Confused, worried and let down

[Ali**1]

Hi, I got my diagnosis a week ago. But apparently I should have been told back in 2019 that I hade type 2 diabetes. I’ve gone 5 years without treatment!
I was given a booklet to read which I was told would explain what I could and couldn’t eat but unfortunately it’s of little use as it’s geared for someone cooking an Asian diet not a standard English one.
I have no idea what I’m supposed to be doing/eating or anything and feel that I’ve just been thrown out with the trash!

 

[harbottle]

Hi, I got my diagnosis a week ago. But apparently I should have been told back in 2019 that I hade type 2 diabetes. I’ve gone 5 years without treatment!
I was given a booklet to read which I was told would explain what I could and couldn’t eat but unfortunately it’s of little use as it’s geared for someone cooking an Asian diet not a standard English one.
I have no idea what I’m supposed to be doing/eating or anything and feel that I’ve just been thrown out with the trash!

That appalling! It may have worsened over that time as well.
What is your hba1c?

I used the Caldesi cookbooks to get ideas for recipes - meat/fish and vegetables, mainly. The author has T2 diabetes in remission.

When we have a roast, I replace the potatoes with extra vegetables (But might have one or two small ones as well.)

 

[Ali**1]

That appalling! It may have worsened over that time as well.
What is your hba1c?

I used the Caldesi cookbooks to get ideas for recipes - meat/fish and vegetables, mainly. The author has T2 diabetes in remission.

When we have a roast, I replace the potatoes with extra vegetables (But might have one or two small ones as well.)

I was at 77 when tested in December but I had no idea what the blood test was for. I just got a text message asking me to come in for a blood test. Neither the receptionist or nurse were able to tell me at the time what the blood test was for. Then had appointment last week and told I was diabetic and had been since 2019!

 

[pjgtech]

Hi and welcome, sorry to hear you've not been supported. Maybe go back to your GP and ask if they have a specialist diabetes nurse, some do.
There is also lots of good info, including recipes on here *diabetes uk website), check out the learning zone top of the page.
If you can share a few more details, you will get more suitable advice, eg: are you on any medication, what was your last HbA1c level, if you have any other significant health issues, if you need to lose weight, how much exercise you do and what sort of things you currently eat.
General advice is to reduce carbs, thats all carbs, not just sugar, so bread, pasta, rice, cake, starchy veg, eg: potato, sweets, crisps, biscuits, alcohol, etc.
Also worth checking out a couple of other websites for recipe / food ideas:
Lowcarbfreshwell website.
Sugarfreelondoner website.
Plus lots of good recipe idea on here too.
Please keep us updated and let us know how you get on.
Cheers

 

[pjgtech]

If you have a smart phone or pc/laptop you can download the NHS patient access app or access the patient access website, which most GP's link to (though not all) and it will show you any recent test results, including blood tests, and what the levels tested were, including HbA1c levels, cholesterol, etc. Cheers

 

[Mom of Type 1]

The 20 minutes walk after meal helps me a lot in lowering the glucose level. Try that.

 

[Proud to be erratic]

Hello @Ali**1, yes as others have said it is pretty poor that your diagnosis was identified in 2019 and you slipped through the (poor) safety net until now.

An Hba1c of 77 is sufficiently above the diagnosis threshold of >48 that you shouldn't ignore it - but you've reached out to this Forum, so I believe you've found a good place to get reassurance, general advice and ideas for a sensible, structured way to move forward (and downward!). If you are able to look back into your on-line medical notes to find out what your HbA1c was in 2019 (or just ask your Surgery) that might help you by seeing what the progression has been in the last 5+ years.

You are already getting useful responses; 77 is high but not outrageously so. Don't panic, there are plenty of people here who have arrived with an HbA1c in 3 figures and who have successfully regained respectable HbA1c results. Also don't overreact: modest steady changes are much better for you than sweeping changes; whatever you do change needs to be manageable and sustainable in the future. A great place to start is the Learning zone, which you'll find from the drop down menu at the top left of this page. Good luck.

 

[Leadinglights]

I was at 77 when tested in December but I had no idea what the blood test was for. I just got a text message asking me to come in for a blood test. Neither the receptionist or nurse were able to tell me at the time what the blood test was for. Then had appointment last week and told I was diabetic and had been since 2019!

That would be the result of the HbA1C test and the threshold for diagnosis is anything over 47mmol/mol so yours being 77 is a fair way into the zone, so I would expect that you will be offered medication to help with the dietary changes you will need to make. Many people have brought it back from higher levels than you by making those changes.
As mentioned the Freshwell approach has been successful for many, this is the link https://lowcarbfreshwell.com/
There are several meal plans to give you some ideas or you can just do your own thing following the principals. It is a low carb regime which is based on the suggested no more than 130g carbs not just sugar per day as a good starting point./

 

[mashedupmatt]

Hi @Ali**1 and welcome tto the forum - sorry to hear of your poor experience with your healthcare team - feel free to ask any questions you may have - we're all here to support each other

 

[Inka]

Hi, I got my diagnosis a week ago. But apparently I should have been told back in 2019 that I hade type 2 diabetes. I’ve gone 5 years without treatment!
I was given a booklet to read which I was told would explain what I could and couldn’t eat but unfortunately it’s of little use as it’s geared for someone cooking an Asian diet not a standard English one.
I have no idea what I’m supposed to be doing/eating or anything and feel that I’ve just been thrown out with the trash!

Start with the orange Learning Zone at the top of this page @Ali**1 Then have a look through the Meal plans and Recipes:

Recipe finder - Enjoy Food | Diabetes UK

www.diabetes.org.uk

Meal plans and diabetes

Eating nutritious, healthy and downright delicious food is that bit easier with our meal planners. We've created multiple different weekly meal plans to suit all types and tastes. They're nutritionally balanced, are calorie and carb counted, and can help if you want to lose weight. They also...

www.diabetes.org.uk

If you can give us an idea of an average’s day’s food for you, you’ll get suggestions about ways to tweak your meals. Basically, you’re looking at reducing carbs (all carbs not just sweets ones, do rice, breads, cakes, biscuits, flour, etc) and increasing non-carby veg, especially green veg, so spinach, broccoli, cabbage, etc.

 

[Maz2]

Goodness me I am appalled. Diabetic for 5 years and no-one told you!!!!

I was pre-diabetic, back to normal for 6 years, but unfortunately back to 42 again. When it first happened to me I had a test and three days later had a letter from the surgery asking me to go and see a GP about the results. I was then told I was pre-diabetic, could I try to get this down and was sent on a diabetes prevention course.

People do make mistakes unfortunately and things get overlooked. I know they shouldn't but they do. However, telling someone 5 years later is awful.

 

[JITR]

I like food lists as a quick and easy starting point.

Examples:
Freshwell includes a simple meal planner
Real Meal Revolution with sample recipes, and its Cookbooks

Broad guidelines:
Meal: = 1/3 plate protein + 2/3 veg (weight loss) - 1/3 protein + 1/3 veg + 1/3 complex carbs (maintenance)
Protein: g/day = 1.2-1.4 x bodyweight on kg (e.g.72-84 g/day if 80 kg)
Carbs: g/day = 50 (weight loss) - 130 (maintenance)
Healthy fat: = as it comes.

 

[Drummer]

Hi, I got my diagnosis a week ago. But apparently I should have been told back in 2019 that I hade type 2 diabetes. I’ve gone 5 years without treatment!
I was given a booklet to read which I was told would explain what I could and couldn’t eat but unfortunately it’s of little use as it’s geared for someone cooking an Asian diet not a standard English one.
I have no idea what I’m supposed to be doing/eating or anything and feel that I’ve just been thrown out with the trash!

First DON'T PANIC.
Many people arrived here with higher HbA1c levels and I know that I had a flagged test result 10 years before diagnosis, but the GP simply cancelled that test for subsequent years.
A good way to start off correcting things is to evaluate your carbohydrate intake, the sugars and starches, and see if a few changes could bring down the daily total. For an ordinary type 2 that can be enough to turn things around.

 

[Ieva DUK]

Hi @Ali**1 and welcome to the forum!

I am so sorry you've had to join us, especially under such circumstances, but please know you're amongst people that understand. I won't repeat what others have said in terms of food and where to start but please be kind to yourself and take it a day at a time. All the information can quickly become overwhelming - numbers, counting, food labels etc. Just look at your usual routine and see where you can make changes - that's a great place to start. As others have mentioned - the changes need to be sustainable, something that becomes your 'new norm' and doesn't feel like you're punishing yourself. It's impossible to always get it right, but take care of yourself and any questions, worries, rants or victories - whatever it might be, do reach out or post here on the forum. That's what we're here for

 

[Alan44]

Hi @Ali**1 and welcome to the forum.

Not the best start to being told you are diabetic, but these things happen, they shouldn't, but alas they do and in that respect you are not alone.

So moving forward, you have had some good advice and links on diet and what you can and maybe shouldn't eat, which is important, also just as important is weight and exercise.

If you are overweight, try to lose say 2lb per week and get your BMI to below 25 (see NHS BMI calculator and guidelines)

Exercise, this will depend on your physical capabilities, but 20 mins per day, just enough to get the heart beating a little.

Combine the Diet, weight and exercise will all help to reduce your hba1c

We have had some great success stories on the forum and we have members with many, many combined years of living with diabetes and even putting it into remission.

I guess you will be offered medication and have another blood test in 3 months time ?

Please ask any and as many questions you wish

Alan 😉

 

[Leadinglights]

As much as it shouldn't have happened and has done with quite a few people who have posted but it is better not to get distracted from moving forward by dwelling on what has happened in the past..
There are people who have tests and don't follow up with their GP and actually ask for the results and because they don't hear anything they assume all is OK which is a different situation from being told everything is fine when it is not.

 

[Drummer]

As much as it shouldn't have happened and has done with quite a few people who have posted but it is better not to get distracted from moving forward by dwelling on what has happened in the past..
There are people who have tests and don't follow up with their GP and actually ask for the results and because they don't hear anything they assume all is OK which is a different situation from being told everything is fine when it is not.

My local surgery seems to think that patents asking for the actual results of their tests is an insult to their integrity.
Results are not available online, requests are met with a professional expression and 'just fine' 'adequate' 'no further action' - these days I take a clipboard and smile back 'I just need the numbers in order to keep my files up to date, thank you.'
I used to work in the Civil Service.....

 

[Mark72]

Hi Ali, welcome to the forum.

Try not to worry too much! My background's pretty similar to yours, I had a blood test for something else back in 2012 that showed elevated blood sugar and should have been called back in but wasn't. We moved house and the new doctors didn't pick it up, we moved again and I finally swapped GPs about 6 years later and they called me in right away for tests so being diagnosed in June 2024 was 12 years delayed. My HbA1c was 96 and my instantaneous was 17.9.

Everyone's different but I had the normal round of eye tests, foot tests and a blood test for kidney function, eyes have mild background retinopathy but HCPs left me on 12 monthly appointments so not concerned, very slight numbness in some toes but still good feeling in my feet and normal kidney function. None of it a major concern though it did provide really good motivation for weight loss and improving my diet! Hopefully despite your delayed diagnosis you'll be in an even better place and you can concentrate on managing you diabetes.

My best tip would be make all the changes to diet and exercise you can but take them all in and work out what you can and can't keep up long term. I went nuts and cut out everything for the first couple of weeks but found living on Ryvita and cucumber wasn't sustainable!

 

[LieB]

Hello Ali and welcome to the forum. I am sorry you had such an awful experience with your GP - if it helps, when i was diagnosed (hba1c of 84) at my foot check the nurse just examined one foot and couldn't be bothered to do the other because she wanted to eat lunch. I have never had a face to face with my GP (diagnosed by sms at a conference etc).

My personal experience, with Diabetes for the last 7 months (which is a happy story by the end as i am now in remission with a hba1c in the mid 30’s without ever taking meds) is that you are your own best friend. Sponge information from the forum, if you can afford to self funding a CGM - they are wonderful in helping you build personal data on how changes to your lifestyle affect your blood sugar levels.

All these ‘don’t eat more than x’ are just a baseline, i personally found them to often do more harm then good because nobody is the same and we will all respond differently. As changes in your exercise levels (duration and intensity), stress management, incremental activity and off course diet, will all change those thresholds for you - and a CGM can help you there just be wary it can cause some to become neurotic to it.

I wish you well on your journey - you are not alone and asking for help/reaching out is the best first step.

 

[everydayupsanddowns]

How are you getting on @Ali**1 ? 🙂