Consultant grading for diagnosis - update

[Ronancastled]

C-peptide test results are classed within 3 ranges/values.

Normal range

• The normal range for a c-peptide test is: 0.51 to 2.72 nanograms per millilitre (ng/mL)
• This may also be expressed as: 0.17-0.90 nanomoles per litre (nmol/L)

The above is quoted from this site here
https://www.diabetes.co.uk/c-peptide-test.html

Check the units on your C-Peptide test as with a value of 7.52 you're over producing insulin if anything.
I'm no professional but that might be worth bringing up.

 

[Widgets]

@Mrs HJG - I hope you've managed to get some traction with the NHS this morning.

Seconding various suggestions in here - GP, nurse at GP, PALS are all good places to start. Also, if you can find a phone number for them consultant's secretary. They are usually the most useful people to get on the right side of.

As a former NHS professional here - being a very polite, very firm, squeaky wheel tends to work well - a role I play for my BlokeShape quite a lot. I refer to it as 'phoning up and being middle class' at people.

Best wishes - it's a horrible situation you're in.

 

[EllieM]

Check the units on your C-Peptide test as with a value of 7.52 you're over producing insulin if anything.
I'm no professional but that might be worth bringing up.

If you look at her previous thread or the first post in this one this is why her original T1 diagnosis was changed to T2. Then the extreme GAD results,
No reason why a T2 can't develop LADA?

 

[EllieM]

No reason why a T2 can't develop LADA?

And yet another reason why she needs an endocrinologist to opine on her weird test results.

 

[Antje77]

I am due a second HbA1C in March (at 3 months from the 129), and I'll be chasing for that to be taken dead on 90 days! Oh I have been going through today's conversations in my head all night - I am determined not to be fobbed off.

What I meant is that until they have a second hba1c done, the information they have is the combination of a very high hba1c plus positive antibodies. Which is automatically an alarming result and should have had you seen an endo pronto.

With your current beautiful BG's, your next hba1c might well show in the non diabetic range, giving them even less reason to hurry your appointment

If you look at her previous thread or the first post in this one this is why her original T1 diagnosis was changed to T2. Then the extreme GAD results,
No reason why a T2 can't develop LADA?

I'm with @EllieM on this one.

 

[Mrs HJG]

Check the units on your C-Peptide test as with a value of 7.52 you're over producing insulin if anything.
I'm no professional but that might be worth bringing up.

Helpfully there are no units on the Exeter results!

 

[Mrs HJG]

@Mrs HJG - I hope you've managed to get some traction with the NHS this morning.

Seconding various suggestions in here - GP, nurse at GP, PALS are all good places to start. Also, if you can find a phone number for them consultant's secretary. They are usually the most useful people to get on the right side of.

One step forward, 2 steps back - initial agreement to get the referral from the doctor, then second thoughts as it could muddy the waters bringing in someone else, so local diabetes nurse will email the hospital team to see if I can be seen sooner - waiting to see how that goes!

 

[Mrs HJG]

With your current beautiful BG's, your next hba1c might well show in the non diabetic range, giving them even less reason to hurry your appointment.

Time to crack out the biscuits then... I wish!

 

[Widgets]

One step forward, 2 steps back - initial agreement to get the referral from the doctor, then second thoughts as it could muddy the waters bringing in someone else, so local diabetes nurse will email the hospital team to see if I can be seen sooner - waiting to see how that goes!

There really needs to be an 'Aaaargh!' react on here!

 

[Dark Horse]

Helpfully there are no units on the Exeter results!

That is because it is a ratio - it's called the C-peptide to creatinine ratio or UCPCR. The values @Ronancastled referred to were for different tests which did not include creatinine. Exeter's page about UCPCR is here:- https://www.exeterlaboratory.com/test/c-peptide-urine/

To put things into context, for some people it is extremely difficult to know whether they have type 1 or type 2, even with C-peptide and antibody testing. The important thing is not the label but whether the treatment is correct for the current circumstances. There is no treatment for the autoimmune process causing destruction of islet cells in type 1 so if your blood glucose levels and HbA1c are normal/near normal on your current treatment there is no urgency even if you were finally diagnosed with type 1. Some people with type 1 have quite a long prodromal period in which their blood glucose levels can be treated without insulin. However, if your blood glucose levels start to rise markedly then you should go back to your GP as that would suggest that your treatment should change.

 

[Mrs HJG]

That is because it is a ratio - it's called the C-peptide to creatinine ratio or UCPCR. The values @Ronancastled referred to were for different tests which did not include creatinine. Exeter's page about UCPCR is here:- https://www.exeterlaboratory.com/test/c-peptide-urine/

The 7.52 is the 'raw' C-peptide
Creatinine 9.5
Ratio 0.79

To put things into context, for some people it is extremely difficult to know whether they have type 1 or type 2, even with C-peptide and antibody testing. The important thing is not the label but whether the treatment is correct for the current circumstances. There is no treatment for the autoimmune process causing destruction of islet cells in type 1 so if your blood glucose levels and HbA1c are normal/near normal on your current treatment there is no urgency even if you were finally diagnosed with type 1. Some people with type 1 have quite a long prodromal period in which their blood glucose levels can be treated without insulin. However, if your blood glucose levels start to rise markedly then you should go back to your GP as that would suggest that your treatment should change.

I realise the 'current' treatment would be the same as it is working well BUT I am in the system as T2. This will not change until I am seen by a consultant; I would not be any list (good or bad) that T1s would be notified for eg. additional covid vaccines, free CGM if NICE change the recommendations in April, being called for pneumonia jabs, asked to take part in research - all sorts! If am hit buy a bus and assumed T2 in 6 months it could be a very different picture.

And I cannot overstate the peace of mind of having a correct diagnosis. I cannot deal with mental limbo, and envy those who can.

 

[NicoleC1971]

Thank you @Antje77 & @EllieM Yep my BG is staying pretty stable mid-4s & 5s, (post-tea sometimes, but rarely, high 6s if I have experimented with something new/bad), so I am not particularly worried at this minute, but not knowing if it could suddenly go horribly wrong or will take a while is a constant, all-consuming thought. Every test makes me worry I'll see higher figures than yesterday.

I was told that only the consultant could diagnose 'genetic' diabetes, which I have taken to mean T1/auto-immune as opposed to T2/lifestyle diabetes, but yes, a bit more info from the nurse would have been helpful.

It's so frustrating as I was given c-peptide and GAD tests immediately when others seem to have had to fight to get them, but then when the results came back and weren't quite as expected they have withdrawn their interest. From the LADA forum posts it seems most have a battle to get the tests at all, not to have the tests but no-one willing to actually tell me what they mean and think is going on.

I know nothing about what could happen or to look out for if I am ill, (I didn't feel ill when my BG was in the 20s!), if I should have a pneumonia jab this winter, how paranoid I should be about catching covid, or anything else, whether I should have some insulin in the fridge just in case, or taking a low dose to preserve the beta cells I have... I asked the hospital team but they won't answer without the diagnosis - what a bonkers way to run the NHS.

I will be asking everyone everything tomorrow but suspect I will end up being my pleasant happy self on the the phone and getting nowhere, as I am scared if I p*ss them off too soon, I'll never get a call back. If this was my electricity supplier I would be 'asking to speak to the manager, swapping to another provider and being one of 'those' customers'!

Firstly it s not on you to feel guilty about seeing the same NHS consultant privately. Sadly this is increasingly what will happen when queues get too long for people like you who aren't in acute need but do need to get on with their lives via a diagnosis.
Secondly if what you are doing is working without insulin then why do you need the correct label from God/ aka the Consultant? I would also want to know but in the meantime I'd be focussing like you are on great low carb diet and creating/maintaining autoimmune health,
Thirdly genetic diabetes has no meaning for me other than there's a rare type that is very heritable where the patient makes insulin but her body doesn't recognise it. Type 1 is only weakly inheritable thank goodness. Forgive my ignorance if I've got that bit wrong but you are using your own insulin for now and that's good news.
So your test results are a 'known unknown' for now but I am unsure whether you will get definitive answers even privately but could look at who is best locally (see if a DSN can recommend e.g. who would you send your mum/sister/daughter to in my situation?).
If you can fund it get a flash glucose monitor like Abbott's Freestyle Libre to pick up on abnormal blood sugars e.g. 4-7 in range for fasting then back into that range at 2 -4 hours after a meal. The odd excursion isn't acutely dangerous but if you constantly run high then that will give you the answer that you need insulin with the help of your GP to get you an urgent referral.
As for covid /pneumonia whilst the risk is greater for any kind of diabetic that i still small if you don't have age and other illnesses against you too, you can only do what most others are doing now to mitigate (jabs, vitamin D, being healthy) and live with the risk as best you can. You are not in the extremely clinically vulnerable category just because you are diabetic and are still of working age for example.

 

[Mrs HJG]

why do you need the correct label from God/ aka the Consultant? I would also want to know but in the meantime I'd be focussing like you are on great low carb diet and creating/maintaining autoimmune health,

See my answer above to @Dark Horse - it makes a lot of difference to me, my family and my work. Local nurse will deal with T2, not T1, and as my records have not been updated she has, late this afternoon, had to accept it is not for the hospital to deal with me for now; apparently I should be eternally grateful that I am allowed a glucose monitor, strips and lancets on prescription!

So your test results are a 'known unknown' for now but I am unsure whether you will get definitive answers even privately but could look at who is best locally (see if a DSN can recommend e.g. who would you send your mum/sister/daughter to in my situation?).

I would sell my dodgy pancreas to science to enable my mum/sister/daughter to go private immediately.

If you can fund it get a flash glucose monitor like Abbott's Freestyle Libre to pick up on abnormal blood sugars.

No funds for that, although if I can't afford to eat, it'll cut out the chance of any BG spikes!

 

[searley]

Here I am again ready for a good moan/cry - I called the NHS booking team this afternoon and was told that my diagnosis referral to the consultant had been graded as 'routine', and currently in excess of 12 months waiting time for an appointment.

I have put in for call backs from both my local diabetes nurse and the hospital team tomorrow as neither will take responsibility, won't refer me to the nutritionist or answer my questions until I have an official 'genetic' diagnosis from the consultant.

Background - I was confirmed via c-peptide as T2 after initially thought T1, then T2 by nurses; insulin started, then stopped; 4x metformin and lowish carb diet for now and average BG 5.2 for January, and then boom, positive antibody results (all 3) to put everything up in the air again and a referral sent from the hospital nurse team after my manic phone call (and their quick chat with the same consultant!).

I can't wait; the last 8 weeks have been hell for me and all those around me; so I will be asking for a referral letter from my doctor to try and get funding from my work's friendly society, (similar to private health cover but only available for some conditions and if NHS timescales are unreasonable, ie. 5 weeks!), in the hope that I can get answers.

I know if I jump the queue and see the same consultant I will feel a bit 'bad' but mostly relieved, but I do wonder if I had not been tested until New Year and gone hell for leather on the Christmas treats and ended up in hospital, whether I would have been seen sooner?

Have I fallen down a gap in the 'grader's understanding' or is this normal? I have had to stop googling as I can't find anyone with similar figures/situation to mine and its doing me no good

HbA1c 129.5
C-peptide 7.52
Creatinine 9.5
Ratio 0.79
GAD Ab 220.8u/ml
ZnT8 Ab 895.6u/ml
1A2 Ab 1664.1u/ml

To be honest if you are still producing some insulin then going all out would only give you high numbers and not send you to hospital... its when you stop producing insulin and you body starts to starve and eat body fat, that the problems start.. this way you can actually have lower bg but high ketones and end up in hospital..

Either way.. I think remaining as controlled as you can... keeping intouch with your care team and seeing what they can do to speed things up

Good luck, hope you get the answers you are after

 

[Mrs HJG]

To be honest if you are still producing some insulin then going all out would only give you high numbers and not send you to hospital... its when you stop producing insulin and you body starts to starve and eat body fat, that the problems start.. this way you can actually have lower bg but high ketones and end up in hospital..

Either way.. I think remaining as controlled as you can... keeping intouch with your care team and seeing what they can do to speed things up

Good luck, hope you get the answers you are after

Thanks, local nurse now begrudgingly my contact as NHS record remains as T2, and she will get the doctor to refer me for the friendly society. Not sure if it was a request or warning but told to contact her if BG goes above 10, she didn't say 'and not before' out loud but I know she was thinking it!

I lost 3st in 5 months before the initial diagnosis, not sure I want to lose more, but I'm keeping an eye of the scales too.

 

[Dark Horse]

The 7.52 is the 'raw' C-peptide
Creatinine 9.5
Ratio 0.79

The ratio is the important number. It doesn't matter (except to the laboratory) what units the C-peptide was measured in as you cannot use that value on its own - it's not valid except as the ratio given (which has no units).

I would not be any list (good or bad) that T1s would be notified for eg. additional covid vaccines, free CGM if NICE change the recommendations in April, being called for pneumonia jabs, asked to take part in research - all sorts!

None of these is critical in the early stages of type 1. As the years go on, the risk of complications increases, hence the offer of vaccines, but there is unlikely to be any harm from a delay of a year or so.

And I cannot overstate the peace of mind of having a correct diagnosis. I cannot deal with mental limbo, and envy those who can.

It may not be possible to get a 'correct' diagnosis at this stage. I understand that it's frustrating but perhaps you could direct that energy into things which will benefit you, whatever the final diagnosis is, such as increasing the amount of exercise you do and learning more about both conditions?

 

[Mrs HJG]

It may not be possible to get a 'correct' diagnosis at this stage. I understand that it's frustrating but perhaps you could direct that energy into things which will benefit you, whatever the final diagnosis is, such as increasing the amount of exercise you do and learning more about both conditions?

Unfortunately my brain and 24hr day are not enough to cope with so much uncertainty for over a year and definitely not able to take on board everything about all the types of diabetes; one is more than enough, so I need to know where to concentrate my efforts. If I wanted or could learn everything, I would re-train as an endo and get paid for the pleasure

People/Google referring in such broad terms as 'high', 'soon' or 'unlikely' is no help to me. So although the consensus here comes over that consultants/doctors/nurses know nothing, I still have faith that someone who studied medicine and is paid the big bucks to ultimately save lives (yeah I know, and save money long and short-term), albeit working under extremely stretched NHS constraints and/or privately, might just know more than the average Joe Bloggs or I could take onboard, and point me in the right direct for 'me'.

So for all the great and not so great advice received here and elsewhere, I need my medical records to be correct, to know what is and could be happening in my body, what I should tell the DVLA (again) for example, and what support I can have, which is all dependent on a correct diagnosis. Your local NHS diabetes network might not work like that, but unfortunately mine does.

I cannot can drift along with the flow for a year hoping it will all be OK because it was for a lot of other people. I am stressed, continually upset and upsetting my family, my work is suffering and I have many covid-delayed plans in the next 6 months that I need to know if they are going to be practical or still an option.

My situation is obviously different to yours, and with the lack of responses to another thread for anyone with similar presentation to me, it's definitely not the same as the majority or even the LADA minority; and maybe in a few years time I'll forget what the early days were like and tell others 'it will be fine, this and that are not important, don't worry etc etc', but honestly right now my world has imploded and getting a diagnosis, or even actually look at my results and speak to me and tell me to my face why it could all be left unsaid for a year, can only be damage limitation and a help to me.

Does anyone already have the user name 'The Ranting Diabetic Woman'?

 

[HSSS]

It might seem very obvious but is it worth double checking with the booking team/secretary that it really is a year’s wait. This is way way outside all the timeframes (I know covid is messing hugely with them). It’s not unheard of for an ill informed person to answer the phone.

I’m renowned in my family for cutting through the BS of many organisations (not infalliable but I do better than many). I’d start with a quick call to the booking line to check. Then the secretary. I’d be quoting the very high hba1c and GAD results as needing urgent expert care to both, and asking who (names please) has made the assessment it is safe to leave a likely type 1 a year without an appointment and an almost certain misdiagnosis of type 2. I’d also want to know what “genetic” diabetes actually means to the person using this phrase. Is it type 1 in which case the wording would normally be autoimmune not genetic. Or do they mean MODY? Or something else?

Extreme politeness but extreme firmness. Simply keep repeating your questions til they are answered. Ask for managers and supervisors if the person on the phone doesn’t know or can’t answer. take names and ask for dates when you can expect to hear by. Write everything down you are told on the phone with dates and times and names. I’d be asking who is responsible if I DKA through lack of appropriate care. I’d email my nurse, practice manager and GP as well as the consultant and booking team, cc’ing them all in on the email for them all to see you are resolute in needing answers.

As said above, be that squeaky wheel, be “middle class” on the phone, be firm, etc etc.

 

[Mrs HJG]

It might seem very obvious but is it worth double checking with the booking team/secretary that it really is a year’s wait.

Unfortunately I checked with the secretaries and the booking team, so did one of the hospital nurses, my local nurse even emailed the consultant and he couldn't give a better timescale!

I’m renowned in my family for cutting through the BS of many organisations (not infalliable but I do better than many).

Me too - but because this is my health, I have backed off a little, phone providers I eat for breakfast (as long as they are low carb).

I’d be quoting the very high hba1c and GAD results as needing urgent expert care to both, and asking who (names please) has made the assessment it is safe to leave a likely type 1 a year without an appointment and an almost certain misdiagnosis of type 2.

You'd think - I get all the sympathetic noises when I explain and just get apologies that's how it is right now.

I’d also want to know what “genetic” diabetes actually means to the person using this phrase. Is it type 1 in which case the wording would normally be autoimmune not genetic. Or do they mean MODY? Or something else?

I’d be asking who is responsible if I DKA through lack of appropriate care. I’d email my nurse, practice manager and GP as well as the consultant and booking team, cc’ing them all in on the email for them all to see you are resolute in needing answers.

Keeping those in reserve for when I call in the PAL guns too.

I am hoping to get the 'yay or nay' from my health cover early next week, as the referral has been sent for consideration, once I know, I can focus on which way to go.