TheFraggle
Member
- Relationship to Diabetes
- Type 2
Two years ago I was diagnosed with Type 2 , Hb1c was 144, BG was 25+mmol wasn't unusual early days.
I did max Metformin which was awful, v low carb and massive increase in exercise. A year on and six inches less around the waist Hb1c was in sub 40 so was told "no longer diabetic", no metformin and well done.
Six months on - last week I'd had one of the most stressful periods in my life and I was ill with a viral sore throat, pain in abdomen, massive thirst, huge quantities of water in and out, nausea, headache, aches, confusion and an overwhelming urge to sleep.
After a couple of days I had the random thought to take my BG which was mid 20's so I did a ketone dip test which was maxed. It was expired so I ordered a new one and next day looked on here and gave 111 a ring.
After four hours at the GP waiting for an emergency appointment after 111 got me to the GP, the duty GP did ketones again by dip test, opened up the Diabetes UK guidance on her PC, and sent me to A&E with the choice of taxi or ambulance.
After three hours and 12L of water since the 111 call they took bloods and said they'd confirm within 30 minutes if wasn't DKA but it was four hours later when the nurse remembered to tell me it wasn't but to wait some more.
Another two hours later they got a DSN to have a chat and she nicely but bluntly told me in her view I was Type 1.
The rest is a bit of a blur for that day - at mid 20's BG I'm a zombie but I went home with basal and bolus insulin which has done nothing to stop the abdo pain and very little to address the BG.
Follow up experience has been awful:
Calls are coming from withheld numbers at arbitrary times if they happen. No-one has read the notes.
A first face to face appointment started late and I wasn't told it was an hour, so had to go to look after kids before they could cover carbs and fast insulin and nothing from it has gone into the notes or been followed up
Letter to GP hasn't been received. I'm putting pen needles into a water bottle as I don't have a sharps bin.
One of the DSN's seems to be in a bad place - snappy, disorganized and threatening. Worst call of my life to date in 7 minutes yesterday.
At the start I asked really nicely and calmly if she'd checked the notes from the aborted meeting or the prior calls which covered what she was asking as she was in a hurry and I was feeling awful and got a "Mr Fraggle Calm down or I will have to discontinue your treatment and note you are non-cooperative" in response.
Zero support when I said I was struggling emotionally - "You'll get used to it" was the snappy response. I don't think that's possible if you're feeling this bad.
When I asked what was going on with antibody blood tests because they weren't back the previous day she said they were fine, and then went into a "bloods please" "bloods for yesterday" and just a blunt "bloods please yesterday" when I was struggling to find the figures.
I mentioned that testing 5 times a day using the large lancets provided my fingers are like a dartboard "yes that sounds inconvenient" was the response, then "you will get a GCM very shortly". Which turns out to be 3-6 weeks after the antibody blood test...
... which when she actually checked they didn't do at A&E and so I now need to book my own. It took two minutes to get whether this was hospital / GP / pharmacy confirmed because she just kept saying "3rd floor" to me like I was thick but my GP, Pharmacy and Hospital all have a 3rd floor.
Tracking that down here's a 3 day lead time to even get a response for blood tests and the DSN in a bad place was completely brutal about how long it'll take - 6-8 weeks for result in which time I'm in limbo because in her view it could be a bunch of things.
When I asked what it could be with sudden hair loss, abdo pain and symptoms above she said T1, T2 with major illness ("see GP about that, not our job") or Pancreatic Cancer and she said she had to end the call immediately after that because it was 17:29 and she finished at 17:30.
Shellshocked today and stuck.
I cannot get another appointment booked at the hospital.l - there's nothing available and I have to stick with the nasty DSN
GP reception says i'm under the care of the hospital and they can't do anything until they get a letter which hospital, and that it isn't an emergency if I've been discharged.
I've got a probable UTI and kidney pain today but the first they can do is Next Friday.
DSN ina bad place says it's OK to drive but DVLA want details no-one will send me despite asking on foru times in a week now so I'm stuck not driving. This is impacting caring and I'm the only one in the family who drives.
I'm feeling like giving up right now and wishing I'd not checked.
I did max Metformin which was awful, v low carb and massive increase in exercise. A year on and six inches less around the waist Hb1c was in sub 40 so was told "no longer diabetic", no metformin and well done.
Six months on - last week I'd had one of the most stressful periods in my life and I was ill with a viral sore throat, pain in abdomen, massive thirst, huge quantities of water in and out, nausea, headache, aches, confusion and an overwhelming urge to sleep.
After a couple of days I had the random thought to take my BG which was mid 20's so I did a ketone dip test which was maxed. It was expired so I ordered a new one and next day looked on here and gave 111 a ring.
After four hours at the GP waiting for an emergency appointment after 111 got me to the GP, the duty GP did ketones again by dip test, opened up the Diabetes UK guidance on her PC, and sent me to A&E with the choice of taxi or ambulance.
After three hours and 12L of water since the 111 call they took bloods and said they'd confirm within 30 minutes if wasn't DKA but it was four hours later when the nurse remembered to tell me it wasn't but to wait some more.
Another two hours later they got a DSN to have a chat and she nicely but bluntly told me in her view I was Type 1.
The rest is a bit of a blur for that day - at mid 20's BG I'm a zombie but I went home with basal and bolus insulin which has done nothing to stop the abdo pain and very little to address the BG.
Follow up experience has been awful:
Calls are coming from withheld numbers at arbitrary times if they happen. No-one has read the notes.
A first face to face appointment started late and I wasn't told it was an hour, so had to go to look after kids before they could cover carbs and fast insulin and nothing from it has gone into the notes or been followed up
Letter to GP hasn't been received. I'm putting pen needles into a water bottle as I don't have a sharps bin.
One of the DSN's seems to be in a bad place - snappy, disorganized and threatening. Worst call of my life to date in 7 minutes yesterday.
At the start I asked really nicely and calmly if she'd checked the notes from the aborted meeting or the prior calls which covered what she was asking as she was in a hurry and I was feeling awful and got a "Mr Fraggle Calm down or I will have to discontinue your treatment and note you are non-cooperative" in response.
Zero support when I said I was struggling emotionally - "You'll get used to it" was the snappy response. I don't think that's possible if you're feeling this bad.
When I asked what was going on with antibody blood tests because they weren't back the previous day she said they were fine, and then went into a "bloods please" "bloods for yesterday" and just a blunt "bloods please yesterday" when I was struggling to find the figures.
I mentioned that testing 5 times a day using the large lancets provided my fingers are like a dartboard "yes that sounds inconvenient" was the response, then "you will get a GCM very shortly". Which turns out to be 3-6 weeks after the antibody blood test...
... which when she actually checked they didn't do at A&E and so I now need to book my own. It took two minutes to get whether this was hospital / GP / pharmacy confirmed because she just kept saying "3rd floor" to me like I was thick but my GP, Pharmacy and Hospital all have a 3rd floor.
Tracking that down here's a 3 day lead time to even get a response for blood tests and the DSN in a bad place was completely brutal about how long it'll take - 6-8 weeks for result in which time I'm in limbo because in her view it could be a bunch of things.
When I asked what it could be with sudden hair loss, abdo pain and symptoms above she said T1, T2 with major illness ("see GP about that, not our job") or Pancreatic Cancer and she said she had to end the call immediately after that because it was 17:29 and she finished at 17:30.
Shellshocked today and stuck.
I cannot get another appointment booked at the hospital.l - there's nothing available and I have to stick with the nasty DSN
GP reception says i'm under the care of the hospital and they can't do anything until they get a letter which hospital, and that it isn't an emergency if I've been discharged.
I've got a probable UTI and kidney pain today but the first they can do is Next Friday.
DSN ina bad place says it's OK to drive but DVLA want details no-one will send me despite asking on foru times in a week now so I'm stuck not driving. This is impacting caring and I'm the only one in the family who drives.
I'm feeling like giving up right now and wishing I'd not checked.
