LADA NHS update treatment

[Inka]

I kind of understand what you’re saying @DaveB and it must be frustrating for you to not be able to get Type 1 tech, but Type 1 is, by definition, autoimmune, in the same way Type 3c is ‘damage to pancreas’ (apologies if that’s a clumsy definition, but you know what I mean). My C Peptide is extremely, extremely low. If yours is just above the Type 1 level, perhaps you’re more akin to slim Type 2s who need insulin because their own production has declined?

With Type 1 and viruses, it’s not the virus itself that attacks the beta cells, it’s a person’s own immune system (because things have gone wrong and instead of just targeting the virus it mistakenly kills off its own beta cells too).

The latest thinking that I’ve read is that Type 1 is connected to the gut - either a too leaky gut or something off with the microbiome. Interestingly, years ago I was ill for a long period of time so had tests for lots of viruses. There are a few viruses that are suspects in initiating the autoimmune attack that causes Type 1, but my tests showed I hadn’t ever had any of those. The cause of Type 1 is still unknown but it’s definitely autoimmune because they (scientists and doctors) have evidence showing the immune attack on the beta cells.

 

[everydayupsanddowns]

people like me are classified as T2 because we don't have antibodies yet have all the symptoms and treatment as a T1. My C-Peptide when last measured was just above the T1 limit so what am I? There are many others like myself. I've agreed with my diabetes consultant that I'm listed as 'Insulin Dependent' but with no type. My surgery GP lists me as T2. I've been refused DAFNE as I'm not T1. It's a mess. I define myself as 'Last onset T1' which I believe fits.

That’s pretty poor on behalf of the HCPs. T1 diagnosis is mostly based on clinical factors, and the NICE guidance states that lack of antibodies does not discount T1 (of which LADA is a subset, and the term is felt increasingly questionable and of low value I think). Because once the beta cells have all been splatted, antibodies ebb away in some people and are no longer evident.

Low cPeptide and lack of other features of the metabolic syndrome should really steer the diagnosis away from T2, especially if you had other clinical factors associated with T1 - ketonuria, rapid onset, weight loss etc.

I completely understand your frustration if you are being denied access to treatment options because of a labelling mix-up