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Trying to help my husband with poss haemochromatosis

Posted , 5 users are following.

famof10
famof10

Hi everyone, I was hoping someone could offer advice. My hubby is 40 & has been long suffering from many of the awful symptoms you all have been having. Earlier in year his ferritin was mid 300's BUT his Rheumatoid Factor was high at 21. A few months later it was still high at 20. His doc said not to be concerned. Also, he didn't suggest HH, we stumbled across it. I wondered about blood work though - he's had this very slow climbing ferritin for quite a few years. And he also had Rheumatoid Factor come back earlier in the year at 21 and months later at 20. The increasing joint pain caused him to see his doc again last week. Blood work last week was 412 Ferritin, CRP 9.9 (high) BUT RF 10 (Normal!). Doc sent him for Anti-CCP which was negative! The doc seemed to think RA but now??? Symptoms are: months of heart palpitations (cardiologist said heart is fine), extreme joint/leg pain/hand pain, pain on tops of feet, fatigue, headaches, most recently pupura/petechiae looking marks on legs/arms, small/hard pimple like bumps on palms of hands. I've noticed his snoring/breathing at night is outrageously loud & it seems as though he's struggling to get air, he's always had it but its worse then ever esp with his sore throats he seems to keep getting. He's 6'4" about 210, active & otherwise in great health. Non-smoker, never drinks alcohol. He sees the Rheumatologist to discuss these new blood values. Anything I should tell the doc or ask? Can I give him anything vitamin/mineral wise to help him while he is waiting to see the doctor? I've stopped him from drinking/eating Vit C, boxed cereals, red meat (I've read it can be bad). Anyway, I'm sorry to see any of you having pain or feeling sick...I'm just hoping someone can share there thoughts. I'm so confused I don't know if its normal to have the RF fluctuating & if it's part of the disease. Or if the CRP usually is high with HH. His baseline blood work looked good though. Thanks again for any help at all!

2 likes, 6 replies

6 Replies

  • famof10
    famof10

    Posted

    Oh yes...I know to request the gene test to see if he is a carrier, if the doc doesn't send him for it. I don't know if heritage makes a difference. I know he's hungarian, some german, some scotch. We've got 8 kids, and reading other's posts it seems they will all have to be tested, poor babies, praying none of them have this!

     

  • mike80628
    mike80628 famof10

    Posted

    Hiya. The number one thing for you to do now is get tested for Haemochromatosis asap. If positive, then you need to start the venesection treatment. My level was 2000 a year and a half ago! It's now between 10-20. I eat normally, a little red meat from time...the secret is to eat fairly normally but have plenty of calcium when eating, either milk or supplements, and tea, and turmeric, they all help prevent iron absorption.

    Your husband's ferritin is a little high now, but not too horrendous at the moment. Also, having arthritic pain can raise ferritin levels on its own...any inflammation in the body raised the ferritin level. So, check to see if he does have hh first of all, and take it from there.

    All the best. Mike.

  • Barb1028
    Barb1028 famof10

    Posted

    I think he should check with another doctor about his ferritin, mine started at around 300,I was sent to a specialist and have phlebotomy's every two or three weeks. I started with a gastroenterologist and have since switched to a hemothologist.

  • sheryl37154
    sheryl37154 famof10

    Posted

    A telling marker for haemochromatosis along with high ferritin is a high Transferrin Saturation %, e.g. >50% for male.  If his is not high it is unlikely he has haemochromatosis.

    As his CRP is high, it is an indication of high inflammation in his body, which increases ferritin.

    Antioxidents (Vits ACE) are important to have for high inflammation.  Sleep apnea can cause very bad health issues.

    How is he with sugar and starches, e.g. potatoes, pasta, bread, etc?  He may have a fatty liver, and eliminating these from diet will help reduce fatty liver.  Replace the starches with lots of greens and cauli, and have some protein with each meal/snack, including breakfast instead of cereal.  Red meat is not a major problem with haemochromatosis - just not every day.

     

  • famof10
    famof10

    Posted

    Hi Everyone! Thanks so much for the replies! Great suggestion on the diet - he loves the 'bad' stuff but eats very healthy. He has no problem cutting out the bad stuff cause I usually cook so he doesn't have to 'think' of iron/non-fatty foods to cook himself. Hasn't drank alcohol since he was in his early 20's & even then it was on holidays. So from what I read that really, really helps. Again, I'll keep you all posted about Mondays appointment. Cheers!

  • Ssouth1984
    Ssouth1984 famof10

    Posted

    Any update on your hubbys situation? My brother is experiencing the same issues as your hubby and I'm curious if he got a confirmation of HH?

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