1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Newly diagnosed HH with C282y

Posted , 8 users are following.

deb94549
deb94549

Hi all...I am very scared. I do not know how long I have had this since my last dr was an idiot. I have elevated liver enzymes but all she wanted to know was how much I drank...I had quit 4 yrs prior. She never looked into it further. Fast forward to 2 months ago my new dr didn't like my levels and sent me for more tests which led me to a hematologist. I have now been diagnosed with HH C282y. My ferritin levels are 3240..yes thats THREE THOUSAND. I had an ultrasound and it showed clear, my blood tests show no signs of tissue damage, no cancer, BUT she still wants me to get a biopsy. I also have to have phlebotomies every week with 500-750 ml taken. I can only handle 600. I feel very tired after. I have heard of people having heart attacks from this and their levers were like 1500. I'm double that! I literally have to drain blood to save my life. I'm getting supplements ( tumeric, calcium, green tea and milk thistle) and going to add baby asprin as a daily pill pack. Anyone else using these and have they helped? Anyone had levels as high as mine? Again, I'm very scared ! Am I going to die? I'm not even 50 yet!

1 like, 32 replies

32 Replies

Next
  • garrett82
    garrett82 deb94549

    Posted

    I have to be brief, but noticed your serious concern. First, take a step back and breath. I know how scary the feeling Is, but you'll be ok. Stay focused on the phleb. I know they drain you, and it will be disheartening at first because, at least in my case, it took a couple months to see results. And even then they were turbulent. But give it time. You'll see progress not only in your results, but in your energy and overall health. Diet change is a necessity, extremely limit if not remove totally greens and red meat. I got to the point of only drinking filtered water. Not even store bottled. And soda, as it naturally irritates your liver. (Alcohol obvuously too, but i figure that goes without saying based on your post). Again, sorry for being brief, but keep your head up, follow doc instructions and in a few months you'll be wondering why you were so worried to begin with!

    • deb94549
      deb94549 garrett82

      Posted

      I can give up everything but the meats and soda.....I can however limit them. Which I have started doing. I had to quit the homemade chex mix, carrots in my salad, and other high iron items. Also been trying to limit my sugar intake. I am gaining weight instead of losing. One thing I am worried about is what this is going to cost me...I had 3 phls now but no billing yet. With having to have 1 a week for 3 months plus CBC and iron tests this could cost me my entire paycheck. Hoping my lovely obama care covers the majority.
    • garrett82
      garrett82 deb94549

      Posted

      Don't get me wrong, I'm an Indiana guy and love my steak. Just try to be conscious about how often I eat it now. And a trick for the cost of phones that I did was donate at red cross or blood bank. That s free, whether they can use your blood or if you are wasting their time, that's another moral issue. But for me, it was a free phlebotomy.

    • garrett82
      garrett82

      Posted

      Phleb* not phone ^ sorry, typing this on my phone. Haha
    • sheryl37154
      sheryl37154 deb94549

      Posted

      It is not recommended to reduce iron in your diet with the exception of taking iron supplements, and fortified foods.  Red meat is ok, and green vegetables are essential.  You need food with iron in it (and the only food you will find with no iron in it is cream, a particular type of cheese made on cream and whiskey, and you can't live on that), otherwise your haemoglobin will get too low and they won't be able to venesect you.

      Natural Iron is an essential requirement for a healthy body.

      Venesection is the only successful way to remove ferritin.  One venesection will remove the iron of 50 red meat steaks, so a few will not matter at all - just not every day.

      I don't know what a homemade chex mix is, but you can keep eating carrots and other veggies.  I avoid starchy veggies because the starch converts to sugar which is bad for the liver and does increase ferritin.

       

  • ruth51315
    ruth51315 deb94549

    Posted

    Hi Deb,

    I refused to have the biopsy on my liver because they are invasive and not 100% safe.  Instead they gave me an MRI scan which IS safe and told them all they needed to know.

    I know all this is scary, but like Garrett said, in a few months you'll look back and be relieved that it all got sorted in spite of that idiot first doctor who ignored your symptoms.

    • deb94549
      deb94549 ruth51315

      Posted

      thanks for responding....an MRI will give the same results as a biopsy? I had an ultrasound and that showed nothing was wrong as well as my blood tests for tissue damage.
  • johan55235
    johan55235 deb94549

    Posted

    Hi Deb when diagnosed at 54 yrs ferritin levels was 3900 now at 69 yrs old ferritin level is 165 with  TFsaturation now 58%.For many years I was led into a false level of security by GPs who claimed my HH was under control if it is below 300.

    My impression of GPs in South Africa concerning HH is low.Only recently through this discussion site was I introduced to the importance of TF saturation.I have taken on myself to become fully in formed on this condition.

    Bottom line you can still look forward to a long life albeit not totally free from all the symptons or the constant needles.Tiredness and weakness are my constant companions unfortunately.My thyroid has been damaged by the iron suggest you have yours checked .Tiredness is also a sympton of an underactive thyroid.

    Curious to know why you take asprin?

    • deb94549
      deb94549 johan55235

      Posted

      Hi, thanks for your response. I'm not taking aspirin yet, was wondering if it was a good idea or not to help prevent heart attacks since my levels are so high. My saturation is 98%. I am all for giving the blood if it brings the levels down, my worry is what's the damage and am I a ticking time bomb with heart failure or cirrhosis

  • Mazza7
    Mazza7 deb94549

    Posted

    No, you are not going to die!  My levels were over 2000 but a friend had levels over 5000 so it varies immensely.  I give 500 ml blood every week and yes, it does make you tired but you can do this more slowly, say every two weeks if you like.  There are very many worse things to be diagnosed with, so just relax and get on with getting your levels down, then everything will be fine.  Honestly! 
    • deb94549
      deb94549 Mazza7

      Posted

      your friend with over 5000, how long did it take for him/her to get normal? And did they have any severe damage or symptoms?
    • Mazza7
      Mazza7 deb94549

      Posted

      She is still giving blood like me, every week.  She is fine, just joint pains but I don't have any, so really, everyone is different.  I think you should not take medications which have not been prescribed as they could do more harm than good.

  • Barb1028
    Barb1028 deb94549

    Posted

    I use turmeric cream it obsorbs better then the pills, I take calcium and drink tea or coffee with meals, they help block the iron. I recently started taking baby aspirin to thin my blood supposedly it somehow releases some of the iron.. that’s a little confusing to me, but it can’t be bad. 

    Hemochromatosis is scary and I had never heard of it till I was diagnosed 2 1/2 years ago.. I go to a hemothologist and he monitors me. I watch what I eat alllllll the time....makes me tired. Keep doing what your doing, it will get better. 

    You now have a qualified doctor so you will be fine. 

  • deb94549
    deb94549

    Posted

    Ok, my ferritin levels May 7th were 3078, after 2 phlb's its 2600, I have had 2 more since that result last week. So if it equals out to about 200 points per phlb, after these 3 months i should be around 200. Trying to think positive!

  • deb94549
    deb94549

    Posted

    I have another question, does anyone here suffer from soreness in the upper thighs? I feel like I have walked 20 miles. Also how long after phlbs do you start to feel better, after how many treatments? I kinda feel like its getting worse....is this the storm before the calm I hope? Any info would be appreciated...so thankful for this group.
    • Barb1028
      Barb1028 deb94549

      Posted

      I always feel very weak afterwards for several days...you have to remember the phlebotomys will make you very anemic.. 

      I am now on maintanance so I haven’t had a phlb in 8 months, but in the being I was weak as a kitten. You can’t feel good when they draw that much blood on a regular basis. It’s not easy, but I guess this is our only option. Stay positive... 

    • garrett82
      garrett82 deb94549

      Posted

      That s strange, now that you mention it, I do remember a soreness in my thighs. But That, as with everything else passed once I got to the 'maintenance' part as mentioned above. Yes, it is the storm before the calm, for me it was 3-4 months, of weekly phlebs, my lab results were all over the place as was how I felt. Then my levels plummeted and leveled off and I feel as I do today. Totally normal. Keep your head up, it may not feel like it now, but you are on your way. Trust me, it's right around the corner!

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.