Diagnosis Limbo

[ConfusedDiabetic]

Hi all, coming here in hope of some clarity - but not expecting any medical diagnosis.

Approx. 2 years ago, I suddenly starting using the toilet alot, and was feeling very thirsty. Went for a blood test, HbA1C was at 109mmol/mol, so was diagnosed as T2.

Immediately prescribed metformin (3x 500mg per day) - Hb1AC was 95 after six months, but 150 after twelve months. During this time, lost over 4 stone in weight and was generally unwell. No DKA but very lethargic and tired. Was exercising 5 times a week, went practically full keto, but HbA1C still rocketed to the 150mmol.

The 150HbA1C diagnosis prompted treatment as T1. Was prescribed bolus and basal insulin - 10 units of bolus daily, and 1 unit of basal per 10g carbs ingested. Test for antibodies was negative, but was dismissed as it could have been caught early in the diagnosis. Life was good for 12 months - blood sugars were under control, few and far between hypo's and HbA1c was down to 55 after one year. All good stuff and everything was under very good control.

Approx 1 week ago, my insulin sensitivity suddenly changed. I started to go low during my weekly round of golf (hasn't happened before) and I have since had to reduce my bolus insulin to 5 units, and only have to use 1 unit of basal to correct and offset approx 10g of carbs eaten at mealtimes. The first 30g of carbs seem to be free and don't need correcting - its just anything after 31g of carbs that need rapid insulin. Chatted to my diabetic nursing team and they seemed comfortable that i continue to adjust as required - but must not fully stop the bolus insulin.

I'm at my absolute whit's end with my diagnosis. My brain is thinking it could have actually been a very bad case of T2 that is now under good control and the insulin isnt needed (but the 12 months of insulin make me question THAT logic), it could be a T1 honeymoon period on a delayed fuse - or i could be LADA and my pancreas is now catching up and i can take my foot off the pedal until the need for insulin picks back up.

Again, not looking for or expecting medical advice - but does anybody have a similar story or experience that they can share and hopefully help me better understand what might be going on??

TIA for any comments and clarity that can be shared

 

[Melgar]

Hi and welcome to the forum @ConfusedDiabetic. I will let those with LADA assist you. I do, however, have a question. Your medical team must have done a C-Peptide test, the results of which triggered them to conduct further tests to see if you are producing antibodies relating to autoimmune diabetes. If your C-Peptides are low, when your blood sugars are high, then this is suggestive of T1 DM.

In general, most type 2 diabetics produce an excessive amount of insulin to compensate for their insulin resistance. This means that someone with T2 will have high readings fir their C-Peptides. When they test to see how much insulin you are producing they test C-Peptides as there is a direct correlation between insulin produced and C-Peptides. The reason for this is insulin has a very short shelf life outside the body and can quickly deteriorate , whereas C-Peptides remain stable for longer so the lab can get an accurate reading to assess how much insulin your body is producing.

Edited for clarity.

 

[EllieM]

Hi @ConfusedDiabetic and welcome to the forums.

I've got to agree with @Melgar that a cpeptide test might provide some clarity here. Also be aware that there are other types of diabetes out there eg T3c which is lack of insulin caused by damage to the pancreas.

Just a boring childhood diagnosed T1 here, so can't help with personal experience, but @Chris24Main is a T2 who was initially misdiagnosed as T1 so it can happen, though it is much more common the other way round.

(BTW, I think you may have your terminology mixed up - basal is the slow acting insulin, bolus is the fast acting. It doesn't help that they both start with b, I used to get it confused quite often.)

But people's insulin sensitivity can vary a lot (some people need 100sof units a day where others need less than 10) so I wouldn't say that a reduction in insulin needs proves anything. And the insulin needed by an individual can also vary - eg affected by illness, exercise, stress, the weather. There is a standing joke among T1s that the colour of socks you choose in the morning has an effect.

Good luck with your diabetes journey.

 

[Africanaussie]

It's tough to figure out what's going on, but LADA could be in the mix, especially with how your insulin needs changed. The drop in insulin might be your body catching up, but it's hard to say without more tests. If your C-peptide levels are low, that’s usually more T1-related.

 

[Chris24Main]

It's all very complicated and confusing. Welcome to the club.
I was initially diagnosed as T1 as @EllieM says - and did a year of insulin before a C-peptide confirmed active insulin production. Just to nudge @Melgar 's characterisation - it may well be correct about the timing, but C-Peptide is not insulin, it's the left over part between two strands of proteins that the body discards after joining them together to make insulin - thus it's a pretty solid marker of the fact that your body is making insulin recently.

What it does not tell you, is what state your pancreas is in if the levels are low. This is the really tricky part.

There are various ways that the pancreas can go wrong. A sudden, catastrophic auto-immune attack, can characterise a "classic T1" - but over time, depending on various inputs - you can tend toward T2 presentations too.
On the other hand, "classic T2" is normally characterised by a long term build up of insulin resistance, leading to an ever higher demand for insulin which eventually overwhelms the pancreas' ability to keep up (actually, a tiny, tiny part of the end of the pancreas). But - in that classic T2 scenario, if the blood glucose remains high, that glucose is extremely toxic to the same part of the pancreas, and that can start to damage the body's ability to produce insulin.

Yet another mechanism involves a build up of fatty deposits in the liver and pancreas, leading to the same cells going into a state of hibernation until the person loses those deposits (fatty liver).

And even more complicated, sudden changes in inflammation that may result from infections (like COVID, but really anything that results in acute inflammation) can cause the pancreas to shut down insulin production for a while.

Stress can interplay with all of this, overbalancing the hormone levels in other ways leading to other types of diabetes.

So - there isn't usually a simple answer that you can trust.
More than that, even a C-peptide test only tells you what the pancreas is doing now, not whether it's inevitably on a path of ever reducing function, or whether it may recover.

The only thing I would say, is don't give up on your pancreas until you have definite proof that it isn't functioning. There isn't any study or data to point to one way or the other that would say "this means that this outcome is a definite" -

If you have been subject to a sudden auto immune cascade, there is very little you can do, but that (in my opinion) should not prevent you from trying, provided you feel you can. Some prefer to accept insulin dosing, and it may even be that this is preferable and less stressful. Only you can decide.

Personally, I was a little suspicious that some of the glucose readings I was seeing on my CGM simply could not make sense unless I was producing some insulin, and I put together a program of very low carb and intermittent fasting to rapidly reduce the fat in my liver to see what would happen. That worked amazingly well for me, but that was only appropriate in my very specific set of circumstances. I was also able to safely stop my meds during this time -

Don't know if any of that helps, but feel free to ask whatever...

 

[ArtemisBow]

I have some similarities in my own diagnosis story - initially diagnosed as type 2 and given Gliclazide, then when levels did not decrease was told “you’re probably type 1 then” and switched to insulin. To my knowledge I have never had any antibody tests at all, and was told there was no point as I clearly required insulin - my notes now say type 1 but I wonder if I might be LADA based on what I have read since.

I only wanted to say that being classed as type 1 can be beneficial from the POV that where I live, I qualify for certain support such as Libre on NHS which I would not get if I were type 2. So I prefer to just think about how best to treat my diabetes and not be too concerned with the label. Like with all things diabetes related though, you need to do what is best for you!

 

[Antje77]

my notes now say type 1 but I wonder if I might be LADA based on what I have read since.

LADA is T1, so if you're LADA your notes should say type 1.
In adults it often takes longer for the autoimmune reaction to kill off enough insulin producing cells to cause absolute insulin dependency than in children, but the end result is the same.

 

[ArtemisBow]

Sorry Antje I meant more that I wonder now if I could have managed things differently earlier if I was LADA, perhaps I could have stayed off insulin for a bit longer.

Realise that wasn’t clear, I shouldn’t write posts just before going to bed!