Fed up

nanabon · Aug 3, 2023

Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

Deleted member 475901 · Aug 3, 2023

Rant away
I'm not sure which type of diabetes you have but I guess the polycythemia won't affect your finger prick readings. Is there any chance you can get a continuous glucose monitor for a while? It won't stop the 'just looked at your result and panicked' response but will help with the conversation after.

You say you are eating a whole food diet - if you are T2 that still might be too many carbs? Are your daily reading done just before then 2 hrs after eating?
I only eat very low-carb bread occasionally now I'm in remission but no rice, pasta, etc. of any colour.

coby · Aug 3, 2023

nanabon said:
Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

@nanabon in your shoes I would either write, or make an appointment with the Practice Manager, and explain how much this attitude grieves you. Ask that a note is added to your files about your condition too. My Practice Manager has been wonderful, so do please try it x

Antje77 · Aug 3, 2023

nanabon said:
I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result,

Why do they keep giving you hba1c tests?
In people with blood cell issues that skew the hba1c, often a fructosamine test is used instead.

nanabon · Aug 3, 2023

TriciaWs said:
Rant away
I'm not sure which type of diabetes you have but I guess the polycythemia won't affect your finger prick readings. Is there any chance you can get a continuous glucose monitor for a while? It won't stop the 'just looked at your result and panicked' response but will help with the conversation after.

You say you are eating a whole food diet - if you are T2 that still might be too many carbs? Are your daily reading done just before then 2 hrs after eating?
I only eat very low-carb bread occasionally now I'm in remission but no rice, pasta, etc. of any colour.

Yeah, very low carb. My carbs come from high fibre veggies, lots of green leafys, and berries if I want something sweet. Stay away from most premade stuff as I fee, its loaded with poison.

AndBreathe · Aug 3, 2023

@nanabon , my GP recently suggested I stop doing my research in the Daily Mail.

I mean, I find him lucky to have lived.

If he cared to ask me the odd question, he might have an inkling about me, but instead would rather cast me into the eejit bucket, just because I want to discuss things in any more detail than, "Yes, thank you, all mighty and genius Doctor".

Never, EVER has there been a more important time for us to advocate for our own health.

JAT1 · Aug 3, 2023

nanabon said:
Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

I totally relate and sympathize. Thanks for the rant - reminds me that I am not alone in my experience of medics - although I am forever grateful to them for saving my life in a number of life-threatening emergencies.

nanabon · Aug 4, 2023

Thanks all for the info. I will ask for a fructosemide test and a cgm. It's also good to I'm not alone

Daphne917 · Aug 4, 2023

AndBreathe said:
@nanabon , my GP recently suggested I stop doing my research in the Daily Mail.

I mean, I find him lucky to have lived.

If he cared to ask me the odd question, he might have an inkling about me, but instead would rather cast me into the eejit bucket, just because I want to discuss things in any more detail than, "Yes, thank you, all mighty and genius Doctor".

Never, EVER has there been a more important time for us to advocate for our own health.

I was told by one of my DNs not to believe everything I read in the Daily Mail when I suggested there may be a link between an increase in my hba1c and the statins she’d prescribed. Her face was a picture when I told her I’d read it from the statin manufacturer’s own website!

JoKalsbeek · Aug 4, 2023

nanabon said:
Thanks all for the info. I will ask for a fructosemide test and a cgm. It's also good to I'm not alone

You're right. I'm a pathological liar, a glutton, and a hopeless closet-drinking alcoholic, according to some medical professionals... A CGM and Fructosemide test as well as a talk with the manager sound like a plan. But if anything goes awry, you're always welcome here for a good rant to people who know exactly where you're coming from!

We hear you, we believe you, we know!

Hugs,
Jo

Outlier · Aug 4, 2023

I'm right there with you! We need your rant as much as you do, otherwise we can think we are the only one who has been dismissed, poo-poo-ed and treated like a 5 year old and made ourselves diabetic through being greedy and indolent.

I am incensed that, twenty or so years ago when I first went to A&E for what turned out to be atrial fib., the Dr. who saw me put "alcoholic" on my notes. At the time I had been teetotal for 40+ years (poverty not inclination). It was only when I paid to access my notes some years ago that I found this out. Apparently it can't be removed. What I actually had is now known as "non-alcoholic fatty liver disease". And my liver is fine now.

Back to diabetes - I am finding some of the new and younger medics are a bit more up to speed and have a better grasp of what goes on with us diabetics, but it's been a long time coming, and has a long way to go yet.

KennyA · Aug 4, 2023

nanabon said:
Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

Better out than in.

One of my NHS stories is that about eight or ten years ago I was asked by my practice how the stopping smoking was going. "Pretty good" I said, "over 30 years now".

Then I was told that wasn't the case, because I'd received "stop smoking" advice only the previous year. I said I hadn't. They said I had, because there it was on my notes (and it was). I said I'd never met the staff member who'd put that on my notes, and could we get her in here right now? No, because she'd...left..... a few months ago.

So, could I have the false entry removed? No. I pointed out that all my life insurance was contingent on me not having smoked for +25 years, and if anyone looked at the notes it made me look like a liar. I pointed out that I would be dead if the issue became relevant and the false entry on the notes would be taken as the only evidence. After a bit of a wrangle, the nurse highlighted the entry, clicked "delete" and what couldn't be done, was done.

ajbod · Aug 4, 2023

Rant away it's very therapeutic. I have the opposite, in having too many white cells. Every year after testing i get the call fishing for symptoms of Leukemia. Every year the answers are the same, negative, until a young locum who rang looked back through my notes, to find they had been this way for over 6 years. Nobody else bothered to look. My opinion of the medical profession outside of hospitals has plummeted since Covid. Thankfully young doctors do seem more open to possible different treatments and ideas, unfortunately it will be many years until they are the ones controlling the medical narrative.

lovinglife · Aug 4, 2023

Snap @ajbod - me too with the white blood cells and Leukaemia thing, very scary the first time but 10 years in now and the GP I’ve been with for 4 years seemed to have grasped it

AndBreathe · Aug 4, 2023

KennyA said:
Better out than in.

One of my NHS stories is that about eight or ten years ago I was asked by my practice how the stopping smoking was going. "Pretty good" I said, "over 30 years now".

Then I was told that wasn't the case, because I'd received "stop smoking" advice only the previous year. I said I hadn't. They said I had, because there it was on my notes (and it was). I said I'd never met the staff member who'd put that on my notes, and could we get her in here right now? No, because she'd...left..... a few months ago.

So, could I have the false entry removed? No. I pointed out that all my life insurance was contingent on me not having smoked for +25 years, and if anyone looked at the notes it made me look like a liar. I pointed out that I would be dead if the issue became relevant and the false entry on the notes would be taken as the only evidence. After a bit of a wrangle, the nurse highlighted the entry, clicked "delete" and what couldn't be done, was done.

On a vaguely similar note, I had breast surgery a few years ago (Bet you always wanted to know that). The resultant histology confirmed my condition to be rare (well, it would be. It was me), but thankfully benign. I read the original pathology report, so I knew what it said.

All tickety boo, until the consultant's letter was added to my record, and a coded entry made. The coded entry, made by some faceless person, stated I had a carcinoma. Nice.

Even though I had read the report, in the hospital, my heart still flipped.

The Practise manager told me it didn't matter. I felt compelled to tell her it was important enough to me that I would not be leaving the room (I had asked for a meeting to discuss it), until my record had been corrected.

There was a bit of a silent stand-off, but it was done.

Didn't matter? Unbelievable.

That is a Practise with a CQC rating of "good. Those requiring improvement must be disaster areas.

KeSeg48559 · Oct 27, 2023

HI @nanabon sorry to hear about your experience, sounds very frustrating and stressful! I definitely agree with those saying you should speak to the practice manager about how you feel - hopefully this will help you and others in the future

lessci · Oct 27, 2023

nanabon said:
Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

Sorry that people can't read and you have to go through the same farce every time. Out of (personal) interest how were you diagnosed and are you prescribed any medication? I've got a permanently (slightly)high Hematocrit level and it's one of the things that my GP is considering, ferritin is "normal"

Richard1984 · Nov 7, 2023

nanabon said:
Hi all,
Hope this is the place I can have a little rant. I have Polycythemia (too many red blood cells) and like anemia, it affects the hba1c. It gives an inflated result, on this occasion, 85. Every time this happens I get a panic call from my surgery saying the diabetic nurse needs to talk to me. Do they bother to look at the rest of my blood results? Nope, and I doubt they would even know what to look for as I was the one who queried it and had it confirmed by both an endocrinologist and a haematologist. But they can't be bothered to read my notes. So once again, I will have to explain it and give my daily readings and talk about my diet (whole food, organic when possible) so they can then suggest in the nicest possible way that I am a liar. The last one asked when I last went to McDonald's and called me a liar when I said 5 years. I am not an idiot, I know how my body works and I am sick to death of being treated like I have some sort of brain impairment (or am 2 years old). Most of these nurses are young enough to be my children and so think that I am a fool. I have a medical background so I guess that makes me challenging but how about collaborating with me on my health care instead of patting me on the head and sending me away with a ticking off. I think I will not have another hba1c as it's always wrong and they can't be asked to look at my records or do a test that might be a bit more accurate - like a gtt. It's so hard to have a conversation with the medical community. I think it's because they do medicine by policy and 1 size fits all. If you're a black swan, you're screwed. Anyway, thanks for reading if you got this far and have a nice day

Richard1984 · Nov 7, 2023

Hi there
sadly many practice nurses in primary care are clueless when it comes to diabetes. The fact you are T1 means you really should be under hospital care. Practice nurses focus on T2 in my area of the UK. Some have a T1 caseload but to do this they must have completed the Warwick Course and have access to the hospital endocrine department with at least a DSN on speed-call. You are correct in that they should review your blood results over a period of time as its trends they are looking for not a rollocking over 1 blood test. The clinical systems have this capacity and can even show results in a graph format if needed. They should share all results with you as the results belong to you and not the practice nurse. Good luck and again accept that control is not a constant and we all have ups and downs so remain positive as it is so difficult and its 24/7.

Michellenz · Mar 16, 2024

Daphne917 said:
I was told by one of my DNs not to believe everything I read in the Daily Mail when I suggested there may be a link between an increase in my hba1c and the statins she’d prescribed. Her face was a picture when I told her I’d read it from the statin manufacturer’s own website!

Excellent!!

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