Iron avidity

As iron avidity is described as:

"Iron avidity is an iron disorder where the transfer- rin-iron saturation percentage (TS%) remains elevated while the serum fer- ritin (SF) is within normal or below normal range. Ideally, TS% should be below 45%; SF should be within the ideal range of 50-150ng/mL."

Then just about all of us who are being successfully treated, are experiencing iron avidity, for years.  It is common amongst those with treated haemochromatosis.

At a recent conference, Prof Pierre Brissot, described TS% as being the last measure to reduce, long after ferritin levels have decreased, especially for those who are homozygous C282Y.

As I described somewhere above, my TS% did not decrease until after commencing taking 100mg aspirin per day, and continuing to have venesections even though my ferritin was less than 30.  It is going to be different for everyone.  It is trial and error unfortunately.

On the Iron Disorders Institute website there is an article about it.  When I last looked, someone was suggesting taking iron supplements which I would not do.  If you want to increase iron intake, take vit C tablets with meals.

Otherwise, it may not be considered a problem - just part of the process.  No dr, haemotologist, researcher, etc that I have spoken to, even uses the term "iron avidity".  I think it is a misleading term, making it sound like something bad.   Maybe sometime in the future, someone will decide it is bad, but hopefully by then, there will be other answers, e.g. hepcidin replacement (which already exists but not in a form that is satisfactory for us), or stem cell repair.  For now, this is what we have got.

Maybe try a haemotologist instead of a gastroenterologist, unless you actually have liver problems for, perhaps, a different perspective.

 

Hi Sheryl - thought you may be interested in my progress.

After donating blood my iron saturation % went from 64% to 45%!!

 Ferritin from 90 - 52. However when giving blood it took a long time and the machine kept beeping - they said I was dehydrated - but I am an avid water drinker of 1.5 - 2 litres a day and even go to a spring to collect water! I had stopped taking aspirin for blood donation. Back on asprin now! Like you blood viscosity seems to be a problem - I have just started PEMF - Pulsed Electro Magnetic Thearpy - I have only had one session so far but the next day I looked and felt about 30 years younger. They have worked successfully with people with haemochromatosis before. You can google it on youtube. I will keep you posted on developments - one time obviously isnt enough to say out and out it is a sucess. I have switched doctors to one who works across traditional and intergrative medicine - he has also put me on DHEA. 

All the best.

That is really interesting. I shall look out for that treatment - sounds like a mini miracle! Thank you for sharing :-)

Interesting machine they had you hooked up to that could tell you were dehydrated.   I have not encounted one of them yet.  The results from your donation are good.  Keep it going.

I also had to google PEMT, as I had not heard of it.  I have used a mattress cover  embedded with magnets for many years.  If I forgot how good it was, I soon experienced how bad it was like when I went on holidays without it.  I could barely get out of bed - my body was so stiff and painful.

I don't think PEMT is used by anyone where I live.  I never see it advertised.  What equipment does your therapist use?  A whole body mat, or smaller patches put on specific parts of the body?  The whole body mat sounds good to me - I want whole body treatment.

On the subject of DHEA, I am trying the precursor of that which is pregnenolone.  The precursor of pregnenolone is the good cholesterol (I get which is which mixed up).  My gp, backed up by research that I have found, says to increase my good cholesterol by consuming good fats and avocado, etc.  Have been doing that for years but not a lot happening.

Keep me posted on the PEMT too.  I hope it is a success.  I am looking forward to when we can have stem cell therapy for haemochromatosis.

 

Update PEMT - hi Sheryl - PEMT seems to hold blood viscosity for a day and don't need asprin. It may be a permant solution - dont know - the machine is $5000 and treatment is a dollar a minute. So am back on asprin for the moment.

Also I have had a terrible time I think with some mussels I ate - I know they are high in iron but I didnt know how high. The following day I had lower intestine pain and back to extreme exhaustion and feeling poisoned. Is there such a thing as blood iron spikes that can send the body into temporary crisis?

Interested in your thoughts.

With thanks Michelle

 

Shell (my bf calls me Shel too) - very interesting about mussels.  We are told not to eat raw oysters because of the possibility of a particular bacteria which my brain cannot remember and I was brought up eating oysters growing wild that we collected ourselves.

As I live in the tropics I had not come across mussels much, and always chose oysters anyway.  Then I visited a southern (cold) area and mussels were on the menu.  Boy, were they delicious.  Small black ones they were.

Then I visited France and ate small black mussels all over the country.  Back in Australia, in the tropics, I bought some mixed marinara and I was so violently ill, I thought I would end up in hospital.  Bad one? which would contaminate the lot, but my husband ate it too and no problem.

Tried it 2 more times, same reaction.  Just one in a dish of pasta and scallops, and I was violently ill all night until my stomach was emptied.  I found I could eat all the other seafood bought separately that were in the marinara, but not the mussel (and they were large NZ mussels).

So, are they higher in iron than the small black mussels or is it something else?  I have yet to find out.  However, The Hemochromatosis Cookbook lists clams as having such a high level of iron that I think it is a typo.  I have eaten a bowl or two, or more, of clam chowder in Boston, US before I knew I had haemochromatosis (but suffering symptoms) and I did not have a problem.

Googling "iron content in oysters" 100 grams = 7 mgs.  Clams = 28 mgs iron in 100 grams, so clams are very high.  NZ mussels have more than 100% of the RDI of selenium (135%) and iodide (117%), so that could be a hint.

A few months ago, I was in France again, and the mussels beckoned and seduced me.  Warily I ate them, but all was ok.  A long way to go for some safe mussels though.

So far, I have not come across and medical research about having too much iron in one meal causing a spike with negative results.  So, it is a mystery!

If you know what type of mussels you ate (like I don't know what the small black ones are called), perhaps you could google and find out the "Perna canaliculus values per 100g" of them.

 

Oops, Perna canaliculus is the biological name of the NZ green lipped mussels - not the same of the table that describes all levels of "nutrition" in a food!!!!  Getting long past my bedtime and not thinking.

 

Thanks Sheryl - yes may be food poisioning. I have been feeling so much better and this blew me away. Will still stay away from mussels either way. I have to say chickpeas have the same effect. Low grade pain in intestine (not stomach) and then feel lathargic, slightly poisoned the next day and skin has a grew hue.I found this for treatment - so thought I would try it if and see how my body responds. "Iron toxicity is treated by efforts to remove the remaining iron from the stomach by administering a solution of 5 percent sodium bicarbonate."

Thanks again - Shell

 

Legumes are high in non-heme iron, higher than the proverbial spinach.  No reason not to eat them if you have haemochromatosis though.  They are too high in starch for me though, and starches make me feel lethargic and  poisoned.

Interesting about the sodium bicarbonate which reduces acid.  Does high acid cause an increase in the uptake of iron, I wonder?  On another post, someone with HH was given an antacid medication because he had high acid in his stomach.  And PPIs have been found to reduce the uptake of iron, however, they also reduce the uptake of other minerals and nutrients.  So we can't win with that one either.

 

Hi Sheryl - you are avery good detective! The sodium bicarbonate is working well - interesting that it blocks other minerals too! I plan to keep it and take it only when I have problems. Yes I read somewhere that acid - like vinegar / cider vinegar is no good, but I have read the opposite too!.I was just listening to a talk from a gastroentrologist - Dr Dave Das Haemochromatosis Society conference 2016 on youtube - discussing how iron is absorbed in the dueodeum and the cells of the villi walls switch on the transporters - the problem with H is the synthesis and release of Hepciden which (as I am sure you know) regulates the entry of iron into the system. Iron also feeds bacteria - anywhay hopefully this is the last of my problems - feeling like a hypochondriac!!

Hope all is good with - thanks again.

Yes, our hepcidin does not switch on to switch off the intake of extra iron.  Also Helicobacter pylori thrives on iron, so we are prone to it.  I have been treated for that about 3 or 4 times, as it keeps returning.  As does cancer thrives on iron.  We are doooooomed!!!!  It certainly is easy to feel like a hypochondriac and ignorant drs don't help.

For many years, I had a dose of cider vinegar before each meal - like an aperitif!  Then I got sick of an extra job to do, so stopped.  However, does the acid in the vinegar become neutral when it is consumed??  Can't remember.  Same as one would think milk was neutral, but it becomes acidic in the stomach.  But it is recommended that drinking some milk with our meals reduces the uptake of iron - that is because of the calcium in it.  So confusing, bringing acidity and bicarb into the picture!!!!

I will stick to my small glass of a good red with my dinner because of the polyphenols in it which also reduces the uptake of iron

 

Many years later, I find that I now have Parkinson's Disease. Now knowing the signs, I have had it for years but it is now so arduous to walk and stand. It sounds strange but the symptoms of HH morphed into symptoms of Parkinson's. The fatigue, bone and muscle pain, thermo disregulation, gut pain, hormone imblance, etc. etc. are all part of Parkinson's too. But HH has got nothing on Parkinson's. I would rather just still have the HH. I still have vx every three months. Just putting it out there. I wonder if there any others have developed Parkinson's.

My haemotologist also dismisses my high TS% and high MCV, because all other supporting levels are good.  This can be very frustrating when we think this might be the cause of what we are feeling, and we want it fixed.  My folate and B12 levels are good.  Prof Pierre Brissot says in his research publications that high TS% is toxic, yet he also explained at a conference I attended this year that TS% is the last level to reduce and does not come down until the ferritin level is down to at least <50.  This is particularly so for C282Y/C282Y.  It is different for lesser aggressive HFEs.  He suggested that I have a venesection program personally devised for me, I expect, rather than according to some formula.  Which I think I am having anyway and my haemotologist goes with my suggestions.  It is all trial and error, but I spreadsheet my results to see the pattern. 

I have found that my TS% does not reduce to normal levels until I keep doing 3 monthly venesections even when my ferritin is <30.  That is also when my serum iron starts reducing too.  And my MCV finally come down to 100 (could it be the Vit E and CoQ10 working?).  However, neither TS% and serum iron stay low every 3 months.  (This is at about no more than 1 week before venesection when I have found it best to have an Iron Studies test to get the real story.)

Somewhere along the line chasing up high MCV reasons, I have come across that it means we have enlarged and mishappen red blood cells, and vit E and CoQ10 is said to be good for that, as it is for damaged mitochondria which is what I have been told by a HH researcher is the cause of continuing fatigue due to delayed diagnosis.  So when I want to treat myself to something good, I go for a good quality CoQ10, probiotics now and then particularly after antibiotics, resveratrol, as well as Vit E which kind of went out of fashion for a while, on top of a good multi vitamin.  It is also important to keep up antioxidants, and for me that also means Vit C, which I take in chewable form (just let it dissolve in mouth) last thing at night.

Vit D is also important - tablet form does not work for me, so I was put onto Vit D3 forte drops and my blood levels immediately increased.  My husband could not absorb B12 in tablet form and after years of serious problems, he was given the injections and his outlook on life changed dramatically for the good.

Many years ago while suffering the symptoms of HH but not diagnosed, my BF and I went to a 'health' resort and for extra $$s saw the dr and had a blood analyses done.  We were given a photo of our how our red blood cells looked under the microscope, and a report on our 'health'.  My friend's RBCs were stacked up like coins and misshapen, and mine were a good healthy free floating sexy shape.  Since my diagnosis, we have come to the conclusion that our blood samples must have been mixed up and mine were the misshapen, stacked coin look, which is consistent with the descriptions of high MCV.  This health check did not discover my iron overload either.  If you want to confirm this for yourself, find out where you can have a blood analyses done.

My blood has been so thick and black looking that it was difficult to venesect.  Since taking 100mg aspirin per day, my venesections are much more free flowing and my TS% and serum iron levels started reducing.

But, my Hb is always high - unlike yours.  And normally, we who are homozygous C282Y replace our red blood cells quickly.  This sounds like the more serious issue for you and should be investigated.  A google of "low hemoglobin and iron overload" has brought up a number of mentions.  On one blog, almost all the people with this problem were vegetarians.  You might find something that is relative to you.

Are you vegetarian?  Are you avoiding eating foods with iron?  It is not recommended and no point doing it.  Pernicious anaemia is also mentioned (I don't know anything about it). G6PD (you will have to look this one up too).

I hope the taking of B complex is enabling you to have very regular venesections.  It does not help if they are all over the place if you are being turned away because of low Hb.

Let us know how you progress.

 

Hi Sheryl, Thank you for all your info.  I was diagnosed with HH 8 months ago after a routine physical and blood work.  My doctor noticed an increase in my iron numbers and did the genetic test for hemochromatosis. My TS was 95% and Ferritin was 65. I had two phlebotomies and my TS went down to 44% and Ferritin down to 20.  I had no physical systems such as joint pain or fatigue. I am 57 years old and exercise daily (running) so I always had some minor aches and pains.  I have not had a phlebotomy in 6 months and my latest numbers are: TS 90% and ferritin 38. So, I just had another phlebotomy and will get labs done in 2 weeks to see what my numbers are.  Just not feeling very good about this high TS%.  Everything that I read about it does not sound good. And not much info about it.  Lots of info about high ferritin which I never had. Just starting this journey of research and educating myself.  I have 4 kids and want them to be checked now.  Glad I found this forum!

Hi Mary, you don't say what HFE genes you inherited which might half explain your numbers.

At least I see that your TS% is responsive to phlebotomies.  My TS% has never got that low.  But your ferritin is low or at a good level for someone with HH.  Your serum iron level is important to note too as your TS% is your Iron divided by your TIBC (which is the fourth factor of an Iron Studies).

While Prof Pierre Brissot states that a high TS% is toxic, he does not say in what way.  As I said before your TS% is responsive to phlebotomies, so that situation does not stay chronic for you.  Long term undiagnosed HH with high levels of ferritin seems to cause damage to the mitochondria according to some research.  The only suggestions I could find to aid this situation is vit E and CoQ10, so I am going with that.

How good is your Hb, does it recover well or what is it before you venesect?  Looking at the big picture is necessary.

 

Hi Sheryl, I am homozygous for the C282Y mutation. My serum iron was 199 at diagnosis, went down to 90 after 2 phlebotomies now 6 months later with no further phlebotomies my serum iron is 176. My TIBC is 195. My Hb is currently 13.8 and at diagnosis of HH 8 months ago it was 12.9. After phlebotomy went down to 12.3.  So doesn't seem to be affected much. Thank you so much for the great information.

Hi Mary, it seems to me that you are one of the lucky ones, who although you are homozygous C282Y, you are not loading iron.  Where I come from 199 is 19.9 in the normal ref range (for your age) is 5-30.  Your TS% is a marker for the HFE genes, so that was confirmed by your genetic test.  You might not have the CNPAT gene.

Researchers have found that another gene called CNPAT as follows:

"1.2 Genetic factor favouring iron excess

Studies by Barton et al of 56 C282Y homozygous patients indicate that a mutation of another gene, CNPAT may have a role in the development of excess iron." 

Another further explanation of the action of TS% is in the following research:

"2.3 What about transferrin saturation in haemochromatosis?

As the earliest biochemical abnormality in haemochromatosis, increased transferrin saturation is the first line diagnostic indicator of haemochromatosis. Recently published research by Bardou-Jacquet E et al, 2017 on 266 C282Y homozygous patients showed that the duration of exposure to elevated transferrin saturation, ie > 50 percent during maintenance period of 13 +/- 6 years, had negative impact on general health and joint symptoms. Their research also showed that while ferritin dropped steadily during the induction phase of treatment, transferrin saturation remained high until the end."

These research topics, among others, have recently been presented by Prof Pierre Brissot at the Haemochromatois International meeting at the BioIron Conference in Los Angeles in May.  If you google these topics you will get more information.  I have not had time to do so yet, as I have just received the report today.

But keep having it monitored as our bodies do change.

 

I have googled prof Pierre, he says that we have to alter or change management of hh in maintenance stage if ferritin is low to normal, but high iron saturation. But the articles and power points don't say how. My doctor has told me on every visit that he and his whole physician group are not worried about high saturation, only ferritin. Very confused as to who to believe. I am on my 16 year, and my ferritin rarely gets above 70. Every 4 month phlebotomy's. My saturation is above 80%

Hi zach, yes, my puzzlement also.  I actually sat down with Prof Pierre at a conference and showed him my spreadsheet of blood test results, indicating all the high TS% and low ferritins because he had talked about the TS% being the last to reduce after ferritin had been brought down to <50.

His answer, and also Prof Crowe's answer, was to have customised venesections (i.e. not sticking to the usual 3 monthly plan), reduce quantity taken, and increase frequency.

I must say that when I had been put back to 2 monthly venesections for 2 years after my haemotologist had made the mistake of putting me on to four monthly and I ended up so much worse with chest pain and arrythmia, everything finally dropped to normal range, including serum iron.  My Hb was still good.

But after starting venesections in 1998,  going back to 2 monthly is hard slog again - I thought I had graduated from that in the early stages.

Then when I went back to 3 monthly it all increased again.  So 2 monthly may be the answer, I just don't want to go there again!!!!!

Perhaps try 2.5 monthly for a while and see what happens.  If results are not satisfactory, then 2 monthly.

 

Thank you for the info Sheryl.  With most of my iron numbers being normal but high (90%) TS my situation does seem out of the ordinary.  But still worisome because of all the literature stating high TS % has negative health consequences. I will try the more frequent phlebotomies with less blood taken at each one. I am sure I will have to explain to my doctor why. Wish I would have known about the conference in May in Los Angeles.  I live near there.  Will keep an eye out for others near me!  Thank you so much for helping people with your knowledge of HH.

Hi Mary, you may not get anywhere with your dr as you don't fit Prof Brissot's description of being 6 to13+ years of chronicly high TS%.  Your TS is responsive to phlebotomies with only two phlebotomies.

If you join a hemochromatosis association, you are likely to find out about the conferences.

Still talk to him about it though as drs need educating on this.