Ferritin levels and venosection

[Iro1]

HiI wanted to share something really exciting. I had a venosection on October 28th of 450 ml this was for my raised levels of haemoglobin. The haemoglobin is raised because I am on Testoterone Replacement. The other issue was my raised ferritin, it has fluctuated around 450 for years. I know this is not that high, normal levels around 330 but my joints have ached and my brain is fuzzy

I have NAFLD whether this had caused my high ferritin or vice versa I do not know, I have a single haemochromatosis gene

Anyway my ferritin has gone down from 450 to 317!

I dont know if it is coincidental but my brain has lit up, my joints dont ache

Best of all my liver is not sitting in a bath of iron suffering more damage.

Could this be a treatment for NAFLD?

[Fibro2021]

Hi. In my opinion, this applies more to the treatment of hemochromatosis. It probably makes sense for NAFLD treatment if there is raised levels of hemoglobin and elevated ferritin or serum iron.

[Hdon]

You should only be having venesections if you have iron overload or haemochromatosis, raised ferritin alone is not sufficient evidence of that as ferritin can be raised for other reasons. Did they do a test for transferrin saturation (tsat)? Only if that is also raised in conjunction with raised ferritin, is there real evidence of iron overload. If both ferritin and tsat are raised, you should have a genetic test for haemochromatosis. I'm also intrigued why you are on testosterone replacement therapy as haemochromatosis can interfere with pituitary gland function, which can cause low testosterone. Haemochromatosis can also cause the joint pain you are experiencing. Your ferritin was only mildly elevated so caught it in time if it is haemochromatosis. If it isn't, the reason for your raised ferritin should be checked out before any more venesections, you don't want to end up anaemic.

[Iro1 in reply to Hdon]

A great reply, no chance of aneamia and I am under the care of a vastly experienced and helplful haemotology and urology professionals.The reason for the venisection is the raised haemoglibin, the cause of the raised haemoglobin is Testosterone replacement. The cause of low T not clear but diagnosed as hypogonadism.

The venosection allows me to have a normal life and has a side effect of reducing my ferritin.

The consultants monitor my bloods and would cease the treatment if necessary.

I am very happy.

[Hdon in reply to Iro1]

Good to hear. Out of interest, my diagnosis with haemochromatosis came about many years ago due to very low testosterone levels being investigated. My hypogonadism was found to be caused by pituitary failure, which in turn was caused by haemochromatosis. Good luck.

[Iro1 in reply to Hdon]

I have one gene for the haemo think the hypogonadism was related to my liver.You on T replacement?

[Fibro2021 in reply to Iro1]

It's very interesting. I read in medical articles there is an opinion that alcohol can lead to iron overload in patients with carriers of the hemochromatosis gene. In such patients, initially there is only an increase in ferritin with alcohol. After quitting alcohol, ferritin levels decrease. Of course, in doubtful cases, only a biopsy can accurately show hepatocyte iron overload.

[Hdon]

Yes, had various types over the years, injections, patches, gel sachets. I now use Tostran pump action dispenser. One copy of the gene is usually thought to be unlikely to cause you much problem.

[Iro1 in reply to Hdon]

I know but there is some research that it makes fatty liver more likely. My mum who died at 94 was found to have cirthosis at 92 I think she gave me the gene.I use the pump as well very convenient, I was on anti depressants for 3 years so that did not help.

On tadalafil daily as well saved my marriage

[Hdon]

Interesting, I didn’t know that about fatty liver.

[Iro1]

Himore research needed, I know ferritin of 450 is not excessively high but I have had it for a long time since I stopped giving blood.