Feel a little lost

[bulkbiker]

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

That may be the reason as most of us have 2 HbA1c's taken usually a couple of weeks apart to confirm the diagnosis.
As it is quite unexpected that people can turn their figures around, as a lot of us here have, because doctors think that T2 is a "chronic progressive" disease then that may be the reason for your recoding but both you and I think that they are simply wrong. In your shoes I'd be fighting hard for the "remission" label so you get the annual check ups etc..
Either they think they misdiagnosed you (which is a bad reflection on them) or they think you have achieved a medical "miracle" by turning T2 around..

 

[Emma_369]

@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.

Thanks for this! I’m going to go back whenever I can get an appointment and moan some more. So frustrating that something that should be so simple and so important for doctors to get right seems such hard work! Once again what would I do without this forum!!

 

[Bluetit1802]

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

The fasting blood glucose test is no longer done at my surgery, and probably many others. As far as I am aware, the HbA1c is only normally done twice in the space of a couple of weeks if the first test is fairly borderline, but this may vary from one surgery to another.

Can I ask if, at the time you had your first HbA1c, you were taking steroids and then stopped these before your second test?

 

[Bluetit1802]

Thanks for this! I’m going to go back whenever I can get an appointment and moan some more. So frustrating that something that should be so simple and so important for doctors to get right seems such hard work! Once again what would I do without this forum!!

Try finding the relevant documents on Google so you have some evidence. I'm sorry I can't find them for you.

 

[Member496333]

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?

I disagree. Carbohydrate intolerance is still there, but that is not diabetes. To frame it another way, if you now walked into into your surgery as a first time patient and had a blood test, would you be diagnosed diabetic? No? Then you don’t have diabetes.

I do of course understand the desire for yearly testing, and I admit I am unsure of the standard practice in this regard, but honestly I think you have little cause for concern. You already know that you will not change your lifestyle, and if you have/get a glucose meter and test your fasting glucose occasionally then you will know if you are ok. Additionally you can get private HbA1c tests done very inexpensively. I don’t mean to sound dismissive, it’s just that I think you’re putting a negative slant on a positive situation. You have your head screwed on and don’t need an arbitrary HbA1c test to tell you what you’ll really already know.

Only in my humble opinion of course.

 

[Emma_369]

The fasting blood glucose test is no longer done at my surgery, and probably many others. As far as I am aware, the HbA1c is only normally done twice in the space of a couple of weeks if the first test is fairly borderline, but this may vary from one surgery to another.

Can I ask if, at the time you had your first HbA1c, you were taking steroids and then stopped these before your second test?

My first diagnosis bloods were taken mid September. I was taking some prescribed tablets for chronic heartburn and had been since mid August - would have to check when I get home the name of them. I don’t believe they were a steroid but in honesty I don’t know. That’s the only medication I was on. I stopped taking these shortly after diagnosis as the change in diet resolved the issue more than the tablets ever did.
Edited to add -just realised I’d also within 4 weeks of the diagnostic bloods been on strong painkillers and antibiotics - this was mid August for a bad gall bladder infection which saw me in hospital and started off all these tests

 

[Rachox]

Try finding the relevant documents on Google so you have some evidence. I'm sorry I can't find them for you.

Is it this one, that @bulkbiker linked to earlier in his thread:
https://www.berkshirewestccg.nhs.uk/media/1507/diabetes-201cin-remission201d-coding.pdf

 

[Emma_369]

I disagree. Carbohydrate intolerance is still there, but that is not diabetes. To frame it another way, if you now walked into into your surgery as a first time patient and had a blood test, would you be diagnosed diabetic? No? Then you don’t have diabetes.

I do of course understand the desire for yearly testing, and I admit I am unsure of the standard practice in this regard, but honestly I think you have little cause for concern. You already know that you will not change your lifestyle, and if you have/get a glucose meter and test your fasting glucose occasionally then you will know if you are ok. Additionally you can get private HbA1c tests done very inexpensively. I don’t mean to sound dismissive, it’s just that I think you’re putting a negative slant on a positive situation. You have your head screwed on and don’t need an arbitrary HbA1c test to tell you what you’ll really already know.

Only in my humble opinion of course.

I do see that side. My family are very much of that opinion. Well done me. I’m amazing I do have a monitor so will continue to see where my levels are at and always will. And of course i do know why would I want a label of an illness. I’m young. I want a label of perfectly healthy. Just feels a little bit Like a slightly tarnished version of it. In 6 months I’ve had to get my head round being told I’m diabetic to now being told I’m not. Just feels odd I guess

 

[Listlad]

The last words my GP said to me after congratulating me for my achievement was to advise me to have an HbA1c check every 3 months. I have since discovered this is not normal. So in approximately 2 months from now I am going back to him to check with him directly. I don’t think he made a mistake when he advised me on that and if he says that’s what I should or can do then I am happy with that.

 

[Member496333]

I do see that side. My family are very much of that opinion. Well done me. I’m amazing I do have a monitor so will continue to see where my levels are at and always will. And of course i do know why would I want a label of an illness. I’m young. I want a label of perfectly healthy. Just feels a little bit Like a slightly tarnished version of it. In 6 months I’ve had to get my head round being told I’m diabetic to now being told I’m not. Just feels odd I guess

Sure thing, and I’m not judging your feelings. I guess just trying to spin some positivity. Others have offered great practical advice regarding your doctor, and I’m sure no matter what happens you’ll work around it all in time.

Above all else, congratulations on beating it. Stick to the current plan and it won’t come back. Be happy

 

[Bluetit1802]

Is it this one, that @bulkbiker linked to earlier in his thread:
https://www.berkshirewestccg.nhs.uk/media/1507/diabetes-201cin-remission201d-coding.pdf

Yes, thank you. That is one of them. There is also a GP Handbook 2017/2018 that describes the problem but again I have no url, just the pdf file.

 

[Listlad]

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?

I see my diet as a form of medication.

 

[Resurgam]

That might explain why my doctor is sulking - I have had only one Hba1c test which showed diabetic levels - though I am pretty confident that any done earlier in the last decade would have shown similar results.
I was expecting a phone call about my 'annual health check' - the one I have not had since I was 40. (I am 68 in a few days) but that has not materialized - though there is still time as the blood test results come back so quickly these days. Maybe I am on the 'ignore' list. I know there is NFA on my file - I thought that it was no further action, once I was no longer diabetic, in HBa1c terms - maybe it means something else, like no future appointments.

 

[Member496333]

@Emma_369 have you considered a fasting insulin test? They’re inexpensive and will give you great peace of mind with regards to your metabolic health. To be honest if used in a HOMA-IR context it will tell you a sight more than any test your doctor will ever perform. I recently had this done through Medichecks. You can do it via their finger prick testing kit and simply pop the vial in the post. Everything you need comes in the kit. I was very impressed with the service and even more impressed with my test results

I’m now a firm believer in private lab testing for anything I’m keen to find out. Just a thought, and something for you to consider in light of your current situation.

 

[Listlad]

That might explain why my doctor is sulking - I have had only one Hba1c test which showed diabetic levels - though I am pretty confident that any done earlier in the last decade would have shown similar results.
I was expecting a phone call about my 'annual health check' - the one I have not had since I was 40. (I am 68 in a few days) but that has not materialized - though there is still time as the blood test results come back so quickly these days. Maybe I am on the 'ignore' list. I know there is NFA on my file - I thought that it was no further action, once I was no longer diabetic, in HBa1c terms - maybe it means something else, like no future appointments.

Same for me. One test showing diabetic levels.

In my case I phoned them for tests this year. They didn’t contact me. More like if one doesn’t ask one doesn’t get.

 

[DCUKMod]

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

Emma - Have you asked your surgery what checks will be available to you in the future?

My T2 is marked as "resolved" and I have an annual A1c (and a decent broad blood panel) test and when I got home last night, there wa a letter waiting for me, asking me to book my retinpathy screening.

 

[Emma_369]

Emma - Have you asked your surgery what checks will be available to you in the future?

My T2 is marked as "resolved" and I have an annual A1c (and a decent broad blood panel) test and when I got home last night, there wa a letter waiting for me, asking me to book my retinpathy screening.

Well the doctor I saw today said I wouldn’t get any moving forward as I’m not diabetic and to return to the surgery if In the future I had any symptoms of diabetes or gained my weight back. I tried to argue the point that surely checks would be needed but he said not as I no longer class as diabetic. He said losing weight changes your metabolism and that my body functions fine now. I explained that’s due to low carb, that I test and that doing so shows that carbs still make me rise but he said it’s irrelevant of the how or why. My levels are non diabetic and he emphasised that he wouldn’t have diagnosed me as such in the beginning off one test. But I’ve left a message asking for my usual doctor (who also isn’t the best and was the one who diagnosed and prescribed medication straight off one lot of bloods) to call me to discuss. I’m hopeful of a phone call tomorrow. I would just feel better knowing I’m not dropped from the system for having good control which is what this doctor was basically telling me.
Either way I will continue to test myself and if I see a rise in levels in the future that I can honestly say aren’t due to carb creep then I will be straight back there

 

[Listlad]

The fasting blood glucose test is no longer done at my surgery, and probably many others. As far as I am aware, the HbA1c is only normally done twice in the space of a couple of weeks if the first test is fairly borderline, but this may vary from one surgery to another.

Can I ask if, at the time you had your first HbA1c, you were taking steroids and then stopped these before your second test?

When did they stop yours? I had one done in Feb last year.

Strangely I am going for a Fasting Blood Glucose Test tomorrow at my local surgery. Am just about to stop eating as of 9pm.

 

[Listlad]

Well the doctor I saw today said I wouldn’t get any moving forward as I’m not diabetic and to return to the surgery if In the future I had any symptoms of diabetes or gained my weight back. I tried to argue the point that surely checks would be needed but he said not as I no longer class as diabetic. He said losing weight changes your metabolism and that my body functions fine now. I explained that’s due to low carb, that I test and that doing so shows that carbs still make me rise but he said it’s irrelevant of the how or why. My levels are non diabetic and he emphasised that he wouldn’t have diagnosed me as such in the beginning off one test. But I’ve left a message asking for my usual doctor (who also isn’t the best and was the one who diagnosed and prescribed medication straight off one lot of bloods) to call me to discuss. I’m hopeful of a phone call tomorrow. I would just feel better knowing I’m not dropped from the system for having good control which is what this doctor was basically telling me.
Either way I will continue to test myself and if I see a rise in levels in the future that I can honestly say aren’t due to carb creep then I will be straight back there

I think cherry picking the best doc helps. That is what I am doing.

 

[Danny61]

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

Firstly congratulations. That is a fantastic achievement, of which you should be amazingly proud of yourself. I have gone from an 88 reading to 42 in 6 months. I hope next time, in June, I will be "Clear" Cured" "In remission" ar any other combination of words that ultimately mean I do not have Diabetes. At that point, fingers crossed, I will be more than happy to lose any or all of the tags I have been labelled with since my diagnosis. However what I will do is insist on at least an annual check up with my Dr. And I will make sure it happens. Don't be driven by your Dr, be driven by what is best for you, and fight for that right. Dr's tend, I have found, to get lost in the numbers game, and forget to treat their patients like individuals. Your job is to remind them that you are very much an individual, with needs, with expectations and with rights. Go for it, and good luck Danny