Low Haemoglobin

Lynn , it was only 1998 when the found that venesection would help. Before the wouldn't tell... if they knew. What would they say... you will die of this, we dont know when or how. That is why both yours and my Father would not have known. I had my result on my 60th birthday but a hysterectomy at 28 means It wasn't found as early as it could have been. We all have crappy stories and all have different effects but we will conquor because science has at least given us a chance. Xx Together we all will be survivors.

Coincidentally we both had our diagnosis at 60yrs young. I know investigations etc only started around 1998. 10 yrs ago when I was 60 I was told I had cancer (3weeks maybe to live) hey, they got it wrong...twice....but they didn't do further investigations to find out and they had said I had cancer in my stomach liver etc. Basically they couldn't find it after I changed my diet so I obviously started to improve but only after a blood tests re my enlarged liver di d they find a problem, fibroscan etc . Not caused by alcohol even tho I liked to drink, bubbly being my favourite. So they sent me for more blood tests (11 taken) & they came back with GH, unfortunately they had missed (10yrs ago- no follow up after no cancer etc)in fact they told me go drink a crate of chambers & celebrate......wrong.....10 yrs later the fact that I have irreversible cirrhosis of my liver!!!! Thanks Doctors & consultants so luckily I'm trying through weekly VS & getting my ferritin level down hopefully stopping on going storage in my liver or any other organs. 🤞I'm a very positive person, pilates instructor, therapist and a Hanna somatic movement coach so I have the tools to manage pain in back / joints etc and am stuck with iron fist (arthritis in knuckles) but I'm working on it lol. A life time of Doctors thinking I had a virus in my body waiting to come out. Well Atleast I know now so I help myself with as much knowledge as I can and happy to share. My mum is still alive at 87 and has no GH no symptoms so guessing she couldn't have passed to me so must have got full blown from my dad but really well never ever know!!! All we can do is shout from the roof tops to help others... I tell everyone , I wear a wristband aswell. I'm in Rickmansworth and since realise there are a few others locally but still no one contacts each other which I find really strange. Hey ho ?

1996 was the time that genetic testing for haemochromatosis came into play.  A dr in the 1920's discovered the existence of haemochromatosis (and coined the word) when he found a couple of his female patients (sisters) with liver disease when they never drank alcohol at all.  They were doing a form of venesection back then (like slicing the vein to let the blood run out).

Much earlier in the middle ages, leaches were used to get rid of the "bad blood" but not necessarily for haemochromatosis because they did not know about it - they were used for all health issues.

1998 was when google came into play.  I was diagnosed in 1998 after nine horrible years of severe symptoms post hysterectomy.  My dr was in denial.  My hips broke up from osteo-necrosis caused by HH.  Finally after a diagnosis in 1998 I was able to google search about it.

But drs continued to remain ignorant and a lot of them still are as they don't read the research.  We have a dr in Australia who picked up after the original dr and another European dr followed through.  But that did not mean that the rest of Australian drs read his research.  As with other countries, we are still working to create awareness.

I agree Lynn, and it's really great being able to chat with all you guys who are in a similar situation, it really helps, so thanks for all the advice and sharing your experiences. Xx

Your mother has to be a carrier for you to inherit genetic haemochromatosis.  My mother was a carrier too and despite all the negative things she did to her body (drinking, smoking) she was much stronger and 'healthier' than I am with homozygous C282Y.

It would be interesting for her to be genetically tested just for your information.  She is entitled to be genetically tested as she is a first-degree relative of yours.

Maybe I should pay for it anyway but almost why should I ? Won't really change my diagnose but I will insist for my son, he's just due a baby next week and she has been tested and they said the baby will be tested at some stage but I don't know when. 

Me too, twice now 😕😡. i was told to drink loads of water with lemon juice in and eat non haeme food seperate from haeme, (which is fruit n veg with iron) but not with fish or meat. So I have a pint of like warm water with a desert spoon of lemon before i eat. I add all fruit and veg one day for a vegetarian day and chicken or fish with potatoes but no iron laden veg the following day. We need the fresh iron in greens and fruit to give good oxygenation, but want to drive the old iron out of the tissues and organs. It is all very odd but my numbers are now dropping quickly. Good luck I hope this helps.

Thanks Ellen, I will certainly give that a try. Glad to hear your numbers are dropping, you must be so pleased 😊

I am pleased with the drop. Unfortunately I was turned away again this afternoon because I have a cold 😣 we just have to keep going. Things seem to take two steps back and one forward, but... We will get there.

My haemoglobin at lowest dropped to 112 & so they sent me home for a week and carried on when 115 now my iron levels dropped to 50 & up to 89 after a couple of weeks for each VS to bring back to 50 but my haemoglobin. Has recovered back to 150 now. I? might try to warm lemon etc to rid old iron from organs see if it helps my cirrhosis. 

Best wishes

Xx