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Additional Blood Work: Possible Solution

Discussion in 'The Undiagnosed' started by Rarecats, Mar 3, 2018.

  1. Rarecats

    Rarecats New Member

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    I had Stage III breast cancer 7.5 years ago and underwent chemotherapy, double mastectomy, radiation, and subsequent reconstruction surgeries. A year after chemo was over I asked my doctor why I was still so tired, easily sleeping 16 hours a day and struggling during the hours I was awake. My hair, which had begun to come back very nicely, suddenly began to break and what remained was very weak and thin. I did not have the chemo that does cause long term hair loss and I estimate that I have about 1/3 of the amount of hair I had prior to chemo.

    I've begged for answers for 6 years now - withevery doctor looking at me like I'm nuts. In these 6 years it was discovered that my thyroid is shot (probably from radiation), I have very low vitamin D, and very low ferritin. Every single one of these tests I had to argue, push, and argue again to have. After addressing these issues without any changes in hair amount or growth I remained desperate.

    This fall a new doctor, whom I pay out of pocket because insurance doesn't cover, decided to run a vitamin/nutritional panel which measures the average of vitamins and minerals in your system over a 4-6 month period. The results: low vitamin E, low B5, and the kicker, severe biotin deficiency (which is life threatening) all of which are necessary for hair growth! Within a week of beginning these supplements my energy level and clarity snapped back and I feel 30 years old again. I was so scared it wouldn't last and for those first few weeks I'd work until 1:30 in the morning because I was so afraid I wouldn't feel good the next day. I am hopeful this is the solution. I hope.

    Biotin deficiency, it turns out, is very rare. Doesn't seem like anyone's really testing for it so how rare is it exactly? I mean, I had to research and fight for this test for 6 years. Maybe this is what's going on with you.

    Did I mention my dermatologist told me "there's nothing you can do"? Nice. Awesome. Even though I had the lab results sent to her. Even though if you truly do have biotin deficiency then supplementing with biotin should turn the hair loss around? And as a dermatologist who sees hair loss patients all day long she should be interested in the CAUSE of mine or hey, even ordering this test for other patients she might actually be able to help rather than humble? Did she even give a sh%t? Thanks, doctor. I won't be baring my mutilated body for her perusal ever again.

    Meanwhile, my acupuncturist needles my scalp and gave me polygonum 14 to try. It can't hurt. What the hell, I'm all in. I've had 3 sessions. This is a weekly appointment.

    I've tried every hair extension method you can imagine from the keratin bonds to the tape-ins and finally to the best one yet, Revive by easihair pro. Pricey as hell. All of it. I don't care. I don't feel like I have enough hair to pull off a short haircut and furthermore, I don't want to.

    Doctors insist that "chemotherapy doesn't cause nutritional deficiencies" and I'd really like to know where this study was done and where I can obtain a copy of the literature because there's no way chemo does not cause nutritional deficiencies and they need to run tests for it because while I'm grateful to be alive, the past 6 years have been worse than the actual cancer treatments. Hair loss aside, I've slept through the past 6 years. I didn't fight for my life to sleep through the rest of it.

    My point? Never NEVER EVER give up pushing your physicians to run more tests. A Complete Blood Panel is anything BUT "complete". XO Sisters
     

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