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Old Sun Jun 2, 2019, 11:26 PM
Stevie K Stevie K is offline
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Join Date: May 2019
Location: Phoenix, Arizona
Posts: 3
Thank you for the additional information, Marlene I actually have had some of my hormones checked. My thyroid was normal - TSH 1.63, FT4 1.0, FT3 3.0, antibodies negative. Testosterone was very low even for a woman - total serum <3 ng/dl (normal is 8-48 per the lab reference range, but what I have researched women should ideally be above 25 based on my age) - I have ALL the classical symptoms of low testosterone but of course some of these symptoms are also symptoms of AA and PNH. Other sex hormones, including DHEA, estrogen, progesterone, ect. all normal. I discussed this with my hematologist, but he dismissed it (as he usually does). I saw a women's hormone specialist (took 2+ months to get appointment with her), and she did not recommend testosterone replacement or any other treatment for that matter. She was very discouraging and basically said even if I did go on treatment I wouldn't feel any better. I self-started a low dose DHEA, but had to stop it because it made my headaches so much worse. I am actually still interested in trying testosterone replacement as I do personally believe it would help.

Val, THANK YOU for sharing your success story with LDN and additional recommendations, and of course for your encouraging words. I am so glad to hear that you have had such good results! I hope that continues for you This definitely makes me more motivated to pursue LDN. I know there are online providers who will prescribe it, so may have to go that route, unless I can find a good ND. Honestly, I don't know why my hematologist is so hesitant to prescribe it. I had done quite a bit of research on it before I had talked to him (and it seems to be relatively benign side effect wise), so it's not like it was an off-the-wall request.
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Stevie , age 31, dx AA (3/2016) and PNH (10/2017), on eculizumab (since 12/2017) with limited improvement in sx and CBC; various non-pharmacologic modalities and healthy lifestyle habits have aided better QoL
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