guidance

[Idekfxck]

Hi everyone,

I’m reaching out because I need some guidance regarding my health.

My dad passed away last November due to hemochromatosis, and his sister has the condition as well. I was tested for it, but my doctors have assured me that I don’t have it and seem to dismiss my blood test results.

I've always struggled with what doctors have described as low iron, and I’ve been on and off iron supplements since I was about 14 years old.

My recent blood test results are as follows:

- UIBC: 17.5

- Transferrin Saturation: 68%

- Iron: 37.7

- Ferritin: 17

After discussing these results with a medical friend, they suggested that these numbers could indicate a possible issue and advised me to speak with my doctor again. However, my attempts to do so have been unsuccessful.

I also had my B12 levels tested twice; the results were 963 in July and 1241 this time. My doctors say this is normal and that I shouldn’t worry, but I’m feeling increasingly dismissed.

What should I do next? Any advice would be greatly appreciated. Thank you!

[isi123]

Hello,

It depends on many factors, age, gender. But with 17 ferritin it doesn't seem like you have hemochromatosis. I had over 1000 when I was diagnosed. You have a somewhat high saturation but by itself it doesn't mean anything.

If you have recently taken iron supplements it may explain this elevation in saturation, but I repeat, by itself it does not mean Hemochromatosis. I don't think anyone with hemochromatosis could be taking iron supplements and it would be safe.

In the end we have to let ourselves be guided by the doctors and if you are not satisfied, you can always have a second opinion.We are here to help.

[LaceyLady]

Hi

The hard n fast way of knowing if you have Haemochromatosis or a carrier is to have a genetic test which might be hard to get from a GP, I know. You can go to the Haemochromatosis.org.uk web site and buy a test. I eventually got my GP to do it as I bleed a lot.

There are groups on Facebook that can be helpful even for those who only have one gene.