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Am i diabetic?

J

Jamie1991Stables

Member
Messages
17
Hi, I was admitted to hospital exactly a year ago and was diagnosed as type 1. I was told I had DKA and began taking novo rapid throughout the day and lantus before bed. But i kept having a hypo, even when only injecting 1 unit. I came off of my injections altogether and haven't taken any injections for 10 months now. I'm being told by one specialist that I'm in the honeymoon phase, but then my diabetic nurse gets my hopes up and theorises that I may not be diabetic at all (I should point out I had pneumonia at the time I was diagnosed type 1).
I'm 6 foot 4 and 14 stone so they ruled out type 2. I guess I'm just hoping I'm not diabetic after all and wondered if anyone could offer an opinion.
Any would be appreciated
 


As you were on insulin you will have a meter. What sort of levels do you see before meals and a couple of hours later? What and when was your last HbA1c test?
 
Bluetit1802 said:
As you were on insulin you will have a meter. What sort of levels do you see before meals and a couple of hours later?
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My levels are always around 4/5 before a meal and usually about 6 a couple of hours afterwards, I very rarely get a reading higher than 7 and if I do it's because I've had a very high carb meal.
 
Jamie1991Stables said:
My levels are always around 4/5 before a meal and usually about 6 a couple of hours afterwards, I very rarely get a reading higher than 7 and if I do it's because I've had a very high carb meal.
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Well in that case I would ask your nurse for an HbA1c test, and if that comes back normal, and with those non-diabetic levels you are reporting, I would be very suspicious of your initial diagnosis.
 
I had my hba1c checked on 20th July 2016 and it was 23.0. But it was previously 32.0 and 66.0 when I was initially diagnosed type 1.
 
Can you tell me what units those HbA1c tests were? If they were DCCT % they were very high, even the 23.

When you were diagnosed did they do the specific tests for Type 1? A GAD test and a C-peptide test? These are the ones used to diagnose Type 1.

How have you managed to get your levels down to what sounds like normal numbers?
 
My hba1c were done in mmol. So the 23.0 would have been less than 5% DCCT.
The diabetic specialist didn't do a c-peptide but he did a GAD test. It showed that I didn't have any diabetes in my blood but he said that this is common as it can take over a year for the presence to be in the blood. I was sceptical of his assessment but he's a renowned diabetes specialist who does lectures at Sheffield university, Dr Keith Sands. I feel a moron questioning his diagnosis but i feel great. I've controlled my glucose levels by cutting out all sugary foods. I have a high protein diet and eat complex carbs. Plus I exercise 5 times a week.
 
I am at a loss as to what to think with those HbA1c results and your current daily levels. I'm not a Type 1 and am floundering a bit. I will tag @GrantGam who I notice is on line to see if he can help.
 
I could accept it if the diagnosis was unanimous but different people have different views. I'm being told by my GP that it could've just been a 'blip' caused by the pneumonia. The diabetic nurse theorises that I'm not diabetic, she's seen nothing like it. But the specialist says I definitely am and I'm in the honeymoon phase. I just don't know what to think.
 
Thanks for the tag @Bluetit1802

@Jamie1991Stables, what I find very interesting is that you were diagnosed as a T1D with an A1c of just 66mmol/mol. It's common for many new T1D's to have an A1c more than double what you had at diagnosis!

Your A1c at diagnosis of 66mmol/l equates to an average BG of 10.4mmol/l, that in itself is extremely unlikely to cause DKA. So it's all quite bizarre...

There are a few options here (I'll stress I'm no doctor and have had a few beers tonight)

-You may be T2 and your episode of DKA was the result of an external factor.

Not all T2's are "overweight", so it's important to recognise that people in good shape can also have type 2 diabetes. Here's a study which looks into T2's that have developed DKA. It's rare, but apparently possible if there's another underlying issue.

http://clinical.diabetesjournals.org/content/22/4/198

-You may be T1.5 (LADA) - have a read of the below link and I'll tag @Kristin251 who is a notable forum member with LADA.

http://www.diabetes.co.uk/type15-diabetes.html

-You may have a long honeymoon period.

Honeymoon periods can last for a very long time, sometimes well over a year. But I don't think you fit this possibility as a T1 must use insulin, even if they're making their own, they normally even need a little bit of basal.

-You may have a form of diabetes called MODY.

This is a fairly rare type of diabetes and seems to be reserved for those under 25 (I don't know why). How old are you?

https://www.diabetes.org.uk/Diabetes-the-basics/Other-types-of-diabetes/MODY/

That's about all I have to contribute, how much of it is relevant or accurate I don't know. Please keep us posted on this as I am genuinely very interested

Grant
 
Hi Grant, thank you for your response.
I did some research about LADA and the specialist ruled it out. He seemed very set on me being a T1.
I'm 25 years of age, I was 24 when I was diagnosed and at the time of diagnosis I also had pneumonia which I was hoping was the reason for my DKA.
 
mahola said:
Hmm, quite right. Mine was 132. My daughter's was 121. That is horrendous seeing it written down
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Hearing that people had A1C's into the hundreds on diagnosis just adds to my doubt. The diabetic specialist seemed so intent that I'm T1 and dismissed the suggestion of T2, T1.5 or that I'm even diabetic at all. It seems he's put all of his eggs into one basket and said "it's the honeymoon phase, you're definitely t1".

Can't I demand further testing to find out for sure if I am definitely diabetic? I'm meant to be a type 1 but haven't used any form of insulin in almost a year!
 
Are you aware on what grounds the diabetic specialist ruled out LADA as a diagnosis?

The DKA is really strange...

I'd be very interested to find out if your HbA1c level increased if you were to revert back to a "normal" diet. By normal I mean higher carb and one which is not tailored towards the needs of a diabetic. An increased HbA1c on a diet of 250g+ carbs per day would be a good indication as to whether you were indeed diabetic, whatever the type. I'm still finding T1D to be unlikely, just because of what you've said.
 
Jamie1991Stables said:
Can't I demand further testing to find out for sure if I am definitely diabetic? I'm meant to be a type 1 but haven't used any form of insulin in almost a year!
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C-peptide and GAD antibody tests seem to go hand in hand for accurate diagnosis of T1D. But, because you initially presented with DKA, the doctors will be "certain" that you have T1D because they also go hand in hand as a positive marker of T1D.

There's also genetic testing of sorts for MODY. I don't know (off the top of my head) of any MODY diabetics on the forum to tag here...
 
Jamie1991Stables said:
Haha I hope the diagnosis is wrong too.
It's funny... me being diagnosed as a T1 led to me trying to become as fit as a butchers dog! I haven't had any sweets or fizzy pop in 12 mths, that in itself seems like a triumph!
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How much carbs (weight) are you eating per day?
 

Is it possible to get DKA and not be diabetic? Isn't it possible that the pneumonia I had damaged my pancreas and it has now repaired itself?
 
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