Neuropathy?

[Je21]

Hello

I am 26 years old and was diagnosed with Late-onset type 1( 1.5/LADA) in September 2021, after a misdiagnosis of type 2 in the July.
I’m not sure what “caused” my diabetes. But my hba1c was VERY high at almost 160.

In November I had my 2nd hba1c taken and it was just below 80, (still high but I am getting it down).

I have had my diabetes eye check and I had some slight background retinopathy, but not enough to need glasses or treatment.

I have recently started getting a numbness in my right leg, it goes from the back of my thigh to my foot and when I’ve been on my feet all day it feels as though my foot is damp when it isn’t. Does this sound like it could be neuropathy?

I am struggling with my diagnosis in general and very worried about diabetes complications, loss of limbs, having my driving license taken away etc

 

[In Response]

Firstly, no one knows what causes Type 1 diabetes so there is no point bearing yourself up about it - it is nothing you did or didn’t do.

Background retinopathy can be reversed. I have done so myself.
In fact, the risk of all complications can be significantly reduced by managing your blood sugar levels.

Have you spoken to your diabetes team about your fears and you numbness in your leg? I cannot comment on whether it is neuropathy but if it is causing you problems you need to get it checked out.

You don’t mention how you manage your diabetes. Do you have a Libre? If not, this is something to discuss as it should help with your management will reduce risk of the complications you mention.

My advice is to be kind to yourself and talk to your diabetes team.

 

[EllieM]

Hi @Je21

We can't diagnose here so I have to be slightly careful what I say, but I would point out that complications like neuropathy usually come about after many years of high bgs (unlikely for someone with a T1 variant, because that is usually much faster onset). Remember that just because you are diabetic it doesn't stop you getting all the random stuff that non diabetics get. Personally, in your position, I'd mention it to your GP, but I definitely wouldn't assume it's neuropathy.

As for complications etc. OK, I freely admit I've been very lucky on my T1 journey, but when I was diagnosed 51 years ago there were no such things as glucometers (let alone cgms) and the treatment was a couple of injections a day and you ate fixed amounts of carbs for your meals. I've had periods of truly atrocious control in my youth. And while I've got a bit of on again off again background neuropathy, and I'm sure I'd be in slightly better condition if I weren't diabetic, I've still got my eyesight, kidneys, all my limbs and am able to lead an active life.

As for the driving license, it's a pain for lorry drivers. For normal car drivers, you just have to have hypo awareness (usually not an issue for new T1s) and be rigorous about testing before you drive and always having hypo treatment (aka sugar) in the car . (Again, I've had a license since I was 17 and though I nearly lost it a few years ago, would have lost it if I'd had another bad hypo, I've changed things round so I'm not at any risk of losing it now.) My T1 mum kept hers all her life (T1 since your age).

The prospects for young T1s such as yourself are very very bright, as long as you pay a bit of attention to your levels and don't forget about T1 altogether. There are very few careers that are closed to you (astronaut maybe). Don't ignore it but please don't let it stop you living and enjoying life.

Good luck, please try not to panic.