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Might have haemochromatosis - need some help please

Posted , 5 users are following.

tilzo
tilzo

Hello everyone,

I am a 20 year old woman with no previous health concerns, no family history of heart problems, I don't smoke at all or drink to excess and I am a healthy weight. I went to the doctor with some chest aches which were causing me major anxiety (I was convinced I was having a heart attack), but had an ECG and was given the all clear. However, she ran some blood tests and everything came back fine (kidney and liver function, total blood count) apart from elevated iron (tranferrin saturation was 67%, serum iron was 34µmol/L and ferritin was normal range at 69%)

I did another blood test and the results came back similar so the doctor ordered a haemochromatosis studies blood test.

I no longer have the inital symptoms I went to the doctor for but I stil feel a bit off - anxious and sad, having aches and tingling sensation behind my left shoulder blade, tightness in left bicep (between elbow and shoulder), foggy brain finding it hard to concentrate, tingly lips and behind knees

I am really worried about these symptoms, I'm concerned that my iron levels have caused damage to my heart. 

My questions are -

1) Has anyone else experienced these symptoms? Or do you think it is a sign of heart troubles/ my anxiety manifesting?

2) Does anyone know how long the specific haemochromatosis blood test results take to come back? My other two came back the next day but it has been 3 days since I had my genetics blood test.

3) Do you think my iron levels from the first blood test could possibly be high enough to cause any damage to my organs (specifically my heart)? My doctor said that their isn't any sign of damage and not to worry but I am very stressed that she has missed something/ hasn't checked thouroughly enough...

Thanks so much if you read this all, I am very worried at the moment and just want to know what's going on with me!

 

1 like, 4 replies

4 Replies

  • mary92507
    mary92507 tilzo

    Posted

    You are right to be concerned, return to your GP express your concerns and request a positive/negative diagnosis. It is because GP's  dismiss/ or don't remember being taught about it in medical school which is why most GP's don't even consider it.  this condition is not rare but because Dr's refuse to consider it most people are left till late in life before discovering they have this condition.  Or they die and it's the autopsy that discovers it, By then the damage is done.  You have clearly investigated this condition and your concerns have been raised why? Does a member of your family have this condition?. 

  • deidre74971
    deidre74971 tilzo

    Posted

    Hi your genetic test will take a couple of weeks it sounds like your ferritin level sounds all okay my husband was 1700 and is now 54 having his blood taken for only 6 months and hasn't had any blood taken since. Wait and see if you have a genetic problem first if that comes back okay you will be fine, if it dosn't you will still be okay i think you have to have it for a long time before it does any damage all my husband has is a pains in his hands.Try not to worry you will be okay

  • mike80628
    mike80628 tilzo

    Posted

    Hiya...yeah, you'll need to wait for the gene test to come back first. Can take a week or so for that to get back. Not sure about all your symptoms..Def needs investigating....the key thing is to wait for the gene test. My ferritin level was 2000 last year! It was 38 yesterday...that's after weekly venesections for a year!! I went to the Doc with painful hands..my knuckles...luckily my doc was on the ball and did a ferritin test...then the gene test. Luckily there was no organ damage! I'm now becoming a blood donor. Will go every six weeks initially with regular blood tests to check my ferritin level....then I'll get to know how quickly my level rises...eventually, I hope to maybe just donate blood 3-4 times a year.

    Anyway, hope all goes well for you. Keep us posted. The online community here are very supportive....always here for you....

    Mike.

  • mary92507
    mary92507 tilzo

    Posted

    Hi I just re read my reply and realised how negative it sounded. I am sorry it's not doom and gloom. I shouldn't have been so pessimistic.

    Hugs

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