Shocked

[jenrose]

I just had my diabetes review with the diabetes nurse. I should have been delighted with the hba1c being 45 (about 6.3 per cent), especially as the nurse had reduced me from 2 x Metformin 500 mg a day to 1 x Metforming 500 mg eighteen months ago but was absolutely shocked when she said that my levels were so good the last few times that she thought I was not diabetic and she was going to take me off the computer!!! I was diagnosed in with type 2 diabetes in 2006 with a fasting blood glucose of 17.0 mmol/l. My blood pressure went up to 160 systolic pressure and the doctor I saw put me on the 2 x Metformin 500 mg a day which she was not pleased about. After eight months I saw the diabetes nurse again and my hba1c was then 6.8 per cent and I continued on a lower carb diet and the tablets until 18 months ago. I told the nurse I definitely was diabetic still as if I eat something too much carb/sugar my levels go in to double figures after two hours. I did have access to test strips on prescription for a few months but since they were stopped buy my own strips. She said 'oh so you test?'. I also reminded her that I had been diagnosed with a fasting blood sugar of 17.0 and she checked this and said 'oh yes you are right'. She had also forgotten I was still taking one tablet a day so now she has told me to drop that tablet too and come back in two months time for another hba1c test. I told her I would not want to eat less as I only weigh 7 stone now (I am short but am still thin at that). She asked what exercise I do and I said I walked the dog 5 days a week 2 miles usually and did gardening and housework although now I have bad neck and shoulders which I just had a scan for and am waiting for result of this. I also told her I suffered from the short term complications such as thrush, thirst, going to the loo a lot, teeth abcess, blurry vision and even toppled over in the street like I was drunk once before and after being diagnosed and would not want that to happen again.
I feel gutted that I have done so well managing my condition and have this happen. If I was to be treated as non-diabetic then I would not have access to tablets if I needed them and the health checks I get such as for retinopathy, my feet being looked at, the flu jab (I get asthma if I get bronchitis).
Has anyone else been told they are not diabetic just becuase they have acheived good hba1c test? I feel that if it had been someone else who would not argue their case they could be taken off the diabetes register when they are diabetic this would be down right dangerous for them.

 

[mo1905]

Must admit I initially thought most people would be pleased to be told they were no longer diabetic but I understand your concerns. The only test I suppose would be to wait until your next test in 2 months time. Until then, try to lead a relatively normal lifestyle/diet. Do you still have any test strips so you can check you don't get too high again. ? Good luck !
Mo


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[Pez68]

Hi Jen, diagnosed in late June with 12.7, last month had my first 3 month review with result of 30 in new money, I follow low carb, weight loss 4 stone, and take one metformin with dinner, my Dn said the same, if next review still the same she'll sign me off!! I asked her not to because I'm the type of bloke who needs to keep the pressure on or I'll go back to the old habits. She was fine with that as I'll only see her 4 times in the year. I'd suggest if you have the willpower of none like me, you ask if you can be reviewed as normal or at least until you're comfortable?

Good luck and great results [SMILING FACE WITH OPEN MOUTH]

Andy


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[Lenny3]

I think it's ridculous of your DSN to take you off the register. Your still diabetic, just well controlled. Also don't the surgery get money each year because you are diabetic? Wouldn't that mean they lose that? I feel that if they think your doing so well then maybe they should reduce how often you see them.

Currently I have been going every 3 months for an Hba1c. This time we are leaving it till my yearly review which will make it about 5 months.

I agree with Pez, I need the constant push to be good.

 

[annew]

Hi Jen!
I was diagnosed in August 2012 and had fasting blood glucose of 18. I refused metformin, immediately went low carb. It worked for me, lost weight, Hba1c came right down and at a review in March my DN said I was no longer at diabetic levels - we both knew that did not mean I was no longer diabetic! just in control - and could come off the list. Was also moving house and changing GP shortly afterwards.
I was absolutely delighted to come off their lists! I was told by both old and new surgeries that I could have an Hba1c test on request, and recommended at least yearly. Don't see why the surgery should get money for something I am managing myself. I have seen with members of my own family what happens when you follow all the NHS advice, and trot along to all their checks, appointments etc. you just get worse and as they expect you to deteriorate, so you do. Hopefully, by maintaining excellent control like you already have, there is less likelihood of retinopathy, neuropathy etc.
We are all different, and I was certainly given the choice by my DN - I could have stayed on "the list" had I wanted to. After all care is supposed to be patient centred. Hope you will get what you want.

 

[Andy12345]

hi, so this list benefits us because we get free scripts and tests we probly dont need if we are well controlled? pffft take me off!

 

[annew]

I thought I read that GPs get £2000 per annum per patient for each one on their diabetic "list." I tried to do a bit of internet research on this but could not find any clear information at all. Asked the DN (we got on quite well ) and apparently it is not simple - they have targets to reach - I think it is 9 - and they get paid according to how well they meet those targets. She did not dispute the figure of £2000 so in some cases could be more.

Think the targets as well as standard NHS advice need revision :lol:

 

[sugartoohigh]

I'm shocked for you.I got told I'm type 2 the other month and didn't now it was even possible to be free from it once you've got it?

I've found lots of conflicting advise and levels of care form some NHS staff.Some good some seem dangerous.My heart goes out to you.If in doubt complain higher up the chain.

STH

 

[hanadr]

I too would doubt it if someone told me I wasn't diabetic after an Hb A1c of that level. A truly non diabetic level would be nearer 4.6% 0r 27 in new money. I'd ask for an Oral glucose Tolerance test to confirm this.
My Hb A1c is never as high as 6% and I'm still diabetic
Hana

 

[Davidvwt2]

Hello Jen, I too was told that I no longer suffered from diabetes ( which was what I wanted to hear!!) taken off of Metformin which I couldn't continue to take because of stomach side effects etc. Told this by nurse and sent away for 3 months . I lasted about 5 months before feeling dreadful again and am now happily on meds that seem to be working for me. Diet and exercise next ,and of course, I am changing my GP to a larger practice where they have diabetes trained nurses. I now now that diabetes is a choric disease and does not simply go away , I think I agree with those who say they have good control of their symptoms. Good luck!!
David

 

[375lindyloo]

Same happened to me after I did Newcastle diet, lost a lot of weight and went low carb. Readings were 12 at diagnosis. Doc cancelled strips and lancets immediately but has left me classed as diabetic on computer for time being when I voiced concerns about Retinopathy checks and reminded him that he had told me once a diabetic always a diabetic at diagnosis. I have worked hard to reverse diabetes but thought I would still get checks and strips and lancets as they have helped me to find foods that didn't spike my bloods. I don't use that many anyway only new meals as I have a good knowledge now. Am still going to test by buying my own. My yearly test is due in Dec and it will be interesting to see if non diabetic results have been maintained. Good luck to you.

 

[jenrose]

Thanks Mo, I do have some test strips (bought by myself). I am pleased to here that you have lost such a lot of weight Pez I think it is a good thing to stay on the register and not just for motivation. Over the last 7 years since I was diagnosed I have read that we cannot be 'cured' of diabetes but we can achieve good control. I have also read that even if we have good control after a number of years complications may arise. I was reading the latest Balance magazine and on the 'ask the experts' page there is a reply to a lady from London who asks 'Does a cure exist?' after she had seen a Channel 4 program about a group of women who were told that they were no longer had type 2 diabetes. The reply from the dietician Pav was that is '....currently no cure for either Type 2 or Type 1 diabetes.' Pav also wrote that 'Most people with Type 2 diabetes can control the condition very well without medication. However, they do still have the conditioan and should continue to have annual reviews of both their HbA1c and screening for complications.'

Annew I am pleased that you can control your diabetes without medication. When you mentioned that the surgeries have targets and gave the target of 9 what does the 9 mean?

I feel that we should be patted on the back for achieving good control instead of being scared of being taken off of the register although I appreciate that some people may like to come off. If she had asked if I wanted to come off it wouldn't of been so bad. Since 2003 I have taken medication to reduce blood pressure and cholesterol so need to have blood tests for this. I have only had an annual review since 2006 and my feet are seen every six months by the podiarist (I have mild treatment for corns and hard skin on the ball of my foot) and never get weighed so I am hardly taking up much of the DN's time and would take up more of her time if I started to have short term complications such as thrush, bladder infections and chest infections as I saw her first a few years ago. I have never had any advice from her. Oh she did ask if I wanted to see a dietician again. I wondered why I would when I was doing so well? At first I did see a dietician but she told me she knew nothing about diabetes and when I wrote down what I ate at breakfast I was told that was fine. From a nutrition point of view perhaps a bowl of cereal, toast, banana and glass of orange juice is but not for diabetics. I began eating the above as having gone on a 'low fat' diet and did not realize this was not a good thing to do.

 

[Andy12345]

so presumably you could get cheaper insurances if no longer db?

 

[annew]

When I said there were 9 targets I meant there are 9 target areas - I have no idea what they are. But for example surgeries used to be paid (don't know if they still are) on the % of the eligible patients on their list who took up the flu jab. So perhaps one is the number of diabetics attending regular checks - only guessing!!!! And some targets will be clinical. So it is not straightforward at all.

so presumably you could get cheaper insurances if no longer db?

Didn't like to mention this before being of so great an age that it can be difficult to get travel insurance anyway but I think yes, better if you have nothing to declare!!!!

 

[lakelandgrey]

When I was diagnosed with type 2 about 3 years ago I asked my doctor if, with treatment, I could eventually become free from diabetes. He said 'No, once you are diabetic you will always be diabetic' and I am on 3x850mg metformin a day. I test myself regularly and am normally between 4 & 7 but it can rise to 12 if I overdo the breakfast cereal!

 

[jenrose]

Annew - yes it would be interesting if there is a 'target' of the number of people on the register for diabetes? I have even wondered if they are carrying out some kind of experiment to see what happens when people with good control come off tablets, my DN seemed to have forgot that I was still taking one Metformin a day. My DN has said before that Metformin is very mild and if that is so there won't be much change. When I went down to 1 x Metformin 500 mg I did alter the diet to compensate but which is why there was not much change with the hbA1c which was 43 the time before but I don't feel that I can cut down that much more. She asked me if | wanted to see a dietician but this is difficult because I have IBS as well. I am sure she would tell me to eat more carbs so I declined.

Lindyloo - it would be interesting to see how you have done in your annual review

David - I am pleased that you are sorted out and on tablets that agree with you now, my stomach is playing up and I have come off the Metformin and don't understand that?

lake and grey - I find that although my fasting bg is not bad if I eat things higher carb my bg rises a lot too.

Sugartoohigh - I see you have just been diagnosed and although, in the press etc, diabetes type 2 seems easy - just diet and exercise it is not so simple as this for a lot of people and there are lots of things to learn. Remember Rome was not built in a day and you don't have to learn it all at once as you may find you are overwhelmed and can't take it all the information in in a short space of time but don't worry it will. To make it even harder there are changes that occur with reference to advice or practices so we have to keep up to speed as well. I am finding out things I did not know.

Andy - re the cheaper insurance, in theory not on the register not diabetic but say this scenario what if a person comes off the register and has a stroke or heart attack or something else and goes in to hospital and they found the blood glucose to be high and they said 'I have news for you you are diabetic?' What to say, like 'but the DN said I did not have diabetes any more and took me off the register'. What if then the person died and then on the death certificate it stated the person had diabetes? Would the family be denied the insurance? I can see there are going to be problems ahead of some kind of another and not just with insurance.