Compound heterozygous - Upper quadrant pain?

Sorry for the poor grammar, I typed that out on my phone and can't seem to edit the post. predictable text playing up abit.

Because I am homozygous C282Y and my husband is homozygous H63D, our son, of course could not escape being compound heterozygous C282Y/H63D like you. He had a ferritin level of 777 at age 22. TS% was not done back then.

Because it is not as aggressive as C282Y, his ferritin levels, while starting at weekly for about 3 weekly venesections and quickly decreasing frequency, his levels reduced reasonably quickly. He went on to 4 monthly vx, while I am still 3 monthly 20 years later and my husband, least aggressive of all, did not have any further increase in ferritin after being de-ironed (<50).

Our son had glandular fever (Epstein Barr) at age 18 which affects of lot of organs similar to HH (e.g. liver) which may account for his high ferritin level for his age.

While what you have read says 'rarely', it is all very individual, and even some people homozygous C282Y don't load iron, but I have never met one unless they have not been diagnosed. But I believe that when something changes in their metabolism, it will trigger iron loading.

You don't give your age or your gender so I can't gauge whether you are slow loading or not, and have had iron in your organs for a long time. With a level of 250, it is not likely and your symptoms are quite possibly from another cause.

BTW, there is extensive research and stats taken from thousands of C282Y/H63D indicate the result you are talking about. And you don't eat high iron unless you are taking iron supplements and you are eating food fortified with extra iron, e.g. some breads, cereals.

The natural iron in foods are not a problem - it is the way we metabolise it. Our hepcidin protein in our liver does not switch on to switch off the absorption of iron. HH cannot be treated by diet (or tumeric!), so relax on that account.

I have suffered the same upper body pain except on my mid to left side,shoulder, throat, jaw, teeth, etc. so badly I wonder if I should go to Emergency. Finally, sitting upright and slightly forward, getting my husband to slap me on the back, etc, I burp and the pain goes. I don't normally burp which is my problem I fear. Since childhood I have had what I feel is low sugar and start to black out and/or vomit bile unless I can sit down. I now find if I have something little to eat before I get out off bed, it does not happen. I have got to eat regularly. However, all sugar tests are normal! As a child I had to do chores before I had breakfast, and retrospectively I know I that was my problem.

This year while on hols overseas I was eating too much and then going to bed - resulting in reflux. Not good. So I stopped doing that. Also since then, I realised my abdomen was bloating up rather hugely. So I bought everything available over the counter supposed to counteract that. Only small succes (I burped more), so I asked my dr for a script for Motillium. I had read it increases the motility of food out of the stomach and pushed small bubbles of gas through the intestines until it became a large bubble of gas and could be expelled. That has been working very well but I have come to the conclusion that tighter stomach muscles might compress the intestines and not allow them to expand and fill up so much.

Helicobactor Pylori thrives on iron, so seek out a test for that. I have had positive tests for that 3 times and maybe it is back again. Huge doses of antibiotics are the treatment for that.

I have not eaten sugary foods, breads, potatoes and other starchy carbohydrates for years now (some sneak in) because they cause major digestion and bloating problems for me (also terrible fatigue at the table when I do eat them). Research has found that we with HH do have a problem digesting these forms of foods.

So keep up a relentless request for investigations to find out your problem/solution. Do as much as you can to help yourself and tell your dr if it is working for you or not. Even if it is caused by HH, the treatment is the same as if you did not have HH.

Are you having vx? If dr does not agree, go donate blood now and then (3 monthly), but do not mention HH or having high iron or you will be sent away with a flea in your ear. You are donating for the benefit of other people (and yourself).

Let us know how you go.

Thanks for your reply and I have read many of your posts in this area. I am 41, male and have been tested H Pylori which came back negative. Endoscopy showed chronic gastritis but I found Omeprazole caused my hair to thin and bad side effects. Sure enough my vB12 was low as a result. I am taking vitamins for that. I don't eat red meat or high iron foods with the exception of chicken. No cereals. My mother's family has a bad history of cancer and heart disease although she has never had these issues.

Is fasting transferrin saturation and non fasting transferrin saturation much different during the day?