Not a Vampire Or anything but...
Posted , 6 users are following.
I noticied if I happen to cut myself for instance a paper cut Or any scrape or bump my blood tastes what I can only desribe as like I've been sucking on a old metal pipe 
its seriously strong now since my iron levels were taken down to target 45ml - I'm due for blood test in October so its going to be interesting to see just how much its spirled back up to from June where I had my last section - I'm in MainT phase now following weekly section since Jan of this year. Its quite interesting I was talking to my GP and he rekons theres 3000 patients registered at his practice - of those 3000 only 7 have been diagnosed with Haem but I'm the only genetic patient - I just wonder how many people out there are walking round undiagnosed with a ticking time bomb on their hands and don't know thing bout it
2 likes, 18 replies
sunni13905 PaulRL70
Posted
I'm from Canada and where I live it's really hard to convince a Dr. to sent you for the testing. I have high ferritin levels (right now they are just over 300) along with many of the symptoms. I was sent for the testing back in December 2014 but the results were never sent back to the clinic.(so they say) I've asked numerous times to be re tested but I keep getting put off. Very frustrating. I too have the weird metallic taste sometimes. Just seems to come out of nowhere. No Blood sucking... but do have very thick almost black blood. When I get bloodwork done it doesn't shoot so much as oozes into the vials. Even the blood collection techs have commented on this. I too have wondered the same thing. I think a lot of the "unknown" diagnosed as could be linked to HH.
Sunni
PaulRL70 sunni13905
Posted
Hmm noticed its started to get less the metalic taste - My levels were 1000 when I was diagnosed last Dec / Jan of this Year - Teeth are still going like castinettes though but not as often as they were. Could be metal fillings don't help the prob
pamelasp PaulRL70
Posted
hi Paul, i am new to all this, although I have had horrendous symptoms for many years. just received results from 23 and me, and I have inherited the gene from both parents. My GP sounded very vague, but has ordered all iron studies. I have LGL leukaemia, Lupus, rheumatoid arthritis, endocrine issues, fatty liver, acute diverticulitis, plus much more. Had Addisons diagnosed in 2018, 12 months later I was weaned off the steroids, can just about make enough on a good day to survive.
My worst symptom is the disgusting metallic taste 24/7 which is discolouring my beautiful teeth. This started in 2010 and I was attending Guys hospital in London for 5 years, even had a lip biopsy. They hadn't a clue.
Next is the numbness in my left foot and calf, came on overnight xmas 2019, I sometimes drag it behind me.
Then the passing out and memory loss, always early evening when I have to go to bed as I have nothing left to give.
I look extremely healthy as I have a golden glow, face, neck arms with no watch or ring marks. Always thought this was down to adrenal insufficiency . As I have leukaemia I have not been in the sun for 8 years!
My body temperature is usually about 35c and I'm always freezing cold, except if I do anything and then the sweat just pours off of me.
In the night I sweat a lot and get tingling in my chest.
My left flank hurts around my pancreas.
I have hypertension/hypotension, which can't be treated because I pass out.
I am dizzy, especially in the mornings.
I have no appetite and am nauseous and vomit a lot.
I am borderline diabetic, it drops to under 4 frequently.
I am now 67 yrs old and these symptoms started after my hysterectomy in 2002, making me feel as if I don't have a life anymore. I cant get my bloods done until next Monday because of covid. Is it too late for me?