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Hi again Well I have got my results back and I am homoz...

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Guest
Guest

Hi again

Well I have got my results back and I am homozygous (carry 2 genes) for c282y gene mutation. Since then I have had another blood test (after having donated blood) and instead of my iron levels going down they went up! Has this ever happenned to anyone else? Farout, how confusing. They also tested my TSH, T3 and T4 levels (Thyroid/Adrenals) to see what was happening there. More tests are to follow.

After giving blood I felt worse than ever, extremely fatigued, went manic for a couple of days and crashed for a couple of days after....aparently there could be something happening with my adrenals and electrolytes - my kidneys ache. Still feel poorly and am just struggling in to work each day. I thought I would be feeling better, how very disappointing. My house is a pigstye.

My family (mother, sisters) think I am being a panic merchant. Well all I have to say about that is I am sick to death of their discounting me as a nutcase. The arrogance and intimidation tactics of some people sickens me.

I can't rely on any support from them, indeed I have one sister who wont even get her kids checked, sticking her head in the sand....

If there is one thing I have learnt through this and that is we are all responsible for our own health and well being and one certainly can not rely on doctors to research on our behalf or be up to date on latest developments or educated.

My GP has referred me to a haemotology specialist to devise a 12mth treatment plan (I see him on the 13th September). Now he is a good GP - the only one in my 47 yrs who bothered to order an iron test.

Meanwhile my mood swings,anger outbursts and fatigue continue unabated. I take no medication and am waiting on razors edge to see if the removal of iron from my body will ease these other symptoms.

I'll keep you posted and I sure hope this is helping someone out there. I wish there was an online chat group to talk to. There is only one online support group in Australia but no chat and they charge a fee to join. In fact, I have not found one free online haemochromatosis chat support group in the world!!!

Question to any readers - Is iron overload the cause of these symptoms, or in itself, a symptom of the disease? I believe that it could be a symptom of the disease itself and perhaps is poorly named. Any other views on this?

Might start my own on yahoo or google support group.

Kind regards

Catherine

[i:6d4224aab3]This message was automatically imported from the original Patient Experience[/i:6d4224aab3]

1 like, 4 replies

4 Replies

  • Guest
    Guest

    Posted

    Catherine

    Your symptons sound exactly like my husbands. He is waiting the genetic test but has a ferritin level of 4500. He has mood swings, confusion, poor memory, can get very angry, insomnia and depression. It is very out of character and has been very difficult for him and his family. He has had 4 lots of blood letting and feels much worse for the whole week - very tired.

    Have your symptons improved at all?

    The follwoing website is interesting. A Dr Cutler has treated mental health patients with iron overload with a particular chelating drug.

    http://www.consumerhealth.org/articles/display.cfm?ID=19990303204921

    [i:0783ed0fab]This message was automatically imported from the original Patient Experience[/i:0783ed0fab]

  • Guest
    Guest

    Posted

    Hello....just diagnosed haemochromatosis. c282y. Interested to hear from anyone else who has/was/is experiencing mood swings/anxiety/depression. I am looking forward to getting treated, simply in the hope that some relief will be provided.
  • MaryT
    MaryT

    Posted

    Glad I'm not the only one feeling er, extremely fatigued, even though I am being bled once a week. (Started 6 weeks ago.) Can't say it has improved things, still feel more tired than I did before it was started!

    To my amazement I discovered it is possible to be anaemic while having HH!! My haemoglobin got a bit low the other week, but has now come back up again.

    I was interested to see I am not alone in having mood swings and depression as well as the fatigue, but sorry to hear there are others out there feeling equally awful. I walked round town today, and now just want to crawl into bed!!

    Catherine, hope you are feeling a bit better now?

  • Guest
    Guest

    Posted

    I've been deironed now for 2 years from what was originally a Ferritin of 8000, I still have daily fatigue, insominia, depression and am very Irritable, no libido, poor memeory etc.

    Have recently started researching a condition called Adrenal Fatigue, a lesser form of Addisons/Cushings Diseasebut not formally recognised as many are symptomatic even if reference ranges are normal.

    It relates to the bodies stress response and can be caused by a number of things including chronic illness - many of teh symptoms tie in with the above symptoms and there are many mentions of a relationship with hemochromatosis.

    The search for vitality goes on!

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