My struggle with insulin

I am a 48-year-old woman living in Devon.  I had a late diagnosis of Type 1 diabetes at the age of 44. 

I was unusual from the outset for a Type 1, not only being older than most, but also becoming ill very slowly, rather than rapidly.  My GP thought I was Type 2, so at first I was given all sorts of dietary advice etc which just wasn't right for me. 

Then I found out I needed to use insulin.  I am medically informed, motivated, have good psychological resources and expected to adjust readily to insulin treatment.  In fact, I became progressively worse, trying six different insulin regimes before I discovered that I am intolerant to synthetic 'human' insulins.  
 

 
Anne became a fan of pigs after switching to pork insulin

Despite "perfect" HbA1cs, and despite doing insulin to carbohydrate adjustments (which I hated), I felt more and more unwell.  I had wild swings in blood glucose (from 22 to 2 mmol/l in only 20 minutes), symptoms like physical panic attacks (presumably because the hypos made my body release lots of the danger chemical adrenaline), mood swings, feeling like a different person, fatigue, poor concentration, no sense of hunger, and frequent infections.  

I became so physically and cognitively disabled that I had to stop working as a hospital consultant psychiatrist.  My cognitive function was so impaired that I had short-term memory problems, could not hold a conversation, could not recognise faces, could not empathise with my patients and could not work out drug doses.  It got to the stage where I could barely go out as I couldn't cope: it was like having early dementia. 

It was very distressing for someone who had been so competent in the world before.  My diabetologist thought I was depressed (as a psychiatrist I could quite firmly tell him that depressed people don't lose the ability to recognise faces!) and also thought I should have a pump, to get my glucose levels more stable.  I knew I'd never manage a pump, as my brain just wasn't working.  I was retired on grounds of ill health at the age of only 45. 
 
But this is also a story of triumph over adversity.  I feel I owe my life to other patients.  I read an article by another insulin user who described identical symptoms to mine.  He got back his life when he switched to animal insulin. 

Apparently it's well known amongst patients that a proportion of insulin-users just can't tolerate the synthetic genetically-engineered 'human' insulins, and especially the insulin analogues with a very rapid speed of action. 
 
I started pork insulin and within just three days felt hungry for the first time in 18 months.  Gradually I have returned to functioning fully and am completely recovered.  My HbA1c is 7.3 per cent, I never have hypos, and I don't need to carbohydrate count.  I'm a completely low-maintenance Type 1.  We are all different - I need pork insulin, but it might not suit others. 

Luckily, the only side effect I have had from pork insulin is a new-found admiration and love for pigs!  It is a real worry for those of us that use pork insulin, as one manufacturer no longer makes it.  Luckily another company has expanded production and are committed to making it for the foreseeable future. 

I have used my experience positively and work for diabetes charities, lecture on the local Masters degree on the psychological aspects of diabetes, and I have used my experience of adjusting every aspect of my life to six different insulin regimes to write a self-help guide to insulin use.  

I now use my experiences positively in working as a private psychiatrist and rehabilitation psychotherapist, offering health coaching to people suffering the consequences of trauma, enduring illness or disability.
 
My message to other people with diabetes is: trust your body and learn from other patients.  If you listen to your symptoms and share them with others, there will be someone out there who can put you on the right track if you are struggling. 

Your comments on this story

Mark said:  "The last story from the girl who lost two stone is very similar to mine -dieting, gym etc and how good i feel for it.

"People are saying how much better I look and how much better my looks are and believe me that is a major boost to my self- esteem especially at 47. Well done and keep it up I am loving how much better i feel and can't believe it."