I have no clue what to do...please help

[Oldvatr]

Hi HSSS, I do get what you are saying but at the start of the diabetes 'journey', it can take weeks to establish what type you have and if you change your diet drastically whilst still undergoing assessment then this in itself can mask any true diagnosis. If for example, a person immediately cuts out carbs in the days following diagnosis, the first blood test they have might come up with a low hb1ac. Mine would have because I too panicked and went straight for low carb. This meant it took weeks of extra confusion before they eventually did a C Peptide & GAD test which showed type 1. They kept saying 'Well this person has normal glucose levels' and yes I did, but ONLY because I wasn't eating any carbs. After around 2 months the proper tests were done but in the meantime I was on insulin, off insulin, back on it, hypo'ing, off insulin, back on it....well, you get the drift! I personally think that there could be real problems if a person who later turns out to be type 1 is 'advised' to go low carb before diagnosis although I agree, AFTER diagnosis then at least an informed choice can be made.

A good point here, but the HbA1c is a 3 monthly average, so is not really affected in the short term. I believe one of the problems for T1D DX is that often there is a honeymoon period while the pancreas still produces insulin and so blood tests alone do not normally confirm T1D, which as you say needs the GAD and c-peptide tests. Those last two would not be affected by low carbing so the DX should still be made effectively. I say should, since not all practices will order the GAD and c-peptide testing nowadays unless there has been a DKA admission with concurrent high blood sugars.

 

[KK123]

A good point here, but the HbA1c is a 3 monthly average, so is not really affected in the short term. I believe one of the problems for T1D DX is that often there is a honeymoon period while the pancreas still produces insulin and so blood tests alone do not normally confirm T1D, which as you say needs the GAD and c-peptide tests. Those last two would not be affected by low carbing so the DX should still be made effectively. I say should, since not all practices will order the GAD and c-peptide testing nowadays unless there has been a DKA admission with concurrent high blood sugars.

Hi Oldvatr,to be clearer, what happened was that I was told to do plenty of glucose tests (finger pricking) as well, and I had to keep a diary of everything I ate and did (normally) so they could get an idea of how my levels were going. I immediately started low carbing so my levels were showing mainly low which made them question if I was diabetic (at all) and if I was type 2 or type 1. This went on for a while and I suppose my point was if you start doing something completely different when they are trying to diagnose you, it could mask the symptoms. (I meant the first h1ac test AFTER 2 months btw, I know it's an average across 2/3 months). As an aside, I was told the C Peptide test WOULD be affected by low carbing because low carbs meant a lower insulin production and a lower insulin production meant a lower C peptide? I may be wrong of course but I am sure that is what the Consultant said.

 

[Oldvatr]

Hi Oldvatr,to be clearer, what happened was that I was told to do plenty of glucose tests (finger pricking) as well, and I had to keep a diary of everything I ate and did (normally) so they could get an idea of how my levels were going. I immediately started low carbing so my levels were showing mainly low which made them question if I was diabetic (at all) and if I was type 2 or type 1. This went on for a while and I suppose my point was if you start doing something completely different when they are trying to diagnose you, it could mask the symptoms. (I meant the first h1ac test AFTER 2 months btw, I know it's an average across 2/3 months). As an aside, I was told the C Peptide test WOULD be affected by low carbing because low carbs meant a lower insulin production and a lower insulin production meant a lower C peptide? I may be wrong of course but I am sure that is what the Consultant said.

According to the latest NICE guidelines, the diagnostic criteria to be followed by NHS staff is as defined by the WHO
https://www.who.int/diabetes/publications/diagnosis_diabetes2006/en/
This uses a fasting blood test (8 hr fast) and a 2 hr random blood test or OGTT test to diagnose T1D, Certainly this is how I was dx'ed many moons ago. An HbA1c test follow on and weight loss checks and family history are usually included in the second consultation to confirm.

In my area, any blood test using venous blood (i,e, HbA1c) takes 3 days or more to get a result back so is in itself not a fast process. So the NICE advice is if the IFB test is high then it needs immediate transfer to a specialist team for immediate attention. I believe that sudden unexplained weight loss is a significant factor for T1D, so going low carb could in time possibly give a false interpretation the other way due to weight loss. But LC is not a fast acting process either.

The other marker that is sometimes used is ketones above 4 mmol/l with high sugars. But my GP does not have a meter that can read ketones, so they use the urine test kit instead, But DKA can occur with any insulin dependant metabolic disorder so is only indicating an insulin insufficiency. This marker is the Blue Light switch.

 

[KK123]

According to the latest NICE guidelines, the diagnostic criteria to be followed by NHS staff is as defined by the WHO
https://www.who.int/diabetes/publications/diagnosis_diabetes2006/en/
This uses a fasting blood test (8 hr fast) and a 2 hr random blood test or OGTT test to diagnose T1D, Certainly this is how I was dx'ed many moons ago. An HbA1c test follow on and weight loss checks and family history are usually included in the second consultation to confirm.

In my area, any blood test using venous blood (i,e, HbA1c) takes 3 days or more to get a result back so is in itself not a fast process. So the NICE advice is if the IFB test is high then it needs immediate transfer to a specialist team for immediate attention. I believe that sudden unexplained weight loss is a significant factor for T1D, so going low carb could in time possibly give a false interpretation the other way due to weight loss. But LC is not a fast acting process either.

The other marker that is sometimes used is ketones above 4 mmol/l with high sugars. But my GP does not have a meter that can read ketones, so they use the urine test kit instead, But DKA can occur with any insulin dependant metabolic disorder so is only indicating an insulin insufficiency. This marker is the Blue Light switch.

Yep, all of the above is looked at I believe if type 1 is suspected (or at least most of it) and then at the end of it all they make a decision. I think it just goes to show how many factors are taken into account which is why I strongly believe making too much of a 'lifetsyle' change in the first instance is not necessarily the best thing to do. I wholeheartedly feel for anyone presenting as a 'type 2' as the only test for that diagnosis seems to be 'Are you fat or not'.

 

[Oldvatr]

Hi HSSS, I do get what you are saying but at the start of the diabetes 'journey', it can take weeks to establish what type you have and if you change your diet drastically whilst still undergoing assessment then this in itself can mask any true diagnosis. If for example, a person immediately cuts out carbs in the days following diagnosis, the first blood test they have might come up with a low hb1ac. Mine would have because I too panicked and went straight for low carb. This meant it took weeks of extra confusion before they eventually did a C Peptide & GAD test which showed type 1. They kept saying 'Well this person has normal glucose levels' and yes I did, but ONLY because I wasn't eating any carbs. After around 2 months the proper tests were done but in the meantime I was on insulin, off insulin, back on it, hypo'ing, off insulin, back on it....well, you get the drift! I personally think that there could be real problems if a person who later turns out to be type 1 is 'advised' to go low carb before diagnosis although I agree, AFTER diagnosis then at least an informed choice can be made.

We are not talking about a newbie in this thread. The OP says 3 years since DX as T2D so the advice on diet is appropriate, especially considering that it was the start of the weekend so prompt action was not unwarranted, I believe that what was suggested was to tide them over the weekend so they could get advice after. It was not IMHO suggesting a lifestyle change on a permanent basis, although it could become one if desired. The warning that was given that if there was no improvement seen then it may be necessary to involve the out of hours services in case there was any underlying problem with insulin delivery. There was a slight improvement which established that some insulin was getting through, and it remains to be seen if that improvement continues.

 

[KK123]

We are not talking about a newbie in this thread. The OP says 3 years since DX as T2D so the advice on diet is appropriate, especially considering that it was the start of the weekend so prompt action was not unwarranted, I believe that what was suggested was to tide them over the weekend so they could get advice after. It was not IMHO suggesting a lifestyle change on a permanent basis, although it could become one if desired. The warning that was given that if there was no improvement seen then it may be necessary to involve the out of hours services in case there was any underlying problem with insulin delivery. There was a slight improvement which established that some insulin was getting through, and it remains to be seen if that improvement continues.

Dear me Oldvatr, I wasn't suggesting you were at fault in any way, I know who you were replying directly to and why, my post was simply to provide further information that the poster or others might find helpful. I too was classed as 'pre diabetes' for 3 years prior to a type 1 diagnosis so thought my post might still be helpful to the poster (whose levels were sky high that **might** have suggested something else was going on) and to any others who were newbies. I think we have all heard of so called type 2s who actually weren't.

 

[Oldvatr]

Dear me Oldvatr, I wasn't suggesting you were at fault in any way, I know who you were replying directly to and why, my post was simply to provide further information that the poster or others might find helpful. I too was classed as 'pre diabetes' for 3 years prior to a type 1 diagnosis so thought my post might still be helpful to the poster (whose levels were sky high that **might** have suggested something else was going on) and to any others who were newbies. I think we have all heard of so called type 2s who actually weren't.

As I said, you raised a valid point

 

[RooMumOf3]

I'm so glad I've found all you guys. We have been monitoring still and range is averaging 20. We have ketostix which look perfect at the mo but going to keep looking at it a few times a day just to be sure. He had his phone call today, and they have said he has new meds on a prescription which he will be given tomorrow, he is having a full mot of bloods repeated, ketones being checked, another foot sensation test, and being sent for another eye check just cos it was so high.
We don't know what the new meds are yet, but am so thankful for all the advise and info. We've been on the diabetes journey for 3 years but it's been very steady and not concerning and then this hit us like a brick and was so out of the blue, it really worried me and him although he won't admit it.
I'll pop a note on tomorrow evening when we have some answers. Thanks all x

 

[Resurgam]

That is still really high - but is there some reason for it, such as eating the 'free foods' on the slimming world regime?