Irregular heatbeat?

Thank you so much for your reply.  I am very happy to hear that you are also are retired physician.  I live in Canada and I live in a small city. Whenever I go to the emergency room, we tend to be dismissed unless the patient is actually in immediate distress or dying.  When you say that you consider this to be an "immidiate" thing to do, do you mean that I should go to the emergency room this evening, or you mean having it checked within a couple of days?  I've been worried about strokes also because I also have a family history of heart conditions and strokes and I was told by the doctor at the walk-in clinic (the same who brought up the iron levels again) that I also had a test showing that I had very high cholesterol levels.  But that test was dating back from 2010!!!  I was never told by my old doctor about the cholesterol levels and that I needed to make life style changes, so although I am 5'4 and 127 pounds, I don't exercice much at all, and my diet is not great.  I do eat good foods on a regular basis, but I also eat an enormous amount of sugar and I do eat fatty foods too.  I stopped all of that a couple of weeks ago when I was told by that doctor about the old cholesterol levels, but it might be too little too late.

I suppose that I just want to know what kind of tests they should be running if I go in to the emergency room this evening?  Can they find out if I am at high risk for a stroke based on tests they could run right away?  And what could they do to prevent this from happening?  Are there treatments that could be administered at that point?

I am sorry for all the questions.  I just don't want to jeopordize my health if it can be something that is preventable.  I have two young kids at home and I just can't risk my health that way.

Thank you in advance, it is very much appreciated.

Melanie

How wonderful it is to get some perspective from a physician who has hemochromatosis.  It is quite different from a gp who does not and often still believes in the myths, or thinks hemochromatosis is nothing to worry about, and that the complications from it are from something else which they then don't investigate.

Hemochromatosis is not a big deal if we are diagnosed and treated early.  Delay diagnosis and our health often ends up in ruins.

After a hysterectomy, I started feeling just awful all the time, the fatigue causing staggering and slurring, full body pain, particularly one hip, my left side chest pain (it felt like my heart was swelling and heavy).  An angiogram showed nothing - of course it would, the problem is in the clogged finer capilliaries and cells not the arteries.

Despite my having ferritin levels of 800+ (I found some old records that I was not told about), and despite the fact that I was donating blood every 3 months without knowing I had this disorder, I was not diagnosed till 9 years after the onset of symptoms when one of my hips broke up from osteo necrosis.  It was described that my blood was so thick with iron particles that it was blocking the finer capilliaries that feed the bone, so the bone died and broke up.  I ended up having both hips replaced - the 2nd one being a botched job that stuffed up my ability to mobilise properly, and even sit and lie down without pain.

On diagnosis and treatment, the year google became available, so I could educate myself about this disorder, the left side chest pain dissipated over time with each venesection.  Whenever my ferritin level went up again for whatever reason, the chest pain returned.

Later I was found to have arrythmia, but the medication (a beta blocker), caused my brain to become so foggy, I lost the ability to put more than 2 words together, my brain was not talking to my bladder so I was constantly wetting myself, I forgot where I was going when driving to the dr, tried again, and forgot how to get there, and finally realised I could not understand traffic lights, so I went home and have not driven since.

I believe the beta blockers dilated the blood vessels leading to the brain and let the iron particles in.  It took years for my articulation to come back, and even now I still have problems getting the word from my 'thinking' to my tongue.  As I had a very high IQ (I had been professionally tested a few times), it is difficult to now sound this way.

How the complications keep going.  Years after being 'deironed', I did have the opportunity to have an MRI of the heart which showed no iron deposits.  I still get arrythmia.  The heart specialist said the only thing I can do, even if iron deposits had been found, was to keep having venesections - they can't cut it out, or drain it out.  Wise words really in the scheme of things.

Of course, I must keep having those venesections every 3 months.  Later than that causes an immediate rise in my levels, complete with chest pain.  I still have serious fatigue and body pain (bone/muscles).  Walking, sitting, lieing down is still painful from the botched hip replacement (and no other reputable surgeon wants to touch it).

I had to give up my loved job many years ago as I could not continue.  The only relief now is because I am not working.  However, going to doctors and hospitals seems to have become a part time job.  I have just had my third type of cancer removed too.

I have been to two hemochromatosis conferences, and spoken to many researchers.  Most hemochromatosis researchers are gastroenterologists (and my liver is good), but there are some who research the effects of iron overload on the brain (they know it happens but are unable to replicate it with mice in a lab), and arthritis.  Gps generally dismiss these.  There seems to be no real answers to abdominal pain (apart from the obvious liver problems).  And no answers to the contuinuing fatigue problem.

For the record, and this is important as each HFE gene can be different, I am homozygous C282Y, my husband is homozygous H63D so it has hardly effected him and he has been deironed with not much increase in his ferritin levels anymore, except that he got Hodgkin's Lymphoma, and our son is compound heterozygous C282Y/H63D which, if we managed to have more children, they would have all been the same.

So thank you Lynn for responding to this forum.  It is very much appreciated.

Good evening Sheryl,

Wow... I am really sorry to hear about all you've gone through over the years and are still going through. I am still waiting on the results of the latest blood tests that were done just yesterday morning so I don't have any information yet on the specifics regarding the gene. Actually, it's just since reading the posts on this forum this evening that I've noticed that people are referring to very specific names for those genes as well as specific levels of "ferritin". Al I know and all I was told so far is very general in nature... simply that "my iron levels are really high". I'm wondering however if the level that was given to me is the same thing as ferritin...? Since a lot of the posts are referring to levels in the hundreds and sometimes even in the thousands! If it can get that high without someone having serious problems way before it gets to those levels, could it just be that the levels that were given to me are not the ferritin? I suppose it's a little bit like cholesterol readings here in Canada versus the numbers in the States. Here they go by 2 to 4 or 5 (not very familiar with that either) but I know that in the States, based on the reading I did on the subject, it is numbers in the hundreds. Just curious if it could be a similar situation.

As for the clogged finer capillaries, what kind of test did you take for them to be able to see that? I've had chest pain also, and I have talked to a doctor about it last summer. But because I am still "young", no one would take me seriously. I did request after a while to get my heart checked and I have an appointment to go for a stress test cardiogram. The one you have to run on the threadmill while being plugged to the machine. But the test is just on January 20th. And I'm not even sure if that type of test would be the correct one to detect what you have.

I decided to come to the emergency room after reading Lynn's reply to my original post. I'm in the waiting room now and while I'm waiting, they plugged me on this little machine that will check for heart palpitations. I just hope that I get some during the time I'm waiting so they can confirm it too. So far, there's nothing though.

It's probably going to be a full night of waiting to see the doctor since the waiting room is full and they are not known to be quick at this hospital...

Anyway, I want to wish you good luck with your situation and with the cancer scares through all of this too. I really feel for you. Sending you good vibes... And thank you for sharing your story. It was eye opening to say the least.

Mel

Hi Mel

I hope you are finished at ER - the place sucks up hours of one's life.

One of the most important thing I tell people is to ask for print outs of your test results.  That way you can see what they are talking about.  Then you would be able to know if it is the ferritin levels that they are talking about - which is what it should be.  Serum iron may be high but does not tell the story.  The other factor that is a marker for hemochromatosis is transferrin saturation % - if it is >45 (female) it is a good indicator for hemochromatosis.  If your ferritin is >120 if you are still menstruating, or >300 if post menopausal, that is the other sign.  However, high ferritins can have other causes, especially if it is not accompanied by a high TS%.

I did not have a test to indicate that clogged finer capilliaries of the heart.  The cardiologists at the time did not know I had hemochromatosis.  I know that that is what it does from my avascular necrosis experience.  Also from reading medical research studies, autopsies, etc. it has been found that the sharp pieces of iron (it is a hard piece of mineral) cuts through the cells on their way in, and cuts through again on their way out (from venesection) causing scar tissue.

So far the only test that can see if you have iron deposits is a special MRI which I had to pay for.  It was done after I was deironed, so therefore there is no proof I had deposited in my heart.  And, that is when I was given that wisest bit of advice.

I have also had a pituitary gland tumour which caused excess prolactin which caused havoc with my oestrogen (it made it ineffective for 6 years (of hell!)).  The iron does get into the hypothalamus which is just above the pituitary gland.  And I have a lot of other problems that can be caused by my hemochromatosis - there is no other explanation.  All because of delayed diagnosis and treatment.  So it is very important for you to be assertive about this.

Hemochromatosis is a hormone thief too because it affects the hypothalamus and pituitary gland early.  These glands control our hormones and it is all very sneeky.

MRIs have shown iron deposits in the brain, as well as autopsies.  But the medical profession still denies it because it has not been successfully replicated as I explained above.  There is not a lot of money available for research because there are no drugs involved in the treatment of hemochromatosis - only the complications from it.

Ferritin and TS% level readings seem to be generic around the world.  Hb is often expressed differently.  Like mine is about 165, which could be read as 16.5 in another country.

Your heart stress test will indicate if you tire easily which could indicate that your heart is under stress (enlarged, etc.) from hemochromatosis.  I was never offered one.  I would not survive more than a couple of steps anyway.    I tire easily but whatever tests I have had do not indicate an enlarged heart.  Nothing seems to show up what I feel.  I am quite slim, not overweight which would be an excuse for it all.

Ask for copies of all past test results, so you can educate yourself and advocate for yourself.

Let us know what you find out.  It helps us all as well as yourself.