I'm sure the answer to my question is already in the existing discussion forums, but I am a new member and trying to weed through the process. After one year, two liver biopsies, three doctors, a CT and over a dozen labs, I was finally diagnosed with HH about a month ago. My third phlebotomy was yesterday, but the "rules" are confusing me... One doctor says that I have to give until my ferritin level is 50, while the blood services office says that my hemoglobin level is far more telling than the ferritin. Can someone explain that to me? If my hemoglobin is low but my ferritin level does not decrease, what does this mean for my future? Also, the intake nurse at blood services says that most people feel great after giving - that they have more energy, can breathe better, etc. However, after my third, I felt like I had been hit by a bus. I haven't really talked to anyone about this and I'm just so lost.
Hi Jan
My consultant says he wants my ferritin levels down to 50,I started
At 1130 now down to 661 a way to go yet???
I have had 6 weekly venesections to date and have got gradually worse
I am tired all the time, lightheaded, aches and pains, I seen the consultant
Last Friday and he has changed me to fortnightly venesections.
I hope I start to feel better so I can return to the gym and exercise
I am 66 so yes age can affect us???
I assume what they are actually saying we will feel better once our
Iron levels are at the required level, and venesection have stopped
(Apart from donating blood 4 or 5 times a year)
Then we will start to feel better. Hopefully???👍👍👍👍
Cheers philx
I gave blood for the first time yesterday. I felt fine after it except for the fact that I got the chills while driving home. I'm standing by here to find out the answer to Jan's questions. I don't know the answer. So confusing.
In another discussion 12 days ago, zach76568 said: "Yep, at the beginning it will not drop a lot because your body is rushing to refill iron." I think the iron is being released from your other tissues where it has been stored?
Hi dawn
Mike told me weeks ago his drop some weeks 100.of 40.or 10
Mine has done exactly that first 2 weeks 100. Then 3 weeks at 45
Then last week only 10,and as you rightly say each venesection
Draws the iron away from our organs, at the moment I am showing
No damage to any organs, but I am not going to get complacent
Good luck to all,hope we all get a satisfactor outcome.
We should all count our blessings, no matter how slow our levels drop.
Spare a thought for poor Glyn for what ever reason, his rise instead
Of falling
Cheers philx
Hi, Ferritin and hemoglobin are two different things. If your hemoglobin is too low, you can feel fatigued etc. (symptoms similar to HH). Prior to having your blood drawn, you should be tested for ferritin and hemoglobin levels. If hemoglobin levels are too loo, you may want to take a week or so off for your blood to replenish. I found in many cases when I had taken a couple weeks off, my ferritin reduced greater than when going once weekly. As you know, we are all different, but believe the goals are the same--get the ferratin reduced to 50 and maintain the hemoglobin so you don't become anemic.
Good luck
Mrs. Z - Thank you for your response... if you don't mind my picking your brain a little further... my phlebotomist only takes hemoglobin levels prior to each one - and (1) it is supposed to be over 11.0 and (2) I have been told three times that "hemoglobin levels are the same as iron levels." Perhaps I'm just missing something because I don't understand how the ferritin levels remain so high if the hemoglobin is so low. I don't have a lab request for another few weeks to test the ferritin levels... I'm just trying to understand what is going on. I'm exhausted and out of breath... and have yet to get a straight answer from any health professional. So frustrating.
Hopefully indeed and thank you for your response. Like you, I am exhausted and have muscle and joint pains that resemble the flu. I read once that the bone marrow goes into overdrive trying to produce new red blood cells - is this true to your knowledge? How do you cope with the fatigue and pain? I hope you are right that they mean that we feel better once the ferritin levels drop. Because I certainly don't yet!
I'm with you... I got the chills after my third phlebotomy - and I live in muggy Florida. Wasn't expecting that one. Please keep me posted as to how you're doing!!
Could you clarify what your consultant said about the iron being drawn out of the organs? I have had damage to the liver, pancreas and adrenals according to my hematologist. And that's just what they've found so far. Does the iron actually leach from the affected organs as the levels in the blood drop?
Are you in the UK? I'm in US - Not sure if that makes a difference. But my routine was to go weekly for blood draws and prior to going I would have blood tests for ferratin and a CBC which shows all blood levels having to do with hemoglobin etc. They would call me ahead of time if the ferratin reached the target meaning I didn't have to have a blood draw. Now on the 3 month program, prior to seeing the Dr., I will have the ferratin, CBC and CMP blood work. We have a system where we can see the results of our blood work, so I can always tell where I'm at.
Hope this helps. If you need anything else, let me know.
Hi mrs.z
I'm in Birmingham England don't know about everyone else.I have
A blood sample taken whilst I am having weekly venesection.
2 days later I can check the levels on the hospital website,
But strangely the hemaglobin levels is not added??.
My own doctor is going to check this to see if it's this that is making
Me feel tired-aches and pains-lightheaded
I am awaiting this result
Cheers Philx
I'm in the US as well. I only recently met with a hemotologist (thank god) as everything prior was through a GI physician who had only one other patient with HH! Everyone told me that I would be tested for everything prior to giving - but it's only for hemoglobin. How did you feel when you were going through phlebotomy? And how long did you go through it?
Hi Jan
That's what I am led to believe, the iron build up in our bodies,attaches
Itself to our organs (I believe this is what causes damage to our organs)
Every venesection we have draws it away from our organs to try and
Prevent damage, but if any of the organs are already damaged this
Has to be dealt with by respective doctors for that particular organ??
Please check all of this I am only going on what I was told??
Cheers philx
I was diagnosed at the end of Oct. last year -- had the three tests (ferratin, transferrin and genetic tests. When tested positive for hemochromatosis with a ferratin level of almost 1,000, was referred to hemotologist. I started my phlebotomies within a week and started on a weekly basis, but due to scheduled trips etc. did not keep on the weekly program. By the end of February of 2016 I reached the goal (41). I believe I had 16-17 phlebotomies and am not on the maintenance program. Hopefully, you'll have better luck when you meet with the hemotologist -- I LOVE, LOVE my Dr. Good luck.
The only time I had those feelings was when after several blood draws, and saw the results of my hemoglobin which was lower than normal. At that time the Dr. postponed the next blood draw giving my blood a chance to rebuild. I think that's why it's important to be checking the ferratin and hemoglobin. I was told that the blood draws can cause anemia. Hopefully your results will make sense
Not all haemochromatosis is equal. What are your HFE mutations? What is your TS%? The answers to those questions may be revealing. What ferritin level are you coming from?
True haemochromatosis can replace red blood cells very quickly and you would not have a haemoglobin problem. Haemoglobin and iron are NOT the same thing.
If you are having venesections weekly, your haemoglobin may find it difficult to keep up, it depends on your genetic results too, and you may be being overbled.
Contact your country's haemochromatosis association and get as much information from them. Look at their website too. Educating yourself about this disorder is very important.
Hi all, new to this site and fairly recently diagnosed despite all my family having gh. I won't get into that right now, gp's in the UK are something else!
I've had about 8 venesections now and levels are down from 650 to around 250, all good! That said the last few days I've been feeling so light headed, dizzy, out of breath etc.... my skin colour is OK one min and then really pale the next. Just don't feel right, has anyone else experienced this? Could it be too much blood off, I look enemic.... although sure they'd love some of my blood.... lol
Any experiences, this would be appreciated.
Regards to all, Mark
Hi mark
Welcome to the group, as soon as I started v/sections I started to
Feel lightheaded, tired,aches and pains and occasional dizziness
I've had 8 v/sections I started at at 1130 but by the time I had my
First venesection it had risen to 1433 now it's down to 834.
Yes the medical profession are very clueless of our condition???
My opinion this iron has been comfortable attached to our organs
For years now it been drawn away from these organs,plus blood
Extracted on a regular basis, it's no wonder our bodies react??
Be kind to your body till the transition is complete don't overdo it
Cheers philx
Hi philx,
Thank you for the response and indeed the welcome.
It is a comfort having people in the and boat....
At first everything was fine and my chest pains, stomach aches etc all eased which was great. It's only the last week I've had this paleness, short of breath, aches and wondered if anyone had similar experiences and what they done.
I'm in agreement, doctors seem to know little or nothing about it.... seems crazy in this day and age.
Thank again
Mark