C-Peptide results

[DaveB]

@DaveB - very interesting to hear. Can I ask what your C-Peptide was out of interest? I had chickenpox just before original diagnosis at age 42 which did make me wonder if it had either over triggered my immune system causing beta cell decline or as you say that the chickenpox virus itself caused beta cell decline? The consultant said she had never heard of chickenpox causing this, but I still wonder if an auto immune attack was triggered from having the virus, but it appears not all beta cells were destroyed? Who knows, especially after such a long time now!

Like you the Metformin and Glibenclamide (a sulphonylurea agent similar to Gliclazide) had no effect, in fact my HbA1c climbed from 71 to 144 in the 5 years I was on these oral meds, which is what precipitated the move to insulin.

I am feeling more inclined to stay on insulin for the fact that it works well for me with no side effects (other than the odd hypo if I am too heavy-handed) and gives me the flexibility to eat what I want at any time I want and cope with variable amounts of exercise. As you say, oral meds would not give me this flexibility. So for me it seems a bit of a backward step.

I am so grateful that my DSN is understanding and has gone out of her way to arrange a face to face appointment with me on Monday to discuss all this. She has also said that there is no pressure for me to come off insulin, so this has given me some reassurance. Whether I am T1 or T2 is almost irrelevant to me, if I need insulin to keep my HbA1c and TIR in good control and it allows me to live my life as I wish then this is more important and is the deciding factor as far as I am concerned.

Hi again. I can't find my C-Peptide results but I believe they were just a bit lower than yours. The reason I believe my beta cell damage was caused by a virus was that shortly before my diabetes came out of the blue i offered myself as drug test volunteer and was rejected by the drug company as I had a high white cell count and was told I had inflammation going on somewhere. I had also had a mild abdominal ache for 6 months. I did nothing about this as a I felt fine and then sudden weight loss etc and the DB diagnosis. The effect of viruses on the pancreas is little understood by the medical profession and the fact that the end result is the same as antibodies.

 

[Eternal422]

Thanks @DaveB - sounds a possibility that’s what happened to me, although there are obviously some beta cells still which are producing some insulin. This is where type classification seems a bit artificial to me. For whatever reason I’m not producing enough insulin so I need exogenous insulin to supplement. This is assuming that I don’t have much insulin resistance, which is possibly true given that Metformin didn’t make any difference in the time I was on it.

Trouble was during those years I also suffered from depression so my head wasn’t coping with diabetes on top of everything else and the GP didn’t pursue any action for my rising HbA1c until the 5th year when he added Glibenclamide which didn’t make any difference either, hence resulting in finally going onto insulin which very quickly brought everything under control.

 

[PattiEvans]

Thanks @DaveB - sounds a possibility that’s what happened to me, although there are obviously some beta cells still which are producing some insulin. This is where type classification seems a bit artificial to me. For whatever reason I’m not producing enough insulin so I need exogenous insulin to supplement. This is assuming that I don’t have much insulin resistance, which is possibly true given that Metformin didn’t make any difference in the time I was on it.

Trouble was during those years I also suffered from depression so my head wasn’t coping with diabetes on top of everything else and the GP didn’t pursue any action for my rising HbA1c until the 5th year when he added Glibenclamide which didn’t make any difference either, hence resulting in finally going onto insulin which very quickly brought everything under control.

As I have said in another thread, your case sounds like classic LADA or late onset T1 in adults. In the USA the Joslin study did tests on T1s of 50 years plus and discovered that some of them were still producing some endogenous insulin. Perhaps you could point your Consultant to the study. See https://pmc.ncbi.nlm.nih.gov/articles/PMC2963543/

 

[Lucyr]

As I have said in another thread, your case sounds like classic LADA or late onset T1 in adults. In the USA the Joslin study did tests on T1s of 50 years plus and discovered that some of them were still producing some endogenous insulin. Perhaps you could point your Consultant to the study. See https://pmc.ncbi.nlm.nih.gov/articles/PMC2963543/

I’m not sure that would help? If you look at the graph of cpeptide results from the study the highest result was less than half of @Eternal422 result, at 0.3 nmol on the graph (with that being very much an outlier outside of the normal range in the graph) vs 0.642 for Eternals result, so sharing the study might just reinforce that you’re out of any T1 range.

 

[PattiEvans]

You have had tests fairly recently Lucy so probably are more up to date with it all than when I had min. ISTR at the time there was a lot of confusion between nanograms per milliliter (ng/mL), or nanomoles per liter (nmol/L). Which was why my GP couldn't say what my results were at the time. I had to wait about 3 months until my next appmt with the consultant.

 

[Eternal422]

Yes, I saw that graph, but there is also mention that if fasting C-Peptide was > 200 pmol/L (converting from the paper’s use of nmol/L) then response to a mixed meal tolerance test (MMTT) then post prandial C-Peptide reaches up to 800 pmol/L for some of the cohort that still had some insulin production :

 

[Leadinglights]

You have had tests fairly recently Lucy so probably are more up to date with it all than when I had min. ISTR at the time there was a lot of confusion between nanograms per milliliter (ng/mL), or nanomoles per liter (nmol/L). Which was why my GP couldn't say what my results were at the time. I had to wait about 3 months until my next appmt with the consultant.

It can be very confusing when results are expressed with different units which in some cases can actually be exactly the same but others will need conversion which needs information which would not be available to the person looking at the results./ As a biologist we were always having to do conversions from different small units and it sometimes did my head in and then to have to explain it to students was a nightmare.

 

[Lucyr]

ISTR at the time there was a lot of confusion between nanograms per milliliter (ng/mL), or nanomoles per liter (nmol/L)

The study uses nmol/L, we use pmol/L, so the conversion is eg 200 to us is 0.2 in the study

 

[Eternal422]

Just had my hospital DSN appointment and she said that given the test results it is more than likely that I am T2, but insulin production is somewhere in the middle, not low enough to be T1 but more like a T2 whose pancreas has failed to some extent as it does with progression of the condition.

We discussed oral therapies but her opinion was very much that I need to continue solely on insulin. The oral meds all have side effects and the risk/benefit is not sufficient to consider them. She felt that my control and HbA1c would worsen under oral therapies and that even after a short trial on them I would need to return to insulin in the near future anyway. She did also say, as my MDI insulin therapy was working well then why make a change for really no benefit.

She said even though it is more than likely I am T2, I definitely need insulin and there is no issue at all in keeping the Libre.

She even prescribed Abasaglar to replace my Levemir which is apparently being discontinued here in the UK in 2026 (I knew it had already been discontinued in the USA) and changed my prescription for the Libre 2+. I did ask what the consultant would say as it was her who suggested a trial on Metformin and Dapagliflozin, but the DSN said not to worry, nothing would be changed and she would let the consultant know that I would continue on insulin.

The slight fly in the ointment is that as I do still produce some insulin, albeit not loads, it may not be totally predictable and therefore my results with injected insulin may vary. Although up to now things have been as predictable as they can be and I respond to the amount of insulin I inject in a fairly predictable way.

 

[dannybgoode]

That sounds like good news overall and a bit of a relief I assume.

And given everything that's been explained to you it also seems the most sensible route to take so hats off to your DSN 🙂

 

[Eternal422]

That sounds like good news overall and a bit of a relief I assume.

And given everything that's been explained to you it also seems the most sensible route to take so hats off to your DSN 🙂

Definitely! I’m breathing a big sigh of relief! The DSNs at the hospital are fantastic and always available by phone or email if you need help. Also, I heard yesterday that I’ve got a place on the BBDL Intermediate course starting in January. So a great start to Christmas for me!

Have you heard yet about your type classification?

 

[rebrascora]

So pleased you have that sorted and I hope it now gives you peace of mind.

I very much hope your DSN is wrong about Levemir. I will be asking for Humulin I if it is being discontinued but want to stay on Levemir till the bitter end.
Abasaglar is a generic Lantus ie Insulin Glargine, so cheaper. Did she advise on when to take it ie. just once a day and morning or evening or splitting the dose similar to Levemir?

 

[dannybgoode]

Have you heard yet about your type classification?

Nope. Antibody tests so not back. Had a note thorough follow up call with one of the DSNs today which was good. She's very happy with my progress and has booked me in for a face to face on new year's eve so I'll get to see a DSN and a dietician. Hopefully the results will be in then.

I think I have my standard 'new to all this ****' call tomorrow as well so there's just a chance they've come in at some point today.

Will just keep on as I have been doing until I'm told otherwise 🙂

 

[Eternal422]

So pleased you have that sorted and I hope it now gives you peace of mind.

I very much hope your DSN is wrong about Levemir. I will be asking for Humulin I if it is being discontinued but want to stay on Levemir till the bitter end.
Abasaglar is a generic Lantus ie Insulin Glargine, so cheaper. Did she advise on when to take it ie. just once a day and morning or evening or splitting the dose similar to Levemir?

Thank you! I feel like a big weight has been lifted off me.

My DSN was certain about Levemir being discontinued in 2026 (I had asked earlier this year when news of it being discontinued in the USA came out and then she said they hadn’t heard anything yet, so it sounds like they have now heard of an end date here).

She said to take the same dose of Abasaglar as I do for Levemir. It should have a duration of 24 hours instead of Levemir’s 18. I must admit I still suspect Levemir tailing off for me in the evenings so hopefully this will be an improvement. So, just one shot of 28U once a day in the evening for the Abasaglar. Once the pharmacy gets it in I’ll swap over and see how it goes.

 

[mashedupmatt]

I did see something regarding the discontinuation of Levemir which is very disaapointing as it's been much better for me splitting the dose (which it is designed for!) - better than the Lantus I was on initially (and I will be asking for the Humalin I, same as you @rebrascora and also intend to use it till the bitter end!) - good luck with the change though and glad they have set you mind at ease before Christmas @Eternal422 🙂

What you need to know about insulin supply issues in the UK

What’s the situation? There have been some temporary shortages involving insulin used by people living with diabetes in the UK. However, this does not mean that there is a shortage of insulin generally. In all cases, suitable alternatives are available. Fiasp FlexTouch

www.diabetes.org.uk

Levermir info on the DUK site...

 

[Lucyr]

I did see something regarding the discontinuation of Levemir which is very disaapointing as it's been much better for me splitting the dose (which it is designed for!) - better than the Lantus I was on initially (and I will be asking for the Humalin I, same as you @rebrascora and also intend to use it till the bitter end!) - good luck with the change though and glad they have set you mind at ease before Christmas @Eternal422 🙂

What you need to know about insulin supply issues in the UK

What’s the situation? There have been some temporary shortages involving insulin used by people living with diabetes in the UK. However, this does not mean that there is a shortage of insulin generally. In all cases, suitable alternatives are available. Fiasp FlexTouch

www.diabetes.org.uk

Levermir info on the DUK site...

“Healthcare professionals have been asked not to switch people from Levemir to an alternative insulin until the guidance on suitable alternatives has been issued. This is to make sure that the discontinuation in 2026 doesn’t affect the supply of other insulins now.”

So you shouldn’t be being switched from levemir now @Eternal422

 

[Eternal422]

So you shouldn’t be being switched from levemir now @Eternal422

Just read that, interestingly the hospital pharmacy at Warwick where I see my DSN nor our more local Stratford had any Abasaglar, so we’ll see how things pan out. My DSN didn’t seem worried about switching me but I guess if everyone gets switched in one go it could cause some supply issues.

 

[goodybags]

Glad your appointment went well with your DSN @Eternal422

 

[rebrascora]

Well that now gives me a big question to ask my consultant tomorrow. Really quite devastated that is is official, as I really love Levemir and moving to Humulin I (if I can get them to agree to that replacement) will mean my NovoPen Echo will no longer be useful and I really find the half unit function helpful for my evening dose as well as the memory function. @Robin and @Bruce Stephens are you guys aware of this? We had all hoped it was just going to be restricted to the US but seems they are extending the discontinuation. I'm gutted!! Having Levemir was one of the reasons I didn't/don't want a pump.

 

[Robin]

Well that now gives me a big question to ask my consultant tomorrow. Really quite devastated that is is official, as I really love Levemir and moving to Humulin I (if I can get them to agree to that replacement) will mean my NovoPen Echo will no longer be useful and I really find the half unit function helpful for my evening dose as well as the memory function. @Robin and @Bruce Stephens are you guys aware of this? We had all hoped it was just going to be restricted to the US but seems they are extending the discontinuation. I'm gutted!! Having Levemir was one of the reasons I didn't/don't want a pump.

Yes, thankyou for thinking of me, it’s cropped up on the morning thread. definitely a heart sink moment, I’d resist going back onto Lantus or biosimilar, Lantus caused me so many night time hypos, that was the reason I swapped to Levemir, and I haven’t looked back. Also, as you say, it doesn’t use the Novopens. If I gave Tresiba a go, that probably means a lot of readjustment, which will be a pain.