Is all high blood iron levels HH
Posted , 2 users are following.
I am a 63 year old male and I was diagnosed with high iron level when I visited my GP because of excessive night sweats, at first all the tests were with regard to the night sweats and all came out as negative except the blood iron level which the hospital consultant described as unusually high but gave me no actual values.
However blood was taken and sent for testing for HH and the consultant (Endocrinologist) discharged me from the hospital as he said that if it was HH then I would be transferred to another hospital which dealt with this ailment.
After 6 weeks and having heard nothing I phoned my doctors practice and enquired about the HH test only to be told that no further action was required.
I am very confused and concerned with this as surely it is the high iron level that does the damage and not what it is called.
What should my next move be regarding this?
1 like, 3 replies
rubytuesday
Posted
Your next move if you haven't done so yet is to phone your Doctors surgery and ask if you could please have a copy of all your recent blood tests - including the Haemochromatosis test results - which you are allowed - in most surgery's they are doing this for anyone who asks. Tell them if it is convenient you will collect them later in the day or the next day.
The most important thing is to have the results in black and white on paper rather than asking for them verbally.
Once you have them and depending what it says on them - you need to make an appointment with your doctor to discuss the results.
If for instance you are confirmed as a carrier for haemochromatosis (I wish it was a shorter word!) then you should go to www.haemochromatosis.org.uk have a good read of their literature and then print off any you think will help when you go to see your doctor. It is a very good web-site and they are lovely kind people who will help and advise and answer any questions you may have.
Depending on what your iron level is will also be on those results.
Hopefully (if as you have been told that your level is high) your doctor should send you to see a specialist at your local hospital who will then start you on vene-sections. This is a very simple remedy which depending on your level you will go each week and the nurse will remove around 450 mls of blood and this will bring your level down - (just like being a blood donor) different hospitals have different schedules - but at least you will be then monitored.
One of the results you will get will tell you the analyses of the HFE gene and it will say what they are - this is important. Also if it says you are a carrier then any family members 18 years of age upwards should also be tested - this is what is so wrong when you have been told to forget about the tests as other people may also need to be tested.
On the otherhand you may be loading iron because of another reason but your doctor should still investigate why you have a high level .
Please don't give up until you have an answer - if it is haemochromatosis the sooner you can get started on vene-sections (blood removal) the sooner you will start to feel better.
I hope I have been of help. I would be very interested in the outcome?
Go get those results!
paulhawley
Posted
The receptionist just said that she had to have the approval of a doctor before I can have the results so hopefully I will be collecting them tomorrow afternoon.
I will keep you posted and once again thanks for your reply.
paulhawley
Posted
I obtained my last 3 blood test results and no mention of ferratin levels or anything to do with HH so I kept
my appointment with my GP and it was confirmed that I indeed have Haemochromatosis but my results had
gone to another doctor not been followed up.
I am slightly relieved in a way as now I could have an explanation for some of the ailments that I have
including arrhythmia for which I have been taking medication for about 5 years.
Thanks for your help and I will keep watching this forum for any useful information..