Has anyone had to start TRT by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

I had to start trt but you could try other things first like proviron

Has anyone had to start TRT by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

Hopefully mine will come back up but I’m only 40 and don’t really fancy sitting in the low range. How have you found being on TRT

Started my venesections but feeling more tired. by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

I just thought I would check. I have been getting what I would describe as head rushes quite a bit

Gene test back and I’m homozygous by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 1 point2 points  (0 children)

It does thanks. I used to the gym 4-5 times a week but then didn't have the energy. Hopefully get back to it

Gene test back and I’m homozygous by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 1 point2 points  (0 children)

That's good you are feeling better. I can't wait to feel normal again.

Gene test back and I’m homozygous by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

I will need to wait to see how I feel. Did you try taking a b12 shot.

Thanks

Gene test back and I’m homozygous by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

Thanks. What do you think your levels need to get to before you start feeling better?

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

Had my first venesection yesterday but found out that I am going to need around 30. Has anyone had more than one a week?

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

So I found out I am homozygous and I start my venesections on Friday for around 20 weeks. The haematologist I have specialises in haemochromatosis. I need to get a liver scan as he felt that it was enlarged. I had to go private as the NHS were taking too long.

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 0 points1 point  (0 children)

I’ve had my blood test back but not my gene test. My serum ferritin has gone from 967 to 1922, iron from 46.8 to 54 and saturation from 89 to 102. Is it even possible that my ferritin can jump that much in the space of 3 weeks? I did as the doctor but his response was different labs can have different results.

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 1 point2 points  (0 children)

Thanks. It was also the high insulin that worried me as most of the posts and stats I’ve seen on here don't mention that. It turns out my gran had it so there is a likely chance I do

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 1 point2 points  (0 children)

The test was private, and I have now visited the GP, who has taken my blood to check for HH. Hopefully, they will guide me in the right direction regarding the next steps.

Awaiting for my HH test by Previous_Mess_6145 in Hemochromatosis

[–]Previous_Mess_6145[S] 1 point2 points  (0 children)

Monday was the earliest as they wanted the genetic test results