Started w/iron deficient anemia

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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.....

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14 Replies

  • 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.

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  • 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.
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    • Posted

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

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  • 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 

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    • 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.
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    • 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.

       

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    • 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.

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    • 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 .

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    • 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!!

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    • 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!!

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    • Posted

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