Louise, 34, Holmfirth

I started to feel unwell in early 2020, I’d just had my baby and was breastfeeding. I had pains in my abdomen, back and shoulder blades but this was put down to another health condition. I lost a lot of weight in a short time and experienced bloating, eventually being referred for a blood test as they suspected it might be cancer. My ferritin was normal but some of my other results were lower than expected with no explanation.

I experienced some other symptoms like pigmentation on my face, joint pain and palpitations seemingly out of the blue. I went to a private haematologist to have further blood tests carried out as my GP refused to do another. My ferritin levels continued to drop and my transferrin saturation - the other results that were different - went back to normal. I started to feel a bit better.

I have Scottish heritage, so it seemed like there was a possibility it was haemochromatosis based on that and some of the symptoms but I was repeatedly told that it was unlikely as my ferritin levels didn’t fit the profile.

After doing some research, I discovered Haemochromatosis UK and spoke to someone at the charity. They told me that ferritin levels aren’t always high with haemochromatosis and that transferrin saturation being raised can be criteria for testing. They were really helpful when I joined and gave me a letter to give to my GP, as well as offering genetic testing which hadn’t been mentioned to me before.

For anyone that’s worried about their health, and thinks that it might be haemochromatosis, I’d advise them to keep pushing for a diagnosis. Becoming an advocate can be one of the most powerful things you can do for your health. It’s a shame how long it can take and the mental impact this can have - I was very lucky to be able to get a private test, but others won’t have the same experience.