Home Forums General Discussion My adventure with LDN

This topic contains 12 replies, has 6 voices, and was last updated by  Calida 1 year, 9 months ago.

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #456318
    Linda L
    Participant

    I take Oroxine Thyroid tablets every morning. More than a month ago I decided to try LDN and I was taking 1mg only at 10pm. I knew that if you are on thyroid medications you must start with not more than 1.5mg, slowly increase it and reach 3mg maximum.It was written that LDN may promptly decrease autoimmune disorder which then may require a rapid reduction in the dose of thyroid hormone in order to avoid hyperthyroidism. One evening I took 2mg but pain increased. After one month suddenly i realized that I didn’t really sleep for the last three days. It was so sudden and scary. I was so tired but at the same time like being on a high with my eyes wide open. I realized that I overdosed LDN + Oroxine. That evening I didn’t take LDN and didn’t take Oroxine the following morning and the next three days. Immediately I felt better and started to have a good sleep.
    After three days I resumed with Oroxine and didn’t take LDN after that. I should say that I had a feeling that LDN was helping with my pain but if you take thyroid medications it is very difficult to control what happens. You cannot have blood tests every three days in order to check your thyroid results so it is very difficult. It is probably easier for someone who stays in a hospital. But I remember nights when I was waking up and thinking “what a miracle, I don’t feel any pain”….
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456319
    Misty
    Participant

    Hello Linda L,
    Sorry to hear you had problems with LDN. I do not have thyroid issues but have been taking LDN and following AIP diet for several months to control my RA.So far this has worked and I have not yet started with Minocycline (hoping I won’t need to). During this time I have been following others using LDN and it seemes like a majority of the users have thyroid issues.I have understood that you need to start very low if you are on thyroid meds and that means 0.5 or often less and increasing the dose should be very slow.The need for meds then decreases.I hope you have a doctor who has LDN knowledge, that really makes a difference.I hope you don’t give up on LDN, it really has worked for so many:)

    #456320
    PhilC
    Participant

    Hi Linda,

    One evening I took 2mg but pain increased.

    That’s a strong clue that you took too much.

    I should say that I had a feeling that LDN was helping with my pain but if you take thyroid medications it is very difficult to control what happens. You cannot have blood tests every three days in order to check your thyroid results so it is very difficult.

    Perhaps you could make an appointment to see your doctor, and then start back on LDN in advance of your appointment.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #456321
    Calida
    Participant

    Hi Linda,

    My husband had severe Graves symptoms and his labs also showed a high RF and CCP. Our primary was reluctant to prescribe LDN for Graves but my husband was beginning to show signs of RA so he prescribed 3.5mg, the same dose I was taking with great success. The next day he was bugging, all anxious and hyper, and the Graves signs were returning so he reduced the dose to half, 1.75, and had great results. It’s been almost 3 years and there’s no signs of Graves or RA, LDN alone seems to be keeping things in check.

    There are no hard and fast rules that one must increase the LDN dose, especially if the results are good, and that’s even more true for thyroid patients. Did you maintain the 2 mg dose for the full month before you lost those 3 nights or was that just a one night test?

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456322
    Linda L
    Participant

    Thank you Misty, Phil and Calida. 2mg was just one night test. Maybe I should have started with 0.5 dose as I am very sensitive to any drugs /like my experience with Mino/ I had my first visit to AP doctor last week. She requested many tests and I am doing them now. I didn’t discuss LDN with her but i will next time. I don’t give up on LDN.
    Halo to everyone. Have a nice weekend!
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456335
    Nikkoal
    Participant

    Hi Linda, I have hypothyroid/hashimotos. I started Minocycline 10 weeks ago, and am cautiously optimistic as I have had a recent increase in energy and my appetite is coming back around. I started LDN July 1, and I started at 0.5 mg for a week, and increased by 0.5mg each week. I am currently at 2mg (3 weeks now),and am scheduled to have my thyroid levels checked this week. I think I will stick to 2mg because I feel good at this dose, and my thought is, if I stay on 2mg for the next 3 months and have my thyroid levels checked again, at that point I should know where my synthroid dosage should be. When I started LDN, and each time I increased, I felt anxious and jittery for a few days, but it leveled out after a few days each time. Some people do better at lower doses. Maybe stay low where you feel good for a few months, then check your thyroid levels.

    #456343
    Linda L
    Participant

    Thank you very much Nikkoal. How much Minocycline do you take? When you ckeck your thyroid levels please let me know the results.
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456344
    Nikkoal
    Participant

    I take Mino 100mg twice daily MWF. My doc also started me on Biaxin 500mg twice daily TThS (instead of clidy infusions). This will last about 2-3 months, then I will be back to just Minocin. I will let you know. My thought is that I can adjust my thyroid medication to compliment the LDN when I land at my optimal dose.

    #456346
    Linda L
    Participant

    OK. LDN intrigues me.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456556
    Linda L
    Participant

    Nikkoal,
    Have you checked your thyroid levels?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456560
    Spiffy
    Participant

    Calida, has your husband’s lab markers gotten better?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #456566
    Nikkoal
    Participant

    Calida, I was wondering the same thing, if the LDN has had the effect of lowering antibody levels in your husbands case.

    #456580
    Calida
    Participant

    HI Spiffy and Nikkoal,

    My husband started LDN during the height of his Graves symptoms in January 2014 and his thyroid labs have been in normal range since. We haven’t checked his RF and CCP lately but he’s due for those and I’ll report back when we get the results.

    He had a nodule – not sure if it was considered “hot” – and had a sonogram a few months ago. The doctor left a message that everything was fine. Again, he’s overdue for a visit with the endocrinologist so we’ll ask what “fine” means at the next visit.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

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