Recently Diagnosed Type 1

[jamesfitz]

My story began in May of this year when i was given steroids to clear up eczema which had taken a turn for the worse.

4 weeks into the steroids use my body appeared to crash where I was struggling with no energy and I was drinking liquids like there was no tomorrow. I finally went to the doctors who carried out a blood sugar test and found i my level was 30. I then ended up in hospital for 5 days where every doctor I had seen said it was type 1 diabetes as I had been admitted to hospital with DKA.

As soon as I got released I had a meeting with the Diabetes consultant who arranged for me to have some samples taken so he could test for antibodies. 4 weeks later I received my results and both the GADA and Islet cell tests were negative. Given my insulin requirement had fell from 40 units to 10 units too he advised me to come off insulin and diagnosed me as having ketone prone type 2 diabetes.

Last Friday I had a follow up meeting with him where he now believes I have Type 1 diabetes because my fasting c peptide result was 166? (cant really make much sense of this result as everyone else online has a result between 0.5 and 4 - can anyone explain this to me?).

He advised me I was on my honeymoon period and its only a matter of time before i require insulin again.

Has anyone else with type 1 gone through the same thing as I have? Given my c peptide result above would most of you agree with the consultant that it is Type 1 diabetes?

 

[ButtterflyLady]

Hi jamesfitz and welcome to the forum. We have several very smart T1 diabetics who will be able to answer your questions. Since it's pretty late at night in the UK at the moment, I thought I'd say hi/welcome and give you a couple of links to read if you want, while waiting for the T1s to reply.

http://www.diabetes.co.uk/which-type-of-diabetes.html

http://www.phlaunt.com/diabetes/spindex.php

The second link is an index page that includes pages on the types of diabetes that aren't T1 or T2. I have no idea what your test results mean but I wanted to give you these links as the first link has a good flowchart about diagnostic tests, and the others have more detailed info about T1, T2, and the other types. Hopefully they provide some helpful info for you. I imagine it's quite unsettling and confusing not being totally sure which type of diabetes you have, so I hope things get clarified for you soon.

 

[Rodders69]

Hi James,
I wonder if they meant you have a reading of 166 IFCC - mmol/mol which would make more sense, it would give you a 24.9 mmol/l which is high and would need investigating by your GP.
Use the converter on this site and it may make more sense to you. http://www.diabetes.co.uk/hba1c-units-converter.html
Good luck

 

[jamesfitz]

My fasting c peptide value was 166 apparently normal values are 140-1000

 

[Daibell]

Hi. As far as I can see, c-peptide tests and results are a complete mess and everyone gives different ranges. My result was 1.19 ug/l with a range of 1.1 to 4.4. I took mine to be quite low hence I'm on insulin. My GAD was negative but according to NICE if these tests are taken many years after diagnosis the GAD will be less reliable but the c-peptide will be more reliable. islet cells can fail for reasons other than GAD antibodies e.g. viruses.

 

[Mrsass]

Hi @jamesfitz sorry to hear what you've been though, hope you get the help you need on here, I'm a little clueless about c peptides I'll be honest.

With a bg of 30 when you went into hospital I would have said you were more likely to be type 1, but I'm no doctor,

most type 1's do go through a honeymoon period after diagnosis where their insulin requirements drop rapidly.

Hope you find the help you are looking for

Abbie

 

[Spiker]

Based on the information provided there is no reason to believe your consultant is wrong. All the diagnoses you have been given were reasonable based on the information that was available at the time of that diagnosis. The most recent one is based on the largest amount of evidence and is most likely correct. The GADA and islet antibody tests are not conclusive as there are false negatives in a significant number of cases. If you were T2, ketosis prone or not, you would expect a C-peptide at the high end of the range and a high insulin resistance leading to a high insulin requirement. Your requirement of 10u/day (after initial stabilisation of DKA) is typical of a honeymooning newly diagnosed T1.