results back - Positive for antibodies, low c peptide but still making insulin. advice?

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Mbabazi

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Type 1.5 LADA
Hello community,

I hope everyone is starting the week off well. I just had my appointment with a diabetic doctor from my GP and she gave me the results of my antibody test and c peptide. She told me the antibody was positive and that the c peptide not as "high as expected" but that I was still making some insulin and that she thinks I am in the honeymoon phase. She however said she cannot make a definitive diagnosis and treatment plan but that she has made a referral to the diabetic experts or some such group or person( I forget the exact term she used) and that they will respond as soon as possible after which she will be in touch. She did not want to get into the numbers and for some reason I cannot see the results on my app. She told me to call to call reception for that but I just did and they said they are not allowed to print them out for me or read them out to me. Honestly that is annoying because I wanna know exactly what they are.

Anyway, now that it looks like I may really be a type 1 or LADA, I am wondering what advice you might have for me in terms of expectations for treatment. Thus far I have been trying to fast, reduce carbs, eliminate sugar and walk for exercise. I dont have much weight to lose and have a bmi of 21 or so. I also feel that the calls with the doctor are always rushed and they always end with me wishing I had asked so many other questions.

Before she hears back from the other specialist, my doctor said she will renew my metformin prescription but honestly there has been no change in my numbers since I started it. Also, at what point do I advocate for free testing kits and such?

Thank you all for being ever so helpful in navigating this journey.
 
Hi,
I’m fairly new to T1D as well, 5 months ago at 46yrs old.
More experienced will come in soon I’m sure but from my point of view you’re doing the right things to limit carbs and stay active.
Exercise I found reduced the amount of insulin I need for long acting (background - basal) and quick acting (for food -bolus).
I’d move to insulin as fast as possible if your blood glucose levels warrant it, I.e. after eating it rapidly increases and stays there for a long time.
Can you share you blood glucose levels and perhaps you have a HbA1c result already - if not you should ask for that test. They ought to give you your other results as, I can’t understand why they keep it from you! Can you visit them and ask for them in person?
As type 1 you can request a libre2 CGM monitor that sticks to you arm and via a smart
Phone app you can monitor you blood glucose levels in real time. It’s very useful ! Otherwise it should come with a reader that scans the sensor.
Good luck
 
Last edited:
Ok from a previous post you made you stated levels mid teens 2 hours post eating, probably insulin is a good idea if you’re diabetic nurse (DSN) agrees. If you’re recording such data blood glucose before eating, 2 hours post eating and how many carbs consumed your DSN can make a better judgement on your insulin requirements.
 
Good to hear from you again @Mbabazi Its annoying you couldn’t get your numbers. I question the truth of what you were told - sometimes receptionists are just unhelpful. You could try again and ask to speak to the practice manager if you don’t have any success.

If you’re Type 1, which it definitely sounds like you are, you need insulin. It’s very common to still be making some insulin yourself after diagnosis. That doesn’t mean you don’t need external insulin.

You should push for the C Peptide number in particular as that will be helpful.

Many adult Type 1s start on tiny doses of insulin, which gradually increase. I know I’ve ‘spoken’ to you lots before but I can’t remember if I told you that without insulin injections my body managed to get my blood sugar down to 3.8. However, this was a strain on my remaining beta cells and so I still took insulin. Early introduction of insulin can help preserve your remaining beta cells for longer. Because I got the insulin I needed in good time, my honeymoon period lasted around 7 years.

Please keep us updated and don’t be afraid to be politely pushy if you feel you’re getting nowhere.
 
In addition to the great comments above, I would add that a healthy diet for someone with Type 1 diabetes is the same as a healthy diet for someone without diabetes. There should be no reason for eating low carb unless you intend to maintain it for the future. If you eat low carb now, it will affect your insulin requirements - low carb can make you insulin resistant (you may need more insulin) and is hiding your need for insulin today.
 
tHANK
Inka said:
Good to hear from you again @Mbabazi Its annoying you couldn’t get your numbers. I question the truth of what you were told - sometimes receptionists are just unhelpful. You could try again and ask to speak to the practice manager if you don’t have any success.

If you’re Type 1, which it definitely sounds like you are, you need insulin. It’s very common to still be making some insulin yourself after diagnosis. That doesn’t mean you don’t need external insulin.

You should push for the C Peptide number in particular as that will be helpful.

Many adult Type 1s start on tiny doses of insulin, which gradually increase. I know I’ve ‘spoken’ to you lots before but I can’t remember if I told you that without insulin injections my body managed to get my blood sugar down to 3.8. However, this was a strain on my remaining beta cells and so I still took insulin. Early introduction of insulin can help preserve your remaining beta cells for longer. Because I got the insulin I needed in good time, my honeymoon period lasted around 7 years.

Please keep us updated and don’t be afraid to be politely pushy if you feel you’re getting nowhere.
Click to expand...
Hey Inka,

Thanks for your constant support. So I insisted and asked for the c peptide number and was told 459 pmol/L. I am trying to find a converter on google because many guidelines on diagnosis use ng/ml. When I enter it though it gives me 204.2 ng/ml which does not make sense because I keep seeing that C peptide for a diabetic is low when it is under 0.2. The doctor said that for sure I was still making insulin. I just want to know how much. Would you know from seeing this number.

I am more accepting of insulin is that is the solution because I am aware of all the other harm the high glucose is doing to my body. I really hope the doctor comes back to me soon. In the meantime I have picked up the metformin prescription and hope it can help in whatever way it can for now.
 
helli said:
In addition to the great comments above, I would add that a healthy diet for someone with Type 1 diabetes is the same as a healthy diet for someone without diabetes. There should be no reason for eating low carb unless you intend to maintain it for the future. If you eat low carb now, it will affect your insulin requirements - low carb can make you insulin resistant (you may need more insulin) and is hiding your need for insulin today.
Click to expand...
this is helpful to know, thank you. I did not know that type 1s eat as usual. Interesting.
 
mitchsi said:
Hi,
I’m fairly new to T1D as well, 5 months ago at 46yrs old.
More experienced will come in soon I’m sure but from my point of view you’re doing the right things to limit carbs and stay active.
Exercise I found reduced the amount of insulin I need for long acting (background - basal) and quick acting (for food -bolus).
I’d move to insulin as fast as possible if your blood glucose levels warrant it, I.e. after eating it rapidly increases and stays there for a long time.
Can you share you blood glucose levels and perhaps you have a HbA1c result already - if not you should ask for that test. They ought to give you your other results as, I can’t understand why they keep it from you! Can you visit them and ask for them in person?
As type 1 you can request a libre2 CGM monitor that sticks to you arm and via a smart
Phone app you can monitor you blood glucose levels in real time. It’s very useful ! Otherwise it should come with a reader that scans the sensor.
Good luck
Click to expand...
thanks for sharing your own experience with T1D as an adult. I do exercise by walking mostly so I will keep that up. I still have to wait for this doctor to consult the other specialist and then let me know if they will start me on insulin. At that point I will remember to ask for a CGM because I really want to know what happens with my glucose through the day and night. My HBA1C was 7 which is good but I think that was that way because I was startving alot in a bid to reverse my diabetes so I was having many low numbers mixed with super highs. Thus far they have been treating me as a type 2.
 
Mbabazi said:
this is helpful to know, thank you. I did not know that type 1s eat as usual. Interesting.
Click to expand...

Yep, we can eat a normal healthy diet with some treats as well eg cake, desserts, chocolate, etc. Type 1 is really nothing to do with diet. It’s an auto-immune condition. It doesn’t happen because of bad diet and a good diet won’t cure it. Type 1 used to be a terminal illness before the discovery and purification of insulin. Now we have insulin, we need to learn how to be our own pancreas and use that crucial insulin in the most appropriate way. That’s the key to dealing with Type 1.

I’ll see if I can find some info for you on your C Peptide. I know there’s a chart somewhere online.
 
Here we are @Mbabazi This is the chart I was thinking of:

C-Peptide Exeter Clinical Laboratory International

www.exeterlaboratory.com www.exeterlaboratory.com

To put it simply, it looks like your C Peptide is low (below normal) but not extremely low. That would fit with Type 1/LADA as the decline in insulin production is slower.

The fact you’re having to almost starve yourself and are still getting higher blood glucose results makes me think you need insulin sooner rather than later. Please make clear to anyone medical that you talk to that you’re eating hardly any carbs at all. If you don’t, you’ll delay things and your poor remaining beta cells will incur further damage. Insulin will help your remaining beta cells last longer.
 
Inka said:
Here we are @Mbabazi This is the chart I was thinking of:

C-Peptide Exeter Clinical Laboratory International

www.exeterlaboratory.com www.exeterlaboratory.com

To put it simply, it looks like your C Peptide is low (below normal) but not extremely low. That would fit with Type 1/LADA as the decline in insulin production is slower.

The fact you’re having to almost starve yourself and are still getting higher blood glucose results makes me think you need insulin sooner rather than later. Please make clear to anyone medical that you talk to that you’re eating hardly any carbs at all. If you don’t, you’ll delay things and your poor remaining beta cells will incur further damage. Insulin will help your remaining beta cells last longer.
Click to expand...
I'll make this clear in my next call with the doctors which I hope will be soon.
Thanks for the chart too. It explains it clearly. I just had a thought. When I was first diagnosed late May 2023 (before i moved to the UK) and that was because I had DKA, they run a c peptide and this was the result 0.7 ng/ml. See attached. The doctor then first suspected type 1 because this was borderline. Not high but not low enough either. So now I want to compare the c peptide results from May with these but because the units of measurement are different it's tricky. I can't find a converter from pmol/L to ng/ml but I wonder if this means that my levels now would be 0.4 ng/ml and that would suggest that my insulin production has gone down from 0.7 that it was in May.

I'm just trying to wrap my mind around it all. I supose the c peptide won't matter much because the antibody is positive but knowing everything I can makes me feel more in control.
 
I don’t know @Mbabazi but I wouldn’t worry too much about the exact number (or conversion). Sometimes the tests are done in slightly different ways and that can affect the results too, so you might not be comparing like with like. I’d compare both your results with the range shown on each result sheet.

The test result you posted above shows your C Peptide is below the normal range. That’s the important thing. Your current result is low too. Your consultant should be able to tell you if it’s decreased. To me, the important point is you’re unable to eat a normal diet without getting high blood glucose results. That to me suggests you need insulin. You’ve also previously suffered from DKA and are positive for the Type 1 antibodies.

I completely understand why you want to know. I always want to know everything too and it really gets to me if I can’t know everything. Sorry I can’t give you a definite answer but I wouldn’t want to do the conversion incorrectly or miss important information about the way it was done or the lab ranges.
 
Inka said:
I don’t know @Mbabazi but I wouldn’t worry too much about the exact number (or conversion). Sometimes the tests are done in slightly different ways and that can affect the results too, so you might not be comparing like with like. I’d compare both your results with the range shown on each result sheet.

The test result you posted above shows your C Peptide is below the normal range. That’s the important thing. Your current result is low too. Your consultant should be able to tell you if it’s decreased. To me, the important point is you’re unable to eat a normal diet without getting high blood glucose results. That to me suggests you need insulin. You’ve also previously suffered from DKA and are positive for the Type 1 antibodies.

I completely understand why you want to know. I always want to know everything too and it really gets to me if I can’t know everything. Sorry I can’t give you a definite answer but I wouldn’t want to do the conversion incorrectly or miss important information about the way it was done or the lab ranges.
Click to expand...
Thank you Inka. Your responses are so comforting. I will keep you posted
 
Mbabazi said:
Thank you Inka. Your responses are so comforting. I will keep you posted
Click to expand...
Hi Mbabazi,
The responses of someone experienced like Inka as you say are very reassuring and I echo everything she says.
I consider diabetes in terms of deficiency and resistance so effectively Type 1 and 2 respectively and hence that governs what I consider the most relevant treatment.
So you imo are like me in that you are still producing some insulin but effectively are insulin deficient rather than resistant hence although you may be able to in the short term continue with the Metaformin but would probably be better off with insulin.
As Inka says this will help support and prolong the insulin producing life of your Beta cells and hopefully extend your honeymoon period.
I don’t like taking any medicines and if I was Type 2 I would try my utmost to go into remission through diet and exercise and not take medication although I will do that as part of my diabetes management as I don't see insulin as something I can do without and I don't look upon it as a drug just something I can’t produce enough endogenously so need the exogenous supply.
ATB
 
With a history of DKA / ketones, low BMI, age in mid-30s, positive antibodies, and low cPeptide I really cannot for the life of me understand the delay in confirming a T1 variant, and starting insulin without delay

NICE guidelines for diagnosing T1 list basically all of your clinical indications!

Initial diagnosis​

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:
  • ketosis
  • rapid weight loss
  • age of onset under 50 years
  • body mass index (BMI) below 25 kg/m2
  • personal and/or family history of autoimmune disease. [2015, amended 2022]

More detail here:

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk www.nice.org.uk
 
everydayupsanddowns said:
With a history of DKA / ketones, low BMI, age in mid-30s, positive antibodies, and low cPeptide I really cannot for the life of me understand the delay in confirming a T1 variant, and starting insulin without delay

NICE guidelines for diagnosing T1 list basically all of your clinical indications!

Initial diagnosis​

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:
  • ketosis
  • rapid weight loss
  • age of onset under 50 years
  • body mass index (BMI) below 25 kg/m2
  • personal and/or family history of autoimmune disease. [2015, amended 2022]

More detail here:

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk www.nice.org.uk
Click to expand...
Thanks for sharing this. I too don't understand it either. I finally got access to the results and this attached is my antibody GAD result - 31. I wonder if it being low is making them relaxed. Please note that I had to ask for this appointment we had yesterday nd it turns out the results have been available for a while. Now I'm antsy because all the dieting and fasting efforts I have been making were likely not helpful and I'm concerned about all the chronic high numbers and the effects on my body. I've decided to just up the mtformin to two tablets of 1000mg myself if that ca help in the interim as they decide what to do and start me on insulin. If they don't call me back today, I will call them and inquire.

Also I wondered if it is standard practice to run the other antibody tests, Islet cell and insulin antibody. It looks like they only run GAD on me. So maybe they need to run those to prove it?
 
Becareful upping your meds without medical advice, I have an email address to my diabetic nurses and they are very responsive. Do you have an email address for yours to consult with?
My opinion but intermittent fasting and having lower carbs (not no or very low carbs) is a good option until you’re treatment has been finalised, it should be kinder on your body.
i was only informed of GAD results but a couple of
Months on and chatting to the DSN she informed me of the other two auto immune tests and that they were neg. Again you might have to explicitly ask for those results!
 
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