Insulin allergy

Unbelievable, no idea that it was possible but apparently it is… As a person with diabetes you can be allergic to insulin… I am allergic to the adjuvant in long-acting insulin and on top of that I am allergic to humane insulin which is in all types of short-acting insulin.  Huh, come again? How is this possible? And how can I be alive, insulin is my lifeline after all!

After all this disbelief there was relief…! It is not my fault, despite all my efforts to control blood sugars without much success. Despite measuring 8x a day next to having a sensor, weighing off food on some days and keeping to all the rules my sugars still weren’t stable. But what’s next?

My diagnosis was made in Amsterdam which is the only hospital in the Netherlands which has an insulin allergy department. Appointments are only made once every two months so the wait was long. The good thing was that during this afternoon you see others in the same situation, because yes there are more of us! There were newbies like myself waiting for a diagnosis, as well as veterans coming in for a check-up. Thankfully a treatment is available! Desensitization is the name (which I still can’t pronounce it in one go). This means I am hospitalized for 3-7 days and have to give myself an increasing amount of insulin every 15 minutes. Apparently after doing this for a couple of days your body gets used to it and suddenly no longer makes allergic reactions. How it works? Even the doctors aren’t exactly sure. It is not guaranteed that all symptoms are gone but it always results in a decrease of symptoms which almost automatically leads to better sugars.

Currently I have my set in my arm (which, unlike the USA, is uncommon in the Netherlands ), as the itch in my legs or stomach was too much. Changing my shirt or grabbing a bag reminds me that it’s there but most new things take some getting used to. Since my set is in my arm my insulin requirements have drastically dropped which is good as my endo says therapy is more likely to be successful! Unfortunately I do already have red, itchy bumps after changing sites after only using my arms for two weeks.  How long until my insulin starts to work less in my arms as well and I am book to constants highs?

The only thing I can do is upload my sugars, and I am thankful for my diabetes team who is giving me their full support. Each week they faithfully adjust my insulin requirements and together we look at what needs to be changed this week. Other than that I have to wait patiently… but I was never very good at that. The therapy has an average waiting time of 2-8 months of which the first 4 have passed. You can call and check what place on the waiting list you are on. To not drive myself and the receptionist crazy I am allowed to call on the first of October. My exam will then be coming up and it would be good to know if extra measurements need to be made for that. It is a little bit of security, a moment to which I can count down. One of the few securities I have. Every day I could get the life changing phone call that I can be hospitalized tomorrow. Naturally my phone never leaves me.

Another thing which is for sure; I am unique! At my diabetes center I am the only one with these allergies, my endo even asked his colleagues. All of them have heard of it, but none have had an actual patient, lucky me! That’s what you get when you belong to the 0.3% of lucky ones!

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