Neuropathy HELP

[ModyGirl]

HI guys,

Just wondering if there's anyone else out there like me? I've got MODY (triggered and identified during pregnancy in 2016). My Hba1c at diagnosis was 54. I've got no way of knowing if my sugars were running high before this but I do know I never had symptoms until I was pregnant and the endocrinologist said I had only just tipped over in to diabetic numbers and that was without medication so we have to assume the gene wasn't active before this.

Decembet 2020 I started to get loads of unusual symptoms linked to autonomic neuropathy, then a few sensory symptoms. This cleared up after causing much anxiety.

Loads of things have happened on and off since then but fast forward to today and i've got burning in my hands and feet which is only getting more painful! My last Hba1c was 47. I've ranged from 32-56 for the entire duration I've had diabetes. I do get spikes amongst those Hba1c's but has anyone else experienced symptoms like me? Full blown autonomic/sensory neuropathy within 4 years of diagnosis at which point my max Hba1c had been 46 (other than diagnosis!)

I'm so scared to be 34 and dealing with worsening symptoms. Where will I be in 5 or 10 years if I'm like this now?!

 

[KennyA]

I had neuropathy leading to burning/ stabbing/pins and needles in my feet long before diagnosis. My HbA1c would have been around 43 or 44mmol/mol when it started.

It went very quickly (and has stayed away) after I started keto and brought my A1c right down - a drop from 50 to 36 in a few months. I still have a slight residual tingle at times, which I think is probably permanent, but it is very far from pain.

 

[Jordi77]

I’ve got it 24/7 and it is not much to worry about just watch because you lose the feeling in your feet as you don’t feel hot water or anything like that but you do if you sit down in it and the other day I lost all feelings in my feet and lower legs and I couldn’t walk but after a 30 minute sit down I got the feeling back and you have to watch when you cut your toe nails that you don’t make them bleed as you do not feel it and you don’t feel cold weather and you don’t feel if you have broken any bones when you have because I know when I did a few times…..

My Hba1c is currently at 90 and but when I was diagnosed it was at 95 but mine stays around 89 all the time as I’m type 2 on insulin with 5 injections a day but my doctors keep saying I am borderline between types 1 and 2 so I’m just stuck there for life now

 

[ModyGirl]

@KennyA wow that's such a low number to have neuropathy isn't it?! At least that's what I've been led to believe. Well done for bringing your levels down through diet. I just think I must be really unlucky to have autonomic/sensory neuropathy this soon in?

@Jordi77 sorry to hear about your struggles - that sounds tough.

 

[KennyA]

@KennyA wow that's such a low number to have neuropathy isn't it?! At least that's what I've been led to believe. Well done for bringing your levels down through diet. I just think I must be really unlucky to have autonomic/sensory neuropathy this soon in?

@Jordi77 sorry to hear about your struggles - that sounds tough.

I'm not sure it is. There's a sort of belief around that nobody gets symptoms until they've an HbA1c higher than 48. In fact one of the reasons that 48 was picked as the "automatic diagnosis" point is that diabetic retinopathy is rare (ie not unknown) below that figure.

Ther's plenty of evidence from folks on these forums that symptoms start a lot earlier, and this is backed up by the textbook. Bilous and Donnelly also say that there is strong evidence that microvascular disease (ie neuropathy, nephropathy, retinopathy) is related to the duration and severity of high blood glucose in both T1 and T2 diabetes (see graph). I guess that each of us has a different definition of what's "high blood glucose" in our own cases.