IMAGE DESCRIPTION: An image of someone taking their blood sugar. Title: ME/CFS: Diabetes - but not as we know it. The ME Association Logo (bottom right).

ME/CFS: Diabetes – but not as we know it

My story with Latent Autoimmune Diabetes in Adults and ME/CFS

Anon

Several years ago now, I was bedbound with severe ME until a GP tested my blood sugar which was raised at 23 mmol/L . I was initially diagnosed with type 2 diabetes and put on the Metformin (oral medication). Over the next 3 years, I was able to do minor activities and slowly (oh so very slowly) I managed to get to a point where I was housebound, which is an improvement after being many years bedbound.

Over another few years passed, the GP realised my diabetes was not responding to medication and I commenced insulin. Recently, I was hospitalised for a nasty infection where they found I have raised ketones, which doesn't usually happen in type 2 diabetes.

The hospital staff were slightly confused by my clinical presentation and the Diabetic consultant decide to test for Latent Autoimmune Diabetes in Adults (LADA)

The test for LADA is Glutamic Acid Decarboxylase Autoantibodies test (GAD antibodies test) and this was performed – but was negative. However, as I present as LADA they came to the conclusion this is likely my diagnosis, despite the test not confirming this to be the case.

I continue to be insulin controlled, however I need to closely monitor my blood sugar readings. I have a heightened awareness that if I have a temperature or an infection that I need to check my ketones to reduce the potential risk of Diabetic ketoacidosis (DKA).

This is a very serious condition that can often need an admission to intensive care unit (ICU). DKA is where a lack of insulin causes harmful substances called ketones to build up in the blood and it can be life threatening often needing urgent treatment.

Diabetes UK information on GAD antibodies test

A Glutamic Acid Decarboxylase Autoantibodies test (GAD antibodies test) is used to help discover whether someone has either type 1 diabetes or Latent Autoimmune Diabetes of Adulthood.

A GAD antibody test may be favoured as a way of testing for which type of diabetes over a c-peptide test, which measures how much insulin is being produced by the body.

Diabetes UK

What is LADA? – DiABETES UK

It's a type of diabetes which seems to straddle type 1 and type 2 Bits of it are more like type 1, and other bits are more like type 2. That's why some people call it type 1.5 diabetes or type 1 ½ diabetes.

It’s not actually classified as a separate type of diabetes at the moment, but there's some medical research going on to try and pinpoint exactly what makes it different from type 1 and type 2 diabetes.

DiABETES UK – Charity Information

Please see the following information on Diabetes from DiABETES UK including Type I, Type II, Latent Autoimmune Diabetes in Adults (LADA) also known as Type 1.5) and Mature Onset Diabetes of the Young (MODY):

If you have ME/CFS or Long Covid and also Diabetes (or prediabetic) please take part in our website survey:

Did you find this personal story interesting? If so, if you'd like to provide Feedback, please email feedback@meassociation.org.uk – we'd be interested to read your experiences.

MEA Comment

Thank you for highlighting this very important information.

As noted in the Medical Matters Question and Answer, there are people who have diabetes as well as ME/CFS and this can be a very difficult combination to manage.

And although we don't have any robust research evidence, there are reasons – such as weight gain and reduced physical activity – which probably mean that there is an increased risk of developing type 2 diabetes if you have ME/CFS.

Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

Charles Shepherd

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