Suspected Hemochromatosis

Ok, I live in Australia and the very fine Haemochromatosis Australia reports that sexual dysfunction is the most common symptom of endocrine dysfunction in men with haemochromatosis, occurring in 10 to 40 per cent of cases and is often an early symptom. Sexual impotency in hypergonadic men may be restored with testosterone replacement. If I were you I'd ask the British equivalent whether they can recommend an endocrinologist who's familiar with this condition. You need blood tests to determine whether you have pituitary dysfunction. 

My knowledge of HH and experience (husband) with erectile dysfunction was certainly a lot lower than 2000 (550) - it is very much a common occurrence with men with HH, so I think that haemotologist needs to check his facts again.

As well as depositing in the pituitary gland and causing hormone problems, iron also deposits in the testicals, and ovaries in women.  Of course, it is different for everyone.

Your Ferritin level is not really high at all - generally accepted <300 (for="" males),="" but="" all="" the="" other="" symptoms="" certainly="" sound="" like="" hh.=""  do="" you="" also="" have="" coeliac,="" or="" helico="" bactor="" pylori,="" which="" could="" account="" for="" a="" low="" ferritin="" iron="" level.=""  the="" most="" important="" indicator="" is="" also="" your="" transferrin="" saturation="" %.=""  if="" it="" is="">50%, that usually indicates HH.  A genetic test will prove it one way or another if you can get your dr to do it with that level.  Do you have a 1st degree relative with HH?  If so, you are entitled to a genetic test.

A blood test will prove if you have low B12.  If it is low and you already take tablet supplementation, you probably need the injection form.  Some people just do not absortb B12 in tablet form.

Although I am now 'de-ironed' many years, I still suffer from serious fatigue and body pain.  I have discovered that iron can deposit in lymph glands, as well as in muscle, so I am going to experiment with having lymph gland drainage (massage), and later muscle massage, to see if the disbursement of iron helps first with the pain, and hopefully provide subsequent relief of fatigue.

My B12 blood test level is good!!!!  Also, check vit D3 - it can have a bearing on how you are feeling.  Get drops if not - tablets don't work in this case either.  Your dr should have also done a Liver Function Test.  Did someone suggest thyroid too?

 

Equin0x, I don't think we asked you what your Transferrin Saturation% was. With haemochromatosis it is (male) >50.  If it is not, you may have hiferritinemia/iron overload from other causes.

If your dr does not want to do a genetic test, (and he should if your TS% is high), and you don't want to see another dr, try donating blood at the Blood Bank.  Without a therapeutic request from your dr, you can only donate every 3 months.

But you certainly need to put the pressure on a dr to find the cause for your problems.

Hi EQ............ I'm not from the UK, I'm from Canada. I have Polycithemia, which is almost the same as Hemochromatosis, except Poly, is not genetic, and my iron levels do not go through the roof. If your levels are that high...... go to the hosp, or a specialist and get a phlobotomy ( They drain a litre of blood form you and it lowers your red blood cell count)......... I know how uncomfortable you feel....tired all the time, eye's feel like they are going to pop out of your head.....etc etc. It is also potentially fatal. Doctors have just told me that I may have blood clots in my lungs as a result of the polycithemia. Hemo is just like Poly....... there is NO cure for it, but it is managable........ dont take any crap from doctors who don't know jack about your condition. It's your life my friend.... take charge of it, because they won't.