The Informed Patient

[SOTR]

I would like to vent a little.. and get any feedback. I hve had type 2 for maybe 8 r 10 years. When I was first diagnosed my GP surgery told me to control it with diet and weight. They prescribed lancets but would not prescribe testing strips, saying this was practice policy. I got my own meter and test strips for a time, but found it difficult to keep up with the testing.
My practice want regular HbA1c tests and these are what they rely on for may management. I have a full time job and they dont seem to realise I cant just ump and get blood tests done.
I find that it is no use being told if I have been 'good' or 'bad' over the last three months - it does not help me with today. Also does not help me to match up how I am feeling today - thirsty, a bit under the weather with glucose levels.

I am told that my last level was 80, which is a bit down from the last one. GP is still very concerned.
I just feel that I am being treated like an idiot who must be partonised. I am a scientist and can understand graphs and scientific concepts. They have never told me the units that '80' represents.
One time when I tried to ask a GP sitting in front of his screen what the norml range of HbA1c would be he got a bit uppity.
I feel like they are acting like shamen in their tents - with the juju being a computer terminal.

I've never been told what the units are and importantly how high '80' is in comparision to what I should aim for only that it is high.
Warming to my theme I am on Metformin and recently Glycazide. I've never had it explained what the method of operation of these drugs is - which would help me understand why I have to take them at certain times and why it would be bad to miss doses, as I sometimes do.

Also they are always keen on me taking statins. My cholesterol is not high and I feel this is a knee jerk reaction to guidance which is circulated by NICE. I did take statins but saw press reports that the one I was on was causing kidney damage a few years ago.
Last consultation with the GP and they were pushing me to take statins again.

Also GP mentioned a calculation they do which indicates I am at a high risk of a heart attack (or some big event) in the next ten years. Again that is said in th emanner of a teacher to a primary school pupil - why wont they explain where this calculation comes from and what the inputs are. I suspect it is a calculation done by their practice management computer systsems. I have no problem with the calculation, I just dont like being told certain number or a risk without being informed about what is behind it.

 

[Goonergal]

I've never been told what the units are and importantly how high '80' is in comparision to what I should aim for only that it is high.

Hi if you’re in the UK, then the units will be mmol/mol. 80 is quite a way up the scale - the threshold for diabetes diagnosis in the UK is 48, with pre-diabetes 42-47. This chart might help. (It should enlarge if you click on it). Editing to say it seems to be in ‘old money’ i.e percentages. I’ll look for another/ a converter for you. Found one, and here’s a calculator: https://www.diabetes.co.uk/hba1c-to-blood-sugar-level-converter.html

80 mmol/mol is equivalent to 9.5% on the ‘old’ scale.

Also GP mentioned a calculation they do which indicates I am at a high risk of a heart attack (or some big event) in the next ten years.

It’s likely there’re using on of the variants of this: https://www.qrisk.org/

Statins/cholesterol - you might find this thread helpful: https://www.diabetes.co.uk/forum/threads/cholesterol-and-statins.156985/

Warming to my theme I am on Metformin and recently Glycazide. I've never had it explained what the method of operation of these drugs is - which would help me understand why I have to take them at certain times and why it would be bad to miss doses, as I sometimes do.

Metformin doesn’t work directly on blood glucose, rather it works to reduce the amount of sugar your liver throws into the bloodstream, so it can help with insulin resistance. It’s effect builds up over time so the odd missed dose won’t have an impact. I believe the suggestion that they be taken with food is to minimise any gastric side effects.

I know very little about gliclazide, so will leave others to comment on that.

 

[bulkbiker]

Wow your surgery sounds even more useless than mine.
The HbA1c units are mmol/mol.
80 mmol/m is fairly high mine was 87mmol/m on diagnosis and was quickly lowered by reducing my eating window and trying to eliminate carbohydrate from my diet.
This turned out to be relatively successful.
THe HbA1c ranges used in the UK for diagnosis are
48 or over T2
42-47 "Pre-diabtetes"
Under 42 "normal"

Hope that helps a bit.

 

[bulkbiker]

@Goonergal You're quicker than me!

 

[Brunneria]

Hi and welcome to the forum,

I absolutely appreciate your frustration, and totally agree that no one should be patronised by their doc.

However, all the the information that you require is freely available on the internet.
I think we all start off with the belief that our doctor's have some kind of superior understanding, and esoteric knowledge, but the fact is that now we have access to the internet, we can often become better informed on our chosen subject than a medical professional who is a general practitioner, and who has to maintain a general understanding on 100s of conditions, any one of which could walk into their consulting room for a brief 10 min visit.

My suggestion to you would be to have a good rummage through the DCUK website
https://www.diabetes.co.uk/
It won't answer all your questions, but will provide a few links and act as a springboard for further searches across the wider web.

I would also do a google search for the medications you are on, and read the patient information leaflets that come in each box when you pick it up from your pharmacist. There is useful info in there, including the name of the drug company. You can use that to visit their website, and search out other, online, patient info leaflets, and the various contraindication lists, and how the drug works, its half life, and so on.

It is my firm belief that with diabetes, whatever the type, it is in our best interests to become 'an expert patient'.
Expert in our own personal situation, and the treatments we are offered.
It takes some effort, but it pays off tremendously.

 

[EllieM]

Welcome to the forums.

Hba1cs are a measure of your average blood glucose over the last 3 months. A non diabetic typically maintains blood glucose levels of 4-8mmol/L (maybe the occasional spike higher), and an hba1c of 42 mmol/mol or less. 42-48 hba1c indicates prediabetes (your levels are on the way to diabetic) and 48 is the point at which they diagnose you diabetic. 48 corresponds to an average blood sugar level of 7.8 mmol/L.

An hba1c of 80 corresponds to an average bg of 12.5mmol/L, which is high enough to make your kidneys pass sugar into your urine and generally damage a lot of bodily organs (kidneys, nerves, eyes... and it's not great for your heart either)

As a T2 diabetic, you have a genetic intolerance for carbohydrates, and are insulin resistant, needing more and more insulin to process the carbs that you eat. Unfortunately the food industry's obession with reducing fat content has led to an alarmong increase in the carb content of modern processed food, and your body has paid the price. High levels of insulin and highblood sugars result in weight gain, which is why so many T2 diabetics are overweight, it's a symptom not a cause. And unfortunately weight gain increases insulin resistance.....


If you want to take control of your situation then you need a blood testing meter (your doctor should have given you one if you are now on gliclazide, which increases the body's production of insulin and therefore can cause low blood sugar). If you reduce the amount of carbohydrate in your diet then your meter will tell you whether your body can cope with the load (aim for an increase of 2mmol/L or less between first bite of meal and 2 hours later). And as you are on gliclazide, you'll need to watch out for low blood sugars (less than 4mmol/L) as this can cause disorientation and confusion.

Good luck. You can take control of this, but you need to realise that many GPs are not very clued up about any form of diabetes, they just go through a series of medications recommended by the NHS.

 

[SOTR]

Wow your surgery sounds even more useless than mine.
The HbA1c units are mmol/l.
80 mmol/m is fairly high mine was 87mmol/m on diagnosis and was quickly lowered by reducing my eating window and trying to eliminate carbohydrate from my diet.

Bulbiker, what is an eating window please?

 

[bulkbiker]

Bulbiker, what is an eating window please?

A period of time you eat in.
For example I never have breakfast so extend my overnight fast until mid afternoon usually "breaking fast" at about 3 pm.
I then usually have dinner at 7 pm so have a 4 hour (ish) "eating window" the rest of the time no solids just coffee with double cream and maybe tea (although that usually accompanies the first food at 3 pm.

By not eating you don't raise blood sugar (coffee with cream has zero impact on my bloods) and don't trigger insulin production.
Allows the body to burn off the excess glucose we as T2's have in the body. Over time with few carbs once the glucose is used up we start to burn fat as fuel.. both dietary and body leading to weight loss.

Dr Jason Fung has lots of free videos and info on youtube or his book "The Diabetes Code" .

 

[SOTR]

Thankyou Bulbiker. Everyone keeps saying that breakfast is the most important meal of the day and that you should never skip breakfast. I guess that should be revised for Type 2s!

 

[zand]

Thankyou Bulbiker. Everyone keeps saying that breakfast is the most important meal of the day and that you should never skip breakfast. I guess that should be revised for Type 2s!

It is the most important meal of the day, but you don't have to have it in the morning
I have mine anytime from 3.30 pm onwards.

 

[Fenn]

Hi OP, welcome

Wait! You guys eat breakfast at 3pm? Lol

I wake at 5am I do a very physically demanding job, by 3pm I have done 8 hours graft, I’m not sure you should be recommending this to someone looking for their path, I personally would fail at this method, that can’t be good?

 

[KK123]

Hi OP, welcome

Wait! You guys eat breakfast at 3pm? Lol

I wake at 5am I do a very physically demanding job, by 3pm I have done 8 hours graft, I’m not sure you should be recommending this to someone looking for their path, I personally would fail at this method, that can’t be good?

Hi Fenn, it's like every other approach to managing a condition really, it all depends on the individual. People will tell others what their own approach and methods are and others can then decide for themselves, (notwithstanding the rules on medicinal advice, etc or whether that person has other issues but again that person would need to work it out for themselves). I haven't had breakfast for many years and I too work in a physically demanding job, that starts at 5am. I don't have my first meal of the day until around 5pm actually. Everyone is different and as far as I know it hasn't done me any harm. x

 

[zand]

Hi OP, welcome

Wait! You guys eat breakfast at 3pm? Lol

I wake at 5am I do a very physically demanding job, by 3pm I have done 8 hours graft, I’m not sure you should be recommending this to someone looking for their path, I personally would fail at this method, that can’t be good?

My point was really that the first meal of the day breaks the overnight fasting, so it doesn't matter when you have it, it's still breakfast

 

[Fenn]

Hi Fenn, it's like every other approach to managing a condition really, it all depends on the individual. People will tell others what their own approach and methods are and others can then decide for themselves, (notwithstanding the rules on medicinal advice, etc or whether that person has other issues but again that person would need to work it out for themselves). I haven't had breakfast for many years and I too work in a physically demanding job, that starts at 5am. I don't have my first meal of the day until around 5pm actually. Everyone is different and as far as I know it hasn't done me any harm. x

Wow! By 5pm I’m getting ready for meal three lol

My point is or was, I would run a mile from someone telling me I shouldn’t eat until 3 or 5pm, I would assume this to be totally bananas so could potentially leave behind some other useful info, while running.

This is not to say I think it is bananas, I love that this works for you all, but I accept it in the same way I accept leaches might actually help cure depression, I just won’t be trying it

I am certain people would look at some of the stuff I do with surprise, but with that in mind, I wouldn’t reply to a new persons with type 2’s first post with, you should take insulin.

This is mostly tongue in cheek, I hope I haven’t offended whilst trying to make a point, forgive me please if so, no soft yellow fruits were harmed in the writing of this post.

 

[bulkbiker]

Thankyou Bulbiker. Everyone keeps saying that breakfast is the most important meal of the day and that you should never skip breakfast. I guess that should be revised for Type 2s!

A lot of "what people say" is complete nonsense when you look at it with a cold eye.
Similar to "cholesterol" being bad when in fact without it we'd be dead!

 

[NicoleC1971]

I would like to vent a little.. and get any feedback. I hve had type 2 for maybe 8 r 10 years. When I was first diagnosed my GP surgery told me to control it with diet and weight. They prescribed lancets but would not prescribe testing strips, saying this was practice policy. I got my own meter and test strips for a time, but found it difficult to keep up with the testing.
My practice want regular HbA1c tests and these are what they rely on for may management. I have a full time job and they dont seem to realise I cant just ump and get blood tests done.
I find that it is no use being told if I have been 'good' or 'bad' over the last three months - it does not help me with today. Also does not help me to match up how I am feeling today - thirsty, a bit under the weather with glucose levels.

I am told that my last level was 80, which is a bit down from the last one. GP is still very concerned.
I just feel that I am being treated like an idiot who must be partonised. I am a scientist and can understand graphs and scientific concepts. They have never told me the units that '80' represents.
One time when I tried to ask a GP sitting in front of his screen what the norml range of HbA1c would be he got a bit uppity.
I feel like they are acting like shamen in their tents - with the juju being a computer terminal.

I've never been told what the units are and importantly how high '80' is in comparision to what I should aim for only that it is high.
Warming to my theme I am on Metformin and recently Glycazide. I've never had it explained what the method of operation of these drugs is - which would help me understand why I have to take them at certain times and why it would be bad to miss doses, as I sometimes do.

Also they are always keen on me taking statins. My cholesterol is not high and I feel this is a knee jerk reaction to guidance which is circulated by NICE. I did take statins but saw press reports that the one I was on was causing kidney damage a few years ago.
Last consultation with the GP and they were pushing me to take statins again.

Also GP mentioned a calculation they do which indicates I am at a high risk of a heart attack (or some big event) in the next ten years. Again that is said in th emanner of a teacher to a primary school pupil - why wont they explain where this calculation comes from and what the inputs are. I suspect it is a calculation done by their practice management computer systsems. I have no problem with the calculation, I just dont like being told certain number or a risk without being informed about what is behind it.

I think this has happened to many diabetics and it is frustrating given that some of us find it easier to take advice offered if we know why the advice is being offered. Please use your frustration to good effect by doing a little more homework on issues such as best ways to handle your glucose levels which are abnormal and evaluating your actual risk of heart disease.
Re the former I think it is good to understand what high glucose levels mean in terms of diabetes e.g. I am type 1 and have a bad result (64) because I haven't got any natural insulin and ;you, as a type 2, have got plenty of insulin and are likely to be very insulin resistant. 2 books which I've listened to that explain these ideas brillantly are Dr Jason Fung's The Diabetes Code and Ben Bikman's Why We Get Sick (on the topic of insulin resistance in general). This could help you understand why just looking at blood sugars is not helpful and both books also cover helpful and practical ways of naturally lowering both insulin and blood glucose levels with reference to how this works in comparison to pharmaceutical methods. YOur doctor is likely to be very au fait with pharmaceutical methods so it is legitimate to look at other perspectives IMO!
Re your heart attack risk. Look up the QI risk calculator and this will give you the risk factor bingo questions that you are being asked (age, gender, smoking history, bmi, lipids breakdown, blood pressure and diabetes status. The latter does tend to indicate that your risk will be higher so they will prescribe a statin at a lower level of cholesterol than would be indicated for a non diabetic. Statins are known to reduce ldl cholesterol and this is believed to reduce heart attack risk but the latter belief is controversial and particularly in the case of those who are yet to be diagnosed with heart disease or haven't had a heart attack. Ditto the belief that eating less saturated fat reduces your risk of heart disease.
Good luck and here's to you the patient feeling more knowledgable next time you have a diabetes review with your GP or nurse! It is your health so your responsibility ultimately after all.

 

[Daibell]

Hi. First take control of your data by asking/insisting that the surgery gives you access to your online results including coded input and test results. You have a right to access these and complain to the Practice Manager, PPG team or higher if it's refused. I always attend my reviews knowing my numbers and it avoids time-wasting between the nurse and myself as we just discuss what to do going forward. Yes, yourHBA1C is high and a low-carb diet will be key. Metformin is a good, safe drug but never does much. It just reduces glucose (glucagon) output from the liver. Gliclazide stimulates the pancreas beta cells to produce more insulin. Many T2s will have insulin resistance due to excess weight and the Glic may not do much as it will be adding more insulin when you already have too much. Personally I don't think it matters too much when you have meals, whether you fast or whatever. Just get the carbs down and see how you go. Fats and proteins are fine. BTW I had to buy my own strips for years. That did change when I went onto insulin.

 

[bulkbiker]

Hi OP, welcome

Wait! You guys eat breakfast at 3pm? Lol

I wake at 5am I do a very physically demanding job, by 3pm I have done 8 hours graft, I’m not sure you should be recommending this to someone looking for their path, I personally would fail at this method, that can’t be good?

Plenty of athletes and body builders do their workouts fasted and claim to get great benefits from it..
I am neither so can't really say but I rarely get really hungry when not eating any more.

 

[KK123]

Wow! By 5pm I’m getting ready for meal three lol

My point is or was, I would run a mile from someone telling me I shouldn’t eat until 3 or 5pm, I would assume this to be totally bananas so could potentially leave behind some other useful info, while running.

This is not to say I think it is bananas, I love that this works for you all, but I accept it in the same way I accept leaches might actually help cure depression, I just won’t be trying it

I am certain people would look at some of the stuff I do with surprise, but with that in mind, I wouldn’t reply to a new persons with type 2’s first post with, you should take insulin.

This is mostly tongue in cheek, I hope I haven’t offended whilst trying to make a point, forgive me please if so, no soft yellow fruits were harmed in the writing of this post.

Hi Fenn, of course you haven't offended anyone! The reason this site is popular is because there are SO many viewpoints. I don't think anyone said 'you shouldn't' of course. To me though, rather than looking at it as if it's 'out there' I just think of meals as a random time of the day when I want to eat a meal, whether it's 4am, 3pm, or even 10pm as long as I'm not suffering from that then it's fine! I also think half the time it's more to do with tradition and what has gone before rather than any actual need to eat at set times, same as people thinking breakfast must involve 'breakfast type items', Why??? Leeches!!! lol. x

 

[Fenn]

Plenty of athletes and body builders do their workouts fasted and claim to get great benefits from it..
I am neither so can't really say but I rarely get really hungry when not eating any more.

I skip breakfast myself, out of choice because all I could eat at 5am would be cereal, but by 10am I am ravenous! By 3pm I think I would be eating my own body parts lol