Adjusting to Haemochromatosis

Allergies, blood and immune system
1

First of all I would like to say a massive 'ThankYou' to everyone on this forum for being there with your own stories and posting such a lot of good, solid advice about this metabolic disorder, Haemochromatosis. Like so many people, I had never even heard of iron overload before. Reading all these posts whilst I waited for my diagnosis taught me so much and kept me sane.

For many years I kept going back to the doctors surgery with unexplained fatigue, weakness, abdominal pains, stiff painful knees, feet and wrists, sleepless nights, restless leg syndrome with intermittant calf cramps, even broken - split finger nails and broken hair. Most of which I thought must be due to the menopause.

Then last summer a locum doctor took a keen interest in all my symptoms, especially the peeling, torn finger nails and broken hair. Initial blood tests ruled out thyroid issues, then in September she telephoned me to say I had elevated SF and TS and I needed to repeat those blood test in a fasting state.  She then telephoned me again to say that I definitely had iron over load and that I needed a genetic blood test  for Haemochromatosis, the first time I had ever heard the word.  

In January of this year I met with an haematologist at the local hospital who confirmed that I do indeed have Haemochromatosis with two mutated copies of c282y. My Serum Ferritin was 402 and my Transferrin Saturation was 69%.  So far I have had 4 phlebotomies (4 weekly) at my local hospital and I have 3 more phlebs booked.  My SF is now 204 and my TS is 77%.  It all seems pretty straight forward compared to some of you and I do I realize how lucky I am.  But I would like to know if this overwhelming exhaustion and tiredness, caused by the phlebotomies I assume, ever improves?  As I am totally whacked out, some days I can't even get dressed nor hardly move and I'm wondering if I should cancel my next due phlebotomy?  

 

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Hi Chris

Welcome to our forum.

I would ask the nurse the next time you go for venesection what your haemoglobin level is and tell him or her how you feel the next day.  Maybe it is dropping causing you to be very tired.  The nurses should check your hb before they begin the venesection.  Most hospitals will venesect you until you reach 11.0 or 110.  The last hospital that I attended before moving house would not do a venesection if I went below that because of the side effects that you mention.  Also, they will not venesect if you are feeling unwell.

I only have 350ml taken out and I feel tired the next day but not excessively so.  It is as the day wears on that I begin to feel tired but I feel fine in the morning.

I hope this helps.

Best wishes

Marie

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We, with HH, generally recover our red cells (Hb) very quickly.  You had the fatigue and weakness before you started phlebotomies.  But, by all means try to get your Hb checked just to eliminate that problem.  Just ask them if they could do it beforehand - afterall it is just a little machine and a finger prick that can do it.  I am venesected at the Oncology ward of a hospital and they never check Hb beforehand - they just go by dr's orders.  Blood banks and pathologies do Hb first.  When I did go to Blood Bank, one time my Hb was OVER their limit and they would not venesect me - heck, that was why I was there!  I found them too undependable.

Also sometimes four attempts have to be made to get blood out of me, and Blood Bank and pathologists won't do that, and send me away.

I am disappointed to find that 12 years after getting my SF down to my teens that I still suffer from overwhelming fatigue and bodypain.  The last year or so I have discovered that I have about 13 good days after phelb then the fatigue and bodypain descends till I have another one.

Not the same for everyone, so live in hope.  I have noticed that those who have had a dose of glandular fever at some time in their lives suffer most.

Never (except for being hit by a bus) cancel your phlebs as it is important to get that iron out of your organs.  You would have read all the tips about eating and drinking beforehand.  Try coconut water too.  Avoid sugars and starchy carbs, we don't digest them very well and will make us more tired.  I found that even the act of eating and digesting would exhaust me.

I am looking at my spreadsheet of blood levels (always ask for a copy), and during the weekly period, my Hb ranged from 130-151.  These Hb results were taken from a Complete Blood Count which is a separate blood test and does not include SF and TS% etc.  This test was done monthly during that period, so it was not considered necessary pre phleb.

Since my venesection 3 months ago, I was so fed up with my blood being so black and thick and difficult to venesect, and with no medical person coming up with a solution (including my haemotologist) I decided to take a daily aspirin (100mg).  Within less than a week, I felt lighter, walked faster, body pain lifted, and could manage to do more in the day.  I still have to go to bed very early 'cause my body has had enough.  If that was all it takes then I have wasted years of my life.  Sometimes I can extend my bedtime, and but mostly I have to crash early.  I hope that I can gradually extend that further.

Of course, it does not help that I am forcing myself to go to the gym to try to restrengthen my muscles so that I don't end up in a wheelchair.  Those are the worst days now.

No wonder I felt so bad with that thick black gunk in my veins.  So while my SF is kept very low, my Serum Iron is still very high (i.e. the iron circulating in my veins).   I used to say I felt like I had lead in my veins in the 9 years before I was diagnosed - I was not far wrong.

So you just have to keep forcing yourself till it gets better.  Remember, it is better than having chemo (which is what I kept telling myself).  When you have venesections in an Oncology Day Unit, you see those poor people having their chemo.

Good luck with it all.

PS: Pull down the rims of your eyes and if the flesh behind them are white, that is an indication of low Hb.

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Is extremely dark thick blood a symptom?  I haven't read that anywhere.  I have often commented to the girls taking blood that mine looks black. 

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Only know by personal experience that it is a sign.  Not everyone complains of same though.  Nurses having trouble taking my blood say it is indicative of the high iron in my blood, not that they know much about HH, but I guess they see it in other people.

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Sunni, check out following:  We are not alone

http://www.dailystrength.org/c/Hemochromatosis/forum/11085312-thick-sticky-blood

 

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Just got back from the Dr's.. blood still almost black. and now so is my arm...

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I have been going to the doctor for the past 6 years since my hysterectomy with most of the symptoms of HH and have always had them blamed on other things. Low Iron (at one point I was perscribed iron pills.  Everytime I took one they made me sick to my stomach), pre menapausal, obesity (short and a little chunky), Arthritis, depression, and the list goes on and on.  I goggled high Iron in women and when HH came up and I noted all the symptoms It was definitely an AH HA momment.  Since then I've been trying to get the testing done but have been given the run around by my previous doctor (as of last week).  I went and had the testing in December and as far as the doctor could tell the results were either never received or was misplaced.  I live in rural Newfoundland, Canada and our health care system is the pits and it wouldn't surprise me in the least if they got lost. Now I have a new doctor who has done further bloodwork and if Levels are still high he is going to re do the DNA testing.  He actually knew what I was talking about. (he's not from Newfoundland)  I know my ferritin levels are low compared to some people on here (mines only 277) but the correlation of symptoms is unbelievable.  I'm so glad I found a community who understands!