Type 1 or type 2?

[Colleen Howe]

Hi everyone. I'm newly diagnosed diabetic after going to hospital with high blood sugar (24.6) and ketones (3.3). I also for the 2 weeks before hand was really thirsty and lost about a half stone in weight. I have to wait for blood results to have full diagnosis confirmed. But Dr said he thinks type 1 so treating me with both long acting and rapid insulin. But just off phone from the nurse (I'm back home now), and she telling me it sounds like type 2. So I'm feeling really confused.

 

[Antje77]

Hi everyone. I'm newly diagnosed diabetic after going to hospital with high blood sugar (24.6) and ketones (3.3). I also for the 2 weeks before hand was really thirsty and lost about a half stone in weight. I have to wait for blood results to have full diagnosis confirmed. But Dr said he thinks type 1 so treating me with both long acting and rapid insulin. But just off phone from the nurse (I'm back home now), and she telling me it sounds like type 2. So I'm feeling really confused.

Did the nurse tell you why she thought it was likely to be T2?
Unexpected weight loss, ketones and blood glucose as high as 24 are all pointers for a possible T1, although none of those rule out T2.

Do you know if the nurse was conveying what the doctor told her because of blood tests, or did she just speak her own mind without having new information?

Either way, I wish you all the best with getting used to this diabetes thing!

 

[SueJB]

Hello @Colleen Howe
I know how you feel, don't fret, everything becomes clearer so there's no need to worry. Here's a hug. ((((((hug)))))
When I was first diagnosed, BG 13 something, ketones nearly 5 or could have been more and had lost 17k. They decided my condition should be treated "aggressively" ie insulin. Further blood tests showed T1 but a nurse phoned me as a follow up to my appointment and was less than helpful in fact down right fatalistic. My advice is be wary, ask lots of questions and check as , @Antje77 says, where the info has come from. There are lots of excellent diabetic specialist nurses and some who are not in the same league. Welcome to the group too.

 

[Colleen Howe]

Hello @Colleen Howe
I know how you feel, don't fret, everything becomes clearer so there's no need to worry. Here's a hug. ((((((hug)))))
When I was first diagnosed, BG 13 something, ketones nearly 5 or could have been more and had lost 17k. They decided my condition should be treated "aggressively" ie insulin. Further blood tests showed T1 but a nurse phoned me as a follow up to my appointment and was less than helpful in fact down right fatalistic. My advice is be wary, ask lots of questions and check as , @Antje77 says, where the info has come from. There are lots of excellent diabetic specialist nurses and some who are not in the same league. Welcome to the group too.

Thank you.

 

[Colleen Howe]

Did the nurse tell you why she thought it was likely to be T2?
Unexpected weight loss, ketones and blood glucose as high as 24 are all pointers for a possible T1, although none of those rule out T2.

Do you know if the nurse was conveying what the doctor told her because of blood tests, or did she just speak her own mind without having new information?

Either way, I wish you all the best with getting used to this diabetes thing!

Hi. She was saying it because my blood sugar still in double figures. Between 13 and 20. Even though I've been on 20 units of slow release insulin a day, and 10 units of rapid insulin before meals. I'm not sure I follow why the blood sugar levels still being high is an indication though. I only started insulin Thursday. She can't say what type I have for certain, she just thinks it looks like type 2. Sorry for waffling.

 

[Antje77]

Waffle to your hearts content, @Colleen Howe , having a place to do that is one of the important things of a forum like this!
Getting diagnosed with a complex condition is very bewildering and for most of us that means having your mind go in all directions. Just ask away with whatever comes to mind or vent your frustrations

I'm not sure I follow why the blood sugar levels still being high is an indication though.

Neither do I. I'd wait for the opinion of your doctor.
Just this week someone in a Facebook group for people who were diagnosed with T1 as adults asked how much insulin everybody needed per day. The answers ranged from 6 units to 300 units.

She can't say what type I have for certain

The relevant tests to find out are C-peptide, which tells you something about the amount of insulin you produce, and antibodies tests. The most common antibody is GAD but there are a couple of others as well.
Those tests usually take weeks to come back so they won't provide you with a quick answer.
Even if you get those tests, the results may be inconclusive, although in most cases they'll give you an answer.

It will be useful to get your consultant to provide you with the results from all blood tests. Are you under care from an endocrinologist or have you been sent back to your GP?

 

[Colleen Howe]

Waffle to your hearts content, @Colleen Howe , having a place to do that is one of the important things of a forum like this!
Getting diagnosed with a complex condition is very bewildering and for most of us that means having your mind go in all directions. Just ask away with whatever comes to mind or vent your frustrations

Neither do I. I'd wait for the opinion of your doctor.
Just this week someone in a Facebook group for people who were diagnosed with T1 as adults asked how much insulin everybody needed per day. The answers ranged from 6 units to 300 units.

The relevant tests to find out are C-peptide, which tells you something about the amount of insulin you produce, and antibodies tests. The most common antibody is GAD but there are a couple of others as well.
Those tests usually take weeks to come back so they won't provide you with a quick answer.
Even if you get those tests, the results may be inconclusive, although in most cases they'll give you an answer.

It will be useful to get your consultant to provide you with the results from all blood tests. Are you under care from an endocrinologist or have you been sent back to your GP?

 

[Colleen Howe]

Not sure tbh. But the tests were done while I was in hospital. So I assume the results go back to the endocrinologist I was under. But I'm not too sure. I guess I just have to have some patience. In the meantime try get my levels to something reasonable. Thank you so much

 

[Antje77]

But the tests were done while I was in hospital.

I wouldn't assume you've had those particular tests. Another good reason to ask for seeing your own test results.

I guess I just have to have some patience. In the meantime try get my levels to something reasonable.

Yup, patience is the key word! A diabetes diagnosis of whatever type is a marathon, not a sprint.
For now you've been put on a basal-bolus regime (the basal your long acting, the bolus your mealtime insulin). This is the standard treatment for T1 so I think you'd be best off assuming T1 for now and reading up on that. Even if it turns out to be T2 in the end, on this insulin regime T1 information is likely to be more relevant to your day to day issues at the moment.

Good luck!

 

[Colleen Howe]

Very true. Thank you for your advice.

 

[Daibell]

Hi. It sounds like your nurse is a bit clueless. Your weight loss and very high BS points to T1 and you need GAD and C-Peptide test to help confirm; that is about eh only way to do it. Having the insulin was good but as a result your BS readings shows nothing about your type. Taking more insulin would have given you a lower figure. GPs and DNs tend to assume T2 by default if you aren't young - NHS ignorance I'm afraid which I've been thru. Do ask for the two tests and BTW a negative GAD result does not prove you are T2; if a positive result it does prove T1.

 

[Colleen Howe]

Hi. Thank you for responding. I think it's not really because of my age. I think it's because I'm not getting a honeymoon period. I'm on high dose of insulin and my sugars still average mid to high teens. But I know what you saying. Until my results come back, there no way of knowing. Doctor in hospital has put me on type one treatment though as he thinks it looks more like type one when I was admitted. It's just blood sugar levels not responding to insulin the way nurse expects for type one. I just have to have patience and wait I guess. In meantime I'm going on two walks a day, and reducing carb intake further. Not really driving the numbers down though.

 

[Japes]

Hi. Thank you for responding. I think it's not really because of my age. I think it's because I'm not getting a honeymoon period. I'm on high dose of insulin and my sugars still average mid to high teens. But I know what you saying. Until my results come back, there no way of knowing. Doctor in hospital has put me on type one treatment though as he thinks it looks more like type one when I was admitted. It's just blood sugar levels not responding to insulin the way nurse expects for type one. I just have to have patience and wait I guess. In meantime I'm going on two walks a day, and reducing carb intake further. Not really driving the numbers down though.

Hello and welcome to the forum.

It took nearly a month for my blood sugars to come down when I first started on insulin, and I don't think that's unusual!

 

[Circuspony]

Took me about a month too. Diabetes nurse wanted them down slowly because it isn't good for your small blood vessels to suddenly reduce after running high for a long time.

GP practice nurse also thought I was T2 because I was in my 40s. A quick Google after seeing her made me think she was wrong but I ended up in A&E as a result. At least you're on insulin.

 

[Colleen Howe]

Thank you guys for letting me know how long it took you to get blood sugar levels down. Was getting really frustrated with myself for not getting them down quicker.

 

[searley]

Hi everyone. I'm newly diagnosed diabetic after going to hospital with high blood sugar (24.6) and ketones (3.3). I also for the 2 weeks before hand was really thirsty and lost about a half stone in weight. I have to wait for blood results to have full diagnosis confirmed. But Dr said he thinks type 1 so treating me with both long acting and rapid insulin. But just off phone from the nurse (I'm back home now), and she telling me it sounds like type 2. So I'm feeling really confused.

The initial signs would indicate type1 BUT

I was in a similar situation as you..

My gp my nurses everyone except my consultant told me I was type 1. My consultant ummed and arghed and said I’m type 2

So my medical record showed me as T2 for 10 years... this year I told the consultant if I’m type 2 I’m stopping insulin.. then ended up with a referral to the local hospital who did some testing and came back said no chance you are T1

So in the early stages there maybe some confusion relating to type.. give it a little time get things under control then start pushing the consultant for a definite answer

 

[Colleen Howe]

Thank you. I've also been reading about lada type. So now wondering which out of the three I have. Lol. Hopefully when I get test for antibodies back the doctor can tell me for sure.

 

[Daibell]

Thank you. I've also been reading about lada type. So now wondering which out of the three I have. Lol. Hopefully when I get test for antibodies back the doctor can tell me for sure.

Hi, just a reminder that the GAD test can be unreliable as it only tests for antibodies and there are other causes such as viruses that can cause beta cell death. The C-Peptide is more useful but GPs are only just beginning to understand that.

 

[searley]

I’ve never had gad antibodies which is why my consultant said T2. But everyone else said not all T1 show fad antibodies so it’s not conclusive

The cpeptide test show how much insulin you are producing so is more reliable unless you are in the honeymoon period and have a good day

 

[Colleen Howe]

Thank you guys for replying. I really appreciate it. X