No treatment?

At what levels do they typically start treating? Just high Farratin level?

My guess is that a ferritin level of 98 will not prompt venesection.  They should keep monitoring you.  As I always have a very high TS% which does not come down with venesections, I am taking Vit E and CoQ10 which was recommended in a HH researcher's paper.  Can't say it is bringing my level down but perhaps it is working on my mitochondria which gets damaged from high levels of TS% for more than 6-13 years.  Mine has been high for 27 years.

If they do not recommend venesections at this stage and you do not want to see your levels go higher, donate blood at least every 3 months.

I ignored the "tested positive for hemp" before - is is a typo?

There is no blood test for fatty liver, only a scan can pick it up (or a biopsy), so perhaps think about eliminating sugars and starches.

 

Hi, 

I meant to type that I tested positive a year ago for hemo C282Y homozygote. My ferritin has gone from 30-98 in a year. I take vitamin e twice daily for hot flashes. My adrenals are not producing adequate hormones. I assume my ferritin is rising as I’m not cycling anymore. The lowest my saturation has been is 55%.  I am to see my gastro tomorrow. I’ll ask about fatty liver.  Like I said before... It seems to me that doctors don’t really react to Hemo as if it’s a problem.  My last GP said.. hemo just means you have thick blood. 🤔

Does the Vit e work for your hot flashes?  I am constantly trying to keep up my oestrogen - my body seems to require lots.  The symptoms of my haemochromatosis started before 6 weeks after my hysterectomy - i.e. no longer losing blood.  Luckily I went directly onto oestrogen supplements but it never seems enough to allay all symptoms (26 years later).

Haemochromatosis is also a hormone thief, on top of which I ended up with a pituitary tumour among a lot of other things, as despite my severe symptoms, I was not diagnosed till 9 years later when my hips broke up.

As for the dr's interpretation ...... heaven helps us!

As you are in menopause which is when haemochromatosis hits women if not discovered beforehand, it sounds like your ferritin levels will keep increasing.  As the symptoms of menopause and haemochromatosis are very similar, I have huge sympathy for those not diagnosed as nothing (hrt) will work for them until they also get their HH treated.

If I was in your position and knowing what I know now, I would definitely start donating blood as often as you are allowed in order to keep the ferritin down.  Best not to mention HH though, as the blood bank is likely to send you away, even though your ferritin level is not high.

I used to donate before I was diagnosed and they said they loved people like me - my Hb was always high (lots of red blood cells).  Then when I was diagnosed and told them, they did not want to know me, even though my blood was very much welcome beforehand!!

You have to educate yourself and be your own advocate making sure you get the right treatment for you.  You must know the details of haemochromatosis to have leverage.

If your situation increases despite early blood donations, ask to be referred to a haematologist.

Good luck!

 

Hi, 

I started having hormone issues and that is how I initially was diagnosed. The vitamin E does help my flashes but like you I’m always  low on   estrogen. I’m going to all to my hormone doc today and ask him if we can adjust hormones to where I bleed once a month and it would seem that would.  Went into menopause at 45. Im thinking that hemo might be responsible for stealing my hormones away early and I also had an ovary removed and left with a damaged one. I know I felt better when my ferritin was between 40-50.  I hate the fog in my head. I can’t concentrate.  

Yes, that fog is horrible.  One goes from being intelligent to being unable to think at all.  Haemo is known to cause early menopause.  My optimal ferritin level is 34.