Sudden change

[Wendymars]

I was diagnosed with type 2 last December after an hba1c of 60 at a routine blood test, no symptoms. I was started on Metformin and a follow up in June showed it had gone down to 53, so all good.

For a few weeks I had been excessively thirsty, bad night cramps, lost 14kg in weight in about 4 weeks, so I made an appointment with the GP, who repeated my hba1c. It had increased to 111!

No change in diet etc, nurse checked my bloods and they were in the 20s, despite it being more than 3 hours since I last ate. I was given a glucose monitor and a prescription for gliclazide, 80mg twice a day and Metformin increased from 3 a day to 4. At the time my urine was +4 for ketones.

That was on Thursday.

Oh Sunday my bloods were up to 32.7, and I was being sick, I called 111 and was fobbed off, saw GP yesterday and he doubled the gliclazide with a review on Thursday. He says if there isn't an improvement I'll need to start on insulin.

Anyone able to shed some light on why this would suddenly happen? I am very overweight, but that's nothing new, nothing else has changed, I do have RA and inject methotrexate and benepali for that but again that's not new. Anything I've read suggests insulin is usually after many years of type 2.

 

[Rokaab]

lost 14kg in weight in about 4 weeks,

Was that unexpected weight loss? If so that can be a sign of Type 1

Oh Sunday my bloods were up to 32.7, and I was being sick, I called 111 and was fobbed off,

If your sugars are still very high and you are still throwing up or feeling nauseous, head to A&E, cos that sounds like it could DKA (diabetic ketoacidosis) and presuming you have no way to check for ketones those need testing asap, DKA is very very serious if it is that (it may not be but you really do need to get checked)

Edit, just noticed your urine testing positive for ketones at your docs, not sure why you weren't sent to A&E there and then, you should have been ie. go to A&E, now!

 

[Wendymars]

Yep I wasn't trying to lose weight.
Sugars are back down a bit now (21.5 when I woke this morning, 22.5 2 hours after a small bowl of cereal)
Doc tested the ketones yesterday and they weren't as high so he wasn't concerned. He has said if it goes up again or I'm sick to go to a&e straight away

 

[Rokaab]

Yep I wasn't trying to lose weight.
Sugars are back down a bit now (21.5 when I woke this morning, 22.5 2 hours after a small bowl of cereal)
Doc tested the ketones yesterday and they weren't as high so he wasn't concerned. He has said if it goes up again or I'm sick to go to a&e straight away

Not to put to fine a point on it, I reckon you should go now: this is what is written on the NHS's site for DKA:

And by that it means A&E , you were definitely above it, not sure what your latest test was but DKA is a killer.

 

[Antje77]

He has said if it goes up again or I'm sick to go to a&e straight away

Very sound advice!

Please keep us posted on how you're doing, hope things will settle shortly for you.
If your numbers don't significantly drop in next few days, don't let them fob you off with another appointment in 3 months.

 

[Wendymars]

My GP is evidently keeping a close eye on me, had an appointment for Thursday and he's called me to ask how it's going! He's going to speak to the diabetic nurses at the hospital then call me back...

 

[gemma_T1]

Hi, I really think they have misdiagnosed you. It is very unlikely that a type 2 diabetic can have blood sugars as high as yours and also go into DKA. I really think you should get to casualty ASAP. Generally GPs know nothing or indeed very little about type 1 diabetes. You blood sugars are so high you should have been sent immediately to casualty. Losing so much weight in such a short time, extremely high blood sugars and all the other systems are THE systems of type one. Please go to casualty don’t wait for your GP and don’t call 111 you need to get to hospital NOW.

 

[gemma_T1]

My GP is evidently keeping a close eye on me, had an appointment for Thursday and he's called me to ask how it's going! He's going to speak to the diabetic nurses at the hospital then call me back...

Please don’t wait for your GP, please go to casualty

 

[Oldvatr]

As a T2D who has also had stratospheric bgl levels, and been on max Metformin and Gliclazide with no significant improvement, I can say that you may still be T2, but there is a strong possibility of T1D so if your sugars do not come into control soon, then take the advice re A&E.

In my own case, I went Low Carb diet immediately, and within a week my levels were coming down so my GP allowed me to continue and we dropped the insulin option pending a good HbA1c following. I managed that, and find I am definitely T2 with a working pancreas, so I am on minimum medication and diet controlled now. But that is me, and the warnings of DKA are to be heeded. The weight loss is indicative of T1D. My weight loss came after I started dieting, not before.

You could ask the GP for a c-peptide test and possibly a GAD test to check things out. NICE have recently relaxed the restrictions on C-peptide testing I believe and that will give indication of whether your pancreas is producing enough insulin.

 

[Jaylee]

Hi, I really think they have misdiagnosed you. It is very unlikely that a type 2 diabetic can have blood sugars as high as yours and also go into DKA. I really think you should get to casualty ASAP. Generally GPs know nothing or indeed very little about type 1 diabetes. You blood sugars are so high you should have been sent immediately to casualty. Losing so much weight in such a short time, extremely high blood sugars and all the other systems are THE systems of type one. Please go to casualty don’t wait for your GP and don’t call 111 you need to get to hospital NOW.

Hi,

In my experience dialing 111 & speaking to an advisor on behalf of someone in difficulty. They would dispatch an ambulance,
Which in my friend's case was probably a faster track to getting seen than sitting in A&E.

 

[Bluetit1802]

Hi,

In my experience dialing 111 & speaking to an advisor on behalf of someone in difficulty. They would dispatch an ambulance,
Which in my friend's case was probably a faster track to getting seen than sitting in A&E.

I agree. When I had a problem about 3 years ago (nothing to do with diabetes) I went to the GP and he said I needed tests that would be done in A&E, but rather than send me there myself he ordered an ambulance for me on the grounds that I would be seen immediately in A&E without having to wait in the queue for hours on end. His plan worked and I was monitored by nurses and seen by a doctor very quickly. I wasn't an emergency either, and no blue lights on the ambulance.

 

[gemma_T1]

I agree. When I had a problem about 3 years ago (nothing to do with diabetes) I went to the GP and he said I needed tests that would be done in A&E, but rather than send me there myself he ordered an ambulance for me on the grounds that I would be seen immediately in A&E without having to wait in the queue for hours on end. His plan worked and I was monitored by nurses and seen by a doctor very quickly. I wasn't an emergency either, and no blue lights on the ambulance.

I worry about ambulance response times at the moment- my dad was critical and he had to wait for more than 6hours even though the doctor had rang for it himself numerous times. I’ve also read the ambulances are waiting a long time to “drop off” the patient.
In normal times maybe it would be the right course of action. I just worry with those high blood glucose levels and ketones, at least if the person had someone to take them they could be waiting inside the casualty and if anything happened they’d be the right place. Extremely high blood glucose, High Ketones, such extreme weight loss in a short space of time and all the rest - signal Type one and an extremely dangerous life threatening situation to me.

 

[gemma_T1]

I was diagnosed with type 2 last December after an hba1c of 60 at a routine blood test, no symptoms. I was started on Metformin and a follow up in June showed it had gone down to 53, so all good.

For a few weeks I had been excessively thirsty, bad night cramps, lost 14kg in weight in about 4 weeks, so I made an appointment with the GP, who repeated my hba1c. It had increased to 111!

No change in diet etc, nurse checked my bloods and they were in the 20s, despite it being more than 3 hours since I last ate. I was given a glucose monitor and a prescription for gliclazide, 80mg twice a day and Metformin increased from 3 a day to 4. At the time my urine was +4 for ketones.

That was on Thursday.

Oh Sunday my bloods were up to 32.7, and I was being sick, I called 111 and was fobbed off, saw GP yesterday and he doubled the gliclazide with a review on Thursday. He says if there isn't an improvement I'll need to start on insulin.

Anyone able to shed some light on why this would suddenly happen? I am very overweight, but that's nothing new, nothing else has changed, I do have RA and inject methotrexate and benepali for that but again that's not new. Anything I've read suggests insulin is usually after many years of type 2.

I really hope you have been able to see someone who has expertise and is able to get you sorted as fast as possible. Please let us all know.

 

[TriciaWs]

Many GPs don't know that T1 can show symptoms in adults so assume a new diagnosis in an adult is always T2 - hope you got to A&E.

 

[Wendymars]

Hi all,

So I didn't go to a&e, partly because I'm worried about catching covid (I'm on immunosuppressive medication for rheumatoid arthritis) my GP has called me several times - it sinks in I might not be very well when they called me without an appointment. I've started on insulin today, the GP can't get any response from the diabetes nurses at the hospital, so they've put me on to novomix 30, and are going to be calling me every day.

I'm still hovering in the low 20s, and was 27.5 before bed (ie now) but I've only had one dose of the novomix ( on top of the Metformin and gliclazide) she's started me on 6 units, to be increased day by day dependent on my levels.

It's been a bit of a whirlwind week really, I'm looking forward to hopefully feeling less thirsty and peeing less!

 

[gemma_T1]

Hi Wendy,
So happy to have your news. I was worrying about you. I really hope you start to feel better soon. I am type one and so basically know nothing about type 2. I hope the doctors will be able to sort you out as quickly as possibile. Maybe you could get some blood tests done. Someone earlier posted about that I think.
Stay in touch with your doctor, don’t be shy with them - this is your health.
It sounds like it’s a lot of experimentation to try and get those levels down.
Wishing you the best of luck and keep all us updated with what’s going on and how you are.
Don’t be shy with us either. We’re here to help and support each other.