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Venesections not working

Posted , 10 users are following.

Alenaorr
Alenaorr

Hi I've been following this forum for a while now but this is my first time posting. I was diagnosed with HH 4 months ago and my level was 1270.

I started fortnightly venesections and got my levels checked again after 2 - my level had gone up to 1290! My consultant told me not to worry as this can happen at the start and he said he wouldn't check again until after my fifth.

After the fifth I had gone down by 70 to 1220. He said he was a bit disappointed it was such a small drop but he was hopeful it would suddenly plunge down.

I've kept going but this morning (after my 8th) they told me my levels are up again to 1299 :-(

Im so disappointed and worried that it's just not working for me :-(

I am so tired ALL the time and I have joint pain most of the time. Getting the venesections is no problem but I feel horrible for days afterwards - I just accepted this as part of getting better and getting rid of the iron but hearing today my levels have gone up again has just made me feel so flipping sorry for myself :-(

Just wondering if this has happened to anyone else?

1 like, 11 replies

11 Replies

  • Mrs._Z
    Mrs._Z Alenaorr

    Posted

    I had slight increases in my numbers but nothing like you're experiencing.  I was able to be deironed in less tha six months but had weekly venesections.  I also watched my iron intake -- stopped eating cereals or anything fortified and red meat primarily.  Also avoided anything with vitamin C and definitely not taking any vitamins with added vitamin C.  The other things that can add to iron absorption is alcohol and sugar, so by avoiding those things may help in the absorption.  You can have high calcium items which I don't believe contains any iron.  I know some don't agree with diet restrictions, but I believe you have to find what works for you.  

    I would think you'd want to see if you Dr. could run weekly venesections or even bi-weekly in an effort to get you deironed as quickly as possible.  And most of all, keep a POSITIVE attitude and know you are not in this alone!!!  The other thing we have learned is that we are all different and how our body reacts is also different so you have to keep trying to see what works for you.  Good luck  

    • Alenaorr
      Alenaorr Mrs._Z

      Posted

      Thanks so much for your reply. I honestly don't know how you tolerated weekly venesections - I find it takes me a fortnight to get over one! Were you not just exhausted all the time?

  • joyce1959
    joyce1959 Alenaorr

    Posted

    Hi, so sorry to hear your plight, but don't worry ferritin levels quite often go up, mine have! Ferritin is also an inflammatory marker in the body and can often be raised with a simple cold or inflammation somewhere. What's more important and what shows a more accurate picture is your transferrin saturation, have you had this done recently? Please don't be downhearted it has to drop eventually, then you will start to pick up. I was so unwell I thought I could never improve, I had depression with it too, but I'm getting there. I'm c282y x 2 started at 950 last September now down to 305 on last vs after going up and down.

    • Alenaorr
      Alenaorr joyce1959

      Posted

      Thanks Joyce. To be honest I don't really understand the different terms very well. I just know about the levels I.e I started at 1270. I will ask my doc to explain it to me next time I'm there.

      Thanks again for your reply

    • joyce1959
      joyce1959 Alenaorr

      Posted

      It's a bit complex but, Transferrin saturation, measured as a percentage, is a medical laboratory value. It is the value of serum iron divided by the total iron-binding capacity. Of the transferrin that is available to bind iron, this value tells a clinician how much serum iron is bound. For example mine was 95% at the start as I was loaded with iron, it's now down to 35%. So regardless of what your ferritin is, the focus is on the transferrin saturation. Hope this helps!

  • sheryl37154
    sheryl37154 Alenaorr

    Posted

    Ask your consultant to investigate why this is happening.  Make sure you do not have something else going on causing infection, inflammation, malignancy.  Ask for a C-Reactive Protein test to test for inflammation.  How is your liver - at the very least you probably have fatty liver which does not show up in blood tests.

    Generally, with ferritin that high, weekly venesections are done.  It may depend on what HFE genes you have, which you have not mentioned.

    There is someone who regularly posted with this problem but he has some severe inflammation issues.

    I was severely tired all the time (like staggering and slurring and wanting to lie down and go to sleep on the floor/ground/under my desk) plus all over body pain for the 9 years leading up to my diagnosis.  Venesections do not make me tired (check what is happening with your Hb), but the all over fatigue and body pain did not go away.  I am so glad to front up for a venesection to get that toxic stuff out of me.  Only  able to get by after I had to give up working.

    But that was because of the delay in diagnosis and the damage done during that time - everyone is different.  So don't be put off by my experience.  Take note of advice given by Mrs Z, although I still eat red meat.  It keeps my Hb up.

    Good luck with it.

     

  • bruce97898
    bruce97898 Alenaorr

    Posted

    I hear that. I think we all go through it. First, remember that the venisections remove iron and ferritin is processed iron and has gone through processing. There is a more complex process behind it from removing iron translating into lowered ferritin, so don't get discouraged. Your body may be creating more ferritin as a first response to lower iron. You may have to go weekly a while. Also make sure you read all labels to avoid high iron foods. Cereal is sneaky for example. So is bread.

    As far as fatigue, I was nearly crippled by it until I cut out processed sugar and flour. Start experimenting with diabetic recipes and paleo diet recipes. You will keep the fatigue away.

  • peggy96967
    peggy96967 Alenaorr

    Posted

    After my 1st 12 phlebotomies, my ferritin went from 1,000 to about 1300. with the saturation going from around 70 to close to 90.  After 2 more years of bi-monthly and then monthly phlebotomies, the ferritin is now down to 30 with the saturation % being 12.
  • peggy96967
    peggy96967 Alenaorr

    Posted

    After my 1st 12 phlebotomies, my ferritin went from 1,000 to about 1300. with the saturation going from around 70 to close to 90.  After 2 more years of bi-monthly and then monthly phlebotomies, the ferritin is now down to 30 with the saturation % being 12.
  • Tina_72
    Tina_72 Alenaorr

    Posted

    Hi I'm going through the same my levels don't seem to be coming down its getting me down I'm really tired and knees aching I was wondering if I was eating the wrong things.

  • peekay
    peekay Alenaorr

    Posted

    My doc told me to expect 'odd' numbers. Even though you're having blood removed, you're body is just replacing the removed red blood cells from stored iron. So you are actually losing iron from your liver, just not from your blood yet which is what is tested. Sometimes your body overcompensates for the loss and that's why numbers can go up. She said that once all of the stored iron is used up that's when the numbers should continually drop

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