sounds like you have been successfully managing your diabetes risk for some years now, so well done for that!

In a sense I think it is quite a common experience for people with diabetes to develop a greater understanding of the foibles and quirks of their own condition than a nurse could hope to achieve in a handful of 10 minute appointments over the years. What good HCPs can bring to the table is a good understanding of wider issues, up to date research, new treatment options and a broader perspective. Ideally you can develop a balanced and collaborative relationship between your intimate hands-on lived experience, and their broader more over-arching viewpoint. It is easier to develop this with some HCPs than others, of course!

I think perhaps you’ve correctly identified that you already have diabetes (a personal, not a medical view), and that what is important is now to manage it on an ongoing basis. Particularly in the light of close family history, and your gradual incremental rise in glucose levels.

Diabetes changes over time for many people, and it can be a matter of ongoing review and adjustment to keep glucose levels behaving themselves. With, or without the help of medication…Even in those without diabetes, HbA1c gradually increases with age.

54 is quite low on the scale, and many here would want an opportunity to try diet and exercise rather than jumping into meds if this was their first HbA1c, but with the changes you’ve already made you may feel you have less ‘wiggle room’?

Have you ever kept a food diary to try to get an estimate of your total carbohydrate intake per day? That might be a helpful exercise?

 

[rebrascora]

Hi and welcome.

Sorry to hear that your levels have gradually been creeping up and that you are now in the diabetes diagnosis range. 2 HbA1c results above 47 gets you a diagnosis if you have no obvious symptoms or one above 47 and obvious symptoms.

I appreciate that you are active and have reduced your carb intake but I wonder if there is any room for further reduction or if you are at a stage where you would welcome some medicinal help, which I think I am reading from the tone of your post. Metformin is the first line medication to be prescribed. It builds up slowly in the system over a period of days to help with any insulin resistance and reduce the amount of glucose that the liver releases. It is important to take it mid meal with a substantial amount of food to help prevent gastric/digestive upset as those are well known side effects although not everyone experiences them. It is however important to start on a low dose and build it up gradually over a period of weeks to enable your body to cope with it's effects. It can also prevent the absorption of vitamin B12 when taken long term which can affect nerve health and cause fatigue, so these are things to be aware of when taking this medication. There is a slow release version which can be easier on the digestive system, but they won't generally prescribe it until you experience problems with the regular form of it. After that there are a number of other medications which may be added if your levels continue to rise despite the metformin.... too numerous to mention and combinations of those medications if necessary, but at the level you are at, I would expect Metformin only to be offered as an initial intervention. You still need to continue with dietary modification and activity though, so it may be worth looking at your diet again and seeing if there is the opportunity to improve it further.

Many people here have found it really helpful to self fund a BG meter and use it to test just before a meal and then 2 hours afterwards to see how their body responded to that meal and if the food spikes their levels too high for too long then they reduce the amount of carbs in that meal next time, so say it is a Sunday dinner with roast potatoes and Yorkshire pudding, then choose one or the other but don't have both or half the portion of both and fill your plate up with low carb veg and perhaps a bit more meat the next time and test again to see how that helps. Some of us find that particular foods give us significantly different readings, so for instance porridge produces quite a significant difference of response in different people. Some find that it digests slowly and is an ideal start to the day and others of us find it is like rocket fuel and the glucose from it hits our blood stream fast and hard and sends our levels into orbit. The only way you would know this is via testing. Unfortunately many nurses and doctors suggest porridge as a good breakfast option for diabetics and it may be for some but a bad choice for others. Finding what your body can tolerate and what it can't is key to good diabetes management and soe people here suggest it is like driving a car without a speedometer and then getting a speeding ticket drop through the door when your HbA1c comes back higher than you would like. Testing effectively allows you to see your diabetes in numbers rather than managing it blind. Basic BG meters are relatively cheap to purchase at about £15 for a basic kit, but it is the consumables and particularly the test strips which hit the purse strings, so buying a meter with low cost test strips is something that we recommend (test strips are individual to each manufacturer and in some cases, each meter model. The two most frequently recommended models here on the forum for reliability and economy of use are the Gluco Navii and the Spirit Healthcare Tee2 in case you are interested. Both are available to buy online. You might also want to consider applying for the Freestyle Libre 2 Free trial which should give you 14 days of mostly very useful data although I would advise finger pricking initially to get a feel for testing in general and there are times when you need to double check Libre results with a finger prick so best to have that back up.

Anyway, I am very coscious that I have typed far too much but hope you will find some of it useful. If you want to give us an idea of what you currently eat, we could perhaps make suggestions for where you could easily cut more carbs and what other things you could have to fill you up instead and it certainly doesn't have to be all sack cloth and ashes. I know when I first started whittling my carbs down it got to the point that I felt like I was eating cardboard, but now I absolutely love eating low carb because I have learned how to make it enjoyable and the occasions when I end up eating higher carb foods like bread and pasta and rice and potatoes etc. I am usually somewhat disappointed.

If you have any questions do feel free to ask and good luck with finding a way forward which works for you. We are here if you need any help.

 

[Drummer]

Hello @buntings and welcome to the club no one wants to join.
You seem to have been somewhat neglected and left to become diabetic - I'm afraid that a HbA1c of 54 puts you into the diabetes range.
I can only recommend assessing your daily intake of carbohydrate and reducing it down, using a blood glucose tester to check on your levels after eating - that is a sure and certain way to see how much your meals affect you, and points to what you need to reduce or remove in order to get back into normal numbers.
It is usually very effective and by the time you have your review you could have solved the problem.
I dropped my HbA1c from 91 to 41 in 6 months and many others have seen similar results.
You can add in extra exercise - but usually people feel so much more energetic that it comes naturally.
The usual suspects are high carb foods, anything sugary or starchy, but the easy targets are anything made from grains, sweet fruit and veges such as potato which are high in starch. It still leaves a lot of things to eat.

 

[buntings]

Firstly, many thanks for the replies – clearly time and thought went into them. They certainly made me consider my situation.

I could just leave it there but I am in a very dark and negative mental place regarding my experience with the GP practice on this matter and for my own benefit I need to have a little “vent”, please forgive me.

I have thought back to my first review after I reached pre-diabetic levels & with hindsight realise that I was told virtually nothing by the practice nurse – it was a brief appointment and she basically just wrote down the diabetes UK URL and told me everything I needed to know was on there.

Regarding using a meter to investigate the affect of different foods on sugar levels – an excellent idea and one that I discovered when I first got into the pre-diabetic levels. At the time I bought a meter and started to investigate. At the next review meeting I took my results to discuss. The answer was such that I still recall it vividly – I was told by the practice nurse to stop as they didn’t encourage patients to self-test.

I am now just 2 weeks into the 6 week wait to see the nurse and my head has gotten into a right mess and convinced that it will be a pointless meeting (I do accept that my reading of 54 is not excessively high in the scheme of things and medication likely may not be on offer or appropriate – I hadn’t really considered that a diagnosis doesn’t necessarily mean intervention either). Turning 60 the day after the appointment wasn’t helping either!

I can deal with where I am medically – I can’t deal with another 4 weeks disturbed sleep getting stressed anticipating a likely pointless meeting. In order to remove that stress and I know it may be considered madness, this morning I cancelled the review meeting and will wait to see what next years blood tests yield and deal with it then if I need to.

Again, thank you for taking the time to respond and rest assured the comments were helpful but importantly they played no part in my decision this morning.

Finally, I am not seeking sympathy (and likely won’t revisit the forum for the moment) – I just needed to put thoughts to paper for my own benefit and to acknowledge the time and effort you have taken to respond, it is appreciated.

Thank you.

 

[Leadinglights]

Firstly, many thanks for the replies – clearly time and thought went into them. They certainly made me consider my situation.

I could just leave it there but I am in a very dark and negative mental place regarding my experience with the GP practice on this matter and for my own benefit I need to have a little “vent”, please forgive me.

I have thought back to my first review after I reached pre-diabetic levels & with hindsight realise that I was told virtually nothing by the practice nurse – it was a brief appointment and she basically just wrote down the diabetes UK URL and told me everything I needed to know was on there.

Regarding using a meter to investigate the affect of different foods on sugar levels – an excellent idea and one that I discovered when I first got into the pre-diabetic levels. At the time I bought a meter and started to investigate. At the next review meeting I took my results to discuss. The answer was such that I still recall it vividly – I was told by the practice nurse to stop as they didn’t encourage patients to self-test.

I am now just 2 weeks into the 6 week wait to see the nurse and my head has gotten into a right mess and convinced that it will be a pointless meeting (I do accept that my reading of 54 is not excessively high in the scheme of things and medication likely may not be on offer or appropriate – I hadn’t really considered that a diagnosis doesn’t necessarily mean intervention either). Turning 60 the day after the appointment wasn’t helping either!

I can deal with where I am medically – I can’t deal with another 4 weeks disturbed sleep getting stressed anticipating a likely pointless meeting. In order to remove that stress and I know it may be considered madness, this morning I cancelled the review meeting and will wait to see what next years blood tests yield and deal with it then if I need to.

Again, thank you for taking the time to respond and rest assured the comments were helpful but importantly they played no part in my decision this morning.

Finally, I am not seeking sympathy (and likely won’t revisit the forum for the moment) – I just needed to put thoughts to paper for my own benefit and to acknowledge the time and effort you have taken to respond, it is appreciated.

Thank you.

I hope you do stay with the forum as it is an opportunity to share your thoughts and get encouragement for your course of action.
As far as the response to testing from your nurse, I would have said to her ' do you drive your car and don't check your speedometer to know you are not exceeding the speed limit' because that is just like not checking your blood glucose with a home monitor.
It gives you control over managing your condition not them so carry on testing and you will find that it will be a useful tool and making some changes to your diet will give you something to focus on until your appointment.

 

[Lucyr]

I can deal with where I am medically – I can’t deal with another 4 weeks disturbed sleep getting stressed anticipating a likely pointless meeting. In order to remove that stress and I know it may be considered madness, this morning I cancelled the review meeting and will wait to see what next years blood tests yield and deal with it then if I need to.

That does seem a bad decision. If the appointment changes nothing then you know youre on the right track and you’re in no worse position after it than before. If it’s helpful then you’re in a better position. Both of those outcomes sound good to me.

 

[rebrascora]

Really hope you will stay with the forum for support and advice and to vent when necessary.... that latter is an important function of the forum.

I can understand your reasons for cancelling the appointment. At least you have your HbA1c result. If you don't want to start taking medication and there is room for some further adjustment in your diet, then it seems that you can continue to do as you have been doing for the past year. I can certainly sympathize with your need to relieve the stress of anticipating that appointment. I wonder if writing to your your GP practice manager explaining how you feel and why you have cancelled your appointment with the nurse would be helpful, as I am sure there will be other people with far worse results than yours dreading their appointment with that nurse but needing more support.

I am very pleased that you have a BG meter and can keep an eye on your levels, particularly now that you have cancelled the appointment, so that if things start to change more drastically, you can make an appointment to see a GP, if you don't feel you can deal with this nurse.