Newly diagnosed Pre-diabetic but with Diabetes Symptoms

[eddye88]

Hi Everyone,

I'm struggling with a new diagnosis and what feels like a lack of support, please see some details below and I guess, my pressing questions after that.

General Health
My diet has been mainly pretty good for a long time, almost everything cooked from scratch, complex carbs only but with the occasional takeaway/meal out or an ice cream as desert some times.

I don't smoke and average probably 1 alcoholic drinks a month at most (2 Guinness and a Bailey's this year).

I'm 6ft5, 85KG (22 BMI), I get my 10k steps very consistently, do kettlebells 3x a week for 30 mins so overall thought I was pretty healthy. My doctor, despite the BMI, describes me as 'extremely skinny'.


Pre-Diabetes
Maybe 3 weeks ago, I had a large portion of normal pasta and quite a lot of chocolate at a friend's - then I woke up the next day with burning pain in both my legs that passed after about 3 days.

I'd been having blood tests/CT scans etc because of night sweats/weight loss already and when I went to my GP about the leg pain, they saw that since November my HbA1c has risen from 38 to 43 meaning I am now pre-diabetic.

Any time I've had simple carbs or alcohol since that evening (which is only twice), the pain has been wild and kept me up through the night etc. and it also seems to have spread into my left arm. I got myself a libre 2 out of curiosity and the pain seems consistent with a higher level.



Q1: Is it possible to have neuropathic pain and other classic diabetes symptoms whilst in the Pre-Diabetes range?
It seems really obvious that's what's happening but my GP says it's not possible


Q2: is it possible to get Diabetes medication whilst in the pre-diabetic range? If not on NHS, does anyone know about private healthcare?


Q3: My GP looked at a food diary I made and my average level on the monitor (6.9mm,1% out of range) and said I'm very healthy and I don't need to change anything - is that normal? X
I went back after the pains spread to my arm last week and I'm now signed up for 'The NHS Diabetes Prevention Program' and been given a prescription for voltarol.


I am feeling very concerned and scared to be honest - to me, it seems I am at the stage of being diabetic in terms of symptoms and response to carbs, yet I'm being forced into not managing it properly due to my HbA1c not being high-enough.

Maybe I'm being ridiculous but I keep thinking about what if nothing gets done and then suddenly we're looking at an amputation!


Any answers to the questions above, support on what I could be doing or even just kind words would be massively appreciated at this pretty worrying time,

Thank You,
Ed

 

[KennyA]

Hi and welcome


I had much the same experience. The thing is, there really isn't anything called "pre-diabetes". That category had to be invented because there was general international agreement around 2010 that Type 2 diabetes would "automatically" be diagnosed once an HbA1c level of 48 or above was reached. That was intended to standardise what "Type 2" was seen as internationally.

This did not rule out the possibility of diagnosing Type 2 earlier, but in practice, in the UK, no-one will make the diagnosis until that level is reached. Normal blood glucose (see the graph) is somewhere around 38mmol/mol, give or take 3 or so either way, and just about everyone who isn't diabetic is in there. So "pre-diabetes" is just the period between your blood glucose becoming abnormal and the point where the system will recognise officially that there's a problem. In the UK it's compounded by GP activity payments being linked to the 48 level, rather than to how the patient is feeling (etc).


One thing I will say is that it really doesn't matter what you were or were not eating or doing. You've now got the problem. You didn't cause it.

I had a continual series of odd symptoms starting around 2009 - feet swelling, then weight gain, stabbing and burning pains in my feet, bleeding that wouldn't stop, apnoea, night sweats, and a lot more. I went along to the GP, who did very little. I'd done my googling and thought I might be diabetic. I was firmly assured several times that I wasn't diabetic, as my blood glucose wasn't high enough (although no-one mentioned it was not in normal range). This wasn't very reassuring.

I think the foot neruropathy (for example) started when my BG was about 43 or 44. There is nothing in the medical literature (Bilous and Donnelly Handbook of Diabetes) that says that symptoms only start above 48 - actually the opposite. Serious symptoms (eg retinopathy) are described as "rare" below the 48 level, which recognises they occur below that level.

Roll forward ten years to 2019 and my BG had eventually risen to the point where I was suddenly told that in fact I was diabetic, (HbA1cs of 50 and 49) and that all the symptoms I had were in fact diabetic symptoms. I've never taken any diabetic medication, as I was aware (from this forum mainly) that a low carb approach would work to reduce BG. So that's what I did, going for a maximum of 20-25g carb/dayand my BG was normal (at 36) within four months by April 2020. The symptoms went as well as my BG normalised, though I do have some permanent damage thanks to the years of elevated blood glucose.

In the years since I've lost all the weight I gained and am feeling pretty good - for example, I've returned to active sports 3 or 4 times a week.

So - to answer your questions:

Q1- yes, of course it's possible. I'm not the only person on these forums to have had this experience.

Q2- because the system doesn't recognise you as having diabetes, it might be harder to get someone to prescribe diabetes medications. However, you might well not require any medication to lower your blood glucose. Lowering your carbohydrate intake could achieve that on its own.

Q3 - averages can be misleading. If you are tied to the idea that diabetes is a particular level of blood glucose, you might not add up what the patient in front of you is saying. By definition, your blood glucose, as mine was, is abnormally high. Some of us cannot cope with even mildly elevated BGs.

Best of luck. I had better advice and support from people on this forum than I got from the NHS. Please ask as many questions as you like - the decisions are yours to make and you should get as much information as possible.

 

[Melgar]

Hi and welcome to the forum @eddye88. Sorry you are going through all this. It's always a shock when you get told you are prediabetic, it comes out of the blue. If it helps I too am thin. I'm no where near as tall as you I'm 5'6 , BMI 19. I'm fit too, and I was back then.
If I cut back on my carbs my weight drops off. I went on a very low carb diet a couple of years back. All that happened was I lost lots of weight I couldn't afford to lose. I looked dreadful and ill, gaunt even. If you were overweight then you have the option of losing weight, which could possibly drop you back into the normal range.

I see your blood sugars are ticking upwards. Is your Dr running tests on those symptoms? In general you only get symptoms if your blood sugars are elevated for some time, but its not a cliff edge, some people get diabetic symptoms at lower levels especially if they have been running with elevated blood sugars for some time.

In general, the UK, I believe, only puts you on blood lowering meds when you are in the diabetic range. They will talk about diet and lifestyle changes. That means looking at your diet, if it's heavy in carbs then you can afford to drop your carb intake. Exercise, just moving is better than sitting at a desk.

Do you have a glucometer? Something to measure your blood sugars. If you do not have one I suggest you purchase one. You will want to test your bloods just before a meal, and then 2 hours after. If the second reading is 2 mmol/Ls higher than the first it means your body has had too many carbs and your body has been unable to utilize those carbs effectively and the sugars are in your blood stream. Keep a log of what you have eaten and your blood sugar readings.

Most people can lower their blood sugars with diet and exercise.
Take a look at some of the low carb forums here for food ideas. Just keep an eye on your blood sugar readings. If after reducing your carbs and they still keep going up then contact your Dr again.

ed spelling

 

[eddye88]

Thank You @KennyA and @Melgar.


Kenny, it is really interesting I hear your experience of not being classified as diabetic but experiencing symptoms - I am very glad to at least be looking into things at this stage and be able to find support/advice here, especially in light of you saying you have found that more effective and beneficial then what's been offered medically.

I eat a very regimented diet and adding things up now, I'm hitting about 175g of complex carbs a day.

I am not ready to jump right into that Keto Zone - but I can very easily modify to get that down to sub 100g and see how I get on.

If it doesn't help as much as I'd like, hopefully moving to super low carb will be less of a shock to my system after doing that for a few weeks.



Melgar, I just finished my first 2 weeks with a Libre 2 and have a 2 pack coming on Tuesday - is that what you mean by glucose monitor?

What kind of tests do you mean by this please,
"Is your Dr running tests on those symptoms?"?

I believe my GP said I'd have another blood test in May for my HbA1c if that's what you mean?

Because of longterm back pain and my other symptoms, I've already had a lot of tests for more sinister things (MRI, X-rays, CT scan, full blood work etc) and my doctor was so focused on that stuff (rightly of course), that it was me that pointed out to them that I'd hit a 43 HbA1c and risen 5 in 3 months.


I don't want to lose weight so will use chat GPT to help with my diet - that's how I'd figured out the one have been doing anyways.


Thank you both so much,
Ed

 

[KennyA]

No problem. One of the things that surprised me post-diagnosis was how little knowledge there is about T2 in the health service. It's a relatively recently re-identified and defined condition: I have textbooks from 25 years ago that don't mention Type 2 at all - instead they talk about insulin-dependent diabetes mellitus and non-insulin-dependent diabetes mellitus.

I'd normalised my BG long before any significant weight loss. If you don't want to lose weight on a low carb regime, what worked for me to stop fat loss when I'd reached where I wanted to go was to increase the amount of fat in my diet. I found a liberally-buttered low carb bun daily did the trick.

Just so you know, there is a general prohibition against posting AI-generated material on this forum. This is because there is a requirement for forum posts to be based either on personal experience or authentic references.

 

[eddye88]

I'd normalised my BG long before any significant weight loss. If you don't want to lose weight on a low carb regime, what worked for me to stop fat loss when I'd reached where I wanted to go was to increase the amount of fat in my diet. I found a liberally-buttered low carb bun daily did the trick.

Just so you know, there is a general prohibition against posting AI-generated material on this forum. This is because there is a requirement for forum posts to be based either on personal experience or authentic references.

Thanks for the heads up.

I'm already scouting some changes and I get through alot of milk, so switching to full fat should up both the cals and the deliciousness

 

[MrsA2]

will use chat GPT to help with my diet

If that's been trained on what's on the Internet it will probably be full of the millions of contradictory, biased, extreme and sometimes downright harmful dietary opinions out there.

Trust it if your determined to, but personally I choose to use the real life, real people, real food, real experience on here based on those with the same condition as me/you. I've trusted this forum for 5 years, best resource out there.

 

[Melgar]

Melgar, I just finished my first 2 weeks with a Libre 2 and have a 2 pack coming on Tuesday - is that what you mean by glucose monitor?

No, a glucometer is a device you use to test your blood via a finger prick. You have the glucometer, a sprung lancet device and test strips. If you go to your local pharmacy / chemist you can purchase them there. I'm sure a staff member will show you how to use it. The meters are relatively cheap to purchase, it's the test strips that can cost. I use a Contour Next One. Most diabetics have one of these gadgets.

A Continuous Glucose Monitor is exactly that, it monitors your glucose levels continuously via the interstitial fluid. There are several makes, Abbotts Free Libre 2 which I use. My brother who is Type 1 uses is a Dexcom , both do the same thing.

What kind of tests do you mean by this please,
"Is your Dr running tests on those symptoms?"?

What I meant from that statement is not everything is down to diabetes. As diabetics we tend to think everything is related to our diabetes, but obviously it is not. Diabetes can be a distraction illness, meaning it could be something else. I will give you a personal example, my finger tips and toes were going numb and tingly. I thought it was related to my elevated blood sugars , but it transpires it was due to a medication I was taking which caused the numbness, it was a known vasoconstrictor.

My advice to you on diet is to look at the food discussion forums here. Members here have had success with diets. There are some great dietary suggestions, food recipes and discussions . And you can discuss the types of foods. They have been tried and tested by diabetics who have had great success with their food choices. To be honest the internet is full of dietary nonsense and misinformation.

 

[eddye88]

If that's been trained on what's on the Internet it will probably be full of the millions of contradictory, biased, extreme and sometimes downright harmful dietary opinions out there.

Trust it if your determined to, but personally I choose to use the real life, real people, real food, real experience on here based on those with the same condition as me/you. I've trusted this forum for 5 years, best resource out there.

Hi MrsA2,

Thank you for your thoughts.

I should clarify that I don't mean asking AI for advice on what I should eat as a pre-diabetic, my intention is to use this forum etc for guidance on that as you say.

But even when I find good options for breakfast, lunch and dinner, I find the process of building an actual meal plan out of those options that meets my calorie requirements (3000 cals/day maintenance) really overwhelming and stressful, which often forces me into information inaction.

So I will simply use this tool to put the options into a plan for me and confirm they meet my requirements.

I hope that makes sense.

 

[eddye88]

Melgar, I just finished my first 2 weeks with a Libre 2 and have a 2 pack coming on Tuesday - is that what you mean by glucose monitor?

No, a glucometer is a device you use to test your blood via a finger prick. You have the glucometer, a sprung lancet device and test strips. If you go to your local pharmacy / chemist you can purchase them there. I'm sure a staff member will show you how to use it. The meters are relatively cheap to purchase, it's the test strips that can cost. I use a Contour Next One. Most diabetics have one of these gadgets.

A Continuous Glucose Monitor is exactly that, it monitors your glucose levels continuously via the interstitial fluid. There are several makes, Abbotts Free Libre 2 which I use. My brother who is Type 1 uses is a Dexcom , both do the same thing.

What kind of tests do you mean by this please,
"Is your Dr running tests on those symptoms?"?

What I meant from that statement is not everything is down to diabetes. As diabetics we tend to think everything is related to our diabetes, but obviously it is not. Diabetes can be a distraction illness, meaning it could be something else. I will give you a personal example, my finger tips and toes were going numb and tingly. I thought it was related to my elevated blood sugars , but it transpires it was due to a medication I was taking which caused the numbness, it was a known vasoconstrictor.

My advice to you on diet is to look at the food discussion forums here. Members here have had success with diets. There are some great dietary suggestions, food recipes and discussions . And you can discuss the types of foods. They have been tried and tested by diabetics who have had great success with their food choices. To be honest the internet is full of dietary nonsense and misinformation.

Thank you, I will go to the pharmacy on my lunch break and see if I can get one - if they don't have one available, I'll Amazon one for tomorrow or something.

And yes, one of the things my GP and I spoke about last week is that whilst these symptoms have manifested at the same time, that doesn't necessarily mean they're caused by one thing eg. Diabetes, so I have some bloods booked for Thursday to continue to look at other potential causes.

Thanks

 

[MrsA2]

Hi MrsA2,

Thank you for your thoughts.

I should clarify that I don't mean asking AI for advice on what I should eat as a pre-diabetic, my intention is to use this forum etc for guidance on that as you say.

But even when I find good options for breakfast, lunch and dinner, I find the process of building an actual meal plan out of those options that meets my calorie requirements (3000 cals/day maintenance) really overwhelming and stressful, which often forces me into information inaction.

So I will simply use this tool to put the options into a plan for me and confirm they meet my requirements.

I hope that makes sense.

There are ready made apps that can help, even with built-in databases of off the shelf supermarket foods. Look at Carb Manager, Cronometer as just 2.

Most of us type s find calorie counting not as useful as carb counting, and therefore have a carb target rather than one based on calories.

Yes, it's all contrary to what we've been told for years, but it does seem to work for us, and our bodies.

I bet you'll be surprised to see what your meter tells you about your body's reactions to certain "healthy" foods and I look forward to reading how you're getting on.