Confused, Why my diabetes team won't take me off of insulin

[type2_2020]

I was diagnosed with Diabetes on the 9th May when my BG level was checked and reached 32.8, then after I lost consciousness and blacked out in the Urgent Care Centre. I woke up in hospital 3 days later hooked up by my foot and arms to insulin and glucose and antibiotics. I woke up confused and they had my privates hooked up to a machine to collect my urine. My privates was hurting each time i wanted to discharge so after a day i had enough and requested they take it off so I can discharge normally into the mini bucket they gave me so they can still monitor my wee.

My ketones were high so I had to so I had to stay for another couple of days. They were taking bloods like every 4 hours, and guess what I hate needles. Never have like them but because the doctor told me they almost lost me, once I regained consciousness, those needles were not going to agree with me, and i initially kept saying I can't do the needles, but they persisted and made sure they took my bloods right on time every 4 hours. Along with this was the finger prick tests for ketones and BG every 2 hours like clockwork.

I was discharged from hospital on the 15th May but they didn't want me to go until I could prove to them I can inject and my phobia of needles wouldn't get in the way, I was so happy to be alive, I saw my wife and was truly thankful to the hospital staff for saving my life. When I left hospital my BG was 19 and at that time I didn't understand what the BG numbers meant. So I was told to do some research into diabetes and I read the target range was 4 - 7, so I read everything I could find online on how to lower BG levels.

For the first week I was averaging 17 and I was losing sight with blurred vision, I immediately called the Diabetes team who said to me not to worry and do not go and buy glasses that it happening because I'm still high. At this moment I thought I do not want to go blind and was very scared. I asked them why don't they give me an insulin dose that will get me in range and they explained that they cannot bring me down too soon because they are worried I will have a hypo. So I thought if they aren't going to help me, I'm going to bring it down myself.

I started exercising everyday, I changed my diet to a keto diet and I was doing 10 on the BG meter and after exercise I was like 5. I was so happy because I bought it down on my own but I still didn't feel comfortable being at 10. So I changed my diet again to a low carb diet, removed all the stresses in my life and exercise regularly.

After 3 weeks I was ranging on average between 4 and 5. I asked my team what type of diabetes I have and they said they didn't know. Now after all the bloods they took in hospital, I would have thought they would have some clue but they didn't. So they ordered another blood test. I hate needles but by this time I was accustom to injecting 2 times a day with the mix insulin. I took the test and they decided that it was best for me to go to 3 injections a day of novo and 1 at night with lantus with very low dosages because I was suppose to be doing better than expected. The test came back and showed I had no antibodies which are associated with type 1, so I thought well I must be type 2 then.

A month later, middle of June, I then asked about A1C and was told they don't have a recent one, so yet again, I have to go for more bloods, this time i just wanted it over and done with, so went felt the injection, but braved it and in 1 minute it was done. It took weeks to come back and beginning of July I was told it was 96, I was in shock because I been steady at 4-5 on the meter, she then explained that this is over 3 months and that the cells regenerate every 3 months and if I'm doing so well it will show up on the next one I did. I was annoyed because here we go again with the big needles. I know i shouldn't complain about them but having to inject every day is somewhat helping my confidence with needles. During the call she also told me that a year before my A1C was taken and showed I had diabetes at that point. So I went an entire year not knowing and they knew I was and she apologised that no one had told me.

So this week I had my regular check up in the diary for the 10th but the team / doctor decided without talking with me on what's happening now, cancelling the meeting and just called me to tell me they want to put me on metformin. But I have to continue injecting but at 3 units instead of 6 for the novo and down to 18 units on the lantus at night and I will take metformin one a day. I was hoping to stop injecting insulin as they tests showed I'm producing insulin and my levels are stable. 6 BG is a high for me and I just don't understand why I'm not off insulin. I hate injecting, i really hate the needles, and just as my luck has it, I'm injecting 4 times a day 3 in the tummy and 1 in the leg.

What I don't understand is why the doctors didn't keep the appointment and see my evidence of low BG and see my lifestyle changes like the exercise I do 5 times a week riding up a 1 mile hill and riding for 6 miles, lifting weights and running is doing me good and I think I might be on the way to reversing this. When I spoke to the diabetes team they said they decided this was best for me because they can't be sure I'm type 2. They then started tell me about highs and ordered me a ketone meter, delivered today. I don't think they believe I'm doing so well.

On another note: My uncle also has diabetes type 2 and he's always high the lowest he's been is 8.9 and he exercises quiet a lot to try and get it down, I'm never this high, even when I had my first slice of cake at an event on saturday my high was 6.5.

Does anyone understand why they aren't taking me off insulin? Or is it they are whinding me off of it with the lower dosages? Confused.

 

[Daibell]

Hi. You need to ask for a C_Peptide test. The GAD antibody test isn't enough to eliminate T1. Viruses can cause beta cell destruction for example as well as rarer antibodies. Unless you are overweight you are likely to be T1.

 

[HSSS]

Got to say if you are definitely producing adequate insulin and there are no antibodies (not conclusive but a good indicator) it does make type 2 a possibility. There are forms of type 1 that are slower onset (LADA) and some rarer forms like Mody. If you’d been at diagnosable levels for more than a year this makes full blown typical fast onset type 1 less likely but maybe not the slow version. Keto can prolong the time a LADA can manage without insulin, and give normal levels for a time, but ultimately that’s the treatment

Do you know or can you get the details of what hb1ac levels you’ve had including the old one? And which tests (c peptide? Insulin? Gad?) they’ve done for type along with the units used and reference ranges? They might help someone make some sense of what’s happening. You are entitled to all these test results online or printed. They may be reluctant but it is your right. How is your weight? Type 2 tend to be overweight whilst type 1 can lose weight rapidly - not fixed rules but generalisations.

 

[EllieM]

I agree with the others, c-peptide is the test you need at this point. If you are slow onset T1 (LADA), which is what your treatment suggests they are assuming, then once insulin is injected you can go into a honeymoon period, where your own pancreas produces more insulin for a while because it is no longer under stress. Some LADA can come off insulin for a while if they go low carb, but normally the honeymoon eventually ends and they progress to insulin.

But yes, there is a possibility you are T2 (or even MODY which is a weird genetic variant that does not always need insulin) and if that is the case then there's a good chance you'll be able to come off insulin.

Congrats on managing your diet and exercise so well that you've normalised your sugar levels. I could be wrong, but I suspect you'll get more sympathy to your request for no insulin when your hba1c reflects your current levels. As you already know, insufficient insulin kills. But reducing your insulin doses and giving you a ketone meter are very good signs, they are not going to take any sudden medication decisions which risk another DKA, so they are gradually changing things.

Good luck and welcome to the forums.

 

[type2_2020]

Got to say if you are definitely producing adequate insulin and there are no antibodies (not conclusive but a good indicator) it does make type 2 a possibility. There are forms of type 1 that are slower onset (LADA) and some rarer forms like Mody. If you’d been at diagnosable levels for more than a year this makes full blown typical fast onset type 1 less likely but maybe not the slow version. Keto can prolong the time a LADA can manage without insulin, and give normal levels for a time, but ultimately that’s the treatment

Do you know or can you get the details of what hb1ac levels you’ve had including the old one? And which tests (c peptide? Insulin? Gad?) they’ve done for type along with the units used and reference ranges? They might help someone make some sense of what’s happening. You are entitled to all these test results online or printed. They may be reluctant but it is your right. How is your weight? Type 2 tend to be overweight whilst type 1 can lose weight rapidly - not fixed rules but generalisations.

I'm overweight, have been for 4 years now with a BMI of 38. Both my uncles have type 2, one died from diabetes in 1996 and the other got diagnosed last year. I'm hoping i'm type 2 because I know i can lose the weight and maintain this new lease of life and lifestyle as my aim every morning is to get into a remission state.

My previous A1C was 50 in May 2019, they just never told me until I almost died in May 2020. The consultant said to me he found my case interesting and strange, up to now i have no clue what he meant by that, i always wonder if he means because i'm 34 and family history with diabetes.

I'll ask for the results

 

[HSSS]

I'm overweight, have been for 4 years now with a BMI of 38. Both my uncles have type 2, one died from diabetes in 1996 and the other got diagnosed last year. I'm hoping i'm type 2 because I know i can lose the weight and maintain this new lease of life and lifestyle as my aim every morning is to get into a remission state.

My previous A1C was 50 in May 2019, they just never told me until I almost died in May 2020. The consultant said to me he found my case interesting and strange, up to now i have no clue what he meant by that, i always wonder if he means because i'm 34 and family history with diabetes.

I'll ask for the results

I really wish medical staff would actually tell people actual results and explain their random comments. Being vague just leaves us with so many more questions. I now take a list to all appointments/calls. Sometimes it actually comes out, sometimes it doesn’t but it helps me remember to ask all the questions I want answers to. Eg “why is my case interesting?”

 

[type2_2020]

I agree with the others, c-peptide is the test you need at this point. If you are slow onset T1 (LADA), which is what your treatment suggests they are assuming, then once insulin is injected you can go into a honeymoon period, where your own pancreas produces more insulin for a while because it is no longer under stress. Some LADA can come off insulin for a while if they go low carb, but normally the honeymoon eventually ends and they progress to insulin.

But yes, there is a possibility you are T2 (or even MODY which is a weird genetic variant that does not always need insulin) and if that is the case then there's a good chance you'll be able to come off insulin.

Congrats on managing your diet and exercise so well that you've normalised your sugar levels. I could be wrong, but I suspect you'll get more sympathy to your request for no insulin when your hba1c reflects your current levels. As you already know, insufficient insulin kills. But reducing your insulin doses and giving you a ketone meter are very good signs, they are not going to take any sudden medication decisions which risk another DKA, so they are gradually changing things.

Good luck and welcome to the forums.

Thanks, I'll call them today and ask to have that test done. I think it's important to know what i'm working with, so i can manage my expectations. I would hate for my BG levels to go up, Never heard of LADA or Mody, but you're right LADA is so similar to T2 they must be threading carefully to cope with either. Ideally I would like the guessing to stop. I've read many people on this forum being diagnosed with either T1 or T2 when they have their first diagnosis yet mine's in limbo.

 

[EllieM]

you're right LADA is so similar to T2 t

LADA is just the name for slow onset T1, which is how T1 tends to present in adults over 30ish. It's not really similar, other than the symptoms, because T2s typically over produce insulin and T1s under produce, but at the moment your treatment is working so they aren't in a hurry to change it. I suspect your case is interesting because your weight and family history suggest T2, but the speed of progression to DKA (which is rare in T2s) suggest otherwise. Plus your willingness to achieve diet /lifestyle changes to change things round is also relatively unusual.

 

[Circuspony]

I was diagnosed LADA T1 when I was 43. About a month after I first started on insulin my pancreas woke up and i had to drop my insulin dosages dramatically. Apparently that's quite common and seems to be some form of reaction to giving the beta cells a break by injecting insukin.

Sadly didn't last! But I'm 3 years on and still producing some insulin.

Whichever type of diabetic you are then weight loss and dropping the carbs can only help. Don't get too hung up on "type" - if you are a type 2 and can manage with diet then you'll drop down to tiny doses or no insulin in time, but if T1 then it's keeping you alive.

 

[xfieldok]

Are you keeping a record of your numbers along with everything you eat? It can be very helpful.

I used the mysugr app. Another alternative is the freestyle libre. It's expensive, asda cheapest at around £45. It doesn't eliminate the need for fingerpricks entirely. You may be given one by your practice but they are not generous with them.

 

[type2_2020]

Are you keeping a record of your numbers along with everything you eat? It can be very helpful.

I used the mysugr app. Another alternative is the freestyle libre. It's expensive, asda cheapest at around £45. It doesn't eliminate the need for fingerpricks entirely. You may be given one by your practice but they are not generous with them.

Yeah I keep a diary and my meter keeps the history on my smartphone. I use myfitnesspal app to keep track of my foods.

 

[JMK1954]

I just felt I had to say how much I admire your attitude and your efforts to get healthy again. Well done, sir! My husband needs to lose several stone and I just wish he had your determination. Good luck with your tests.

 

[xfieldok]

Yeah I keep a diary and my meter keeps the history on my smartphone. I use myfitnesspal app to keep track of my foods.

If you use the mysugr app you will get an estimated hba1c after a few days. It won't be accurate at first but it will show you trending. I found it invaluable when I first started. The app has a free version.

 

[type2_2020]

If you use the mysugr app you will get an estimated hba1c after a few days. It won't be accurate at first but it will show you trending. I found it invaluable when I first started. The app has a free version.

thanks will look it up

 

[type2_2020]

LADA is just the name for slow onset T1, which is how T1 tends to present in adults over 30ish. It's not really similar, other than the symptoms, because T2s typically over produce insulin and T1s under produce, but at the moment your treatment is working so they aren't in a hurry to change it. I suspect your case is interesting because your weight and family history suggest T2, but the speed of progression to DKA (which is rare in T2s) suggest otherwise. Plus your willingness to achieve diet /lifestyle changes to change things round is also relatively unusual.

Thanks I insisted on my appointment with the doctor today and just had it. He started off the conversation with your case is a mystery and unique. I asked him to explain what he meant by that.

He said "DKA is rare in T2 and you're overweight with a bmi of 38, your family history is in T2, you did a test for antibodies yet it came back as negative, But all your symptoms are all classic T1 and it's got us baffled". So they don't know what type I am because I'm displaying all the characteristics of both types.

So he suggested a c-peptide test which is what most of you said I'd need, but he was saying only after 3 years, I said can't we do one now, and he agreed it would be nice to have a baseline.

So i'm stuck in limbo, could be LADA or T2. I'm stressing out because I thought I was on the way to a full recovery but there's a 50/50 chance I will be injecting forever.

 

[EllieM]

So i'm stuck in limbo, could be LADA or T2. I'm stressing out because I thought I was on the way to a full recovery but there's a 50/50 chance I will be injecting forever.

If you are T2, you may be able to drop the medication, but you'll always be at risk of returning symptoms if you eat too many carbs. So I'd talk about remission rather than a cure.

And though T1s have to inject, in some ways they have more freedom than T2s, because they can inject for that piece of birthday cake or that pizza, whereas most drug free T2s can't ever dare to eat them.

So there's pros and cons. I actually don't have any issues with injecting insulin, I've been doing it for 50 years, it's the hypos I hate the most.

Anyway, you sound like you've got the right attitude to get on top of it, whichever type of diabetes it is. Good luck.

 

[ringi]

So he suggested a c-peptide test which is what most of you said I'd need, but he was saying only after 3 years

A very high result says its type2.
A very low result says its type1 or type3c, or a few other types
A middle of the road result says little and if in the first 3 years could still be type1

A low carb diet reduces blood inslin levels and hence reduces c-peptide results unless they give you lots of carbs before taking the blood.

Clearly your inslin levels were very low to make DKA a possibility, hence if you stop taking inslin, DKA is a risk unless they can find why your inslin levels were low and its a reason that is unlikely to repeat. But monitoring keystones and BG yourself can give enough time to get to A&E before a DKA sets in.

 

[Rokaab]

So i'm stuck in limbo, could be LADA or T2. I'm stressing out because I thought I was on the way to a full recovery but there's a 50/50 chance I will be injecting forever.

One thing I will say though is be thankful the doctors are considering it, many will just think 'oh they're over 30 that means T2' and there are quite a few on these forums who were misdiagnosed as T2 and ended up struggling for years and fighting to get the relevant tests and correct diagnosis - I think some even had to go privately to get them (but I may be imagining things).

 

[HSSS]

Thanks I insisted on my appointment with the doctor today and just had it. He started off the conversation with your case is a mystery and unique. I asked him to explain what he meant by that.

He said "DKA is rare in T2 and you're overweight with a bmi of 38, your family history is in T2, you did a test for antibodies yet it came back as negative, But all your symptoms are all classic T1 and it's got us baffled". So they don't know what type I am because I'm displaying all the characteristics of both types.

So he suggested a c-peptide test which is what most of you said I'd need, but he was saying only after 3 years, I said can't we do one now, and he agreed it would be nice to have a baseline.

So i'm stuck in limbo, could be LADA or T2. I'm stressing out because I thought I was on the way to a full recovery but there's a 50/50 chance I will be injecting forever.

That’s sounds like progress of sorts. A c peptide now might shed some light at this point if particularly high (T2) or low (T1) If it’s mid range it’s less clear cut.

Not sure why he says you’re classic type 1 and then says displaying both types which is more accurate. For sure dka is more common in type 1 and less common by far in type 2 but it does happen, especially when levels are very high as yours were. Antibodies are often present in type 1 but by no means always and there are lots of antibodies which they don’t always check all of them. The family history and bmi are more typical of type 2. Age is possibly slightly lower than many type 2 but again these days not so unusual either.

If you do end up injecting forever you will acclimatise and it will become your new normal even if it remains a p.i.t.a at times, especially with your determination. But as stated above you’ll have a wider, more socially accepted, dietary range than a diet controlled type 2. Swings and roundabouts to a degree. Different issues but all manageable.

 

[type2_2020]

So there's pros and cons. I actually don't have any issues with injecting insulin, I've been doing it for 50 years, it's the hypos I hate the most.
.

You're really good doing it for that long. It takes me 10 minutes to inject, it's like a horror role play for me, need to get over the needles, then I take my time pushing it in, takes a good while and if I feel pain I take it out and start in a different area and start all over again.

My diabetes nurse got back in contact after the doctors call, because i woke up thinking about LADA and i messaged her on whatsapp about it. She's responded that they think but not 100% sure i'm type 2 but they have a reason to suspect T2. That they're starting the metformin to see how my body reacts to 1/2 the dosage of insulin and they will eventually whine me off of insulin based on my results from the next A1c and BG from today onwards.

Sort of contradicts what the doctor said, I think I will take this into my own hands and work really hard to lose the weight at leat 15 - 20 kilos and see if my sensitivity disappears.

On another note: I had the dietician on the phone today, she wasn't impressed with my new plant based (ex chicken and fish) diet. She says i'm being too aggressive cutting things out and I need focus on my calcium and iron intake since i cut red meat, oils and spreads, fruits high in sugar and dairy out. So guess I need to open my pallet a bit more. I am really enjoying my low carb diet but she says I need to eat carbs at least until they know my type because carbs work differently in T1s as it does in T2s. I don't miss carbs but everything is so conflicting because I'm stuck in limbo not knowing what i'm working with. My diet reflects a T2, but because of that 50/50 chance of T1 she's said I need to have more than 150g.