Undiagnosed and rare conditions
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Loved one has had very low ferritin level for months

jdb2jdb2 Member Posts: 1 Listener
I'm typing this on behalf of my mother. She has been feeling sick and weak for at least months and has gone to several doctors with no diagnosis. The problem is that the doctors don't communicate or share medical records, or, they are myopic and can't make diagnoses that fall outside their specialty.

To get to the point, my mom's ferritin level has dropped from 9 to 7 in a month ( It's supposed to be in the 16 to 288 range for healthy individuals ). My mom's rheumatologist was concerned and sent her to hematologist who *did nothing*. He instead recommended that she should have a colonoscopy, but none of her other blood work or tests indicates that she has any type of gastrointestinal bleeding and she doesn't have dark stools . Since my mom saw her rheumatologist, my mom's ferritin dropped 2 more points.

The sections of the blood work that are pertinent include the following :

Other blood results:

 IRON AND TOTAL IRON BINDING CAPACITY IRON, TOTAL Reference Range: 45-160 mcg/dL 67 - No Historical Data

IRON BINDING CAPACITY Reference Range: 250-450 mcg/dL (calc) 468 H

% SATURATION Reference Range: 16-45 % (calc) 14 L No Historical Data

MCH 25.3 L Reference Range: 27.0-33.0 pg
 MCHC 30.6 L Reference Range: 32.0-36.0 g/dL
 RDW 16.4 H Reference Range: 11.0-15.0 %

We live in Spring Texas in the United States and my mom is using the government health care plan, which is horrible ( at least it is now, but it's all she can afford ). She's seen dozens of doctors and none of them can seem to figure out what the problem is. We don't know quite what to do at this point.

Anyway, I hope this is the correct forum for my question -- it's the first one that shows up in a google search for undiagnosed conditions.

If anyone has any recommendations, we'd be very grateful.

Thank you,

jdb2

Replies

  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @jdb2 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.   Please note that Scope is a disability organisation and we are unable or qualified to advise you on anything medical.  However, I have found and American Health website you may find useful,

    https://www.nih.gov/

    I am sorry to hear of your mother's health issues.  Maybe you should go back to her doctor and ask for some further help with this.  I hope you can be more successful with finding out more information anyway and hope your mother feels better soon. If there is anything else we can help you with then please just let us know.  Thank you for joining our Community.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @jdb2 and welcome to the community.
    Unfortunately, as Ails said, as a pan-disability charity, we're not qualified to give expert medical advice here. Have you tried SwanUSA? While a children's charity, they specialise in undiagnosed conditions and might be able to give you some suggestions as to where you and your mother can get better support. There's also these resources from RUN that might be useful.
    Senior Community Partner
    Scope

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