Low Serum Ferritin, Very High Serum Iron ?!?!

Thanks, Sheryl.  I will look into Pierre Brissot's work.  I have not been tested yet for HH but my doctor mentioned it as a possibility as my Serum Iron keeps rising.  The strange thing is that my Serum Ferritin is low, so I'm having trouble finding any information on a low Ferritin/high Iron condition which seems to be quite rare.  Because my Iron was at an "alert level" I quickly went to give blood but am wondering whether it will lower my Ferritin even more and cause some problems.  I need to get a full iron panel to get the TIBC and TS% numbers.  I'm also aware that living at high altitude may excacerbate iron overload, and I've lived at 5280 feet above sea level for the last 8 years.  My energy levels are good but I've had several scary racing heart / arrhythmia episodes so I want to figure out what's wrong.  I'll have more info once I get a full iron panel.  Anyhow, thanks for your input.

Well, I am going to have to investigate this situation more because my husband is in the same situation, as per yesterday's appointment with his dr.  His dr is well versed on iron disorders but has no answers that he has put forward.

Although my husband's SI is 38, high but definately not as high as yours, his ferritin is 18, and his TS% is borderline at 45%.  He does have H63D/H63D but after an initial series of venesections, he has not had any for a long while now.

My search last night has uncovered stuff I am not happy about, but then it was written by what I think is a pseudo medical person, so I want to investigate true medical science further.

We talked about increasing his vit C intake with meals, BUT in reality, he is already loading iron, it is just not being dispersed through his body.  I mean, really, this is something we with HH usually avoid.

Maybe the vit C might loosen it up - layman's terms.  As my husband is not feeling unwell, not having any HH symptoms (usually caused by ferritin loading into organs), dr not overly concerned.  My husband has already had checks to see if he is bleeding internally - negative.

I have had venesections when my ferritin level was already down in the 20s (did not get test results till after venesection) with no bad effects.  The other thing I would look at is a small dose of aspirin a day (i.e. 100mg) which might loosen it up, I have done this with some amazing results.

I had not suggested my husband take it yet, as he bleeds too well already when he scratches or cuts himself.

When I have time to follow up this other lead, I will get back to you.

TS% >45 is THE marker for HH.

 

Hi Sheryl

As you may remember I am also a H63D/H63D.

My ferritin was around 2000 when diagnosed, After deironing it dropped to 50 and I'm doing maintance every 8 weeks and the ferritin stays about 25 and hemoglobin is always over 17..

Seems folks like me and your husband either arent effecedt much or have signifigant problems. I think this is caused by another gene that is probably not detected yet.

Personally I take 400mg a day of natural  mixed topocals  of Vitamin E. 5000 units of vitamin D and 400 of CoQ for the liver and brai problems.

I avoid Vit C, back in my younger days I used to take megadoses, and I have a suspecion this may have triggered iron overloading in my case.

As you know what is considered normal for the C282 is about a 30 drop per phelobotomy, I deironed (according to the ferritin)  quickly in only about 20 or so weekly plhebotomies, I dropped to 1500 a few weeks and then platued, then 800 then  200 and now am stuck at around 25.

But the ferritin is a very poor predictor of my physical state. A recentHH MRI shows iron to the brain and it seems its probably stuck there.

Your husband from my point of viiew is like me, he has HH but not classical C-type and there is much that is unknown foe is H63D's  at this point.

.

 

Hi jwrhn

Your ferritin was extraordinarily high for homozygous H63D.  During your de-ironing stage, was your Hb ever too low for a scheduled venesection?

While my husband did not seem to show symptoms like I did prior to diagnosis (his ferritin 557), 3 years later he was diagnosed with Hodgkin's Lymphoma.  Subsequent treatment of chemo and radiation seemed to have stopped him from loading iron.  Not a nice cure though.

The medical profession are therefore worried because his ferritin is reducing with no obvious reason.

The Hh researchs are looking at another possible gene that causes some people to have problems when others don't.  (Never really met one though!)  In my personal experience, I have found those who have had glandular fever at some point in their lives fair worst.

Anti-oxidents are definitely important with HH.  Vit E, C and A, I believe.  However we have to time our consumption of vit C - make sure it is on an empty stomach so that it does not increase the uptake of iron.  We are prone to low good cholesterol too, which results in low vit D, and a reduction in hormones, including those lost via the pituitary gland damage.  Low vit B12 also causes neurological problems.  Some people cannot absorb vit B12 in tablet form, and need injections.  As in my husband's case.

I do suffer from problems associated with brain affected by iron but unable to prove.  No-one has picked up iron deposits in my brain yet - not that they have been looking.  MRIs done for my prolactinoma have been looked at but I don't think they show the basal ganglia or the cerabella very much.  A study of a  person discovered to be affected by iron deposits in the brain was given Cabergoline.  It was described as an iron chelator for the brain.  I take this for a prolactinoma which was expected to be caused by HH, as iron is allowed into the hypothalamus, which sits just above the pituitary gland.  Forgive me if I am repeating myself to you on this.  It is a lot to go back to reread.

I am also searching the link between copper and iron overload.  So far, I have unearthed that excess iron reduces copper and ceruloplasmin, eventually causing aceruloplasminemia (serious neurological problems).  See Prof Peirre Brissot on this.  But, conversely, (and there always is, isn't there?) too much copper reduces ferritin, and this may be something that Hoonta needs to look at.  And my husband too.

Another thing you might think about to release that stuck iron.  My blood was so thick and black and hard to venesect.  I got fed up with this and decided to take 100mg of aspirin each morning.  Huge results - within less than a week, I felt lighter, walked faster, fatigue and body pain lifted.  It felt like my fine capilliaries had been clogged up with iron causing inflammation, pain and fatigue and these were now loosened up and dispersed from those capilliaries.  My next blood test revealed all iron studies results were in the low to normal range - even my serum iron and TS%!  My blood now flows freely when venesected.  My last iron studies - my serum iron back up, TS% back up - not so high as 100%, and ferritin still in the low de-ironed levels.  I still get tired at night but I am doing more during the day - even going to the gym!

But I want to get back to Hoonta with more info, but I have to do some more homework - not off the top of my head!

 

Hoonta, First your high serum iron level is very disturbing.  I have not come across anyone with such a high serum iron level.  I have to ask if the results have not got mixed up and they should be the other way around!  Do you have a printed copy of the results, to make sure the dr has not misinterpreted them.

As I mentioned to jwrhn, I have been investigating the relationship of copper and iron overload.  I am currently reading another website which is convincing me that excess copper reduces ferritin.

I googled "copper overload decreases ferritin" for the following information.  I won't include urls, because there is a lot of results to read.  Bear in mind, some are from pseudo medics, like hair analysis labs, etc.

There was mention that foods that a vegetarian would eat to such as seeds, nuts, beans, grains are high in copper.  That those with high copper tend to avoid protein foods esp red meat.  Those with high copper also crave sweets, fruit and fruit juices - that's my husband, the sweets, anyway.

As a vegetarian, how is your vit B12 levels?  If low, go for injections to increase levels.  They are more effective.  Also vit D is important.  If low again, D3 forte drops are best.  Good cholesterol is the precursor vit D, and if it is low, your vit D is probably low.

Vit C chelates copper.  It just keeps ringing bells to me, as I have already established from medical science studies that iron overload reduces copper/ceruloplasmin which is not good either.

My husband and I practice trying to reduce iron uptake by drinking, tea, coffee (tannins), red wine (polyphenols), dairy/cheese/yoghurt (calcium) with meals.  Calcium tablets with evening meal.  Check out your local library for a book called "The Hemochromatosis Cookbook" by Cheryl Garrison who is involved with the Iron Disorder Institute for reasons for this.  Not necessarily for the recipes, although I am intrigued by her suggestion to marinate meat in tea, but there is a lot written about iron and food.

Now, I am going to make sure my husband increases his intake of vit C between meals.  All antioxidants are good too, e.g. C & E.  Other copper antagonists are molybdenum, sulfur, vitamin B6, manganese, zinc and others.

Next time we see his dr, we will ask him for a blood test for copper/ceruloplasmin.  Other minerals, e.g. lead, molybdenum and zinc can be involved too.  But that is won't be till January.

After I read the Iron Disorder Institutes article on Anaemia of Chronic Disease, I found that rather alarming too, given that my husband has had Hodgkin's Lymphoma.  A few months before that diagnosis, I noticed that one of his iron studies revealed that he had enlarged macrophages.  On questioning the dr, I was told that was no problem.  But later I did read that it is a sign that something is going wrong, e.g. HL.  And the Iron D/Inst advise not to take iron supplements.

Anyway, have a read, ask to be tested, and let us know the results.  It is always good to know the results of these investigations.

 

These were my exact results, C282Y/H63D on the genetic testing, relatively high serum irom, (170)  high iron stauration (47%) and low ferritin (17) and my bilirubin has always been slightly elevated (which the doc thought maybe Gilbert's syndrome but he doesn't know what else to do with me). 

Have you found out anything else about this? What treatment was recommended?

Hi, I've just read your post. Not sure if I'm reading it correctly - are you saying that it's possible to have HH and have low ferritin levels? Or is that after phlebotomies? Just wondering because I have a family history of HH and told GP who did a ferritin test and because it was low (11), started me on iron tablets and I've been really ill ever since. But I assumed he must be right because I was under the impression that it's not possible to have HH/iron overload and a low ferritin level??

Can I ask, are those blood test results before any phlebotomies? Don't know whether I have had tests for iron saturation or serum iron but but because my ferritin levels were low (11), my doctor started me on iron tablets and I've been really ill ever since (I only asked for blood test because I found out there are people in the family with HH). I've been convinced that the iron tablets are making me ill bit thought it must be something else like a thyroid problem.

What a mess of results!  Something is obviously going on, especially as you feel so bad with it.  Insist on having it investigated.  Tell dr it is too hard to live with your symptoms.  You want it solved.  If he cannot, ask to be referred to someone - start with an haemotologist, maybe an endocrinologist too.  Although you should have your pituitary gland hormones tested first.

 

Did you ever sort out iron issues with your daughter? My family  has same thing going on. Low ferritin high serum iron and % saturation with Tibc midrange to lower end of range. Hypothyroid too so will maybe that affecting it. Bilirubin also elevated. Seeing this in several family members