Low Dose Naltrexone (LDN)

[EllieMayNot]

Hello!

Kind of new here but it was recommended that I share my experience with LDN to help treat my Hashimoto's. I was diagnosed just over a year ago and started on LDN shortly after diagnosis to help with several autoimmune issues and CFS/FM. I actually asked several of my former practitioners for LDN and received a flat out "NO" and even "We don't do that!" I finally found a functional practitioner who recognizes the benefit of the therapy and she was more than happy to prescribe it for me. When I first asked her about trying it she actually said, "You should be on it!" What a difference from the others!

I had read a lot of good reports on how people with various autoimmune issues and fibromyalgia did benefit from the LDN and I have to say that I have experienced good results, myself.

My TPO antibodies are down to 26 (they were at 200 just a year ago) and the pain from the fibromyalgia is reduced. My practitioner said that the quick reduction in TPO antibodies is due to the LDN and I am inclined to agree.

If anyone is looking for more information, here is a website that I have found to be very helpful and informative:

lowdosenaltrexone.org/

Hoping that this information might help others in getting their Hashi's under better control.

[kymkat]

I had a similar experience with LDN when I used it some years back, unfortunately my health has deteriorated since then and I am taking too many opoids for it to work,but I would highly recommend trying this for anyone suffering with Fms/Me/ Cfs.

[EllieMayNot in reply to kymkat]

Sorry to hear of your declining health. Hope you find relief.

[kymkat in reply to EllieMayNot]

How kind! I have given up some foods which is increasing my energy and I research all the time for new ideas, not giving up.;

[Julesb02]

Hi,

Thank you for sharing this. I have been looking into LDN as I'm sick of going to GPs who ineffectively treat hashimotos, hypothyroid/fibromyalgia/digestion/allergy issues. I'll try using this with the GP!

Thank you 🤞🤞

[MaisieGray in reply to Julesb02]

Naltrexone is an anti-opiate at full dose. Even if your GP is aware of the use of naltrexone at low doses, the likelihood of you being prescribed it in the UK on the NHS is low, as it is unlicensed for the purpose described by the OP, who I believe is in the US. Therefore many of those who use LDN in the UK have to be prescribed it privately. LDN is a compounded drug and in the UK there are very few 'retail' compounding pharmacies, again unlike the US, and although they aren't the sole compounders, much of LDN is dispensed by one particular Glasgow pharmacy whose owner is an advisor to the LDN Research Trust. You do however, need a prescription.

[LindaC in reply to MaisieGray]

Yes, I tried a couple of years back - took in the info leaflets, he point blank refused and went so far as to tell a consultant - I was seeking a referral to - that I'd asked for this and he'd refused... naughty girl, eh?

[Naomi8]

I have been taking LDN since 2015,for Hashimoto's and in particular,the symptom of fatigue.I worked up very very slowly & am now at 4.0.

Did you do the same?Are you now on the full dose of 4.5?

I am also GF & my autumn blood tests showed my antibodies are low.(can't give results as am away from home at present)

I take 2grains NDT & 6.25 mcgs T3 at 5.30am daily.

[EllieMayNot in reply to Naomi8]

Glad to hear it is helping! Yes, I worked up slowly to 4.5mg. Like you, I have been GF for a while. Have NDT on order, due to arrive on Monday. My T3 is on the low end of normal so most GPs won't even think to treat it. Hoping that it will provide even greater benefit. Never even heard of NDT until I joined this forum, shame it is not freely available and that GPs are not educated on the matter.

[cazzaleo]

Thanks for sharing this! I have Hashi’s and CFS/ME, and have been considering taking LDN for a while. Fatigue is my main problem - have you found any relief from fatigue with LDN?

[EllieMayNot in reply to cazzaleo]

I have only recently started to feel some relief from the fatigue. My NDT is supposed to arrive on Monday so I am hoping that helps, too. I have gone gluten free and that seems to help. Also learning not to push too hard (although life sometimes gets in the way of that plan). Just started reading Dr. Myhill's book, "Diagnosis and Treatment of Chrnonic Fatigue Syndrome and Myalgic Encephalitis". Hoping to gain more insight but I have a hard time concentrating so I end up rereading chapters and taking notes.

[cazzaleo in reply to EllieMayNot]

So great you are getting some relief! Hope the NDT helps further. I’ve been gf for a few years since just before I started feeling unwell, stomach issues/intolerances were the first thing to start happening to me so I haven’t had gluten or dairy for a while as a result. I’ve been doing AIP for the last 4 months and in that time my antibodies have dropped nicely - TPO from 90 to 47 and TGb from 701 to 446. Hopefully they’ll continue in that direction!

Learning not to push too hard is a tough one! I’ve been doing much better generally for the last couple of months but have just pushed things too hard and have been feeling much worse this week as a result. Fatigue and heaviness is much worse and the feeling faint, having daily headaches and brain fog etc are back 😕 It’s easy to get carried away when you feel you’re improving, isn’t it?!

I haven’t got any of her books but frequently read Dr Myhills web pages and I’m part of a FB group.

Hope things carry on on an upward trajectory for you!🤞

[Shadow7]

I have recently started LDN for Hashimoto’s. I’m only 2 weeks in so we’ll see how I go. I’m feeling very hopeful though so it’s great to hear other people’s experiences.

[Britomartis29]

M experience with LDN was similar and has been very, very positive. Replying also to cazzaleo, yes, my fatigue reduced sharply within a week or two. I am at 4.5, taken before bedtime. I feel like my old self again! My hair and nails are restored, too, though that took a while longer than the immediate pain-reduction effects. It went roughly like this: pain reduction within a few days, better mobility within a week and kept increasing, energy better within two weeks and I'd say fully back in a month or so, dry eyes improved inside two weeks, brain fog in a month, skin better in a few weeks. But the frazzled, brittle hair and nails, however, took longer for me, a good six months. Keep in mind this was all while reducing levo(T4) to nothing (keeping T3 but reducing it too) gradually with a doctor's consultations and testing. I am in USA but when I lived in UK (Scotland) I did hear of two people taking LDN (though I am sure one of them was seeing a private doctor; not sure about the other). I would fly across an ocean to get this life-changing drug, no question.

But it does not work for everyone, my nurse practictioner has said---she also said that it takes some people a while for it to kick in: some start at 2.5, go up to 4.5 or even up as high as 7; and that not everyone gets all symptoms relieved. It is a fractional dose of what the anti-opioid doses are, in my case less than 1/10; it works differently at the tiny dose. What she said about the variable outcomes is anecdotal; no idea what the statistics are. Good luck shadow7, EllieMayNot, and all others!

[Jalisi]

Thank you for sharing, what a wonderful post! I'm currently on 3.5 ml initiation dose. My symptoms are improving, I sleep really well and have been more resilient to stress. Actually, my husband can't believe how chilled out I am. I used to be - in his words - evil.

[jjf255]

My husband tried LDN for about a year in an effort to try and lower his antibodies. They went down but only sightly. We are in the U S and this drug was not covered by our insurance. It had to be compounded and was on the expensive side. My husband and his Dr. decided he should take some time off of it to see if his antibodies went up. He can always start taking it again if he chooses to. Before my husband started it ...his Dr. said it works very well for about 30%...and slightly for another 20% and does nothing for the rest. It doesn't hurt for people to try. So glad to hear it worked for you EllieMayNot!

[Fox78]

I take it too it’s definitely been amazing for me I don’t feel 100% but so much better than I did if you look back on my previous posts you will see I felt shocking!!

Happy to give contacts and advice if anyone wants to pm me x