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Am I still diabetic - please help?

D

dolly2410

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I would be so grateful if anyone could help me please? Last year I was diagnosed as Type 2 diabetic, and it scared the hell out of me and has ruled my life ever since.

However, the positives of this were that because I was so scared I stopped smoking, completely changed my diet and took up the gym. Three months after diagnosis I was given another Hba1c which was 5.8.

Just had my next annual Hba1c and despite my best efforts it has gone up to 6.3. But .... the nurse told me this was good news because it meant I was no longer diabetic????

When I asked how this could be she told me that the way for diagnosing diabetes has changed, and apparently I won't now be diabetic until I reach 6.5, and for now I am 'impaired glucose tolerance'. This might have made me happy at one time but .....
- another nurse at the same practice told me that you can never get rid of diabetes and that it is progressive
- as you can see, my Hba1c is higher
- I have lived a year of my life in fear when there was no need
- I lose access to the specialist services which i had over the last year, i.e., retinopathy testing, podiatry etc.
- I am no longer able to have testing strips
- I am no longer entitled to a flu jab
etc., etc., etc .... I'm sure you get the picture

My first instinct which I asked the nurse at the time was if this is a government initiative to wipe loads of people off the diabetic register to make the figures look better - she replied 'absolutely no way'. It has changed she said because the Hba1c is now so accurate, that this is now used to make diagnosis instead of making people drink Lucozade.

I recently had an operation (quite unrelated to this topic) and the first thing I was asked in the hospital was if I was diabetic. When I asked the nurse this week if in future I should say I was diabetic once but no more, or tell people that I am impaired glucose tolerance,but she said that I should not say anything!

Despite this 'good' news I still feel exactly the same as I did before the nurse told me, both mentally and physically. How can I change that because I have been told to?

The nurse showed me my results on the computer and the only two things that were highlighted in red (cause for concern) were my Hba1c (!) and what ever the liver count is made in (?) mine said 60 and she said it should not be over 30. This alarmed me but she said the Doctor had seen it and was OK with it. There was no previous reading to compare it with but this also really scared me. Two years ago I had my gallbladder out and was told then after a scan that I had a fatty liver (no one seemed concerned), I have maybe a dozen glasses of alcohol a year and have never been a heavy drinker. I take a very low dose of a tablet to help my blood pressure (been on this several years) but no other medication.

So, despite being told I no longer have diabetes, I am more scared and confused than I have ever been and feel that I am being used as a statistic (vehemently denied by nurse) and not sure what to think and I just wondered has anyone else faced this 'new diagnosis' recently, or become un-diabetic, or can offer me a clearer explanation so that I can try and understand. I would love to hear from you. :problem: :cry: :( :o :shock: :? :? :? :? :?
 
Hi

I would seriously question this nurse - I am afraid that there is currently no cure for diabetes and I feel that to tell someone that they are no longer diabetic and should not say that they have ever been is not only unprofessional but also reckless. Diabetes can be treated and the symptoms can be alleviated, but it is a disease that is caused by your pancreas not being able to function properly and this is a lifetime condition at present.

Please keep looking at this forum - you will get good, relevant advise here which has helped me personally no end.

It really concerned me that a trained medical professional could make such a statement - is there something more sinister going on here that reflects current government plans for our future?
 
OMG

make an appointment with your doctor to discus your concerns.

Yes you are still diabetic and you still need monitoring. You are a well controlled diabetic NOT and ex-diabetic, currently that state does not exist.

However you have brought your numbers down - could change in the future if you are not as in control as you are now. Your BG numbers will then shoot up and without anyone monitoring you will lead to problems

While you're at it discuss your liver results, ask the doctor why they arent concerned. (I'm not saying they should be I've no idea what the numbers mean but double the norm is certainly worth a discussion)

Good luck and well done on the numbers - btw my HBA1c is 5.4% I'm still diabetic, I still have all my checks.

Mary x
 
Hi

I can't agree with Mary more. If you were previously correctly diagnosed as having diabetes then it is likely that the changes that you have made in your diet and lifestyle have brought you the HbA1c that you have. In other words, you have been and are treating your diabetes by diet and lifestyle changes and it is working although not quite as well as it was. That does not mean that you no longer have diabetes but that it is under control.

Regards

Doug
 
Re: Am I still diabetic - please help? on

Hi Dolly, :)

Well done on great results.

It might be wise to stay in what I would call "diabetic labeled", only because this should permit you to have necessary checks to ensure that you have continuous control with your health.

As your aware NHS staff are not fully advised or trained in dealing with Diabetes Type 2.

I have come to the collusion that every nurse has a different idea regarding Diabetes, hence random training.

Put your foot down and you decide what you prefer to be, however you must keep up your great control.

If you are not happy with you GP you can request a expert consultant in this field of which your doctor should be happy to arrange for you.


Roy. :)
 
Sounds to me like the nurse is talking rubbish. If she is the practice nurse, then she is probably the one that does the asthma clinic, baby jabs etc, not a specialist who knows lots about diabetes. Just because a HbA1c of 7% is used to diagnose diabetes, and yours is lower than that, it doesn't mean that you do not have diabetes. I'm sure if you ate lots of carbs over a 3 month period your HbA1c would soon go up above 7%.

I would talk to your GP about this. I do not consult the nurse at my GP surgery for anything diabetes related, I have no confidence in what they say.
 
Your nurse is wrong. You are now a well controlled diabetic which is brilliant so well done :clap: :clap: :clap: The trouble is in many cases the advice given by dsn's and gp's in this country is so poor and their understanding of T2 so weak that most T2's never get the chance to be well controlled. When they come across a person such as yourself it confuses them and they make ridiculous statements.

The only possible way that you are not diabetic is if you were mis-diagnosed diabetic in the first place. If in reality you were at a pre-diabetic stage and therefore hadn't damaged your insulin production ability a great deal then by adopting regime of reducing your sugar and carbs and losing excess weight (if you need to) you can effectively come back from the brink. Even in those cases if you were then to revert to your old lifestyle you would soon be walking back down the road to T2 again.

If you want to see if you are in that bracket then I would ask your gp to confirm you are no longer diabetic by doing a glucose tolerance test. If you have been following a low sugar, low carb regime since diagnosis you will need to consume greater than 150g of carbs for the three days prior to test or else the test will not be accurate.
 
I have held my A1c to the low 5 s since diagnosis 10 years ago, two years ago I went on Metformin, only 500mg a day but it helps.

I was 13 on diagnosis, and despite my good control I am still T2, I also know that at some time in the furure I will need some sort of intervention to keep me "right".

There has never been any suggestion that I am not T2 any more, I am simply a well controlled T2, diet, excercise and some medication has bought my A1c down to near "normal" levels but if I eat a jam oenut or even a bowl of porridge my levels will shoot up, if I ate like that all the time I would be quickly back to A1c levels of 13.

So as everyone has said, you can't be cured, but you can keep a tight lid on things and enjoy a normal life, and many more years yet :D

H
 
Oh my word Dolly, what a situation to be in. My last HbA1c was 4.9% I'm due another soon, but I am still diabetic. I still get strips prescribed and it's not long ago I had my annual podiatry and retinopathy screen. Once diagnosed as diabetic, we are always diabetic. It's a condition, that at this time has no cure, and your nurse was very wrong to tell you otherwise.

As has been said before, I think sometimes HCP come across well controlled diabetics and they don't know what to make of us, because the NHS diet that we are all meant to follow, does make the progression of diabetes inevitable. So many of us here on this forum can prove it doesn't have to be that way, and you're one of them. Your brilliant results have put the nurse into a tail spin, and she has no idea what to do with you, so palm you of as non diabetic.

I would go and see your GP, bypass the nurse, and stay on the forum and we will support you. If there is anything your not sure of, just ask, there is always someone around who will be able to help.

Try not to worry too much, and well done on showing your nurse what is possible.
 
I can't thank you all enough for your kind comments and advice. I am in such turmoil that I feel like I don't know which way to turn, and your words have helped a great deal. Thank you all again for helping me.
 
Hey all!

I agree with everything that has been said on here in response to Dolly. However, I think the point that has been missed is that the nurse has now effectively undiagnosed her and she will no longer be entiltled to the diabetic checks unless she can get diagnosed again.

I have no idea why they have changed the way they diagnose diabetes, but I was told at my DSN hospital appointment last week that they no longer use the GTT but rely instead on the HbA1c. I pointed out that an HbA1c would not have diagnosed my (LADA) diabetes initially, but the GTT clearly did as my my reaction to the glucose showed beyond doubt that I cannot metabolise glucose properly - at that time my HbA1c was still in the 5s. Like Defren/Xyzzy, I think Dolly needs to go back and insist on a GTT, but given they no longer use it to diagnose diabetes, I don't know how far that insistence will get.

The really worrying thing here is that we could start to see many of our well-controlled Type 2s undiagnosed and losing access to their care program, as well as LADAs being left undiagnosed for a damagingly long time.

Smidge
 
Dolly, print out your original post on this thread and take that with you when you go to see your GP.

What concerns me most is that you seem to be saying that the nurse has told you that you no longer need to see the podiatrist, or have your retinopathy scan, etc etc.

You have been registered as Type 2 diabetic, you will always be Type 2 diabetic no matter how well controlled you are! There is, however, a box on that form to tick if no longer diabetic - or something similar. Check that you are still registered. You need your regular checks and blood tests.

If they tested me now I would not be diagnosed as diabetic - but I am, no matter how well controlled, and a couple of days off the low-carb wagon shows that very clearly.

Ask your GP what the heck is going on!

Viv 8)
 
My HbA1c was 7.5 in March and is now down to 5.5 at my latest review this month.
I have lost 2 stones in weight and have reduced my BP and Cholesterol as well.
My diabetes nurse is also a Nurse Practitioner and is debating my Metformin dose at the next review if my HbA1c stays the same or reduces further. Although I no longer receive test strips/lancettes on prescription I buy them on ebay as I still test daily so as I can see where I am going wrong or right. My nurse does not agree with the NHS decision to stop prescribing the test equipment but is tied by practice rules.
I asked her about the 'cured of my diabetes' theories and she said exactly what everybody is saying on here, THERE IS NO CURE, you are a diabetic now for life (or until they find a cure) so I have simply accepted it and have changed my lifestyle accordingly. I still have a few treats but now it is a once a month trip to the Chinese Buffet and I avoid the dishes that are laden in that sweet stuff and normally when I test the next day I am still down at sub 6 which soon returns to sub 5.5 within 2 days.
 
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