Feel a little lost

[Emma_369]

Hi All
Brief background for those who don’t know me :
Diagnosed sept 18 Hba1c 62
Dec 18 Hba1c 32
Mar 19 Hba1c 31
When nurse gave me my latest results she said She would class me as diabetic in remission and well done. I found out my doctor had put diabetes cured on my notes and wanted to discuss this as didn’t believe you can cure it and so today had my appointment to basically tell him off.
My doctor was off so got another doctor. Who told me that whilst cured isn’t the right word, neither is remission. He has changed my file to say diabetes resolved which he is adamant is the correct terminology. He said as it stands today, I am not diabetic. I can not call myself diabetic. I will not get called for annual bloods,reviews,eye tests etc. My weight loss and diet has put me with no diabetic readings,symptoms etc so I am entitled to none of the above. He said that in the future should I gain weight, or get symptoms go back. I will always be more susceptible to diabetes but that if I stay as I am I could also go decades without ever having another symptom and be ‘normal’ for the rest of my life and so that is why my medical records will show resolved until a time when symptoms return. When I expressed that this was only the case because of my low carb diet and that if I was to introduce carbs my level would increase he said that is irrelevant. With no medication, and readings at that level I am not diabetic. He also commented that he wouldn’t have diagnosed me diabetic off one blood test but that all doctors are different.
I feel a little lost to be honest. On one hand I think wow - I’ve done what we hope for. I’ve reversed my symptoms. I’m proud of how I’ve tackled it. But On the other I feel a little like the system, rather than checking and making sure I maintain such levels, are happier to say come back when you’re ill. Being diagnosed diabetic changed my life in so many ways. Physically and mentally I’m the healthiest I’ve ever been. I’ve changed entirely as a person and now feel a little odd at not labelling myself diabetic anymore.
No real question to ask on the post just needed to express my emotion with people who would perhaps understand my mixed feelings

 

[Member496333]

You cannot be diagnosed with diabetes by the type of diet you are eating in order to not have it. If you don’t have it then you don’t have it.

I agree with your doctors.

 

[Listlad]

Hi All
Brief background for those who don’t know me :
Diagnosed sept 18 Hba1c 62
Dec 18 Hba1c 32
Mar 19 Hba1c 31
When nurse gave me my latest results she said She would class me as diabetic in remission and well done. I found out my doctor had put diabetes cured on my notes and wanted to discuss this as didn’t believe you can cure it and so today had my appointment to basically tell him off.
My doctor was off so got another doctor. Who told me that whilst cured isn’t the right word, neither is remission. He has changed my file to say diabetes resolved which he is adamant is the correct terminology. He said as it stands today, I am not diabetic. I can not call myself diabetic. I will not get called for annual bloods,reviews,eye tests etc. My weight loss and diet has put me with no diabetic readings,symptoms etc so I am entitled to none of the above. He said that in the future should I gain weight, or get symptoms go back. I will always be more susceptible to diabetes but that if I stay as I am I could also go decades without ever having another symptom and be ‘normal’ for the rest of my life and so that is why my medical records will show resolved until a time when symptoms return. When I expressed that this was only the case because of my low carb diet and that if I was to introduce carbs my level would increase he said that is irrelevant. With no medication, and readings at that level I am not diabetic. He also commented that he wouldn’t have diagnosed me diabetic off one blood test but that all doctors are different.
I feel a little lost to be honest. On one hand I think wow - I’ve done what we hope for. I’ve reversed my symptoms. I’m proud of how I’ve tackled it. But On the other I feel a little like the system, rather than checking and making sure I maintain such levels, are happier to say come back when you’re ill. Being diagnosed diabetic changed my life in so many ways. Physically and mentally I’m the healthiest I’ve ever been. I’ve changed entirely as a person and now feel a little odd at not labelling myself diabetic anymore.
No real question to ask on the post just needed to express my emotion with people who would perhaps understand my mixed feelings

I am not in exactly the same boat, but similar. And I find it depends on who you talk to, which doctor for that matter etc etc as to the opinion given.

I still view myself as being diabetic. The one GP I know at my surgery that seems to have a great understanding of T2 diabetes and LCHF still treats me as if I have it. I am comfortable with that. I have not been able to prove to myself yet that it will not come back if I am slack. So in the meantime I am being quite tight with my carb intake. For now anyway.

 

[Guzzler]

To be left without even a yearly A1c (and I must be clear about this, yearly is too long imo) is in my view negligent. I would advise you to speak to your own GP and discuss these labels of 'resolved' and 'remission' with a view to having a six monthly A1c. If he/she refuses then I would consider getting a home test or paying privately for a lab test. Best wishes and good luck.

 

[Emma_369]

I am not in exactly the same boat, but similar. And I find it depends on who you talk to, which doctor for that matter etc etc as to the opinion given.

I still view myself as being diabetic. The one GP I know at my surgery that seems to have a great understanding of T2 diabetes and LCHF still treats me as if I have it. I am comfortable with that. I have not been able to prove to myself yet that it will not come back if I am slack. So in the meantime I am being quite tight with my carb intake. For now anyway.

I will eat this way forever. Diabetes aside it’s resolved other health issues I’ve had tests and various things done for years with no results and so it works for me on many levels. I would be happier classed as diabetic and still getting my annual reviews and checks. It’s a diagnosis I never wanted but now a label I don’t feel ready to get rid of either

 

[Patrick66]

Hi Emma,

Yeah I get that. I am diabetic but if my HbA1c dropped so low then yes I wouldn't be able to give myself the diabetic label anymore and I am not sure how I would feel about that. I suppose pleased in a way that I had "beaten" it but also wondering what happens next.
I suppose having the label gives a certain sense of security in that you know you are tied to a health service and will be checked up on whilst now you have had the umbilical cord snipped, so to speak, and that...security, for want of a better word, is no longer there.
Personally I think you've done brilliantly with your results and should be proud. I hope you are but yeah, I get it if that's not exactly how you feel.

 

[Emma_369]

To be left without even a yearly A1c (and I must be clear about this, yearly is too long imo) is in my view negligent. I would advise you to speak to your own GP and discuss these labels of 'resolved' and 'remission' with a view to having a six monthly A1c. If he/she refuses then I would consider getting a home test or paying privately for a lab test. Best wishes and good luck.

Well my gp is the one who put ‘cured’ on my notes which it turns out he did in December after only my 1st Hba1c since diagnosis and back then I was on metformin. So I was actually quite relieved to see a different doctor thinking I’d get a different viewpoint. Apparently not though. I think for me I’m going to have to keep periodically checking my BG and the second it starts to rise then I’ll be straight back there. Will probably order my own hab1c kits sometimes too as I know people on here do them privately too. Just feels so strange as both doctors have basically gone against everything I’ve read on this forum

 

[Caeseji]

@Emma_369 Leaving you feeling like that is reprehensible and not even willing to listen to your side is even worse. I know they are excited to get another one off of the epidemic register but not at least giving you the basic checks is negligent and morally corrupt. Once more the NHS looking to save money and compromise on health, I would agree in some ways that you are technically not fully diabetic now due to lifestyle BUT isn't it always better to be prepared? Sending many more hugs than I can give this post though, it's a slight bitter tinge when they don't understand what you've had to do.

 

[britishpub]

He has changed my file to say diabetes resolved which he is adamant is the correct terminology. He said as it stands today, I am not diabetic. I can not call myself diabetic. I will not get called for annual bloods,reviews,eye tests etc.

I was coded as Diabetes Resolved in April 2017. However I still get 6 monthly blood tests, annual reviews and eye screening.

@Bluetit1802 is also coded this way, and I think she too still receives support.

I think you should speak to your own GP and get this clarified.

The GP who coded me resolved was not the original GP who diagnosed me, nor my current GP. When I moved last year and had a new GP she gave me a fructosamine test and an OGTT, both of which indicated that I don't have diabetes, but she still says that I should have annual reviews and tests.

 

[Rachox]

I believe that even when you have diabetes resolved on your record that you are still supposed to have all the annual checks a diabetic gets. I think @Bluetit1802 is in this position, I’m sure she’ll correct me if I’m wrong.
Reversed, remission,well controlled type 2, whatever you want to call it, I compare to coeliac which is controlled unless they eat gluten, or a peanut allergy sufferer who avoids peanuts. Neither are cured, they just keep control by only eating suitable food.

 

[Guzzler]

Well my gp is the one who put ‘cured’ on my notes which it turns out he did in December after only my 1st Hba1c since diagnosis and back then I was on metformin. So I was actually quite relieved to see a different doctor thinking I’d get a different viewpoint. Apparently not though. I think for me I’m going to have to keep periodically checking my BG and the second it starts to rise then I’ll be straight back there. Will probably order my own hab1c kits sometimes too as I know people on here do them privately too. Just feels so strange as both doctors have basically gone against everything I’ve read on this forum

I think @Bluetit1802 also has Resolved on her record (apologies if it is not you Blue) but still has regular tests. This member may have more info on where and how you stand wrt guidelines.

 

[Guzzler]

I believe that even when you have diabetes resolved on your record that you are still supposed to have all the annual checks a diabetic gets. I think @Bluetit1802 is in this position, I’m sure she’ll correct me if I’m wrong.
Reversed, remission,well controlled type 2, whatever you want to call it, I compare to coeliac which is controlled unless they eat gluten, or a peanut allergy sufferer who avoids peanuts. Neither are cured, they just keep control by only eating suitable food.

Snap. Again!

 

[Emma_369]

I was coded as Diabetes Resolved in April 2017. However I still get 6 monthly blood tests, annual reviews and eye screening.
@Bluetit1802 is also coded this way, and I think she too still receives support.

I think you should speak to your own GP and get this clarified.

That’s good to know. I was under the impression that even when resolved/reversed/in remission etc that that would be the case. So yes I think I will try again with my doctor and see what he says

 

[Emma_369]

I believe that even when you have diabetes resolved on your record that you are still supposed to have all the annual checks a diabetic gets. I think @Bluetit1802 is in this position, I’m sure she’ll correct me if I’m wrong.
Reversed, remission,well controlled type 2, whatever you want to call it, I compare to coeliac which is controlled unless they eat gluten, or a peanut allergy sufferer who avoids peanuts. Neither are cured, they just keep control by only eating suitable food.

Thank you - that was my original understanding of it. I am going to arrange another appointment to query this. You begin to doubt yourself when you’re in there and basically being shut down but will persevere until I can at least get some reassurance of checks

 

[britishpub]

That’s good to know.

Hopefully you can get this sorted out.

Whats even better to know of course is that you have halved your A1c in such a short time, which shows you are definately on top and in control of your health.

 

[bulkbiker]

He has changed my file to say diabetes resolved which he is adamant is the correct terminology.

He is 100% wrong.."resolved" should be used only if misdiagnosis has happened according to my GP and area diabetes nurse.
You should be classed as "In Remission" and should get all the annual checks etc.. Also I'm not sure that the timescale is correct I thought that to be "In remission" the 2 non diabetic HbA1c's should be at least 6 months apart.

https://www.berkshirewestccg.nhs.uk/media/1507/diabetes-201cin-remission201d-coding.pdf

might be useful when speaking to another GP..

 

[Emma_369]

You cannot be diagnosed with diabetes by the type of diet you are eating in order to not have it. If you don’t have it then you don’t have it.

I agree with your doctors.

I suppose I see my diet as my medication. Stop taking it and the diabetes will be back because carbs do that to me. So how can that ever be ‘normal’. It is surely just well controlled but ultimately the underlying illness is still there?

 

[PenguinMum]

I strongly disagree with the doctors advice. I was dxd 15 months ago and my HBA1cs have been as follows: at dx Dec 17 53, April 18 41, June 18 37, Dec 18 33. That all sounds great BUT I have problems with retinopathy despite my reductions. My first eye screening showed background retinopathy, last Dec I had a significant bleed behind right eye which I struggled with impaired sight for 6 weeks. Went to my optician in January who did Optimap and referred me urgently to the hospital. Had two scans at the hospital 31 Jan 19 eventually received a letter from Consultant calling me back at the end of April to explore treatment options. None of this sounds like diabetes resolved despite good HBA1c. I dont know what they have put on my file but I intend to turn up every 6 months for glucose/lipids masurement and have my feet, eyes checked etc.

 

[Emma_369]

He is 100% wrong.."resolved" should be used only if misdiagnosis has happened according to my GP and area diabetes nurse.
You should be classed as "In Remission" and should get all the annual checks etc.. Also I'm not sure that the timescale is correct I thought that to be "In remission" the 2 non diabetic HbA1c's should be at least 6 months apart.

https://www.berkshirewestccg.nhs.uk/media/1507/diabetes-201cin-remission201d-coding.pdf

might be useful when speaking to another GP..

Could my diagnosis being off one blood test be clouding that issue as he was very quick to query why I hadn’t had repeats or fasting blood glucose check. Which I obviously don’t have the answer to. I had bloods for another issue and was diagnosed diabetic from them. At the time that shook my world and so checking if the right amount of bloods were done etc didn’t cross my mind and obviously was too late by the time I read on here most people have 2 blood tests to confirm

 

[Bluetit1802]

I was coded as Diabetes Resolved in April 2017. However I still get 6 monthly blood tests, annual reviews and eye screening.
@Bluetit1802 is also coded this way, and I think she too still receives support.

I think you should speak to your own GP and get this clarified.

@Emma_369 Britishpub is quite right. Your doctor was wrong. The coding "diabetes resolved" is only correct following either surgery that leads to "cure", or an initial misdiagnosis. The correct coding, if appropriate, is "in remission". My GP has also coded me "diabetes resolved" and sees no reason to change it. However, I still have 6 monthly blood tests, an annual nurse review, and an annual retinal eye check. The only things I have lost are the annual foot checks and the legal right to VAT exemption from testing equipment.

I did have a link to the various codes to be used if diabetes "disappears" but I can no longer find it. All I could find were some PDF files that I can't copy to here.