Type 1 for 13 years

[Was81]

I’ve been a type 1 for 13 years diagnosed when I was 33. I have always had tight control and my last two HB1c have been 41 after a slip in control over Covid lockdown.

I’ve been using Libra for the past 10 months and this has been a game changer for me and I’m between 85% -90% on range over 90 days/most of the time. All good I’m steely proud of myself and the hard work I put in to keep my control tight. I do a lot of insulin to do this and keep on top of if.

4 weeks ago I saw a new constant who felt my back ground on how I was diagnosed and my tight control indicated to him that perhaps I’m not type 1. He did a new type of test and results say I’m no type 1 but type 2.

This has been a big shock and one I can’t accept or believe as I know how hard I work to keep control and how much insult I used to do this.

Help!! Thoughts on this? Can it be right??

 

[rebrascora]

Hi and welcome.

Sorry to hear that there is some confusion over your initial diagnosis and this is understandably causing you to feel unsettled.
Tight control is not about using lots of insulin, it is about using the right amount of insulin for you. However, it is common for Type 2 diabetics who are insulin dependent to need quite a bit more insulin than Type 1s due to insulin resistance. It is however possible to be Type 1 and have increased insulin resistance, especially if you are carrying excess weight, so it is almost like being Type 1 and Type 2 and in that situation they sometimes suggest people use Metformin alongside insulin to help manage their diabetes. I don't know if this might be the case with you. Do you know which tests they have done? The two tests for Type 1 are usually a C-peptide test which measures the amount of insulin your own body is able to produce and an antibody test. Sometimes it is just a GAD antibody test but there are other antibodies associated with Type 1 diabetes. Unfortunately antibodies "fade" with time from diagnosis and if you were diagnosed 13 years ago then there might not be many antibodies still being produced, so the longer the test is done from diagnosis the less conclusive it is.

Which insulins do you use? Would you like to give us an idea of how many units of each you use a day?
Have they suggested what the benefit might be in you being reclassified? Are they suggesting that you perhaps don't need insulin, which seems odd if you are on very high doses, but it depends I suppose as to how many carbs you eat and if there is room to lose weight and modify your diet so that you don't need so much or any at all. It would depend how much insulin your own body is able to produce, so a C-peptide test might be helpful to clarify that. There are certainly cases of people who are Type 2 and on insulin, modifying their diet and being able to stop not just the insulin but other meds too and just managing it through lifestyle changes, and when I was first diagnosed Type 2, that was my goal until the tests showed I was Type 1, so there are positives to being reclassified in that you perhaps have a chance to push it into remission if you are Type 2 although you have a better chance doing so early on after diagnosis rather than more than a decade down the line, but the injected insulin might have allowed your own beta cells to cope better rather than get burned out, so I guess a C-peptide test might be crucial.
Knowing which tests have been done and what the actual results were (not a positive or negative but numerical results) will be important in understanding the situation and if necessary challenging it.

Would you like to tell us a bit about how your initial diagnosis came about? .

 

[Was81]

Hi - I was diagnosed after loading 3 stone and having Ketones in urine. No history of diabetes in my family.

I’m on NovoRapid and doing 60/80 units throughout the day and Tresiba doing 80 units each evening.

I eat decently could improve like most people and I could do with losing a stone or two (working on this at the moment) - I go to gym 3/4 times a week and avoid carbs as much as I can.

I’m not sure what test I’ve not see the results on the NHs app yet and I’ve not had the letter from the consultant yet just a phone call saying type 2 and he wants to talk to me about my treatment forward.

 

[Inka]

That’s a lot of insulin @Was81 I can understand why they’re considering Type 2 despite your initial weight loss and ketones.

 

[Was81]

That’s a lot of insulin @Was81 I can understand why they’re considering Type 2 despite your initial weight loss and ketones.

It’s just I do not understand the move to type 2 given what I’m having to do to keep in range like I am

 

[rebrascora]

So do you actually carb count to calculate your NR injections or are you on fixed doses? If carb counting, what ratios do you use. As @Inka says, those are high doses of both basal and bolus insulin especially as you say you don't eat many carbs. It is possible that you are both Type 1 and Type 2 unless the C-peptide test was done and shows you are making plenty of insulin yourself.

I think you have to start off by finding out which tests were done and what the results were. Then you need to compose a list of questions for the consultant. An appointment is your opportunity to ask questions not just for the doctor or nurse to tell you what they think.

 

[Inka]

Some Type 2s work hard to stay in range @Was81 Any change in diabetes Type wouldn’t be a criticism of your efforts. The amount of insulin you’re taking is pretty high, especially the Novorapid. That suggests insulin resistance, which is connected to Type 2.

 

[rebrascora]

It’s just I do not understand the move to type 2 given what I’m having to do to keep in range like I am

Can you give us an idea of the things you need to do to keep in range?

It must be very frustrating and anxious for you to have this sudden uncertainty suddenly thrown up.

When you had this new test, was it a blood or urine test and did you have to do any special preparation for it, like eating a meal without NovoRapid so that your levels were high when the test was done.

 

[Was81]

Can you give us an idea of the things you need to do to keep in range?

It must be very frustrating and anxious for you to have this sudden uncertainty suddenly thrown up.

When you had this new test, was it a blood or urine test and did you have to do any special preparation for it, like eating a meal without NovoRapid so that your levels were high when the test was done.

I’m not sure I do a thing special I watch what I eat, i plan my meals so I know what insulin to take and I try and take this 45 mins before I eat so o do not spike and stay in range / sometime I have a hypo but generally I’m ok. If I do spike I may do 5/10 units to immediately get back in range.

It was a blood test and urine tests and it was not prepped for and I waited 10 months to see him as May last year my hb1c crept up to a 60 ish I ended up seeing nurse who helped e understand how insulin worked and changed my long acting and now I’m a 41 hb1c.

I don’t know what to think i just don’t want to go backwards

 

[Inka]

You won’t go backwards. You’d stay on insulin, I presume, and only your diabetes type would change.