Does anyone know what their C-peptide reading was?

[Lesleywo]

Sounds like you are LADA. I had a GAD test of over 2,000 18 months ago, my consultant said I was LADA. But some months back a diabetic specialist nurse read out my hospital notes to me, and there was no mention of LADA. Just T1 in honeymoon period. She too said I was LADA.... Just different terms used to define an early stage of T1.

Strangely, despite the GAD test of over 2,000, I am still not on insulin. The LCHF diet keeps my BG levels low, for now.

Unfortunately I have not had a c-peptide test..... My Dr says it would not help / make any changes to my diagnosis or treatment and thus it would be a waste of valuable NHS resource funding!!

Ian did you only ever have the one GAD test? I've had 3 - 519, 88 and 158, range under 10. Interestingly, my thyroid antibody tests now come back normal - I guess this is because the anti bodies have now pretty much destroyed my thyroid gland so there's nothing left to destroy.

 

[Brunneria]

Only the 2 for me so far thank god. But I have been told to look forward to pernicious anemia and rheumatoid arthritis!!!
I've had graves disease for 3 years and I'm currently awaiting a total thyroidectomy as my goitre is affecting my swallowing and my voice.

Hi,

You may be very interested in a recent post by @poshtotty where she attributes remission of her rheumatoid arthritis, and coming off the meds for it, to her low carb diet.

I'm (wildly guessing) that a similar diet may delay onset...

My personal experience is that very low carbing sorts out all sorts of random joint aches and pains that have been increasing for years. Including swollen finger joints. There is history of various types of arthritis in my family.

 

[Ian DP]

Ian did you only ever have the one GAD test? I've had 3 - 519, 88 and 158, range under 10. Interestingly, my thyroid antibody tests now come back normal - I guess this is because the anti bodies have now pretty much destroyed my thyroid gland so there's nothing left to destroy.

Only the one, Drs in the UK don't like doing them as they cost around £400 a time. I was lucky to get mine done, I read up about the test, and convinced my GP that I seemed not to have T2 symptoms.... I would have liked to have a c-peptide test done as well, but they said there was no benefit, as my treatment would not change.

 

[Lesleywo]

Only the one, Drs in the UK don't like doing them as they cost around £400 a time. I was lucky to get mine done, I read up about the test, and convinced my GP that I seemed not to have T2 symptoms.... I would have liked to have a c-peptide test done as well, but they said there was no benefit, as my treatment would not change.

Oh I see... pity because it would be interesting to see if the reading changes as time goes on. I have read varying reports as to whether the actual reading is indicative of the strength of attack .... some say yes, others say no. You're either positive or negative. I've given up trying to work it all out, it's al too much for my poor little brain!

 

[phoenix]

@Ian DP £400?
Not according to this from Oxford University Hospitals. Obviously you would then have to add on the cost of phlebotomy and the cost of sending the sample.

Cost

• UK NHS - 15 UKP
• International and Private - 20 UKP

http://www.ouh.nhs.uk/immunology/diagnostic-tests/tests-catalogue/gad-antibodies.aspx
For comparison it's very similar to what my lab charges in France for an HbA1c or a TPO antibody test (thyroid antibodies)

Haven't been able to find the cost of an NHS C peptide ( though found it for $33 in the US, £107 from a UK private provider)

What is much cheaper is a urine C peptide/creatinine test. (some GPS in the UK have heard of it because I remember a member on here having one once to see how much insulin that he was making )

It can also be used for people on insulin .It is a very good test to distinguish people on insulin who have been wrongly diagnosed and may actually have MODY. It can also be used at regular intervals to see how insulin is falling during a T1 honeymoon . Finally, it can be used to distinguish between T1 and T2 (in combination with antibody tests)
This explains how it can be used to determine insulin production(not sure that they have any data on it's use in LADA though) http://www.diabetesgenes.org/content/urine-c-peptide-creatinine-ratio

The test costs just £10.50 from Exeter
https://www.nbt.nhs.uk/sites/default/files/Urine C Peptide Creatinine Ratio.pdf

Reference ranges for C pep(serum) and GAD antibodies

GAD antibodies

One NHS pathology 'handbook' online interestingly suggests that in diabetes the levels are normally below 100U/ml but much higher in another disorder Stiff person syndrome.
( I have to say I've seen much higher levels than this mentioned in some papers but maybe different tests , different ranges and at times different units )
This test uses U/ml
http://www.southend.nhs.uk/pathology-handbook/test-directory/test-directory-g-index/gad-antibodies.
another NHS lab says
Glutamic Acid Decarboxylase Antibodies (GAD)
Numerical result reported. Normal Range 0 - 10 IU/ml
https://www.walsallhealthcare.nhs.uk/immunology-services.aspx#glutamic

C peptide
according to medscape
The reference range of C-peptide is 0.8-3.1 ng/mL (conventional units), or 0.26-1.03 nmol/L (SI)

To qualify for a pump on medicare in the US ,one of the criteria is insulinopenia (ie someone who has insulin deficiency)
To demonstrate this the person has to have
'a fasting C-peptide level that is less than or equal to 110% of the lower limit of normal of the laboratory's measurement method'
(it's 200% if you have relatively severe renal deficiency because apparently renal insufficiency raises C-pep)
The c-pep test has to be at the same time as a fasting glucose test of under 225mg/dl

 

[shaddix]

Hello,

I signed up here today because I saw this specific thread.

My summary: Since January, I have noticed high blood sugars

33 years old. BMI 21. No diabetes in my family, not even distant relatives (but both of my parents have thyroid diseases). "Normal" fasting glucose and hba1c, yet HIGH postprandials > 200 occasionally, depending on what I eat.

Ran from doc to doc but no one takes me seriously because hba1c is "fine", despite my high postprandials. Today for instance I ate a mixed meal (rice, fish, broccoli, sweet desert) in order to prove the point to my doctor (normally I eat low carb and manage to keep my blood sugar within ranges below 120, with an occasional 140 here and there )........ and I hit 239 at 1 hour and was still at 215 at 2 hours, 82 at 3 hours. THIS doctor finally said ok, we'll do an oGTT but don't worry, it's not diabetes (because he looked at the hba1c - see below). Huh? I thought any reading above 200 measured more than once IS Diabetes.

Since no doc took me seriously, I checked for LADA since I read that that is most likely with my stats ("young age", normal weight, and no diabetes in the family).

Ordered a whole range of blood panels out of my own pocket (fasting for 12 hours) and here are the results (lab reference in brackets):

Glucose: 92 mg/dl (< 100)

Hba1c: 5.2 % (< 6.2 %)

Hemoglobine 13.9 g/dl (12.0 - 16.0)

Hematocrit: 41.1 % (36 - 47)

(so no "false low" hba1c due to anemia or something)

ICA: negative (< 3.125 JDF-Units)

GAD-65: < 0.3 U/ml (<1.0)

IA-2: < 0.8 U/ml (<1.0)

IAA: <0.4 U/ml (<0.4)

(so far, so good. Now for the bad stuff):

C-Peptide basal: 1.3 ng/l (1.4 - 5.4) !!!!

Insulin basal: 1.9 mU/l (5.0 - 30.0) !!!

HOMA-IR: 0.4 (< 2.5)

I have tons of other values too but I don't think they would be too interesting or matter much here. Lipids are all perfect. Kidney and liver too.

So, if I interpret above numbers correctly: no Insulin resistance (no Type 2?). No antibodies (no Type 1?). But low C-Peptide and Insulin - what is wrong with me? Am I such an early LADA case that my antibodies are not detectable YET? I read that 20% of T1s don't ever show antibodies anyway, so that could be it, right?

Why is no doctor taking me seriously and telling me I don't have diabetes? Most of all, is anyone here who had low C-peptide and Insulin, yet NONE of the 4 antibodies, and still turned out to be LADA? It's frustrating trying to catch something early on (because I want to act preventive now rather than waiting for complete detoriation)....and doctors don't take you seriously just because it hasn't been in their medical books yet.

Anyone here who started out as early as me?

 

[cz_dave]

It looks a bit like me EXCEPT that my GAD antibodies are 60 times above the norm.

When I went for my first checkup with an endocrinologist, he told me there are many types of diabetes.

It could be that your condition is sustainable in the long term, just with a diet. In any case, you should find a good endocrinologist, if just for the peace of mind. And I would think you are probably not LADA if your antibodies are not elevated.

 

[Daibell]

Hi. Note that NICE has recently reported that as time passes following diagnosis, GAD tests become less reliable and c-peptide more reliable. Also Late onset T1 can be caused by other pancreatic problems rather than GAD. My c-peptide was very low but GAD negative (8 years after diagnosis). In my case I suspect a virus as I had a high unexplained white blood cell count at the time of diagnosis and a mild, dull abdominal ache.

 

[smidge]

Hi @shaddix and welcome!

I was diagnosed 6 years ago. Early 40s, slim all my life, white European and absolutely no family history of diabetes. Originally misdiagnosed as Type 2 as a result of very high random blood tests. However, my fasting were always in the 4s and my HbA1c was also normal. I was given an OGTT and the initial fasting reading was good, but the two-hour test was very high. So, diagnosed with diabetes, but the doctors were baffled.

I had to eat no more than 10g carb at any meal or my BG went through the roof. However, my BG was always back to non diabetic levels by the next meal. Cutting a long story short, my fasting levels deteriorated over the course of about 10 months, I lost a lot of weight which I could ill afford, and I became very ill. When they finally did a GAD test, I was positive for three different antibodies which were all markers for Type 1. Eventually I was diagnosed with LADA and put on insulin. However, the consultant told me that the problem with GAD tests is that antibodies are not always present - if you had 3 GAD tests, two could come back negative and the other positive so it's not conclusive - a positive test is indicative of an autoimmune form of diabetes, but a negative one doesn't rule it out. I never had a c-peptide test as the consultant just said it was obvious I was still producing some insulin, but not enough, so I needed to start insulin.

It is very common in early stages of LADA for the 1st phase insulin to fail causing high post prandial BG, but for the second phase to remain strong enough for a considerable time to bring BG back to good levels within a couple of hours and cause the HbA1c to remain in non diabetic levels. Neither a fasting blood test nor an HbA1c will catch the high BG, but a random blood test or a Glucose Tolerance Test will show up the diabetes.

Smidge

 

[Tracey 68]

Hi I was wondering if this can happen in teenagers too my daughters fasting levels are 5to 8 but 2hours after eatingsandwich today jump to 12.6 she has a glucose tolerance test tomorrow hopefully this will shed some light on things

 

[Leslou]

Hi I was wondering if this can happen in teenagers too my daughters fasting levels are 5to 8 but 2hours after eatingsandwich today jump to 12.6 she has a glucose tolerance test tomorrow hopefully this will shed some light on things

Hi The fasting levels in Australia are recommended 3.5-6 , so 8mmols may prove to be a little high the 12.8 post meals may depend on the type of bread that was eaten how many slices what was in the sandwhich

 

[shaddix]

Thank you for all of your replies, saw them just now!

Hi. Note that NICE has recently reported that as time passes following diagnosis, GAD tests become less reliable and c-peptide more reliable. Also Late onset T1 can be caused by other pancreatic problems rather than GAD. My c-peptide was very low but GAD negative (8 years after diagnosis). In my case I suspect a virus as I had a high unexplained white blood cell count at the time of diagnosis and a mild, dull abdominal ache.

This is interesting...I had a bad virus infection / flu in 2008 which went so wrong that I ended up with a myocarditis - probably the coxsackie virus, which they also report as a suspected cause for T1. So what are you classified as - T1, despite no antibodies?

Neither a fasting blood test nor an HbA1c will catch the high BG, but a random blood test or a Glucose Tolerance Test will show up the diabetes.

I know I've been offered to do the OGTT, but I'm so scared of it that I haven't made an appointment for it yet. My reasons are that I feel so terrible when I eat like 25 g of carbs and peak at say 185 ... my heart pounds, I get the brain fog, dizzy...I'm sure you all know what I'm talking about. So I'm always thinking: if only 25 g of carbs make me feel THAT terrible and nauseous, how am I going to react to 75 g of pure glucose on an empty stomach? I'm afraid of passing out there, or sending myself straight into DKA by overwhelming my pancreas...I know it's irrational, but I can't help the fear so I've been skipping the OGTT ...I was hoping showing my meter readings to the doc would be proof enough as they clearly show my bad spikes, but obviously it wasn't enough. And I'm slowly detoriating: it's taking my pancreas longer now (about an hour longer than only 3 months ago) to mop up all the sugar. So when i.e. in March I went from 185 - 120 - 82 , these days it's 185, 154, 110 or something

Also, exercising doesn't bring my glucose down, but rather up. I really don't know what to do anymore, low carb doesn't seem to cut it anymore. I wish doctors would take me seriously and simply put me on Insulin without the OGTT.

 

[LucySW]

Oh dear. That is awful, really awful. Really, they won't give you insulin without an OGTT?

 

[shaddix]

Yes. My meter readings don't count for an official diagnosis.

 

[cz_dave]

When I went for OGTT, they would first check everyone's BS and did the OGTT only if the person's BS was below a certain safe level. In fact I was sent home the first time. I don't remember the exact limit but it could have been 7.9.

 

[LucySW]

Yes. My meter readings don't count for an official diagnosis.

Dr Bernstein says you can buy insulin in the US - is that where you are? - without a prescription. Some people take things into their own hands if they really get nowhere with their doctors. I've seen references recently to Walmart selling NPH ( which is a good starting basal at low doses, e.g. less than 5u - it's what I use) inexpensively. Then you would just need a rapid-acting (more important) like Novorapid. Do some net research?

The other option would be to ask to borrow a CGM for two weeks. That would document what is going on.