What type?

[philm64]

Hi, just joined, Phil age 61, Sheffield, diagnosed 2013 with "Type 2" but (they've ruled out Type 1 a few times!) I appear to be more "LADA" (Type 1.5), as I'm losing weight (BMI 18.6 now), I'm getting worse (latest Hba1c - 71), and the drugs I'm on aren't working (Jardiance 25mg with breakfast; which makes me pee SO MUCH!!!), Merformin 1000mg, 1 with breakfast , one with dinner.

I'm very slim, active, and whilst I've not been *perfect* with my food choices at all times, I am trying and am basically grazing on nuts now!

I've just started wearing a CGM (Freestyle Libre2) on my arm, first week (a free trial), and the readings are shocking & eye opening - my mmol goes up from 9-10 on waking to 15 - 17mmol 2 hours after breakfast! But as a high metabolism active person, I simply cannot go "without" breakfast.....

I was sent to hospital just after Xmas with a spike of 21 & 22 mmol, and they discharged me after testing for Ketones (negative). This was a big shock to me.

I'm desperate for advice, & to know if my Hbc1c & daily readings are really terrible, as my Practice has now given up on me & referred me to the "top specialist" in Sheffield; I'm waiting for the referral letter to come through.

I was/am a fit runner, rock climber: I've run for England in my youth (orienteering), but (from an autoimmune point of view) I had SEVERE ME/cfs in my 30's, and a short relapse in 2021 (now back in remission). ME/cfs destroyed my life, but I am asymptomatic with my Diabetes, which is strange as I gather I'm really quite bad. Eyesight, feet, etc are all normal as is my BP, HR, liver function etc. I realise I do need to focus on diabetes now or my future looks bleak.

I would love to hear some wise words. And what to do next. Thanks! I attach some pics, including my daily pattern graph, and also typical (today, in fact) spike post-breakfast, which I understand is truly dreadful....... also my last 12 years Hba1c's.

 

[Jaylee]

Hi @philm64 ,

Welcome to the forum.

Looks like you done your homework..

I’ll tag in @Daibell who from memory had some challenges getting the correct treatment regime?
I feel they could help. (Cut me some slack if I’m wrong…)

 

[Rachox]

Hi @philm64 and welcome to the forum, I can’t help unfortunately but I’ll tag in another member who was originally diagnosed type 2 but is now treated as LADA, @Antje77 who may have some suggestions for you.

 

[EllieM]

Hi @philm64 and welcome to the forums.

Not everyone fits into a neat diabetes type but if you are losing weight they should be taking your condition seriously and testing for some of the more obscure diabetes types. So do you know if you've had a cpeptide test ? Low insulin is just one cause for weight loss and there are other possible causes. An endocrinologist is the obvious person to check you out.

Good luck

 

[philm64]

Hi @philm64 ,

Welcome to the forum.

Looks like you done your homework..

I’ll tag in @Daibell who from memory had some challenges getting the correct treatment regime?
I feel they could help. (Cut me some slack if I’m wrong…)

Thanks Jaylee!!!! Appreciated.

 

[philm64]

Hi @philm64 and welcome to the forum, I can’t help unfortunately but I’ll tag in another member who was originally diagnosed type 2 but is now treated as LADA, @Antje77 who may have some suggestions for you.

Hi Rach, and many thanks for that. I'll keep an eye out for any replies/ messages! Cheers, Phil

 

[Antje77]

Hi @philm64 , another welcome to the forum.
Like @Rachox said, I was initially diagnosed as a T2 with an hba1c of 78, 9 years ago.
I switched to low carb and started gliclazide, and I tested a lot to work out patterns.

Within a couple of weeks it became very clear that this wasn't doing the job, I never went below 10, often high teens.
After a month I begged for insulin, and the practice nurse agreed, even though I pretty much fit the classic T2 profile being 39 with a BMI of 35.
Another month of countless fingerpricks led me to ask for mealtime insulin as well, because I hated seeing my numbers go up with every meal and nothing I could do.
The insulin made me very happy because it gave me back control over my life.

I had suspected I wasn't T2 from the moment I started insulin but didn't pursue because everything was going pretty well, and I liked the practice nurse. It didn't matter much to me because I received the treatment I needed, no matter what type I had.
It was only two years later I asked for a referral to an endo, and only because being T1 would likely increase my chances of getting the Libre funded.

Endo diagnosed T1 based on C-peptide.

So in many details a very different history from yours.

To my thinking, finding a treament that works is even more important than knowing what type you have, and your treatment clearly isn't working well enough.

A C-peptide test will show how much insulin you produce. If it's low, it's clear you do not produce enough insulin, regardless of type of diabetes.
Antibody testing will diagnose T1 (which includes LADA) if positive. If negative it's inconclusive, not all T1s have the antibodies, and often not all antibodies are tested. I only had anti-GAD tested, which was negative. My endo diagnosed me with T1 based on C-peptide and needing insulin very quickly after diagnosis, despite eating low carb. She would have tested for the other antibodies if I wanted but I didn't see the need.

Just telling you my story in case there's something of use for you.

Good luck!

 

[philm64]

Hi @philm64 , another welcome to the forum.
Like @Rachox said, I was initially diagnosed as a T2 with an hba1c of 78, 9 years ago.
I switched to low carb and started gliclazide, and I tested a lot to work out patterns.

Within a couple of weeks it became very clear that this wasn't doing the job, I never went below 10, often high teens.
After a month I begged for insulin, and the practice nurse agreed, even though I pretty much fit the classic T2 profile being 39 with a BMI of 35.
Another month of countless fingerpricks led me to ask for mealtime insulin as well, because I hated seeing my numbers go up with every meal and nothing I could do.
The insulin made me very happy because it gave me back control over my life.

I had suspected I wasn't T2 from the moment I started insulin but didn't pursue because everything was going pretty well, and I liked the practice nurse. It didn't matter much to me because I received the treatment I needed, no matter what type I had.
It was only two years later I asked for a referral to an endo, and only because being T1 would likely increase my chances of getting the Libre funded.

Endo diagnosed T1 based on C-peptide.

So in many details a very different history from yours.

To my thinking, finding a treament that works is even more important than knowing what type you have, and your treatment clearly isn't working well enough.

A C-peptide test will show how much insulin you produce. If it's low, it's clear you do not produce enough insulin, regardless of type of diabetes.
Antibody testing will diagnose T1 (which includes LADA) if positive. If negative it's inconclusive, not all T1s have the antibodies, and often not all antibodies are tested. I only had anti-GAD tested, which was negative. My endo diagnosed me with T1 based on C-peptide and needing insulin very quickly after diagnosis, despite eating low carb. She would have tested for the other antibodies if I wanted but I didn't see the need.

Just telling you my story in case there's something of use for you.

Good luck!

Hi and thanks Antje77,
That's really interesting & useful. Wow, hba1c of 78! I'm heading that way....... can I ask what is it now?
I think i will need insulin, and I'm sure my c-peptide has been tested, I've just written to my practice nurse to ask.

After meals, was your mmol going crazy? as in over 15? Mine reached 19 6 days ago 2 hours after a "normal" breakfast. late afternoon & at evenings, it does drop below 10, sometimes to 8. Overall, tho, on average, high - 11+.

I'm now considering removing ALL carbs from breakfast & only eating protein & starches/fibre.

I'm hoping they will give me insulin now, I also hope they can give me $$ for the CGM I'm using, which is INCREDIBLY informative (Freestyle Libre2). I had no idea until I started this one week ago - as you never know when to prick test, and when you do, you don't know if it's going up, or down!!!! Such a tricky balancing act..... I'm super active (sports) (despite being 61, haha!), and VERY thin - 64kg / 1m85; so need to (somehow) get the calories in if not the carbs!!!!

Best wishes,
Phil

 

[Antje77]

I think i will need insulin, and I'm sure my c-peptide has been tested, I've just written to my practice nurse to ask.

It's unlikely that your C-peptide has been tested, it's usually ordered by an endo when there is doubt about type of diabetes.
Also, it's very useful to have access to your records so you can see your results yourself. If I understand correctly, you have a right to access them online in the UK, worth finding out. (I'm not in the UK so I don't know the details.)

After meals, was your mmol going crazy? as in over 15? Mine reached 19 6 days ago 2 hours after a "normal" breakfast.

It was, even with very little carbs.

Hi and thanks Antje77,
That's really interesting & useful. Wow, hba1c of 78! I'm heading that way....... can I ask what is it now?

It's been below 36 since a year after diagnosis. I still eat mostly low carb which for me makes it easier to avoid spikes and drops. However, this is not an hba1c to aim for, unless it comes pretty easy to you and without a lot of lows.

I'm now considering removing ALL carbs from breakfast & only eating protein & starches/fibre.

and VERY thin - 64kg / 1m85; so need to (somehow) get the calories in if not the carbs!!!!

Bacon, eggs and cheese has no carbs, tastes amazing, lots of calories. If you want the fibre, add spinach or tomato. Perfect breakfast, with only a little carbs from the veggies.
What do you mean with starches?
The easiest way to up the calories is to up the fats.
You might find this thread informative: https://www.diabetes.co.uk/forum/threads/jos-nutritional-thingy.210026/

 

[Rachox]

Also, it's very useful to have access to your records so you can see your results yourself. If I understand correctly, you have a right to access them online in the UK, worth finding out. (I'm not in the UK so I don't know the details.)

@philm64 the easiest way to get access to your GP records is to download the NHS app, make an account and go from there. To create an account you need to input some personal details, name, DOB, NHS or NI number and proof of ID etc…

 

[Alexandra100]

I'm now considering removing ALL carbs from breakfast & only eating protein & starches/fibre.

Starches ARE carbs. Have a look at Dr Unwin's Sugar spoons infographic.
You could experiment with removing most carbs from all meals and snacks, not just from breakfast. The results could tell you a lot.
Books to read are Dr Richard K Bernstein's "Diabetes Solution", Keith Runyan's "Master Type 1 Diabetes" and Dr Westman's "End Your Carb Confusion". Both Dr Westman and Dr Bernstein give helpful lists of what and what not to eat. You can also find them all on Youtube and much of Dr Bernstein's book is free to access online.
Diet Doctor's illustrated guides to food from low to high carb. are imo very helpful.

 

[philm64]

Starches ARE carbs. Have a look at Dr Unwin's Sugar spoons infographic.
You could experiment with removing most carbs from all meals and snacks, not just from breakfast. The results could tell you a lot.
Books to read are Dr Richard K Bernstein's "Diabetes Solution", Keith Runyan's "Master Type 1 Diabetes" and Dr Westman's "End Your Carb Confusion". Both Dr Westman and Dr Bernstein give helpful lists of what and what not to eat. You can also find them all on Youtube and much of Dr Bernstein's book is free to access online.
Diet Doctor's illustrated guides to food from low to high carb. are imo very helpful.

Thanks for that! Yes, I am seriously trying to reduce carbs - one piece of bread per day now, and I no longer buy "potatoes".

 

[philm64]

@philm64 the easiest way to get access to your GP records is to download the NHS app, make an account and go from there. To create an account you need to input some personal details, name, DOB, NHS or NI number and proof of ID etc…

Hi - thanks, yeah I've already got the NHS app on my mobile. It's useful, as you can see your test results. (All mine are normal, apart from an HbA1C of 71!!!!!!) . Results appear on there before the GP surgery see you to tell you!!!

 

[philm64]

It's unlikely that your C-peptide has been tested, it's usually ordered by an endo when there is doubt about type of diabetes.
Also, it's very useful to have access to your records so you can see your results yourself. If I understand correctly, you have a right to access them online in the UK, worth finding out. (I'm not in the UK so I don't know the details.)

It was, even with very little carbs.

It's been below 36 since a year after diagnosis. I still eat mostly low carb which for me makes it easier to avoid spikes and drops. However, this is not an hba1c to aim for, unless it comes pretty easy to you and without a lot of lows.


Bacon, eggs and cheese has no carbs, tastes amazing, lots of calories. If you want the fibre, add spinach or tomato. Perfect breakfast, with only a little carbs from the veggies.
What do you mean with starches?
The easiest way to up the calories is to up the fats.
You might find this thread informative: https://www.diabetes.co.uk/forum/threads/jos-nutritional-thingy.210026/

Thanks - great diet advice there, I am now resigned to no muesli or granola. I can certainly up the bacon, cheese, eggs etc, plus maybe oily fish at breakfast.
The past two mornings I've had nuts & seeds & blueberries for breakfast, and it's made a big difference (5mmol less than a week ago). So I am moving in the right direction - though quitting pizza, cakes, , treats etc is harsh. And friends & fmaily can't believe it (I'm extremely thin). (Bmi 18.6)

 

[yellowm]

Hi, just joined, Phil age 61, Sheffield, diagnosed 2013 with "Type 2" but (they've ruled out Type 1 a few times!) I appear to be more "LADA" (Type 1.5), as I'm losing weight (BMI 18.6 now), I'm getting worse (latest Hba1c - 71), and the drugs I'm on aren't working (Jardiance 25mg with breakfast; which makes me pee SO MUCH!!!), Merformin 1000mg, 1 with breakfast , one with dinner.

I'm very slim, active, and whilst I've not been *perfect* with my food choices at all times, I am trying and am basically grazing on nuts now!

I've just started wearing a CGM (Freestyle Libre2) on my arm, first week (a free trial), and the readings are shocking & eye opening - my mmol goes up from 9-10 on waking to 15 - 17mmol 2 hours after breakfast! But as a high metabolism active person, I simply cannot go "without" breakfast.....

I was sent to hospital just after Xmas with a spike of 21 & 22 mmol, and they discharged me after testing for Ketones (negative). This was a big shock to me.

I'm desperate for advice, & to know if my Hbc1c & daily readings are really terrible, as my Practice has now given up on me & referred me to the "top specialist" in Sheffield; I'm waiting for the referral letter to come through.

I was/am a fit runner, rock climber: I've run for England in my youth (orienteering), but (from an autoimmune point of view) I had SEVERE ME/cfs in my 30's, and a short relapse in 2021 (now back in remission). ME/cfs destroyed my life, but I am asymptomatic with my Diabetes, which is strange as I gather I'm really quite bad. Eyesight, feet, etc are all normal as is my BP, HR, liver function etc. I realise I do need to focus on diabetes now or my future looks bleak.

I would love to hear some wise words. And what to do next. Thanks! I attach some pics, including my daily pattern graph, and also typical (today, in fact) spike post-breakfast, which I understand is truly dreadful....... also my last 12 years Hba1c's.

Hi @philm64 , I hope that you don't mind me jumping in on your thread, I certainly don't have any answers, but couldn't help noticing some similarities between your situation and mine, and also those of @Antje77 , and also some differences!

I found this thread whilst searching and it seems perhaps a useful place to drop my tale, both for me, and for any other long-time lurkers, such as I have been up until now..

I was diagnosed in 2018 with a HbA1c of 119 (mmol/mol). With a BMI in the low 20s and an active lifestyle I was quickly referred to Endocrinology, I guess that I'm a Coeliac, and my mother is LADA also helped!

GAD, ICA, IA-2 and ZnT8 tests were all performed, and all came back negative. Over the next 10 months of low carb/keto dieting and a greatly increased exercise regime I dropped to a HbA1c of 37.1 (mmol/mol). GAD, ICA, IA-2 and ZnT8 tests were all performed again, and all negative again. Thereafter considered atypical type 2 and discharged from Endocrinology with the instruction to get myself re-referred if my GP HbA1c was > 48 (mmol/mol) (6.5% to be precise!)

Despite maintaining the diet and exercise, a BMI of 19ish, and body fat of 13.5%ish, attempts to knock it into remission were unsuccessful and I bumbled around in the pre-diabetic range for years; 42-48 mmol/mol. Nothing changed until May '24 when my HbA1c came back as 64 mmol/mol. GP added Glicazide to my ongoing Metformin prescription and I went back to Endocrinolgy. Since then:

HbA1c of 43 and 46 (mmol/mol)
GAD, ICA, IA-2 and ZnT8 remain negative
C-Peptide measured Dec '24 and was found to be 450, and again in Dec '25 and had dropped to 353. (Presumably this is pmol/L but no units were given!) I go back again at the end of the year. I'll get my HbA1c done again via the GP in July.

I only personally measure by fingerprick, and only habitually in the early (fasted) AM in a good month my average is about 6mmol/l, in a bad month about 7mmol/l. I log everything I eat and all of my exercise. It feels like things are slowly getting worse despite now being the same waist size as I was when I was 17 back in 1989!

Having said ALL of that, I actually managed my first ever hypo a couple of weeks ago! Credit where it's due, the GP surgery has been great in warning about the risks of this since I've been on glicazide, and I worked out what might be going on very quickly.

As a final point, in response to @Antje77 , yes, it's very easy to get results from tests done via the GP in the UK, the app is really very good. I've found it much more challenging to get results from the Endocrinology dept of the hospital however. In fact, I've only been able to do so by asking the GP who has visibility, but does not put them into my record! The NHS really doesn't talk to itself as well as it should - a very fragmented organisation.

Once again, apologies for posting all of this here, I realise it may have been misjudged!

 

[philm64]

Hi @philm64 , I hope that you don't mind me jumping in on your thread, I certainly don't have any answers, but couldn't help noticing some similarities between your situation and mine, and also those of @Antje77 , and also some differences!

I found this thread whilst searching and it seems perhaps a useful place to drop my tale, both for me, and for any other long-time lurkers, such as I have been up until now..

I was diagnosed in 2018 with a HbA1c of 119 (mmol/mol). With a BMI in the low 20s and an active lifestyle I was quickly referred to Endocrinology, I guess that I'm a Coeliac, and my mother is LADA also helped!

GAD, ICA, IA-2 and ZnT8 tests were all performed, and all came back negative. Over the next 10 months of low carb/keto dieting and a greatly increased exercise regime I dropped to a HbA1c of 37.1 (mmol/mol). GAD, ICA, IA-2 and ZnT8 tests were all performed again, and all negative again. Thereafter considered atypical type 2 and discharged from Endocrinology with the instruction to get myself re-referred if my GP HbA1c was > 48 (mmol/mol) (6.5% to be precise!)

Despite maintaining the diet and exercise, a BMI of 19ish, and body fat of 13.5%ish, attempts to knock it into remission were unsuccessful and I bumbled around in the pre-diabetic range for years; 42-48 mmol/mol. Nothing changed until May '24 when my HbA1c came back as 64 mmol/mol. GP added Glicazide to my ongoing Metformin prescription and I went back to Endocrinolgy. Since then:

HbA1c of 43 and 46 (mmol/mol)
GAD, ICA, IA-2 and ZnT8 remain negative
C-Peptide measured Dec '24 and was found to be 450, and again in Dec '25 and had dropped to 353. (Presumably this is pmol/L but no units were given!) I go back again at the end of the year. I'll get my HbA1c done again via the GP in July.

I only personally measure by fingerprick, and only habitually in the early (fasted) AM in a good month my average is about 6mmol/l, in a bad month about 7mmol/l. I log everything I eat and all of my exercise. It feels like things are slowly getting worse despite now being the same waist size as I was when I was 17 back in 1989!

Having said ALL of that, I actually managed my first ever hypo a couple of weeks ago! Credit where it's due, the GP surgery has been great in warning about the risks of this since I've been on glicazide, and I worked out what might be going on very quickly.

As a final point, in response to @Antje77 , yes, it's very easy to get results from tests done via the GP in the UK, the app is really very good. I've found it much more challenging to get results from the Endocrinology dept of the hospital however. In fact, I've only been able to do so by asking the GP who has visibility, but does not put them into my record! The NHS really doesn't talk to itself as well as it should - a very fragmented organisation.

Once again, apologies for posting all of this here, I realise it may have been misjudged!

Hi YellowM, thanks for the reply, much appreciated, wow hba1c of 119 is insane! But i can't see me getting mine down to under 50 any time soon - unless i get given insulin, which is my hope.

As I said my BMI is already very low and I also do a lot of sport. I was on Gliclazide for a while but that's now stopped & I'm on the Metformin and the extra "Jardiance". I think they help - but not enough.

My last hypo was 2015 when v sick with CFS (like "M.E.") - think it was 3.5mmol? Was fine in 30mins after sweet tea, biscuits, banana, chocolate etc. (but not fine with the ME/cfs which is a real life destroyer).

I'm nearing the end of my 2-week trial on the Freestyle Libre2, it's been so informative, and I would like to carry on, but at £100 per month it's too much. Prick tests just dont' give me the info I need. So I will ask (when i see the consultant) if they can fund it - I think Type 1 diabetics get it on the NHS, and I think I'm "weird" enough to justify the cost. I think if they wont' fund it, & start me on eg. insulin, I'll pay for it myself, as I do need to know what is happening.

Right now I have terrible, terrible chillblains - saw a GP this morning and he tested my feet for diabetes bloodflow & sensitivity & they were "fine" - but the chillblains are not, and he said the diabetes will mean they will struggle to heal now. I am gutted, and in 24/7 pain.

Am amazed you got the Hba1c down to <40. I attach my sad chart (I'm a slight data nerd, which can come in useful!), which shows my sorry state of affairs over the past 12 years.....

Cheers Phil

 

[Outlier]

Chilblains - rub Vick into the affected areas. Works a treat.

 

[lovinglife]

Chilblains - rub Vick into the affected areas. Works a treat.

Vick rub is amazing for feet in general. Great moisturiser & the menthol in it is great as an anti bacterial treatment. My podiatrist recommended it for my big toenail that was growing in. My nails curl because I’ve psoriasis & it keeps them soft enough to stop them curling

 

[Hopeful34]

Chilblains - rub Vick into the affected areas. Works a treat.

Can you rub Vick on when the chilblains have split the skin @Outlier as I've got terrible ones on my hands.

 

[Hopeful34]

Vick rub is amazing for feet in general. Great moisturiser & the menthol in it is great as an anti bacterial treatment. My podiatrist recommended it for my big toenail that was growing in. My nails curl because I’ve psoriasis & it keeps them soft enough to stop them curling

Not heard of that @lovinglife as I'm in a similar situation with all my nails.