Hi all My name is Catherine, 47, Female living in Canbe...

Allergies, blood and immune system
1

Hi all

My name is Catherine, 47, Female living in Canberra Australia. I went to the Doctor last Saturday to see if I was going through menopause (I had a hysterectomy about 5 years ago). The doctor ordered an iron test and the results showed that I should be tested for haemochromatosis - I will get the gene results back next Tuesday.

Since then, I have spoken with my mum who advised me that she is a carrier of the c282y gene - my father's whereabouts is unknown so I don't know what he is. She said that she had told me about it last year but I can't remember (disturbing memory lapses is another symptom).

I am feeling shocked at this news for the following reasons:

1. I had been diagnosed bipolar (manic depressive) 10 years ago because of mood swings, depression etc. I was prescribed lithium which I only took for a short time because I didn't trust the diagnosis and figured that traumatic events led me to crack up.

2. I was diagnosed 2 years ago and the pdoc was going to put me on some sort of addictive drug similar to speed - I didn't take it and went searching again for answers to my anger, irritability, mood swings, depression etc.

3. The next pdoc said I was 'normal' and told me that I had a narrow excape from the drugs the last pdoc was suggesting I go on - I got this doctor to put it down in writing....but my emotional/mental problems have continued.

4. The last pdoc I saw agreed I was bipolar and put me on epilim (sodium valproate) - I took it for 6 months increasing the dosage to 1500mg a day - once again I had no relief from the mood swings etc so the week before Christmas 2004 I stopped taking it - 7 months ago.

So this is what I am thinking...I think that I do not have bipolar at all, indeed, from what I have read and researched about iron overload, it appears that irritability, anger, mood swings and depression are symptoms of this disease - I know that I could be jumping the gun here and maybe I have BOTH haemochromatosis AND bipolar...I will have to wait and see - I gave blood today for the first time.

I recently read a pubmed article regarding iron overload among psychiatric outpatients - it basically says that out of those patients with high iron levels, 80% had been diagnosed with bipolar affective disorder and like myself, these patients had no family history of it and did not respond to treatment.....

I now believe that I have suffered needlessly all my life and I desperately want to talk with other iron overloaded people who have been misdiagnosed as having a mental illness.

There are a lot of questions that I have and I am extremely concerned that many people being treated for mental illness may indeed be suffering with iron overload. Many doctors do not realize that irritability, mood swings, anger and depression are symptoms of haemochromatosis - indeed no one has ever checked my iron levels before! There is much focus in the various publications on haemochromatosis on the physical symptoms and very little (in Australia) on the mental/emotional/psychological symptoms.

Public and GP and Pdoc education and awareness regarding ALL the symptoms of iron overload needs to be raised and I would welcome any suggestions on ways to help do this.

Kind regards

Catherine

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Hi Catherine,

I was taken into Hospital approximately 2 months ago with a chest problem.

The chest problem was in fact a Lung, Spleen, Liver and Heart problem.

I have recently been informed I have Hemochromatosis, I was informed I have iron levels 77 times the normal average.

I would like to discuss with yourself if convenient?

Much Appreciated,

Tom

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3

Hi Catherine, I am so glad I found this post!!! Im Moira and im in manchester england.

Ive had a pretty traumatic life, had a breakdown 6 years ago and was diagnosed bipolar.

I have just come out of hospital today after a second breakdown brought on by stress at finding out I have

two copies of C282y gene! Wow what a shock to the system and boy does everything now make sense!

On admission last week within two days i started my period, out of three admissions in 6 years of managing my bipolar the right way and doing what i should, i began my period within days two out of the three admissions. I have my first appointment with gastroenterology department in a couple of weeks

now, im only 46 and probably a few years of the menopause, however i am pushing my doc to start the plebotomies asap as i believe the hemo is responsible for the bipolar.

I have passed details to my mental health consultant and hoping to raise awareness.

As you posted this post some years ago, I am interested to hear how things panned out for you, if the plebotomies works and how you are coping with the condition(s).

To me its a no brainer that these two are linked. In the last 12 months i have been diagnosed with IBS after years of suffering in silence.

My father died at 84, he had rhumetoid arthritis , enlarged heart, age onset diabetes and had a few depressive episodes, his mother too died at 84 but she had at least 16 pregnancies that Im aware of and possibly had the conditon too.

Ive been a little afraid of saying anything about this diagnosis as there would be huge implications to drug comanies if this condition was tested for and treated early, makes you wonder how and why this condition is kept off the radar? it just seems so ridiculous that something that could be treated so easily and create blood stocks could be 'overlooked'? paranoia? maybe but who cares, this condition should be screened for. my poor father spent the last 8 years of his life bed ridden with ulcerated feet, and this is not happening to me or my three sons who thankfully have been tested and get the results and treatment if need be.

Your post really helped,

thanks a lot.

moira

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Moira,

Now that you mention it I can think of a distinct association between when my anxiety is bad and when it began to get a lot better. Now, keep in mind that I've always suffered from a bit of anxiety but it never picked up until I was about 20 years old (I was diagnosed with haemochromatosis at age 21). For about two years off and on it was very bad and the anxiety attacks were so awful. But now, my levels are much, much lower than they used to be (they weren't as bad as 77 times what they should be, in comparison my levels were at 500 when they were meant to be about 12 - 50). But now that I only require phlebotomies two or three times a year, my anxiety has calmed down.

That's not to say that maybe what's happened is that I've come to realize more what my issues are, what makes me anxious, and how to deal with it. And this time last year I also went to three or four sessions with a psychologist and she really helped me out when it comes to letting some things go and getting a different perspective - but everything that's been said here is very interesting to me. If it was at all possible I would be very keen in doing a study that tests the percentage of people who have been diagnosed with iron overload, how many of them have some sort of mental issue in comparison to the "regular" population. I would like to know what we would find out.

All of that being said, I do know that because iron overload makes you tired, fatigued, drowsy, and a plethora of other things, you often become irritable because your body isn't functioning properly. I don't know what lead to your diagnoses of bipolar disorder for you and the comments above, but how severe was what you were going through? Now that you've seen a drop in your levels have your mood swings lessened?

5

Hi Catherine and Moira, I am from Australia as well. I coordinate a HH support group and one of our members has bipolar as well. He also suspects his father had HH and bipolar. Now from my personal experience with undiagnosed family and those related to me, some members of family (male in these cases) were very moody, unpleasant, hard to get on with, unlovable.

I have since found that Haemo does cause Encephalopathy which when you look it up, it causes mild memory loss, changes to personality (as per above), to severe depression, to dementia, to Alzheimer's, parkinsons, multiple sclerosis. So why not bipolar? I am afraid there is denial of this even in the Australian Assoc.

Look up the Iron Disorders Institute, look for forms, click on Hemochromatosis Reference Chart (2.27MB) and on page 2, you will find a list of organs that are affected by HH. You will see Brain - Encephalopathy. They may have some studies on it. Also google Hemochromatosis and BiPolar (using the US spelling).

Keep up your venesections, get that ferritin iron right down to <30 before you start decreasing how often yo have them. Keep in touch and let us know how you go.

6

Catherine, you mentioned in another post somewhere that you were unable to post in the Haemochromatosis Australia forum because you had to pay. You must have misread something, as they do provide information about becoming a member, or making a donation, but it is not necessary to post on the forum.

I have found there is a glltch in accessing the forum since they changed their www address to ha. But if you use the full word of haemochromatosis.org.au you can access it ok.

It is a fully volunteer organisation, with a small handful of people doing a lot of work on our behalf from their own homes and telephones. Memberships and donations pay for the booklets, brochures, flyers, etc. that they distribute.

Good luck.