LAF and H63D gene for hemochromatosis

I have had LAF since 1996 about 8 or 10 episodes. Never lasting more than 4 hrs. I have mostly gone to the ER. Several times they gave me meds to convert and several times I converted on my own. The first time it happened they gave me magnesium to convert.
The last two times I converted just after arriving in the ER ( I take atenolol for the afib. 25 mg in AM and 50 mg in PM). Before going to the ER I took another 25mg of atenolol as my DR said to do and 200 mg of magnesium and 6 oz of low sodium V8,( which I read to do on this board) and chewed a 325mg aspirin.I wouldn't have gone to the ER except I started feeling very light headed and weak.
I left with instructions to see the cardioloigist and take 50 mg atenolol in the AM and another 50 mg in the PM.

I didn't want to see the cardiologist until after seeing my family DR which I did. He said to continue with the atenolol as I was told in the ER.
I have anxiety when I see any DR so my blood pressure goes high so I have been taking 1/2 of a 25mg HCT and1/4 of 25 mg Losartan as prescribed by the DR. because they say I have high BP. At home it is normal and a little on the low side unless I have stress. He want's me to email him a record of my BP taken once a day at different times for a week. Then he will decide if I need to see the cardiologist. Said they might change my meds to flecinid4(sp) if I can tolerate it and warfarin. I don't want to take either. I am very sensitive to meds. Have strange reactions. Would like to get off of all the meds.

My question is which way of eating should I follow. I haven't eaten anything knowingly with gluten for over 5 years.
My dilema is eating for afib but not letting my ferritin go higher. It is 605. The cardiologist said not to worry unless it goes over 1000. I have read others that disagree.
I know paleo is best for afib but not for hemochromatosis. Blood type says both have been helped with the blood type diet or geno type. I am blood type B.

I know several of you on this board are very good authorities on what works. I would appreciate any help that you can give me.
I must say when I have had a fib I have really pushed the limits on what I should not eat.

By the way I am 76 yrs old 5'9" and weigh 175. I know I should lose some weight. I take B12 because my B12 level was to low. I now have it in the normal range after taking it for a month. My vitamin D is also low.

Thank you for any information that you can give me. I have been reading this board for several years and I know you give good advice.
Maryann

Maryann,
See following link for Mayo Clinic limits on ferritin:

[www.mayoclinic.com]

My ferritin was in the high 300's low 400's. I tested negative for hemochromatosis, but eventually I got a prescription for a series of phlebotomies. I think I pulled out 6 pints of blood in 7 weeks. My ferritin got down to about 50. What I noticed most was a sudden and unexpected improvement in my knees. Clearly I was experiencing less inflammation.

So....if you believe that afib is a manifestation of inflammation encouraged by nutritional deficiencies (e.g. Mg) and toxins(e.g. excess Fe) I would get a prescription for therapeutic phlebotomies and have one every few weeks until ferritin is below 100. It will lower inflammation and even if the effect is small every bit counts.

John

Ps--anxiety may suggest magnesium deficiency. Get some magnesium oil and spray it on with enthusiasm.. The worst that happens is your skin will get smoother.

Maryann.... your high ferritin is alarming. Most doctors feel that under 100 and closer to 50 is an appropriate number. In the archived posts, one of our former afibbers (Isabelle) is a hemochromatosis expert. Do a search for her posts and advice. The people I know with hemochromatosis all have been directed to have regular phelebotomies until the ferritin levels are down to at least 100. Please give this your immediate attention. It would also be good to address your low B12 and low vitamin D. Do you know your homocysteine number?

Jackie

Maryann, this isn't what you asked about but I have to jump in. When I was diagnosed with afib, the first thing they did in the ER (after converting me with cardizem) was tell me to stop taking the 10 mg HCT that I'd been on for 4 years. I remember the EP's quote: "Cardiologists hate that drug." I've since learned that HCT depletes potassium which was interesting because a routine blood test a few months before my afib diagnosis showed my potassium was low so the doctor put me on 3 10 mg EQ potassium pills a day. When they checked my blood at the hospital, my potassium level was still low. If you are going to keep taking HCT, I encourage you to monitor your potassium levels and supplement if necessary. That could be part of your issue.

Jackie,
No I don't know my homocysteine level. I checked my blood tests for the last several years.

The hematologist said I shouldn't be concerned with my ferritin level unless it was over 1000. The one copy of the allel detected has not been associated with symptoms of hereditary hemochromatosis. I have read elsewhere people commenting that it does make a difference in how you feel. As John says above.

I am so confused as to which way to go. Eating so as not to raise my iron or eating paleo for afib?

Thanks everyone for your comments.
Maryann

Maryann, Isabelle is our resident Iron overload guru but she appears not to have her ears on at the moment so.... I have never been diagnosed with HH but I am compound heterozygous with having both the H63D gene and the C282Y. My brother Who has the same genes as me did get an HH diagnosis along with porphyria. I don't know why your hematologist says you are in no danger til you get to 1000 The CDC say's that 300 ng/ml is the upper limit of allowable ferritin in the blood Iron overload diagnosis. Check the site about some of the complications of having too much Iron which you obviously qualify for if your ferritin levels are getting over 300 ng/ml.CDC about hemochromatosis

Some more sites to look atIronoverload.org and irondisorders.org

Maryann, Please get a second opinion as there is really no need to continue damaging your vital organs with high Iron which is so easily treatable with regular phlebotomies. At the very least one could donate a pint at the blood bank but at age 76 I don't know if they would accept you.

Read up on hemochromatosis and arm yourself with the knowledge to advocate for your health.

As Jackie likes to quote "knowledge is power"

Adrian