Hi

Pity the DNA test take a while so you have to wait and see.

I was also relieved to find that I had HH instead of some other mean reason for a Ferritin of above 2000 and a saturation of 107%. Seems that a normal saturation is around 57% so you are not too far away. You can get back to normal pretty quick I suppose.

I also have had many pains and chronic inflammation in my joints for years so it's possible that you do have the symptoms but are in a less advanced state...probably younger.

Let us know what the test results are and in the mean time you should get the level down asap. It's just better to be normal than high on Ferritin.

Regards

Leon

Hi

Pity the DNA test take a while so you have to wait and see.

I was also relieved to find that I had HH instead of some other mean reason for a Ferritin of above 2000 and a saturation of 107%. Seems that a normal saturation is around 57% so you are not too far away. You can get back to normal pretty quick I suppose.

I also have had many pains and chronic inflammation in my joints for years so it's possible that you do have the symptoms but are in a less advanced state...probably younger.

Let us know what the test results are and in the mean time you should get the level down asap. It's just better to be normal than high on Ferritin.

Regards

Leon

I have some general info for all here. During this 4 year journey I was introduced to coffee enemas. Last fall, before the saturation levels were checked, my ferritin levels were at 623. My Naturalath brother suggested coffee enemas to detox the liver. With a slight diet change I was able to bring my ferritin down to 322 in 2 months. This was accomplished by a coffee enema once a day. Believe me when I say this was not easy to start. I mean "you want me to put what, where?

There is no other explanation for the lowering of levels so fast. Also I will be starting some boron supplementation. Most of us are boron deficient, and arthritis has been controlled and reversed in many cases with people starting to supplement with it. Look into this everyone and see if it helps.Lots of research out there on these two topics.

Be well.

Flyinthermals, thank you for sharing your coffee enema. I did a genetic test and it shows negative results but my ferritin levels .re 572, saturation 22%. Recently, I travelled to a Malaria infested country, and have a 120 days curfew for blood donation. I am concern that my ferrintin levels are way too high.
I was informed that our planet Earth has been pelted with iron dust from a fly by planetry star/planet. The amount of Iron dust will remain high for many years to come, some scientist says may last for decades... with this in mind, I set off to have my iron levels checked. It is on the high side. I then ask for a genetic test, it is negative. I am sure I would not be the only one with a high Iron count and genetically negative for hemocromatosis. My next quest is to have phleb...damn, I went to Malaysia for lunch, an hour's drive from Singapore and now I cannot have my blood taken out. The coffee enema sounds like a good idea.
Once again, Thanks for your input.
Maxirose.

Hello All,

I finally got my Gene test results back and I do not have HH. Although I seem to be a carrier of HFE...p.His63Asp mutation. Waiting for a follow up with my doctor to see what this means. I am not sure how many genetic tests they did. Were they just looking for the classic type or also for the low percentage other variants? It says in the report to look for other reasons of iron overload????? My doctor has put me on a series of phlebotomies every three weeks and I just had my first one. Tracking this down is driving me crazy. I seem to have all the symptoms of Hemochromatosis. The joint pain, sore and stiff knuckles on both hands. stomach pain, fatigue. I fell almost a daily pain under y left rib. Pancreas???? I have changed my diet and am eating the best I ever have. Why the heck is my iron so high??? I have 2 more scheduled phlebs before meeting with my specialist again. I hope he has answers.

Hello flyinthermals,

I looked up the His63Asp (or H63D) HFE mutation which is apparently spread worldwide as opposed to the C282Y mutation which is largely confined to those with northern European heritage.

It is interesting that you have not been diagnosed as having clinical HH although it is reassuring that efforts are being made to reduce your ferritin. Are you heterozygous or homozygous for the His63Asp mutation? It doesn't sound as though you have compound heterozygotes as you have mentioned no other mutation - or perhaps no others were tested.

I read that the H63D mutation is not associated with the same degree of iron overload as the C282Y mutation, but may lead to clinical HH / iron overload where there is another risk factor. The different mutations have different mechanisms for resulting in iron overload.

I also read that there is an unusual cluster of HH genotypes in a particular area of Quebec.

[See http://www.bcmj.org/article/genetics-hereditary-hemochromatosis and http://www.ncbi.nlm.nih.gov/pubmed/9410475 and other articles on the ncbi website].

This is an incredibly complicated field and in addition people seem to experience it very differently - they symptoms and the treatment. I hope you have now had a clear explanation from your consultant.

All the best, Christine

Hi Fly,
Regardless of not having classic HC you obviously have high stored iron (ferritin) which COULD be the cause of your symptoms. No guarantees but that's too much iron to be storing anyway so yes just get rid of it even if you have to do it by regular Red Cross Donations. Only drawback with that is they use SUCH large needles.... When I was first diagnosed I was at your level and my health insurance hadn't kicked in yet so I also donated at Kaiser! One didn't know about the other and so I could do it more frequently. They always test your hemoglobin first anyway so no worries there, although listen to your own body about frequency and of course it's always wise to ask your doctor about any precautions they might advise. But I personally would NOT listen to them if they say they're not concerned about your ferritin level. YES joint pain and fatigue can start at your level. Best wishes!

Oh and 57% saturation isn't cool either. Some charts may say that's not far above "normal" range but free radical iron poisoning starts at about 80% (they say loose bonds start at that %) and remember that 57% is FASTING then imagine how high it goes after you've eaten an iron rich meal! The free radical iron poisoning to me is the biggest issue because it causes the brain fog along with who knows what other detriment. When you get your ferritin finally low (below 50) the saturation will finally drop as well, which is a MUCH healthier state to live in.

Hi Fly,

I am in the process of my EXACT diagnosis. My iron is saturation is 85% and iron serum 230 with low UIBC and low Vit D. Weird thing is my feritin was fairly normal at 120...MY genetic test shows I am a carrier but have all of the symptoms of hemochromatosis. MY hematologist said even though it is rare (being a young Caucasian female) it is still possible to have HH or Secondary hemochromatosis. I follow up on Wednesday to discuss the last round of tests and can share more then about what that means.
Best,
Erin

Hello All,

Sorry I missed the last three replies. Thank you all for the info.


Hello Christine,
My mutation is in the 2nd allele???Doctor thinks that it means nothing. Although still feels that plebs are important to get iron down. I,m very happy for that. I had to beg him since no blood bank would let me donate until my doctor wrote the pleb order. Interesting that a mutation originates from Quebec. My Mothers side is from there and fathers from France,



Hello HHselfresearcher,

Very true. They have started to listen. I guess that may have something to do with me freaking out on them and demanding a complete copy of my personal file. That seem to light a fire. I was took honest with the blood bank and told them everything that was going on. They gave me the questionnaire and I wanted to be honest. Because I had not been confirmed with anything yet they would not touch me.


Hi Erin,

With millions of people with this problem I guess there are so many variations and symptoms. I hope you find success in your search. Stay on top of the doctors.

Hello All,


I dod not want to turn this into another blog or change the focus but in my search for answers I have been studying the immense importance of probiotics. Doctors seem to treat illness with such archaic means. The importance of our gut micro biome and how its unhealthy condition leads to disease seems to be the cornerstone of many of the words leading researchers. It seems that we are dealt a genetic hand but whether we get any disease from any week genes is due in a massive part by our gut micro biome. We are not destined to illness because we have a mutation in gene or two. Really hopeful and strengthening info.

Here are a few links for those who have some spare time to get into this topic a little more. I am currently on mega doses of pro and pre biotic from my Doctor treating me like I have IBS. I don't but the boost I am getting from the 450 Billion probiotics I take daily is incredible. Always better to get it from food but this is a quick way of starting off the process and healing any inflammatory issues. Look into the gluten/grain issue as well. I will include a couple of links. Please who are interested look into this. this may help.

Be well Everyone and have great summer.

https://www.youtube.com/watch?v=VvfTV57iPUY


https://www.youtube.com/watch?v=IvUgcLQOUSA



http://www.vsl3.com

Hi all just thought that I should add my findings, I have HH my wife is a carrier, my daughter has bee diagnosed with HH, but my son has been diagnosed as a carrier, but with the rider that he could develop iron overload, already he has some of my symptoms where his sister so far seems to be ok.
So further research has shown that even carriers can go on to develop the full nasty effects of this genetic condition, so my advice is to make sure that close relatives are tested and even if they are only carries tell them to keep an eye on their iron levels, especially if they have any of the symptoms, joint pains, aches in the left hip cramps or burning sensations in the arms and feet, brain fo etc.

vigilance is the key to managing this condition.

Take care

Steve