Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.

[Mr Raba]

Why hopeful?  Because hemochromatosis is easily treated.

There is a large symptom overlap with CFS. It may also be causing my POIS symptoms. Will see in a few weeks if treatment makes a difference.

After 27 years of this mystery illness (CFS and POIS combo) maybe a plausible explanation for it all. Hoping for potential significant relief as well.

Iron overload can affect the pituitary and multiple other organs affecting hormonal  balance.

In all the Dr. Visits I had no one measured serum ferritin. Mine was 500. Other complimentary blood iron tests confirmed my diagnosis (serum transferin)

Ferritin is a measure of iron overload. And one need not have hereditary primary hemochromatosis to have hemochromatosis.

Furthermore because hemochromatosis is rare, one is not likely to be evaluated for it.

Will keep you posted.

Will see a hematologist in a month or so and start treatment to see what happens.

Has anyone else here had their ferritin levels measured? If so what were the results?

[Scary sheep]

Had mine measured a year ago. It was 77 at the time.

[berlin1984]

Did you guys do a gene test? I'm homozygous for H63D. I don't have the other one.

What do others here in forum with gene test have for those genes?

You can check manually or use https://checkiron.com/ or GenVue or Promethease.

OK I see you replied here:

I have high ferritin on the other hand. About 500. Diagnosed with Hemochromatosis. Not the inherited type.  Hematologist thinks it could be caused by inflammation.  No Iron stored in liver. So Iron levels in POIS/CFS  is a complex.

Still would be interested from others here

Are you sure you have NONE of the genes? Not even carrier (heterozygous) for one of them?

[berlin1984]

haemochromatosis -> increaed risk for parasites because of higher iron availability? -> https://www.bmj.com/rapid-response/2011/11/03/why-haemochromatosis-so-common

Other pathogens -> https://www.sciencedirect.com/science/article/pii/S1201971207000811

[berlin1984]

Iron overload can affect the pituitary and multiple other organs affecting hormonal  balance.

Blood Donation or Phlebotomy could increase testosterone for some people:

https://www.youtube.com/results?search_query=low+testosterone+iron+overload

https://www.google.com/search?q=iron+overload+testosterone

[b_jim]

Ferritine at ~600 for me (3 times more normal level)
Doc said nothing to do under 1000.
Other abnormal parameters : red cells count below max, 51-52% hematocrit...

[b_jim]

Profoundly low testosterone levels are a common finding severe iron overload.

Severe means > 1000 ...

[berlin1984]

Two people on Reddit posted about high ferritin and iron overload theories:

https://www.reddit.com/r/POIS/comments/1bfi2gv/how_are_your_iron_and_ferritin_levels_iron/
"On my lab tests I was having high iron and ferritin. Iron was as I remember like 3points higher and ferritin was like 450(normal is around 50-100)."

https://www.reddit.com/r/Hemochromatosis/comments/zstc78/need_your_help_27_m_hh_c282y_h63d/
"One very odd one is that after I masturbate I'll get like really dark depressed, tired, defeated, delusioned (yes, delusional) for about 2-3 days. It's consistent with POIS (Post Orgasmic Illness Syndrome)"

[berlin1984]

Ferritine at ~600 for me (3 times more normal level)
Doc said nothing to do under 1000.
Other abnormal parameters : red cells count below max, 51-52% hematocrit...

600? Heh?
Then look into changing your doctor. Or go donate blood and help yourself and others.
From what I read around the internet, therapeutic goal is for Ferritin < 50 and iron saturation under 50%.
See also this books: The Iron Curse

I donated blood 3 times so far this year (started only this year). My ferritin is around 70 now and saturation at at 37%. My wellness goal will be ferritin < 50 and saturation under 35%.

What are your genetic SNPs?

For me over the years my (POIS symptoms and general) health got better, including things not related to orgasms like alcohol tolerance or hay fever.
For example I don't seem to have after-orgasm light intolerance at all anymore, I don't even wear sunglasses except for driving a car. A hat is enough.I also don't have sore throats the day after orgasm anymore 
(....)
I'm also consciously trying to compensate for my genetic penalties:
Iron overload -> blood donations, not eating much red meat except with a lot of green ice tea (+ drinking green tea in general)
(...)

[berlin1984]

Some results:

Transferrin saturation was 75% (normal is  20.1 to 50%)
Tranferrin was 2.04 (normal is 2.01 to 3.8 g/l)
Iron was 40.1 (normal is 5.9 to 34.5 ?mol/l).
In previous tests my iron and ferritin levels have been normal, transferrin saturation is consistently high.

Re the haemochromatosis gene test, I don't know I'm afraid. My GP called me with the results at a bad moment and all I took in was that they were negative. I will try to find out and let you know Berlin.

(emphasis mine)