Did my GP lie to me..?

[LonelyFatGuy]

My GP told me categorically that he couldn't order me either the GAD antibodies test, or the C peptide test, and that if I wanted them (of course it was me who mentioned them in the first place) he would have to send me to hospital to their diabetic clinic; a thing that until today I was unaware of the existence of.

Just reading the first page here on the forum though, I seem to be seeing at least a couple of people who claim to have received these tests through their GP.

Am I misunderstanding something on here, did my GP lie to me, or is he just incompetent..?

He also claimed that the tests would make 'no difference' and proceeded to prescribe me a new medication. Shouldn't he be concerned about properly diagnosing my type of diabetes..?

 

[ert]

My GP told me categorically that he couldn't order me either the GAD antibodies test, or the C peptide test, and that if I wanted them (of course it was me who mentioned them in the first place) he would have to send me to hospital to their diabetic clinic; a thing that until today I was unaware of the existence of.

Just reading the first page here on the forum though, I seem to be seeing at least a couple of people who claim to have received these tests through their GP.

Am I misunderstanding something on here, did my GP lie to me, or is he just incompetent..?

He also claimed that the tests would make 'no difference' and proceeded to prescribe me a new medication. Shouldn't he be concerned about properly diagnosing my type of diabetes..?

Hospital diabetes specialists order and interpret c-peptide and antibody tests. GP's mostly look after type 2 diabetics. My GP team don't deal with type 1's at all. Or course, there may be some GP's with more experience of type 1's if there is no access to a specialist. These tests are not ones from the dropdown NHS lists my surgery orders.

 

[Seacrow]

GPs can order these tests, but only on request from a doctor from a hospital clinic. It's the same for a number of other specialised tests (repeated PTH is one). So no, he didn't lie, but he doesn't appear to be going out of his way to be cooperative.

To be fair, it is possible that both these tests would tell you nothing. The GAD test result being negative tells you only that that particular auto immune reaction is not occurring. If it is strongly positive it indicates type one, but if you've been on medication a while and not gone into DKA it is unlikely you are type one. That leaves type 1.5, LADA, where the GAD result could be anything. The GAD test is helpful if done immediately after diagnosis (not done on the NHS due to cost).

The c-pep tells you how much insulin you are making. For a type one this could be anything from low to zero, for a type two it can be zero to extremely high. So if your result is extremely high, it confirms type two, but otherwise tells you nothing.

Honestly, if medication is working and your blood glucose is not excessively high, then you are likely type two with a tiny chance of 1.5. I would guess your doctor is unwilling to 'waste' nhs time and money when he is confident in his own diagnosis. But... you have a right to a second opinion, and if you feel strongly enough you can request to be referred to a specialist for a confirmed diagnosis.

 

[ert]

But... you have a right to a second opinion, and if you feel strongly enough you can request to be referred to a specialist for a confirmed diagnosis.

You have to meet the criteria for a referral on the NHS. https://www.england.nhs.uk/rightcare/products/pathways/diabetes-pathway/

 

[barrym]

I'm inclined to agree with the GP when he says the treatment would be the same either way. Or at least from what I know. I was obsessed with finding out when diagnosed, and eventually got a GAD test, only for it to be 'inconclusive' - trying to prove a negative or some such.

My consultant, who I really rate, said "what does it matter?". She was right. I still have to carb count, do MDI, and curse at the unpredictability of the damned disease. Wearing a different badge would make any of it easier.

Do what you have to do to the best of your ability, have a chocolate biscuit (or two) when things go wrong, and start again with a clean 'mental' sheet.

No offence intended.

 

[Daibell]

GPs can order these tests, but only on request from a doctor from a hospital clinic. It's the same for a number of other specialised tests (repeated PTH is one). So no, he didn't lie, but he doesn't appear to be going out of his way to be cooperative.

To be fair, it is possible that both these tests would tell you nothing. The GAD test result being negative tells you only that that particular auto immune reaction is not occurring. If it is strongly positive it indicates type one, but if you've been on medication a while and not gone into DKA it is unlikely you are type one. That leaves type 1.5, LADA, where the GAD result could be anything. The GAD test is helpful if done immediately after diagnosis (not done on the NHS due to cost).

The c-pep tells you how much insulin you are making. For a type one this could be anything from low to zero, for a type two it can be zero to extremely high. So if your result is extremely high, it confirms type two, but otherwise tells you nothing.

Honestly, if medication is working and your blood glucose is not excessively high, then you are likely type two with a tiny chance of 1.5. I would guess your doctor is unwilling to 'waste' nhs time and money when he is confident in his own diagnosis. But... you have a right to a second opinion, and if you feel strongly enough you can request to be referred to a specialist for a confirmed diagnosis.

My understanding is that for a T2, the C-Peptide will always be above the T1 higher limit. If the result is below the T1 higher limit you will be T1/LADA.

 

[Seacrow]

You have to meet the criteria for a referral on the NHS. https://www.england.nhs.uk/rightcare/products/pathways/diabetes-pathway/

Yes.... for a referral to a specialist. You are still entitled to a second opinion from a different doctor.

By the way, this document also states all T1 diagnosed patients should have a meeting with a diabetic psychologist as soon as possible, and be offered structured education (DAFNE etc.) within 4-6 weeks. So I wouldn't rely too heavily on what it says actually happening.

 

[Seacrow]

My understanding is that for a T2, the C-Peptide will always be above the T1 higher limit. If the result is below the T1 higher limit you will be T1/LADA.

No, that's wrong. If a T2 has been on the 'pancreas bashing' drugs, or been T2 for ages, then the beta cells can overwork and wear out. As they stop producing insulin and die, the c-pep goes lower and lower. So a T2 can have c-pep values anywhere from zero (all beta cells died) to extremely high.

However for a NEW diabetic, yes, T2 are likely to have high c-pep values.

I have severe insulin resistance, but my c-pep has never been measured above 'normal' levels. Can't rely on it for diagnosis.

 

[Mrs HJG]

Hi @LonelyFatGuy As you will hear said a lot around here, it seems it all depends where you are, who you see first and how you present, and everyone is different. I have spent the last 2 months trawling this site, forums and the whole of Google for answers.

When my HbA1c came back at 129.5 amongst a load of other tests for non-specific bleugh feelings including weight loss and thirst/peeing, my surgery diabetes nurse suspected T1, referred me immediately to the hospital team, and a couple of days later they disagreed and said most likely T2 as having symptoms for so long and HbA1c so high, if I was T1 I would probably not be here anymore. They ordered the C-pep and antibody tests just to make sure, the surgery diabetes nurse could not authorise this.

C-pep came back first and I was told 'definitely T2' as level was high, but a couple of weeks later when the 3 antibody tests came back, they were all positive. The NHS wait to see the consultant is over 12 months! My surgery diabetes nurse could not see the results, I had to tell her, as the NHS systems are not joined up, and my GP has to run everything through the diabetes nurse too, he has no say, so I suspect your GP was not lying.

(I am going private as I can't bear not having a label!) I also want my records to be correct and treatment and options to reflect a proper diagnosis, even if current treatment remains unchanged, I want the correct options and opportunities immediately as/when needed. I am currently self-diagnosed as LADA, as that is the best fit.

The fact that no-one on here has presented with both high C-pep, all positive antibodies and such high HbA1c without ketones means I am anxious for an endocrinologist to have a look at the results. So I really get your desire to have a diagnosis that you are confident in.

Why do you think your T2 diagnosis is wrong? Just bare in mind you could end up with more questions than answers and a lot of waiting if you are referred for the tests!

 

[KK123]

(I am going private as I can't bear not having a label!

I agree with you, it's not just a 'label' as if that doesn't matter, it's about knowing what health condition you have. Matters not whether the treatment is the 'same' or not, what I would need to know is will I die without insulin or can I manage it with diet or in some other way. If we are talking about type 1, type 2, type 3 or who knows how many other variants, then I want to know so I know what I am dealing with. There are many types of cancer but I am sure people need to know which type they have. Fine if the results end up inconclusive but up until that point it's simply not good enough for a GP/Consultant to guess.

 

[Mrs HJG]

I agree with you, it's not just a 'label' as if that doesn't matter...

In the coming months it could matter very much too for eligibility for CGM, free covid testing or even booster-booster jabs! Not to mention simple prescriptions for testing strips or, in my case, who might actually take some responsibility for ordering follow up blood tests and 'education'. Labels matter!

 

[Jaylee]

In the coming months it could matter very much too for eligibility for CGM, free covid testing or even booster-booster jabs! Not to mention simple prescriptions for testing strips or, in my case, who might actually take some responsibility for ordering follow up blood tests and 'education'. Labels matter!

Hi, any "progression" onto insulin may help you with the above. Even as a mid aged T1 myself (from 8 years old.) the jabs were a wait in line.
& the CGM was a struggle to get on script. My endo agreed after 2 years of self funding, I was up to my elbows in bird carcasses for a job & blood letting for testing was inappropriate at times, in the end...

Prescription exception certificates are reapplied for every 5 years? Unless over 60? (Don't quote me on the over 60 bit. Few more years to go..)
Then as an insulin user there is the "fitness to drive" & 3 yearly (for me.) DVLA "DIAB1" forms to fill?

I hope this clarifies just one perspective...

 

[Mrs HJG]

Hi, any "progression" onto insulin may help you with the above. Even as a mid aged T1 myself (from 8 years old.) the jabs were a wait in line.
& the CGM was a struggle to get on script. My endo agreed after 2 years of self funding, I was up to my elbows in bird carcasses for a job & blood letting for testing was inappropriate at times, in the end...

Prescription exception certificates are reapplied for every 5 years? Unless over 60? (Don't quote me on the over 60 bit. Few more years to go..)
Then as an insulin user there is the "fitness to drive" & 3 yearly (for me.) DVLA "DIAB1" forms to fill?

I hope this clarifies just one perspective...

With the NICE review being published at the end of March, eligibility will hopefully change, with charging for covid tests, as a 3rd of severe covid cases are diabetic, and to be eligible for certain drug trials you need a positive PCR result, being on record as the correct type will be very different than even currently, hence very important.

 

[LonelyFatGuy]

Thanks for all the replies / info / insights / philosophies.

I was a bit frustrated and angry when I posted that yesterday. It just seems a bit strange to me that 1) my GP doesn't have the authority to request these tests, and 2) that he doesn't seem to care that the initial diagnosis of T2 might be wrong.

The reason for questioning the diagnosis was mainly down to the complete ineffectiveness of Metformin. I spent the last 16 weeks on 2000mg of the stuff, hoping for at least a small reduction in A1C, only to have it increase from 60 to 66... (all other factors remaining the same). I was sitting around 60 before I started taking any Metformin, about 18 months ago. When I asked him to explain this ineffectiveness to me he couldn't. He started talking about how Metformin works with my existing insulin to do it's thing, so I suggested maybe there isn't any insulin then, otherwise surely it would be doing something for me..?

Long story short he said he couldn't order the tests, and it doesn't matter anyway, then he proceeded to prescribe me what I believe is an SGLT2 inhibitor, but I didn't catch the name of it. And I forgot to ask if I'm taking that in addition to the Metformin, or can I stop the Metformin since it seems to be a complete waste of time..? He phoned me in the morning so I was tired and off-guard.

Are these SGLT2 things any good then..? Or am I just going to end up with thrush for no reason..?

 

[catinahat]

Welcome @LonelyFatGuy
Metformin is mild drug that for some can be quite helpful but for others , myself included is nothing more than a laxative. It works by limiting the amount of glucose your liver releases in to your blood and it is supposed to help a little with insulin resistance. What it does not do is alter the amount of glucose in your blood that you get from food.
When we digest carbs they are converted to glucose and deposited into our blood to be used for energy.
As type 2,s our bodies have become resistant to insulin, which means our insulin is less effective at removing the glucose and our blood sugar levels remain higher than they should.
The answer is to limit the amount of carbs in your diet, base your meals around meat, fish, eggs, healthy fats, cheese and fresh above ground vegetables and salad's

 

[Daibell]

Hi. My surgery had to request both GAD and C-peptide from the local county diabetes clinic. They lost my C-peptide test and said it didn't matter anyway as the GAD was negative. I challenged that and was called by the consultant and we had a useful long chat. He issued another C-peptide test. He also said my diabetes type wasn't that important as long as my treatment was correct. I had to disagree that T1 is taken more seriously by medics and when I'm in the old peoples' home I'm sure it becomes very relevant! The consultant also agreed that although my C-peptide indicated T2 he accepts I was behaving as T1 being slim and with poor insulin control and he treats me such which is good. This indicates the C-peptide test (urinary one) isn't that reliable

No, that's wrong. If a T2 has been on the 'pancreas bashing' drugs, or been T2 for ages, then the beta cells can overwork and wear out. As they stop producing insulin and die, the c-pep goes lower and lower. So a T2 can have c-pep values anywhere from zero (all beta cells died) to extremely high.

However for a NEW diabetic, yes, T2 are likely to have high c-pep values.

I have severe insulin resistance, but my c-pep has never been measured above 'normal' levels. Can't rely on it for diagnosis.

OK, yes I agree with you where a T2 has had drugs like Gliclazide for too long (as I did) and the beta cells have died off one way or another. In that case the person is effectively LADA and no longer T2 and the C-Peptide will be low. I know some will say a T2 cannot become T1 but if the beta cells are gone then that defines a T1 and no longer T2.

 

[Seacrow]

OK, yes I agree with you where a T2 has had drugs like Gliclazide for too long (as I did) and the beta cells have died off one way or another. In that case the person is effectively LADA and no longer T2 and the C-Peptide will be low. I know some will say a T2 cannot become T1 but if the beta cells are gone then that defines a T1 and no longer T2.

Oh boy, the definition discussion again

Is a T2 someone with insulin resistance, or someone with insulin resistance and high insulin production?

Is a T1 someone with no insulin production, or someone with an autoimmune reaction killing off their beta cells?

My diabetes consultant goes with how the diabetes is treated to define type. So, you may have no beta cells, no insulin production, but if you have high insulin resistance you are type two (subcategory: type two on insulin). Type ones, therefore, require insulin, but at considerably lower doses.

It does make sense for doctors to split types one and two this way, because the kind of treatment is then directly linked to the diabetes type (and more importantly, if on insulin, the dosage is directly linked to the type). Take me, at one point I was GAD+, and zero c-pep but if I had been treated as a type one I would have been in hospital with DKA. I have severe insulin resistance and need to be treated as type two (on insulin).

I guess I'm saying, that for practical purposes no insulin production AND lack of insulin resistance defines a type one. What do you think?

 

[HSSS]

OK, yes I agree with you where a T2 has had drugs like Gliclazide for too long (as I did) and the beta cells have died off one way or another. In that case the person is effectively LADA and no longer T2 and the C-Peptide will be low. I know some will say a T2 cannot become T1 but if the beta cells are gone then that defines a T1 and no longer T2.

Really not at all convinced those are accurate definitions of type.

You seem to be basing it entirely on insulin production alone, and ignoring insulin resistance and cause of the loss of insulin as relevant factors.

a type 2 no longer producing insulin does not become type 1 (or LADA) by virtue of taking insulin in all the medical descriptions I’ve seen. It may be, in type 2, that beta cells are not “gone” at all but maybe “hibernating” or “suffocated by fat” and able to be resurrected by the right treatment. And even if they aren’t IR is still a huge part of type 2 regardless of treatment method - not such an established issue for type 1 across the board.

Type 1 usually requires an autoimmune cause (without IR).
LADA is a slow adult onset variant of type 1
Type 2 is typified by high insulin levels (at least in the early years) and high insulin resistance
and diabetes caused by drugs/surgery etc would be what’s termed as secondary or type 3 and depending on the specific cause/problem if behaves more like type 1 or 2. (Eg steroids increase IR whereas surgery might prevent insulin production)

 

[Mrs HJG]

Really not at all convinced those are accurate definitions of type.
Type 1 usually requires an autoimmune cause (without IR).
LADA is a slow adult onset variant of type 1
Type 2 is typified by high insulin levels (at least in the early years) and high insulin resistance
and diabetes caused by drugs/surgery etc would be what’s termed as secondary or type 3 and depending on the specific cause/problem if behaves more like type 1 or 2. (Eg steroids increase IR whereas surgery might prevent insulin production)

So herein lies the rub - I have high levels of C-pep/insulin production, and therefore suspected high insulin resistance at diagnosis, (HbA1c 129.5), but also positive GAD and other antibodies, and other T1 identifiers.

All definitions I have found online say T1/LADA due to the antibodies, or maybe Double Diabetes, as you can be T1/LADA and have IR too for a period. (I know you can also be T1 without the antibodies but that's a whole other story!). My BG has been at normal levels (4-7) since a month in, on 2g Metformin only following 3 weeks on <10 units insulin a day.

The fact I have antibodies means my pancreas could fail at any point and I can never be 'in remission/reversed' like a T2; or maybe I can fix the T2 bit with diet and exercise, and possibly have already, but will never stop being T1/LADA even though I am not (yet) on insulin, so just to be mindful of keeping my BG low and level until things 'develop'.

Have I got this wrong? I think I am getting more confused by the day. Apologies if I am hijacking this thread.

 

[HSSS]

So herein lies the rub - I have high levels of C-pep/insulin production, and therefore suspected high insulin resistance at diagnosis, (HbA1c 129.5), but also positive GAD and other antibodies, and other T1 identifiers.

All definitions I have found online say T1/LADA due to the antibodies, or maybe Double Diabetes, as you can be T1/LADA and have IR too for a period. (I know you can also be T1 without the antibodies but that's a whole other story!). My BG has been at normal levels (4-7) since a month in, on 2g Metformin only following 3 weeks on <10 units insulin a day.

The fact I have antibodies means my pancreas could fail at any point and I can never be 'in remission/reversed' like a T2; or maybe I can fix the T2 bit with diet and exercise, and possibly have already, but will never stop being T1/LADA even though I am not (yet) on insulin, so just to be mindful of keeping my BG low and level until things 'develop'.

Have I got this wrong? I think I am getting more confused by the day. Apologies if I am hijacking this thread.

And your situation just proves even if we have some general definitions of type there will always be atypical or complicated cases (as there is with all conditions). I hope you get some answers soon.


I’d agree everything I've read agrees positive antibodies means type 1/LADA. Whereas negative isn’t definitive for anything really.