A little help explaining my diagnosis letter, please!

[ident]

Hey everyone! I finally got my letter diagnosing me after nearly a year and I'm a little confused. I'm ketone-prone diabetic but this letter is saying that's type one? I could be reading it wrong.

Would someone kindly help explain this to me? I will have a follow-up soon but for now, I'm curious.


I have never heard of idiopathic type 1 diabetes... I thought I would ask you nice people before I googled.

Also, it says my liver function(gamma GT) is abnormal at 158. Still, considering for years it's been above 2000 and even up to just under 5000 I think I will be thrilled with that level considering now 7 months abstinent!

 

[Robin]

I think, reading between the lines, that what it means is; we have no idea what caused your diabetes, but we acknowledge that you have it, and that you respond to treatment a bit like someone with Type 1, therefore we will treat it like Type 1, because that way you will be able to take advantage of the modern technology that is only offered to people with Type 1.
Idiopathic just means, of unknown cause.

 

[ident]

I see, well thank you Robin that does make more sense to me.

 

[Drummer]

I suspect that what they are telling you amounts to 'that draught you were feeling was due to the flapping of the wings of angels, you should consider yourself fortunate to have pulled off something this amazing.'
To be seven months abstinent is pretty impressive.

 

[ident]

Thank you Drummer, something switched in my brain that it was time to start taking life seriously.

 

[Wendal]

Hey everyone! I finally got my letter diagnosing me after nearly a year and I'm a little confused. I'm ketone-prone diabetic but this letter is saying that's type one? I could be reading it wrong.

Would someone kindly help explain this to me? I will have a follow-up soon but for now, I'm curious.

View attachment 29869
I have never heard of idiopathic type 1 diabetes... I thought I would ask you nice people before I googled.

Also, it says my liver function(gamma GT) is abnormal at 158. Still, considering for years it's been above 2000 and even up to just under 5000 I think I will be thrilled with that level considering now 7 months abstinent!

Hi Ident idiopathic simply means no specific or known cause so they basically don’t know the exact cause.
The letter seems relatively clear in that your pancreas is producing some insulin but you are still at risk of DKA and you seem to have raised BG levels so hyperglycaemia when you don’t take your insulin.
So you do appear to require exogenous or additional insulin in order to keep your BG under control as the Metaformin is not sufficient on its own.
Your liver function tests do seem to indicate some elevated levels but they are not specified in the letter.
ATB

 

[DaveB]

The letter has spent a lot of words really saying we haven't a clue how to categorise it. I'm not surprised. There is a lot of ignorance and confusion within the medical community on how to diagnose and define diabetes where insulin output is low. Some of this is due to inadequate research and pre-conceived ideas. If you have antibodies then T1 is the conclusive definition and that's OK. If you don't have antibodies, and many don't, but have low'ish insulin confirmed by a C-Peptide then the diagnosis becomes unclear (I'm one of those). Some will be defined a T1, some LADA and some like me rigidly labelled as T2 by my current 'expert' endo even though I'm slim etc. My C-Peptide was just above the T1 limit a few years back and I think it's probably now within the 'T1' limits and plan to have it re-tested. The C-Peptide test is not a very reliable one so the labs are reluctant to define in-range levels. Interestingly I've seen posts over the years by some T1s who obviously have some remaining insulin output based on their ability to consume reasonable levels of carbs without large BS swings and good insulin control. Their diagnosis may well have been based on positive antibodies rather than low C-Peptide? So, don't look for a clear diagnosis. The main thing is to have insulin and use it intelligently. BTW my previous bright endo treats me as T1 and says I'm a 'one-off'. I suspect there are many 'one-offs' and you appear to be one as well!

 

[rebrascora]

I wondered if you might actually be Type 3c if you have a history of alcohol abuse. That would explain the lack of antibodies but limited insulin production. Type 3c diabetes is caused by damage to the pancreas, from alcohol, disease, trauma or surgery etc. Many GPs are not familiar with the Type 3c category but it is becoming more widely recognised.

Many congrats on your long period of abstinence by the way and good luck continuing it. I was a sugar addict and comfort eater pre-diagnosis but that mostly stopped although with insulin I still need to have the occasional occasional jelly baby, but I am very disciplined about it. I recently had to give up alcohol as well, as it was making me ill. I was using it as a bit of a crutch from time to time when things got tough but not excessively like the sugar/chocolate I had consumed. Just saying I know it isn't easy, so well done!

 

[Lucyr]

Basically you sound like their conclusion is like mine. You don’t have antibodies (if you did you’d be a simple type 1), you have some insulin production (if you didn’t you’d be more easily categorised as type 1), the DKA doesn’t really help categorise things because there are different types of t1 and t2 that can be ketone prone.

Summary: we don’t really know but let’s call it the bit we do know “ketone prone” and treat it like type 1

 

[ident]

Thank you, thank you, thank you all for your replies. You have all made things clearer.

My C-peptide was taken when I was first admitted to the hospital and I was drinking heavily so all my results were whacked!

BG was over 23+ (later went to 32+)
ketones read HIGH on the metre so over 8+


It's funny you mention Type 3c as this was mentioned in the letter also. I will just post the rest of it. I probably should have to start off with.





And thank you all once again for the compliments on not drinking. It was a very dark time and was not easy but man I feel so good now with the benifit of 39lbs down in weight. Oh and even better I have just this moment been told to stop insulin!!!

 

[Lucyr]

Your high cpeptide would look more like t2 or T3C so the repeat cpeptide in a few years makes sense.

If they’re calling you t1/t3c for now though, honestly I’d not push for that repeat cpeptide and would only do it if they initiated it. They’re not going to take you off insulin with a history of DKA, and t2 isn’t entitled to anything useful, so I wouldn’t see much benefit to me in the test.

 

[Lucyr]

Oh and even better I have just this moment been told to stop insulin!!!

Oh I didn’t spot this bit! Who has told you to stop insulin? Given your high DKA risk I’d be concerned at that.

 

[ident]

Oh I didn’t spot this bit! Who has told you to stop insulin? Given your high DKA risk I’d be concerned at that.

hello, sorry for the late reply! you know how life gets. It was the same doctor who wrote the letter. When I first was told diabetic last year I started on 16 units but then got taken up to 20 units night and day because my drinking but soon as I stopped the alcohol I come down too 3 units morning 2 in evening. so I was not really on much anyway.

I have been off insulin since my last message and The sensor sits at 5*, even after my cheat Friday night meal of a burger king it doesn't even more.

But yes I am very concerned with DKA and I'm concerned I am not getting the proper attention. Bit stuck with what to do

 

[trophywench]

SO - DID YOU GET THAT FAECAL ELASTASE TEST?(oops sorry for accidentally shouting!)

 

[ident]

Your high cpeptide would look more like t2 or T3C so the repeat cpeptide in a few years makes sense.

If they’re calling you t1/t3c for now though, honestly I’d not push for that repeat cpeptide and would only do it if they initiated it. They’re not going to take you off insulin with a history of DKA, and t2 isn’t entitled to anything useful, so I wouldn’t see much benefit to me in the test.

Bit of an old bump but a couple of weeks ago I was admitted with ketones. They redid my c-peptide.




pretty much all my markers are normal now but i still have my sensor. Am i in remission?

 

[rebrascora]

Am i in remission?

Not if you were hospitalized 2 weeks ago with ketones. Were your BG levels also high at that time?
Do you know what caused that episode? Did you lapse with the alcohol or were you ill with a virus or something? Understanding what may have triggered that event will be important. However, my gut feeling is that you are not Type 2 and therefore remission may not be possible for you. There is likely damage to your pancreas which flares up from time to time and may well progress until you need insulin again and eventually permanently. It would be wise to monitor your BG levels and ketones regularly so that you can take action (insulin) before you need to be hospitalized, in the same way as those of us who are Type 1 need to be aware and monitor these things and adjust our insulin to keep ourselves safe.

 

[ident]

Hello there. No my BG was actually very low, I kept going hypo with around 2. I was not feeling well for a couple of days and didn't eat. There was lots of debate if the ketones where naturally brought on from starvation or the dangerous way. I haven't relapsed thank god although I'm finding it harder and harder from anxiety. My daily pattern was disrupted since the hospital and after being left in the waiting room with ketones over 6 and feeling awful I had to threaten to call 999 from inside the hospital unless someone helped me. I was admitted right away then. I do believe you are correct and I have damaged my pancreas from years of alcohol abuse.

 

[rebrascora]

The important thing to remember is that we can't change the past, but we can change the future. I regret my sugar addiction/abuse/comfort eating but I use those feelings to help keep me on the straight and narrow now.
It is interesting that your BG levels were low rather than high especially now you are off insulin and I think that may also indicate some damage to the pancreas/liver BG regulatory system as those two organs should work together to balance your BG and of course alcohol can damage both. Do you have any follow up appointments for your diabetes? Did they give you advice as to what to do if this situation arises again. How did the hospital staff treat it to get the ketones down?
I think generally Type 1s are encouraged to drink some carbs like juice or full sugar coke if they are too unwell to eat and inject insulin for those carbs to ensure ketones don't develop or reduce them if they have. I personally have never developed ketones so it is not something I know much about. Obviously if your levels are low then injecting insulin at that time is not a good idea, so I would be wanting an appointment with a consultant to discus how best to manage a similar situation, should it happen again and maybe having insulin on hand for emergency use if regular injections are not necessary and a protocol agreed for different scenarios like high BG and low BG with high ketones.

 

[ident]

I'm terribly sorry I didn't reply earlier. I thought I had. They believe I had some sort of infection, and missing a few meals sent me into natural ketosis.

I've finally managed to get a face-to-face appointment next month, as I would like some answers. My recent HbA1c result is 2.46% (29 mmol/mol). I'm still 9 months into my recovery and have lost 71 lbs.

 

[Anxious 63]

sorry to hear about your illness i had a bit of a similar illness and i am now type 3 c , could i ask how much you were drinking alcohol if its not too personal . are you diagnosed with a mental illness , all theses issues combine a make things very complex and a lot of people are misdiagnosed