If you were offered a c-peptide test

[helli]

I can't answer your question @Lucyr but wanted to send you a virtual hug
When I was diagnosed (19 years ago last week), there was no talk about c-peptide or GAD tests. I was lucky to have a gp who looked beyond my age (mud 30s) and say I was "too thin to have type 2 so it must be Type 1". I have subsequently learnt things could be more complex (e.g.tofi t2) but glad she was right and I had none of the uncertainty which seems to go with newly identified high blood sugars as an adult nowadays.

 

[Inka]

The benefits of finding out that cpeptide is low are obvious (save money on sensors) and probably worth the risks of other results, I just was surprised by my nervousness at the idea of having the test when I really thought about it. It came up in an appointment today, if I get to a point of having results I’ll share them but won’t say much more about it for now.

If my cpeptide is normal or high then would have to consider MODY apparently, I’d not really heard of MODY so made a separate post about that. There's potential implications for family if it was MODY I guess.

If the cpeptide was high my main concern would be if insulin was removed from my prescription because i produce enough insulin. I get high bgs and ketones within a couple days of missing insulin and don’t fancy fighting a battle to keep insulin.

I had my C Peptide and Type 1 antibodies done more than 20 years after diagnosis to check for MODY. In your position, I’d definitely have the test @Lucyr Although the test idea was initially stressful, it’s now brought me clarity and knowledge.

 

[EmmaL76]

Yes, I saw your post about MODY although I think it is an unlikely option since there is no family history and it is very rare but also, from what I have read, it is unusual for MODY to need insulin. MODY testing is also much more expensive than Type 1 testing I believe and takes months to get results, so I am not sure what you would gain from that, either positive or negative. ie no guarantee of sensors on prescription, in fact possibly less likely that Type 2 on MDI.

They surely could not stop your insulin if C-pep result came back high. You are still having to overcome insulin resistance and there are plenty of other Type 2s on insulin and it isn't as though you don't really make an effort to manage your diabetes well and you have been following the advice of an NHS dietician to help you lose weight. I really can't see what else they can expect you to do...... but I can understand your concern, because like all of us, insulin keeps us alive and any possible threat to supply is scary. I really think that last consultant has knocked your self confidence in dealing with this and it is so unfair!

HNF1A-MODY is the most common type of MODY, this type does cause very raised blood sugars I believe and would require insulin. MODY GCK second most common is very mild and typically wouldn’t. There are about 16 strains but the above mentioned 2 make up almost 100% so the others are very very rare.

 

[Lucyr]

I have booked the cpeptide test. It took me a bit by surprise how easy it was (I asked, he said yes), only took me by surprise as after 14 years of asking and hearing no you come to expect a no not a yes!

Depending on the results, and a consultants opinion on them, other tests may be considered to check for other types like the MODYs

 

[EmmaL76]

I have booked the cpeptide test. It took me a bit by surprise how easy it was (I asked, he said yes), only took me by surprise as after 14 years of asking and hearing no you come to expect a no not a yes!

Depending on the results, and a consultants opinion on them, other tests may be considered to check for other types like the MODYs

Ahh well done Lucy, I know these things can be unsettling but it’s a bit of fear of the unknown. They may test for gad antibodies before MODY testing (it’s cheaper) as presence of those may rule out MODY. Although I am antibody positive they did still test me for MODY but the nurse at the MODY department said that was very unusual.

 

[Lucyr]

Ahh well done Lucy, I know these things can be unsettling but it’s a bit of fear of the unknown. They may test for gad antibodies before MODY testing (it’s cheaper) as presence of those may rule out MODY. Although I am antibody positive they did still test me for MODY but the nurse at the MODY department said that was very unusual.

I completely forgot to ask about results or next steps so I’ll ask about what happens next at my next appointment in a couple of months.

 

[Inka]

I completely forgot to ask about results or next steps so I’ll ask about what happens next at my next appointment in a couple of months.

Usually they do initial tests ((C Peptide and possibly antibodies) and then, depending on the result of those tests, decide whether to test for MODY (because it’s expensive).

 

[Northerner]

I have booked the cpeptide test. It took me a bit by surprise how easy it was (I asked, he said yes), only took me by surprise as after 14 years of asking and hearing no you come to expect a no not a yes!

Depending on the results, and a consultants opinion on them, other tests may be considered to check for other types like the MODYs

An interesting discussion 🙂 Some people may recall my situation. I was diagnosed in 2008 as T1 after severe DKA and an 8-day stay in hospital. I was due to run a marathon that week, so I was very fit and active throughout my adult life (49 at diagnosis) and had never been overweight. With hindsight, I had had some symptoms for a few months prior to diagnosis (thirst, toilet, lost a bit of weight) but put these down to my training. I then lost 18 pounds in the 3 days prior to dx. I was diagnosed T1 and put on lantus and novorapid, TDD of 65 units. After about 18 months my insulin requirements began to reduce, especially my basal. FF to 4 years post diagnosis and I had reduced the lantus from 20 units to 2 and decided to try without, as I was still waking in the low 4s. My consultant said it was a blip and I'd probably need to go back on basal before too long. That was nearly 11 years ago 😱 I still need novorapid with any carbs.

My consultant was always promising me a c-peptide test, but never got round to doing it, it was only when I mved house that a new consultant decided to do one. The results came back that I was producing 'a reasonable amount of insulin' and that it was more than 97% of T1s. Interestingly, that means that 3% produce more! 🙂 I was concerned they might try to switch me from insulin to medication e.g. gliclizide and reclassify me as Type 2, meaning I would probably lose my Libre sensors, but I argued that I had never exhibited any characteristics of Type2, my diagnosis was classic T1, it was 4 years before I stopped needing basal, and I have always managed my BG really well. MODY was ruled out. I am now classified as 'T?, treated as Type 1' - nothing has changed regarding my treatment. I should add that my close association with this forum since the beginning means that I have come across maybe half a dozen others who are very simmilar to me in their presentation.

The upshot is that the answer is not always clear-cut and there may be people who don't neatly fit any established category - me being one, and perhaps you being another. If you find you need a T1 regime in order to manage your diabetes well and maintain a good quality of life, then whatever the outcome of the c-peptide test, you should receive that treatment 🙂 A new category - Type Weird!

 

[Lucyr]

Usually they do initial tests ((C Peptide and possibly antibodies) and then, depending on the result of those tests, decide whether to test for MODY (because it’s expensive).

Yes it is the cpeptide to start with then consultant to recommend any further tests or not. The part i forgot is I didn’t ask how/when I’d find out results.

 

[Lucyr]

An interesting discussion 🙂 Some people may recall my situation. I was diagnosed in 2008 as T1 after severe DKA and an 8-day stay in hospital. I was due to run a marathon that week, so I was very fit and active throughout my adult life (49 at diagnosis) and had never been overweight. With hindsight, I had had some symptoms for a few months prior to diagnosis (thirst, toilet, lost a bit of weight) but put these down to my training. I then lost 18 pounds in the 3 days prior to dx. I was diagnosed T1 and put on lantus and novorapid, TDD of 65 units. After about 18 months my insulin requirements began to reduce, especially my basal. FF to 4 years post diagnosis and I had reduced the lantus from 20 units to 2 and decided to try without, as I was still waking in the low 4s. My consultant said it was a blip and I'd probably need to go back on basal before too long. That was nearly 11 years ago 😱 I still need novorapid with any carbs.

My consultant was always promising me a c-peptide test, but never got round to doing it, it was only when I mved house that a new consultant decided to do one. The results came back that I was producing 'a reasonable amount of insulin' and that it was more than 97% of T1s. Interestingly, that means that 3% produce more! 🙂 I was concerned they might try to switch me from insulin to medication e.g. gliclizide and reclassify me as Type 2, meaning I would probably lose my Libre sensors, but I argued that I had never exhibited any characteristics of Type2, my diagnosis was classic T1, it was 4 years before I stopped needing basal, and I have always managed my BG really well. MODY was ruled out. I am now classified as 'T?, treated as Type 1' - nothing has changed regarding my treatment. I should add that my close association with this forum since the beginning means that I have come across maybe half a dozen others who are very simmilar to me in their presentation.

The upshot is that the answer is not always clear-cut and there may be people who don't neatly fit any established category - me being one, and perhaps you being another. If you find you need a T1 regime in order to manage your diabetes well and maintain a good quality of life, then whatever the outcome of the c-peptide test, you should receive that treatment 🙂 A new category - Type Weird!

This is why I leave my diabetes type as other, there’s no type weird or undecided option

 

[Deleted member 21371]

This is why I leave my diabetes type as other, there’s no type weird or undecided option

I thought most were "weird"
Or at least completely different to each other.
Diabetes seems to be a very wide spectrum.

 

[Eternal422]

I think I would have the C-peptide test anyway. It will tell you if you are still producing insulin at least. But if you need insulin to keep your BG in check then you need it, regardless of how your diabetes is classed.

The deciding factor for me in causing a change of diagnosis from T2 to T1 was more on my history of Metformin not doing anything in the early years and then around 15 years of basal bolus at quantities similar to a typical T1 (if such a person exists!) with my BG reacting to carbs and insulin as though I don’t have unusually high IR and not producing any of my own insulin.

The change in diagnosis still knocked me a bit, even though I had suspected for years, but don’t let that put you off. It is worth knowing for sure as the treatment options and pathway is different for T1 and, as you say, at least you’ll get Libre on prescription.

 

[grovesy]

There is an article on the main site discussing Antibody testing, and discussing some recent research results. Also how many are categorised the wrong type.

 

[PattiEvans]

Lucy, as you may recall, I spent over 8 years misdiagnosed as T2 on insulin purely because of my age at diagnosis and despite ketones showing. The person who gave this diagnosis had never met me... it was done over a telephone conversation between the GPs nurse and the local DSN. I fought very hard to get that C-Peptide and it made a massive difference when it transpired I was T1 (as advised by the endo). Not only was I able to get better tech (Libre and pump) but HP attitudes changed markedly - this shouldn't be so, but nevertheless it was. So my advice would be "go for it".

I've always thought you were a very untypical T2. For a start T2s do not usually show ketones.

 

[sugary123]

Due to some weird ongoing with my T1D 27 years after being diagnosed my doctor wants me to get the cpep test done to check for MODY and anything else
I'm also somewhat confused as I need to rake insulin quick acting on waking and always run high if less or no insulin but I'm going ahead and having the test next week

Can I ask ... my doc said to have breakfast but not take any quick acting... should I still take my long acting on waking or omit that too ??

 

[Lucyr]

Due to some weird ongoing with my T1D 27 years after being diagnosed my doctor wants me to get the cpep test done to check for MODY and anything else
I'm also somewhat confused as I need to rake insulin quick acting on waking and always run high if less or no insulin but I'm going ahead and having the test next week

Can I ask ... my doc said to have breakfast but not take any quick acting... should I still take my long acting on waking or omit that too ??

Mine said take long acting as normal. Eat carbs at the meal before test and don’t take fast acting at that meal. Need bg to be over 8.5 at time of the test so test your bg just before you go to the appointment. You can correct once the blood has been drawn.

 

[Lucyr]

Really annoying how every thread gets taken over by certain people arguing the same things repeatedly. I asked if you’d take the test or not, not about studies and evidence of results.

 

[bulkbiker]

I asked if you’d take the test or not

yes definitely...

there you go and apologies..

 

[DaveB]

Really annoying how every thread gets taken over by certain people arguing the same things repeatedly. I asked if you’d take the test or not, not about studies and evidence of results.

Yes and I did take the test.

 

[Lucyr]

Yes and I did take the test.

Some posts were split off so my grumble above probably didn’t make any sense when you read it