Not a Vampire Or anything but...

Most GP's don't even know about Haem its a new one on them. it was to my GP who I see once in a blue moon (Norm locum GP u see)  - mind you having said that I've found its more the younger generation of GP's who have qualified within the last 6 Or 7 years are the ones who know about Haem. I use to have regular 1/4 full Counts fasting the lot as I have hyperlipidemia medical name for fluctuating cholesterol was diagnosed with that way back 2006 and of course in your late 30's you think right change life style will put that right and sure enough it did - although I am not a drinker and don't live off fast food I started running every morn and subsequently stopped that in its tracks - Although thinking bout it now cholesterol  is heart related so this prob was the first signs of Haem. Theres no doubt about it you cannot change your genetic makeup - if your parents have a prob you will no doubt inherit it. Because ferritin levels (iron) is not requested in a full count its actually not tested so of course here am I thinking I'm as fit as a fiddle having my 1/4 counts and all the time I could have keeled over. - very misleading! I have been told because Haem is treated by regular section to depleat the iron levels theres not really loads of £ generated by Drug companies for research so its not researched enough - I know there is 1 tablet but the side effects are just unreal so not advisable for most people. I have also been told if I had 3 children 1 of them would almost cert have Haem. Great gene to pass on although now I know about it I would be watching and get them tested - I am childless at the mo although I know you can end up with probs in that area - might have sperm check done actually to ensure alls in order. My only prob at the moment is my teeth - they are going like castenettes its not a tooth ache its like a pulp throbbing but not like a raging toothache more like when u have had a cold and it effects your sinus. I'm due to see a specialist as once again my dentist and another dentist I visited have never heard of Haem - January this year was running round like headless chicken thinking I had probs - nothing wrong pameramic xray - more x-rays nothing. actually it is coming from mainly two metal fillings at back that I had done in 1990 - although I do have some rescession and again this is highly poss to Haem - I think much more research cert needs to be done as you are getting more & more people passing in their 40' & 50's just totally out of the blue - just wonder how many have had Haem and gone undiagnosed - I am half celtic so have been told the likely hood is high for me to have both genes which I do. Think my father prob had it although he didn';t pass until 2006 and that was heart and a total mystrey why all his organs begun to pack up all of a sudden. His father passed in his 30's and my dad was 70 so I reckon this is where its come from. Well like said a old iron pipe it tastes absolutely terrible lol Guess the iron is working OT to make up for all the sections I've had since Jan of this year - Shall see what it is come October 

Paul, I think we have conversed before.  I told you that I ended up with my beautiful white teeth going grey overnight, because (although I had not been diagnosed at that time but had long term severe symptoms) iron had deposited in the pulp of my teeth.  Many years later, a dentist and dental specialist confirmed that was possible.

Keep in mind that both your parents had to be at least carriers for you to have 2 genes.  It is quite possible that your dad had two genes but your mum had to have at least 1 too.  Although undiagnosed, I am sure my dad had two genes (going by his general health - eventually died from cancer), since then my mum and siblings were tested and there were all carriers (i.e. one gene).  Out of 5 children I was the only one who hit the jackpot.

None of your children will get HH UNLESS their mother has it or is a carrier as well.  One gene does not make haemochromatosis.  However, we tend to be attracted to our own kind ...

However, there are a lot of people these days with NAFL (non alcoholic fatty liver), and diabetes, from poor lifestyle - eating foods containing sugar and starchy foods (sugar in disguise).  This has been proven over and over again, but the sugar companies are fighting it in the same manner as the tobacco companies did.  Now those with NAFL will have a high ferritin iron level, which when discovered has drs saying they have haemochromatosis.  They don't - they have high ferritinaemia.  And of course, too much alcohol, is a culprit as well.

You say you are half celtic - what is the other half?  The "Vikings" or, in reality the Scandinavian, people were also responsible for HH.  And they took over much of Britain for a long time.  So a lot of people who believe they were Celtic also had a bit a Scandinavian dna in them.

My great grandmother came direct from Denmark (with a Swedish mother), and my great grandfather from Scotland.  Great, Scandinavian and a Celt - couldn't miss out could I?  Otherside was Scottish too.  However, now having studied the history of the "Vikings" in Britain, and knowing the tall, blond, blue eyed genes that were passed along, I think my Scottish great grandfather had a lot more Scandinavian than Celt.  And don't forget that the Scandinavians, spread their genes all around north western Europe as well.  Same as the Celts before they landed in Britain.

Now I had a breakthrough earlier this years.  I too have been suffering terrible body pain and fatigue, 12 years after being "deironed".  No one had any answers for it - should not be happening.

After yet again having a very difficult venesection because my blood was so thick and black, it would not flow - took 2 hours and 4 attempts to get enough blood out of me.  Yeah, dranks heaps of water - had to have a pee break half way through.

I am thinking, so wonder my body pains so much.  It is like having dirty thick grease in my muscles, cells, lymph glands, whatever.  A car won't run properly on dirty grease/oil, so why would I.  After getting no pos feedback about taking "baby' aspirin, I took it on my own bat to do so.

In less than a week, the ship's chain and anchor I was carrying around disappeared, I felt lighter, walked faster.  Next venesection was a dream.  However, while I can do more during the day, I still crash and burn early at night.  But that was not the only thing.  I got my results from my blood test just after that last venesection - the test had been taken a week before venesection.

 

EVERY RESULT was in the low norm range.  I thought impossible - after all these years.  I phoned the pathologist to check that my bloods had not got mixed up with someone else - well, he was not going to come into that, was he!  Although lab phlebotomists told me it sometimes happen.  I got another path request and had another Iron Studies - same low results.  Although my ferritin is usually about 34 after venesection, my serum iron and TS% were always very high.  Now, they were both low normal.  I have no signs of bleeding as a result of taking aspirin.  My HH seems 'cured'!

I have now put off my now due venesection till I have another test and see the haemotologist.

Now, aspirin is not a chelator (as far as anyone knows), but has it loosened up my blood enough to draw it out of all the cells that it was clogging up?  Maybe, it might draw the iron out of your teeth.  You should make sure that you don't have a problem with taking aspirin.  You won't find a dr that will confirm what I have just told you.  But that is how it has worked for me.  Maybe next results might have a different story.

I wonder if iron reacts with amalgam?

Well seems like the hereditary Haem is not as common - Although I know it is actually think theres just not enough testing being carried out on patients. What was your orig iron level ? Mine was 1000 and I'm now 45 years old - its taken me since Jan this year with weekly section to get it down to 45ml    

Hi fasthorse, you don't sound well at all.  I am sure we have conversed before too.  What is happening to you?  What is your cholesterol, vit D, vit B12 like?  We with HH tend to have low good cholesterol.  I am trying to increase mine, although I have been eating the foods that do that for years.  My vit D was very low too - cause guess what, cholesterol is the precursor to vit D, as well as our other hormones, and they are low too, despite supplementing.  HH can do this to us.

My husband who is homozygote H63D (and had a ferritin iron level of 552), got Hodgkin's Lymphoma - no proof of any relationship of course, fell into a dark hole, years later dr tested him for Vit B12 - very deficient.  Only injections work for him as his body did not absorb tablets.  His vit D ok, but mine is not and tablets were not working for me either - but Vit D3 forte drops do.

You may have to work on increasing your antioxidents.  I take a vit C last thing at night (despite the fuss about it) when stomach is empty of food, plus the fruits and veges I eat are full of antioxidents.

Are you eating red meat and greens?  There is no problem at all to eat them, just not red meat every day - mix it up with fish and white meat.  Too many people (and drs) believe they should not be eating it.  You need to get your strength back.

I can't imagine having blood drawn weekly--Did you feel ok with that?

  Mine was 280, i think. We may be measuring with different scales..It's 37 now which is in the normal range..1000 sounds deadly..Glad you have reduced  .It realliy seems the first draw was the best. I felt 19 again...but the ones later caused me to pass out and be extremely weak. So as i said, I just get monthly blood panels...and that seems to placate the disease..Many women don't know they have it until post menopause or as in my case, after a hysterectomy...I think it's more difficult for men..but bronzing is a big hint!

Wow, you have a lot of info, Sheryl. I enjoyed reading your posts. Thanks. Your poor husband. Sounds like he's really ran the gauntlet for illness.

I used to take Vit C, but read it enhances iron absorption. I do like greens, tho and they're high in iron..My B12 was very high when read several  years ago..That is an indicator of polycythemia vera - something similar to H..but my dna showed HH..  You know Vit C is energizing..i'm surprised you can sleep after taking it. You're taking it with the bioflavinoids, right? otherwise it has no effect.

  Yes, I think liquid vitamins are way more effective than tablets..It's hard on the stomach to digest hard sourced vitamins and minerals..I just wish i'd found about the disease before, and didn't have such a hard time with blood draws..my face becan to scar 6 years after a hysterectomy.. My mom's cousin had the same thing ha ppen to her..plus,she was very bronze, and the Drs told her the scarring was due to high iron..

  I didn't know your info on Vit D and cholesterol..fascinating. And you are trying to raise yours? Don't know anyone else who is doing that!!   My ratios are good, but chol is 200..it was 250 after hysterectomy..from 165! broght it down using "natural" methods...avoided the statin drug that one dr. prescribed. Thanks for your input..Again, appreciate the information!!!

  Thanks for the info on a previous post about heritage..that's quite interesting. My Mom is Irish with some Native American..Dad Scotch and Welsh, and Native Am....but my first DNA test showed over 50% Scandinavian...as you referred to...The Vikings conquered so much of the UK...and fought clear into Sicily...i'm sure they spread their genes!!!

Fasthorse, I am confused.  What you describe is not consistent with Hereditary Haemochromatosis.  Do you have a copy of your genetic test - what exactly does it tell you?  What was your TS% when your ferritin iron was 280?

If you have inherited only one gene, then your slightly high ferritin iron has another cause and you should not be treated for HH.  You can donate blood every three months at least - normally it is good for you.

The millilitres drawn for blood tests would not have any effect on HH.  You might have a very less effective form if you do have 2 genes and are not loading iron.  Keep having the tests anyway, just in case.

Do you have coeliac by any chance which could be reducing your iron level significantly?

By the way, HH is not a disease.  It is an iron metabolic disorder.  Have you obtained formal information from your country's haemochromatosis association?  This might clarify things for you.

 

Fasthorse, my previous response was before I read your last response to me, so it will sound strange.

I figure if I take vit C after my stomach has reasonably emptied there should be no problem, as vit C is said to promote the uptake of iron, but no food, no iron.

I find a vit C which I let melt in my mouth as I sleep, stops any sore throat or threat of a cold.

I have not heard of scarring of the face because of HH.  Is it from pimple - at your age!   Although, as a kid, any scarring I had thickened up.  Can't think of proper name for it, which I think is unusual for a fair skinned person.

People would often comment on my 'beautiful tan', but I did not go out in sun to tan.  After diagnosis, I realised why, and also that I had a tan where shoulder straps should show.  It was only my top half though.

I am trying to increase my good cholesterol - not bad cholesterol.  Drs should give you two levels, one for LDL (bad) and one for HDL (good).  Mostly they just give you the combined/median, whatever it is.  The single number I get is 4.2, so it is a different form of measure than yours.

With such an interesting mix of DNA, I am interested to hear what your HH genes are, and what your TS% level was, and is currently.

 

Hi Sheryl,

My Good Cholesterol is down too and the doctor gave me info on how to raise it.  My Vit B12 was also down.  I have Diverticulitis so am unable to eat red meat as that is my major trigger for flare up. I am going to see a gastro Dr. in a couple weeks and my GP said that if he feels the need to get another HH test he'll be the one to send me.  According to my local clinic they've not received my results from the first HH screening but the genetics lab says they were sent. Very hard here where I live to get this testing done.

Sunni

Can you ask genetics lab to resend?

I can't the doctor has to.  Just waiting for a reply now.

Have you contacted your countries HH assoc?  Perhaps talk to them and ask for help regarding your drs.

You have the famous (in the HH world) Prof Paul Adams, currently at London, Ontario who supported the HH assoc and used to answer blog questions.  He will have some muscle in your medical world.

Canada was the first to set up a HH association for support started by a famous lady (can't think of her name - in the HH world) whose husband's fight for a diagnosis came too late.  I think she wrote "The Bronze Elephant".  Sorry for being vague - bad memory, I could google this to confirm this information, but then, so can you, and you will get more info as you go.

 

thanks for the info Sheryl.  Will definitely look into this