Low Dose Naltrexone (LDN): Has anyone tried LDN... - Thyroid UK

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Low Dose Naltrexone (LDN)

Tabi-Lion5 profile image
44 Replies

Has anyone tried LDN?

I have Hypothyroidism (Hashimotos), Fibromyalgia,

Brain Fog, occasional insomnia.

I take Levothyroxine (100mg) for Thyroid but don't take

any medication for Fibromyalgia. I don't intend to substitute

Levothyroxine but would like to know if LDN has helped anyone?

Thank you!

44 Replies
Loobs39 profile image
Loobs39

Hi - I take LDN for Hashimotos (I don't suffer from fibromyalgia but also have RA and PA). The LDN helps but bizarrely, I can't say exactly what it helps, I just feel better on it than not. I do find it helps my mood, I don't feel so low when taking it. I also think it helps with pain relief although I also make golden paste (turmeric, fresh ground pepper and olive or coconut oil) which I find makes a huge difference to my RA pain so, although I am happy on LDN, I can't really be specific. If you do take it, start gradually as it does give you very vivid dreams to start with. Good luck.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Loobs39

Loobs39, thank you so much for your reply, it's great to hear that LDN helps with mood. I do feel low most days and would love to feel better in that sense. Glad you have had some relief for pain too. Yes, I would start slowly. Is this available on NHS? If not, then where would I get this from? I am in UK. Thank you.

Sharoosz profile image
Sharoosz in reply to Tabi-Lion5

I remember this topic and looked on some other posts: ldnresearchtrust.org (they apparently help people with information and also in obtaining LDN). Also mentioned was Dickson's Chemists in Glasgow. If I remember, you pay a 25 pound consulting fee and then you get a prescription and they ship it to you. Hope this helps. dicksonchemist.co.uk/new/

Regenallotment profile image
Regenallotment in reply to Loobs39

I like the sound of your paste Loobs39 do you eat it or rub it on?

Loobs39 profile image
Loobs39 in reply to Regenallotment

You eat it! It is pretty disgusting but you can put it in coffee which makes it bearable or if you prefer, orange juice, which really hides the taste. Look at the Facebook group 'Turmeric Support Group' for the recipe and general information.

Glosgran profile image
Glosgran in reply to Loobs39

What are the proportions for the Golden Paste, please?

Loobs39 profile image
Loobs39 in reply to Glosgran

It's 60g turmeric powder, 250mls water, 70mls coconut oil, 1.5 teaspoons freshly ground black pepper BUT this is not something you can just take without checking if it's OK with other drugs you are taking or if you have certain issues!!! Please look at the Facebook group 'Turmeric Support Group' as they have a list of drugs you should not take golden paste with and they can also tell you if it will assist with whatever issues you have.

Fox123 profile image
Fox123

I started LDN about 2 months ago. I am also self prescribing NDT ( since 2017) yet I still struggled to lose weight but since starting the LDN, diets now actually work! I also find that it seems to promote a “feel good factor “ The only downside, if you can call it one, are vivid dreams- not nightmares, just a bit more weird than normal but I can live with that, in fact it can be quite amusing when I relate some of them! 😆 I just wish I’d started it ages ago. I’ve researched it and there are no long term side effects either so you can stay on it for life if wanted. Good luck!

Josephineinamachine profile image
Josephineinamachine in reply to Fox123

hallo I tried it a few months ago but found I couldn’t sleep on it so I gave up. I’m going to try it again but take it in the mornings. In the meantime I introduced HRT so I’m giving that time to settle before going back on LDN again. I’m actually hoping it will help with my rosacea!

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Josephineinamachine

Josephineinamachine, thank you for reply. I read about sleep issues with LDN but as you said, the answer seems to be to take it in the mornings. Hope HRT settles soon so you can go back on LDN. From what I've seen here, it looks like LDN is the answer to a vast range of health issues.

Sparklingsunshine profile image
Sparklingsunshine in reply to Fox123

Hi

I have fibro and am very interested in LDN, are you all self sourcing or are you getting it prescribed? Thanks.

Fox123 profile image
Fox123 in reply to Sparklingsunshine

I source my LDN from the same place I get my NDT, in the USA , I will pm you the details. Doctors won’t prescribe LDN because it’s only been medically trialled as full dose Naltrexone which is used for drug addict rehabilitation and alcoholism, apparently it was a pharmacist who discovered the benefits of LDN but as yet there have been no trials done on its benefits so it’s not officially recognised.

Sparklingsunshine profile image
Sparklingsunshine in reply to Fox123

Hi

During my research on LDN I saw there's a big clinical study in Sweden examining the benefits for several chronic conditions. Its expected to report next year I believe. So maybe if its positive that will offer another treatment option. Fingers crossed.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Sparklingsunshine

Sparklingsunshine, thank you, so glad there's a clinical study being done on LDN in Sweden. That is such good news! It would be wonderful for so many people if this would become another option for treatment! Living in hope!!!!

iamazing profile image
iamazing in reply to Fox123

Fox123, could you please PM me regarding self prescribing NDT? And, if you are able to do the same with the LDN that info would also be so appreciated. Thank You.

topaz1 profile image
topaz1 in reply to Fox123

Hi Fox123, are you self-prescribing LDN? Could you please send me the details? Many thanks

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Fox123

Fox123, thank you so much! What a huge bonus it would be to lose weight! I've struggled so much. I was on Keto (which did work) but I'm putting it on again now. I think I'm comfort eating right now to make up for the way I feel most days, which is tired, in pain, fed up low mood and constant fatigue. If I felt better in myself I'm sure I would return to Keto. I wouldn't mind the vivid dreams in that case! Glad to hear LDN is helping!

Jeanne profile image
Jeanne in reply to Fox123

Is it easy to buy NDT in the UK?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Jeanne

Jeanne

NDT is prescription only in the UK.

wellness1 profile image
wellness1

I'm curious about it for pain relief, so will follow comments. There are also 'Related Posts' worth scrolling through, but always good to get current responses. :)

Tabi-Lion5 profile image
Tabi-Lion5 in reply to wellness1

wellness1, thank you for reply! Yes, I'm going to keep following any 'Related Posts' and updates on LDN. I hope you and I find some relief soon!

wellness1 profile image
wellness1 in reply to Tabi-Lion5

Thanks, you too. :)

Swissgirl profile image
Swissgirl

Hi Tabi- Lion. I have been on LDN for ca 1.5 years ( from compounding pharmacy in Switzerland, so sadly can’t help with sourcing). I have Hashimotos, CFS, Fibro and recently been diagnosed with MCAS, and am on Armour NDT.

My naturopath prescribed LDN on my request, as I had done a lot of reading on it, for pain ( muscles and joints) and it has certainly helped with the severe arthritis pain I have in my big toe joints, to the point I couldn’t sleep some nights. I started very low ( 0.5mg) at night and have built up to 1mg. Whenever I’ve tried to raise dose (e.g, 1.5mg) it seemed to overstimulate my system and I would have insomnia, and feel over medicated. I haven’t tried taking in the morning yet. I also use bioidentical hormone creams which may effect the outcome. I didn’t suffer from any side effects when I started, no vivid dreams, possibly a little insomnia until my body adjusted. I wouldn’t live without the LDN for pain management but wish I could increase more. Maybe I’ll try morning dose, or even split dose - hadn’t thought of that option until now. From my research, apparently the optimum daily dose to aim for is 3.5 - 4.5mg for max benefit. There is a good book called ‘ The LDN book’ , Chelsea Green Publishing, edited by Linda Elsegood, that I can recommend. Has whole chapters on CFS & Fibro, Thyroid, RLS, Depression, etc. All the best and take care🌸

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Swissgirl

Swissgirl, thank you so much for your very helpful reply! I've never seen a Naturopath and wouldn't know how to find one. Perhaps I should google to find one in UK? So sorry you've had such pain in your big toe, sounds awful and would keep me awake I'm sure! As for Hashi's, Fibro and CFS it seems we both suffer from same issues. From what I've read when researching yesterday, it seems that people are finding their 'sweet spot' at different doses and not ''one size fits all'' (so to speak) and some have gone up and down in dosage until they find the dose that suits them as individuals. Although, having said that, it makes sense to go up to max dose I would have thought, as you say. Thanks for recommending 'The LDN Book'. I'm sure that will help enormously as of right now, I only know bits and pieces from other people's comments. Do you know where I can purchase it? Amazon or an LDN site perhaps? Sounds good. All the best to you too.

acoldiron profile image
acoldiron

I take it for lupus and I do also take Plaquenil and I take Liothyronine for hypothyroid/Hashimoto’s (endos can’t seem to decide). I’ve taken it for about four years at the 4.5 dose and it is a miracle for me. It reduced my joint pain and the severity of my flares. It also seems to have steadied out the thyroid in ways I can’t prove but seem overall better: steady and pretty good weight, mood improvement, a lot less brain fog. It took three weeks or so for the improvements to really kick in. I was warned by the doctor about nightmares but that didn’t happen for me. One problem: one compounding pharmacy provides it and it works great. I went to another one closer to my town once, and what they gave me did not work at all! It was horrible. My lupus symptoms, thyroid brain fog, and moodiness returned with a vengeance, seemingly much worse than before (Dr said probably no worse but I was used to being free of it so it felt worse). Different methods of making it, according to the pharmacist. Very much worth the trip. Good luck!

acoldiron profile image
acoldiron in reply to acoldiron

ps: I am in USA since 2018.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to acoldiron

acoldiron, Thank you for reply. So happy that LDN improved your Thyroid issues with mood improvement and less brain fog. That would be such a miracle after all these years! It's very helpful to know there could be a difference in the way compounding pharmacies provides LDN. If it didn't work, then at least I would try another pharmacy, so I'll keep that in mind when I'm ready to access LDN. So, thank you for letting me know about that issue. I've heard about 'nightmares' but the way I see it is, living with all these health issues has had such a detrimental effect on my life, as a whole, that living day to day has become a nightmare in of itself!!!! Seriously though, I am so glad you have found some relief and the differences you have explained here has been proof of it working for you when you have the correct one made up. Best regards!

Bertwills profile image
Bertwills

Hello, I’ve been taking LDN for a few months now. I think it’s helped. I’m hypo and have had a diagnosis of fibromyalgia. I also unfortunately have severe Multiple Chemical Sensitivity which has caused me huge difficulties. I decided to try it & had stomach problems, diarrhoea, with taking the liquid. I now use the sublingual drops which I’ve tolerated much better especially if I drink lots of hazelnut milk too.

I have mine prescribed by clinic158.com which is associated with a pharmacy in Glasgow.

You can self refer and book a phone consultation. They’re pretty organised although I nearly ran out when I changed from liquid formulation to drops. Their system is that you leave your card number with them so that they can despatch 3 month's prescription consecutively before you need another consultation. After 3 months you should hopefully have reached the full dose of 4.5 mcg. It’s slow & steady increasing the dose to avoid side effects.

They like you to have recent blood test results to send them & you need to repeat a test after 3 months as often your thyroid hormone dose can be reduced. Good news if like me you take T3.

I’ve found that my fibromyalgia aching has much reduced & I’m more active. My step count has increased. It hasn’t helped my sleep much yet but some people find it takes months to do that. No nightmares or dreams for me!

Hope this helps. Come back to me if you need more info. I’d research online well in case there are questions you want answered during your phone consultation.

Sparklingsunshine profile image
Sparklingsunshine in reply to Bertwills

Hi

Is clinic 158 a thyroid clinic. I'm interested in LDN for fibro. I'm not so interested for thyroid symptoms.

Bertwills profile image
Bertwills in reply to Sparklingsunshine

As far as I know fibromyalgia would be treated by them. It’s not a thyroid clinic but an LDN clinic. Why not contact them through their website?

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Bertwills

Bertwills, thank you so much. Must be so difficult with having chemical sensitivities. I am lactose intolerant, so have Levothyroxine that doesn't have lactose in it. Glad to read that your Fibro aching has reduced and to be more active would be wonderful. As the saying goes "My mind wants to do so much but my body won't let me!!!!" ... Sadly, I'm on T4 only (which doesn't help). Hoping to get T3 sorted out soon, which will be when I get my Pension, (which won't be too long now ... been waiting!). I've seen how much a consultation fee is and monthly payments for a clinic in London (as I'm in London) but if the one in Glasgow is cheaper, then I'll go with that one! I'm not quite ready to do all this until after Christmas. First few weeks in January will be fine. Thank you for offer of help Re: phone consultation. It all sounds good to me! Best regards.

Bertwills profile image
Bertwills in reply to Tabi-Lion5

Glad to help. I think the Glasgow service is cheaper than the London one. I was surprised how reasonable it is considering it’s private. Hope LDN helps.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to Bertwills

Bertwills. That's good to know! Thank you so much!

OrangeGirl profile image
OrangeGirl

I have been on LDN fir the past five years. I have Hashimoto's and take 137 mcg of levo and 25mcg of T3. I didn't experience any miraculous difference although I do believe some people have if you follow the LDN fb site. However for me it has stopped the swings from hypo to hyper. I have had Hashimoto's for thirty years. Also I do know that if I don't take it for a few days my body develops the aches, particularly in my back, that used to plague me. These two benefits are enough for me to keep taking it. I'm in Canada and my Endo prescibes it. I take 1.5 mg. I have taken as high as 4.5 but didn't notice any further symptom relief so went back down. The drug is inexpensive and during Covid I requested to have the 50 mg tablets so that I could make my own liquid dose in distilled water. It was even cheaper this way than having then specifically compounded into 1.5 mg tablets.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to OrangeGirl

OrangeGirl. Thank you for your reply. I am hoping to get access to T3 one day (just waiting for my pension now) ... It just goes to show that as you said, if you don't take it, then you notice pain in your back. I had a slipped disc & Sciatica last year so would love some relief from those issues as well as Hashi's & Fibro. It's not easy to access T3 on NHS here in UK. It is possible but it's a battle to get a GP to prescribe. Or, at least it was when I tried. I think the cost has gone down now so it may be easier? Haven't asked GP recently. Glad LDN is inexpensive. Best regards!

seeking-answers profile image
seeking-answers

HI there.

In my experience, LDN helps some greatly, others not at all. I did some research prior to taking it, but proceeded anyway. It was HUGE in helping my get through the final hurdle of my very virulent Graves Disease (major neuro symptoms). Diagnosed (finally) in 2015, in remission in 2018. I believe LDN was a major part of getting me in to remission. I continue to take it every day as a preventative. I also take it at night. I usually am very sensitive to to meds, especially at night, but the LDN gave me no problems after the first week. My LDN is compounded and by prescription (in the US) but as part of my prescrition there are no fillers, dyes, etc. Good luck.

Tabi-Lion5 profile image
Tabi-Lion5 in reply to seeking-answers

seeking-answers. Thank you so much for reply. The more I research and read what others experiences are, the more I realise that it does indeed help some more than others. So glad you have had some relief. Good to hear that there are no dyes or fillers. I also hope LDN helps me with insomnia. If it did, that would be wonderful. I hardly slept last night. Best regards.

Tabi-Lion5 profile image
Tabi-Lion5

lioth. Thank you for comment. I know I am not doing so well on T4 only. Will be looking into T3 soon. I didn't know that LDN wasn't for a lifetime. Ah well, if it helps for any period of time it will be worth it (compared to how I am now!). I am sure you will continue to do well on T3 in any case. Best regards.

helvella profile image
helvellaAdministrator

For anyone who is interested, there have been a lot of papers on low-dose naltrexone:

europepmc.org/search?query=...

Some will, of course, be entirely irrelevant. But it is difficult to cut down the list without possibly missing some that are important.

wellness1 profile image
wellness1 in reply to helvella

Brilliant, thank you!

Tabi-Lion5 profile image
Tabi-Lion5

helvella, thank you so much. Just looked at some of this info. Very interesting. I scanned through it quickly (looking for relevant bits of info. Found some). Will take another look later and read more thoroughly. Best regards.

helvella profile image
helvellaAdministrator in reply to Tabi-Lion5

Tabi-Lion5,

Good!

(By the way, you replied to the original poster - I just noticed this by chance! You need to click on the blue Reply button - then I would get an alert. :-) )

Blue reply button
Tabi-Lion5 profile image
Tabi-Lion5 in reply to helvella

Will do next time! Thank you!

Sallybones profile image
Sallybones

a bit late to add a comment but just wanted to say I recently started Low Dose Naltrexone.

Not for any particular symptom but just for my whole complex body which had really come to a full stop. Perhaps brain fog and word loss being worst as I stopped being able to communicate well with people and enjoyment in life had died. So far so good, slight gradual improvements. Fingers crossed improvements keep coming.

thank you SallyB

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