Advice on approach to take with DN

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Sydney Bristowe

Sydney Bristowe

Well-Known Member
Relationship to Diabetes
Type 2
Hey folks... Been a long time since I posted here and you were all so helpful when I was first diagnosed, that this seemed the obvious place to come for advice now!

Backstory
I was diagnosed T2 with an HBA1C of 54 in 2016 at the age of 35. I was put straight on Metformin and with that and a few lifestyle changes got this down to 41 by April. I was well controlled for 2 years when my levels increased to 74, metformin was increased to the max dose and I took part in an NHS VLCD trial which got me back down to the high 40s where I stayed until late 2019 when it started creeping up again and I was put on Empagliflozin in addition the 2000mg Metformin

Lockdown "progress"
Just before lockdown started my Empa dose was increased to the max. I was managing okay, run/walking 5k once or twice a week and doing weights workouts two or three times a week as well as more gentle walks. By the summer my energy levels were noticeably lower so I made an appointment with the DN. My level was 64, so they took me off the Empa and started Trulicity. They also ordered one of the GAD antibody tests which eventually came back negative. This takes us to November when my Trulicity dose was increased. At this point I changed jobs and moved from Lancashire to Milton Keynes. The diabetes care at my old practice was superb so I was moving into the unknown!

In November I had a check at my new GP practice and tested at 65. They put me on an additional 5mg of Linagliptin with a 3 month follow up. This initially did bring my fasting BG down (I self funded a Libre 2) but after 8 weeks or so my levels started creeping up again. My March check up showed my levels still at 65, so they switched me from Linagliptin to Dapagliflozin.

Current Situation
I've been on the Dapa (In addition to 200mg Metformin and 1.5mg Trulicity) for 4 weeks and my symptoms of hyperglycemia have increased. I'm exhausted all the time, I need to nap to get through the day and exercising is impossible, I'm having headaches daily and suffering from nausea on an almost daily basis too. I need to go to the bathroom three times at night and 5 to 8 times during the day. My Libre readings for the last fortnight show that I've spent 35% of my time with my BG at 13.3 or above and I've not gone below 9.5 at all in that time. I can't face waiting another 2 months for my next check up like this so I've arranged a call with my DN for Friday

I'd like some advice on how to approach the Nurse and if I should be asking for any specific course of action? TYIA
 
Hi
You have mentioned all these various medications you are taking but don't mention if you have made any dietary changes which could have contributed to the issues you are having. It would help if you gave an idea of the sort of meals/foods you are having on a daily basis.
Do you have a blood glucose monitor to enable you to test the effect foods are having on your levels, as this might help to identify foods which you are having which you are particularly intolerant to and help to tailor your diet with some lower carbohydrate foods.
 
Hi. Yes do let us know what your current diet is and hopefully it is low-carb. Do you have excess weight? A GAD test by itself is not good enough to test for T1. It needs to be accompanied by a C-Peptide test to check your insulin levels. GAD only checks for certain antibodies but T1 can be caused by other things such as viruses.
 
@Sydney Bristowe , welcome back to the forum. I am sorry to hear of diabetes troubles.
Am I right in thinking that the NHS VLCD you mentioned in your first post is an NHS very low carbohydrate diet ?
How many carbohydrates do you normally have.

I know you have had a negative GAD test , may understanding is that it is not always conclusive as you may or may not be producing antibodies at the time .

Have they done the C-peptide test which actually measures the amount of insulin your pancreas produces rather than checking for antibodies.
You see when I first read your post , I though yes a misdiagnosis of T2 ?
But then I thought after , that it may be that your pancreases beta cells has worn itself out and no matter how the meds prod it to produce more and more insulin, it just can’t, so insulin is the only way forward, insulin dependent T2.
Then there is of course LADA a slow onset T1

Explain to your nurse how frustrated you are , how bad you feel in yourself . Ask to be referred to the diabetes clinic at the hospital and keep banging on about it till they refer you, on another forum nowt to do with diabetes we used to advise on being the most squeakiest wheel , so you get the most oil. Which in your case means a referral to the real specialists.
 
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Worth asking for a c-peptide test to make sure that you are T2 and not a slow on-set T1?

All the meds that you have been given will not work if you are.
 
Sorry you’ve been having such a difficult time of things @Sydney Bristowe - but congratulations on the house move!

Hope you can get to the bottom of things, and hopefully a cPeptide check will show whether or not you are still producing much of your own insulin - which may explain why some of the meds you are on might be struggling?
 
Hi Everyone - thank you all for the advice

WRT the question about diet and weight... I am overweight (BMI 34.9) although I have lost around 10kg over the last couple of years. My weight has remained stable for the last 6 months at 107kg. I always say that my diet isn’t the greatest, but it’s not the worst either. A majority of the time I eat around 2000 cals and 130g to 180g carb with 3 to 4 overindulgent days per month where I don’t track and around 2 days a week on average where I eat 1000 to 1200 cals and 80 to 100g carb just because I don’t feel hungry at all on those days.

When I spoke to the nurse she understood my concerns and has ordered the c-peptide test for me. I will be having bloods for that drawn on Friday. She has also agreed with the Doctor to add in a once daily insulin, so next Monday I’ll be starting on 6 units of Lantus alongside my existing meds with a check in the following Monday
 
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