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Hab1c result and confused....

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Emma17

New Member
Relationship to Diabetes
Type 1
Hi

So I was originally diagnosed with type 2 back in May, although they suspected type 1 due to how quickly it came on and being admitted to hospital with DKA. About 4 weeks later, received a letter from my consultant saying blood taken was not good enough for a GAD test. I then got another letter at the end of August confirming that I did indeed have type 1.
Fast forward to yesterday, I had my second appointment with the DSN who started to question me and whether I did have diabetes as my hab1c after 4 months was 40 and they had no copy of the letter from the consultant. I know it stupid but stopped my insulin and Metaformin and ate sugar yesterday, although it peaked to 11.6 this morning it's 8.9 before breakfast. I am completely confused...
 
You were on insulin before the Hba1c of 40? 40 without any medication would be non-diabetic, but if you had been taking insulin, that isn't the case.
(I am Type 2, but on insulin for some years. My Hba1c has been 41 or less for the last few years, and recently 36. I am still very much diabetic!)
 
silentsquirrel said:
You were on insulin before the Hba1c of 40? 40 without any medication would be non-diabetic, but if you had been taking insulin, that isn't the case.
(I am Type 2, but on insulin for some years. My Hba1c has been 41 or less for the last few years, and recently 36. I am still very much diabetic!)
Click to expand...
Yes I was on 32 units of insulin and 2g of Metaformin before the Hba1c test. The nurse couldn't understand why it happened.
 
I would restart the insulin, this was a nurse at your GP surgery? Perhaps you need to be referred back to the hospital clinic?
What type of insulin are you taking? Have you been having a lot of hypos to give that Hba1c? If not, sounds as though the insulin and met have been controlling your diabetes very well!
You do not want to risk a repeat of the DKA by stopping your insulin entirely.
I don't understand why the nurse could think you were not diabetic!
 
Emma17 said:
Hi

So I was originally diagnosed with type 2 back in May, although they suspected type 1 due to how quickly it came on and being admitted to hospital with DKA. About 4 weeks later, received a letter from my consultant saying blood taken was not good enough for a GAD test. I then got another letter at the end of August confirming that I did indeed have type 1.
Fast forward to yesterday, I had my second appointment with the DSN who started to question me and whether I did have diabetes as my hab1c after 4 months was 40 and they had no copy of the letter from the consultant. I know it stupid but stopped my insulin and Metaformin and ate sugar yesterday, although it peaked to 11.6 this morning it's 8.9 before breakfast. I am completely confused...
Click to expand...
Hi Emma

If you have been confirmed as T1, you will be on a different management than when T2.
Do you know what tests they did when the checked for T1. This could be a Gad antibody test, which will pick up the antibodies that are responsible for the destruction of the Beta cells that make insulin. I remember my test as it was an arterial sample which hurt when they did it. They may also have done a c-peptide test in either blood or urine.

With the levels that you are getting you definitely need something. In the early stages of late onset T1 it is easy for the Practice team to misdiagnose and it can be confusing as once injecting insulin the remaining Beta cells get a bit of a rest and then decide to play again. With T1 you need insulin to replace what your body can no longer make.

It is important to follow up. Do you still have a copy of your letter? Do you remember the name of the consultant? Whilst sorting this out it would be worth keeping to reduced carbs to avoid raising your glucose levels.

Keep in touch and let us know how you get on.
 
Emma17 said:
Yes I was on 32 units of insulin and 2g of Metaformin before the Hba1c test. The nurse couldn't understand why it happened.
Click to expand...
Many people on here have been missed diagnosed Type 2 to be really Type1, the way I read your post the Consultant has said you are Type 1, I am presuming he has results of tests you had that have confirmed.
 
@Emma17 Take your insulin! I don’t understand why the nurse was confused by your HbA1C. We’re they not aware you were on insulin?? I don’t get this.

Perhaps they just weren’t fully concentrating? Eg I’ve had Type 1 for years yet during my last pregnancy the local midwife was dip-testing my urine sample while I was telling her about various aches and pains - and she said “At least you don’t have diabetes”! (Because there was no sugar in my sample). After I raised my eyebrows at her, she looked down at my Notes and apologised.

So your HbA1C might be ‘normal’ but the relevant fact is that that’s because you’re on insulin! Just like my ‘not diabetic’ urine sample did not mean I don’t have Type 1.

As said above, early after diagnosis, the beta cells often recover a little and produce some insulin by themselves, but that doesn’t mean you don’t have Type 1. It’s a known phenomenon and called the Honeymoon Period.

You need your insulin and you should never stop taking it if you’re Type 1. It’s potentially dangerous.
 
The number of examples even in the 2 months since I joined of people over 30 being diagnosed t2 only to be t1 has been eye opening. Mine diagnosed t2 when I had ketones in my urine then the hospital lab sent an ambulance in the night to get me.

The DSN thing confuses me. I make no secret of being in the trade so to speak. If you have a consultants letter and the DSN is in the same team or trust then it should be visible to them. And why unilaterally change treatment if these cases are challenging, they are meant to be multidisciplinary!
 
I think it probable the DSN Emma refers to is a "Diabetes Nurse" at the GP Practice, rather than an actual DSN.
I read Emma's first post as Emma herself decided to stop the insulin, rather than the nurse advising this - but not totally clear.
 
Hi @Emma17 . Your second appointment with the nurse , was she a DSN at the hospital diabetes clinic or a nurse at your Gp practice ?

I am an insulin dependant T2 , but my Hb1ac last yr was 42 previous to that it was lower.
My good Hb1ac tests are due to insulin if come off it my levels will rocket
 
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silentsquirrel said:
I think it probable the DSN Emma refers to is a "Diabetes Nurse" at the GP Practice, rather than an actual DSN.
I read Emma's first post as Emma herself decided to stop the insulin, rather than the nurse advising this - but not totally clear.
Click to expand...
Great minds think alike
 
Hi
It was a DSN with the community diabetes team. They had no copy of the letter confirming the GAD results (which were 186) from the consultant. I thought I was going mad and had read it wrong so called the hospital team, who confirmed what the letter said and that they would send a copy over to stop the confusion.

I will start the insulin again (it was myself who took myself off of it as I was so confused and was starting to think that the hospital had got it wrong and had mixed up my results with someone else). It was purely to see what my sugars did, from 8.9 this morning to 6.6 before lunch, but have been very active. Also I have been having a few hypo's on the Novomix 30 (which was the treatment for T2 diagnosis,
 
Emma17 said:
Hi
It was a DSN with the community diabetes team. They had no copy of the letter confirming the GAD results (which were 186) from the consultant. I thought I was going mad and had read it wrong so called the hospital team, who confirmed what the letter said and that they would send a copy over to stop the confusion.

I will start the insulin again (it was myself who took myself off of it as I was so confused and was starting to think that the hospital had got it wrong and had mixed up my results with someone else). It was purely to see what my sugars did, from 8.9 this morning to 6.6 before lunch, but have been very active. Also I have been having a few hypo's on the Novomix 30 (which was the treatment for T2 diagnosis,
Click to expand...
You need to be on a proper Basal /Blous many of the Type 2 on here are also this regime, they find more flexible.
 
Mixed insulins suit very few people IMO @Emma17 Now you have the Type 1 confirmation, ask to be switched to a basal/bolus regime. You’ll then be able to fine tune the insulin to your needs. It’s more injections but a lot more flexibility.
 
silentsquirrel said:
I think it probable the DSN Emma refers to is a "Diabetes Nurse" at the GP Practice, rather than an actual DSN.
I read Emma's first post as Emma herself decided to stop the insulin, rather than the nurse advising this - but not totally clear.
Click to expand...
Ah, ok I see. Still odd that the gp didn't get a copy of the letter.
 
Not with my GP surgery, they recently missed my repeat prescription for NovoMix and I had just enough for the weekend. The consultants secretary very kindly emailed a copy over.
 
Emma17 said:
Not with my GP surgery, they recently missed my repeat prescription for NovoMix and I had just enough for the weekend. The consultants secretary very kindly emailed a copy over.
Click to expand...
Hi Emma, I am glad that you now have a correct diagnosis of T1 (can you change your profile to show that as it helps people give appropriate responses to any questions that you have)

As others have said it is very unusual for T1 to be using mixed insulin nowadays, so it would be well worth asking to switch to the Basal (background Insulin ) /Bolus (quick acting insulin for carbs eaten) (also known as Multiple Daily Injections or MDI) as this makes life a lot more flexible. It allows you to eat when you want or miss meals completely, and also to make adjustments to your background insulin to suit your needs. With the mixed insulins you need to have consistent behaviours and the same amounts of carbs at each meal to make it work.

Once you switch to the separate insulins you will be able to match it to what you want to do need each day.
 
Please do restart your insulin @Emma17

I have seen quite a few members over the years who have been misclassified and finally correctly classified as t1, but when they begin their insulin it can seem like their pancreas gets a bit of a second wind for a short while (sometimes called the honeymoon period).

I wonder if this might explain your results without insulin?

The snag is that you risk burning out any remaining beta cells you have limping on (and bravely dodging autoimmune attack!)... and those are really handy for the future to help smooth out your pancreas-impersonation efforts 🙂
 
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