Some advice on blood tests please

[fiona35]

I won’t bore you all to death with my history but my Diabetic team won’t confirm 1 way or the other if I might be LADA or Type 2.
They’ve done a non fasting c-peptide & a random glucose, the glucose is abnormal and the c-peptide is satisfactory.
They’ve told me that they will treat me as a LADA with regards to Basal Bolus regime, targets, carb counting but I will still be listed as a Type 2 Insulin Dependent on my records and they’ll review me in 3 months.
I’ve asked if I can have further blood tests done, namely antibodies but they said there’s no need and you also can’t have those tests whilst taking insulin.
Can anyone advise if it is true that I can’t pay private to have these blood tests because I am on Insulin. Also are there any other blood tests to ask about?
I also don’t know whether to pay private to see someone or just leave it as it is, I’ve managed so far in my life as a Type 2 but part of me would like to know for definite.
Would be grateful for any opinions, thanks.

 

[Antje77]

I’ve asked if I can have further blood tests done, namely antibodies but they said there’s no need and you also can’t have those tests whilst taking insulin.

Nonsense.
Being on insulin does not affect antibody testing.

If they treat you as a T1 (LADA) they must be thinking you might be T1.
If the treatment works well, there is no real reason, healthwise, why it would make a difference what's in your records.

However, there may be a difference in what support you can get, easier to get a CGM or pump when you're listed as T1. But also less hassle with prejudiced HCP's who sometimes take T1 more serious than T2, and worse, sometimes believe T2s are to blame for their own condition.

Wrong and very unfair to every T2, but if you're T1 and listed as one, it may make a difference in the future healthcare you'll receive.

 

[EllieM]

They’ve done a non fasting c-peptide & a random glucose, the glucose is abnormal and the c-peptide is satisfactory.

I'm puzzled as to what "satisfactory" means. Any chance of getting some figures to attach to those tests.....? (Forum rules don't allow us to diagnose but if you had the figures you could at least show them to another doctor).

 

[Fenn]

May I ask have you tried a keto diet? Did it work for you?

 

[AndBreathe]

I won’t bore you all to death with my history but my Diabetic team won’t confirm 1 way or the other if I might be LADA or Type 2.
They’ve done a non fasting c-peptide & a random glucose, the glucose is abnormal and the c-peptide is satisfactory.
They’ve told me that they will treat me as a LADA with regards to Basal Bolus regime, targets, carb counting but I will still be listed as a Type 2 Insulin Dependent on my records and they’ll review me in 3 months.
I’ve asked if I can have further blood tests done, namely antibodies but they said there’s no need and you also can’t have those tests whilst taking insulin.
Can anyone advise if it is true that I can’t pay private to have these blood tests because I am on Insulin. Also are there any other blood tests to ask about?
I also don’t know whether to pay private to see someone or just leave it as it is, I’ve managed so far in my life as a Type 2 but part of me would like to know for definite.
Would be grateful for any opinions, thanks.

Fiona, assuming you are in the UK, you are entitled to have a second opinion on your treatment.

Yesterday I posted a few reasons why being categorized would be advantageous to you, and in that we cannot discount "knowing" what you're up against and having the potential to access more sophisticated forms of condition management, like the Libre and pump technology.

Why should you have to pay to manage your blood sugars (using the Libre) because your team can't be bothered to properly diagnose you? That sort of thing makes me SO angry.

I suggest you ask your GP to refer you for a second opinion.

A second opinion does not need to be done at the same hospital, or even in your same area. You can choose anywhere, and you are also able to ask for a named referral for your second opinion, so not only trust or hospital, but individual consultant. Just bare in mind that if you choose to have your second opinion in John O'Groats (and you live at Lands End,) that you will be responsible for getting to and from your appointments.

This is a system I used to get to the bottom of my errant thyroid gland, because the first consultant just sat back, clasping his hands across his stomach, stating he doubted he'd ever work out what was going on - causing me to be absolutely frozen to the bone, even in the Tropics. Not good enough. Frankly, I wanted to strangle him. How dare he consider my quality of life unimportant?

I did my research and decided where I wanted to go next.

I now have a firm diagnosis and am receiving appropriate treatment, thus improving both my health and importantly, my quality of life.

Sorry, but now is a time to be firm with your GP and dig deep into your resolve.

Think about it at least.

 

[fiona35]

I'm puzzled as to what "satisfactory" means. Any chance of getting some figures to attach to those tests.....? (Forum rules don't allow us to diagnose but if you had the figures you could at least show them to another doctor).

My c peptide was 1290 pnmol & random glucose was 21.2 mmol, these were taken an hour after eating.

 

[fiona35]

May I ask have you tried a keto diet? Did it work for you?

Yes I’ve tried that, I lost 6 stone but instead of my sugars reducing as I’d hoped and everyone telling me they would, they kept increasing so eventually we ran out of tablet options, hence I’m now on insulin.

 

[fiona35]

Fiona, assuming you are in the UK, you are entitled to have a second opinion on your treatment.

Yesterday I posted a few reasons why being categorized would be advantageous to you, and in that we cannot discount "knowing" what you're up against and having the potential to access more sophisticated forms of condition management, like the Libre and pump technology.

Why should you have to pay to manage your blood sugars (using the Libre) because your team can't be bothered to properly diagnose you? That sort of thing makes me SO angry.

I suggest you ask your GP to refer you for a second opinion.

A second opinion does not need to be done at the same hospital, or even in your same area. You can choose anywhere, and you are also able to ask for a named referral for your second opinion, so not only trust or hospital, but individual consultant. Just bare in mind that if you choose to have your second opinion in John O'Groats (and you live at Lands End,) that you will be responsible for getting to and from your appointments.

This is a system I used to get to the bottom of my errant thyroid gland, because the first consultant just sat back, clasping his hands across his stomach, stating he doubted he'd ever work out what was going on - causing me to be absolutely frozen to the bone, even in the Tropics. Not good enough. Frankly, I wanted to strangle him. How dare he consider my quality of life unimportant?

I did my research and decided where I wanted to go next.

I now have a firm diagnosis and am receiving appropriate treatment, thus improving both my health and importantly, my quality of life.

Sorry, but now is a time to be firm with your GP and dig deep into your resolve.

Think about it at least.

Thank you for your kind comments. When I spoke to my Aunts earlier, they also mentioned asking for a second opinion and I shouldn’t have to pay for it either! I guess it’s because I’m usually a quiet shy person that just gets on with things and accepts what is said, except this time I’m not happy about what had been said.
I will get in touch with my GP to ask to be referred for a second opinion.

 

[AndBreathe]

Thank you for your kind comments. When I spoke to my Aunts earlier, they also mentioned asking for a second opinion and I shouldn’t have to pay for it either! I guess it’s because I’m usually a quiet shy person that just gets on with things and accepts what is said, except this time I’m not happy about what had been said.
I will get in touch with my GP to ask to be referred for a second opinion.

You are entitled to a second opinion, via the NHS. It was my own GP who told me this.

The only thing I will say is you will potentially go onto a waiting list for your second opinion, so it might not be super fast.

the harsh reality is there has never, ever been a more important time for use to be our own strongest advocates.

 

[jonathan183]

How long ago where you first diagnosed ?

 

[EllieM]

My c peptide was 1290 pnmol & random glucose was 21.2 mmol, these were taken an hour after eating.

Can you double check the units? There should be a /L or /mL and it makes a big difference. Though am guessing the bg is mmol/L , there are a lot if differing measuring units for cpeptide.

And there are other types of diabetes than T1 and T2 which may need to be considered....

 

[Fenn]

Yes I’ve tried that, I lost 6 stone but instead of my sugars reducing as I’d hoped and everyone telling me they would, they kept increasing so eventually we ran out of tablet options, hence I’m now on insulin.

I am not trying to diagnose you but my path was exactly the same as yours eventually, my sugars did originally go back to normal levels after my huge weight loss and VLC but then I was trying to walk down an up escalator, nothing works, it’s very frustrating as the doctors and nurses didn’t believe me when I was telling them how hard I was working, sounds like you have a good reason to keep trying for them to look closer, best of luck.

 

[fiona35]

How long ago where you first diagnosed ?

Back in 2001. But it seems as I lost weight, my HBA1C kept going up, so I kept getting more medication which would work for about 6mths to a year and told I’m not working hard at it, and that’s how it’s been until recently when a DSN looked at the amount of weight I’d lost and couldn’t understand why 1 insulin shot a day wasn’t working for me when it worked for her other Type 2 Diabetics, in addition she commented your quite young to be on insulin already!
That’s when they changed everything around and put me on the Basal Bolus and since then my sugars have d become more manageable.
Then they did the two blood tests mentioned but wouldn’t do antibodies.

 

[fiona35]

Can you double check the units? There should be a /L or /mL and it makes a big difference. Though am guessing the bg is mmol/L , there are a lot if differing measuring units for cpeptide.

And there are other types of diabetes than T1 and T2 which may need to be considered....

I’ve just checked and the results were
C Peptide 1290pmol/L
Blood Glucose 21.2mmol/L
HBA1C was 58 mmol/mol

 

[jonathan183]

Back in 2001. ...
Then they did the two blood tests mentioned but wouldn’t do antibodies.

The longer since diagnosis the less likely antibody tests are to pick up abnormal levels. It is also possible that antibodies which are causing the problem are not detected by the antibodies tests.

 

[Daibell]

Hi. I have the same problem being listed as T2 but my consultant treats me as LADA. As my C-Peptide was just above the T1 limit he won't change my listing and I'm worried about my future care as T2 may not be taken so seriously even though I need insulin to survive. I was never overweight so never a 'proper T2. I went thru all the tablets and eventually even full dose Gliclazide had no effect. I'm afraid the medical profession have some strange ideas about diabetes and the classiification system is a mess. I did have a private C-Peptide many years ago which did show low insulin but not down into the T1 level at the time. A GAD test is not affected by taking insulin so a bit of ignorance there. I'm sure my LADA was caused by a virus hence not an auto-immune response but the medics are (wrongly?) rigid about that.

 

[Jiveyjane]

I won’t bore you all to death with my history but my Diabetic team won’t confirm 1 way or the other if I might be LADA or Type 2.
They’ve done a non fasting c-peptide & a random glucose, the glucose is abnormal and the c-peptide is satisfactory.
They’ve told me that they will treat me as a LADA with regards to Basal Bolus regime, targets, carb counting but I will still be listed as a Type 2 Insulin Dependent on my records and they’ll review me in 3 months.
I’ve asked if I can have further blood tests done, namely antibodies but they said there’s no need and you also can’t have those tests whilst taking insulin.
Can anyone advise if it is true that I can’t pay private to have these blood tests because I am on Insulin. Also are there any other blood tests to ask about?
I also don’t know whether to pay private to see someone or just leave it as it is, I’ve managed so far in my life as a Type 2 but part of me would like to know for definite.
Would be grateful for any opinions, thanks.

You can certainly have antibody tests when on insulin. Some doctors are reluctant to do them for some reason - probably cost.
It look me years to get a definitive diagnosis of type1. Eventually a supportive DSN managed to persuade my team to do the tests.

 

[Fenn]

My rediagnosis was after a c-pep test, I had no GAD, I had the opposite reaction from doctors they wouldn’t hear of me being type two even though I was overweight at diagnosis, I was a stereotypically T2 but they won’t have it, I don’t mind because I dont have to pay for Libre anymore.

 

[KevinH1964]

My rediagnosis was after a c-pep test, I had no GAD, I had the opposite reaction from doctors they wouldn’t hear of me being type two even though I was overweight at diagnosis, I was a stereotypically T2 but they won’t have it, I don’t mind because I don't have to pay for Libre anymore.

When I was diagnosed, 20+ years ago, at age 40, I was on insulin very quickly, and once I had my glucose under control, which led to a regrettably short honeymoon period, and my insulin requirements stabilized, they gave me a challenged c-peptide test, which showed almost zero naturally produced insulin, so Type 1. They waited for my insulin requirement to stabilise, it was initially lower once my blood glucose came down but crept up to my current levels over about 9 months before the challenged c-peptide, as they said in the early stages it would not be conclusive. I forget my first basel insulin but it was not terribly long duration so needed multiple shots per day, then Lantus reduced that to two shots per day and now Tresiba is a real once a day insulin. The total dose of Lantus and Tresiba was unchanged in 20 years, although I upped it when I had Covid for about a month. Bolus varies obviously with my food, but over the years I've kept a food and insulin dose diary and now have a pretty good feel for it. Avoid some rapid-carb meals (sugar faster than insulin), and don't eat too much protein (keeps releasing sugar after insulin has finished acting) in a single sitting.

 

[Ro9998]

Yes I’ve tried that, I lost 6 stone but instead of my sugars reducing as I’d hoped and everyone telling me they would, they kept increasing so eventually we ran out of tablet options, hence I’m now on insulin.

Diet plus exercise. I listened to Dr Unwin on Low Carb progt I like him he’s honest about his knowledge and own learning. I think they used words it’s a one two punch. Losing fat and reducing carbs Plus exercise. They have exercise vids.