Type 2 Now Injecting! ... and now Type 1

[CivicFreak]

Hi all!

I was diagnosed as T2 in late 2017 after a few weeks of backwards and forwards to doctors, as they couldn't seem to decide what type I was (I had T1 symptoms such as rapid weight loss, although I don't recall the C-Peptide test being done). They finally decided I was T2 and put me on Metformin (2000mg initially, eventually reducing to 1000mg daily). For the last 2 and a half years I had my BG mostly under control, with my A1c sitting around the 45-50 mark. However this year I've suddenly taken a massive backwards step - I fell ill in March (not Covid) and collapsed, falling unconscious. The cause has not yet been determined however since then my BG has been steadily rising. Averaging around 15.5 mmol/L before meals and can increase into the 20s after meal, regardless of what I ate. I can eat nothing and the BG still wasn't falling!

Been back to doctor's recently for further blood tests and my 2 recent A1c tests have been 107 and 103. Diabetic nurse then added Gliclazide in addition to the Metformin but this had no effect whatsoever. Had a call on Wednesday of this week and they called me to my local diabetic clinic urgently, as they were concerned by my further weight loss, blurred vision and inability to bring my BG down.

I've now been prescribed Tresiba and Novorapid in addition to Metformin and Gliclazide, to help bring my BG down. I also have high concentrations of peroxidase antibodies in my thyroid, which is also being looked into. In addition they are now testing to see if I am indeed type 1.

My question is this - if it is determined that I am indeed T2, is it likely at this stage that I will now be taking insulin for life, or is there a likelihood that once it is under control I may be taken off it again? I'm concerned by the escalation from metformin, to metformin and glic, to metformin, glic and insulin in such a short period of only a few months. In fact it was only about a week from getting put on glic that I was also given insulin. Also, if it is determined that I have an autoimmune thyroid disease, could this affect BG?

Thanks for taking the time to read 🙂

 

[grovesy]

Hi all!

I was diagnosed as T2 in late 2017 after a few weeks of backwards and forwards to doctors, as they couldn't seem to decide what type I was (I had T1 symptoms such as rapid weight loss, although I don't recall the C-Peptide test being done). They finally decided I was T2 and put me on Metformin (2000mg initially, eventually reducing to 1000mg daily). For the last 2 and a half years I had my BG mostly under control, with my A1c sitting around the 45-50 mark. However this year I've suddenly taken a massive backwards step - I fell ill in March (not Covid) and collapsed, falling unconscious. The cause has not yet been determined however since then my BG has been steadily rising. Averaging around 15.5 mmol/L before meals and can increase into the 20s after meal, regardless of what I ate. I can eat nothing and the BG still wasn't falling!

Been back to doctor's recently for further blood tests and my 2 recent A1c tests have been 107 and 103. Diabetic nurse then added Gliclazide in addition to the Metformin but this had no effect whatsoever. Had a call on Wednesday of this week and they called me to my local diabetic clinic urgently, as they were concerned by my further weight loss, blurred vision and inability to bring my BG down.

I've now been prescribed Tresiba and Novorapid in addition to Metformin and Gliclazide, to help bring my BG down. I also have high concentrations of peroxidase antibodies in my thyroid, which is also being looked into. In addition they are now testing to see if I am indeed type 1.

My question is this - if it is determined that I am indeed T2, is it likely at this stage that I will now be taking insulin for life, or is there a likelihood that once it is under control I may be taken off it again? I'm concerned by the escalation from metformin, to metformin and glic, to metformin, glic and insulin in such a short period of only a few months. In fact it was only about a week from getting put on glic that I was also given insulin. Also, if it is determined that I have an autoimmune thyroid disease, could this affect BG?

Thanks for taking the time to read 🙂

I would hazard a guess you are a Type1.5 or late onset Type 1.

 

[CivicFreak]

I would hazard a guess you are a Type1.5 or late onset Type 1.

This is potentially the case. The interesting thing is that although I continue to lose weight due to my body burning fat reserves, my ketones are very low, so low as to be non-existent, which I think is puzzling the diabetes team somewhat.

I do remember when I was diagnosed my doctor said to me that he wouldn't be surprised if I ended up injecting a few years down the line. Not sure how he came to that conclusion but it seems he was right!

Will just wait for the C-Peptide to come back and hopefully in the meantime the insulin will help to bring my BG down.

 

[novonord]

need to have your antibodies checked Gad65, islet cell antibodies and another which I forget the name of
need to have a fasting c-peptide
these tests should determine whether you are a type 1, type 1.5 antibody positive generally and c-peptide low or type 2 antibody usually negative and c-peptide normal or high.
GP is right to check for other autoimmune disease and should be asking about your family history- is there any thyroid disease or other autoimmune disease in close relatives?
from what you're saying, it's suspicious that you may be type 1.5 and may need insulin but the tests should settle the issue.

 

[novonord]

looking at your meds, you're only on small doses of gliclazide 80mg...max dose of that is 320mg and on relatively small dose of metformin, max dose of that is 2gm so might be worth asking whether these can be maximised with appropriate diet before getting stuck on insulin...

 

[CivicFreak]

looking at your meds, you're only on small doses of gliclazide 80mg...max dose of that is 320mg and on relatively small dose of metformin, max dose of that is 2gm so might be worth asking whether these can be maximised with appropriate diet before getting stuck on insulin...

I used to be on 2000mg metformin, but recently it just wasn't effective. I would certainly prefer not to be stuck on insulin in all honesty. They had considered increasing the glic but for some reason decided against it. In honesty I have been having high BG for months I was fine with trying the insulin as I wanted to bring my BG down as quickly as possible, but obviously in a controlled way.

With regards to thyroid, yes my sister had hypothyroidism and ended up with thyroid cancer 2 years ago so it's now been removed. I naturally told the nurse this, and antibody tests have been carried out (serum thyroid peroxidase antibody concentration 437 u/mL), so along with antibody tests for diabetes I am already aware that there are high antibody concentrations in my thyroid, which points to an autoimmune disease. I do wonder if this could be contributing to my BG.

 

[novonord]

I used to be on 2000mg metformin, but recently it just wasn't effective. I would certainly prefer not to be stuck on insulin in all honesty. They had considered increasing the glic but for some reason decided against it. In honesty I have been having high BG for months I was fine with trying the insulin as I wanted to bring my BG down as quickly as possible, but obviously in a controlled way.

With regards to thyroid, yes my sister had hypothyroidism and ended up with thyroid cancer 2 years ago so it's now been removed. I naturally told the nurse this, and antibody tests have been carried out (serum thyroid peroxidase antibody concentration 437 u/mL), so along with antibody tests for diabetes I am already aware that there are high antibody concentrations in my thyroid, which points to an autoimmune disease. I do wonder if this could be contributing to my BG.

your hba1c is still very high, you don't say how long you've been on insulin, your gliclazide dose has been low and was unlikely ever to have kept your post prandial sugars down all day if, say, you took it as a bolus in the morning, in any event your HbA1c level is unlikely to be brought under control by oral therapies alone, unless you've been taking far too much carb.
your thyroid is unlikely to alter your BGs unless you are very lethargic from hypothyroidism with a markedly reduced metabolism. Should you be hyperthyroid, then that would speed up your metabolic rate and might marginally reduce your BG. if you've been on insulin a little while, then an HbA1c of over 100 indicates that your doses/regimen needs to be
altered in combination with dietary advice.
you need to establish whether you're a type 1, type 1.5 or type 2
sus that you're likely to be type 1.5 but should it turn out that you're a type 2 then a trial of GLP 1 therapy, increased gliclazide and metformin and diet might be considered though your Hba1c is very high...

 

[CivicFreak]

your hba1c is still very high, you don't say how long you've been on insulin, your gliclazide dose has been low and was unlikely ever to have kept your post prandial sugars down all day if, say, you took it as a bolus in the morning, in any event your HbA1c level is unlikely to be brought under control by oral therapies alone, unless you've been taking far too much carb.
your thyroid is unlikely to alter your BGs unless you are very lethargic from hypothyroidism with a markedly reduced metabolism. Should you be hyperthyroid, then that would speed up your metabolic rate and might marginally reduce your BG. if you've been on insulin a little while, then an HbA1c of over 100 indicates that your doses/regimen needs to be
altered in combination with dietary advice.
you need to establish whether you're a type 1, type 1.5 or type 2
sus that you're likely to be type 1.5 but should it turn out that you're a type 2 then a trial of GLP 1 therapy, increased gliclazide and metformin and diet might be considered though your Hba1c is very high...

Sorry you're right I didn't mention how long I've been on insulin for. I started only a few days ago - Thursday 29th Oct, and I've only been taking Gliclazide for a week. I agree I'm not not quite sure why they decided so quickly to move me from just the metformin, to gliclazide and insulin in a little over a week but this is where I am. I have always managed to control my BG by diet, low dose of metformin and exercise, but since I fell ill in March something has changed. Like you suggested, I also thought that perhaps I had increased my carbs, which I know is often the main culprit in sustained high BG. However I have had days where I have had nothing but salads, with very, very low amounts of carbohydrate but still my average before meals is 15.

As you suggest, the clinic are now working to understand what type I am, and will go from there. Glad to know my thyroid issues have little effect on BG, thank you 🙂

 

[SB2015]

Misdiagnosis is so common as an adult, especially because as the destruction of Beta cells is slower in adults than in children. This often leads to a very low dose of insulin needed at the start, as the remaining Beta cells continue to react to the glucose in the blood stream.

Let us know how you get on with the results of the tests.

 

[CivicFreak]

Misdiagnosis is so common as an adult, especially because as the destruction of Beta cells is slower in adults than in children. This often leads to a very low dose of insulin needed at the start, as the remaining Beta cells continue to react to the glucose in the blood stream.

Let us know how you get on with the results of the tests.

Thank you, will do! The bloods had to be sent away as they don't do the test in my city. Seems the insulin is helping bring BG down in any case - fasting BG this morning was 9.1. Still high admittedly but certainly lower than the 15.5 average first thing in the morning.

 

[Ljc]

A fasting 9.1 is a huge improvement. Are you starting to feel better in yourself ? soon after going on insulin I realised just how rough I had been feeling , because I had started to feel better all thanks to insulin.

 

[CivicFreak]

A fasting 9.1 is a huge improvement. Are you starting to feel better in yourself ? soon after going on insulin I realised just how rough I had been feeling , because I had started to feel better all thanks to insulin.

Yeah it's definitely an improvement. It's been steadily improving since I started on insulin last Thursday, even though I'm only on 6 units daily. It's certainly doing more than jus the tablets alone.

Thursday's fasting BG was 18.1, Friday's 12.2, Saturday's 12.4 and today's 9.1, and that is even after a bed time reading of 19.8 last night.

I can't say I necessarily feel any different, because I didn't feel ill beforehand. I would say I was more concerned, which I guess had an effect on my mental well being, but knowing that the BG is slowly coming back down is definitely giving me some relief.

I can see you are also on insulin, have you been on it long? Do you expect to be on it long term? I'm not quite sure what the plans are for me, whether they keep me on insulin until my BG is under control and then go back to just tablets, or keep the insulin and monitor it.

 

[Ljc]

I’ve been an insulin junky since 2016 , it’s the only thing I can have now.

Your insulin needs are low, most insulin dependent T2s need much bigger doses due to insulin resistance , so to me it looks like you may not have T2.

 

[CivicFreak]

I’ve been an insulin junky since 2016 , it’s the only thing I can have now.

Your insulin needs are low, most insulin dependent T2s need much bigger doses due to insulin resistance, so to me it looks like you may not have T2.

I was diagnosed as T2 in 2017 after I had been exhibiting symptoms for a few months - blurred vision, excess thirst, rapid weight loss. Weirdly I didn't connect the dots although my girlfriend kept urging me to see a doctor. The thing that triggered me was that I got a tattoo on my leg and it took an absolute age to heal (I think 7 weeks) whereas other tattoos I'd had previously had healed within a couple of weeks. This was the thing that got me thinking that something was wrong, so got myself to docs. My A1c at time of diagnosis was 122, and there were ketones in my urine too, which led doctors to believe I may have been T1. After a number of blood tests they settled on T2 and put me on 2000mg metformin, which, combined with diet and exercise keep it under control. Until this year that is. I know I'm on low doses of metformin and glic but now neither are effective at all, so the next step was insulin. Now having further tests to determine whether I'm T1 or not, but I suspect not.

I do still have large post meal but taking Tresiba is helping bring it down quicker. I was also given Novorapid, but as yet haven't been instructed to use it. I have been keeping a diary of my BG since being started on Tresiba last week and am going to be talking to the diabetes team tomorrow to give them my readings while awaiting my blood test results to determine T1/T2.

I suspect that I'll eventually be taken off metformin and glic and just be on insulin alone, as this so far seems far more effective than the tablets. Early days of course but we'll see how this pans out over the coming weeks. I'm still not hitting my targets but I'm slowly getting closer even though I've only been on insulin for 4 days 🙂

 

[Ljc]

Tbh I strongly suspect you have LADA ( type 1.5) it often initially responds to T2 meds then in time only insulin works.

I wonder why they haven’t explained about Novorapid especially when and how to use it to correct hypers.

 

[CivicFreak]

Tbh I strongly suspect you have LADA ( type 1.5) it often initially responds to T2 meds then in time only insulin works.

I wonder why they haven’t explained about Novorapid especially when and how to use it to correct hypers.

Ah now that is interesting. I hadn't heard of type 1.5 so just looked into it. Could be a possibility - certainly the metformin I take is no longer effective, and the glic hasn't done anything to bring the BG down either. I assume the C-Peptide and antibody blood tests I'm having done may go some way to determining this.

With regard to to the novorapid, the nurse told me that I will no doubt start to use it, and she did explain what it was for, but I think the plan was for me to keep a diary of my BG levels over the days since taking my insulin and present them with it this coming week so they can get a picture of the spikes that are occurring. Interestingly the spikes are still very much present. At my breakfast my BG was 9.1 and I just tested before my midday meal now and it's up at 18.5. These spikes are frequent even though I don't have many carbs at all. I suspect that the nurses will tell me I will need to use novorapid to bring these spikes down quickly, and what units I need to take. I was told to call them tomorrow, so hopefully will find out a little more.

I just wish the blood results would come back quickly, but I understand this can take a few weeks as they need to be sent away, and as Covid seems to be impacting everything I expect it to take even longer now.

 

[SB2015]

This is definitely sounding more and more like LADA. With levels like that I will update want to talk to the nurse about adjusting insulin doses, as at present they are not enabling you to keep in range.

I know the c peptide takes a bout a week or more to do the full test, so that will be a bit of a wait.
It would be worth a call tomorrow for more info and some advice.

 

[novonord]

wishing you all the best- it can be daunting starting on insulin...think tresiba half life is slightly over 24 hr, 6U is a small dose, so they're probably waiting to stabilise your morning BG around 6-7 then would introduce short-acting insulin, it's likely you'll need that as well depending on the result of the c-peptide and antibody tests.

 

[CivicFreak]

Thanks all. Appreciate the support. When they told me about insulin I had thoughts about the older type - the ones where you had a syringe and had to measure your own dose form a vial. I wasn't keen on having to do that, but thankfully times have moved on. With the pens it's relatively intrusive and painless in more than one sense of the word.

@SB2015 Yes, now that I understand that LADA is, it seems to make sense that this is potentially what I may have. It certainly fits as I don't necessarily have symptoms that are the definition of either type, rather I have bits of both. I was advised by my nurse to call the specialists today now that I have 4 days' worth of results since starting insulin.

@novonord This sounds logical, and mirrors what the nurse told me. When I speak to specialists today I will hopefully get to understand a little more. My fasting BG is definitely reducing - last night before bed it was at 14, and this morning it's 8.7 so definitely going in the right direction. I do have pretty big spikes after meal so as you say this is likely where I'll be told to use the novorapid, to ensure the spikes aren't so severe. As advised I do ensure that I have small portions of carbs with every meal but even so, the spikes are quite aggressive.

 

[everydayupsanddowns]

Hope your test results bring clarity @CivicFreak, and you can get a confirmed classification.

Glad to hear that your levels are slowly beginning to improve.

Hopefully you’ll be rockin and rollin with basal:bolus MDI in no time, giving you much more chance to aim for in-range BGs much more of the time 🙂