My diabetes journey
I apologise in advance, but this is going to be a long one – I thought I was doing really well, but a couple of conversations recently have made me very confused and now I have no idea what’s going on and I was hoping that hearing other peoples’ experiences might be able to point me in the right direction. I will keep this as brief as possible, but it’s been an action-packed year!
So, a bit of backstory – I’m 53, female and hadn’t been to a doctor for years – hadn’t had anything that made me think it necessary. Then my Mum (who had been 100% fit and independent, looking after the garden and house single handedly as well as walking her dog twice a day at the age of 83) was taken suddenly ill at the beginning of November last year. She fought with everything she’d got, but it wasn’t enough and she died at the beginning of December. January – March was spent dealing with her funeral and interring her ashes and her horrendous sister. I wasn’t very well in February – felt fluey and completely lost my appetite. I got over that, but still didn’t feel well and was losing weight. I put this down to the grief and stress of losing Mum. But then it all came to a head at the end of March when I collapsed at home.
I was taken into hospital where I was diagnosed with diabetes (don’t know the type – that will be explained later), in DKA, a serious kidney infection and sepsis. I then spent 6 weeks in hospital, 3 in ITU and 3 on the normal ward while they got my kidney (mainly) under control.
While in hospital, I saw the diabetic nurse 2 or 3 times who just told me when to check for ketones and to tell the DVLA that I was on insulin. They also said they’d sent a blood sample to Exeter to find out if I was type 1 or 2 but it would take ages to get the results back. (Literally all I was told). They wouldn’t even come and see me when I was discharged as there was potentially COVID on my ward. When I was discharged, I was insulin dependent – regime was 30 units Abasaglar mornings and 7 units Novorapid with each meal. I had my hbA1C tested once in hospital when I was fist admitted and it was 118 – there’s no other record of it on my notes that I can currently access, although I have requested them all for the time I was in hospital.
I was discharged on the 3rd May and I was still very weak from the sepsis and kidney infection at this point – still on long term antibiotics and no appetite at all (I lost 20kg from December – June). Next interaction I had with the diabetic unit was in June when the diabetic dietitian rang me. She was really useful and it was at this point I discovered that I needed to base the Novo injections on the amount of carbs I had per meal, so if we had a carb free meal then I didn’t need to take any. At this point, still on same doses of insulin and blood sugars averaging about 8 – 9.
I also made contact with my GP, who turns out to be a specialist in diabetes and has been the reason I’m still relatively sane. He ordered blood tests. My hba1c was now 43 – mostly, I suspect, because I’d hardly eaten anything in hospital (the food was beyond disgusting) and had started to really cut down on carbs and just eat more healthily. He reduced my Abasaglar to 26 units on a morning and told me to experiment with the Novo depending on the carbs in my meals. Blood sugars were now high 7 – high 8s depending on time of day. I get a letter from the diabetic unit cancelling the clinic appointment I had in September and moving it to December (!).
Follow up with GP in September – blood sugars now average low 7s. Blood pressure normal after stopping steroids. Hba1c down to 41. GP reduces Abasaglar to 10 units in the morning and keeps novorapid the same. Makes first mention of potentially transitioning me from insulin to tablets.
End October – blood sugar still average low 7s. Reduced Abasaglar to 5 units am. Novorapid to 4 units per meal and to add in metformin 500mg morning and evening. One horrendous day of side effects from the Metformin, but then settles down. I had asked my GP whether I needed to keep the appointment t the diabetic clinic as they hadn’t been in touch. He advised that I did, but should be asked to be discharged to GP care.
November – hba1c down to 39. Blood sugars mid – high 6s. GP stops the insulin, adds in 5m Linagliptin on a morning. Tells me to keep monitoring blood sugars and go back in 10 days. Blood sugars remain stable at mid-high 6s.
I then get a call out of the blue from the diabetic department! Now, bear in mind, so far as they’re aware, I’ve had no conversations about my diabetes since the end of April. She says they’ve had a cancellation for that Friday’s clinic and would I be able to come then instead of 20th December. So, I said yes, I could. She then asked in the most patronising tone if I’d been able to monitor my blood sugar (!!). So, I told her that yes, it was averaging 6 – 7, I was off insulin and my hba1c was 39. There was an immensely long pause and she said “How have you managed that?” So, I told her it was with the support of my GP, eating healthily and taking more exercise. So, she said that she would speak to the consultant, but would recommend that I be discharged to GP care and not to worry about the clinic appointment. The consultant (with whom I had never spoken, but had an appointment in mid-January) might still want to see me. Fine.
Went to see the GP next day who told me all was good and that I didn’t need to test my blood sugar any more unless I wanted to. He was pleased about me being discharged from the hospital, so, so far as I was concerned, all was going well in my world for the first time in months.
Then I get another call from the diabetic unit. They are discharging me back to my GP care, but I need to see the consultant in January because he wants to talk about my kidney. S, I exclaim “My kidney?!” and she says “Yes, you were aware that you had a kidney infection?” I resist the urge to reply that yes, 6 CT scans, 2 ultrasounds, long term antibiotics and a very serious conversation about me potentially having it removed as the infection was so persistent had given me a clue, and merely said that yes, I was, but I was under the care of the urology department for that so I didn’t understand why (10 months after I was admitted) they now felt like they had to get involved, but ok, if that’s what they wanted, I would be there in January. She then said that I needed to be very closely monitoring my blood sugar as this was probably a honeymoon period and they would probably climb rapidly and I’m in danger of going back into DKA. They are fine between 4 and 10, but if they go over 20 to seek urgent medical attention. So, I said, but I’m type 2, aren’t I? At which point they admitted that they’d lost the test results, so they don’t officially know, oops. And they’ll send me a letter discharging me and goodbye.
WHAT?! I am so confused and scared. I am a woman of above average intelligence and I just don’t understand what’s going on. I am so angry with the department – things they didn’t tell me include having to adapt the novo to what I was eating, what I should be eating, how to count carbs and the effect it had, what to do if I was ill and quite possibly a lot of other things that haven’t cropped up yet.
Thank you for reading this far – if I could make you a cup of tea, I would! In a nutshell – the questions I have are:
Any insights, general advice or just sharing experiences would be very, very much appreciated. I am extremely lucky in that I have a very good and strong support network of friends ad my husband who have all been amazing. But I’ve never been ill before and it’s a scary and lonely place…
Thank you
I apologise in advance, but this is going to be a long one – I thought I was doing really well, but a couple of conversations recently have made me very confused and now I have no idea what’s going on and I was hoping that hearing other peoples’ experiences might be able to point me in the right direction. I will keep this as brief as possible, but it’s been an action-packed year!
So, a bit of backstory – I’m 53, female and hadn’t been to a doctor for years – hadn’t had anything that made me think it necessary. Then my Mum (who had been 100% fit and independent, looking after the garden and house single handedly as well as walking her dog twice a day at the age of 83) was taken suddenly ill at the beginning of November last year. She fought with everything she’d got, but it wasn’t enough and she died at the beginning of December. January – March was spent dealing with her funeral and interring her ashes and her horrendous sister. I wasn’t very well in February – felt fluey and completely lost my appetite. I got over that, but still didn’t feel well and was losing weight. I put this down to the grief and stress of losing Mum. But then it all came to a head at the end of March when I collapsed at home.
I was taken into hospital where I was diagnosed with diabetes (don’t know the type – that will be explained later), in DKA, a serious kidney infection and sepsis. I then spent 6 weeks in hospital, 3 in ITU and 3 on the normal ward while they got my kidney (mainly) under control.
While in hospital, I saw the diabetic nurse 2 or 3 times who just told me when to check for ketones and to tell the DVLA that I was on insulin. They also said they’d sent a blood sample to Exeter to find out if I was type 1 or 2 but it would take ages to get the results back. (Literally all I was told). They wouldn’t even come and see me when I was discharged as there was potentially COVID on my ward. When I was discharged, I was insulin dependent – regime was 30 units Abasaglar mornings and 7 units Novorapid with each meal. I had my hbA1C tested once in hospital when I was fist admitted and it was 118 – there’s no other record of it on my notes that I can currently access, although I have requested them all for the time I was in hospital.
I was discharged on the 3rd May and I was still very weak from the sepsis and kidney infection at this point – still on long term antibiotics and no appetite at all (I lost 20kg from December – June). Next interaction I had with the diabetic unit was in June when the diabetic dietitian rang me. She was really useful and it was at this point I discovered that I needed to base the Novo injections on the amount of carbs I had per meal, so if we had a carb free meal then I didn’t need to take any. At this point, still on same doses of insulin and blood sugars averaging about 8 – 9.
I also made contact with my GP, who turns out to be a specialist in diabetes and has been the reason I’m still relatively sane. He ordered blood tests. My hba1c was now 43 – mostly, I suspect, because I’d hardly eaten anything in hospital (the food was beyond disgusting) and had started to really cut down on carbs and just eat more healthily. He reduced my Abasaglar to 26 units on a morning and told me to experiment with the Novo depending on the carbs in my meals. Blood sugars were now high 7 – high 8s depending on time of day. I get a letter from the diabetic unit cancelling the clinic appointment I had in September and moving it to December (!).
Follow up with GP in September – blood sugars now average low 7s. Blood pressure normal after stopping steroids. Hba1c down to 41. GP reduces Abasaglar to 10 units in the morning and keeps novorapid the same. Makes first mention of potentially transitioning me from insulin to tablets.
End October – blood sugar still average low 7s. Reduced Abasaglar to 5 units am. Novorapid to 4 units per meal and to add in metformin 500mg morning and evening. One horrendous day of side effects from the Metformin, but then settles down. I had asked my GP whether I needed to keep the appointment t the diabetic clinic as they hadn’t been in touch. He advised that I did, but should be asked to be discharged to GP care.
November – hba1c down to 39. Blood sugars mid – high 6s. GP stops the insulin, adds in 5m Linagliptin on a morning. Tells me to keep monitoring blood sugars and go back in 10 days. Blood sugars remain stable at mid-high 6s.
I then get a call out of the blue from the diabetic department! Now, bear in mind, so far as they’re aware, I’ve had no conversations about my diabetes since the end of April. She says they’ve had a cancellation for that Friday’s clinic and would I be able to come then instead of 20th December. So, I said yes, I could. She then asked in the most patronising tone if I’d been able to monitor my blood sugar (!!). So, I told her that yes, it was averaging 6 – 7, I was off insulin and my hba1c was 39. There was an immensely long pause and she said “How have you managed that?” So, I told her it was with the support of my GP, eating healthily and taking more exercise. So, she said that she would speak to the consultant, but would recommend that I be discharged to GP care and not to worry about the clinic appointment. The consultant (with whom I had never spoken, but had an appointment in mid-January) might still want to see me. Fine.
Went to see the GP next day who told me all was good and that I didn’t need to test my blood sugar any more unless I wanted to. He was pleased about me being discharged from the hospital, so, so far as I was concerned, all was going well in my world for the first time in months.
Then I get another call from the diabetic unit. They are discharging me back to my GP care, but I need to see the consultant in January because he wants to talk about my kidney. S, I exclaim “My kidney?!” and she says “Yes, you were aware that you had a kidney infection?” I resist the urge to reply that yes, 6 CT scans, 2 ultrasounds, long term antibiotics and a very serious conversation about me potentially having it removed as the infection was so persistent had given me a clue, and merely said that yes, I was, but I was under the care of the urology department for that so I didn’t understand why (10 months after I was admitted) they now felt like they had to get involved, but ok, if that’s what they wanted, I would be there in January. She then said that I needed to be very closely monitoring my blood sugar as this was probably a honeymoon period and they would probably climb rapidly and I’m in danger of going back into DKA. They are fine between 4 and 10, but if they go over 20 to seek urgent medical attention. So, I said, but I’m type 2, aren’t I? At which point they admitted that they’d lost the test results, so they don’t officially know, oops. And they’ll send me a letter discharging me and goodbye.
WHAT?! I am so confused and scared. I am a woman of above average intelligence and I just don’t understand what’s going on. I am so angry with the department – things they didn’t tell me include having to adapt the novo to what I was eating, what I should be eating, how to count carbs and the effect it had, what to do if I was ill and quite possibly a lot of other things that haven’t cropped up yet.
Thank you for reading this far – if I could make you a cup of tea, I would! In a nutshell – the questions I have are:
- Is this honeymoon period a thing?
- How do I know if I’ve got type 1 or 2?
- Can I pay for this test privately?
- Can I ask for a 2nd opinion as I don’t trust anything the department says to me – all the other care I have had has been phenomenal – it is just them.
- At what point do I start worrying about my blood sugars? (Currently high 5s, low 6s)
- Why does the consultant now want to talk about my kidney if I’m under urology (and it’s steadily improving – there is no infection and the remaining haematoma is shrinking at a good rate.
Any insights, general advice or just sharing experiences would be very, very much appreciated. I am extremely lucky in that I have a very good and strong support network of friends ad my husband who have all been amazing. But I’ve never been ill before and it’s a scary and lonely place…
Thank you
