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Ferritin levels stagnated

Posted , 8 users are following.

Katy8103
Katy8103

hello

I was diagnosed with GH back in June 15. At that point my ferritin levels were 765. I started fortnightly venesections immediately and after the first two my ferritin dropped to 441. Since then my ferritin has stubbornly stagnated and even increased slightly.  My ferritin is now at 422 after 13 venesections.  

The nurses are telling me that it will come down and I shouldn't worry but I can't help but think that there may be some other reason it's not coming down, like an underlying infection or something. 

Has as anyone experienced this? Do I need to stop worrying and just plod on with the venesections? 

Many thanks

Katy

1 like, 16 replies

16 Replies

  • hemopatient123
    hemopatient123 Katy8103

    Posted

    This is interesting. My gastroenterologist was very skeptical when I told him I was being treated by my hemotologist with venesections as a compound heterozygote with a 900 ferritin and somewhat normal saturation %. He told me would know whether it was truly just the iron causing the elevated ferritin by my response to venesections. He drew me a chart showing me that it was likely my ferritin was elevated due partially from iron and partially from another cause related to the liver. He felt I would plateau at some point as venesections would not help further, similar to your story. He also mentioned the venesections would cause me to be severely anemic at the point where the venesections no longer were having an impact on ferritin. He wanted to do a liver biopsy initially to determine this potential other/secondary cause of the elevated ferritin but I decided not to go for it until we saw my full response to venesections. We agreed though that if I did plateau, I'd allow him to do the liver biopsy. I never plateaued and my ferritin came down steadily with only 9 venesections needed and the biopsy was not needed.

    You are on the cusp of this situation however. They say venesections will reduce ferritin on average 20-30 each time so you still fit within that average for now. If your hemoglobin is still above 11.0 (hematocrit above 33.0) then I think you must continue on. However if your hemoglobin begins to drop too far, you may want to stop and ask your doctor to do a liver biopsy to look for other causes.

    • sheryl37154
      sheryl37154 hemopatient123

      Posted

      Try to avoid a biopsy, it is very unpleasant and often unnecessary.  A fatty liver causes high ferritin, if it is not from classic haemochromatosis.

      You don't have to become anaemic as a simple haemaglobin test (pin prick) test can be performed before each venesection if necessary.  If you are below 11.0 as hemopatient says, refuse the venesection.  Come back another time (perhaps a week late) to try again.

      If it is a fatty liver, eliminate sugars and starches in your diet - it is not from consuming fat.  Google 'reducing inflammation' and there are some very good tips for reducing hidden inflammation.  Aspirin is anti-inflammatory.

      Anti-oxidents are important and vit C is one of them.  You will have been warned against taking vit C but if you take it between meals or late at night when your stomach is empty, it is safer.  Iron is absorbed at the duodenal level.  Reduce your uptake of iron by drinking tea, coffee, milk, eating dairy (yoghurt, cheese) during and with meals.  Take calcium tablets then too.

      Vit D and B12 should be checked.  If vit D low, take D3 forte drops, and injections for B12 are necessary if your level is very low.  Tablets don't work for some people in these cases.

      There is new support given by haemochromatosis nurses at a site called GHANDI.    I have not joined yet so I don't know how good they are.  I find if you don't have it, you don't really know enough about it.  It is in the interest of people with haemochromatosis to self-educate.

      Let us know how you go.

       

    • Katy8103
      Katy8103 hemopatient123

      Posted

      Thanks for the reply.

      i have my blood results here. My haemoglobin is 12.5 and haematcrit 37. I've been having problems with my hb and they've had to reduce the amount of blood they take from me. So I now have 300ml removed every two weeks instead of 475. This seems to have helped in this respect. 

      The fatty liver possibility is interesting. I will mention it to my consultant but I think you're right. I just need to keep on with the vs for now. 

      Just for for info I am a homozygote cz28y. My TS% at the start was 78 and they haven't checked this since. 

      Many thanks

      ​katy

    • haircrazydaisy
      haircrazydaisy sheryl37154

      Posted

      Sheryl, I find your posts fascinating and very helpful, thank you.  I know that you have written what the ideal TS level should be but I can't find it after scouring the site.  I probably can't see for looking!  I've now had 3 venesections and my ferritin level is now down to 40 but my TS is 44 and this has gone up.  Is this a good level despite it rising?

      Thank you :-)

    • sheryl37154
      sheryl37154 haircrazydaisy

      Posted

      Where I come from the normal range for TS% is 15-45%.  If you check your copy of your blood results, it should show the normal range for where you are.

      It sounds like your HH is not aggressive and you have got your levels down quickly.  But make sure they are being monitored regularly.

      This is not necessarily the same for all C282Y/H63D.  My son is the same, and he has to have ongoing venesections, every 3-4 months.  My husband is H63D/H63D which is more milder, and no longer has venesections for years now, but is still being monitored every 6 months.

      And I have no doubt mentioned a hundred times before, I am C282Y/C282Y and whatever it is that makes it aggressive.

       

    • haircrazydaisy
      haircrazydaisy sheryl37154

      Posted

      Thanks, I will indeed make sure I'm being monitored as I don't want the symptoms to get worse.  I see the consultant again in December so I'll query the TS level, then.  The nurse said that I'll probably have venesections every three months, now, unless levels go up again.

      It's funny how no two sites seem to say the same thing re how aggressive certain combinations can be.  It seems to depend on how old the sites are - the only thing they agree on is that your combination is very aggressive.  The Canadian site seems to be the most up-to-date and says that C282Y/C282Y is most aggressive and potentially C282Y/H63D is also aggressive.  I found a site dedicated to H63D - it was saying how little is known about it - they called it, "the other gene" - and said it was most likely to cause neurological problems without being noticed because ferritin levels remain low.  A potential can of worms! 

  • sheryl37154
    sheryl37154 Katy8103

    Posted

    I have not had that problem but I have had my ferritin suddenly increase despite venesections.  I had a cold/flu at the time and apparently that is enough to increase ferritin.  Although my haemotologist at the time stepped up the venesections, I think it was unnecessary as it would have fixed itself and I ended up being over venesected.

    An important marker is your TS%.  How high is that?  Does it stay high, or does it fluctuate?

    After quite a few times when my blood was so thick and black and hard to venesect, I decided to try aspirin (100mg daily).  That got my blood flowing, reduced my serum iron and TS% for the first time (my ferritin was already low).  It felt like it unclogged deposits of iron in my capilliaries or wherever and reduced the inflammation pain and and fatigue I was chronically feeling.

    You might not think it is relevant to you but if the stagnation continues, it might be worth a try.

    Don't worry or ask for a C- Reactive Protein test for signs of inflammation, and definitely keep plodding on with the venesections.  They are much better than having chemo.

    PS:  I am in my 17th year of venesection, and 26th year since onset of symptoms.

     

    • Katy8103
      Katy8103 sheryl37154

      Posted

      Hi sheryl

      thanks for replying.

      Interesting what you've said about the aspirin. I don't think I have a problem with thick blood as it seems to flow out quite nicely. But if I have some sort of inflammation it sounds like it might help. 

      As mentioned in last response my TS%  is 78 and they haven't checked this since the start. I think I can request this though. 

      My my ferritin shot up from 400 to 477 in October and has been slowly coming down since then so I wonder if I had some sort of infection which caused this. I think I did have a little cold. 

      I will certainly keep on with the venesections. 

      Many thanks

      katy

       

    • sheryl37154
      sheryl37154 Katy8103

      Posted

      Katy, I have recently read a study which found a correlation between taking St Mary's Thistle and difficulty in reducing ferritin levels via venesections.  Google "St Mary's Thistle and Iron Overload" and you should find it to read for yourself.  They allow a down load of the full paper too instead of just the abstract.

      Check to see if you are taking a supplement with this stuff in it.  I was, in a liver tonic capsule.  So decided to stop using it for a while.  While my ferritin levels always (almost) come down 24-25 units, my TS% is always high, so it might make a difference to that.

       

  • marie86421
    marie86421 Katy8103

    Posted

    Hello Katy8103

    Don't worry too much about your ferritin not budging after several venesections.

    This happened to me and for weeks I was concerned that after many venesections my ferritin was not coming down, just staying at a certain level.   Then, all of a sudden, there was a big drop and it continued to drop.

    I put it down to the fact that I had overloaded iron in my liver and that iron was being drawn out of the organ and causing the plateau effect with my ferritin.  It took me three and half years to get my ferritin down to normal levels.

    Best wishes

    Marie 

    • Katy8103
      Katy8103 marie86421

      Posted

      Hi Marie. Thanks for your response.

      its reassuring to hear that you experienced the same thing but it eventually dropped. How long did you experience the stagnation for? 

  • Mr_L
    Mr_L Katy8103

    Posted

    Hi Katy

    I'm also undergoing venesections and have had some periods of time where my ferritin hasn't dropped or slightly gone up.  I get the impression most have significant drops at the beginning and then the fall in level is much more gradual. Also it is not uncommon as myself and others I've come across have had slight increases on occasions.  I got stuck in the 400s and then suddenly my ferriten dropped by 90 after one venesection.  

    I also had trouble with my Hb level quite early on but instead of reducing the amount of blood removed I just had my venesections scheduled fortnightly rather than weekly.  I wonder whether the smaller amount of blood being removed has contributed to the slower progress for you.  

    Has your ferritin now dropped into the 300s or lower?

    Simon  

    • Katy8103
      Katy8103 Mr_L

      Posted

      Hi Mr L

      Since I posted this I've had two venesections. My level went down to 390 but then shot up again to 445.   It's now higher than it was in mid-July.  The smaller amount of blood may be slowing it down I guess. I just can't help but think that something underlying is causing it to stagnate, just don't know what it is. 

  • stephen-or-doug
    stephen-or-doug Katy8103

    Posted

    Hi Katy,

    I was diagnosed with Haemochromatosis around Easter 2014. My ferritin levels were much higher than yours to begin with - 3096 at the start, but now after more than a year of venosection they are down to less than 50. I was able to tolerate the venosection a bit better than you, so for about 4 months I was actually venosected at 450ml twice a week (Tuesdays and Fridays) - it took 52 venosections in all to get my levels down. During this process, my ferritin levels jumped around quite a lot - and there were quite a few times when it appeared to go up, rather than down. So don't despair - just hang in there!  Note that your transferrin saturation will stay high until your ferritin is more normal.

    Good luck!

    Stephen

     

    • megan1976
      megan1976 stephen-or-doug

      Posted

      Hi I was diagnosed with GH in February 2016 my level was 4916. I went almost every week to dot blood withdrawal and in May it as a little over 2000. Now I just got it tested again and it's back up to 4291. It is discouraging but reading your post helped. I have two copies if C282Y I have read it's aggressive.

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