LDN (Low Dose Naltrexone) for Graves’ and other Autoimmune Diseases

From:  http://tiredthyroid.com/graves.html

There is a prescription substance called low dose naltrexone, or LDN, which has helped some Graves’ patients significantly reduce their antibodies.   Positive first person testimonies can be found on Graves’ and LDN chat groups throughout the internet, and there are a few medical journal studies on LDN that showed positive results in autoimmune conditions like Crohn’s, multiple sclerosis, and fibromyalgia.  Low Dose Naltrexone and LDNScience are two websites with a great deal of information that one could share with their doctor.  

Lately, the positive effects of LDN have come up on several thyroid forums.  I cannot share any personal experiences with LDN since I myself have never tried it, but I have heard positive testimonies from several Graves’ patients who are using LDN as a treatment for Graves’ disease, and thought they should be shared.

Graves’ patient #1 feels much more stable since starting LDN treatment.  In the past, her tapazole (anti-thyroid drug) dose was frequently adjusted up or down in response to life stressors, which seemed to trigger her Graves’; this left her with fluctuating, erratic thyroid levels where she sometimes felt hyper, yet at other times hypo.  Later, a modified block and replace regimen of 5 mg. tapazole + 25 mcg levothyroxine left her with other hypo symptoms like high cholesterol, weight gain, rising glucose, and just feeling hypo, even though she had no TSH, and her FT4 and FT3 were mid-range.

After starting on a very small dose of LDN (1.12 mg, or ¼ of the typical 4.5 mg dose), her LDN dose was raised a month later to 2.25 mg., and feeling more hypo, her tapazole was slowly reduced until she now takes no tapazole and no levothyroxine either.  After only 6 months on LDN, she now has measurable TSH, although it’s still on the low side.  And while she still has other health issues she is working on, she feels the LDN treatment has stabilized her constantly fluctuating thyroid levels and has vastly improved her health.  She has more energy, her thoughts are clearer, she’s lost 4 lbs, is handling stress better, and does not feel hyper.

Graves’ patient #2 (who takes the full 4.5 mg LDN dose in addition to low dose block and replace) reports better and deeper sleep, more energy, and noticed that her seasonal allergies and arthritic pain disappeared.  She no longer needs Albuterol or Advair for her allergies.  Her antibodies have come down since starting LDN treatment.

Graves’ patient #3 suffered debilitating muscle pain 24/7 that disappeared only 3 weeks after starting 1.5 mg LDN.  She feels her immunity has improved since her entire family got sick this year and she didn’t, when she normally caught every bug going around.  Her digestive system has also improved to the point that she recently had a slice of cheese pizza with no reaction, where previous to LDN treatment, she would feel sick to her stomach and have bloating, cramps, constipation, and nausea.  Her skin is also much clearer today.  She feels her mental clarity has improved and hopes to see further improvement with a higher LDN dose.

Is LDN treatment the cure for all autoimmune diseases?  That is probably too much of a blanket statement, and some on the LDN internet forums have reported side effects.  Some may not be Graves’ patients, but current theories are that a genetic MTHFR mutation is responsible for some cases of intolerance, while low IGF-1 (insulin-like growth factor) is another cause.  In any case, LDN is a prescription drug that must be obtained from a compounding pharmacy, so one must work closely with a doctor while following this protocol.  I urge everyone who suffers from an autoimmune disease to do further research on LDN, to see if they might benefit from a trial dose.

My initial impression is that LDN treatment should be tried as a first option for someone with Graves’, given that all the other options are either difficult to manage, or can have serious, irreversible side effects.  Anti-thyroid drugs (ATDs) like tapazole, methimazole, or propylthiouracil can be difficult to dose, because many with Graves’ have fluctuating thyroid levels, requiring frequent dose adjustments.  But an increase in dose to offset a hyper episode may leave them hypo as soon as it settles down, requiring another adjustment.  High doses of ATDs are not recommended because they can cause liver damage, so there is a limit to how much one can take.  In difficult cases, LDN can be used in combination with the anti-thyroid drugs, and may even result in a lower dose of the ATD, which would be safer and less stressful to the body.  A thyroidectomy cannot be undone, nor can radioactive iodine (RAI), and RAI has caused permanent, debilitating, lifelong side effects like TED (thyroid eye disease) in some, so really should not be a first choice of treatment.

If you are using LDN to treat Graves’ disease, please share your story, positive or negative, by leaving a comment.

19 thoughts on “LDN (Low Dose Naltrexone) for Graves’ and other Autoimmune Diseases

    • I also have both Grave’s and Hashimoto’s… How are you doing on the LDN since August?? I need more info quick as I am scheduled for my thyroidectomy in March and I’m not sure I’m making the right decision.. Help!

  1. I have Graves and maybe Hashimoto’s too. But Graves is winning. I started on LDN 11 days ago, 3 mg. I have had no side effects. One vivid, bad dream, but that is normal for me. If anything, I’ve dreamed less.

    No difference in how I feel yet. My doctor is upping the dosage to 4.5 mg and I’ll start that in another week.

    Othere than thyroid issues, I am perfectly healthy. I eat clean, don’t drink, have little stress in my life and am 56 years young. I will keep you posted on my progress.

    • Paige, I’m curious to hear your response to the LDN as I’ve recently been diagnosed with Grave’s at 37 . Sure would be nice to have my life back & think clearly again since I have 3 small children

  2. I have been on LDN for about 2 months now. I started at 0.5 mg and moved up to using 2mg fairly quickly. I have had TED (thyroid eye disease) since having both graves and hashimotos. I am going to get blood tests soon. I feel great but my right eye muscles have stiffened up and now I have progressing double vision. But…I know it’s because I’m going into remission so I’m waiting for the TED to resolve itself best it can. In all other ways, I’m doing very well now.

    • Hi Anne, I have Graves’ disease, as well as thyroid eye disease. My eyes have cleared up the past couple months, and my holistic Dr just put me on LDN a couple days ago. Right before I started taking it my right eyelid swelled up huge. Does that mean I might be going into remission as well? Just curious if there’s a connection since you mentioned going into remission. I need a glimmer of hope. Thank you!

  3. I started with GAD at 15, developed Graves/Hyper with a Goiter at 17. Took propylthiouracil for a year. Then RAI, I have they eye issues and my vision that was 20/20 is now 250/350 with a stigmatism. At 20, I started taking anxiety meds, 22 diagnosed with FMS/CFS, Gastritis, 33 panic attacks started, at 24 Migraines, 27 Ulcers, 29 Stage 7 Adrenal Fatigue aka Addison’s level, 33 Scleroderma. I am gluten lite and have gone bother gluten and grain free and have not lost a single pound. I’m nearly 37 and I have never been pregnant and with all this going on was always afraid to put myself through the heart ache of loosing a child but then again I might be sterile because of the RAI but I also think that after I went off of birth control it probably left me open to develop PCOS since I had cysts under control with that. I have no insurance so I haven’t determined that as fact.

    I have a year supply of LDN on the way and I’m banking on it being my miracle drug. Just tapering off some of my supplements, having the energy to run every day and do my job as a massage therapist without reservation will be entirely life changing. That will help me loose weight in the long run.

    I am curious though how if it works for Crohn’s how it wouldn’t work for digestive issues incurred through the autoimmune response. Seems like it would correct that as well. I’m hoping for that as well. If Crohn’s is caused by gluten allergy and this allows them to eat normal food then I should be able to eat gluten now without any issues. At least, that is what I have surmised from my research.

  4. Sorry if this is question asks the obvious. Nowhere does it say anything about using LDN to treat those of us who no longer have a thyroid due to RAI. Thank you!

    • You can use LDN whether or not you have a thyroid gland. Graves’ antibodies can be high with no thyroid gland. Please read the Graves’ section.

  5. I was in remission for 10 years. Had the eye disease and subsequent corrective surgeries. Now the graves is back and I am not tolerating the medication. One gave me a rash and the other really messed up my blood levels. (Ferritin, white platelets, red blood cells) Docs are recommending RAI however I am worried about eye disease returning. LDN may be an answer? I kinda think my Kaiser doctor will not prescribe since it has never been mentioned and they felt that RAI was my only option. I need to decide very soon since I am not currently addressing the disease with anything. Any thoughts?

    • RAI is contraindicated if you have Thyroid Eye Disease. Thyroidectomy is another option. And if you haven’t tried LDN, I would certainly research it as another possible option. Good luck!

  6. I had RAI 3/2011 for Graves. I finally have a doctor who just told me TSI is 1702 (should be under 150) and TPO is 99 (should be under 60). I have been taking .025 mg synthroid daily for last 6 weeks (last doctor wanted to get TSH in normal range…even though I knew this wouldn’t work..thank you Barb). My new doctor wants to switch me directly to 30 mg of Armour (last labs were TSH-.257, FT4-1.1,FT3-2.5).I am worried about a complete switch over, ..but also what about my TSI, shouldn’t I address this? Could I try a mushroom supplement, but what kind?

    • If you had RAI and have no thyroid function, you have to replicate what a normal thyroid gland produces. That would be something close to 100 mcg T4 and 10 mcg T3. 25 mcg of Synthroid or 1/2 grain of Armour (19 mcg T4 + 4.5 mcg T3) would leave you grossly undermedicated. Also, having Graves’, you should never be dosed by TSH, or you will remain undermedicated.

      • Ok, I will bring that up to my doctor, thank you. Can the number of graves antibodies affect my dose? Should I try to get that down? Or will it happen naturally when I am taking a dose where I feel well. Thank you again.
        Terry

        • Everyone’s biochemistry is different so there’s no way to know what your optimal dose is or how your antibodies will be affected. Just don’t base your dose on TSH or you’ll never get to an optimal dose.

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