Iron again!!
 

At the risk of being called doomer and gloomer again and because I've promised my Association that I would post 'everywhere' here's a article that doesn't cost anything to read and perhaps might help someone else.

Iron poisoning: I blamed my tiredness, aching joints and lack of energy on being a mum | Mail Online

Re: Iron again!!
 

The link works for me.

At the start of last year my cousin rang me to tell me that she had been diagnosed with this condition......and that I needed to go and be checked out.
I hate visiting the quack for anything and knowing a bit about this condition feared that if I had it, I would remain in their clutches forever.
I made an appointment to see my own named GP.....because I felt that I could talk to him(I had worked with him at QPH when he was a junior doctor and knew that He would be the best person to talk to....and he knows what makes me 'tick').
He wrote the forms for a whole load of blood tests to be done.
I had to go back and have these done by the nurse.......the results took 3 weeks to come back.
I waited with some trepidation......knowing that if the tests were positive I would have to give blood regularly for the rest of my life to keep the iron levels down....and me needle phobic!

The results were negative. I am surprised you didn't hear my sighs of relief all over the borough(and beyond).

Re: Iron again!!
 

A needle phobic ex nurse -whatever next! I think my needle phobia flew out the window about two months ago when I was in hospital. Still can't watch, either in the flesh (!) or on TV but I've got used to having it done.

Just been told I have to have another blood transfusion as the radio/chemo has lowered my haemoglobin levels so blood test on Thurs for cross matching then down to Preston for 8.30 Fri to have two pints dripped in then another blood test for chemo then radio appointment at 6.15. A long day! And at least two needles and a cannula as well.

Re: Iron again!!
 

I never minded needles when I was on the giving side, but I don't like being on the getting side:).
I am not sure if I had been diagnosed with HH whether I would have got used to the needles....and I was very good when I had the armful of blood taken.
I don't think I am really needle phobic Sue........I just don't like them when they are heading towards me, point first.

I will be thinking of you on Thursday.......hope all goes well for you.

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Thanks Marg - so far touch wood all is good. I am over a third of the way through the treatment and so far no side effects which may be still to come. Saw the consultant yesterday and he was happy.

I asked for my radio appts to be late on so Richard did not lose too much work time, and then they said at his work not to worry about when he came and went. But they are all around 6pm, and I didn't know at the beginning about all this blood stuff most of which has to be done on a Friday before 4pm. Still it gives us time to go to Sainsbury's in Preston and do some shopping between appts. We even managed a meal as well the day my last appt was not till 8pm.

I was quite fascinated watching the blood going in when I had the last transfusion, not so sure I would be so happy watching it going out all the time - which is one reason why I never fancied being a blood donor, though I have every reason to be grateful to those who are.

Just been in in the garden for an hour, potting up some seedling plants I had ordered. That's enough for one day!

Re: Iron again!!
 

I had to have one in my eye a couple of weeks ago - now that really isn't a pleasant experience!

Re: Iron again!!
 

The reason I posted (too many times!! sorry) is that hemochromatosis is one of the most common genetic conditions around. In the UK about 1 in 180 people carry the defective gene. It's very often not diagnosed as the symptoms are usually just excessive tiredness aching joints (the usual getting old problems), which is a great pity as caught early enough, a normal lifespan can be expected.
I posted this a few years ago ( when the ratio was 1 in 400) but I wasn't taken seriously. Never mind, I just wanted to put people, who might be suffering unnecessarily, in the picture. Thanks for your patience

Re: Iron again!!
 

Don't apologise, it is worth knowing about.
Knowledge is power.

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Why has the ratio gone up so much??

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I think that maybe the awareness has been raised...in both the public and in the health care professionals too.......you never find what you don't know you are looking for.

Re: Iron again!!
 

I know that once my cousin contacted me to say that she had been diagnosed, I had convinced myself that I had it.........I was tired, had the aching joints and some of the other symptoms too. But was pleased to know that my symptoms were just down to age and wear and tear.

Re: Iron again!!
 

I once had needle phobia susie, but I soon learnt to overcome it back in 1980 and my first 7 week stay in hospital, now its just part of my treatment, especially when I'm in house, but it doesn't matter how many times I going on the ward, I will never ever get used to the torcher that is taking blood gases, the is were the needle goes straight into the artery, usually in the wrist, now that does bring tears to your eyes believe me:eek::eek:

Re: Iron again!!
 

Enough to make a grown man cry!? Yes Jay fortunately I have not had to have that done, but the lady in the opposite bed did, and the doctor could not find the artery, she got really terrified and I had to go across and hold her in my arms to comfort her while he kept trying. Don't think he ever succeeded but someone else came and did it and she said it was agony though she had calmed down a bit by then. I shall never forget that.

Re: Iron again!!
 

One of the reasons Susie is that people in my age group (60+) unfortunately are dying due to not being diagnosed in time. Once the reason for death has been identified, the relatives are advised to test and what is happening now is diagnosis of a much younger age group (i.e the children of the ones who didn't make it).Also it's very common in north European races especially like me. of Irish descent. If you want to read more you can consult :
Leaving Facebook... | Facebook

Re: Iron again!!
 

Here's the link:www.hemochromatosis.org.uk

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The link doesn't work, and since you have personal experience I ask -
Will the excess iron show up on a hair mineral analysis test?

Last year I chelated out heavy metals (because I had signs of mercury poisoning) and the test after showed very minute quantities of all heavy metals (includung Iron)

Re: Iron again!!
 

The link should be
The Haemochromatosis Society UK

English spelling not American.

Try that Margaret, should work.

Re: Iron again!!
 

Margaret, the test they do is Serum Ferritin Levels.
I am not sure if it would show up in hair samples.
The iron, which cannot be processed or excreted, in people suffering from HH is deposited in the internal organs......the liver, the pancreas, the brain and the heart........it used to be called Bronze diabetes, because often those suffering from this condition were found to be diabetic and they also had iron pigment deposited in the skin...giving a bronzed(even healthy) look.
Untreated, HH can lead on to liver cancer, but once diggnosed treatment is successful and sufferers can have a normal life span.

Symptoms can include :- tiredness
Abdominal pain
Joint pains
Memory problems
depression
alopecia(hair loss)
The severity of the symptoms may vary according to the severity of the disease.......most people will not be diagnosed until they reach their 40's and women are usually diagnosed later than this.(because they lose iron during menstruation)

I hope this helps.

Re: Iron again!!
 

To be honest, they now have nurses that can do blood gases (I always see a nurse when I go for my 4 monthly MOT)at one time it was always a doctor, who, in previous lives, were kicked out of the Gestapo for cruelty:rolleyes:. its the same with a venflon for intravenous treatment, the best at inserting these are paramedics, then nurses and if you've any sense you'll keep doctors well away from that task too they're bloody useless:eek::eek:

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Margaret you are right about the ferritin test although it can be high for other conditions, not just Haemochromatosis.
The genetic test is really the only way to confirm.
Also sorry about the link, I have my members card here and it says
www.haemochromatosis .org.uk

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If there is doubt about the result they offer MRI scan.
I know that serum ferritin levels can be raised in arthritis, inflammatory conditions, infections.....hepatitis and excessive use of alcohol......so along with the iron screening, I had Liver function tests, Serum Ferritin, B12, folates, Total Iron binding Capacity, Transferrin Saturation, Common Reactive Protein(shows up infections - though it doesn't tell you what is infected) and also screening for arthritis.(it felt like an armful of blood)
Thankfully, all my results were within the normal levels.
If any of the results had been abnormal I would have been referred for MRI scan and possibly a liver biopsy.