Author Topic: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.  (Read 2390 times)

Mr Raba

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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?
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Scary sheep

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Had mine measured a year ago. It was 77 at the time.
Symptoms last 6-7 days. Onset of muscle weakness after 30 seconds. Symptoms include: brain fog, fatigue, depression, pale skin/dark circles under eyes,  digestive problems, difficulty taking a full breath, irritability. NONE of these are present out of POIS.

berlin1984

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Re: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.
« Reply #2 on: February 26, 2024, 07:15:05 AM »
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

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Re: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.
« Reply #3 on: February 26, 2024, 07:21:34 AM »
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

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Re: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.
« Reply #4 on: February 26, 2024, 07:24:55 AM »
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

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Re: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.
« Reply #5 on: February 29, 2024, 07:59:29 AM »
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...
Taurine = Anti-Pois
Lyme disease "cured" in 2020.

b_jim

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Re: Hemochromatosis. Causes hypogonadism and I have that hopeful diagnosis.
« Reply #6 on: February 29, 2024, 08:05:13 AM »
Profoundly low testosterone levels are a common finding severe iron overload.

Severe means > 1000 ...

Taurine = Anti-Pois
Lyme disease "cured" in 2020.

berlin1984

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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

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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)
(...)