Diagnosed with type 2 on December/possible lada but no help

[MrsC123]

Hi everyone

I posted a while ago about being diagnosed with diabetes but unsure which type as my mum has type diagnosed at 26 and brother has LADA diagnosed at 35. My Nan was also diagnosed with type 1 in hee 40s and we have multiple family members with type 2 on injectable insulin. That along with my history of gestational diabetes when very slim means LADA or a genetic issue may be possible


My post is really regarding care. I have had no advice or medication since diagnosis. I have been booked into a consultant led "diabetes problem clinic" on May 17th and the phone call stated that I have type 2 or I wouldn't even know.
I already have between 20 and 50g of carbs a day most of the time but stopped to diagnose the diabetic with HBA1C test.

Is it normal to be offered no medication, no dietary advice and a wait of 18 weeks for an appointment when first Diagnosed?
Is this the NICE guideline standard or care?
Thanks

 

[lrn2brunch]

I can only speak from my experience from being a newly diagnosed type 1.

Long story short I ended up in hospital with DKA and was very ill.
I got told the very very basics of being a type 1 and I need to take insulin and this is how much I need to take etc. Wasn’t seen by a diabetic nurse until 2 weeks after being discharged from hospital who explained things a lot better. Carbs to insulin ratio etc.

My advice is call your local diabetes nurse/community, should be easy to find. That seems far too long without seeing someone.

 

[Bertyboy]

The rate at which you get information seems to be driven largely by how much you ask for it (in the UK). I was diagnosed in November. They said "treat as type 1" on presentation. I was given an appointment to see a diabetic nurse a few weeks after that, who just said "good progress, carry on", then a dietician just before new year, who said "I don't think it's type 1, but carry on as you are but eat more carbs to avoid hypos", then saw a consultant last week who didn't want to entertain the idea of trying Metformin instead of insulin because she thought it was type 1.
So, I have no idea what I have. I'm just having to experiment with weaning myself off insulin myself.

 

[MrsC123]

I can only speak from my experience from being a newly diagnosed type 1.

Long story short I ended up in hospital with DKA and was very ill.
I got told the very very basics of being a type 1 and I need to take insulin and this is how much I need to take etc. Wasn’t seen by a diabetic nurse until 2 weeks after being discharged from hospital who explained things a lot better. Carbs to insulin ratio etc.

My advice is call your local diabetes nurse/community, should be easy to find. That seems far too long without seeing someone.

Thank you for replying. This is my fear! I don't want to be left to progress and end up sick. I hope you're getting better care now and feel more yourself

 

[MrsC123]

The rate at which you get information seems to be driven largely by how much you ask for it (in the UK). I was diagnosed in November. They said "treat as type 1" on presentation. I was given an appointment to see a diabetic nurse a few weeks after that, who just said "good progress, carry on", then a dietician just before new year, who said "I don't think it's type 1, but carry on as you are but eat more carbs to avoid hypos", then saw a consultant last week who didn't want to entertain the idea of trying Metformin instead of insulin because she thought it was type 1.
So, I have no idea what I have. I'm just having to experiment with weaning myself off insulin myself.

Hi Bertyboy

I was diagnosed after demanding tests during December. I've been borderline and had issues in pregnancies but live a veey low carb lifestyle and walk between 4 and 8 miles a day so when my weight kept creeping up I demanded a GTT that came back showing diabetes.

That's it. I haven't had more information or advice. I have such a string history of type 1 being diagnosed out of childhood in close family members that I want to be taken serious but I'm being left untik May before I'm even given advice on management, let alone pushing for GAD tests.

I could only get to speak to a consultant dietician today as all the consultants at the diabetes clinic were unavailable today but the last I spoke to said I've been booked into the Diabetes problem Clinic with a consultant but she can't say why they've done that if I haven't even been seen by a diabetic nurse or dietician

 

[Bertyboy]

Hi Bertyboy

I was diagnosed after demanding tests during December. I've been borderline and had issues in pregnancies but live a veey low carb lifestyle and walk between 4 and 8 miles a day so when my weight kept creeping up I demanded a GTT that came back showing diabetes.

That's it. I haven't had more information or advice. I have such a string history of type 1 being diagnosed out of childhood in close family members that I want to be taken serious but I'm being left untik May before I'm even given advice on management, let alone pushing for GAD tests.

I could only get to speak to a consultant dietician today as all the consultants at the diabetes clinic were unavailable today but the last I spoke to said I've been booked into the Diabetes problem Clinic with a consultant but she can't say why they've done that if I haven't even been seen by a diabetic nurse or dietician

Out of interest, what was your Ketone level when diagnosed?

 

[MrsC123]

Out of interest, what was your Ketone level when diagnosed?

When I had a GTT the fasting was 8.6 and post glucose was 15.2

I've bought a monitor to start testing and I although I live low carb and without sugars (sugar free or artificial sweeteners since 2003) I think I brought this on myself through lack of eating. It sounds silly but I usually fast until about 4pm so I exercise on empty and notice that my blood sugars goes up after fasted cardio.

My brother had far higher blood sugars than me and was told type 2 at first but then they done an antibody test based on family history and it showed he has type LADA so it's really hard to know whether someone should push for the testing.

I've just had a consultant phone and say he agrees that an antibody test is needed as I've only just began gaining extra weight so they've moved my appointment forward to April 4th. I just hope a nurse can see me before then for a little guidance

 

[Bluetit1802]

How do you feel in yourself? Now you have a meter, what sort of levels do you see before and after a meal?

 

[Bertyboy]

When I had a GTT the fasting was 8.6 and post glucose was 15.2

I've bought a monitor to start testing and I although I live low carb and without sugars (sugar free or artificial sweeteners since 2003) I think I brought this on myself through lack of eating. It sounds silly but I usually fast until about 4pm so I exercise on empty and notice that my blood sugars goes up after fasted cardio.

My brother had far higher blood sugars than me and was told type 2 at first but then they done an antibody test based on family history and it showed he has type LADA so it's really hard to know whether someone should push for the testing.

I've just had a consultant phone and say he agrees that an antibody test is needed as I've only just began gaining extra weight so they've moved my appointment forward to April 4th. I just hope a nurse can see me before then for a little guidance

Well, that is very high...almost DKA levels. My blood ketones were only just shy of 12 mmol/l and in the basis of that, the diabetic nurse felt it was type 1. Did they not even give you an insulin injection there and then?

 

[Daibell]

Hi. I think you are being treated badly. It is very likely that you are LADA due to family history and your BS must be monitored to avoid DKA. You should be on at least some medication as well as keeping the carbs down. Depending on your HBa1C which you must have within 3 months or less will guide the meds. Often Gliclazide will be prescribed initially for LADA but will change to insulin later if needed. There are other meds as well. You should be offered a meter but if refused do buy one

 

[Alexandra100]

I usually fast until about 4pm so I exercise on empty and notice that my blood sugars goes up after fasted cardio.

I have noticed a huge variety on this Forum in people's reaction to exercise. It seems to run the whole gamut, from people who find just walking into the next room raises their bg to people who do extremely vigorous exercise while fasting. Up to you to find what suits you.