Confused.

[purrpleness]

Hi Everyone,
I was diagnosed with type 2 in Feb this year and only started taking gliclazide this week. My hba1c was only 50, so pretty low compared to alot of you. Anyway, I had my diabetic nurse appointment on the 30th March, she said cut out sugar, get your sugar from carbs, basically it's only type 2. A week later I saw the diabetic consultant at the hospital on the 6th of April, I kept a log of my sugar levels as I have a machine I purchased in November as I felt 'off'.
She looked at them and thought hmm, she was thinking of putting me on insulin there and then.. My sister is type 1 and she was with me btw. Anyway, we agreed I would finger pick 4 times a day for a week and email the results, which I did and they put me on 40g gliclazide, she then sent me for a blood test, c-peptide, zinc something and something else. She informed me it could take up to 8 weeks to come back and they will write to me.
Fast forward to yesterday, I get a phone call from the diabetic consultant saying my test came back (that was quick) she told me I had strong antibodies and a positive so im type 1. So come off the gliclazide and they're going to start me on insulin cause I'm going to need it eventually. I have been in complete shock cause I honestly didn't see that coming. I am very nervous. I have hospital on Tuesday for insulin and an eye screening.
What I was hoping is that you wonderful people are full of information (only so much you can google) What is the positive? Am I heading into type 1 or .5? Have alot to get my head around.

Thank you for getting this far, sorry for the essay, hope it made sense lol

 

[Antje77]

Welcome to the club.

It's a lot to take in at first, take your time and a deep breath!
It's wonderful that you got your diagnosis so quickly, for many of us it takes years of muddling through with medication that isn't really doing the job before someone thinks it may not be T2 after all.

Am I heading into type 1 or .5?

It's all the same really, T1, LADA, T1.5, they all mean that your diabetes is caused by your immune system killing off your beta cells.
'Traditional' T1 is usually seen in kids, it comes on really fast. LADA/T1.5 is more often seen in adults. Same condition, only it starts slower. It's still T1.

Please have a read of this thread, I think you'll find it useful: https://www.diabetes.co.uk/forum/threads/5-things-any-newly-diagnosed-type-1-should-know.175425/

First bit of advice I'll give you is to always carry your meter and something to treat a hypo with.
For most of us, hypos are annoying but easily dealt with, but you do not want to have to navigate stairs or walk back home from your evening stroll before you can treat.

For all the other stuff you're about to learn: be curious, ask questions, but don't forget that you don't have to learn it all at once. This is a marathon, not a sprint.

 

[Mrs HJG]

Hi @purrpleness I was mistakenly diagnosed as T2 then confirmed T1 LADA less than 18 months ago, all 3 anti-bodies positive, but I tried insulin and stopped after a few weeks as I was still producing enough insulin of my own, and I was going too low on very little. Did you get your c-peptide result yet - this measures your natural insulin production, but I am not sure if glicazade effects this and would give a false high reading.

Glad to hear you weren't on glicazade for long though, as that forces your pancreas to work harder (and for T1s possibly kill off your beta cells quicker), and my consultant says the goal is to not stress my pancreas; by eating low carb I am in non-diabetic BG range and going strong on my honeymoon.

There is so much to take on board, but having a T1 sister will really help you, although if she was diagnosed as a child then it could be quite a different kettle of fish.

Glad you were referred to a consultant so soon, because of your sister I suspect - I was told I would have to wait 12months+ so had to go private to be seen 4 months after diagnosis, even though I had come back anti-body positive

As you have not been diagnosed after a DKA crisis or other unfortunate event, then I would 'suggest' you need to consider your priorities and lifestyle as well as your consultant's views and ask lots of questions when you are seen again.

I personally want to be off insulin for as long as possible, I am not a 'foodie' so happy (95% of the time) to eat a restricted diet, I want to be able to jump in the car at all hours of the day or night (3 teens to chauffeur about) without having to worry about hypos and BG readings, and not have to worry about dosing and carrying insulin etc. I have been offered insulin to be able to eat a more 'normal' (high carb) diet, but to me that is crazy, but I know others have completely different views. I know once my BG levels increase I will eventually require insulin, but I am holding out for closed-loop pumps etc to be the norm by then.

Obviously the speed your diabetes is progressing will determine if you need to go straight onto that regime, but one size does not fit all and depending on how open-minded/up to date your diabetes team are, the more options you may have. As T1 you should get Libre on prescription and this will help show what is going on.

Good luck on Tuesday.

 

[EllieM]

With due respect @Mrs HJG you have a relatively unusual lada start with initial high cpeptide/insulin production? So it makes sense that you enjoy your honeymoon period for as long as possible.

But for someone with low insulin levels at the start (not sure what the situation is for @purpleness ) then I think insulin is your friend. It gets a bad press from some T2s here because they often produce too much and they want to reduce their insulin resistance and hence their insulin production.

But it is an essential hormone and I would argue that there is no harm in augmenting your own supply if it is insufficient. The last thing you want is to go into a life threatening DKA (diabetic ketoacidosis) because of lack of insulin. My advice would be not fo fear it it has saved the lives of countless T1s.

Modern tech for T1s is awesome and it really is easier to manage than it was 50 or even 10 years ago.

I agree having a T1 sister should be a big help.

 

[purrpleness]

Hi there,
Thank you for your replies, I haven't seen my blood results yet, I'm going to ask on Tuesday as the consultant mentioned the word positive and strong antibodies, they did test c-peptide, Zinc and something else. I was kinda stunned when I was told mainly because I really didn't see it coming, other than my sister we have no other diabetics in the family, but we do have thyroid and vitiligo in the family, I also have a history of b12 deficiency which are all autoimmune.
I had the test before I was even prescribed gliclazide so didn't have anything in my system.

The consultant did say that I will need insulin eventually so to start me off on a small daily dose or something and come off the gliclazide.
My sister lives just over an hour away but she's managed to come to all my appointments thankfully, very good support, I know she's really upset about it cause she's had her struggles with being T1 for 25years and is worried for me.

I think I'm seeing a dietician aswell on Tuesday, I would like to get a CGM as my fingers are sore from the daily finger pricks - I was told to carry on testing morning and bedtime. I'm very nervous about what to expect, I'm currently waiting on my medical exemption certificate also.
I want Tuesday to hurry up as I want to know so much more, that's why my sister is coming as she knows what to ask and understands it alot more than me. I thought I knew alot about T1 growing up with my sister but now I feel like I know nothing.

 

[Mrs HJG]

With due respect @Mrs HJG you have a relatively unusual lada start with initial high cpeptide/insulin production? So it makes sense that you enjoy your honeymoon period for as long as possible.

But for someone with low insulin levels at the start (not sure what the situation is for @purpleness ) then I think insulin is your friend. It gets a bad press from some T2s here because they often produce too much and they want to reduce their insulin resistance and hence their insulin production.

But it is an essential hormone and I would argue that there is no harm in augmenting your own supply if it is insufficient. The last thing you want is to go into a life threatening DKA (diabetic ketoacidosis) because of lack of insulin. My advice would be not fo fear it it has saved the lives of countless T1s.

Modern tech for T1s is awesome and it really is easier to manage than it was 50 or even 10 years ago.

I agree having a T1 sister should be a big help.

Hi @EllieM I think I just got diagnosed ‘earlier’ than most people did in the past, probably due to covid pressure on the NHS, and so I am able to self-help with slowing progression, and so maybe not rare/special in condition but rare to know about it so soon? Doctors seem to be doing lots of broad, full spectrum blood tests for a lot of vague ailments and also as the cheapest and quickest way to rule out some of the big nasties and therefore they are bound to uncover more high BG results than before.

If I hadn’t had persistent back ache and a few perimenopause symptoms I would never have had my HbA1c tested and would have happily gone on my merry carby way until a DKA crisis or complication sooner or later, and then straight onto insulin for good.

I don’t fear insulin, more that I am a lazy git who doesn’t need the extra aggro or want to be dealing with the DVLA again, and other bureaucracy never mind the actual carb counting and injecting mularky. From so many threads on here I think that we all totally appreciate doctors and nurses for saving lives, but their understanding for living the best life you have, and being up to date on diabetes, carbs, statins etc isn’t always right or personal enough and no-one should be told what to do just because that’s what works for most others.

I just wanted the OP, to know that she hopefully isn’t headed for her worst nightmare at high speed, she didn’t get diagnosed due to DKA, HbA1c was only 50 and her c-pep is as yet unknown, she has time to breathe, take stock and ask all the questions. Insulin right now may certainly be the best option, but sometimes it isn’t, or the only option and not everyone knows that.

‘T1s not on insulin’ are few and far between, you can’t blame me for wanting to recruit more members to the gang!

 

[Jaylee]

Hi @purrpleness ,

What kind of numbers is your meter throwing up lately, In comparison to February?

Hi @EllieM .

‘T1s not on insulin’ are few and far between, you can’t blame me for wanting to recruit more members to the gang!

It actually very dangerous & misleading to also suggest they don’t need insulin when prescribed…

 

[purrpleness]

Hi @purrpleness ,

What kind of numbers is your meter throwing up lately, In comparison to February?



It actually very dangerous & misleading to also suggest they don’t need insulin when prescribed…

Not much difference, I take a pic each time to show the consultant. Friday I stayed at 14.1 for ages due to the news I was given, could feel I was off. I had some cake at 5pm today and tested 11.3, then 2 hrs later at 7pm tested again and it's now at 10.3. I had a small bit of chocolate cake and wanted to test to see how it would effect me, I don't eat cake usually btw.

I do keep asking myself, maybe they have got it wrong? But surely they wouldn't offer me insulin if I wasn't going to need it, they are the professionals.

 

[Jaylee]

Not much difference, I take a pic each time to show the consultant. Friday I stayed at 14.1 for ages due to the news I was given, could feel I was off. I had some cake at 5pm today and tested 11.3, then 2 hrs later at 7pm tested again and it's now at 10.3. I had a small bit of chocolate cake and wanted to test to see how it would effect me, I don't eat cake usually btw.

I do keep asking myself, maybe they have got it wrong? But surely they wouldn't offer me insulin if I wasn't going to need it, they are the professionals.View attachment 60772

It does look (in your words.) off. What diet had you adopted regarding the advice given by the nurse when diagnosed T2 in feb?

Just a brief run down on your general meals.

 

[purrpleness]

It does look (in your words.) off. What diet had you adopted regarding the advice given by the nurse when diagnosed T2 in feb?

Just a brief run down on your general meals.

I haven't had another hba1c test since Feb, I spoke to my Dr over the phone and had to wait 3 weeks before seeing the DN who said stop eating sugar and get your energy from carbs, that was it. It was the following week I had the consultant appointment where she suggested insulin there and then going by my numbers and family history, that's when she sent me for the blood test. It was only 3 weeks ago I got a response from the diabetic team when I emailed my numbers they asked for over a week if testing that they prescribed me gliclazide, I had to wait over a week (I had to chase them up) for my prescription, only started it last Saturday. Then fast forward to Friday just gone, I get my c-peptide, gad, Zinc test results and that's where I am at now.
It all started back in November with Panic attacks, then not being able to leave the house, exhausted, that's pretty much when my journey started, I quit 2 jobs I loved, and started therapy. I now have an evening job as I seem to struggle being around people atm, no idea yet. I do wonder if stress and anxiety triggered something.

I also never ate breakfast, although I do now. I have a good home cooked meal every evening, my diet is good, I cycle daily, do between 12-18,000 steps a day, 9.5st.

 

[Jaylee]

I haven't had another hba1c test since Feb, I spoke to my Dr over the phone and had to wait 3 weeks before seeing the DN who said stop eating sugar and get your energy from carbs, that was it. It was the following week I had the consultant appointment where she suggested insulin there and then going by my numbers and family history, that's when she sent me for the blood test. It was only 3 weeks ago I got a response from the diabetic team when I emailed my numbers they asked for over a week if testing that they prescribed me gliclazide, I had to wait over a week (I had to chase them up) for my prescription, only started it last Saturday. Then fast forward to Friday just gone, I get my c-peptide, gad, Zinc test results and that's where I am at now.
It all started back in November with Panic attacks, then not being able to leave the house, exhausted, that's pretty much when my journey started, I quit 2 jobs I loved, and started therapy. I now have an evening job as I seem to struggle being around people atm, no idea yet. I do wonder if stress and anxiety triggered something.

I also never ate breakfast, although I do now. I have a good home cooked meal every evening, my diet is good, I cycle daily, do between 12-18,000 steps a day, 9.5st.

I’m sorry you felt you had to quit 2 jobs you love. Higher than normal BGs can cause an irrational emotional response. (It’s documented with others, too.) I’m more at peace with myself & adept with using insulin.
And yes I can empathise with wishing to be left alone with the sort of figures on you meter that you shared on the occasions I go wayward on the bloods.
Colleagues & even my wife? “Not tonight dear..” (I’ve explained why. No problem not “personal.” Or even physical.)

I could never face food in the morning after getting up. Was ordered as a kid to do it. before school on fixed dosage of porcine insulin?(long time ago.) I don’t now. Grown adult.

Ask whatever advice you need as it crops up from insulin using T1s or LADAs no question will be to “silly.” Unfortunately there is a “text book.” & no one is written souly in “black & white..”

There are certain types of carbs that just don’t work for me with my insulin bolus working profile.

Please, let us know what insulins you eventually are prescribed? & we can hopefully support from “there.”

Best wishes moving forward..

 

[Antje77]

It all started back in November with Panic attacks, then not being able to leave the house, exhausted, that's pretty much when my journey started, I quit 2 jobs I loved, and started therapy. I now have an evening job as I seem to struggle being around people atm, no idea yet. I do wonder if stress and anxiety triggered something.

It may well be the other way around.
My depression and anxiety improved as if someone had opened a curtain once I started insulin and got back to more healthy numbers.

It's high BG itself that can cause this!

 

[Jaylee]

It may well be the other way around.
My depression and anxiety improved as if someone had opened a curtain once I started insulin and got back to more healthy numbers.

It's high BG itself that can cause this!

It seems with me over many years of experience. It can do this. So I wouldn’t discount the correlation..

 

[Mrs HJG]

Hi @purrpleness ,

It actually very dangerous & misleading to also suggest they don’t need insulin when prescribed…

Not what I was suggesting at all. I was just trying to point out that not everyone needs insulin immediately, all the results need to be considered and OP is still waiting on her c-pep which is pretty crucial to the decision.

Sorry if anyone is confused by what so said.

 

[purrpleness]

Not what I was suggesting at all. I was just trying to point out that not everyone needs insulin immediately, all the results need to be considered and OP is still waiting on her c-pep which is pretty crucial to the decision.

Sorry if anyone is confused by what so said.

I've had my c-pep results, hence the decision to start the insulin, I just don't know what they are as I was told over the phone, I'll find out the figures tomorrow, I did email asking to see the results in writing, don't think they're working today. Today is going to drag, as I haven't yet accepted all this change and I think it'll kick in tomorrow. I've researched an awful lot on what all the test results mean but cause I don't know the figures I can't figure it out for my self if that makes sense.
I'll update you tomorrow evening when I know more. Thank you for your advice and I get where your both coming from.

 

[Mrs HJG]

I've had my c-pep results, hence the decision to start the insulin, I just don't know what they are as I was told over the phone, I'll find out the figures tomorrow, I did email asking to see the results in writing, don't think they're working today. Today is going to drag, as I haven't yet accepted all this change and I think it'll kick in tomorrow. I've researched an awful lot on what all the test results mean but cause I don't know the figures I can't figure it out for my self if that makes sense.
I'll update you tomorrow evening when I know more. Thank you for your advice and I get where your both coming from.

Apologies if I confused you with all my personal experience, that was not my intention. As you get your head round this you will be able to figure out what is best for you; I am a bit of an anomaly, but I hate seeing others getting upset and overwhelmed as I know exactly how that felt not too long ago, especially when all you want is a simple answer when there are often many ifs/ands/buts.

Some T1s/LADAs on here (and obviously in the world) choose to eat and do exactly what they did before they were diagnosed and balance the right amount of insulin to make that happen, others make changes, eg. go lower carb/more exercise and require less insulin and manage everything better that way, heck there could be some who embrace the carbs and eat more than before and top up with more insulin! There are choices to suit your lifestyle, not the other way round. I am guessing you will probably be pointed in the direction of the Eatwell plate at first, so initial dosing will be based on that, and you can then speak with your diabetes team for guidance to adjust if necessary.

Are you registered on the NHS app and Patients Know Best? Your results could all be on there (but sadly not necessarily in a format that is easy to understand - I think everyone's c-peps I have seen on here have used different units, depending on the lab! ).

Good luck tomorrow.

 

[In Response]

My experience is that the dietitian will
- focus on weight loss if you have any to lose. In fact, I did not have any to lose but my initial dietitian advice was still around avoiding food that would make me put on weight even though I asked to speak to her to learn how to fuel an endurance walk. Hopefully, this has changed.
- teach you how to carb count. This is very important to understand how to dose insulin. It is not about restricting carbs.

I have never had a dietitian focus on the Eat well plate

 

[purrpleness]

Good evening,
Thought I'd give you an update, my Positive GAD antibody test came back as 1460 or 14.6? As the Internet states under 5.0 is normal.
I don't appear to have a c-peptide result, I remember seeing it on the blood form, maybe that hasn't come back yet?
Anyway, diabetic nurse was so lovely, I got a new glucose monitor, I've been told to take 6units of basal insulin same time everyday, I'm yet to pick the pens up from the pharmacy. I also have a prescription for a fast acting one, but not to use that one yet. I need to test through the day once I start the insulin and then send them the results so they can work out if it's the right dose I guess.
I was in the room for an hr and a half, I came home with alot of information and pleased with how it went. She also got me to practice the insulin on a squishy penguin lol
We've basically caught my diabetes early as later down the line I will be completely insulin dependent. She also kept calling it type 1, no LADA or .5 mentioned at all.

 

[Jaylee]

Good evening,
Thought I'd give you an update, my Positive GAD antibody test came back as 1460 or 14.6? As the Internet states under 5.0 is normal.
I don't appear to have a c-peptide result, I remember seeing it on the blood form, maybe that hasn't come back yet?
Anyway, diabetic nurse was so lovely, I got a new glucose monitor, I've been told to take 6units of basal insulin same time everyday, I'm yet to pick the pens up from the pharmacy. I also have a prescription for a fast acting one, but not to use that one yet. I need to test through the day once I start the insulin and then send them the results so they can work out if it's the right dose I guess.
I was in the room for an hr and a half, I came home with alot of information and pleased with how it went. She also got me to practice the insulin on a squishy penguin lol
We've basically caught my diabetes early as later down the line I will be completely insulin dependent. She also kept calling it type 1, no LADA or .5 mentioned at all.

Good evening & good news.!

I practiced on an orange. But they were big glass syringes back then..

What was your basal insulin called?

 

[Antje77]

Glad to hear your team is on the ball!

She also got me to practice the insulin on a squishy penguin lol

Poor penguin!
I'm glad I got to use an anonymous sponge, I wouldn't have wanted to stab an innocent penguin!

It completely baffles me why they don't let you practice on yourself with an empty pen.