Son had a mini stroke

Hi thank you for your reply, yes my son was diagnosed before me, he was diagnosed about 25 years ago,he is an identical twin so they both have it, they only found out because i saw an article in a magazine about people thinking they were anaemic because they were so tired and i suggested they went for a blood test,

Neither of them go as often as they should for venesections, amd i warned them more than once that it would catch up with them, but the one who had the stroke is the worst, he has no transport at the moment and has to walk to the hospital ,or get a bus, but he also starts work at 5am [hes a baker] so sometimes too tired he says, plus it took several attempts to get b;ood a few times and he just gave up, when he saw the stroke Dr,she was shocked that he was on no medication for the thick blood,or sticky blood as she called it,he was given a prescription for some tablets [cant remember the name, buut will find it, similiar to aspirin, ,he does have high hemoglobin

I only discovered i had HH after the menopause,i was rasted before but came back negative, but i really have no symptoms and rarely need venesections

Hi Sheryl thanks for your reply, have said about most things in above post, but im sorry to hear you had to go through having both hips replaced, where are you located? i am in England so that would have been free on the NHS ,just wondering if you were not if you had to pay for it,

I am not sure what my TS% would be, i amgoing to ask for a run down of my results the next time i see my consultant, which should be about April, my sons had a genetic test so did i, but not sure where the HH came from, as i thought both parents ha to have it or be carriers, my ex their father says he doesnt have it,

Also my mother lived to 96 with no illnesses all her life, and not on any meds for anything, neither am i, never knew my real father so no idea about him, i will find out the name of the meds my son is now on and let you know

Carriers (i.e. one HFE gene only) should not have any symptoms so they are not likely to be given a gene test.  Your ex probably just had an iron test in response to your son's results, and it was normal, so dr would have told him he does not have it.  A genetic test should have revealed him to be a carrier at least.

And I am assuming you have been genetically tested and found to have it.

I have found some carriers to be the most long lived of all.  My mother is a carrier and despite how she has abused her body, she hangs in there better than I.

I am in Australia, and because I have private health insurance, I had to pay for them.  Despite the health insurance which pays for the hospital, a lot of the drs fees were out-of-pocket.  I would have waited a long time to get public hospital surgery.

Just rereading your info.  As true haemochromatosis, is genetic, the genes always exist if you have them.  They cannot be negative one test and positive the next.  But you may be talking about your Iron Studies, they may have been low before menopause, then high afterwards when you stopped menstruating.

It is pretty disastrous to end up having a stroke because of haemochromatosis.  It highlights how important it is to be treated and you son has found out the hard way.  We have to educate ourselves, and be proactive.  Ask for copies of your blood test results, and you will be able to self evaluate and make sure you are getting the right treatment.

 

I did have a gene test, not sure how that works unless parents were tested too,which obviously they werent, i was tested for HH at around 50 just starting the menopause, and told i didnt have it, then about 12 years ago went to the Dr as i thought my hair was thinnning it worried me as both my mother and her mother were almost bald on top, my Dr was shocked to find ihad HH as he thought thyroid or anaemia, my exes Dr at first refused to test him saying it was unlikely as it was very rare, Drs didnt know much about it then ,and he was told he had a fatty liver thats all, so i dont really know for sure if he was tested again,he said he was, when my sons were diagnosed they were told their life expectancy wasnt very long, now we are told its normal life expectncy, and as i said my mother was 96, and her mother 90,

The tablets my son was given ae called Clopidogrel,

I hope he can change his lifestyle though ,he drinks too much and smokes a lot, but he has done this only in the last few years,he was stabbed by an ex of his then girlfriend, while he was asleep,at her house,[the man broke in and he hasnt been the same since

We are lucky at tghe moment we have free healthcare, well paid for by national insurance,but this Government are privatising it bit by bit

 

It is the genes you carry - your parents do not have to be tested to find the genes you carry.  What were the HH genes you were told you have 2nd time around.

HH cannot be confirmed without that genetic test.  Just having high ferritin does not confirm HH.  That is what I am trying to establish.

If your first gene test indicated that you did not have HH (but you have to be a carrier of one gene at least if your son have been confirmed by genetic testing), unless they stuffed up your first test.

Drs can be so stupid about HH, and then they confuse their patients.

 

I dont think the first test was a gene test,it was just a blood test done at the Drs surgery, when the second blood test came back my GP dsaid you have Hemochomatosis, and then i was referred to the hospital, where i had a gene test, my ferritin by the way from first blood test was 995, i was shocked,but another Dr i saw at the hospital, not actually connected with the department dealing with HH said he didnt think i had it as he said i dont have the usual symptoms,and he seen others who did have it

My consultant at the hospital actually discharged me and said he didnt need to see me again, unless blood tests showed differently,

Last year one of my blood tests came back with a spike in liver readings,and my own Dr said it could mean i had Cirrhosis ,i went into a panic, couldnt understand it,when i had recently been discharged by my consultant at the hospital, anyway i was referred back to the hospital, had scans and colonoscopy and even an MRI , and my consultant said he couldnt understand why my Dr had even said that, he said you do get spikes sometimes it can mean nothing,

Drs dont really know much about it .

Cant remember what the genes i have were, i will have a look to see if i have anything with them on, if not i will ask when i go again in April,

Knowing the genes is important because they are different in terms of aggressiveness.  Also what your TS% is.

There is plenty to know about HH but many drs are in denial of it, or cannot be bothered.  It is important to educate yourself and go armed with information about it to your dr.  Have you contacted or looked at your country's haemochromatosis association website.  They will send info to you, and ask for copies for your sons.  It is important that they or the one not complying know lots about it in order to be proactive.  The son you mentioned, with his high alcohol intake, could end up with cirrhosis or worse without proper treatment.  He should not rely on drs making him do it, he has to take charge himself.

Also, ask your HH society if there is a support group near you (and your sons) where they can meet up with people with HH and get ideas on how to deal with HH.  It is very important to ask for copies of your blood tests each time so you can learn about your particular situation and self-evaluate.

Let us know when you get the gene info and other results, e.g. TS%.

 

Thanks for your replies and info, i never get copies of blood tests,i have one from a couple of years ago i think and its the only one,

I have warned both sons about their drinking,their father is a heavy drinker too, i dont drink at all, possibly a glass of wine on special occasions, but rarely drink it all, not keen on wine, both sons drink wine,

I have another son and daughter from a previous marriage, they have both been tested, my daughters came back negative, but shes still menstruating, and my son was told he has it, but he lives in Spain now and when he had to have an operation there they told him his blood was normal, i doubt he will have it with a different father, his ferritin here could have maybe been high with alcohol,,he was a heavy drinker,but calmed down after his operation as i think it frightened him,he had appendicitis plus a huge abbcess,which could have burst at any time,as he wouldnt go to the Drs at first ,but had to eventually a the pain was so bad,he was sent straight to hospital