Newly diagnosed with Type 2 but doctor said he couldn’t rule out type 1

[Burnzy83]

I’ve recently been diagnosed with Type 2 diabetes but my doctor just didn’t give me any confidence if he was completely sure about what type I was.
About a week ago I noticed my eyes going blurry almost instantly, I can see close up but struggled to see people from far away, then when I was driving home I really struggled to see the signs and registration plates on other cars. I noticed my legs being like jelly, pins and needles in my finger tips, getting things confused / mixed up and struggling to concentrate properly, urinating well more and being thirsty all the time.
Even though I know now it is diabetes at the time I just thought I was coming down with a bug or being run down at work or something and would wake up just feeling fine. After 2 days I didn’t wake up any better just got worse. Before this all happened I never had any symptoms they all just basically come within a couple of days.
Anyway I went to the doctors and they said it could be possibly diabetes and asked me to go for bloods. After receiving the results the doctors rang me back on the day after to say I needed to make an appointment with the doctor sooner rather than later.
I had my appointment with him yesterday, he took my weight, height and then did a urine sample. Then he asked me some questions about what symptoms I had been suffering. I then explained everything in detail.
He kept saying to me your blood sugar levels have come back really high and that I wasn’t overweight just slightly overweight, he said to me about 3 times ‘but you’re not that big, you’re not that big but your sugar levels are really high’! It was almost as if he didn’t know what to diagnose for me, then after a really long pause he says ‘ OK I’m going to say you’ve got type 2 diabetes’??? He said that he didn’t think just dieting would sort it so he said about taking tablets to see if the sugar levels would come down with these.
I do appreciate that sometimes it must be hard for doctors to diagnose if they’re u sure but I just wanted to know if there was any determining factors that could tell me the main differences between type 1 and 2?
My next appointment is in 2 weeks with a diabetes nurse, which will be my first appointment with her so I know I should find out more then but will she be able to tell me properly if it’s type 2 or type 1 with more tests?
As I write this now it’s a week after the first symptoms and my eyes seem to be getting worse, but only for long sighted not when something is right in front of my face. My legs feel like they keep going dead, I literally only have to lean down on my arm/hand/leg for a few seconds and it goes all pins and needles, tingly. I have never been this thirsty in my life going through water like it’s going out if fashion. I’ve instantly changed my diet to see if that helps.
I just have so many questions but have to wait until the nurse appointment.
At the moment my eyes are really worrying me , will they just get better once the tablets are working and I change my diet?? Will the nurse send me for an eye screening test ? Does everybody who gets diagnosed get asked to go for an eye screening test?
Could wearing my wife’s long distance glasses for driving damage my eyes even more before I have a screening test ? Should I not wear them just incase ?
How will I know if I’m type 2 or 1 if I feel my doctor wasn’t even sure ??
I’m soooo confused

 

[Burnzy83]

If someone did have type 1 diabetes , would a doctor be able to tell straight away ?

 

[Burnzy83]

I know I have just written an essay , apologies just have so many questions.
I am 34 years of age and the doctor also said to me, as he was making up his mind that type 1 is normally when you’re a lot younger in age, before he told me he was going with type 2, as if he made his decision that I was type 2 based on me being older.
Is this generally the case that type 1 is diagnosed at a much earlier age than 34. He said this to me before he diagnosed anything as if he just wasn’t sure?

 

[milesrf]

The tests needed to tell the difference between type 1 and type 2 are rather slow, so this is probably a guess based on which is more common at your age. It's likely to take a few weeks to complete those tests. Just to add to the confusion there's also type 1 and type 2 at the same time (sometimes called type 1.5 and sometimes called double diabetes).

 

[catapillar]

@Burnzy83 what is your BMI? What were your blood sugar levels on diagnosis? Were you tested for, and did you have, ketones? How is your diabetes being treated (what medication are you on)? Have you been given a means of testing your blood sugar and what levels are you seeing now?

Obviously, vision changes can be a symptom of diabetes, as blood sugar levels are returned to normal this can temporarily worsen vision. But once your eyes get accustomed to the normal blood sugar levels this will improve. Everyone with diabetes is invited to retinopathy screening.

The differences between type 1 and type 2: type 1 is an autoimmune disease where the immune system kills of the insulin producing beta cells in the pancreas, it is a lack of insulin, it is treated with insulin injections for life; type 2 is insulin resistance which can be caused by all sorts of lifestyle factors including weight, diet, sleep patterns/shift work, stress, or hormonal imbalances like PCOS, or medication like steroids, or it is just a very strongly genetic condition, type 2 is too much insulin, it can be treated with diet or oral medication.

An autoimmune disease can happen at any age. 1 in 5 type 1s are over 40 when diagnosed.

Tests to help in figuring out whether you have type 1 or type 2 are a cpeptide test (to see what your endogenous insulin production is looking like) and a GAD test (to see if you have the antibodies associated with autoimmune type 1). It should be remembered that these tests may not give a definitive answer as a newly diagnosed type 1 will have residual insulin production and 25% of type 1s are GAD negative, only a positive GAD test is definitive (GAD positive + diabetes = you definitely have type 1) but a negative GAD test doesn't necessarily mean you don't have type 1.

So your clinical picture on diagnosis can be more useful: type 1s are much more likely to be diagnosed with blood sugars over 20 or 30, to have ketones (it's very unusual for type 2s to have ketones on diagnosis), to have dramatic untried for weight loss pre diagnosis.

Just to add to the confusion there's also type 1 and type 2 at the same time (sometimes called type 1.5 and sometimes called double diabetes).

This isn't correct. Type 1.5 and "double diabetes" are two separate things. Type 1.5 is LADA, which is just type 1 with a long, strong honeymoon period. There is no particular insulin resistance with type 1.5. Double diabetes isn't actually clinically possible as if you are type 1 you cannot have the hyperinsulimia of type 2 because you can't produce any insulin. So you can't have type 1 and type 2 at the same time, but it is possible to be type 1 and have insulin resistance and that's what is called double diabetes.

 

[paulus1]

as above we need to know your blood results. if your symptoms are not improving do not wait to see the nurse. do you have your own meter to test your blood sugars if not get one. if your worried and cant get to see your doctor. go to the hospital. no one will complain if you do. have you been refereed to a consultant.

 

[oh_dear_me]

He kept saying to me your blood sugar levels have come back really high and that I wasn’t overweight just slightly overweight, he said to me about 3 times ‘but you’re not that big, you’re not that big but your sugar levels are really high’! It was almost as if he didn’t know what to diagnose for me, then after a really long pause he says ‘ OK I’m going to say you’ve got type 2 diabetes’??? He said that he didn’t think just dieting would sort it so he said about taking tablets to see if the sugar levels would come down with these.

That was exactly what happened to me! I didn't see the GP but the nurse just kept saying I wasn't what she expected...kept saying it over and over again while shaking her head! People can be thin or just slightly overweight and still get type 2 diabetes. I'm not sure what your results were but my hba1c was 109 when diagnosed earlier this year and 3 months ago it was 52. I'm trying to bring my levels down by diet even thought Metformin was offered.
It takes a long time to get your head round it all to start with doesn't it. I'm still learning and still battling on!
Good luck with it all and my advice is to read anything and everything you can find on diabetes and get as well informed as possible.

 

[woodywhippet61]

That was exactly what happened to me! I didn't see the GP but the nurse just kept saying I wasn't what she expected...kept saying it over and over again while shaking her head! People can be thin or just slightly overweight and still get type 2 diabetes. I'm not sure what your results were but my hba1c was 109 when diagnosed earlier this year and 3 months ago it was 52. I'm trying to bring my levels down by diet even thought Metformin was offered.
It takes a long time to get your head round it all to start with doesn't it. I'm still learning and still battling on!
Good luck with it all and my advice is to read anything and everything you can find on diabetes and get as well informed as possible.

Just gotta say that's an impressive fall in A1c.

 

[Burnzy83]

Thank you for your reply.
When I went the doctors he just measured my height and weight and took a urine sample.
He didn’t give me my BMI, blood sugar levels, didn’t mention anything about ketones or of I had been tested for this.
He just told me to make an appointment at reception for the diabetes nurse and that she would have more information.

With reading these messages I have just phoned my doctors to see if they can tell me my blood sugar levels and if they could tell me if I was tested for ketones.

They couldn’t tell me over the phone but whilst I was on the phone I asked was there an earlier appointment with the nurse just because I felt like things were getting a bit worse. Thank god they have a cancellation this afternoon at 14:30 with the nurse, so glad now I don’t have to wait 2 weeks to see somebody.
I will be able to ask her today all the questions I have.

 

[Burnzy83]

Also I was prescribed Metformin 1 a day for a week, then 2 everyday forever

 

[himtoo]

Hi @Burnzy83
do you have a blood sugar test meter and strips ??

has anyone told you what your blood sugar was tested at at the GP?


given your description of how you are feeling I would not wait until your next appointment.
I would ring 111 for some further advice

edit to add -- i see now you have a further appointment with the Diabetic nurse today -- fab news.

 

[Burnzy83]

Hi himtoo,

I’ve still not been told by anybody what my blood sugar levels are.

With having to wait 2 weeks for my first appointment with the nurse I have just phoned the doctors to ask if they could tell me the blood sugar levels but they couldn’t.

But whilst on the phone they had a cancellation for this afternoon , I have an appointment at 14:30 so hopefully I will get the stuff to test my levels. Or I.ll know where to get them from.

I’ve started to write all my questions down so hopefully I will know a lot more after the appointment.

Thank you

 

[Burnzy83]

@Burnzy83 what is your BMI? What were your blood sugar levels on diagnosis? Were you tested for, and did you have, ketones? How is your diabetes being treated (what medication are you on)? Have you been given a means of testing your blood sugar and what levels are you seeing now?

Obviously, vision changes can be a symptom of diabetes, as blood sugar levels are returned to normal this can temporarily worsen vision. But once your eyes get accustomed to the normal blood sugar levels this will improve. Everyone with diabetes is invited to retinopathy screening.

The differences between type 1 and type 2: type 1 is an autoimmune disease where the immune system kills of the insulin producing beta cells in the pancreas, it is a lack of insulin, it is treated with insulin injections for life; type 2 is insulin resistance which can be caused by all sorts of lifestyle factors including weight, diet, sleep patterns/shift work, stress, or hormonal imbalances like PCOS, or medication like steroids, or it is just a very strongly genetic condition, type 2 is too much insulin, it can be treated with diet or oral medication.

An autoimmune disease can happen at any age. 1 in 5 type 1s are over 40 when diagnosed.

Tests to help in figuring out whether you have type 1 or type 2 are a cpeptide test (to see what your endogenous insulin production is looking like) and a GAD test (to see if you have the antibodies associated with autoimmune type 1). It should be remembered that these tests may not give a definitive answer as a newly diagnosed type 1 will have residual insulin production and 25% of type 1s are GAD negative, only a positive GAD test is definitive (GAD positive + diabetes = you definitely have type 1) but a negative GAD test doesn't necessarily mean you don't have type 1.

So your clinical picture on diagnosis can be more useful: type 1s are much more likely to be diagnosed with blood sugars over 20 or 30, to have ketones (it's very unusual for type 2s to have ketones on diagnosis), to have dramatic untried for weight loss pre diagnosis.



This isn't correct. Type 1.5 and "double diabetes" are two separate things. Type 1.5 is LADA, which is just type 1 with a long, strong honeymoon period. There is no particular insulin resistance with type 1.5. Double diabetes isn't actually clinically possible as if you are type 1 you cannot have the hyperinsulimia of type 2 because you can't produce any insulin. So you can't have type 1 and type 2 at the same time, but it is possible to be type 1 and have insulin resistance and that's what is called double diabetes.

 

[Burnzy83]

@Burnzy83 what is your BMI? What were your blood sugar levels on diagnosis? Were you tested for, and did you have, ketones? How is your diabetes being treated (what medication are you on)? Have you been given a means of testing your blood sugar and what levels are you seeing now?

Obviously, vision changes can be a symptom of diabetes, as blood sugar levels are returned to normal this can temporarily worsen vision. But once your eyes get accustomed to the normal blood sugar levels this will improve. Everyone with diabetes is invited to retinopathy screening.

The differences between type 1 and type 2: type 1 is an autoimmune disease where the immune system kills of the insulin producing beta cells in the pancreas, it is a lack of insulin, it is treated with insulin injections for life; type 2 is insulin resistance which can be caused by all sorts of lifestyle factors including weight, diet, sleep patterns/shift work, stress, or hormonal imbalances like PCOS, or medication like steroids, or it is just a very strongly genetic condition, type 2 is too much insulin, it can be treated with diet or oral medication.

An autoimmune disease can happen at any age. 1 in 5 type 1s are over 40 when diagnosed.

Tests to help in figuring out whether you have type 1 or type 2 are a cpeptide test (to see what your endogenous insulin production is looking like) and a GAD test (to see if you have the antibodies associated with autoimmune type 1). It should be remembered that these tests may not give a definitive answer as a newly diagnosed type 1 will have residual insulin production and 25% of type 1s are GAD negative, only a positive GAD test is definitive (GAD positive + diabetes = you definitely have type 1) but a negative GAD test doesn't necessarily mean you don't have type 1.

So your clinical picture on diagnosis can be more useful: type 1s are much more likely to be diagnosed with blood sugars over 20 or 30, to have ketones (it's very unusual for type 2s to have ketones on diagnosis), to have dramatic untried for weight loss pre diagnosis.



This isn't correct. Type 1.5 and "double diabetes" are two separate things. Type 1.5 is LADA, which is just type 1 with a long, strong honeymoon period. There is no particular insulin resistance with type 1.5. Double diabetes isn't actually clinically possible as if you are type 1 you cannot have the hyperinsulimia of type 2 because you can't produce any insulin. So you can't have type 1 and type 2 at the same time, but it is possible to be type 1 and have insulin resistance and that's what is called double diabetes.

Thank you for your reply.
When I went the doctors he just measured my height and weight and took a urine sample.
He didn’t give me my BMI, blood sugar levels, didn’t mention anything about ketones or of I had been tested for this.
He just told me to make an appointment at reception for the diabetes nurse and that she would have more information.

With reading these messages I have just phoned my doctors to see if they can tell me my blood sugar levels and if they could tell me if I was tested for ketones.

They couldn’t tell me over the phone but whilst I was on the phone I asked was there an earlier appointment with the nurse just because I felt like things were getting a bit worse. Thank god they have a cancellation this afternoon at 14:30 with the nurse, so glad now I don’t have to wait 2 weeks to see somebody.
I will be able to ask her today all the questions I have.

 

[Pinkorchid]

Good that you have an earlier appointment hopefully she will be able to answer about your BG levels and say if you appear to be more T2 or T1 but I expect you will have to have more tests to finally decide that. Let us know how you get on .

 

[Burnzy83]

Hello !!
I’ve not replied for a few days just because I’m trying to get my head around things, apologies.

Went to see the diabetics nurse found out that my blood sugar level was 8.7% / (71mmol/mol) my first blood test. Found out a lot of information off the nurse that I feel better now for asking. I’m getting sent for an eye screening test which will tell me more about my eyes.

The nurse did ask me to find out whether I had diabetes in my family then that would give her a clearer idea of type 2 or 1.

She did a blood test there and then which come up as 16.5% and said to me this is clearly too high. I had the appointment at 14:30 in the afternoon but I hadn’t ate since before 2 hours previously so she was concerned about how high it was. She then told me she was putting me on 3 Metformin a day now as apposed to 2. She also gave me a prescription for a blood testing kit, strips, lancets and asked me to test every morning.

She told me about dieting and exercise but said to get in touch if my sugar levels go up or if I any of my symptoms get worse.

It is now roughly 2 weeks since I first started showing symptoms, before I went the doctors the very first time. Since that day I have completely ruled out sugar and ate healthy and regularly, drank water instead of any other drinks ( apart from an occasional cup of tea with 1 sweetener ).

The very next day after the nurses appointment I started testing my bloods in the morning as soon as I woke up, the next morning it was 14.4% when I woke up then as follows
Day 2 - 13.8%
Day 3 - 13.7%
Day 4 - 13.9%
Day 5 - 14.8%

I am now worried because my bloods are still high after completing changing everything I eat and drink. I have been taking 1 Metformin for nearly a week, and started taking 2 yesterday ( the nurse told me 1 a day for the first week, 2 a day the second then 3 a day from the third week).

In my self I do feel well better, my eyes feel like they are almost back to normal and generally feel better in myself ( this could be to do with the fact how much healthier I’m eating ). The only thing that I notice now is getting pins and needles if I lean down on my arms or hands within a matter of seconds and my feet and legs are still feeling numb and dead sometimes but other than that I do feel better.

It’s just so annoying that my bloods are still high after dramatically changing my food.

Am I better just waiting to see the longer I take Metformin to see if my bloods come down or just get in touch with the nurse now if my bloods are still too high?

Does anybody have any experience of this and did they eventually just go back down ?

 

[catapillar]

Hello !!
I’ve not replied for a few days just because I’m trying to get my head around things, apologies.

Went to see the diabetics nurse found out that my blood sugar level was 8.7% / (71mmol/mol) my first blood test. Found out a lot of information off the nurse that I feel better now for asking. I’m getting sent for an eye screening test which will tell me more about my eyes.

The nurse did ask me to find out whether I had diabetes in my family then that would give her a clearer idea of type 2 or 1.

She did a blood test there and then which come up as 16.5% and said to me this is clearly too high. I had the appointment at 14:30 in the afternoon but I hadn’t ate since before 2 hours previously so she was concerned about how high it was. She then told me she was putting me on 3 Metformin a day now as apposed to 2. She also gave me a prescription for a blood testing kit, strips, lancets and asked me to test every morning.

She told me about dieting and exercise but said to get in touch if my sugar levels go up or if I any of my symptoms get worse.

It is now roughly 2 weeks since I first started showing symptoms, before I went the doctors the very first time. Since that day I have completely ruled out sugar and ate healthy and regularly, drank water instead of any other drinks ( apart from an occasional cup of tea with 1 sweetener ).

The very next day after the nurses appointment I started testing my bloods in the morning as soon as I woke up, the next morning it was 14.4% when I woke up then as follows
Day 2 - 13.8%
Day 3 - 13.7%
Day 4 - 13.9%
Day 5 - 14.8%

I am now worried because my bloods are still high after completing changing everything I eat and drink. I have been taking 1 Metformin for nearly a week, and started taking 2 yesterday ( the nurse told me 1 a day for the first week, 2 a day the second then 3 a day from the third week).

In my self I do feel well better, my eyes feel like they are almost back to normal and generally feel better in myself ( this could be to do with the fact how much healthier I’m eating ). The only thing that I notice now is getting pins and needles if I lean down on my arms or hands within a matter of seconds and my feet and legs are still feeling numb and dead sometimes but other than that I do feel better.

It’s just so annoying that my bloods are still high after dramatically changing my food.

Am I better just waiting to see the longer I take Metformin to see if my bloods come down or just get in touch with the nurse now if my bloods are still too high?

Does anybody have any experience of this and did they eventually just go back down ?

Hba1c in the old schools DCCT format is given as % or in the new IFCC format as mmol/mol.
Blood sugar levels that you see on your monitor are not % they ar mmol/l.

You don't need a doctor to tell you your BMI. You just need to know your height and weight. There's a calculator that does it for you here - https://www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx

You say you've dramatically changed your food and ruled out sugar, but perhaps if you could give an example of your diet other people who manage their type 2 diabetes with diet and/or metformin may be able to offer advice on food choices.

 

[sin85]

First of all your doctor sounds like an idiot. You need a referral to an endocrinologist, who specialises in diabetes. You can get diabetes type 1 at any age. Just go to a and e say your not well and get seen by a proper consultant. The longer your sugars stay high the more damage to your body and organs. The doctor should have explained what levels your bs were at on your first visit, and if you had keytones. You could just buy a glucose monitor yourself too and check

 

[sin85]

Sorry I see you have been testing. You should also be checking for keytones, have you lost weight recently? Sounds like type 1 the thirst and frequent urination, blurred vision. Go to an endocrinologist to be sure

 

[Burnzy83]

Thanks for replying to me I appreciate it.

Using that BMI calculator mine is 27.3.

At the doctors I was 172cm and 81kg. As I put in the very first comment the doctor kept saying that I was only slightly overweight not that big ‍



For as long as I can remember before all this I was around 13stone to 13stone 7 roughly ( I don’t really weigh myself ). When the doctor weighed me I was 12 stone 7 (81kg) so I have lost weight but not a great deal maybe.

Since dieting like this I do feel like I’ve lost some in the past week but I suppose that’s only natural.

On a typical day since last week I’ve woke up and had 3 weetabix with warm skimmed milk with no sugar.

Then lunch had scrambled egg on 2 rounds of brown seeded toast.

Then for dinner had brown rice, chicken and broccoli, with gravy.

In between I’ve drank no sugared flavoured water, cups of tea with 1 sweetener.

Snacked on apples mainly, then inbetween meals ( roughly 2 hours after and 2 hours before meals )also ate belvita biscuits as a substitute for another meal just so I’m not going long times inbetween meals.

If I’m completely honest I haven’t done a lot of exercise. This is something I need to pick up on.

With working shifts in work I would eat a lot of white bread and go long times before eating. Always eating crisps, chocolate, sweets and drinking energy drinks inbetween.