Strype, Heart palpatations are another big symptom for some of us.

Oh yea that's one of mine too!

Hi Strype

I was diagnosed about 5 months ago. I underwent 7 phlebotomies- one a week, and since then, have been feeling much better. Prior to the phlebs, i had very similar symptoms.

I initially went to the doctor because I was so exhausted, even after hours and hours of sleeping. NOTHING made me feel rejuvinated or capable of doing the things i normally do. I went because in addition to the exhaustion, i developed lumps on my neck. I was also experiencing slight pain in my joints, but after the phlebs, that pain was alleviated. I had incredible pain in my lower left side, right under my rib cage. If felt like I was packing a brick under my ribs! It kept me up at night. It also felt like something was moving around right were I had my pain. I can't explain it any other way that this- it felt like there were worms burrowing around in my organs. Gross image, i know, but that was what it felt like. I still have pain there. While it is not nearly as intense as it was, it is still there, and my blood doctor has suggested that I have a biopsy done on my liver, gallbladder, and pancreas. I am going for those in the upcoming month and will let you know the results.

I, too, lost my sex drive. I thought it was just due to the fatigue, but once I was diagnosed and I learned about the common symptoms, i realized that that was the cause- i was worried about that one!

Mental alertness- I have always had a hard time concentrating, which my mother has always suspected to be ADHD, as I was such a hyper kid with ups and downs and crashes and lack of organizational skills, but was never medicated for it. When my iron levels were their highest, my ability to think clearly was for SURE hindered. I couldn't concentrate and sometimes couldn't even recall words in general conversation. I felt like I was struggling to think and process thoughts. WHen my iron reached normal levels again, these symptoms were lessened.

I still feel as though my energy hasn't been the same since my initial diagnosis. I have been trying to do other things to boost my energy. I am working out more and trying to eat better and avoid iron rich food.

TIP! I hear that caffein slows the absorption of iron, so it is recommended by some to drink a coffee or tea with meals.

This disease sucks. I sometimes feel that no one understands the quirky and annoying and annoying symptoms that can so easily be written off as products of other things. I remember when my symptoms were at their worst- I would tell people that i was tired ALL THE TIME, and so many people responded with comments like, "of course you are! you are a teacher" or, "aren't we all! get over it." or, lay off the booze" "get to sleep" "you are depressed". All of these comments made me feel I was just overreacting, being a baby, etc. . ., but something inside me told me it was not normal to feel like sitting down and taking a rest after walking across my apartment was NOT normal. It was tiring to raise my hand and scratch my head!

Are you undergoing phlebs? Are your symptoms still as sever?
Let me know! it's comforting talking to other people who have experienced the same things.

Hope you are feeling better, handling this difficult disease as best you can, and are keeping your spirits high.

Best
Sally

Sallywag!


You sound just like me!


That's really the point of this thread. I REALLY wanted people to start coming forward with ADHD/Bipolar problems because I feel that what we are calling ADHD may very well be an iron (or other heavy metal) accumulation in the brain.

Another thing, that pain on your left side should be your spleen. My gastro doctor told me everything was normal. When I went to my family doctor last week she said my spleen was in fact enlarged.

That would explain my pain.

You got me to thinking about this after i read the post.

I've seen suggestions of correlations, with autism, irritable bowel syndrome, psoriasis and others. But I realized last night what must be going on.

The known classical HH genes are all point mutations. That almost definitively means that somewhere a long time ago the first person was born with each of those mutations. We're all descendants of those individuals. Just like all pink dogwoods are descendants of a single tree with a point mutation affecting color.

So basically say you have C282Y on the HFE Gene which resides on chromosome 6; that chromosome was passed down to you from that very first person so long ago. That means that minus the intervening genetic drift that has invariably occurred, that all people with C282Y have the same chromosome six. Such a person has all the other genes on chromosome six in common with everybody who also has C282Y. This perfectly accounts for why there are so many shared syndromes amongst people with hemochromatosis. They are not the result of hemochromatosis at all, they result from other genes on that particular chromosome 6.

Obviously there was evolutionary bottleneck at some point, in which the majority of the survivors carried C282Y and H63D. Probably some kind of tragedy involving the availability of dietary iron. In fact it might have happened more than once given the high rate of occurrence of these point mutations.

Folsom,

That is an interesting thought.

The doctor who discovered my HH theoried that this mutation evolved through some type of specific genetic need, perhaps the need for blood to clot better in some particular population for some very particular reason?

Maybe we are all descendents of some barbarous Celtic tribe, kind of like Mel Gibson in Brave Heart? Well, we're still kicking around on this planet, so maybe this mutant gene served its purpose... maybe we should be thankful?

This is a very interesting thread; one the medical community would be wise to acknowledge. I am turning 46 tomorrow. My symptoms, in order of occurance from about 20 years prior to diagnosis:

-VERY heavy periods (since age of 25)I had a uterine balloon ablation when I was 36 to slow my periods. Then the fun really began...

-joint pain (elbows, knees, hands, feet, neck,and now hip)beginning from mid 30s and fully diagnosed as osteo arthritis at 42

-random bruising
-plantar fascitis (no idea if related- just thought I'd throw that in!)
-very dry skin
-fatigue
-polymyalgia type symptoms
-lack of libido
-high blood pressure (early 40s)
-heart palpatations
-idiomatic panic or anxiety attacks
-migraines- some lasting an entire month
-fuzzy/foggy brain functioning
-lower back pain
-weight gain despite regular exercise and low calorie intake (1500 cal/day)
-early menopause (41)

In the year prior to diagnosis, these symptoms became very elevated and debilitating:

-Extremee foggy brain- had trouble finishing sentences, paying attention while driving, saying seemingly random, unconnected things
-Shaky feeling in limbs, especially when rising
-elevated glucose
-bloated abdomen- esp liver area
-pain in liver*
-feeling like "the baby is moving" or as described above, worms in my body cavity!*
-TOTAL exhaustion*
acutely painful 'nodes' all over abdomen, which would come and go*
-sharp pains within ribs*
-sharp shooting pains in feet*

and just for fun- I would set off metal detectors at airports for several years prior to diagnosis- the 'wand' would buzz and the attendent be mystified. This would not happen every time, but often.

*these symptoms intensified during phlebotomy treatment

Anyone else?

p.s. forgot to mention above that I am compound heterozygous C282Y and H63D . My 60 year old brother has the single mutation and also has most of my symptoms. His ferritin and TIBC% were 600 and 60% at diagnosis. Mine were 1016 and 95% at diagnosis. My mother was never diagnosed but died relatively early of heart problems after suffering from many of the idiomatic symptoms I listed for 20 years.

We are living testament that 'carriers' can get the full blown disease as well.

- *Joint pain (primarily knees)
- *Unexplained weight loss (around 10% of my body weight)
- *Loss of libido
- Depression - might be unrelated
- Heavy periods (like bighair -- i think when I went to a Pill that lightened them my numbers shot up)
- *Random bruising (always just thought I was fragile!)

The ones with stars have either noticeably reversed or stabilized for me since de-ironing.

It still amazes me how different we all are, I had joint pain mostly in my fingers, I had a very light period and still do, I had severe weight gain and lost 60 pounds during my de-ironing, loss of libido, never did get that back :-), Never was depressed, I still am very hypoglycemic and I still have heart palpatations on a daily basis, and they have been worse as of late. My skin turned orange and yellow and now it is back to normal and I didn't put the weight back on now four years out.

I am 28 and have experienced the following, which I have been told is related to Hemochromatosis...
Pain under ribs for many years
Bronzed skin
Unexplained bruising on my shins/legs
Very dry skin/ bad acne(not sure if acne is related but have been told that hemochromatosis leads to increased bacterial infections.)
Fatigue

Oh yea

The foggy brain and joint pain. I haven't seen a symptom yet that I do not have. I am homozygous for c282y.

ABOUT THE GENE-

There is a Doctor named Sharon Moalem. He has some VERY interesting theories...

http://survivalofthesickestthebook.com/blog/?author=3

He thinks that HH may be a response to the Bubonic Plague. It seems that in people with HH, all of our blood is filled with iron except in one place- The white blood cells are depleted.

He speculates that because the Plague needed the iron in white blood cells to replicate, our genes are a genetic response. The average person never lived over the age of 40-60 anyway back then, so HH makes perfect sense.

He thinks it began with the Vikings and that they gave it to the Celts.

These guys don't agree with Moalem,

http://www.ias.ac.in/jgenet/Vol84No1/47.pdf

But seriously you shouldn't listen to these crackpots, nobody will ever know the truth. The only thing that can be known about C282Y is either there was powerful evolutionary selection for it's presence (most likely), or early colonization of western europe was by a group who possessed C282Y.

Whatever the bottleneck was it was something to do with western europe, not the global population. Which rules out Bubonic plague.

I forgot to add that the prevalence of C282Y in western European populations, is not proof that the mutation confers any advantage at all. In fact it is a fallacy that needs a name. That mutation occurs on a chromosome, chromosome 6, and there are a lot of genes on that chromosome. C282Y comes as a package deal with a unique set of all those other genes, it is not a mix and match deal. It could be that another mutation in another gene that occurs with C282Y on chromosome 6, is actually responsible for the reproductive advantage that has caused this particular version of chromosome 6 to predominate.

Just for example, people with the chromosome containing C282Y tend to have lower blood pressure, and cholesterol. This isn't the result of C282Y, but probably another mutation on this chromosome 6. One could argue that this is the reason for the prevalence of hemochromatosis.

In any case my point is that human DNA occurs in descrete units (chromosomes) that are mixed and matched like building blocks. This means that bad mutations exist and can even be common, even though they confer no advantage. This happens because the bad mutations emerge on chromosomes that contain mutations that do confer great advantage.

This is well understood and even taught at the undergraduate level, so it's amazing that pseudo scientists are still getting away with these shoddy claims, that bad mutations have a purpose. Sickle cell anemia being the exception not the rule.

Few comments. One regarding ADHD being related to heavy metal deposits. Actually, ADHD is clearly a neurological disorder, with a strong (but not complete) genetic basis. If one of your parents has ADHD, odds are about .58 you will have it; both parents have ADHD, your probability goes up to over .90. As currently defined, ADHD has to be present, or the indications of it, prior to age 7. It is unlikely one would accumulate enough iron by that age to cause a problem. The iron build up may eventually cause an attention problem, but that is much different than ADHD.

In regards to genetics, there are several different genetic disorders that cause iron overload in different populations across the world. It might have conferred a survival advantage in the days before processed/enriched foods (anytime prior to the 1900s). There was not as much iron available in the food at that time. Nowadays, with steak houses, megaburgers, enriched flour, etc, our HFE genes become a liability rather than an asset. But as Folsom1973 notes regarding survival advantage, these are all hypotheses and the truth, or fact, cannot be determined.

My symptoms included occasional achey joints, occasionally feeling fatigued, and chronic red/flushed face. Also had occasional twitches in one or two fingers similar to that seen in early Parkinsons, developed catarracts early (in 40s), tinnnitus (bilateral, but could be due to loud music), and PVCs (preventricular contractions).