Confused whether Type 1 or Type 2

[silverbirch]

Hi everyone and a Happy New Year to you. I have just paid a visit to an emergency Doctor today with an eye infection, (Blepharitis), my own fault but hey. The query I have is when I was first diagnosed with Diabetes I was told it was Type2. Put on Metformin and plodded along. Went back to GP numerous times and was in trouble because my BS was so high. The nurse tested me for Ketones and was shocked it was ++++ on the urinalysis scale. I was sent for a blood test to measure GAD which came back as +2000 and was then diagnosed with Type1. Now the problem I have is that my medical notes have not been changed to this effect, so I am treated as T2. I have asked on numerous occasions for it to be changed and they say that it has been done but the GP I saw today said your notes are saying you are down as T2. Now I have been on a DAPHNE course, which is for T1 only and also had DKA whilst in hospital having a hip replacement. I also inject before meals. How can these two events happen if I'm T2. How do I get my GP to change my notes or should I change to another Practice. Sorry for the long post and hopefully someone here will have an answer. Thank you for reading.

 

[lovinglife]

How concerning for you, I agree your records need to be changed. Maybe make an appointment with the practice manager to see if they can help you. If that fails you could contact PALS

 

[searley]

It may have been changed

I was diagnosed as t2 then years later changed to t1

My medical record had been changed, but there are still mentions of T2

Even just a few weeks ago my cardiologist was going to prescribe meds for me as a t2 as he fast read the notes and saw T2

Next time you talk to your gp just check he has you listed as t1.. but just be cautious as anyone skip reading may only see t2

 

[Hopeful34]

If you're being seen by a hospital diabetes clinic, I'd suggest asking them to write to your gp.

 

[silverbirch]

If you're being seen by a hospital diabetes clinic, I'd suggest asking them to write to your gp.

That’s a brilliant idea. Never thought of that. I’ll ask at my next appointment. Thank you.

 

[silverbirch]

How concerning for you, I agree your records need to be changed. Maybe make an appointment with the practice manager to see if they can help you. If that fails you could contact PALS

Thank you for agreeing that my records should be changed. I was thinking I had got it wrong somewhere. I shall report back when I, hopefully, get it changed.

 

[silverbirch]

It may have been changed

I was diagnosed as t2 then years later changed to t1

My medical record had been changed, but there are still mentions of T2

Even just a few weeks ago my cardiologist was going to prescribe meds for me as a t2 as he fast read the notes and saw T2

Next time you talk to your gp just check he has you listed as t1.. but just be cautious as anyone skip reading may only see t2

Thank you for your reply. Reading that your cardiologist was going to prescribe meds believing you're T2 is my main concern. Yes I understand that T2 diagnosis has to remain on my records but T1 should be the first thing that other medical professionals see. It has the ability to become a dangerous outcome otherwise.

 

[silverbirch]

UPDATE AS TO WHETHER TYPE 1 OR TYPE 2: I had an appointment with the Diabetes nurse yesterday to confirm whether I'm T1 or T2. The nurse said and I quote "I haven't got a clue, but it doesn't matter because you are on insulin anyway. I said I was having a lot of hypo's, she said we'll draw up a plan.. Do not inject any Novorapid before any of your meals for 1 week, just inject your Tresiba and reduce it to 16 units. She has now put me down as T2, (strange as she said she didn't have a clue).
I'm thinking it could even be T1.5. Should I be worried? Does it matter if I'm T1 T1.5 or T2? Do people with T2 diabetes have DKA?

 

[dancer]

@silverbirch I would like to say that I think your DSN is an idiot, but that would be unfair as I don't know the whole story.
When were you rediagnosed Type 1 and given insulin?
Have you been making adjustments to your own insulin doses since then, or relying on the DSN's advice?
Have you been having hypos morning, noon and night? Did you try reducing your insulin doses to prevent more hypos?

I would want to know what type of diabetes I had, especially if the prescription for medication for other medical conditions was different for Type 1 and Type 2 patients.

I presume you must be on very low amounts of Novorapid for each meal, otherwise your DSN wouldn't have told you to stop taking it. If this is not the case, I would not be happy to following her advice, but that's me.
I know nothing about Tresiba, so can't comment on it.

 

[silverbirch]

@silverbirch I would like to say that I think your DSN is an idiot, but that would be unfair as I don't know the whole story.
When were you rediagnosed Type 1 and given insulin?
Have you been making adjustments to your own insulin doses since then, or relying on the DSN's advice?
Have you been having hypos morning, noon and night? Did you try reducing your insulin doses to prevent more hypos?

I would want to know what type of diabetes I had, especially if the prescription for medication for other medical conditions was different for Type 1 and Type 2 patients.

I presume you must be on very low amounts of Novorapid for each meal, otherwise your DSN wouldn't have told you to stop taking it. If this is not the case, I would not be happy to following her advice, but that's me.
I know nothing about Tresiba, so can't comment on it.

@dancer, thank you for your reply to my question.
I was never rediagnosed as Type 1, even though the nurse said you're T1, I was diagnosed in 2013 as Type 2 and it has stayed Type 2 since then.
The Metformin wasn't working and I was put on Insulin, (Levemir and Novorapid).

My surgery notes have always said T2 diabetes, even though I tried to get this altered over the last 10 years.
Tresiba is a background insulin a bit like Levemir but longer lasting.

But and it's a big but, today I spoke to my GP, (hooray, at last I shouted). I told him the whole story from 2013 up until present day.
My GAD antibody test came back as >2000 and my C-Peptide test was abnormal, I also went into DKA, whilst in hospital. Based on those results that the GP could see on my notes he said you are Type1. It was a bittersweet moment. I wanted to be T2 so I could try and reverse it, but being formally diagnosed as T1 I am pleased as I have been trying for years to get this changed. I also asked him about the Diabetic nurse and her decision to stop taking Insulin before meals He said it was ok. Bit surprised as they tell you to keep you bs down but hey ho. I am seeing her this Tuesday and he said it would be ok. I take 1 unit of Novorapid for 10 carbs of food. I don't know if that is low or normal. Hope this explanation is clear.

 

[Kiwigal]

What a very long journey for your diabetes.

Hopefully this time it will be the start on correct Type 1 Diabetes diagnosed... and no more of Type 2 Diabetes.

Guess you will find out when you see that Diabetic Nurse soon for a appointment.

 

[searley]

Thank you for your reply. Reading that your cardiologist was going to prescribe meds believing you're T2 is my main concern. Yes I understand that T2 diagnosis has to remain on my records but T1 should be the first thing that other medical professionals see. It has the ability to become a dangerous outcome otherwise.

Actually if the read the medical record in chronological order they would see T1 first

But when you watch them on the computer they just skip read very fast and may miss certain things

I think it’s an error in the way the records present themselves as there is no real ‘current’ or ‘active’ conditions

I’ve had it in the past during a medical where I told them I was hospitalised due to a suspected heart attack and it took them 15minutes to find evidence of it

I think it’s a case that the system is not totally fit for purpose..

 

[silverbirch]

Actually if the read the medical record in chronological order they would see T1 first

But when you watch them on the computer they just skip read very fast and may miss certain things

I think it’s an error in the way the records present themselves as there is no real ‘current’ or ‘active’ conditions

I’ve had it in the past during a medical where I told them I was hospitalised due to a suspected heart attack and it took them 15minutes to find evidence of it

I think it’s a case that the system is not totally fit for purpose..

@searley: Have to agree with you there, the system doesn't work. When you think that GP's only have 10 minutes consultation time it's not surprising that they have to skip through your notes. It's unnerving to think that the Govt have authority over how the NHS should be conducted and that they think 10 minutes is enough time. It's fortunate for the medical profession that we know our bodies more than they do and therefore can avert a crisis.

 

[silverbirch]

Hi everyone, and thank you for continuing this long journey with me. I saw the Diabetic nurse yesterday and gave her my results of bs that she asked me to keep. She looked at them and said Oh! I didn't expect them to be that high, (I did, you took me off bolus insulin, of course that would happen), you were having hypo's, she said, so that's a surprise. I said well it would be those result as I'm T1. She said it doesn't matter if you're T1, or T2 you are on insulin. What concerns me is her thinking that it doesn't matter if you're T1 or T2. Is she right?
Thank you for reading

 

[Chris24Main]

Like many things with Diabetes - the answer is usually that it's more complicated - in this case both generally and specifically.

If you start with the assumption that all diabetes is about controlling blood glucose, and that T1 is a sudden and total loss of control, whereas T2 is a slow, progressive degeneration through stages of different meds until you end up taking insulin - through that lens you can see that there would be a perception that - If you are taking insulin, it's irrelevant whether you have type 1 or 2.

But - that perspective is both fairly pervasive, and a little out of date.
Typically - type 1 can create no insulin, where type 2 is characterised by too much circulating insulin, just not using it properly.
Then - there really isn't any "typical" - we are all highly unique in terms of our metabolism, the condition of our pancreas and the rest of our endocrine system. It's often too much to try to figure out, so in many cases, the standard treatment settles on matching insulin to glucose levels.

So - for a type 1 and type 2 - insulin is critical, but the way you approach it is really quite opposite.

A different way of thinking about it is that injected insulin will drive blood glucose low - and this applies to anyone; so from that perspective, the risk of hypos is the same for anyone receiving too much insulin by injection.

none of that should directly affect what you do, but may help you to deal with what you are being told...

 

[silverbirch]

Chris24Main, thank you for your explanation, it makes sense. My thinking was that DKA is less common in type 2 diabetics compared to type 1 diabetics because they are thought to be insulin resistant rather than insulin deficient and this would affect how you are treated in hosptal for instance. But, as you say we are all different. As long as we take the amount of insulin we need personally no one will know whether you're 1 or 2, except for the medical profession who usually ask. Think I've come to the end of this post of Confused whether Type 1 or Type 2. Thank you everyone for contributing answers to my post. It's much appreciated.

​

Like many things with Diabetes - the answer is usually that it's more complicated - in this case both generally and specifically.

If you start with the assumption that all diabetes is about controlling blood glucose, and that T1 is a sudden and total loss of control, whereas T2 is a slow, progressive degeneration through stages of different meds until you end up taking insulin - through that lens you can see that there would be a perception that - If you are taking insulin, it's irrelevant whether you have type 1 or 2.

But - that perspective is both fairly pervasive, and a little out of date.
Typically - type 1 can create no insulin, where type 2 is characterised by too much circulating insulin, just not using it properly.
Then - there really isn't any "typical" - we are all highly unique in terms of our metabolism, the condition of our pancreas and the rest of our endocrine system. It's often too much to try to figure out, so in many cases, the standard treatment settles on matching insulin to glucose levels.

So - for a type 1 and type 2 - insulin is critical, but the way you approach it is really quite opposite.

A different way of thinking about it is that injected insulin will drive blood glucose low - and this applies to anyone; so from that perspective, the risk of hypos is the same for anyone receiving too much insulin by injection.

none of that should directly affect what you do, but may help you to deal with what you are being told...

Chris24Main, thank you for your explanation, it makes sense. My thinking was that DKA is less common in type 2 diabetics compared to type 1 diabetics because they are thought to be insulin resistant rather than insulin deficient and this would affect how you are treated in hosptal for instance. But, as you say we are all different. As long as we take the amount of insulin we need personally no one will know whether you're 1 or 2, except for the medical profession who usually ask. Think I've come to the end of this post of Confused whether Type 1 or Type 2. Thank you everyone for contributing answers to my post. It's much appreciated.

​

 

[EllieM]

What concerns me is her thinking that it doesn't matter if you're T1 or T2. Is she right?

I would argue that she isn't. Ignoring @Chris24Main 's points about the role of insulin in the two types, T1s get better access to diabetic tech (pumps, cgms, hospital consultants etc) than T2s , so if you are going to be on insulin with no hope of coming off via diet or medication, you are better off with the formal T1 diagnosis (at least with the current rules in the UK).

 

[Michael_Partridge]

I would argue that she isn't. Ignoring @Chris24Main 's points about the role of insulin in the two types, T1s get better access to diabetic tech (pumps, cgms, hospital consultants etc) than T2s , so if you are going to be on insulin with no hope of coming off via diet or medication, you are better off with the formal T1 diagnosis (at least with the current rules in the UK).

Additionally I find that many/most medical professionals know nothing about T3c. After pancreatic surgery I am 3c but GP practice insist as not T1 must be T2.

Michael

 

[Lissia]

UPDATE AS TO WHETHER TYPE 1 OR TYPE 2: I had an appointment with the Diabetes nurse yesterday to confirm whether I'm T1 or T2. The nurse said and I quote "I haven't got a clue, but it doesn't matter because you are on insulin anyway. I said I was having a lot of hypo's, she said we'll draw up a plan.. Do not inject any Novorapid before any of your meals for 1 week, just inject your Tresiba and reduce it to 16 units. She has now put me down as T2, (strange as she said she didn't have a clue).
I'm thinking it could even be T1.5. Should I be worried? Does it matter if I'm T1 T1.5 or T2? Do people with T2 diabetes have DKA?

 

[Ashintheuk]

@dancer, thank you for your reply to my question.
I was never rediagnosed as Type 1, even though the nurse said you're T1, I was diagnosed in 2013 as Type 2 and it has stayed Type 2 since then.
The Metformin wasn't working and I was put on Insulin, (Levemir and Novorapid).

My surgery notes have always said T2 diabetes, even though I tried to get this altered over the last 10 years.
Tresiba is a background insulin a bit like Levemir but longer lasting.

But and it's a big but, today I spoke to my GP, (hooray, at last I shouted). I told him the whole story from 2013 up until present day.
My GAD antibody test came back as >2000 and my C-Peptide test was abnormal, I also went into DKA, whilst in hospital. Based on those results that the GP could see on my notes he said you are Type1. It was a bittersweet moment. I wanted to be T2 so I could try and reverse it, but being formally diagnosed as T1 I am pleased as I have been trying for years to get this changed. I also asked him about the Diabetic nurse and her decision to stop taking Insulin before meals He said it was ok. Bit surprised as they tell you to keep you bs down but hey ho. I am seeing her this Tuesday and he said it would be ok. I take 1 unit of Novorapid for 10 carbs of food. I don't know if that is low or normal. Hope this explanation is clear.

DKA in a T2 is the inablility of the cells in the organs to absorb glucose transported around in the bloodstream because they aren't responding to the insulin also circulating (otherside known as insulin resistance). DKA in a T1 is because the pancreas isn't making any insulin, and so the blood glucose can't again pass into the cells.
When this happens, the cells consume themselves to stay alive, but this comes at a price and that is the production of ketones.
Both my father and sister have gone DKA and needed hospitalisation, both diagnosed and treated as T2. I suspect a combination of poor pancreatic function and some insulin resistance.