Iron avidity

Sheryl,

Thanks for sharing. I'm glad this has worked for you. That said, I don't understand why you think a 67 ferritin is a problem. That's so far from being high. Why would you think that a reading of 67 is driving your fatigue?

I find it interesting that you are correlating aspirin and reduced TS %. I was bled for 10 weeks in a row and my TS came down from 42% (borderline high) to 28% (normal). This was alongside ferritin coming down from 912 to 48. since phlebotomy worked for me, it's hard to grasp why TS% wouldn't react properly to venesection and that a drug (aspirin) is required. I don't read this anywhere else. Let me know if you are aware of any literature on this or whether this is anecdotal

Maybe it's something to do with the long-recognised medical fact that aspirin thins the blood? It may then allow the blood to move more freely?

My TS levels also rose during venesection, it is quite common, according to my consultant & things I've read. It did go down after a few venesections, though.

Feel as if I'm loading again, now, so we'll see on next blood test but I've been put on 3 monthly blood test then venesection only if levels rise which they hadn't last time.

No, in the normal scheme of things, 67 is not high - but it is for me.  3 months later if I did not venesect, it would be 92.  I get arrythmia and chest pains at 80.  It must be loading in my heart muscle.

My serum iron and ts% also increases considerably too. I have not come across any research about aspirin.  This is just what happened to me and I did not claim any different.  My original attempt was to thin my blood and make venesections less laborious.  The other results were a bonus.

If you don't have the same symptoms as I do, and many others do, then perhaps you would not comprehend.   100 mg Aspirin is deemed pretty harmless, in fact it is deemed quite beneficial for more than one health issue.

Yes, it is hard to grasp why TS% wouldn't react properly to venesection, and in the absence of any medical research on it, if we are suffering from these results, we search for answers.  Although it was not my haemotologist's idea (he is also a very good oncologist), he is surprised and very happy with the outcome.  It was purely my idea to try it as I know it is good for the elderly and good for heart issues.

And, as I said, I found I have to keep up those venesections every three months or I go backwards quickly.  However, as I have been having such good results, I am thinking of trying 3months and 1 week next time, and so on.  But going straight on to 4 months (pre aspirin), I found I was begging for a venesection at 3 months and 1 week the last time I tried to extend it.

If an extended time does not affect you, then do what is best for you.  I have been making notes of what level I feel best at and my optimal level is 34 and I got 13 good days before it all decended on me again (pre aspirin).  As I said, I think it is the high TS% that is causing the problem, and Prof Pierre Brissot confirmed that when he states that >75% is toxic.  That is how my body feels - toxic.

You have to remember that HH affects us all differently and what works for some does not work for others.

 

Sheryl, fair points. As I said, if it worked for you that's great. I personally wouldnt recommend this for other newbies. Frankly, this doesn't sound like HFE Hemochromatosis. If I were you I would do a more detailed DNA analysis to see if you have other types in addition to HFE. Your case sounds rare to me. Iron building takes years, which is why it's usually a problem in your 40's and 50's and not when you are young <18 years old. it's hard to even believe you are jumping from 30 to 90 ferritin in 6 months. something else may be contributing here (ferroportin disease or another type of hemochromatosis) years="" old.="" it's="" hard="" to="" even="" believe="" you="" are="" jumping="" from="" 30="" to="" 90="" ferritin="" in="" 6="" months.="" something="" else="" may="" be="" contributing="" here="" (ferroportin="" disease="" or="" another="" type="" of="" hemochromatosis)="">

Yes, that is possible.  HH researchers are suggesting there is another gene (they are still looking for it) that makes it worse for some people - mine is obviously aggressive.  But my gene tests definitely says I am homozygous C282Y.  My husband is homozygous H63D and since he has been deironed, his level does not rise anymore (but that was since he had Hodgkin's Lymphoma with chemo and radium treatments).

Our son, of course, could not miss out, he is compound heterozygous C282Y/H63D and his level of aggressiveness is less than mine and more than his father's.

I am quite involved in my country's haemochromatosis association and in contact with highly regarded internationally researchers, run a support group talking to lots of people about their experiences, so I have got to know a lot about HH.  I will be attending a conference this year, where Prof Pierre Brissot will be a key speaker, so hopefully I will get to talk to him.  If I find out anything, I will let you know.

The official alternative to treating iron avidity is to take iron supplements!  Well, if it works for you ... I would not touch it with a barge pole.

I think maybe a lot of my problems were caused by a delayed diagnosis of 9 years after an early hysterectomy.  Despite severe and (now known) obvious symptoms, my dr was in denial (and this was pre google).  I was finally diagnosed after one of my hips broke up from osteo-necrosis. I was told my blood was so thick with iron particles, it was blocking the finer capilliaries that feed the bone, and the bone died.  There's that thick blood again.  the other hip went the same way.  An elderly locum haemotologist told me the damage was done long ago, when I was undiagnosed.  I had chest pains for a year before diagnosis which dissipated with venesections

Nowadays, people are being diagnosed with HH when they are only heterozygous and have a poor lifestyle (eating too much sugar and starches, alcohol, etc. resulting in fatty liver which creates high ferritin), and then being told to not eat food high in iron.  So much ignorance.

And yes, I am sure there is something different that is causing my blood to be thick, black with iron, and no doubt misshapen, therefore clogging up the fine capilliaries.  I wish I could find an answer and more importantly, a resolution.  As for now, the aspirin is the only answer for me.

 

Which country are you are in and where is this conference? I'd like to consider going too.

There is a lab in the US in California. They do a full HH DNA test that includes HFE, Juvenile, Ferroportin, etc. it costs $475. You don't need a doctors script I don't believe. You should look into it as it may have answers for you. I did the test while in the process of de-ironing and it came back just with HFE (heterozygous C282y and H63D which I already knew before I took that test) but it helped me confirm there wasn't something else going on. I had such odd symptoms and so young I felt there was something else on top of HFE. I had tachycardia all the time and scary palpitations. It felt like I was dying. I was in the Hospital emergency room 5 times last year alone. Those symptoms have both gone away completely though after de-ironing so in hindsight I probably didn't need the test. Now I just donate blood every 2-3 months. It's healthy for other reasons, even though I don't think my iron is rising by that much every 2-3 months

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Hmm, I have reread my post and nowhere have I said I recommend it to anyone else.  Please do not misrepresent me.  I have outlined what my experience is/was only.

I have also found that Zach has stated on another post that he was TOLD to take aspirin.  A very bad misrepresentation.  This is a forum to describe experiences and results that others have had - good or bad.

If you have problems associated with haemochromatosis, you will find that HH is not as simple as described.  It is much more complex.  Some don't have problems and wonder what we are on about.  Drs, who don't have HH, have no idea because they have read only the simple version of HH.

Most do not have a problem with overly high TS%.  So what is it that causes the rest of us to do so?  That question has not been answered yet, and, I tell you, I have searched extensively for answers.

My haemotologist, although very skilled, is not a haemochromatologist, and does not know.  He says to continue as it provided good results.  He has tested everything that he does know - so it is out of his range of knowledge, as it is for most researchers.  So far I have found that only Prof Pierre Brissot has acknowledged it as being not good.

So if you find a solution, please share.

I note that your last post has been moderated - did you post an URL?  If so you have to find another way to describe it.

 

Google haemochromatosis australia for details regarding conference.  Different dna testing is probably available here via online.  Honestly, if my haemotologist had any suspicions of another gene (that is known about), he would test me for it.  I do not have symptoms nor blood results for ferroportin - quite the opposite, past juvenile stage too.  Descriptions of other known haemochromatosis types just do not stack up for me

If Australia is too far for you, there are often a number of conferences in Europe, and Ireland.  Probably England too, although they do not put much importance on HH, nor does Scotland.  Our Australian organisation president is now president of Haemochromatosis International - worth googling for details of conferences around the world.  There is an excellent HH researcher in Canada.  Prof Paul Adams.  I have met and talked to him too.  There are strong associations in Canada as well.  I am sure there are in the US too, in particular the Iron Disorders Institute.

Mildonium, the medication that Maria Sharipova was caned for, sounds like exactly what I need.  I have all the symptoms that Mildionium is deemed to fix.  I have searched, and there does not seem to be anything EXACTLY like it.  Others have some different outcomes.

Having searched this, I was led back to CFS again.  This was what I was originally diagnosed with decades ago but I told dr it is a symptom of something else, not a diagnosis.  So first time I looked at CFS for decades.  New info on CFS describes it as being caused by thick bent out of shape red blood cells (laymen's description) which clog up the finer capilliaries.  My MCVs are always High but am told it is ok.  I think I am going to have to lean on him a bit harder about it.  As everything seems to keep coming back to my thick black blood problem.

I am glad you donate blood regardless.  It is good for you as you say.  My husband cannot anymore because of his having had Hodgkins.

 

My MCV is also periodically high. I began taking B12 shots and it has partially corrected it. The high iron can cause absorption issues as well as destroy Instrinsic Factor production. You may benefit from B12 even if you are not at an extremely low range because the B12 you do have may not be able to be used correctly because of destroyed Intrinsic Factor.

Anything permanently resolve for you following de-ironing? Looking for that positive!

Also in response to your point that your symptoms and biochemical results don't mirror any of the other HH typical presentations, I believe you have to look at this in a binary way. Those who have just Ferroportin disease or other types may have one biochemical and clinical presentation and those who have both HFE and another type may present totally different. All research I see on the non-HFE types of HH seem to focus on those with just mutations in the other non-HFE genes and not patients who present with both. Given that this disease arose from ancestors who had to store iron to survive it is completely plausible that many of those who have one type of HH also could have another as it all arose for the same reason.

This is all theory and inconclusive of course but something to consider while troubleshooting reasons for your condition

It could be possible, as you say, but I have not come across any research that indicates that, and I have read extensively.  But, as discussed earlier, it is known there is another gene involved, just not proven yet.  Somewhere, some people are working on replicating hepcidin to replace ours which do not turn on to turn off the uptake of iron past our requirements (which is very little really).

It is not yet proven that our ancestors had to store iron to survive, same as the myth that it is from our Celtic ancestors.  So far, the oldest dna for HFE has been found in 5000 year old relics, 2500 years before any report of Celts in Europe.  This 5000 year old person's bones had features of the type originating from the middle east.  She also existed around the same time the pyramids were built.

Same as, it has now been proven no real Celts made it to Ireland.  There is no archeological evidence of Celts in Ireland, or Scotland, and England. People from Iberia (Spain) moved over to Ireland.  Many probably from the Pontiac Steppes (semi) originally.  Of course we pretty much all came from the same place, with a bit of Neanderthal, Denisovians and other hominids thrown in.

It is interesting to find that a lot of Spanish people and Portuguese have been found to have HH - not exactly considered Celts are they?  There are strong contigents of HH associations, research, and awareness campaigns in these two countries.

My money is on the Neanderthals as the originators of HH.  A lot of our health issues of today came from the Neanderthals, plus our fair skin and red hair, cancer, diabetes, psoriasis, Crohns Disease, to name just a few.  It is just another accident of nature, same as other genetic disorders.  From in breeding and a big mix of other hominids whose dna should not have associated intimately.  E.g. we did not NEED cystic fibrosis, did we.

The Irish adopted the Celtic culture in the early 1900's when the government of the day decided Ireland needed something to identify themselves with.  The Celtic myths are just that - myths adopted from the real ones in Europe.  Those in Scotland were Picts, and some 'Scots' from northern Ireland, would you believe.

There is iron in everything we eat, with the exception of cream, a couple of   cheeses made from cream and scotch whiskey and we cannot live on that.  If all we needed was iron to survive, all we had to do was stick our finger in the earth and lick it.  Of course, there are some with diseases that cause people to not absorb iron, and they exist even though haemochromotosis exists. There is a lot of mythology surrounding haemochromatosis and very quickly these days, it is being disproven.

But, that is another story but one I find fascinating, given the myths we were lead to believe.  A lot of books, research needs to be rewritten regarding the origin of HH.

 

Sheryl, you are a mine of information.  I am always fascinated by your posts.  Wish I lived in Australia :-)

Dear Sheryl

 I have just been diagnosed with compond heterozygote C28Y2 and H63D. My TS is high at 64% but ferritin is 90 within considered normal range. I have been feeling increasingly exhausted,depressed, foggy brain and pale...I have been vegeterian for a large part of my life and always thought I was slightly anemic - and occasionally took iron suplements - but that never helped. In addition, at night I wake up with pins and needles and or numb arms and feet, and my heart jumps around as well. When I had my blood taken I couldnt believe how dark and syrupy it looked and that made me think asprin may be a good idea!! I have taken 100mg and unbelievable no numbness at night, or heart thumping and my head is feeling clearer, and depressed feeling lifting and have alot more coulor in my face. The problem I have now is my Dr believes  that the haemochrosis is not causing my problems as ferritin is within normal range and believes I should be on antidepresants - and hence advises me against giving blood. Not really ideal without being monitored but was thinking I should just give blood anyway and see how I feel. I realise you are not a doctor but I feel that my blood is too thick and the iron is affecting me negatively.

Appreciate your thoughts.

Any thoughts greatly appreciated.  

Yes, I can only go by my experience, from others experience and what I have read and heard from researchers.

If you have been vegetarian for a large part of your life, your Vit B12 may be low.  It is a very essential vit B and can cause the problems you are experiencing as well if you don't have enough.  My husband suffered from depression, weakness, etc. for years - antidepressants had a bad affect on him.  Finally his dr thought of B12 - a blood test - then injections because although I had been giving him strong vit B tablets, he was not absorbing the B12 (this happens to some people).  After the 2nd weekly one, he came home humming, said hello to the neighbour whom he had been ignoring for years, got into his workshop and started working on something.  So he was on weekly for a while, then fortnightly, monthly, now every 3 months.  I can tell when he is due for another one.

My husband is also homozygous H63D (our son is compound hetero like you) as I am homozygous C282Y.

Vit D is also very important - if your blood levels are low - Vit D3 forte in drops work the best.  Tablets would not work for me.

Long ago I googled "thick black blood and iron overload" and really did not find much, or what I did find did not seem relevant to me.  Maybe there is something out there now.  Check it out and see if there is something there that relates to you, in case something else is going on.  It is good that the 100mg aspirin has had a good effect on you.  Drs, in general, think it is good for us in general anyway, unless we have some other problem.  It sounds like your circulation has got going with the thinned out blood.

A ferritin level of 90 is not considered high as your dr says, I wonder what your serum iron is?  It won't hurt you (generally) to donate blood every 3 months unless your Hb is less than 12.5 (125) prior to donating.  Go to a Blood Bank and don't mention the H word.  "Normal" people donate and they do not have high ferritin levels.  Keep a record of your donations, your Hb at the time, and also ask for copies of any blood tests from your dr.  I keep a spreadsheet of my venesections and blood tests and now ensure my Iron Studies are done a few days before my venesection.  My haemotologist now works with me on this.  Not every dr will do an IS every 3 months - mine used to be all over the place depending on when I saw him, but now I plan it properly and ask for an extra pathology request when I am not seeing my haemotologist frequent enough.

The 64% is indicative of your having haemochromatosis.  And it also means 64% of your serum iron can be absorbed by your organs.  It is very important for you to insist on being monitored regularly in case your ferritin starts rising.

And of course, menopause is a very dangerous time for females with haemochromatosis.  The symptoms are very similar and are often ignored because she is at menopause age.

As the dr is saying it is not haemochromatosis, ask him to look for what it is then, and tell him you don't want to take the antidepressants as a solution to something unknown.

Let us know how you go.

 

Dear Sheryl 

thank you for getting back to me so quickly. 

My B12 is 283pmol/L that is with taking high B12 suplements and my iron is 29umol/l. And yes Im now 52 and havent menstrated for 6 months.

Your thoughts are very helpful and yes it can't hurt to give blood and see how I feel then. Thank you again - stay well - you are a treasured resource.