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Drop in ferritin given iron tabs

Posted , 4 users are following.

Chelle69
Chelle69

I have just had my 3 monthly blood test for HH ( I’m homozygous C282Y)  I’m in maintenance at moment and my ferritin dropped massively after 7 venesections to just above 20, I’m feeling fatigued with headaches weak legs etc most days. One of the GPs in the practice has prescribed me Ferrous fumerate ( iron tabs) but not sure if she realises I have HH?? I have an appointment with GP on Monday but not sure wether I should take these iron tabs or not? so I haven’t taken any so far.   Just wondered if anybody else has been in this position and been given iron tabs for low ferritin with having HH?  Thanks everyone x

0 likes, 5 replies

5 Replies

  • ellen12819
    ellen12819 Chelle69

    Posted

    Hi there, Chelle69.

    You do not say what your HB is? Once you are in maintanence you need to eat a balanced diet. Occasional red meat and all the veggies. Not white flour based foods ever (but whole meal) not raw fish/or seafood those are no nevers. But the rest, yes. We need iron to live it oxygenates our blood. If you kept your pre mainanence diet up once the stored iron had gone you could be aenemic. You can phone and speak to your doctor if you doubt the perscription or wait. If I knew your hb I could say for sure. Do not worry to much or that will make you ill. Take care.

    • Chelle69
      Chelle69 ellen12819

      Posted

      Hiya 

      Thanks for getting back in touch Ellen. My HB is 143, does HB make a difference? you seem to know much more than me about it than me, I only know bits through what I've read on google!

      I'm eating a balanced diet and having red meat, veggies etc, I never really changed my diet even when I found out I had HH so it's always been the same.  Hope your doing Ok?  

       

    • ellen12819
      ellen12819 Chelle69

      Posted

      Hi Chelle69,

      HB must be between 115 and 155 so I really am not understanding why you would be given iron. Stop googling use only this link to check symptoms or for the latest news and answers. It is the resource that the consultant told me to join . Good luckk I hope you feel better soon. I would be asking for a vitamin and mineral check a simple blood test. I was hurting, light headed confused and exhausted. It was low vit D and b12. I am not a doctor but I would not be happy unless I understood why they wanted me to take iron. https://haemochromatosis.org.uk/

    • sheryl37154
      sheryl37154 Chelle69

      Posted

      I am glad to hear that you did not change your diet (if it was good) while having vx - it is not recommended by medical researchers.  That is why you still have a good Hb.  A low Hb will make you feel like you are feeling so bad but that cause can be eliminated.

      Is your TS% still >45%?  Did your haematologist reduce frequency as your levels got lower?  Have you had your Vit B12 and Vit D tested?  Both of these have a major impact on the body if they are deficient.

      If B12 is low, ask for B12 injections (which work better than tablets).  Perhaps even having a course of injections even though your levels are ok will be good for you.  Some people need more.  I have one every 3 months now even though I have long been de-ironed (<50).  In fact my ferritin ranges in the low 20s, eg. 21 and it has no impact on how I feel.

      A practitioners' brand Vit D3 forte drops work better than tablets also.

      However, I had a high TS% for many years (20) even though I had been de-ironed which I have now come to believe it caused my continued fatigue and body pain (as per researchers in Rennes, France).  I have continued with my 3 monthly vx and finally my TS% is hitting the normal range now and then and I am starting to feel better.

      Your ferritin of 20 is not a problem - you should not be compared to those who do not have HH.  It is important to keep up maintenance to keep those low levels.  I have had a ferritin of 8 with no problems.  It is not recommended to take iron supplements.  If you really want to increase your iron levels, have some Vit C with your meals for a little while, but monitor your levels and make notes about how you feel.

      Your dr needs to look elsewhere for a solution to make you feel better, eg. your Vit B12 and Vit D.  I wish I was told about those vitamins in the early years.  Even though you eat meat, some people just do not absorb Vit B12, my husband does not (he is homozygous H63D, while I am homozygous C282Y) and I don't absorb Vit D, even though I live in the tropics (plenty of sun).

      Also have your pituitary gland hormones checked.  Mine changed dramatically because it was finally found that I had a small tumour on my pituitary gland.  Also HH is a hormone thief.

      Good luck.

       

  • Chelle69
    Chelle69

    Posted

    Thanks for your replies ladies.  I will be asking GP to check my vitamin levels for B12 & Vit D and find out more.

    Thanks again and best wishes to you both Ellen & Sheryl xx

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