Apologies for the long post here.
Allow me to share my 1st diabetes consultant experience with you.
I've been waiting to see a consultant since I was diagnosed in September last year and got a phone call offering me an appointment after someone cancelled.
Went in today.
If there are any HCPs reading this forum, please make sure you listen to what your patients are telling you. Don't make assumptions about their care. Don't arrogantly lecture them on what they need to do. These patients are not your property to order about. And for the love of ALL that is good in the world, never EVER attempt to show off in front of a trainee doctor. My pet peeve is being treated like an idiot or having my opinion casually dismissed in front of others. Right. Here we go...
The first thing I didn't appreciate was being told they were moving me to Libre 2 at some unspecified point in the near future and that because I "won't use a smartphone" that I would have to phone the manufacturer for a new device because the current device would stop working. Apparently I was going to find out that I been swapped, only when my one of my future prescription renewals arrived with a different device at which point my reader would stop working without notice. That isn't good enough. I asked them to keep me on Libre 1 which they did but they should have ASKED me what I wanted first. Now I'm a bit nervous about them forgetting and pushing it through anyway so I'll be sticking in my prescription renewals a week earlier to give me notice just in case.
I didn't appreciate comments where they assumed I am either "not techy" or "techphobic". I am neither. I used to write software for the first generation of mobile phones. I just want my phone to be a phone. Apparently that is considered "weird". To be honest I was probably being a bit touchy at this point.
Next. The consultant has brought up my Libreview data and has it in front of him. In a casual manner, he tells me that because my antibody tests are negative that I'm almost certainly type 2 and that he will be taking me off insulin. This is partly directed at the trainee doctor in the corner. At this point I'm trying not to panic. I now have to waste time explaining to him all the things which are on my medical record that he can see in front of him but which he has overlooked and I'm having to advocate for my own health when that is HIS job.
Here are the arguments I made against his diagnosis.
Firstly, my DN has diagnosed me. Metformin didn't work at all but a tiny amount of insulin immediately worked on my blood glucose levels (a little too well, hence the neuropathy).
Secondly, my GP (who is a diabetes specialist) has backed that diagnosis.
Thirdly, antibody tests are notoriously inaccurate in 50 year old people so should he be diagnosing from that?
Fourthly, I lost 5 stone in weight. Is that normal in Type 2?
Fifthly, there is no family history of Type 2 at all.
Sixthly, I have never been obese (I know this isn't diagnostic but it's one more factor against it being Type 2).
Seventhly, I had a virus I didn't recover from and this is suspected to be one potential cause of Type 1 in adults.
Finally, I am showing no signs of insulin resistance at all. In fact I am using very little insulin to effect quite dramatic corrections in blood glucose levels. My ratios are 1:10, I'd expect to be using more than that as a Type 2.
Only after listing those 8 factors, did he concede that it sounded like I was definitely Type 1 but I hammered home my point because he had riled the hell out of me and I told him I would not want to be taken off insulin regardless of diagnosis because it was clearly working.
We then moved to my Libreview data which shows me as 93% in range with occasional highs at breakfast and a few hypos. He asks about the hypos, my ratios (again - I've already told him just 2 minutes ago) etc. I tell him the hypos are almost always following a chocolate night where I've used 1:10 ratio of bolus rather than 1:20 (choccy is a bit funny with me and I need much less insulin) and I tend to mix it with cake because I'm a greedy ******* which can cause a bit of hit and miss with dosage. I tell him I need to tweak my bolus dosage and preferably stop pigging out so much on cake. He dismisses this off-hand and says "No." He calls over the trainee to show her the screen. "Your hypos are happening at 4am, more than 5 hours after your bolus. You have no bolus in your system at that point. Reduce your basal." My patience wears out at this point and I'm blunt to the point of being rude. I responded "No. I'm not doing that." He asks me why and I ask him to look at the screen, which he does. I ask him to look at the blood glucose peak preceeding the hypo trough and to tell me the duration between that peak and the onset of the hypo. He pauses for a moment and then suddenly he's a bit quieter. It's 2 hours. So I said "That peak is when I took my bolus and chocolate and the hypo is 2 hours afterwards. I need to tweak my bolus and NOT my basal". His sheepish response is "Oh. I assumed you'd had the chocolate and bolus at 10pm or 11pm". So he just ignored the 2am peak FFS.
Now I will admit to being a bit of a stroppy ******* sometimes and maybe I've over-reacted a bit but at least I got my point heard and accepted.
He then made a rambling speech about how he could do a C-peptide test but that it was pointless to do it before the 3 year mark because it would be unreliable and then within 2 minutes had changed his mind and had taken me through to the nurse to have blood taken to run that test anyway. Honestly, at this point I was just glad to get away.
What a day. I can only feel sorry for the many people out there who don't feel they can challenge a medical doctor and end up in trouble because of it.
When it comes to my health, give me a stroppy attitude any time.
Anyway, feeling better now despite the wasted 2 hours of my life that I won't get back. I got back in the car, came across all "Braveheart" and yelled "They can take away my time but they will NEVER take away my INSULIN!!!" I might have made the old lady in the next car jump a little. 🙂
Allow me to share my 1st diabetes consultant experience with you.
I've been waiting to see a consultant since I was diagnosed in September last year and got a phone call offering me an appointment after someone cancelled.
Went in today.
If there are any HCPs reading this forum, please make sure you listen to what your patients are telling you. Don't make assumptions about their care. Don't arrogantly lecture them on what they need to do. These patients are not your property to order about. And for the love of ALL that is good in the world, never EVER attempt to show off in front of a trainee doctor. My pet peeve is being treated like an idiot or having my opinion casually dismissed in front of others. Right. Here we go...
The first thing I didn't appreciate was being told they were moving me to Libre 2 at some unspecified point in the near future and that because I "won't use a smartphone" that I would have to phone the manufacturer for a new device because the current device would stop working. Apparently I was going to find out that I been swapped, only when my one of my future prescription renewals arrived with a different device at which point my reader would stop working without notice. That isn't good enough. I asked them to keep me on Libre 1 which they did but they should have ASKED me what I wanted first. Now I'm a bit nervous about them forgetting and pushing it through anyway so I'll be sticking in my prescription renewals a week earlier to give me notice just in case.
I didn't appreciate comments where they assumed I am either "not techy" or "techphobic". I am neither. I used to write software for the first generation of mobile phones. I just want my phone to be a phone. Apparently that is considered "weird". To be honest I was probably being a bit touchy at this point.
Next. The consultant has brought up my Libreview data and has it in front of him. In a casual manner, he tells me that because my antibody tests are negative that I'm almost certainly type 2 and that he will be taking me off insulin. This is partly directed at the trainee doctor in the corner. At this point I'm trying not to panic. I now have to waste time explaining to him all the things which are on my medical record that he can see in front of him but which he has overlooked and I'm having to advocate for my own health when that is HIS job.
Here are the arguments I made against his diagnosis.
Firstly, my DN has diagnosed me. Metformin didn't work at all but a tiny amount of insulin immediately worked on my blood glucose levels (a little too well, hence the neuropathy).
Secondly, my GP (who is a diabetes specialist) has backed that diagnosis.
Thirdly, antibody tests are notoriously inaccurate in 50 year old people so should he be diagnosing from that?
Fourthly, I lost 5 stone in weight. Is that normal in Type 2?
Fifthly, there is no family history of Type 2 at all.
Sixthly, I have never been obese (I know this isn't diagnostic but it's one more factor against it being Type 2).
Seventhly, I had a virus I didn't recover from and this is suspected to be one potential cause of Type 1 in adults.
Finally, I am showing no signs of insulin resistance at all. In fact I am using very little insulin to effect quite dramatic corrections in blood glucose levels. My ratios are 1:10, I'd expect to be using more than that as a Type 2.
Only after listing those 8 factors, did he concede that it sounded like I was definitely Type 1 but I hammered home my point because he had riled the hell out of me and I told him I would not want to be taken off insulin regardless of diagnosis because it was clearly working.
We then moved to my Libreview data which shows me as 93% in range with occasional highs at breakfast and a few hypos. He asks about the hypos, my ratios (again - I've already told him just 2 minutes ago) etc. I tell him the hypos are almost always following a chocolate night where I've used 1:10 ratio of bolus rather than 1:20 (choccy is a bit funny with me and I need much less insulin) and I tend to mix it with cake because I'm a greedy ******* which can cause a bit of hit and miss with dosage. I tell him I need to tweak my bolus dosage and preferably stop pigging out so much on cake. He dismisses this off-hand and says "No." He calls over the trainee to show her the screen. "Your hypos are happening at 4am, more than 5 hours after your bolus. You have no bolus in your system at that point. Reduce your basal." My patience wears out at this point and I'm blunt to the point of being rude. I responded "No. I'm not doing that." He asks me why and I ask him to look at the screen, which he does. I ask him to look at the blood glucose peak preceeding the hypo trough and to tell me the duration between that peak and the onset of the hypo. He pauses for a moment and then suddenly he's a bit quieter. It's 2 hours. So I said "That peak is when I took my bolus and chocolate and the hypo is 2 hours afterwards. I need to tweak my bolus and NOT my basal". His sheepish response is "Oh. I assumed you'd had the chocolate and bolus at 10pm or 11pm". So he just ignored the 2am peak FFS.
Now I will admit to being a bit of a stroppy ******* sometimes and maybe I've over-reacted a bit but at least I got my point heard and accepted.
He then made a rambling speech about how he could do a C-peptide test but that it was pointless to do it before the 3 year mark because it would be unreliable and then within 2 minutes had changed his mind and had taken me through to the nurse to have blood taken to run that test anyway. Honestly, at this point I was just glad to get away.
What a day. I can only feel sorry for the many people out there who don't feel they can challenge a medical doctor and end up in trouble because of it.
When it comes to my health, give me a stroppy attitude any time.
Anyway, feeling better now despite the wasted 2 hours of my life that I won't get back. I got back in the car, came across all "Braveheart" and yelled "They can take away my time but they will NEVER take away my INSULIN!!!" I might have made the old lady in the next car jump a little. 🙂
