Removal from register

PerfectStorm

Well-Known Member
Messages
207
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I was just wondering anyone with good T2 control has been removed from the diabetic register?

I was diagnosed in 2014 - I had gestational diabetes and then after my son was born I had pre-diabetic levels which rose to diabetic levels (53) a few months after my son was born. I panicked at the diagnosis and did everything I could to get levels under control. They dropped to 38 and have generally stayed at 40/41 since then. I have had a couple around 45. This is usually when I have let things slip in terms of diet.

I have seen diabetic nurses and GP over the years and they have all said I am diabetic but know I am generally pretty well controlled (although could obviously be better when they slip to 44/45). I've been repeatedly talked to about taking statins etc because of my diabetes.

I received a call a couple of weeks ago from what I think may be a new (to the Practice) diabetic nurse. She spoke about my cholesterol levels but also mentioned she was going to speak to GP about my diabetic diagnosis saying I have only had one HBA1c in diabetic level so shouldn't be diagnosed. She phoned me back yesterday and said the GP has removed my diabetic diagnosis/removed from the register.

She says NICE guidance says diagnosis should only be made with two results in diabetic level. This may be a change as the current guidance is dated September 2019. I've explained the only reason I don't have diabetic levels routinely is because I restrict my diet so much to achieve that - if I was to eat pasta/rice/bread etc my levels would be well into diabetic ranges.

It seems farcical and gives a false picture, to remove a label of diabetes when it is blatantly obvious that I have it as I cannot eat 'normally' without having high levels. I haven't been testing loads lately but my fasting level this morning was 7.1.

The nurse says I will still have annual HBA1c because I had gestational diabetes and because my cholesterol levels are 6, they will monitor these as well (presumably for now). I won't get the eye check and presumably won't get the foot check and full annual blood/urine tests done.

Although removing a 'label' may seem a good thing, it doesn't really bother me having this label as it is accurate and ensures I receive good monitoring. That monitoring helps to keep me in check. Also, the eye check is really important as the thought of losing eye sight is terrifying! I'm a bit concerned I won't be receiving these checks anymore.

The GP is going to call me tomorrow to discuss this as it was apparently his decision to remove the diagnosis from my records (despite me being pretty sure he was the one to confirm the diagnosis in the first place back in 2014)

Just wondered what your experiences are - if you have generally normal levels has your diagnosis been removed? Do you still receive full annual testing/eye check/foot check etc?
 

hankjam

Well-Known Member
Messages
4,311
Type of diabetes
Treatment type
Diet only
My diagnosis date won't change and will always be recorded.
My GP has changed my status to "Remission", which I am happy with.
The only check I get now is my annual bloods in my birth month and eye test once a year in the month I was diagnosed.
Foot checks are no longer available in my area, which I think is criminal, for those who have a deteriorating health...
North East Fife.
 

Rachox

Oracle
Retired Moderator
Messages
15,905
Type of diabetes
I reversed my Type 2
Treatment type
Tablets (oral)
Hi @PerfectStorm
My feeling is that yes a diagnosis should usually be made with two diabetic HbA1c results. However the second one is done straight away and is just to be sure that the first one wasn’t a mistake. It sounds like you only had one test at diagnosis. So for instance in May ‘17, I had one test which came out as 67 and a second one ten days later which was 70. I radically changed my diet and take a modest dose of Metformin so my HbA1cs have been in the 30s for the last 2 and a half years now, but there has never been mention of me coming off the register. In your position I would express my concern that I have been removed from the register and would then be missing out on important tests. Oh and well done on keeping things under control.
 

bulkbiker

BANNED
Messages
19,575
Type of diabetes
Type 2
Treatment type
Diet only
@PerfectStorm
Do you know if you'll be classified as "in remission" or "diabetes resolved".
If the former you should still get eye tests and semi annual HbA1c (you might have to remind your surgery that this should happen)
If the latter then you won't.. I'd push for the first in your shoes.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
@PerfectStorm
Do you know if you'll be classified as "in remission" or "diabetes resolved".
If the former you should still get eye tests and semi annual HbA1c (you might have to remind your surgery that this should happen)
If the latter then you won't.. I'd push for the first in your shoes.

This person, in the latter category - "Resolved" still receives an annual A1c and Eye Screening.

To be honest, it sees to me, these things are made up as they go along, at a local level
 

bulkbiker

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Messages
19,575
Type of diabetes
Type 2
Treatment type
Diet only
This person, in the latter category - "Resolved" still receives an annual A1c and Eye Screening.

To be honest, it sees to me, these things are made up as they go along, at a local level

But according to NICE guidelines"resolved" should mean a misdiagnosis and no further testing..

Were I you I'd be pushing for it to be changed to remission.. I have had a GP and area diabetes nurse agree and 16 patients at my surgery re-classified as "In remission" from "resolved" as the GP couldn't admit that they might have been misdiagnosed.. hehe
 
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copilost

Well-Known Member
Messages
354
Type of diabetes
Type 2
Treatment type
Diet only
from an insurance perspective this might be a 'good' result!
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
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But according to NICE guidelines"resolved" should mean a misdiagnosis and no further testing..

Were I you I'd be pushing for it to be changed to remission.. I have had a GP and area diabetes nurse agree and 16 patients at my surgery re-classified as "In remission" from "resolved" as the GP couldn't admit that they might have been misdiagnosed.. hehe

To be honest, at the moment I have bigger fish to fry, with some eye-wateringly expensive thyroid meds, so I'll not make waves over a word for now.
 

Dark Horse

Well-Known Member
Messages
1,840
NICE guidance states:-

Diabetes is usually diagnosed by an HbA1c of 48 mmol/mol (6.5%) or more. If the use of HbA1c is inappropriate (for example in people with end-stage chronic kidney disease), type 2 diabetes is diagnosed by a fasting plasma glucose level of 7.0 mmol/L or greater.
  • In an asymptomatic person, the diagnosis of diabetes should never be based on a single abnormal HbA1c or fasting plasma glucose level; at least one additional abnormal HbA1c or plasma glucose level is essential. If the second test results are normal, it is prudent to arrange regular review of the person.
  • In a symptomatic person, diabetes can be diagnosed with more confidence on the basis of a single abnormal HbA1c or fasting plasma glucose level (although a second test may be prudent). Be aware that severe hyperglycaemia in people with an acute infection, trauma, or circulatory (other stress) may be transitory and should not be regarded as diagnostic of diabetes.
  • https://cks.nice.org.uk/diabetes-type-2#!diagnosisSub
Your fasting glucose of 7.1 mmol/l puts you in the diabetic range - worth mentioning this to your GP, along with your explanation of the lengths you go to control your blood glucose.
 
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bulkbiker

BANNED
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19,575
Type of diabetes
Type 2
Treatment type
Diet only
To be honest, at the moment I have bigger fish to fry, with some eye-wateringly expensive thyroid meds, so I'll not make waves over a word for now.
Indeed there's a time and a place.. just make sure your GP doesn't retire !
 

DCUKMod

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Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Indeed there's a time and a place.. just make sure your GP doesn't retire !

I'm not too impressed at the moment. My preferred GP moved out of area, so she has gone. The rest aren't covering themselves in glory right now, so we're actually considering a move, but I just need this medication issue resolved before doing anything.

Fingers crossed for the blood results I'm currently waiting impatiently for, and then my Endo review.
 

bulkbiker

BANNED
Messages
19,575
Type of diabetes
Type 2
Treatment type
Diet only
I'm not too impressed at the moment. My preferred GP moved out of area, so she has gone. The rest aren't covering themselves in glory right now, so we're actually considering a move, but I just need this medication issue resolved before doing anything.

Fingers crossed for the blood results I'm currently waiting impatiently for, and then my Endo review.
Hope all goes well..fingers crossed.
 

Bluetit1802

Legend
Messages
25,216
Type of diabetes
Treatment type
Diet only
2 years ago I was marked as Diabetes Resolved, which the GP backdated to my first HbA1c under 48 (it was 46, and all subsequent ones over the last 6 years have been between 40 and 44. I have 2 tests a year, so that is a lot of tests. I took issue with it, but he was determined to keep it.

Since then he has changed it to diabetes in remission, with the same backdated date. My nurse last year added a new coding "non-diabetic hypoglycemia" which I take to mean pre-diabetic. A couple of months ago my GP had cause to look at my records for the first time in a while, and he deleted the "non-diabetic hypoglycemia" coding, leaving the in remission coding in place.

Despite all this, I continue to receive 6 monthly blood tests for the usual stuff, an annual review with the nurse, an annual urine analysis test that is sent to the lab, and annual eye screening. All I have lost is the foot check.

I believe that once a firm diagnosis has been made, no matter what happens later, the eye screening will continue. Other than that, it seems to be pot luck as to what your particular surgery does. I am lucky that nothing has changed for me apart from the foot check.
 
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Member496333

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I'm the other way around. Three consecutive HbA1c of ~30 mmol/mol, a current 14-day running average of 4.4mmol/L, and a minuscule HOMA-IR of 0.3 when last tested. Yet my surgery still insists I'm diabetic. I think they get paid to tickle my feet once a year, if I'm honest. They're all pretty clueless anyway. I should be charging them for the advice. I probably won't be attending my next review. They can label me whatever they like.

That is just my experience, of course. I fully understand that others have different views and different doctors.
 
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Daphne917

Well-Known Member
Messages
3,320
Type of diabetes
Treatment type
Diet only
I'm the other way around. Three consecutive HbA1c of ~30 mmol/mol, a current 14-day running average of 4.4mmol/L, and a minuscule HOMA-IR of 0.3 when last tested. Yet my surgery still insists I'm diabetic. I think they get paid to tickle my feet once a year, if I'm honest. They're all pretty clueless anyway. I should be charging them for the advice. I probably won't be attending my next review. They can label me whatever they like.

That is just my experience, of course. I fully understand that others have different views and different doctors.
Same here. I’ve had a non diabetic Hba1c for approx 7 years and I consider myself to be in remission my DN still insists I’m diabetic albeit well controlled and likes me to have 2 reviews per year.
 
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