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Surprise diebetes diagnosis

R

Royjk

Well-Known Member
So, my neurologist suggested that I might be diabetic a couple of years ago, so I started taking the tablets. Halved the amount of sugar in my tea, and carried on as if nothing had happened.
Regular blood testing every Sunday made it easy to eat little and make it 3 or 4 hours after eating before testing. This generally gave good results A1c between 43 - 53, and blood sugar 11 - 13. Metaformin changed to Trajenta, but all OK.
Then two weeks ago I scored a 29 on the blood sugar meter, and this weekend scored 103 for the A1c.
This came completly out of the blue, I thought that type 1 diabetics took insulin, and type 2's always had tablets. But surprisingly I was wrong. It seems that Type 2's also need basal and bolus insulin, tuned to their diet, and I am facing the week before Christmas getting ready to cut out all white bread, soft drinks, potato's and a host of other food. I am sure that Christmas pudding, and mince pies as well as roast potato's will be off the menu.
So I am Royjk and I'm a diabetic.
 
hi Royjk and welcome.

Where have you been getting your information from? I'm not sure that some of what's been said to you has been all that helpful.

Normal blood glucose is under 42 mmol/mol on an Hba1c test (graph attached). You'll automatically be diagnosed with T2 with an HbA1c above 48, but that doesn't mean that A1cs below 48 are fine. I had a full complement of diabetic symptoms with BG figures around 43/44.

If you are going to try low carb, it's all bread that will have to go - white or wholemeal makes little difference, it's all carb. I have no experience of insulin (or any other diabetic medication) so can't advise you on that, but if you are going to give low carb a go you'll need to get used to assessing the carb content of food rather than what the media says is "healthy" - it probably isn't for us.

It's a bit of a challenge at this time of year - things like Christmas puddings and mince pies are loaded with sugar and starches, beer is carb heavy, and everyone else is tucking in.


This forum is a great resource and helped me immensely. You can ask as many questions as you like, and there's no such thing as a stupid question. Best of luck.
 

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Hello Kenny,

Thanks for the response and welcome.

I see your graph, but unfortunatly I am starting at 103 HbA1c it will take time to get to a normal state. I dont actually know what to aim for as diabetics never achieve the normal that non diabtics have.

So I have relied upon good old Dr Google for my information so far. I started on diabetes in 2021 because I was taking a lot of steroids at the time for a medical condition, I have never had any known symptoms of type 2 diabetes, so up until last Friday when the Doctor started me on insulin and my symptoms are really just shock. Up till now medication for diabetes has just been something of a precaution.
So I have been aiming for a after meal blood reading of between 11 - 13, and achieved this by never testing unless I had taken the medication. A very sound principle, if you cannot find it it does not exist. I supose that is a bit like shutting your eyes, sticking your fingers in your ears and going La La La.
But now I am suddenly confronted with 5 or 6 blood tests a day, and insulin injections, plus empagliflozin. Also my old tablets no longer work so I must do the injections going forward.
I am now aiming for blood tests of 5-8.2, but they are coming out at 11 - 21. The doctor will tune these in for me over the next days, then I will need to know how to adjust my insulin jabs myself.

You are correct that it will be hard to eliminate white bread rolls, chips, and juices, soft drinks. So i am learning how to count carbs, but I see that counting carbs is not the way forward. I must just not eat these things anymore, unfortunatly my will power is not very strong.

I hope to find lots of information here on this forum, where many people have dealt with these problems and I hope their stories will help show me a way forward.

This week I am very focused on diabetes, and how to control its effects.

But I am only a new starter in this club, I know nothing.
 
I'm in a similar position, @Royjk . I was 'diagnosed' two weeks ago following a blood test for something completely unrelated. My HbA1c level was 104. I'm still waiting for my GAD result to come back but have started on metformin in the meantime.

It came as a massive shock to me. Everything else in my full bloods was absolutely fine. Other than my age (47) I don't have any obvious risk factors - I only eat meals cooked from scratch, I don't eat meat (not that it makes any difference for diabetes) and massively physically active and my BMI is on the low end of 'normal'.

I've cut-out carbs from my diet, the first 10 days felt brutal as I had a sweet tooth. I've had my first appointment with the diabetes nurse and after the initial shock of it all I am determined to do everything that I can to maximise the easy wins (I loved a chewy sweet :() and marginal gains to improve my health. I will miss having an ice cold can of Coke, roast potatoes and normal chocolate, but the last couple of weeks has been a wake-up call for me. I feel absolutely fine in myself - I've not been healthier in my whole life, but I can't dwell on that as the bloods don't lie (even though it wasn't until I had my confirmatory test two weeks later to confirm the levels of the first one were correct).

I've got the 2 week trial for the Abbott Freestyle Libre and also have a finger prick glucose monitor.

I just wondered whether anyone else has had a C-Peptide test? I assumed that my bloods I had done the other week were for this test - but my GP practice confirmed that it was for GAD.
 
This is rather confusing... You got tablets because you might be diabetic, and as a precaution? With numbers like that, you were diabetic, sorry. As Kenny mentioned, you were seeing numbers of the prediabetic and the diabetic range, so you were already there. Not a precaution: you were most certainly diabetic. And with numbers ranging between 11 and 13 when on medication, and ignoring things as much as possible the rest of the time, I can't say the latest HbA1c is out of the blue. To you, maybe, yes.... But that's more a matter of not having gotten proper information from your doc/practice for whatever reason. They really let you down, sounds like. I'm sorry you got to deal with this just before the holidays, it must be quite traumatic!

Type 1's are on insulin, yes, because they don't make their own. Type 2's make plenty, but are insensitive to it. So yeah, if diet and oral medication don't cut it anymore, adding extra insulin through injections is kind of the go-to, even though it would be better to improve insulin sensitivity. Insulin is the quicker fix, I suppose.

So you're looking at your diet, which is good... And while it is a bit difficult with the holidays, you can go nuts on turkey (though not the stuffing, alas), ham, what have you... Sprouts with bacon and whatnot. Just keep in mind that if you're on blood glucose lowering medication, like insulin, and you lower your carbohydrate intake, you're running the risk of hypo's. So do test like there's no tomorrow, make adjustments where you need to, if you do decide to cut out carbs like potatoes, bread, pasta, rice, cereal, corn, anything grain-based, really, most legumes and most fruits... Focus on meat, poultry, (full fat) dairy, fish, above ground green non-starchy veg , and your blood glucose should start coming down quite a bit. Maybe ditch the sugar in your tea?

All that said, it doesn't work all too well if you're on insulin, start reducing carbs and stick your head in the sand, which you mentioned doing. If you know you're going to test maybe once every blue moon after a bit, you're avoiding checking for hypo's as well. (You have to be 5 mmol/l or over to drive without insurance issues, to boot.). So whatever path you take down the diabetes-road, know yourself, and be aware of what you're doing. If you're avoidant by nature, which, you know, some people just plain are through no fault of their own, calculate that into how your treatment goes. Can you count on yourself to keep a proper eye on things and keep you safe, from here on in? Because needing to do that and actually doing it are two different things.

Whatever happens next, be safe, and when you have questions, just throw them onto the forum. Usually there's someone around who can help.
Hang in there eh.
Jo

PS: http://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help explain things a bit as well.
 
Hello @ Chasingremission, the high blood test can be the start of a change in life. But at least you are now doing meds to start dealing with it. I have not come across GAD, but I suspect my pending pancreas blood test will be C-peptide. It took only 8 weeks for my A1c to rise from 42 to 103 it was a very quick change. The doctor thought that my system had stopped working, thats why he took me off tablets and started the basal-bolus insulin pens. However injections do not hurt.
Cutting carbs seem to be the way forward as they seem to be the cause of high sugar, however I am not at all sure that it is as simple as that. So I am sure your doctor will monitor everthing and the practice nurse will sort out diet problems with you. Luckily diabetus does not always seem to have lots of immediate problem symptoms.
I think that the freestyle thing, could be good as I am told it shows glucose level without all that finger pricking every couple of hours.
Royjk
 
Royjk said:
Hello Kenny,

Thanks for the response and welcome.

I see your graph, but unfortunatly I am starting at 103 HbA1c it will take time to get to a normal state. I dont actually know what to aim for as diabetics never achieve the normal that non diabtics have.

So I have relied upon good old Dr Google for my information so far. I started on diabetes in 2021 because I was taking a lot of steroids at the time for a medical condition, I have never had any known symptoms of type 2 diabetes, so up until last Friday when the Doctor started me on insulin and my symptoms are really just shock. Up till now medication for diabetes has just been something of a precaution.
So I have been aiming for a after meal blood reading of between 11 - 13, and achieved this by never testing unless I had taken the medication. A very sound principle, if you cannot find it it does not exist. I supose that is a bit like shutting your eyes, sticking your fingers in your ears and going La La La.
But now I am suddenly confronted with 5 or 6 blood tests a day, and insulin injections, plus empagliflozin. Also my old tablets no longer work so I must do the injections going forward.
I am now aiming for blood tests of 5-8.2, but they are coming out at 11 - 21. The doctor will tune these in for me over the next days, then I will need to know how to adjust my insulin jabs myself.

You are correct that it will be hard to eliminate white bread rolls, chips, and juices, soft drinks. So i am learning how to count carbs, but I see that counting carbs is not the way forward. I must just not eat these things anymore, unfortunatly my will power is not very strong.

I hope to find lots of information here on this forum, where many people have dealt with these problems and I hope their stories will help show me a way forward.

This week I am very focused on diabetes, and how to control its effects.

But I am only a new starter in this club, I know nothing.
Click to expand...
Hmm... who told you that diabetics "never achieve the normal that non diabtics have"? I am T2 diabetic, and have had bang normal blood glucose for getting on five years - and that goes for other people on here (have a look at the "Success Stories" section). I do NOT mean to imply that my T2 is cured. It isn't. I just control my BG by strictly limiting carb intake. So I "count carbs" in the sense that I aim for around 20g/day. That is roughly the equivalent of one apple or a slice of bread (neither of which I eat).

Google is good for some things but about diabetes it can be very misleading. You'll see advice for T1s passed off as advice for T2s, and vice versa. You'll also sometimes see advice that can be positively harmful, and sometimes that can come from official sources.


I'd encourage you to ask questions on the forum - I found it the best way to learn.
 
@Royjk The GP gave me literally 5 minutes - I had gone in for something else unrelated and just asked about my second HbA1c where he said "Well, you've got diabetes", so I'm not massively convinced that they are 'on top of it' :confused:!! The diabetic specialist nurse was a lot more thorough - I had an hour with her. I'm not due to be back for further blood tests until February. They have referred me to some course run by an endocrinologist in secondary care - but until I have a formal diagnosis I'm still a bit mystified as to how I go forward. I don't think the dietician advice will be that helpful but I do have a referral for that as well.

I'm really keen to participate in research studies but I suppose I have to see whether it is T1 / T2 etc before I can. They aren't recruiting in my local surgery so I will look further afield.
 
@Royjk - The classic way of thinking about the progression into being diagnosed as type 2 is that, over a long period of time, as you eat a carb-heavy meal you trigger a release of insulin that the body needs to "clear away" the otherwise toxic levels of glucose in your blood.

As time goes on, you need more and more insulin to do the same job, so a building issue of "insulin resistance" is going on, even if your blood sugar levels are going up very slowly.

Then - at some point, your pancreas cannot keep up the level of insulin production, and the insulin levels drop, meaning that your blood glucose shoots up, and this is when typically, you are diagnosed.

However, that's the very over-simplified explanation. Insulin is hugely complex, and many things can cause insulin resistance, independent of food, but having the same effect (that now you need more to do the same job, and you are into that same spiral).

One of the things that can directly cause insulin resistance at the cellular level - is steroids. Insulin, for example - is also a steroid, so while your story may seem all disconnected, it may be that having had to take steroids for a long period, it could have accelerated that process of increasing your resistance to insulin. The good news, is that all the same advice applies - fighting this is still about reducing that level of circulating insulin, so that you can become more sensitive to it, and you can do that by reducing the foods that trigger the body to release insulin- mainly focusing on sugar and starch.

Welcome - I'm sure everything will feel shocking and strange - we all feel that way ...
 
ChasingRemission said:
until I have a formal diagnosis I'm still a bit mystified as to how I go forward.
Click to expand...
@ChasingRemission - I spend nearly a year in a similar wilderness - it seemed to me that there was a kind of grey area between type 1 and type 2 - there is not; they seem very similar, but are the result of a complete opposite imbalance of the hormone, insulin - T1 - not enough - T2 chronically too much.

T1 is an autoimmune disorder - so you can (and maybe already have ) be tested for the antibodies that result from the bodys attempt to stop the autoimmune attack on the pancreas - you need these results quickly - I didn't understand the importance, and did not get my results for months, by which time I had been treated in exactly the wrong way - making things worse.

The other test you should ask for is called a C-Peptide. This looks for a natural byproduct of insulin made in the body - the result of this test combined with the antibody test should give you a confident diagnosis of 1 or 2

<edit - just realised I was replying to only one of your posts - yes - fight for that C-Peptide, and make sure you get the GAD results quickly>
 
Hello Jo, I was origanally told that I should have checks for diabetes as a precaution by my Neurologist, who had me doing a high dosage of steroids. I went for an appointment and before I saw her I had dropped into KFC for chicken and Pepsi, 30 min later she did a blood test and suggested that I may have diabetes. If I had know she would do the test I would not have eaten til after the appointment.
My A1c was 42 in October this year, and I never expected to be doing insulin, for me until I spoke with the doctor last week diabetes was not high on my to do list.
My doctor told me everything, and gave me as much time as was needed for help and advice, also the practice nurse explained everything. My doctor has never let me down. I dont yet know why my tablets failed, I was on 6 a day before meals.

I like your ideas on diet, and have already dropped white bread roll for nuts, and to watch out for hypos, I will aim for a minimum of 5 on the daily finger tests, I am keeping a simple graph to show where I am. I must get used to how much the insulin reduces the blood sugar. I lost the sugar in my tea after reading about taking a little apple vinegar or lemon/ lime juice before I eat. Diluted vinegar is horrible, but the lime juice is Ok so I put it in my mint tea.

Interesting to hear that 5 mmol/l is the lower limit for driving, I did not know that. How do people cope with that? I dont drive now so it does not really affect me.

I hope to find answers here on the forum.

Thanks for the nutritional thingy your quite well informed on this stuff aren't you.

Royjk
 
Royjk said:
So, my neurologist suggested that I might be diabetic a couple of years ago, so I started taking the tablets. Halved the amount of sugar in my tea, and carried on as if nothing had happened.
Regular blood testing every Sunday made it easy to eat little and make it 3 or 4 hours after eating before testing. This generally gave good results A1c between 43 - 53, and blood sugar 11 - 13. Metaformin changed to Trajenta, but all OK.
Then two weeks ago I scored a 29 on the blood sugar meter, and this weekend scored 103 for the A1c.
This came completly out of the blue, I thought that type 1 diabetics took insulin, and type 2's always had tablets. But surprisingly I was wrong. It seems that Type 2's also need basal and bolus insulin, tuned to their diet, and I am facing the week before Christmas getting ready to cut out all white bread, soft drinks, potato's and a host of other food. I am sure that Christmas pudding, and mince pies as well as roast potato's will be off the menu.
So I am Royjk and I'm a diabetic.
Click to expand...
Just out of interest, have you had a covid vaccination recently?
 
Royjk said:
Hello Jo, I was origanally told that I should have checks for diabetes as a precaution by my Neurologist, who had me doing a high dosage of steroids. I went for an appointment and before I saw her I had dropped into KFC for chicken and Pepsi, 30 min later she did a blood test and suggested that I may have diabetes. If I had know she would do the test I would not have eaten til after the appointment.
My A1c was 42 in October this year, and I never expected to be doing insulin, for me until I spoke with the doctor last week diabetes was not high on my to do list.
My doctor told me everything, and gave me as much time as was needed for help and advice, also the practice nurse explained everything. My doctor has never let me down. I dont yet know why my tablets failed, I was on 6 a day before meals.

I like your ideas on diet, and have already dropped white bread roll for nuts, and to watch out for hypos, I will aim for a minimum of 5 on the daily finger tests, I am keeping a simple graph to show where I am. I must get used to how much the insulin reduces the blood sugar. I lost the sugar in my tea after reading about taking a little apple vinegar or lemon/ lime juice before I eat. Diluted vinegar is horrible, but the lime juice is Ok so I put it in my mint tea.

Interesting to hear that 5 mmol/l is the lower limit for driving, I did not know that. How do people cope with that? I dont drive now so it does not really affect me.

I hope to find answers here on the forum.

Thanks for the nutritional thingy your quite well informed on this stuff aren't you.

Royjk
Click to expand...
Hey Royik,
Well, it was a steep learning curve, and most of it I got from Dr. Jason Fung's The Diabetes Code, which I wholeheartedly recommend. He's gotten people off insulin with his method, so that might be of interest to you.

There is such a thing as steroid induced diabetes. Steroids make your blood sugars go up, and take them for a long time, well... Blood sugars stay high. Sometimes there's just no way around it though, when you need them, you need them, and the blood sugars just will have to be dealt with. If it's any consolation, it is quite likely that while the coke and KFC upped your blood sugars before the test, odds are you ended up quite a bit higher than would have been normal/non-diabetic for such a meal. If you hadn't eaten that? It might've gone undiagnosed for quite a while yet, and take it from someone who went undiagnosed for years: the damage high blood sugars do over time are not pleasant, and take a long time to heal.

The lower limit for driving is only for people with blood glucose lowering meds, like insulin or gliclazide; the average T2 on metformin or diet-only doesn't have to cope with that. Just a matter of a finger prick before leaving, keeping something with carbs handy. But for now that seems to be a non-issue, so that's alright.

...And I'm in the process of burning dinner, I have to go. Hang in there, read and learn nots, and see what suits your situation.
Hugs,
Jo
 
Hello @Chris24Main, you have summed up what I belive has happened. I was taking two types of diabetic medication, and everthing was ok in October. Then these medications stopped working, and the doctor changed me to Insulin and one tablet. Now in this last 6 days I have been trying to bring down my blood glucose level, with titration of the two insulins. I have been taking daily regular steroids for the past 3 years. I want to bring my blood test results down to bring them into a range of 5 - 8.2 mmol/l.
Thanks for the welcome and I can see that there are many answers here.
Royjk
 
Royjk said:
Hello @ Chasingremission, the high blood test can be the start of a change in life. But at least you are now doing meds to start dealing with it. I have not come across GAD, but I suspect my pending pancreas blood test will be C-peptide. It took only 8 weeks for my A1c to rise from 42 to 103 it was a very quick change. The doctor thought that my system had stopped working, thats why he took me off tablets and started the basal-bolus insulin pens. However injections do not hurt.
Cutting carbs seem to be the way forward as they seem to be the cause of high sugar, however I am not at all sure that it is as simple as that. So I am sure your doctor will monitor everthing and the practice nurse will sort out diet problems with you. Luckily diabetus does not always seem to have lots of immediate problem symptoms.
I think that the freestyle thing, could be good as I am told it shows glucose level without all that finger pricking every couple of hours.
Royjk
Click to expand...
That fast rise in blood sugars is similar to my brother’s situation. My brother (diagnosed T2 for years, but kept it at pre diabetic levels) started on a diet to lose some weight, but when he reached his ideal weight his weight just kept on dropping off. He was diagnosed T1 after starting to go into DKA with blood sugars at 40 mmol/ls or around 800 mg/dl. Glad your Dr is on it.
 
Hello @KennyA
I get where you're coming from. It is a bit like a balancing act, trying to keep track of everything you eat. But carb counting is about empowering a person to make informed choices that help manage blood sugar levels effectively.
You must have a lot of will power, it all seems so complicated for me at the moment.
Royjk
 
Royjk said:
Hello @KennyA
I get where you're coming from. It is a bit like a balancing act, trying to keep track of everything you eat. But carb counting is about empowering a person to make informed choices that help manage blood sugar levels effectively.
You must have a lot of will power, it all seems so complicated for me at the moment.
Royjk
Click to expand...
It will feel like that right now. I don't think I'd picked up from your first posts that the big A1c rise has happened so quickly. makes me think that you are possibly far from a typical T2, and I'd underline the caution about what you might read on the internet.

Willpower - yes it helps. But what helped me more was the promise of getting rid of the horrible symptoms I'd had in some cases for over ten years. I do have some permanent damage, but not like it was before 2020. I'm genuinely interested in how things work out for you, please keep posting.
 
Hello @Melgar

Yes, the reason I went to the doctor was just for a quick checkup on a PET scan. He immediatly changed my medication and sent me straight off to the diabetic surgery. I had seen a couple of weeks at 26 and 29 mmol/l two hours after food. I had been happy with 13 but 29 was a little too high to feel in control.
With both T1 and T2 it seems the necessary treatment is to reduce and control glucose levels in the blood. I am fortunate to have a good doctor.
Royjk
 
Chris24Main said:
@ChasingRemission - I spend nearly a year in a similar wilderness - it seemed to me that there was a kind of grey area between type 1 and type 2 - there is not; they seem very similar, but are the result of a complete opposite imbalance of the hormone, insulin - T1 - not enough - T2 chronically too much.

T1 is an autoimmune disorder - so you can (and maybe already have ) be tested for the antibodies that result from the bodys attempt to stop the autoimmune attack on the pancreas - you need these results quickly - I didn't understand the importance, and did not get my results for months, by which time I had been treated in exactly the wrong way - making things worse.

The other test you should ask for is called a C-Peptide. This looks for a natural byproduct of insulin made in the body - the result of this test combined with the antibody test should give you a confident diagnosis of 1 or 2

<edit - just realised I was replying to only one of your posts - yes - fight for that C-Peptide, and make sure you get the GAD results quickly>
Click to expand...
Thanks @Chris24Main . I've called the GP surgery every day after the first week since I had my blood test for GAD. I was under the impression I had the C-Peptide (but it turns out I haven't!) - but I will push for that one as well. I'm surprised that the diabetic nurse and the GP seemed to be pretty relaxed about this and are working under the assumption that it is T2. Can the GAD alone not give absolute confirmation as to my diagnosis?

Obviously I'm very anxious to get a proper understanding. 4 years ago my wife was diagnosed with a cancer that we were told would be incurable - but after one year of treatment and a complete change in her diet and lifestyle she has been in a position of 'no evidence of disease' for three years, which is of course incredible and cause for joy itself, but also gives me hope that I can reverse it if it is T2 - and to manage it as best as possible if it turns out to be T1 or something else.

Also @JoKalsbeek - that's a really useful 101 introduction for anyone newly diagnosed to read about diet - thanks.
 
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