Patient Story

A patient’s experience of thiamine deficiency

My weight loss journey started with a conversation with my GP. I asked for recommendation for a surgeon in the area/region I was looking to have the surgery in (not my home town).

The advice I was given to prepare for surgery was around a pre-op diet (i.e. meal replacement shakes) – advice was extremely limited and did not take into account my allergies despite dietician/surgeon being made aware of mine. There were no pre-operative discussions by my team about the need for bloods tests and multivitamins. I was given a blood test form to have done but there was no conversation around what was being tested for or why and no conversation about the results. The only conversation around vitamins was when I asked for an opinion on the multivitamin that I had selected (based on my own research that said taking one was important). Although technically my pre-operative care included the support from a dietitian only very limited support was provided.

Within the first week after surgery I felt something wasn’t right. I had persistent vomiting, inability to keep food or water down, collapsed in the shower and had to be taken to hospital for rehydration. I sort the help of my surgeon and his team, family GP, other specialists from the local area and hospitals (e.g. gastroenterologist, neurologist, eye specialist, neurophysio etc).

I only learnt that I was thiamine deficient after repeated admissions to local hospitals, a neurologist was assigned to my case and diagnosed thiamine deficiency (wernickes-korsakoff) immediately upon reading my case notes. Deficiency was confirmed through blood testing.

The impact of this deficiency on my life has been huge and lasting. I could not see or hear properly, could not walk properly, could not remember anything longer than around 5 minutes. Losing my memories was particularly frightening and distressing. It also caused me to have to take nearly a year off work, which had impacts on my career and finances. As I had had surgery in a different state to my home, it also had an impact on my relationship as I was physically separated for the majority of the time from my husband, which was very emotionally distressing.

I’m still not fully recovered more than a year post surgery.

After my experience the advice I would give someone who is about to have weight loss surgery is not to have it unless there is a life threatening need.

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