Genetic Test Results

You have what's called "compound heterozygous", which is the 2nd most likely cause of iron overload hemochromatosis behind only C282Y homozygous recessive.

At 860 ferritin, i would be concerned and want to begin being treated. I was diagnosed C282Y homozygous with 950 ferritin, so you're not far behind at all.

anny...what diet changes did you make? thats a huge drop...

If you had liver issues, then most likely your high ferritin was caused by these. Also you did not say what HFE genes you had, which can make a difference. Your diet would reduce and 'cure' a fatty liver, i.e. elimination of sugars and starchy carbs which will help reduce ferritin.

However, research has found that reducing foods with iron in it makes very little difference to uptake of iron. Besides, every natural food has iron in it with the exception of some cream cheeses and whisky and we can't survive on that. We also need natural iron to keep our Hb in a healthy range.

Calcium is the only 'food' proven to reduce the uptake of iron, but be careful of when you take a supplement as it can also reduce the uptake of other important minerals. We do like to feel proactive by drinking tea, coffee with meals, eliminate high vit C fruit juices, and a small glass of red wine for its polyphenols. Whole fruits and vegetables high in Vit C are ok because we are not normally going to eat the same amount that are in juices.

Antioxidents ACE are very important, so I take my Vit C last thing at night otherwise with my damaged immune system, I end up with a sore throat/cold etc, which will increase my ferritin level anyway.

Cooking from scratch is a huge benefit as most often packaged foods contain added iron, salt, sugar, etc. Also, multi vitamins should be checked for the inclusion of iron. This I expect that you have done and if you were taking them before, elimination will make a big difference.

You are doing so well treating your liver, but I would like to hear more detail regarding your HFE genes, and your TS%, the level of which can make a big difference too.

Educate yourself by reading medical research rather than blogs so that you know more about haemochromatosis than your dr does. That way you can be proactive. I record my bloods and vx on a spreadsheet so that I can see how it is trending. (Been doing this for 22 years now). You can add a small note about how you are feeling or anything that was different to normal.

Have a vx after a meal, failing that at least a snack. Lots of water, although I find that as soon as I drink water, I pee it out. Have since read that drinking milk (I drink soy) watered down contains some substance that remains in your system. You might find some alternative that suits you but beware of all the sugar in a juice.

Don't get hung up on health issues that occur from having haemochromatosis and want your dr to treat it differently because you have GH. Just keep having your vx regularly, and get the health issues treated in the normal way as if you did not have GH.

Contact your country's haemochromatosis association for all the information that they make available to you. If your dr does not seem to know what you know, give him printouts, booklets, etc from the assoc.

I have 3 monthly vitamin B12 enzyme injections even though my blood level is within the reference range, and also Vit D3 forte drops because my body does not absorb Vit D from tablets (or the sun). When my blood got thick and hard to vx, I started taking 100mg aspirin a day.

Feel free to ask further questions as they arise.

Are you stuck in Spain because of Covid-19? We were planning to go to France in May, absolutely everything prepaid except for meals and incidentals. Now will have to fight to get refunds as travel insurance won't cover pandemics and CV. The world will be in a mess for a while.

Good luck with your treatment.

Hi Sheryl

wish i had known many years ago like you. I have had AF for about 8 years now . i had to have a cardioversion last year followed by a second ablation and i found out i had HH after more thorough blood tests towards the end of the year.

I agree that medical info is the way forward and yes i do keep a record of all my tests now so i can see how i am doing. if we don' t do it noone else will!

I do take BP meds and an anticoagulant so am careful about supplements esp now i know i have HH.

I expect i will learn more as i get into regular phlebotomy. i will ask for blood tests to include vit and mineral levels so i have a better idea if the balance is right.

please tell me what is vx? Not up to speed with all the jargon yet!

I am lucky to have a little house in Spain so it is like home from home but yes we are on lockdown due to coronavirus. we have a flight booked back to UK but not holding our breath it will take off, not so important as we are retired. I have hospital appts mid April but who knows it may be better to stayhome than risk that environment.

My HH journey is much older than my diagnosis. I had to have a hysterectomy at age 39 and I immediately started loading iron. However, it took 9 years of severe symptoms to be diagnosed which occurred when one of my hips broke up from avascular necrosis. My blood was so thick with iron particles that it blocked the finer capillaries that fed the bone, so the bone died. After replacement, my other hip broke up too. I was so severely tired I was staggering and slurring, constant chest pain for 12 months, and all over body pain. Google did not exist back then. The chest pain gradually dissipated with vx. The fatigue and body pain never left me, but after having to give up work, it is easier to cope with. I have short days.

Vx is short form for venesection. I don't understand why you were informed to drop tomato sauces. It is not in my hemochromatosis cookbook produced by a member of the Iron Disorders Organisation. It has Vit C, yes, but it is made from whole fruit. While I don't use the recipes in the book (it is American), the book is very informative about why various natural foods are ok to eat. They have their own built in iron uptake reducer enzymes and minerals.

Be aware that any infection/inflammation will increase your ferritin level (even a 'simple' cold), then reduce when that issue is cured. You have a hard decision to make - once you leave Spain you may not be allowed back for an indefinite time, and the UK looks like it does not plan on doing any containment. Taking Vit C is more important than getting any infection.

Good luck.

In my book it says, cooked tomatoes (which are high-acid) become high in iron if cooked in an iron skillet/pot, same as any food cooked in an iron pot. Cooked tomatoes become high in beta-caratene compared to fresh, and b/c "significantly increased absorption of the metal. B/c generally overcame the inhibitory effects of phytates or tannic acid depending on their concentration." However, b/c is an excellent anti-oxidant and naturally occurring b/c or vitamin E (and C) in foods should not be restricted from the diet." But they don't become higher in iron, except when they absorb iron from an iron pot. Tomatoes have 0.4 nonheme iron per cup and 17.0 Vit C compared to white potatoes being 0.8 and 26.0 milligrams of Vit C but heaps more carbs/sugar. So it is up to you to decide if you don't mind a smidgen of extra iron, compared to the health benefits of b/c.

The highest heme/nonheme iron is in clams - a whopping 10/15 per 3 ounces!!! It is so high I think it is a typo. So if clams are in abundance where you live - take care in case it is true. In comparison, the dreaded liver is 3/4.6, compared to 3 ounces of tender loin which is 1.35/1.3 which is the highest of other red meats. Venison is higher though.

A vx removes the equivalent of about 50 steaks so there is no worry about eating red meat while having vx, which in your case is not yet happening.

Regards