Seen some chats and research on LDN and it seems like the complete drug for me.

Hypo Hashi ; SLE lupus and breast cancer survivor twice. 

I take T3 only and stopped the tamoxifen, levo and hydrocroxy... not wanting to just throw a load of pills down my neck, with there own side effects. I supplement with vits and need to try much harder with diet.

i feel i have wasted hours with doctors, consultants and tests. today at endo i was crossed armed, mouth open and eyebrows raised, couldn't agree with one word she said, finding this a lot with everyone.

I am fatigued, i not only work full time but also employ staff to run busy country pub with lovely grub. personal stuff has/is been stressful, feel confident but alone. am not ok but no worse health wise. I want to want a life too. 

Do I need LDN too make me well enough to get better myself. I read a lot here and google but don't have the energy/strength or brain to take it all in and action it in at the hospital.

Does anyone have LDN prescribed to them through oncology or rhumatology. Endocrology useless. Now I feel my only way forward is to manage my own meds. I have sourced them, think i can afford them, probably private testing too.

Why shouldn't I try LDN? and self medicate my T3. others do don't they?

Thank you

4 Replies

  • Hi there, I couldn't get doctors to prescribe LDN so in the end I got it privately. I was really excited as it sounded like a wonder drug. I started low and increased the dose as I was told too. After 6 months I still did t feel any better at all. 

    LDN had side effects too. Strange dreams for a while is the main thing I remember. It might work for you. It unfortunately didn't for me. 

    I hope you get the help you need. Well done at working full time. I'm doing a degree and work mainly from home but I'm really struggling. In fact I should be there today but felt too unwell and exhausted after a sleepless night. 

    Good luck!  I'm sorry you've been through so much. I'm also really disappointed with the treatments. I'm on steroids and immune suppressants and the only thing they seem to help is joint pain. I do have auto immune hepatitis too though and it keeps flaring up! I think stress is one of the biggest problems. 

    Keep us posted on your journey! All the best 

  • Hi weg1,

    Is your consultant aware that you have stopped taking the hydroxychloroquine for your lupus? Were you experiencing side-effects from this treatment?

    Many consultants may be unlikely to prescribe LDN for lupus because it is not a licensed treatment and there is currently no clinical evidence of its efficacy. As jacqueline121 has said, some consultants may prescribe it privately, but like any treatment, people with lupus respond to it differently and it may not be effective for everybody. 

  • I take LDN after much research .I went to a private clinic for it .I called a compound pharmacy in my city and they told me who was prescribed it ..I live in Ontario Canada .I have only been on it 2 weeks at a low dose. .For 3 days I have felt better then I have in a very long time ..I'm very hopeful ..Facebook has a lot of forums you can join with many giving their experience. Good Luck .Marg 

  • yes fully aware, seems the consultants like to blame the the other illness for my symptoms, it has been left t me to work through it all as i have to function.

    sorry for short reply's very long day x

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