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Not diagnosed yet but…

A

Ade_essex

New Member
Hello all

First of all, I wanted to say thanks for allowing me to join the forum. It seems like a really great place to exchange valuable information about diabetes. This is a bit of a funny one really but I hope you’ll bear with me and with my introduction to diabetes.

So I’m a 60 year old male who has just retired from a pretty sedentary office job. Stress levels have been fairly high and I’ve had a poor diet, with too much stodge, for too long. But part of my preparation for retirement was to have a GP wellness assessment and to use that as a basis for getting more active, eat better and enjoy life a bit more. First step was to get a blood test. All went well except that the surgery called me up two days later to make an urgent appointment to see the GP. Except it was so urgent that they couldn’t see me for two weeks. I’ve got that appointment next week. Being a bit concerned, I have had high cholesterol readings in the past, I looked to see if my results were on my NHS app. Sure enough they were. One result showed slightly high cholesterol but it was the blood glucose test that floored me. 101 mmol/mol. Even I can see that is extremely high. I guess that’s why the GP wants to see me!

Three things are on my mind right now. Firstly, I’m doing my nut in worrying about what I may have and my prognosis for the future. I’m not asking for a diagnosis here but any advice would be gratefully received given the numbers. Secondly, I’ve had no real symptoms of diabetes throughout my life. I’m not particularly tired all the time. I walk a lot and workout a couple of times a week. Yes, I sometimes have a snooze after dinner but nothing out of the ordinary. I should probably say now that I’m of mixed European and East Asian heritage which, I believe, may have some bearing on my risk factors. And thirdly, what kind of thing should I be asking the GP next week? I guess that depends on the diagnosis but I do want to be an active participant in this appointment, not just sit there like a dummy.

So that’s it. I’m not a diagnosed diabetic yet but feel it’s only a matter of days away. Grateful for any thoughts.

Ade
 
Ade_essex said:
Hello all

First of all, I wanted to say thanks for allowing me to join the forum. It seems like a really great place to exchange valuable information about diabetes. This is a bit of a funny one really but I hope you’ll bear with me and with my introduction to diabetes.

So I’m a 60 year old male who has just retired from a pretty sedentary office job. Stress levels have been fairly high and I’ve had a poor diet, with too much stodge, for too long. But part of my preparation for retirement was to have a GP wellness assessment and to use that as a basis for getting more active, eat better and enjoy life a bit more. First step was to get a blood test. All went well except that the surgery called me up two days later to make an urgent appointment to see the GP. Except it was so urgent that they couldn’t see me for two weeks. I’ve got that appointment next week. Being a bit concerned, I have had high cholesterol readings in the past, I looked to see if my results were on my NHS app. Sure enough they were. One result showed slightly high cholesterol but it was the blood glucose test that floored me. 101 mmol/mol. Even I can see that is extremely high. I guess that’s why the GP wants to see me!

Three things are on my mind right now. Firstly, I’m doing my nut in worrying about what I may have and my prognosis for the future. I’m not asking for a diagnosis here but any advice would be gratefully received given the numbers. Secondly, I’ve had no real symptoms of diabetes throughout my life. I’m not particularly tired all the time. I walk a lot and workout a couple of times a week. Yes, I sometimes have a snooze after dinner but nothing out of the ordinary. I should probably say now that I’m of mixed European and East Asian heritage which, I believe, may have some bearing on my risk factors. And thirdly, what kind of thing should I be asking the GP next week? I guess that depends on the diagnosis but I do want to be an active participant in this appointment, not just sit there like a dummy.

So that’s it. I’m not a diagnosed diabetic yet but feel it’s only a matter of days away. Grateful for any thoughts.

Ade
Click to expand...
To be an informed participant download Professor Roy Taylor's Life Without Diabetes type 2 Kindle edition from Amazon and/or watch his 2024 claude Bernard lecture find it wirh Google
 
Hi @Ade_essex !

Welcome to the forum! Thank you for such an open and thoughtful introduction. It’s completely understandable that your mind is racing right now, especially after seeing a result like that pop up unexpectedly. You're certainly not alone - a lot of people here can relate to that shock and uncertainty that comes with a possible diagnosis.
You’re right that an HbA1c result of 101 mmol/mol is quite high. It would fall in the range of a diabetes diagnosis, but of course, your GP will confirm and guide you through what that means specifically for you if that does turn out to be the case. It’s very possible that your high reading has been building quietly over time - many people go years without classic symptoms or may put things like tiredness or changes in thirst down to stress, diet, or age. Genetics can absolutely play a role too, so it’s great that you’re already thinking about your background and risk factors.
In terms of what you can ask or discuss with your GP - it’s brilliant that you want to be proactive and engaged. Here are a few things you might consider bringing up at your appointment:
  • Clarification of your test results and whether any further testing is needed (e.g. another HbA1c, fasting glucose etc).
  • What type of diabetes they suspect and what the likely next steps will be (e.g. lifestyle management, medications, referrals).
  • Support available to help you make sustainable changes - whether that's a diabetes education course, a dietitian referral, or help accessing blood glucose monitoring tools if appropriate.
  • Your current goals - it’s helpful to mention that you’re retiring, aiming to eat better, get active, and want to protect your long-term health. That context can help shape your care plan.
Also, just to say: that limbo period between seeing a number and getting official confirmation is incredibly anxiety-inducing for many people. You’re doing the right thing by not bottling it up. Please be kind to yourself in this space - the fact you’re asking questions, reaching out, and preparing for your appointment shows how seriously you’re taking this.
You’ve got a whole community here that understands how overwhelming this all can feel in the beginning - and many of our users are living proof that, while a diagnosis is a big shift, it doesn’t mean you can’t still enjoy life and stay healthy.
Please let us know how you get on next week if you feel up to it and ask anything that comes up between now and then. You're not alone in this :star:
 
Hi, @Ade_essex and welcome. I understand where you are as I was also diagnosed with an HbA1c over 100, as many others have been, but 5 months later I was actually back in normal range as a result of lifestyle changes - losing weight, adopting a low carb diet, becoming more active - and (for a while) medication. Others have done the same.
 
Ade_essex what a good thing you have been proactive asking for a medical. I relied on an annual blood test as I have high blood pressure and was never seen by a doctor, I was called in last June as my cholestral had crept up. I knew I was overweight and peeing more so was shocked to discover my blood sample hadn't been tested for diabetes. I asked for a test and was 69 four weeks later having changed my diet and moved more it was 64. I didn't join here until after my uninspiring DN appointment. I wish I had joined in June. I have since discovered I had an hba1c in 2014 and was 40 but am angry they didn't tell me nor did they test again plus I am not now entitled to a medical as I am diabetic.
If you are overweight or have belly fat losing weight would be good. The nhs site has a bmi calculator. They suggest a lower bmi for a person who has East Asian heritage is better ( other ethnicities included) the waist test suggested your waist should be no more than half your height. I had crept into the obese category 32. I effectively went low carb by cutting out sweet and stodge and realised I was losing weight. I found a site by a New Forest practice which has an excellent section on diabetes including bottom left links to various websites about low carb diets. I was eating 80 to 120 a day. I have upped it a bit because of medication. Carbs convert to sugar so reduce or replace pasta rice potatoes and bread. If you are adding sugar to drinks reduce or use sweetners.
The good thing is you are hopefully less stressed and more active both of which will be good for your health including blood glucose. I was shocked when I was diagnosed it was like a bereavement but the fact I lost weight was a happy result. Do as much or as little as feels right. Whatever the cause you and your doctor will want to reduce your blood glucose gradually so as not to shock your body too much. You may find eyesight changes as your blood glucose changes.
If you want to read one thing try the Freshwell site/app. Keep asking questions

newforestpcn.co.uk

Diabetes & Metabolic Health | New Forest PCN

newforestpcn.co.uk newforestpcn.co.uk
 
Hi @Ade_essex welcome to the forum and as Martin.A says, lots of us on here have been in the same situation re: the high HbA1c number and are managing the situation successfully to the point where the level has come down to much lower levels.
Like you I did not really feel that I had felt any symptoms of Diabetes but looking back over the past couple of year, I realised I had bouts of being thirsty, getting up in the night for a pee and a couple of other symptoms all of which had gone away. When I met my diabetes nurse for the first time she also told me that diabetes is not a sudden event but one one where the susceptibility and slow development of the illness can take place over years if not decades. I decided early on not to worry about the how and to focus more on the what in terms of the changes I could make to improve my lifestyle, reduce the risks factors and things I needed to do to get the condition under control.
I read a lot about condition on this forum, the Diabetes UK website, the NHS pages on the condition and used that to create a list of questions that I could ask at the appointment. Themes you may want to think about are:
  • Remission: process, requirements, support
  • Medication: is it required, what is necessary to reduce it or even come off it
  • Diet: recommendations around food, use of low carb diets, foods to eat and others to avoid
  • Exercise: how much extra compared to current level, regularity, barriers (pain, dodgy knee joints) etc.
  • Monitoring: should you, when and how, agreeing ranges and perhaps setting targets.
I would also recommend coming back here after the appointment and seeing what others have done to bring their HbA1c down and using the wisdom of the many knowledgeable individuals on the forum to work out your own plan of action.
 
Hi @Ade_essex well done on finding this great forum and before officially being diagnosed as diabetic which it looks like you are, I’m wondering is that’s a forum first ?

I hope you find useful information, to enable you to make the necessary changes, once you’ve spoken to your GP and know more

as others have already said it’s not unusual to find our Hba1c is extremely high on diagnosis, I was another who was way over 100, but now finally under good control thanks to what I learned on here (plus some help from HCP’s and for me quite a bit of medication)

think someone has mentioned you can expect possibly the recently done blood test berepeated, possibly referred to a Diabetic Specialist Nurse / enrolled on a free healthy eating information advice (with others in a simular situation)

I would say write down those questions that will be going through your head so when you speak to someone you can be re-assured and get / remember the answers, and don’t feel overwhelmed or stressed

One thing that has helped many Diabetics is the freshwell healthy eating website / app
have a look here
lowcarbfreshwell.com

Freshwell Low Carb Project - Home

lowcarbfreshwell.com lowcarbfreshwell.com

Remember this forum is always here, you will find people happy to share to help others
 
With an HbA1C as high as it is you will almost certainly be prescribed medication, the first line one is metformin which helps your body use the insulin it produces more effectively and reduces the output of glucose by the liver and that for many along side significant dietary changes will be sufficient to bring down your HbA1C over a few months. It is not an instant fix and in actual fact it is better to reduce blood glucose gradually as your body need to adjust from running high levels which has become the norm and too rapid reduction can lead to issues with your eyes and nerves.
The Freshwell approach works for many and still gives plenty of options for tasty filling meals. It is based on a suggested no more than 130g carbs not just sugar per day which is better divided between meals and drinks and snacks.
It becomes second nature to look at the nutritional information for the carbohydrate content of foods and assess how that fits with your chosen approach.
The book or app Carbs and Cals is useful for giving carb values for different portion sizes of a whole range of foods.
One thing that is important is not just what you eat but how much, having less of the high carb foods and more protein, healthy fats and vegetables and salads and fruit like berries.
Hopefully you will get useful feedback from your appointment but some GPs don't appreciate how much can be achieved by dietary changes.
 
Thanks so much everyone for the kind words and great advice. Actually, I did wonder whether this would be a forum first; outing myself as a pre-diagnosed diabetic as an opening post. But my HbA1c is so high I don’t think there is any doubt so there doesn’t seem any benefit in being coy on here.

The three things I think I can take from the advice are these. Firstly, own your current situation. Don’t look back but take charge of your diet and health from today. I have actually been making some changes since last weekend. I’ve dropped wheat flour, rice and potatoes almost completely from my diet replacing them with more veg and an occasional slice of rye bread. Cutting (highly) refined carbs is technically quite simple for me seeing as they made up a big part of my diet. But not everything that’s simple is necessarily easy so I don’t imagine that this will be plain sailing all the way.

Secondly, take all the advice I can do from the kind folks here and the health care professionals in my area. My only real experience with diabetes is my mum, who largely stuck her head in the sand with hers, and a friend who lost a leg due to ignoring advice. I don’t want to repeat what they did.

And thirdly, for all the advice that’s out there, I’m the one who’s in charge of what I stick in my gob and whether I get up off the couch and move about. I didn’t work for 40 years just to succumb to something like this when I retire so I’m totally committed to doing what I can to put this thing into remission. I don’t particularly like the idea of medication, especially not long-term, but I need to accept that I may need to take it to get better. So I’ll read up on metformin over the next few days.

Once again, thanks so much for taking the time to welcome me. I’ll let you know what happens at Tuesday’s appointment.

Ade
 
Hi @Ade_essex and welcome to the forum. You have already received loads of excellent advice from people so I won't add any.
Like you my HbA1c at diagnosis was well over a hundred. I did have symptoms but attributed them wrongly to other stuff. Joining the forum a few months after diagnosis was without doubt one of my best decisions. The information, support and advice is great and helped so much in those early confusing days.
Hope your follow up appointment goes well and your HCP and you agree a good management plan going forward.
 
Hi and welcome. All good advice above, so i'll not repeat it.
There are so many people on here who have such a vast knowledge of living with diabetes, in all its forms, so no question is stupid, don't be afraid to ask, and keep us informed with your progress.
As an aside, I was well over 100 when I was diagnosed, but am now back in the "normal" range.
So it can be done and you sound like you've already got a handle on this, so wishing you all the best.
 
Ade - you sound like you have exactly the right outlook - no point anguishing over things you did or didn't do in the past cos you can't change that now - but instead concentrate on how to go on from now on. Excellent!

However - a word of warning, if I may (well I'm going to say it anyway whether you permit me or not :rofl: ) Do please please be careful in reducing your intake of carbohydrate to violently because unfortunately when your body has been accustomed to shedloads of carb therefore glucose being instantly available to it constantly, when that suddenly ceases, the delicate bits of the body such as nerve endings and thin little, but essential, veins can sustain damage and make that known to us. The nerve damage (neuropathy) hurts like hell and the main place vein damage becomes noticeable is in the back of the eyes (retinopathy) which is caused by those vend leaking blood into the back of the eye and not necessarily painful, and only picked up when we have our annual retinopathy screening. If minor enough this may not need any actual treatment but if it does - injections straight into the eye - oh heck.

So assuming GP says yep you have diabetes on Tuesday, he should also tell you he's referred you to your local retinopathy service for your first screening and that you need to have your your pulses checked in your ankles to make sure they are optimal and to make sure you haven't already got any nerve damage. Usually, one of the nurses at GP surgeries does these latter checks, along with height, weight and BP. The retinopathy screening is done by a separate body so you'd normally hear from them via the post - but usually available within a short time. If an appt is not forthcoming soon - chase it!

Good luck !
 
Ade_essex said:
... my HbA1c is so high I don’t think there is any doubt ... I’ve dropped wheat flour, rice and potatoes almost completely from my diet replacing them with more veg and an occasional slice of rye bread. ... I’m totally committed to doing what I can to put this thing into remission ...

I don’t particularly like the idea of medication, especially not long-term, but I need to accept that I may need to take it to get better. So I’ll read up on metformin over the next few days.
Click to expand...

diabetes-prediabetes-normal-scale.jpg
@Ade_essex
A couple more thoughts about being better informed for your appointment.

BLOOD GLUCOSE
Your level, like mine at diagnosis, had the needle pointing to the high red danger zone. It may already now be in the lower red zone, thanks to cutting out those carbs you mention.

If you don't already have one, I'd suggest getting a finger prick tester to find out what your current fasting level is (FBG in mmol/L). With luck you will then be equipped to tell your GP/DN that you are to aiming to achieve remission by diet and exercise alone, and your aim is to be in the pre-diabetic zone within three months and the normal zone in six months.

Please ask if you need to understand the difference between HbA1c (3 month average level indicator) and FBG (current level).

WEIGHT
You have probably gathered the typical progression from normal (young and slim) to T2D (older and wearing larger size jeans) occurs over decades with many years spent in the prediabetic zone.

During that time insulin develops, visceral fat accumulates in the liver and pancreas, and capacity to produce insulin falls to about 50% of what it once was.

Lose weight (up to 15 kg or more) and if you are a 'responder' most of the beta cells in your pancreas will be functioning normally again. When that happens the needle above will be pointing to the green zone.

ARE YOU A RESPONDER?
Go on to a strict 800 calorie diet for a week or two to find out if you are a 'responder'.
As you may know, this what will happen to your FBG if you are:

Counterpoint_FBG_levels.jpg

Medication will never achieve such a result. If you do, there may be no point in starting to tae Metformin. Just carry on with a healthy weight loss diet instead. The Newcastle Diet is what I followed to lower my FBG to 5.8 mmol/l in 7 days. The Fast 800 8-week is another possibiity.

Other weight loss diets you might consider for the long run are: Dr David Unwin's (diet sheet), Dr Kim Andrews' (meal planner and food lists) and the Harcombe Diet ('What should we eat?' article).

Obviously you should discuss all this with your GP/DN first.
 
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JITR said:
View attachment 35213
Click to expand...

P.S. This chart came from Nicola Guess's substack 'What is Prediabetes'. She is now the programme director of the New Dawn project at Oxford, sponsored by Diabetes UK, and worth listening to.

For instance this podcast (link below_ with Dr Chana Davis a similarly well qualified interviewer. Dr Guess emphasises the importance of weight loss and how little is known about the pancreatic beta cells during prediabetes. However thanks to Prof Taylor's work, and the experience of many members of this forum, we know prediabetes (i.e. fatty liver) can often be reversed and T2D put into remission, with HbAic returning to normal levels (<39 mmol/mol) or the lower reaches of the prediabetic zone:

Type 2 Diabetes Pt 2: Diet & Disease Prevention ​

 
Hello all. Thanks again for the ongoing support and advice. Ok, so I saw the doctor this morning, armed with the @Ieva DUK question set and this is where I am now.

Diagnosis. Yes, I’m definitely diabetic. Type 1 can be pretty much ruled out as no typical indicators (fainting, hypos) so the diagnosis is type 2. I had my original blood test fasting, because the form said to do that, so the doctor thinks my true HbA1C could actually be even higher than 101. A second blood test has been arranged for two weeks time.

Outcomes. Not dying I guess. But more specifically, get my HbA1C down to the 40s as quickly as possible. In this case, the doctor says the desired outcome and the metrics are the same thing.

Strategy. Medication and weight loss. I’ve been prescribed Metformin to control the blood glucose, just as @Leadinglights thought I might. So that was well within my range of expectations. The curveball, though, was that I’ve also been prescribed statins to control my cholesterol. 20mg of Atorvastatin to be precise. I wasn’t expecting that! So in a week I’ve gone from being a working 59 year old who walks a fair bit and works out regularly to an old geezer on diabetes and cholesterol meds who gets free age related prescriptions. Blimey I feel old right now!

The doctor was in two minds as far as weight loss was concerned. On the one hand, she thought I might benefit from meal replacement drinks (The Pathway?) but on the other to wait and see what my dietary changes and the metformin yield. I also haven’t been referred to a diabetes specialist yet; still waiting for the second blood test. However, I was assured that I wouldn’t just be abandoned to the meds and nothing else so let’s see what that produces.

Ongoing testing. I asked about retinopathy and hand/feet tests. Again, these will probably be arranged after these next blood tests but not to worry too much right now. My wife, who’s an optician, has pulled my last few eye test results and can’t find anything worrying in there (blurred vision, rapid changes in eyesight) so I’m a little less concerned about that. The only thing I didn’t ask about was regular self-testing (and I’m kicking myself because I wrote it down too). Do folks on here with type 2 tend to test their own blood glucose? Is there a recommended device or testing regime? Clearly, I’m very new to all this.

So that’s how it all went. Pretty much as the forum hive mind suggested except with the statins thrown in to stop me getting complacent. None of this came as a surprise but I couldn’t help looking up to the heavens when I got out and think “thanks a lot, mate”. Don’t get me wrong, I’m not given to getting emotional about this sort of thing but I could really have done without it. As could we all, I guess. So that’s me.
 
Type 1 can be pretty much ruled out as no typical indicators (fainting, hypos) so the diagnosis is type 2. I had my original blood test fasting, because the form said to do that, so the doctor thinks my true HbA1C could actually be even higher than 101. A second blood test has been arranged for two weeks time.

The symptoms of Type 1 are extreme thirst and urination, tiredness and weight loss. Hypos aren’t a symptom as those are usually a result of insulin injections - ie happen when you’ve been diagnosed. Pre-diagnosis, people with Type 1 usually have very high blood sugar.

The HbA1C gives an idea of your blood sugar over the proceeding 3 months so it won’t have made any difference whether you fasted that morning or not. Both those things were a bit strange for the doctor to say.
 
Ade_essex said:
Type 1 can be pretty much ruled out as no typical indicators (fainting, hypos) so the diagnosis is type 2.
Click to expand...
Your doctor does not appear to know much about Type 1 diabetes.
Type 1 is an autoimmune condition whereby our bodies kill off insulin producing cells.
In the absence of insulin, blood glucose levels rise.
Hypos are low blood glucose levels which can only be "achieved" by people with Type1 if they inject too much insulin.
If blood glucose levels get too high due to lack of insulin, we may experience Diabetic Ketoacidosis (DKA). Luckily, I have not experienced this but there are some very nasty symptoms before you get to fainting.

I am not suggesting you have Type 1 but if you find you are loosing more weight than you expect, your type 2 diagnosis maybe incorrect and you are at risk of becoming very unwell with DKA.
 
Thanks both @Inka and @helli. Ok, I’m not going to go overboard here but is it worthwhile going back to definitely rule out type 1 before I go very much further? I don’t have any of the symptoms mentioned above but could type 1 still be potentially a risk?

On the blood test, I knew that the HbA1c was a rolling average type of test but didn’t challenge the doctor who seemed worried that I erroneously took the test after fasting. (Except that I did exactly what the form said to do). But I’m still booked in for a blood test in two weeks time. That should still be ok, shouldn’t it?
 
Whether the test was fasting of not is unlikely to make much difference to the result and at the level you are the sooner you get going on the dietary changes the better but a word of caution is to reduce carbs slowly over a period of a few weeks, managing your glucose level is a marathon not a sprint to minimise issues with eyes and nerves.
It is not uncommon to be prescribed a statin as a diabetes diagnosis puts you in a higher risk category where they like the cholesterol to be below 4. What was your result?
Many do find lowering carbs naturally lowers cholesterol anyway.
A look at this link should give you some ideas for modifying your diet if you haven't already seen it. https://lowcarbfreshwell.com/
If your combination of meds and diet do not prove effective then there are tests which can be done to help diagnose if you are Type 1.
 
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