Confused about my diabetes

[DodgyScotsman]

Hi, I was recently diagnosed in November after having blood tests done due to an unrelated health issue at the time. My GP told me I was type 2 and I got the NHS packet out on what to eat and live healthy etc.

Not long later I started seeing a Diabetic Doctor as an outpatient at my local hospital who ran all the test possible. Even had a CT scan of my pancreas. Was told I don’t have any of the antibodies they look for, for type 1. I’m not in the weight range or age for type 2 and show no symptoms of having diabetes apart from high blood sugar levels.

Fast forward to yesterday and my Diabetic Doctor is saying I’m type 1 and my insulin production is probably running and that maybe in a few months or years I will need to start insulin.

I’m just really confused because they still can’t find antibodies but was told sometimes they don’t show up on tests. Guess I just have anxiety over not having a clear answer.

My Doctor basically said eat what I want as long as it’s in healthy amounts and not to worry about my sugar levels at the moment. Just test once a week to a few times a month and if I notice a change contact them.

Has anyone else experienced anything like this? Guess I just have anxiety over it and worried that someone may be wrong.

Thanks.

 

[Martin.A]

There's a lot I don't understand about what you've been told. For a start there is no weight range or age for T2 and it's not uncommon for people to be diagnosed without symptoms. Were you told what your HbA1c was? As for eating what you want and not worry about blood sugar levels, that's completely wrong as failure to manage BG levels can lead to diabetes complications, with diet being a key part of BG management, along with being more active and, if needed, losing weight. It almost sounds like your GP has taken the view that you have diabetes, there's nothing you can do about it so we'll just let it take its course until you need to go on to insulin.

 

[Leadinglights]

Hi, I was recently diagnosed in November after having blood tests done due to an unrelated health issue at the time. My GP told me I was type 2 and I got the NHS packet out on what to eat and live healthy etc.

Not long later I started seeing a Diabetic Doctor as an outpatient at my local hospital who ran all the test possible. Even had a CT scan of my pancreas. Was told I don’t have any of the antibodies they look for, for type 1. I’m not in the weight range or age for type 2 and show no symptoms of having diabetes apart from high blood sugar levels.

Fast forward to yesterday and my Diabetic Doctor is saying I’m type 1 and my insulin production is probably running and that maybe in a few months or years I will need to start insulin.

I’m just really confused because they still can’t find antibodies but was told sometimes they don’t show up on tests. Guess I just have anxiety over not having a clear answer.

My Doctor basically said eat what I want as long as it’s in healthy amounts and not to worry about my sugar levels at the moment. Just test once a week to a few times a month and if I notice a change contact them.

Has anyone else experienced anything like this? Guess I just have anxiety over it and worried that someone may be wrong.

Thanks.

Welcome to the forum, you must be rather confused with what seems like conflicting information i.e. you may need insulin but don't worry about diet and don't test.
What was you HbA1C as that may also give a clue.
There is a form of diabetes termed LADA, which is a slowly developing form of Type 1 usually in adults so that may be what they are thinking you may be and there are several people here with that diagnosis who manage the condition in various ways.
Did you also have a c-peptide test as well as the antibody tests as that should show how much insulin you are producing.
You may want to get some clarity from the diabetic clinic or you GP.

 

[helli]

There is a form of diabetes termed LADA, which is a slowly developing form of Type 1

There is no official definition of LADA - some just see it as Type 1 diagnosed as an adult, Some see it as Type 1 with insulin resistance. Some see it as Type 1 that develops slowly but as it develops slower in adults than children, that is hard to confirm.
So many avoid the confusion by just calling it Type 1.

there are several people here with that diagnosis who manage the condition in various ways.

There is only one way to manage Type 1 diabetes - with insulin.

 

[AndBreathe]

I'm a bit confused, and if this were me, based on what you have said, I might have some concerns.

Do you mind saying what your blood sugar numbers were when diagnosed, and what, if any action has been taken since (aside from the investigations you mention)? Have you modified your diet (you mentioned leaflets), or been started on any medication at all?

Finally, was the "other condition" an infection or anything requiring steroids, perhaps?

On the face of it, I'm reading you are diagnosed with elevated sugar levels, probably Type 1, but to eat whatever you like, provided sensible amounts and not bother to keep an eye on the numbers?

 

[Inka]

Welcome @DodgyScotsman 🙂 What you’ve been told does sound a bit confusing. You’ve said you didn’t have any Type 1 antibodies, but did they also do a C Peptide test. If so, what was your result? And what was your HbA1C?

 

[Proud to be erratic]

On the face of it, I'm reading you are diagnosed with elevated sugar levels, probably Type 1, but to eat whatever you like, provided sensible amounts and not bother to keep an eye on the numbers?

I also made this interpretation from what I read and as you've already said there could well be other issues in the mix here, such as steroids. Also, as many others have asked @DodgyScotsman's what is your HbA1c?

No wonder @DodgyScotsman is "Confused about my diabetes" and I have great sympathies with this predicament. The one thing that does stand out to me is the perception of no intermediate advice about diet right now, ie "eat whatever you like". That just does not feel appropriate, from what has been said so far. My instinct is either start on insulin right now or take steps to reduce carb intake until there is a clearer diagnosis.

 

[DodgyScotsman]

Thanks everyone for the great responses. Unfortunately I’m not sure what my hb1ac was when I was diagnosed I’m going to guess somewhere in the 60s but could be wrong.

At first I was told to lower my carbs and sugar intake and monitor my blood sugar levels 4 times a day. I did this but in the space of a few months I lost over a couple of stone in weight. Just for reference im 6ft have great cholesterol and while not the most physically fit person I work an extremely demanding physical job.

This is what caused me to have a CT scan as they were concerned I may of had pancreatic cancer. At this point I was also told I don’t fit the criteria of common types of diabetes and it was going to be an ongoing process.

For the past few months I have increased my intake of food especially high carbs and sugar to put my weight back on as I was getting consistently unwell, tired and just struggled with day to day life. Despite this the hb1ac I just had on Monday has come back as lower than my last which I’m sure was in the low 50s despite me increasing my intake of everything across the board.

Obviously this may be incorrect as my memory is garbage and may be either misremembering things or not getting the context right. Either way I specifically asked my Diabetic Doctor yesterday and was told type 1 and that I would need insulin but not yet.

Edit* Should I be calling and asking for clarification and if so what questions should I be asking.

Edit2* Definitely had a peptide test near the start but couldn’t say what the results were of it.

Thanks.

 

[Leadinglights]

Thanks everyone for the great responses. Unfortunately I’m not sure what my hb1ac was when I was diagnosed I’m going to guess somewhere in the 60s but could be wrong.

At first I was told to lower my carbs and sugar intake and monitor my blood sugar levels 4 times a day. I did this but in the space of a few months I lost over a couple of stone in weight. Just for reference im 6ft have great cholesterol and while not the most physically fit person I work an extremely demanding physical job.

This is what caused me to have a CT scan as they were concerned I may of had pancreatic cancer. At this point I was also told I don’t fit the criteria of common types of diabetes and it was going to be an ongoing process.

For the past few months I have increased my intake of food especially high carbs and sugar to put my weight back on as I was getting consistently unwell, tired and just struggled with day to day life. Despite this the hb1ac I just had on Monday has come back as lower than my last which I’m sure was in the low 50s despite me increasing my intake of everything across the board.

Obviously this may be incorrect as my memory is garbage and may be either misremembering things or not getting the context right. Either way I specifically asked my Diabetic Doctor yesterday and was told type 1 and that I would need insulin but not yet.

Edit* Should I be calling and asking for clarification and if so what questions should I be asking.

Edit2* Definitely had a peptide test near the start but couldn’t say what the results were of it.

Thanks.

It would be a good idea to find out what those results were and then it would be easier to put your situation in context.

 

[Inka]

If you have the NHS app, you should be able to see your blood test results hopefully @DodgyScotsman The C Peptide would be particularly interesting as it shows how much insulin your body is producing. There are charts online that indicate what the level might suggest.

Type 1 often comes on more slowly in adults, and this is what some people call LADA/Type 1.5. Early introduction of insulin is thought to help preserve the remaining insulin-producing cells longer. My consultant doesn’t use the term really as it can mean different things to different people.

Do you test your blood sugar at home? If not, I would do. I’d do systematic testing to see exactly what’s happening. As an example, when I was first diagnosed with Type 1, I was still making some of my own insulin, but it was too late and sometimes too much. I experimented with omitting my insulin (not a thing I recommend) and I then saw that my blood sugar would go up to the 13s after breakfast but by before lunch it had come down to around 3.7. However, my consultant explained that that would be taxing my own islets and that I should take insulin, which I did. I wonder if your HbA1C is being similarly affected - highs being hidden by lower ‘rebounds’?

Edited to add that I’m Type 1, confirmed by antibody tests. My consultant called my presentation “atypical” but tests confirmed I’m Type 1.

 

[Nayshiftin]

Hi. Welcome.
Okay, I am definitely confused because I feel you have so much said to you and nothing to go on. I would go back and say you need to know.
If you have diabetes you need to know the type you have. If type one I think you would be on insulin.
I am with leadinglights that type 2 has different managing techniques depending on each individual. i doubt your HBA1c is 60 or they may have given you Metformin.
My guess is you are prediabetic and they are keeping an eye on it.
You could be at risk of becoming type 3 c if you have pancreatitis.
All this is a guess though as I am saying could be .
So I would call your Gp and get reassured you cannot continue not knowing,
But I would hope and pray if you were Type 1 they would not leave you dangling like this.

 

[DodgyScotsman]

If you have the NHS app, you should be able to see your blood test results hopefully @DodgyScotsman The C Peptide would be particularly interesting as it shows how much insulin your body is producing. There are charts online that indicate what the level might suggest.

Type 1 often comes on more slowly in adults, and this is what some people call LADA/Type 1.5. Early introduction of insulin is thought to help preserve the remaining insulin-producing cells longer. My consultant doesn’t use the term really as it can mean different things to different people.

Do you test your blood sugar at home? If not, I would do. I’d do systematic testing to see exactly what’s happening. As an example, when I was first diagnosed with Type 1, I was still making some of my own insulin, but it was too late and sometimes too much. I experimented with omitting my insulin (not a thing I recommend) and I then saw that my blood sugar would go up to the 13s after breakfast but by before lunch it had come down to around 3.7. However, my consultant explained that that would be taxing my own islets and that I should take insulin, which I did. I wonder if your HbA1C is being similarly affected - highs being hidden by lower ‘rebounds’?

I do not have the app and not even sure how to go about accessing it.

I have similar readings when doing my own tests at home, a kit was provided by my diabetic Doctor. Sometimes it’s oddly high and other times I can eat a full dinner and sweet snack afterwards and it will be low. For instance yesterday I ate a quick microwave dinner of spaghetti bolognaise and afterwards had two celebrations (a twix and mars one) yet less than 2 hours later I was 6.8.

My doctor said it could be quick or even a few years before something happens but when it does I would need insulin. I have a long family history of diabetes both type 1 and 2.

 

[DodgyScotsman]

Hi. Welcome.
Okay, I am definitely confused because I feel you have so much said to you and nothing to go on. I would go back and say you need to know.
If you have diabetes you need to know the type you have. If type one I think you would be on insulin.
I am with leadinglights that type 2 has different managing techniques depending on each individual. i doubt your HBA1c is 60 or they may have given you Metformin.
My guess is you are prediabetic and they are keeping an eye on it.
You could be at risk of becoming type 3 c if you have pancreatitis.
All this is a guess though as I am saying could be .
So I would call your Gp and get reassured you cannot continue not knowing,
But I would hope and pray if you were Type 1 they would not leave you dangling like this.

Im definitely not prediabetic as I’ve been told I am diabetic by my GP, my diabetic Doctor and other doctors when I was in hospital. Type 3 has been ruled out from the CT scan.

I was basically told I’m running out of insulin and eventually stop producing it and that then I would insulin.

 

[helli]

I do not have the app and not even sure how to go about accessing it.

You can download it from the app store on your phone.
I think you may need your NHS number of login first time.
Then you can order repeat prescriptions and see your NHS record including results of tests.
Some surgeries also allow you to book appointments through the app.

 

[DodgyScotsman]

You can download it from the app store on your phone.
I think you may need your NHS number of login first time.
Then you can order repeat prescriptions and see your NHS record including results of tests.
Some surgeries also allow you to book appointments through the app.

Apparently this isn’t available in Scotland. Thanks for the help though.

 

[helli]

Apparently this isn’t available in Scotland. Thanks for the help though.

Wow! That seems shocking to me when I have been accessing my results online through the app for years. I am sure it must help the GP surgeries because they don't get hassled by me (and others like me) phoning up whenever I have blood test.
I see you have the NHS 24 Online app in Scotland but it looks like a shadow of the one we have in England.

 

[Nayshiftin]

Im definitely not prediabetic as I’ve been told I am diabetic by my GP, my diabetic Doctor and other doctors when I was in hospital. Type 3 has been ruled out from the CT scan.

I was basically told I’m running out of insulin and eventually stop producing it and that then I would insulin.

So just wait to call emergency services out when you go hypo. It all sounds bizarre especially as you are aware of it and it runs in the family. I don't have as good results as you and I don't get to eat sweets or highcarb meals but guess I have no idea. As I say to do nothing and insulin is to bring it down not to make you have high blood sugars so yes baffled or as a Scot bamboozled,

 

[helli]

So just wait to call emergency services out when you go hypo.

Some with untreated diabetes will not go hypo.
The risk is DKA.

@DodgyScotsman that reminds me - it would probably be a good idea to get some ketostix from your pharmacist.
The risk of high BG with Type 1 is DKA, Diabetic Ketoacidosis which can be very bad as your body produces ketones.
So, if you start to feel unwell, you can test your ketone level with the ketostix.

 

[DodgyScotsman]

Some with untreated diabetes will not go hypo.
The risk is DKA.

@DodgyScotsman that reminds me - it would probably be a good idea to get some ketostix from your pharmacist.
The risk of high BG with Type 1 is DKA, Diabetic Ketoacidosis which can be very bad as your body produces ketones.
So, if you start to feel unwell, you can test your ketone level with the ketostix.

Thanks I got some already from the doctor and only needed to use them twice with a reading of 0.4 and 0.1.

 

[AndBreathe]

Apparently this isn’t available in Scotland. Thanks for the help though.

In Scotland there is definitely MyDiabetes, which stores all your tests and so on, and can convert them into graphs and all sorts, so that the individual can see what's going on trending - better or worse.