Anybody with haemochromatosis?

[yadozybollix]

After several months of getting nowhere with my GP I paid for a private endocrinologist appointment in desperation! Symptoms are fatigue, joint pain, brain fog, hair loss.
All my hormone levels were fine so it doesn't look like I'm menopausal (although it's certainly not impossible, I'm 48).
My ferritin levels are very high, 428 (anything over 200 is considered high). I'm seeing a haematologist on Thursday, but naturally I've been googling feverishly 😁.
I'm Irish which means I've got a higher genetic propensity for haemochromatosis apparently.
Just wondering if anyone else has had this diagnosis and how easy it would be to manage?

Hi, my brother has it and I am a carrier. After diagnosis he had to have a blood drain every few months for about a year but now is just monitored and has them less frequently and all is well. It’s just like giving blood.

Thanks @Backslider sounds easy enough to manage!

My friend has it. She has to go every so often to have blood taken away. As far as I am aware she hasn't any kind of symptoms apart from going an unusual shade of brown in the sunshine.
She avoids any iron rich food and cast iron pans.

@ClemmyTine thank you, any shade of brown would be welcome haha!

DH's family have this throughout all the men but not in the women as far as they know yet. They are also of irish heritage. They periodically have blood removed and avoid any multivitamins that have iron in them, so only take single specific vitamins. Due to his family, DH was able to get tested to see if he was a carrier so useful to know when we were thinking about our family (in case you have kids that might be thinking about TTC one day!)

I'm on the borders- my last ferretin 4 months ago was 198- doctor felt it may be because I'm 61 but last period I had was at 36 as went on mirena then right through to menopause.

I'm retesting in October as weirdly I have high ferretin, high active B 12, but low folic acid

Ooh that's interesting @Crikeyalmighty as I have low folic acid as well, I'm taking supplements on prescription.

@yadozybollix I do have some of the symptoms you do though, joint pain, hair loss and in my case an awful lot of headaches and neck pain . I had a lot of investigations last year too .

My dad has it. He had some minor organ damage by the time he was diagnosed, and the treatment was quite rough initially, be ause they had to take enough blood that his body would start using up the stuff being stored in his body, so he basically had medically induced anaemia plus the effects of hemochromatosis for a while. But once it was under control, it wasn't a big deal, and he gets bled pretty infrequently these days.

Two of my friends. One manages it with no trouble - she gets very ill if she misses a 'blood letting' appointment, so she's only done that twice. The second friend really struggles with her treatments, so they're trying drugs only for now. The volume reduction completely fixes her mobility problems, though.

I'm showing signs (too many red cells) so will follow with interest.

I think some of the difficulty in getting a diagnosis is that the symptoms mimic other things like menopause, vitamin D deficiency, depression. I literally had every single thing tested incl thyroid function, insulin resistance, adrenal function etc. It's hard to convince a GP to do all of those! So I never even considered it or knew anything about it to be honest.
Hoping I can get some clarity when I see the haematologist and get on the road to recovery. I'm so, so tired all the time 😔

428 isn’t very high. My DH was 850 when first diagnosed and they said it was mild as they see some people with well over 1000. DH had regular blood taken, every two weeks for two years. His level was 67 last time, so doesn’t need blood taking. He has a blood test in three months.