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Hemochromatosis

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Koskyr7
Koskyr7

Hello my friends, I have diagnosed hemochromatosis with 3500 ferritin.. I have done one blood letting so far and doctors said I will do every two weeks blood letting... How long will take to drop ferritin at normal limits??

0 likes, 13 replies

13 Replies

  • tom_70042
    tom_70042 Koskyr7

    Posted

    Hello 

    I was diagnosed at a level of 1200 but my people have put me on once a week, there are wonderful people on this forum who know far more than me but at your level I would have thought you should be once a week 

    Expectations for me are that each phlebotomy will shed 35-50 so it will take me a year at my level to get to a level of just 50 the normal target 

    Good luck with it it’s a long haul 

    I’m sure some of the lovely people on here will give you sound advice too

    • Koskyr7
      Koskyr7 tom_70042

      Posted

      I will let about 350ml blood each time, but last time I had hematocrit 35 so letting blood canceled
    • deb94549
      deb94549 Koskyr7

      Posted

      why was it cancelled with a 35 hematocrit? Mine says once its UNDER 30 and ferritin of 40 to stop.
    • sheryl37154
      sheryl37154 Koskyr7

      Posted

      This is a strange anomaly.  Usually we with HH have a high Hematocrit.  Is your Hb low as well?  This would indicate you are anaemic!!!!  Anaemia can be caused by not eating foods with iron in it - although that is rather difficult because every food has iron in it, with the exception of cream and whiskey.

      Your dr needs to explore further to find out why you are anaemic.  I wonder if you are celiac.  This can cause anaemic even though you have HH.

      Regarding your high ferritin of 3500 - it is definitely usual for at least weekly vx and of the full amount of 1 pint, or 450-500 mls.

      What HFE genes do you have?

      It is  hard to second guess how long it will take as we do not behave textbook.  Your ferritin is likely to go up and down throughout your procedure.  Any inflammation will send your ferritin level up.  In fact, your dr should check if any inflammation, infection, etc. is occurring.

       

  • ellen12819
    ellen12819 Koskyr7

    Posted

    Hello and congratulations you are diagnosed! Now for recovery. How long is a piece of string .... the issue here is ferritin is not the measure of iron but part of the clue. Ferritin can be raised with a migrane the flu or a throbbing ach. Your consultant has the full picture and if he says two weekly then he understands that sometimes the body needs to recover between but every one reacts differently. Trans sat is the truest reading https;//haemochromatosis.org.uk/ you will find the most upto date knowledge here; my consultant said not to google but read stuff here. I hope it helps. The advice on venesections is 100% accurate and doing those simple things before and after really works. They sometimes see how your body reacts then up the vens to weekly or make the gaps bigger. Good luck you are on the best path.

  • deb94549
    deb94549 Koskyr7

    Posted

    hi, I was diagnosed in May of this year with 3025. i did 1 month ( once a week) went to 2600..then another once a week for a month went up to 3175....another month down to 2800, one more month and down to 1901. With you levels you really should be doing once a week or its really gonna take forever! I highly recommend seeing a hepatologist. They will check your liver for storage of iron and see if any scaring has occurred. It sucks my friend, but you are in very good company here in this forum. I'm so happy I found it!

  • Koskyr7
    Koskyr7

    Posted

    Thank you for all answers.. I don't know yet which type of hemochromatosis I have.. I will know at the end of Month.. After my first venesection I don't have measure my ferritin... On Friday I will do the second one after two weeks.. I hope everything will be OK..My Pituitary gland has plenty of iron and my hormones are bad especially testosterone...My heart is OK... Also I try with my meals to drink either green tea or milk

    • sheryl37154
      sheryl37154 Koskyr7

      Posted

      Hi Koskyr, I hope you meant something else because it is not good to have iron in your pituitary gland.  How would they measure it?  Iron in your pituitary gland causes adenomas which upset your pituitary gland hormones badly.

      It happened to me, and it took 6 years for a dr to finally check my pituitary gland hormones, and order an MRI which revealed the tumour (benign).  Nevertheless, it had to be treated forthwith before it increased in size and cause more damage.  Medication worked wonderfully.  I still have to take it10-11 years later.

      It is important to have a good Hb to enable you to have the vx frequency that you need.  Do you know what that is - it will change with each test but only slightly.

      I hope you are receiving hormone therapy (once any problem with your pituitary gland is treated).  It is quite common.  My husband had same problem - he has HH also.

      Also get checked for Vit B12 and Vit D deficiency.  A deficiency in these causes problems too, and Vit B12 and folate helps with restoring well being during frequent venesections.

       

    • Koskyr7
      Koskyr7 sheryl37154

      Posted

      Yes I have done mri at Pituitary gland and I will begin treatment for hormones
    • Koskyr7
      Koskyr7 sheryl37154

      Posted

      I don't know what you mean here '' It is important to have a good Hb to enable you to have the vx frequency that you need. Do you know what that is - it will change with each test but only slightly''

    • sheryl37154
      sheryl37154 Koskyr7

      Posted

      Your dr is reducing your vx frequency because you have a hematocrit of 35.  This is not usual for someone with HH.  Is your haemoglobin (Hb) low too?  A low Hb will cause problems and not allow you to have the frequency of vx that your level of ferritin requires.

      Do you know what your Hb level is, i.e. ref range is 115-160 g/L?

       

    • Koskyr7
      Koskyr7 sheryl37154

      Posted

      Yes my hb Was low too but I think that because I was afraid and reduced my meat meals a lot it happens this
    • sheryl37154
      sheryl37154 Koskyr7

      Posted

      Yes, a big mistake that a lot of people make based on a myths that surround HH.  Go back to eating meat (not necessarily 3 times a day - try other proteins) and your Hb will improve.  Also Vit B12 is found in meat, but a supplement (particularly injections) are beneficial while you are have frequent vx.
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