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Hospital changing my diagnosis

johnpol

johnpol

Well-Known Member
Messages
919
Location
Consett
Type of diabetes
Type 1
Treatment type
Pump
It seems that I am having my diagnosis changed from a Type 1.5 (still confuses me 22yrs later) to Type 2, they run a peptide test and my own insulin levels are at near normal, (they want to run another one in four months) initial diagnosis was type 1 after I had an infection in my pancreas that affected my insulin production, or so they said at the time. I was presenting All the signs and symptoms of diabetes (was 24 or 25 at the time), lost weight, blurred vision, lethargic, lots of thirst, frequent urination, I also had a number of infections at the time.
so my question is how can I go from type 1 to type 1.5 and now be told you are now a type 2, on a lot of insulin on a pump, plus other medications, its been a roller coaster over the years, from being perfect (their words) to being not bothered at all (not taking insulin, missing meals, actually running high Bloods to lose weight!!!), talk about being confused I have been working really hard on my diabetes getting my HB1AC from over 100% down to 50%, just to be told oh it doesn't matter about your diagnosis now we will carry on regardless!!!
Hopefully someone more intelligent that me can understand what they mean as when I ask them to explain I just get told it doesn't matter you are diabetic, so it doesn't matter
 
well its taken them 22yrs to get it right then.
Thanks.
might explain why they are being vague when I press them for answers
 
Could I suggest the following scenario, @johnpol :
In your mid 20's you had an infection of the pancreas, this severely reduced, possibly to almost zero, the amount of insulin you were producing, as in Type 1. You were, naturally and necessarily put on insulin. Over the years you have taken a lot of insulin and probably a lot of carbs to help balance it out. As a result you have developed Type 2, ie you have become insulin resistant due to excess insulin, the body protecting itself. This can happen to T1 diabetics, it's called double diabetes. However, in your case, your pancreas infection has long gone, so you are no longer appearing as if you were T1. If you are "just" T2, by cutting right down on carbs, as well as insulin, you may be able to regain normality.
Sally
 
Never thought of that scenario @sally and james but over the years I have been on zero carbs, low carbs and even high carbs, all at the insistence of the DSN and Consultants, I have even tried to reduce my insulin while exercising, just to have huge hypos after exercising. at the moment I am on 40-70gms of carbs daily depending on my training days( I have took up powerlifting again, after having a stroke) so I am reducing my carbs down and exercising, but the consultant says well done but you are still diabetic.
Its confusing me quite a lot and the more I think about it the more confused I get!!!!!!
 
From what you say, you were a genuine T1 (=T1.5) when you had the infection and fortunately your pancreas has recovered it's insulin production so no longer T1 but if you have remaining BS level problems then you are essentially T2 if at all.
 
Daibell said:
From what you say, you were a genuine T1 (=T1.5) when you had the infection and fortunately your pancreas has recovered it's insulin production so no longer T1 but if you have remaining BS level problems then you are essentially T2 if at all.
Click to expand...
the consultant was quite shocked at the peptide results, showing near normal range, but he can't explain the fact that I still need a lot of insulin to keep my BS in check. if I don't Bolus after a meal I pretty much go off the scale with high sugars, same goes for infections, colds and the like, I have been known to go as high as 38-40mmol on three machines and had it before register as just HI on the machine!! Ketones have been produced when I have these episodes of uncontrollable BS's (2) on my machine, so I'm just as confused as I have always been I guess. Thought I knew what diabetes was and did to you but this has knocked my confidence in controlling what is happening with it
 
@johnpol You say you are, "on 40-70gms of carbs daily" and that, "after a meal ..... I have been known to go as high as 38-40mmol". What are you eating before your blood sugars go to these really high levels? Are you absolutely sure that you understand where the carbs/sugars are in your diet? There are so many hidden ones and loads of sugar in somethings we have all been told are super healthy (porridge, bananas, fresh orange juice for example). Tell us about your typical diet so that we can, at least, rule that out, if it isn't the culprit.
Sally
 
Daibell said:
From what you say, you were a genuine T1 (=T1.5) when you had the infection and fortunately your pancreas has recovered it's insulin production so no longer T1 but if you have remaining BS level problems then you are essentially T2 if at all.
Click to expand...

A pancreas infection doesn't cause type 1. Type 1 diabetes is caused by an autoimmune attack. Nor is type 1 temporary, like it appears OPs pancreas infection was.

@johnpol if you are over 20 years post diagnosis with diabetes and your c-peptide results are normal, you are not, and you never were type 1. Cpeptide is a protein waste product produced when the pancreas makes insulin. A long diagnosed type 1 doesn't make insulin, so their cpeptide results will be nil, honeymooning type 1s may be producing a little insulin, but their cpeptide results will still be far below normal. A honeymoon period does not last 20 years.

So you were misdiagnosed as type 1. Your diagnosis has now been corrected to type 2.

You can't have a hba1c of over 100%. Hba1c is measured in two different ways, a DCCT measure, which is given in percentages, and IFCC measure which is given in mmol/mol. A hba1c of 50mmol/mol is equivalent to 6.7%.
 
catapillar said:
A pancreas infection doesn't cause type 1. Type 1 diabetes is caused by an autoimmune attack. Nor is type 1 temporary, like it appears OPs pancreas infection was.

@johnpol if you are over 20 years post diagnosis with diabetes and your c-peptide results are normal, you are not, and you never were type 1. Cpeptide is a protein waste product produced when the pancreas makes insulin. A long diagnosed type 1 doesn't make insulin, so their cpeptide results will be nil, honeymooning type 1s may be producing a little insulin, but their cpeptide results will still be far below normal. A honeymoon period does not last 20 years.

So you were misdiagnosed as type 1. Your diagnosis has now been corrected to type 2.

You can't have a hba1c of over 100%. Hba1c is measured in two different ways, a DCCT measure, which is given in percentages, and IFCC measure which is given in mmol/mol. A hba1c of 50mmol/mol is equivalent to 6.7%.
Click to expand...
Hi Catapillar. We will continue to take different positions on this. Yes, by strict definition T1 is caused by an auto-immune reaction (same for LADA which is T1 that occurs later in life), but the destruction of islet cells, thru whatever cause, produces the same symptoms and needs the same treatment. There is no clinical definition of diabetic islet cell death for non-immune causes which is pretty silly. As the end result and treatment are the same I suggest the T1 definition needs to cover any diabetic condition where there is very low insulin output thru inactive islet cells. BTW I understand but have no evidence that many T1s do have some remaining insulin output so as usual in medicine there is a complete spectrum of any condition. For interest how would you define a diabetic who has very low insulin output thru viral attack on the pancreas? It can't be T2 so what would it be?
 
Daibell said:
For interest how would you define a diabetic who has very low insulin output thru viral attack on the pancreas? It can't be T2 so what would it be?
Click to expand...

Well it would be type 2. That's the problem with type 2, it's a very broad compendium definition of all diabetes that isn't autoimmune (type 1), genetic (MODY) or caused by physical damage to the pancreas (3c).

That's not how I define type 2 or type 1, that's how medicine defines them.
 
@sally and james , my typical diet looks similar to this but can change, my DSN changed my breakfast around so I have 1/2 pint skimmed milk for breakfast (BS 5.1mmol this morning) I will have two pieces of fruit (apple or Orange or melon) Lunch at the moment is rye bread @ 9grms of carbs per slice (2 slices) then 2 poached eggs (done in Microwave), tea will be Bacon and eggs or chicken, Fish or steak, veggies will consist of cauliflower, carrots, broccoli, Kale I particularly like swede mash. this is no where near enough to sustain me with training but I am trying to work out why sometimes my BS's will spike very quickly and for no reason.

As for my initial diagnoses over 22yrs ago, I was told that I was a type 1, due in part to the infection in my pancreas, which the Consultant who diagnosed me whilst I was in hospital for three days, said had "Killed off the part that produces your insulin" which he said would explain all my symptoms I was displaying at the time. I also understand that it is virtually impossible to go from a Type 1 to a Type 2, because of the biomechanics of it, but over the last ten years the consultants have been telling me, that I was a Type 1.5, not a type 1 because of the age and how I developed the condition. But what is causing my confusion now is why have they suddenly decided that I am now type 2, if I was a type 2 originally then that is not an issue, I have a lot of complications that go with diabetes already, so I am a diabetic regardless, but they should have got my original diagnosis right first time not 22yrs later, I think this is the crux of my issues with them as I am back on the right path and getting my BS's back to where they should be, and hopefully all the other things going on will get sorted out and the Consultants might even stick to me being a Type 2 for the next 22yrs and not "change their minds". I thank every one for their advice and wisdom.
 
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