Type 2 diabetes, 20 years and beyond!

[Welshnoshnoggins]

My name is Bill. I'm 75 years old. First diagnosed with type 2 in April 2002. Symptoms were that I had lost 2 stone in weight in as many months ! I went to Lewisham hospital (SE London) the two things that stand out, is the nurse saying.....we will put you on Metformin and you will feel as if you have been on holiday ! And the second, diabetes is not an exact science! Ain't that true. Anyhow, now I've been retired and moved of London after 36 years and now live in the west Midlands. I also suffer with ibs. That's all for now folks. Please keep those numbers down. Oh how I have tried.

 

[Vonny]

Hi Bill and welcome aboard! 🙂 Always good to have an "old hand" join us and help us relative newbies out. I was only diagnosed 2.5 years ago and am successfully managing my condition thanks to the help I've had from here 🙂

 

[Drummer]

Hmm - I was told to take Metformin and could have travelled by jet not even needing a plane to do so - that stuff tried to turn me inside out,
I threw it in the bin and found that I did not need to take it at all, nor the statin.
My diet is very strictly low carb, but luckily I feel fine and am still in remission after 5 years from diagnosis.
The situation at the moment, empty shelves and empty purses is making things difficult - I've got myself a mobility scooter to travel from shop to shop to find the essentials - I think the maximum in one trip was 5!!

 

[Welshnoshnoggins]

Hi Drummer. Nice to hear from you. I've come back to Diabetes UK, as I was a member many moons ago. Not doing so well with my numbers at the moment, so hoping for inspiration from all you guys.

 

[Leadinglights]

Ideas have changed over the years as to what is a suitable dietary regime to manage blood glucose level in people with Type 2 as it is more recognised that a low carbohydrate regime is successful in reducing blood glucose and losing weight if you need to so it maybe that you need to revisit your diet and make some changes by reducing your carbohydrate intake.
Some have gone down a low calorie or shakes based regime to give them a kick start in reducing levels but whatever you choose has to be enjoyable otherwise it will not be sustainable for the long term.
Have a look at this link for some ideas for modifying your diet, it is a low carb approach based on real food so may suit you. https://lowcarbfreshwell.co.uk/
What sort of blood glucose readings are you getting and what is your latest HbA1C as that will indicate how much work you need to do.
After all this time it is sometimes worth going back to basics and keeping a food diary of everything you eat and drink and estimate the amount of TOTAL carbohydrates not just 'sugar' as it is suggested that less than 130g per day is where people need to be.

 

[Docb]

Hi @Welshnoshnoggins and welcome to the forum. I'm same age, first diagnosed around the same time and have to work to keep my blood glucose down. Keeping the weight down, controlling carb intake, making sure I get some exercise in and taking some pills are my route and it is working tolerably well. Bathroom scales, blood glucose monitor and notebook and pen have been the kit instrumental in getting there.

By the way, there is no such thing as an exact science (at least I never found one after years of practice as a scientist).

 

[everydayupsanddowns]

Welcome to the forum @Welshnoshnoggins

Hope you find it helpful to compare notes with others here, even if just to offload about the frustrations and irritations of living with diabetes.

Fire away with any questions, and share as much or as little as you‘d like 🙂

 

[rebrascora]

Hi Bill and welcome from me too.

Curious to know if the nurse was right and you did feel like you had been on holiday after taking the Metformin because many of us would be rather unhappy about such a holiday! 🙄

Would you like to tell us a bit about your current diabetes management regime? Are you still just on Metformin or have things progressed on that front?
It sounds like your levels have perhaps been creeping up? Do you home test and if so, what sort of readings are you getting?
Did that dramatic weight loss settle down or reverse? Unexplained weight loss at diagnosis is more often associated with Type 1 diabetes rather than Type 2 so your mention of weight loss makes me wonder if you might actually be a misdiagnosed slow onset Type 1 and perhaps that is why you are now struggling to manage your levels?

If you can give us more information then it helps us to understand your situation better and make more appropriate comments.

 

[Welshnoshnoggins]

Welcome to the forum @Welshnoshnoggins

Hope you find it helpful to compare notes with others here, even if just to offload about the frustrations and irritations of living with diabetes.

Fire away with any questions, and share as much or as little as you‘d like 🙂

I've been a constant weight over past 20 years! Not over weight by any means. But I have a devil of a job controlling my blood sugars.

 

[Leadinglights]

I've been a constant weight over past 20 years! Not over weight by any means. But I have a devil of a job controlling my blood sugars.

Had the weight loss you experienced that long ago had continued then it would have been more likely that Type 1 would have been the diagnosis but if Type 2 than making sure you are restricting your carb intake is important, maybe starting your food diary might be helpful to see which your problem foods are.

 

[rebrascora]

It would be really helpful to know what medication you are currently using to manage your diabetes because that can impact dietary advice and it might not be safe to go too low carb if you are now using Gliclazide or insulin or Semaglutide.

If now using insulin, that would explain why the weight loss halted so knowing this bit of information can be really important.

 

[Welshnoshnoggins]

Well here's the rub. When I joined the RAF in 1967, aged 20 years, I was about 9stone which I maintain all my service life, 12 years in all. Though food intake, + plus alcohol levels were an all time high. Then I joined the BBC in London in the 80/90s. Again food diet and alcohol levels much to be desired! Then in my last job before I retired, and in 2002 when I was diagnosed with type 2 diabetes my weight had gone down to 8stone!!!! Now in 2022 I'm at 12stone. My medications for diabetes is: Sitagliptin, Metformin, NovoRapid and Lantus Solostar. I have never been able to follow an appropriate diet to bring my blood sugars down to an acceptable level. I need help my friends before parts of my body start to disappear!
Best wishes Welshnoshnoggy

 

[Leadinglights]

Well here's the rub. When I joined the RAF in 1967, aged 20 years, I was about 9stone which I maintain all my service life, 12 years in all. Though food intake, + plus alcohol levels were an all time high. Then I joined the BBC in London in the 80/90s. Again food diet and alcohol levels much to be desired! Then in my last job before I retired, and in 2002 when I was diagnosed with type 2 diabetes my weight had gone down to 8stone!!!! Now in 2022 I'm at 12stone. My medications for diabetes is: Sitagliptin, Metformin, NovoRapid and Lantus Solostar. I have never been able to follow an appropriate diet to bring my blood sugars down to an acceptable level. I need help my friends before parts of my body start to disappear!
Best wishes Welshnoshnoggy

You have just said 'My medications for diabetes is: Sitagliptin, Metformin, NovoRapid and Lantus Solostar. I have never been able to follow an appropriate diet to bring my blood sugars down to an acceptable level. I need help my friends before parts of my body start to disappear!'
My answer would have been rather different if you had said about your medications as the suggestions may be totally inappropriate in your situation and could even be dangerous. Your initial post implied you were not on any diabetic medications.
You need advice from either your diabetic team or from the people here who have experience of those medications.

 

[rebrascora]

Good to see that you are on a modern basal (NovoRapid)/bolus (Lantus) insulin regime but perhaps the balance isn't quite right if your levels are all over the place. Can you tell us how many units you take of each? Do you carb count your meals ie. Work out the amount of carbs in what you are going to eat and then adjust the doses accordingly or do you just inject fixed doses?
What sort of BG levels are you seeing?
Sounds to me like you may be a misdiagnosed Type 1 if you were down to 8st at diagnosis. How long have you been using insulin? Was that introduced at the same time as you were diagnosed?

Who supports you with your diabetes management? Is it a nurse at your GP surgery or do you visit a specialist diabetes clinic.... or perhaps just phone calls in the current climate?

When was your last HbA1c blood test and what was the result?

Sorry for all the questions but need to know the full picture before we can point you in the right direction....

 

[Welshnoshnoggins]

Hi Bill and welcome from me too.

Curious to know if the nurse was right and you did feel like you had been on holiday after taking the Metformin because many of us would be rather unhappy about such a holiday! 🙄

Would you like to tell us a bit about your current diabetes management regime? Are you still just on Metformin or have things progressed on that front?
It sounds like your levels have perhaps been creeping up? Do you home test and if so, what sort of readings are you getting?
Did that dramatic weight loss settle down or reverse? Unexplained weight loss at diagnosis is more often associated with Type 1 diabetes rather than Type 2 so your mention of weight loss makes me wonder if you might actually be a misdiagnosed slow onset Type 1 and perhaps that is why you are now struggling to manage your levels?

If you can give us more information then it helps us to understand your situation better and make more appropriate comments.

Well rebrascora. Well my daily routine consists I arise from my bed about 0845, check my bs which is normally around 10 Meols, I then have a cup of tea and a biscuit with my wife. At 10 o'clock we have breakfast, which could be porridge to a fry up! Test blood sugars, usually high as you can imagine, before breakfast and take 8 units of NovoRapid. Then around 1330, we have lunch which could be soup or crisps and cake. Bs can be up, down, but never can tell, but take 4 us of NovoRapid. Then at about 1800 we have dinner. Which varies. BS high. 8 units of NovoRapid. Then at 2200 just before bed BS again, never know what is going to be! 9 us of Lantus Solostar. Yes it is haphazard. I've never been able to keep to a strict regime. Which I sorely need. I've seen so many dietitians over the years, but nothing seems that constructive. Of course some of it is willpower. And a good meal plan. So there you have in folks.

 

[rebrascora]

Hi. It sounds quite structured compared to my lifestyle where I have no set times for waking up or meals and often skip meals. The insulin regime you (and I) are on, allows for a lot of haphazardness (or I would be well goosed!!) so don't worry about lack of routine (old fashioned mixed insulins needed routine but the 2 separate insulins you use allow flexibility) but you need to know how to use the insulin to best effect.
It sounds like you are taking fixed doses of NovoRapid (NR) regardless of what you eat, rather than carb counting and adjusting your doses. Am I right in that assumption .... so if you had a fry up, you would still inject 8 units as you do for porridge?
Also, do you adjust your NR dose if your levels are high before your meal.... Adding a bit of extra insulin when you levels are high is called a "correction" So for instance, if my levels were at 10 at breakfast time, that is too high and ideally I would want them to be about 5 or 6, so I would add an extra unit or two to my breakfast dose. However that would depend on the food I was going to eat. A fry up is quite low carb so would not need so much insulin so the normal 8 units may be enough. The porridge on the other hand which is high carbohydrate may need all 8 units and so the extra correction units added to that might help to bring you down into range by lunchtime

It is important to understand how diabetes and insulin works in order to manage diabetes well. Basically all carbohydrates that we eat break down into glucose in our blood stream and raise our blood glucose levels. Insulin is used to remove that glucose. Too much insulin and we go too low, not enough and we go too high. Getting the insulin doses right is key to balancing things. So your breakfast porridge contains a lot of carbs so will produce a lot of glucose and will therefore need more insulin than bacon and eggs and sausage and mushrooms and maybe one slice of toast or fried bread I am guessing? Grains and grain products (like flour used to make bread and pasta and pastry and breakfast cereals including porridge) are all high in carbs and will increase your levels. Meat and eggs and mushrooms are very low carb, so need much less insulin.... unless you have quite a bit of toast or fried bread or a pile of hash browns with them (potatoes and potato products are also high carb) So a breakfast of bacon and eggs with no toast/bread/ hash browns could very easily cause you to hypo if you injected 8 units of NR for it, whereas your bowl of porridge or cereal may well need all of it.

Also, can I ask how far in advance of your meal do you inject the NR or do you do it just before you eat? Insulin needs time to get into your blood stream and often our digestive system is much quicker to digest our food than the time we have given our insulin to work. Basically, the NR needs a decent head start. I actually inject my breakfast insulin before I set foot out of bed and then have breakfast 45 mins later because it takes that long for my insulin to get going. Some people only need 30 mins. If your levels are high when you wake up, then your insulin will need longer to be effective, so if you just inject 10 mins before you eat breakfast, your insulin is probably always going to hit your blood stream long after the glucose from your food has. This means that your BG levels spike really high after your meal and then the insulin has an even bigger job to bring them down and generally level;s going high and then coming down makes us feel rubbish and puts a strain on our bodies, so preventing that spike by injecting your insulin sooner will help. It is like you racing against Usain Bolt.... with all due respect, you are likely to need quite a head start to give you any chance at all when you get near the finish line. Despite the name, NovoRapid is more affectionately known as NovoSluggish or Novo(not so)Rapid here on the forum.

Don't want to bamboozle you with too much info, so going to leave it at that for now and if you have any questions about what I have written, please ask.