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22 year old female with osteoporosis, don't have a lot of support

Posted , 12 users are following.

maria475
maria475

Hello, I'm new here and wanted to get some advice about my situation. Earlier this year I found out I have osteoporosis and low bone density. I think the worst results are from a part of my spine (-2.6) and femoral neck (-2.4). However, my hip is -0.6 and other results are in the osteopenia range.

I know it is very abnormal for someone my age to have this condition. I have been underweight for all of my teenage years and developed mental health problems and disordered eating habits when I was 15. This probably created the problem, I think I have been suffering from malnutrition for a very long time even before mental illness. I am lactose intolerant and I don't think I get calcium from my diet at all.

From a blood test, I now know I have high levels of parathyroid hormone and some proteins are at low levels. However, my doctor and the specialist I went to see failed to mention this, in fact my GP told me everything was normal from blood test results. I investigated this myself and have concluded that I'm not getting enough calcium from food and my body is literally taking it from my bones so blood calcium levels are in the normal range. Also, I've had chronically low levels of vitamin d (39.8 nmol/l) for at least a year. I'm currently underweight again and don't eat nearly enough food which is adding to the stress.

I want to stop being passive about this now and educate myself so I can make the right choices. I've been made to feel like it really isn't a big deal because I'm young and don't need medication. I've never had a fracture probably because I have been living an extremely sedentary lifestyle...which has really ruined my social life and mental health actually. I can feel the weakness in my bones everyday from dull aches and pains. I'm scared about the future.

The specialist I went to see gave me a sheet of paper with information about dietary calcium and wants my GP to prescribe me calcium supplements (500mg calcium with 500mg vit d). Will this be enough? I'm sceptical, it's like I've been left in the dark. I've relapsed back into eating disorder behaviour and feel really hopeless about my health. I'll have another dexa scan in 2-3 years and I think doctors want to see an improvement but I feel like things are just going to get worse from here.

Thank you for reading, I'm sorry for being so negative.

1 like, 26 replies

26 Replies

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  • ruby06073
    ruby06073 maria475

    Posted

    Sorry Maria, calcium tablets from your GP will usually say 'calcichew D3' not D2. xx

  • jill0890
    jill0890 maria475

    Posted

    You mentioned your parathyroid hormone numbers ... I encourage you to go to parathyroid com !!! This is something I am researching for myself even now. Just had new testing done of PTH and Blood Calcium.
  • Prohow
    Prohow maria475

    Posted

    Maria,   Get more than one opinion about your medical problem .

                Get involved in Church- Do some exercise ? Do yoga followed by

                 Meditation . Enroll in  Adult education class. Smile at everybody

                   Prohow - Howie

  • autumn38272
    autumn38272 maria475

    Posted

    Hey,

    I'm 19, and I have both an eating disorder and basically went through surgical menopause so I have almost no hormones, and I'm pretty sure I'm developing osteoporosis / will have it pretty soon

    I'm going to a doctor soon about it, my appointment is in a few months, but I just wanted to say I'm here if you ever want support or anything from someone close to your age?

    <3

  • bernadette42284
    bernadette42284 maria475

    Posted

    Hi Maria it sounds like you may have a parathyroid adenoma, they are a benign tumour which causes your bones to shed calcium into your blood from your bones.  I had mine removed in 2011 and now have osteoporosis.  If you have one it needs removing.
    • maria475
      maria475 bernadette42284

      Posted

      Hi, I think I'll get another blood test done in a few months to see if pth is still high. I now take calcium supplements and I'm eating better so this might have changed some things. However, if nothings changed and parathyroid hormone is still high then I'll talk to my doctor about this. What kind of scan checks for tumours in parathyroid?

    • bernadette42284
      bernadette42284 maria475

      Posted

      If you do happen to have a parathyroid tumour then taking calcium is dangerous as your blood levels may already be very high.  They can tell if you have one from blood tests (very high blood levels of calcium) and by doing a urine test to find out the amount of potassium in your urine. 
  • Prohow
    Prohow maria475

    Posted

    I am not a doctor so this is an opinion . Get a new GP based on his incorrect analysis

    i broke my back and had Cancer at same tiMe so I asked for anti depression drug. It took 6 weeks but I feel mentally better . You are real young and can do anything so ride the waves : don't get too down when things go bad; don't get too high when things are good , young lady " Ride the waves"

  • kristin20459
    kristin20459 maria475

    Posted

    Sounds like you need new doctors. In my experience, if doctors hear one suspicious thing about you--in your case, that you've suffered from eating disorders--they're willing to write it off as that and not look into further complications.

    Consider seeing an endocrinologist about your osteoporosis. They'll be able to tell you exactly what you need.

    My endocrinologist told me that I need at least 1,500mg of calcium a day (in 500mg increments, as your body can't absorb much more than 500mg at a time). This can be with food (dairy, leafy greens, almonds, etc.) or from supplements. If you have a Vitamin D deficiency like I do, you need to be taking 50,000 IU a week. Your GP can prescribe you that pill. You should also be getting regular blood/urine tests to be sure your levels are improving.

    I'm 27, so I understand how crazy it feels to be young with osteoporosis. But you can definitely get better; just be sure to seek help from the right people, especially a specialist for your osteoporosis and a mental health professional for your eating disorders.

    Best of luck.

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