Might I have Haemochromatosis?

Were the two tests in the FBC, iron and haemoglobin?  If they were, it is not necessarily true what the dr believes.  An Iron Studies is a window to a lot of health issues.  I don't understand drs reluctance to do this test, it does not cost much.

My husband's gp does this test on all his patients.  It is a sign of a good dr.  Now my gp does it too (since I told her).

Glad to hear your other tests are returning to normal.  The GGT and AST are signs of alcohol damage.  Google them for a full description.

 

Yes, Sheryl, I know what GGT and AST are indicative of.

I guess the doctor was looking at my GGT and AST returning to normal or near normal values, and all the other LFT and FBC tests being normal.

I have not felt quite as bad today, just lots of sweating, some soreness in joints, inner thigh (and genitals, oddly enough) and a vague feeling of being unwell.

Sorry, I did not mean to sound know it all, but it is amazing the number of people on these forums who do not know what various test terms mean.

I once saw my mother's LFTs on a screen and they were lit up like a Las Vagas street strip.  Now that I am deironed (i.e. ferritin low but still increases, so I still have venesections to keep it that way), I have a 'smallish' glass of red wine with dinner - it is medicinal.  The polyphenols in it helps reduce the uptake of iron.  Of course a cup of tea/coffee/milk with a meal will do the same thing!

As I sprout about HH a lot, (I run a support group), a friend told me of her nephew (20's) having genital pain, ended up having exploratory surgery which revealed nothing.  I told her to get him to ask for an Iron Studies test, and it turned out he had HH!!

 

Hi Sheryl,

No need to apologise.  Until abbout 2 weeks ago, I'd never heard of Gamma GT or AST!

I guess I should feel reassured because the GP said my liver function tests were all normal, except for GGT and AST, and they were now returning to normal too.  He said they were elevated due to recent heavy drinking, but them normalising indicates no lasting liver damage.

He also said all of the full blood count results were normal.

All of these symptoms of malaise came-on quite suddenly in-between the spells of heavy drinking in June / July, and since I have stopped.  Again, the GP was adamant that all of my symptoms are due to the recent very heavy alcohol intake and withdrawal from it.

Do physical symptoms of Haemochromatosis tend to come-on suddenly or gradually?

If I tell you that I am Northern Irish (my family going back generations are all from Belfast), you will probably feel even more strongly that I should get tested to at least rule it out?

It does tend to sneak up on males who just think they are 'getting old' and unfit, until they become impotent and they definitely want something done about that!!!!

Some find out early due to alcohol problems.  Yes, 1 in 80 of Irish heritage have HH (some don't yet know it), and 1 in 7 are carriers.  The Celts and the Vikings (Scandinavians) are said to have started it all.

The Celts moved through western Europe before settling in Ireland, Scotland and Wales spreading their dna, then the Scandinavians moved in and mixed their dna too, as they did throughout Europe.

I know my great grandmother came direct from Denmark and the other half on my father's side came from Scotland (however from their build and colouring - tall, fair, blue eyes - there was a lot of Scandinavian there too).

My husband who also has HH, was born in Scotland but his parents have Irish heritage.  And of course, our son, who could not miss out, has a compound of both our HH genes.  He was diagnosed after I was, and at 22 had a ferritin level of 772 so he was heading for disaster.  He has problems that he does not want to talk about.  He does not want to believe his mother knows ALMOST everything there is available to know about HH!!!!.  The main thing of course is to be diligent with those venesections, and he lapsed on that.

While in Australia, there is a lot of reluctance, denial and ignorance on the medical side about HH,  I am amazed that it occurs in Ireland and Scotland too - I read it time and time again.  Of course a lot of English have it now too due to mixing it up.

Do people in Ireland talk about it?  Or do they keep it a secret?  I mean, you must be bumping into people with it all the time.  In the rest of the world, 1 in 200 have HH.  Although, it is still 1 in 80 among those with Irish Heritage wherever they now live.

 

Hi Sheryl,

I had never heard about it until a few days ago, when I was Googling the symptoms I have been experiencing.

However, these symptoms have appeared quite suddenly, about a week after I stopped the very heavy drinking.  Thankfully, impotence is not amongst them (though I'm not much in the mood to put that to the test the way I'm feeling).

Is profuse sweating a symptom?

I also heard that knuckle / finger joint pain is an early symptom and almost certainly indicates Haemochromatosis.  I don't have that symptom.

All the medical opinion I have sought just says that I am suffering from alcohol withdrawals and they will go away over a short period of time.  The locum GP who I mentioned iron overload to just showed me a couple of test results from a FBC done in June and said that, if there was iron overload, the tests would have been abnormal, and they weren't.

Yes, some complain of profuse sweating, feeling too hot, feeling too cold, etc etc.  Possibly because their testosterone has been affected similar to 'manopause', or early menopause in women, i.e. the pituitary gland hormones are affected.  The hypothalamus (which sits just above the pit gland) is also affected, and this gland is responsible for our autonomous activity like thermal regulation.  This is still affecting me.  Also because it affects our immune system.  It is different for everyone.  The classic sign is liver damage.

My liver is ok, but my blood was so thick with iron that it was not feeding the fine capilliaries that feed the bone of my hips, so the bone up and died and broke up (osteo necrosis).  So I had to have both hips replaced at a young age.

I did get the classic symptom of a 'pinging' pain in peter pointer years ago which is the start of arthritis in the finger joints, so I started rubbing emu oil into my fingers and this arthritis has not affected me very much - whether because of the emu oil (known to be very good for arthritis because it is very fine) or just pure coincidence.

I also had left side chest pain for the 12 months leading up to diagnosis - cardiologists could not find anything (knew nothing about HH either) and that dissipated with each venesection.  But I do get arrythmia when my ferritin level suddenly goes higher (I get the arrythmia first - then find out later that my levels had gone high during that period - so it is not psychological).

Then a  pituitary gland tumour caused by iron overload in the pit gland.  And numerous other things because my dr took 9 years to diagnose.  In the meantime, a lot of damage was done due to the toxic iron in my organs.

So everyone gets some, but not all listed problems, and some get none at all  (for the time being anyway).

However, I hope that your symptoms do go away as you recover but it is good to have awareness of it, and if down the track you find you do have HH, it is not so bad as long as you get treatment early.

It is so good to hear someone admit so easily that their health problems are associated with heavy alcohol intake.  Most people are in denial.  So good on you.  I bet you won't be going there again too soon.

Good luck, and come back again if you have any more queries.

 

Thanks, Sheryl.

I see no point in hiding my wildly OTT alcohol consumption over the very recent past from these forums or from doctors or nurses from whom I'm seeking advice and help.  To conceal it would just have such people barking up the wrong tree and the problem persisting.

On the other hand, there's probably a risk that anything and everything can now easily be dismissed as due to alcohol, when the reality is that I was not drinking very heavily for THAT long, and don't plan on doing so again (not that anyone can be 100% certain that they wont).

If (and hopefully when!) these rotten physical symptoms disappear, I will obviously feel an awful lot better.  That would also obviously show that it has been alcohol withdrawals and is not anything else, right?

Unfortunately, our surgery runs an appointments system (there used to be "open surgery", where you could come down in the morning and wait to see a doctor, though it might not be the one of your choice) and it can often take two weeks to get an appointment.  I booked one yesterday with the GP who I normally see for next Friday, on the basis that these symptoms are not going to go away by then.  He is a very empathetic doctor and I'd not be shy about mentioning worries about something like Haeomochromatosis to him.

You are right, we do get labelled in their notes.  Mention feeling depressed and that is your problem, and the cause, ALL the time.

I went back and looked at your list of symptoms - you will see those same symptoms listed for menopause!!!  Same as when I see women complaining of these symptoms, I want to tell them to get an Iron Studies done because their symptoms are the same as HH.  Especially when women usually start iron overloading when they go into menopause.  But they don't want to know about anything else.

I started overloading immediately I had a hysterectomy at age 38 but my dr took 9 years to diagnose me.  I was so fatigued, with whole body pain, that I was staggering and slurring and I am sure my work colleages thought I was having a sip during the day.

So we got your over indulgence symptoms, menopause symptoms, and Hh symptoms all sounding the same.  Just a simple Iron Studies would clear up some of the ??? immediately.  My husband's dr tests all his patients as it is a window to a lot of health issues, not just HH.  He is a good dr.  My gp now does it too.  I had to teach her about HH.

With our health issues, I found it better to stick to a private dr so the service we get is not disjointed.  After a few years of loyalty, they often 'bulk bill' us instead of charging the full fees.