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Started w/iron deficient anemia

Posted , 3 users are following.

Shad6452
Shad6452

Since '06 I received blood transfusions for the low hemoglobin.i could breath better& had energy.cause was not diagnosed ! One time I developed pneumonia & was diagnosed wth cops. I was given puffers...I'm so SOB & weak.....

0 likes, 14 replies

14 Replies

  • Shad6452
    Shad6452

    Posted

    2) the 4different puffers don't help...my hemoglobin is slightly low so is this copd or low hemoglobin? I have tingling in my hands & feet...close to passing out..eating crushed ice... weight gain ! I need help.

  • MaryLip
    MaryLip Shad6452

    Posted

    @shad6452  I am just the opposite, I make too much iron because I have a rare blood condition (inherited) called porphyria.  I have to have a venesection every so often.  (a pint of blood drawn) it is the only way my iron levels can be controlled.
    • Shad6452
      Shad6452 MaryLip

      Posted

      Its weird - my sister has the same condition as you...... She can't donate blood to me!!

  • Vee2
    Vee2 Shad6452

    Posted

    anemia and copd are 2 entirely different illness, you best bet is to chat with you own doctors about your situation.

    If you are using your puffers and you are finding they are not helping, again discuss with your own doctor.

    Discuss all your symptoms with your doctors, its important they know.

    you may also want to check out the anemia and haematological disorder forums just search anemia (top right) patient uk 

    • MaryLip
      MaryLip Vee2

      Posted

      @Vee2  believe you me, I have chatted and chatted to my doctors about my porphyria, it is a vile condition.    The trouble is, it is so rare that doctors do not know much about it.
    • Vee2
      Vee2 MaryLip

      Posted

      I don't expect your GP would know, and likely many here do not know either, but I believe it may not be related to COPD so even less likely people in the COPD forum would know.  

      If you think its alpha1 antitrypsin then a simple blood test will reveal if you have that or not.

      Either way I believe both alpha1 and porphyria warrants referral to a specialising consultant who will know about the health issue concerned.

      porphyria nhs google search brings up the British dedicated organisations /  sites. 

      patient UK has its own pages on porphyria.

      other search no doubt will reveal the connection between porphyria and shortness of breath.

       

    • MaryLip
      MaryLip Vee2

      Posted

      @Vee2

      I do not believe that COPD is caused by porphyria,, I was just pointing out how many complications there are in any illness.

    • MaryLip
      MaryLip Vee2

      Posted

      @Vee2  I think we have our wires crossed here, Vee, I have been all over the country for tests re:- porphyria.  The knowledge is strictly limited, it is so rare that there isn't any funds for research.  Thank you .

    • Shad6452
      Shad6452 Vee2

      Posted

      Thank you so much. I agree with you 100% but I'm being shifted around ! I'm so tired & want thm to leave me alone now ! There is a 'calcified' aneurysm in chrodid artery ( spell?). I'm ready to give up.... My doc hasn't got the time!!

    • Shad6452
      Shad6452 MaryLip

      Posted

      Hi.... Doc's are adamant that I have copd from smoking but I don't smoke anymore , I'm very isolated & depressed..... I stopped going outside now!!

    • Shad6452
      Shad6452 MaryLip

      Posted

      Hi again.... How can they justify blood transfusions since 06..... No diagnosis... Iron deficiency...... How can I make someone here me!!
    • Vee2
      Vee2 MaryLip

      Posted

      COPD discussion forum you understand this is where you are wanting to talk about something unrelated.  As mentioned above, there are other avenues you should pursue, rather than a COPD discussion and support forum.
    • Vee2
      Vee2 Shad6452

      Posted

      If you are in the UK Shad6452 I would suggest you contact the British Lung Foundation Helpline who may be able to advise you further regarding your diagnosis of COPD.

      If you do not reside in the UK I would suggest you contact the lung foundation or association in your country of residence.  

      Doing so will in addition to further advice, help and support, put you in touch with any local support groups in your area.

       

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