Frustrated and upset

[kitedoc]

Yes, a second opinion sounds best.
Have you thought about what causes your blood sugar spikes? And whether it is the food you are eating?
below are 3 'photos'

Far left: This is a table (apologies for the 'out of focus') showing the amount of insulin in the blod after an injectiont of a short acting insulin (humalog, top line)
and you can see that its peak effect is anywhere between 0.8 to 4.3 hours, average being 2.4 hours.
Perhaps keeping 2.4 hours in mind, then note what happens when the dose of a short-acting insulin is increased in the next slide.
Finally look at what the BSL rise is like for various types of bread in the third slide.
Now, whilst bread may not be the actual full content of say, your lunch, just see how much possible discrepancy there could be between the sugar rise from the bread vs when short-acting insulin might be acting most strongly (at peak).
Do you agree there is likely to be a mismatch? That the blood sugar rise from the bread in this case outpaces the insulin peak? Yes you might have a shirt-acting insulin working much quicke than the average of say 2.4 hours in this example, but that is one end of the range and i think you might expect less of a bsl spike if that was the case?
Yes, adding some meat or cheese might slow absorption of the bread but will that be enough to better match the blood sugar rise to the blood sugar lowering effect of the short-acting insulin?
At least until your results and diagnosis are better clarified, and in interests of keeping your BSLs in better control possibly you may wish to consider at least reading Dr Bernstein's Diabetes Solution as a book r e-book.
The premise is that rather than trying to have your short-acting insulin 'catch up' with the blood sugar rise (which on the graphs etc at least does not seem likely) that by a change in diet may allow the blood sugar rise to better match the action of the insulin.
Very low carbs intake lead to less early blood sugar rise and a portion of the protein in the meal is changed by the liver into glucose which is released relatively slowly (at least compared to carbs) at about the 3 hours mark. = Better matching.
You would need to discuss alterations of insulin doses with your doctor or DSN as carbs are reduced, to prevent hypos and by looking up dietdoctor.com you can ascertain the effect of very low carbs on your body and what adjustments you may need to make, particularly about salt and magnesium intake.
Again the above is just a suggestion, a way to deal with what is happening now.
I do hope your diagnosis is sorted soon but at least if your BSLs are improved that is one less worry for you.
Best Wishes.

 

[Diakat]

Just a hug from me @SB.25 sorry you did not get a clear answer and hope another doc can clarify.

 

[Resurgam]

At least you have insulin to inject as and when you need it - perhaps you should think of yourself as gloriously unique and just continue to experience each day as it comes, adjusting as necessary.

 

[becca59]

When did all your issues begin? I read something not long ago (NHS treatment guidelines,) which said they should not test for type until 6 months have passed as the tests are notoriously unreliable at the beginning of diagnosis.

 

[SB.25]

At least you have insulin to inject as and when you need it - perhaps you should think of yourself as gloriously unique and just continue to experience each day as it comes, adjusting as necessary.

I guess you have to look at the bright side right !

Sometimes I just wish I was a clear cut case though as it would be much more simple!

 

[SB.25]

When did all your issues begin? I read something not long ago (NHS treatment guidelines,) which said they should not test for type until 6 months have passed as the tests are notoriously unreliable at the beginning of diagnosis.

I have been diagnosed as diabetic since November 2018.... and I had the c peptide done back in December I think it was.

I’ll be intrigued to see what the next c peptide test says as the consultant seemed to think my one before was stimulated as my levels were 13.5 however it was actually a fasted test.....

 

[Member496333]

Sometimes I just wish I was a clear cut case though as it would be much more simple!

I’m starting to think that sometimes there just isn’t a clear-cut case, and that there can be overlaps where the patient presents with a little bit of everything. Certainly we know that resistance and deficiency can coexist on both sides, and it seems that even the antibody tests aren’t always conclusive, especially if we consider the “honeymoon” phase of autoimmune. Fatty pancreas seems less talked about, but there’s also a very strong likelihood that impaired pancreatic function is sometimes mistaken for autoimmune. Only the other day we had a person here that had been misdiagnosed type 1 for eleven years. Mix all this up with symptoms that can be common across all types and all phases, and it’s perhaps easy to understand where the confusion comes from.

Sometimes I think the only thing an unsure patient can do is attack a low carbohydrate diet armed with the right tools and see what happens. Can’t d any harm in any case so long as they’re vigilant with any medications that they may already be using.

Also, and I know I will get shot for this on here, but honestly I find it impossible to rule out the extremely rare possibility of reversing autoimmune diabetes. Other autoimmune conditions are reversible, and it wouldn’t be the first time that medical science has been wrong.

 

[becca59]

That didn’t follow their own guidelines then. Far too early for a correct result. Your next test may have different results.

 

[SB.25]

That didn’t follow their own guidelines then. Far too early for a correct result. Your next test may have different results.

Yes, I am going to do my c-peptide test on Tuesday morning as I understand from my last one that they take 4 weeks to come back. I guess my consultant can assess the situation then...

 

[Caeseji]

The mind absolute boggles at how many shades of diabetes there is alongside how many shades of just true mystery there is into the mindset of our medical care too.

I'm just glad that you've got something to help you for now instead of being left to just fend for yourself.

 

[SB.25]

The mind absolute boggles at how many shades of diabetes there is alongside how many shades of just true mystery there is into the mindset of our medical care too.

I'm just glad that you've got something to help you for now instead of being left to just fend for yourself.

Yes, I feel like I need a diagnosis though eventually....... I’m concerned that if I go down as a T2 I may have problems with rationing test strips etc - despite them saying I am treated as a T1 on a basal bolus regime. In my view, if it’s established that I produce very little insulin of my own and I am on a basal/bolus regime then I shouldn’t be rationed to test strips but you never know... I think it’s clear in any case I’m not a usual case...

Luckily today I tried my new insulin ratio on the MySugr app (I had been having problems with getting it to work since Friday) and I have been in target a lot more and avoided the dreaded peaks I suffer. The past week or so every time I ate (whether it was a normal amount or carbs or low carbs I would get to approximately 15).

I’m hoping this new ratio continues to work!!

 

[SB.25]

Well my Libre is showing I have been in target 86% of the time in the last 24 hours and only 2 minor hypos. I also have not gone above 11 (which is a miracle!). I also woke up on a 5 which hasn’t happened since I was diagnosed.

So all very positive. The only problem is I have felt sick (like I am going low) the vast majority of that time.... I assume this is because my levels have not been as erratic and a bit of a shock to the system.

Let’s hope I have another day of good levels

 

[kitedoc]

When bsls have been a bit on the high side, then with imporoved control and lower bsls it seems to worry the body's own sensors.
They seem to start sending signals as bsls fall a bit but not to hypo levels. The symptoms feel like the start of hypos but bsls are not low enough to be in true hypo range. We call them ' false hypos' .
Over a few weeks most of us find our bodies readjust and only signal when bsls are either low enough e,g say 3.6 mmol /l or less reached in a gradual fashion or when bsls fall quickly, the symptoms might start at say 4 or even 4.5 mmol/l.
There is variation from person to person and i have just put my figures in as an example.
Best Wishes !!

 

[SB.25]

When bsls have been a bit on the high side, then with imporoved control and lower bsls it seems to worry the body's own sensors.
They seem to start sending signals as bsls fall a bit but not to hypo levels. The symptoms feel like the start of hypos but bsls are not low enough to be in true hypo range. We call them ' false hypos' .
Over a few weeks most of us find our bodies readjust and only signal when bsls are either low enough e,g say 3.6 mmol /l or less reached in a gradual fashion or when bsls fall quickly, the symptoms might start at say 4 or even 4.5 mmol/l.
There is variation from person to person and i have just put my figures in as an example.
Best Wishes !!

thanks for the advice.
I haven't felt sick today but my blood glucose has been high due to have to do a stimulated c-peptide test where my levels ended up going to 20 and it has taken all day to get them down again!

Luckily for now I seem to be extremely hypo sensitive so I can feel the drop happening when I get to about 4.5 (I know when I am that low I will go hypo unless I treat)