Low Dose Naltrexone

Just an update on my LDN journey.

As far as Low Dose Naltrexone (LDN) is concerned, it is an unlicensed drug which, as far as I can ascertain, means that it is not on the list of approved drugs for doctors to prescribe on the NHS, but that if they wish to prescribe it it is perfectly legal for them to do so. It's actions are slowly being understood, slowly because as a drug the patent of which has expired, there is little financial incentive for pharmaceutical companies to experiment with - sorry, research - it.

How it works is that it temporarily blocks the endorphin receptors in the body which, when taken late at night and the body is just about to increase the output of endorphins, fools the body into thinking it does not have sufficient endorphins and therefore has to make more. This, and other very complex biochemical responses which I won't go into here, mainly because I can't follow them, has a positive effect on the immune system. In short, the immune system is 'up-regulated'; sounds to me like it's rebooted. Where autoimmune conditions are present, this has profound positive effects. Apparently there will be a body of recent research emerging to evidence that, and the prescribing doctor told me that the medical establishment in this country is beginning to catch on.

 I have been taking it since early March and it turns out I am very sensitive to it - as with all other drugs. The effects have been, thus far, very interesting. The first and most profound is normalisation of my sleep pattern. I have not once woken in the early hours - from 3.00am onwards - and been unable to get back to sleep for several hours. I've been sleeping a straight seven hours a night. I have, however, also been sleeping more often during the daytime, for an hour to 2 and a half! In part I think this is because I have felt more alert and wanting to get up and go, although my get up and go has been gone for a long time and my poor, fat body is very weak. So I do more, in very short bursts, but get tired more. I need to get back to pacing, but the desire to be active is like a window suddenly cracked open in a dry and airless room.

And my hypoglycaemia problems are stabilising - something that Metformin failed to do as well as making me feel very ill. I rarely shake and feel like I'm going to pass out. Another thing, over 4 years ago I developed a horrible, ugly type of rash called Granuloma Annulare, of unknown aetiology and not sinister but I felt disfigured. On my hands, looking like ringworm to start with, and on my arms, shoulders, chest and back like tiny raised lumps – I felt reptilian! Although others said you could hardly see it, they were lying! It faded but you could still see its evidence. But since the first week of taking LDN – hardly any sign of it. Granuloma Annulare is an autoimmune condition. As is Graves – which started this wicked illness, Hashi’s which the endo reckons I’ve subsequently developed and then sensitivities to wheat, dairy, chocolate, and anything else that tastes good.

My bowels are becoming something akin to regular – which is for someone with IBS and diverticular disease, both welcome and puzzling. I mean, this is what it feels like to want to have a poo without bloating, gas, pain, constipation, diarrhea, urgency …? (Pardon the bluntness!)

Mentally I feel more alert, more able to concentrate – I’ve finished three books (Rose Tremaine and James Bollin, not the lightest of authors) and am nearly through a Donna Tartt (the closet thing I’ve been to a tart in weeks. How I miss the custard!); I have not been able to read through even an article in a magazine for YEARS. And my mood is becoming more stable. Less liable to retain aggravation, more able to recover quickly.

I’m up to 1.5mg a day, about to go up to 2. Up the dose very 2 weeks due to sensitivity, but folks, I think this drug is very interesting. Got well and truly disillusioned by the Metformin, which I thought was great at first until I realised that the side effects were getting worse not better, so I’m keeping my powder dry, but this is very hopeful.

31 Replies

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  • Great post Schenks,

    Rest when you need to rest. I know all too well the temptation to make up for lost time. 

    After a missed diagnoses for B12 deficiency and been unable to function at any great level, I got a loading dose of injections. 

    Within a month I was back to my old self, gardening, painting and cleaning guttering like there was going to be no tomorrow.

    That's when the #hit hit the fan, so to speak. I fell of a ladder and that was the end of my energy spurt. 

    So, the moral of my reply is; Take it nice and easy.

    Great that you have found something that is helping you.

    J

    😀

  • Thanks, Jose. It's comforting to know that the crash after the boom is not unusual - but sad that we seem to have to go through it. Did you never regain your energy even with the B12 injections? By the way, how come you had those, and did you inject yourself?

    Going to take your advice - but as you will understand, it doesn't half go against the grain!

  • Hi Schenks,

    I am hypo this 30 years and 2 years ago everything changed. Early 2014 I became very unwell, pains shooting in my toes and up my legs, unbelievable exhaustion, sleeping for 15 hours at a time,

    I became irritable, weepy, paranoid, couldn't tolerate loved ones. I isolated myself from everyone and hated myself more each day.

    Although never feeling great on Levo in all that time, I instinctly knew that this was 'something' else.

    During that year I had 7 thyroid tests which all came back 'normal' I asked to see an endo. My GP didn't think there was any need to see one.

    I cried, wept and told her, Doctor, I'm beat. She adjusted my Levo to 100/125 mcg.

    Apart from a personality change, I had a total change to my image. Paleness, hair loss, broken nails. Jezz my body was breaking down. The amount of time I was sleeping was embarrassing to say the least.

    I hadn't the energy, will or desire to wash, dress or make myself presentable in any way.

    Early 2015 my GP went off on Maternity leave and I saw a young locum. She referred me to an endo. I saw her on 30th April '15.

    Immediately on arrival, (she had looked at the Thyroid results on her computer) she said the pains are nothing to do with your Thyroid, we will do bloods. A few weeks later the results were Vitamin B12 and Vit D deficiency. Boy was I relieved. Ecstatic.

    I tucked that diagnoses into my pocked and knew that I would take responsibility for my own health from then on in.

    Then came Health Unlocked and ye wonderful people. A short while after the loading doses I had the bad fall that resulted in a bleed to the brain amongst other things. I self inject and have just started adding in a little T3 to Levo. I supplement with what I need. I am getting stronger, thanks to everyone who has replied or posted on these 2 great forums.

    I have just found out that I have complete loss of cartilage and labral tears in my right hip and will see what they plan to do when I see the surgeon next week.

    So Schenks, onwards and upwards.

    Sorry for the epic. Keep well,

    J

    x

  • Good Lord, Jose, what a terrible journey you've had. I think you are incredibly brave. Strangely enough, I had been 'stable' on Levo for 30 years (i.e. ignorant of chronic hypothyroidism and the low-grade, grumbling unwellness that you can't put your finger on but just believe it's you being a moaner) before it all went tips-ut! Same thing - irritable and distresses (being bullied, dear; just stressed), hair loss (perimenopause, dear), weight-gain (just your age, dear, as well as stress) ... and so on, until I totally crashed 3 years after that and was diagnosed with ME/CFS! I never was referred to an endo - EVER. It was only a chance conversation that pointed me in the direction of Dr Peatfield that started this journey, led to this site and got me absolutely *&%"+! furious and up for a fight. And thus began this long, slow slog back towards health. So I get you, and you have my absolute respect. 

    What made you decide to introduce T3 to your regime? I mean, did you have any blood tests for free T3 or did you deduce that you needed it from symptoms alone? And do you take synthetic T3, or is it part of NDT?

    But falling of a bl***ladder! A bang to the head ... jeepers, you are tough. So sorry to hear that happened to you. And so glad to hear you're still fighting back. You'll have lots of people on here cheering you on. 

    Wishing you Angels on your shoulders. x

  • Thank you for your kind words  and encouragement Schenks. I know you have had a tough awl time of it too. 

    To answer your question about T3, I got a Thyroid + 12 test done with Blue Horizon last month and it showed that I have lowish T3 and high rT3. 

    I have my own supply and members commented that it could be helpful to add a little in with my Levo dose that I reduced slightly. 

    I have cut out the Levo completely this past 2 days to try and lower the rT3.

    I will put up a new post for comments on this decision. Since joining  HU 6 months ago I read all I could before changing any meds. I've slowly introduced Vitamins and I feel better for it. 

    I did a gene test S and found out that I have a MTHFR mutation and am working on that one as well. 

    Never a dull moment .

    J

    X

  • I think you're amazing.

  • Ditto.

    X

  • Schenks,

    I'm glad it's making such positive changes for you.

    You might be interested in healthunlocked.com/thyroidu...

  • Thank you for the link - have heard from her. 

  • Well don Schenks after all your struggles. LDN is doing wonders for you and it isn't expensive either. Many will be envious of your 7 hours nightly sleep.

    It's great when an improvement in your health occurs even though it's been a long time coming.

    Are you still taking thyroid hormones as well as the LDN?

    Best wishes.

  • Hi, shaws - yes, still on thyroxine meds. 

    Tiny improvements that mean a massive amount. We forget how fabulous it is to be able to sleep!

    I'm having monthly TSH (!), fT4 and fT3 levels tested since LDN can alter the response. TSH up from 0.05 to 0.1, after reducing the NDT from 2 grains to 1, and increasing the Levo from 25mcg to 50. Interestingly I'm a bit hypo symptom-wise since starting the LDN - wonder if this could be my bod starting to utilise the hormone better? Currently on 75mcg of Levo (had the endo increase it from 50mcg just the other day) as well as 1 grain of Nature-throid. Seems like the old T3 is doing its job of TSH suppression. Am waiting for the endo to get antsy again and 'suggest' a further reduction of the NDT. Still, I don't mind trying it out, but I'm all for symptom control not laboratory appeasement! 

    As for a cheap drug, the prescribing doctor charges £30 a pop for a 3 month script; and for up to 2.5mg daily of LDN the pharmacy is charging £18 per month, increasing to £30 per month from 3- 4.5mg. Interesting, when the full dose (4.5 mg daily) of LDN bought from a pharmacy in Canada costs less than £4 per month! Boy are some doctors set to milk the cash cows. Again.

  • Whatever you're doing seems to be working well and at least your Endo sounds as if he knows a thing or two. I assume you have had to go private?

  • Your assumption is correct - and it's a her, and this is the one who was very snotty for a while, until I cancelled two consecutive appointments she'd sent. She seems to be more amenable at the moment, but that may well be because I'm not arguing. It may well revert back to snotty if she channels the TSH god as it tries to assert itself!

  • Your post is motivating me to try LDN again, so Thank You :)

    I took LDN for 6 months to no noticeable benefit (I'd been taking it to aid sleep and with a hope that it would do something for the scalp psoriasis). I recently read a claim that LDN doesn't work well when there is a vitamin D deficit (there's always something, isn't there). A recent blood test reported a deficiency (20nmol/L or 8ng/L) and I'm presently considering supplementation. At some time in the future when the vitamin D level is better, I may re-start the LDN and see if it does anything for me.

  • The prescribing doctor told me that Vit D enhances the effect of LDN, especially where there is a deficit, as well as beta-glucan. Just researching the latter. And LDN can take up to 8-12 months to work.

    I've also cut out wheat, sugar and am working on dairy. Did you try that? And how much LDN were you on? Did you take it at night?

    I'm glad you feel motivated. This is a very interesting drug - it's even being heavily trialled for cancer. And the research is showing it has a very, very beneficial effect in ALL cancers, not just breast.

    Don't give up ITYFIALMCTT. I believe the watchword here is ... patience. Not my forte, by the way!

  • I've blanked on the dosage but I think it was about 3mg (a 50mg tablet dissolved in distilled water and then I took <5ml so, fairly imprecise but around 2-3mg is a reasonable guess).

    I took it at night.

    I am gluten free, no added sugars etc. I might experiment with the dairy-free when I try LDN again after I'm vitamin D replete.

    Thank you for the encouragement. :)

  • Just a point - a 50mg tablet dissolved in 50ml of water will yield a dose of 1:1. In other words, 5ml of this concentration will yield 5mg of LDN. At doses above 4.5mls, the effects of LDN are diminished, so unless you were advised to take a higher dose rather than hold it at 4.5 for a year, with the Vit D at prescription level, you may not have felt the full benefit of LDN anyway!

    Don't give up. x

  • For your IBS and diverticular disease, you might get some relief from L-Glutamine powder. It is a conditionally essential amino acid that can be found in the gut and in the muscles of the body. The body's need for it is huge. It helps repair the lining of the gut and also helps people repair muscle damage from workouts, so is popular with the body building crowd. I take it for the gut, not for workout damage. ;)

    I have an undiagnosed problem with my gut and it causes me immense amounts of pain. I started taking a heaped teaspoon of the powder mixed with water twice a day and I began getting relief from the pain within a couple of weeks. I've been taking it for 3 or 4 months now, and have recently dropped to one dose a day. I still need my pain killers but if I was going to mark the pain out of 10 (with 10 being the worst pain I can ever imagine), then it used to be a 7 or 8 and is now about a 4 or 5. That is a huge improvement from my point of view.

    L-Glutamine is best taken on an empty stomach. Time of day is not important, and should be experimented with to find what works best for you. The powder must not be taken near hot foods or hot drinks because it is destroyed by heat.

  • Oh, hey, HB, thanks for this. Going to order some today. Where do you get it from? Can you pm me, please?

  • I just buy it from Amazon and check the reviews, I'm not loyal to any particular brand. The capsules are too low a dose, it has to be the loose powder you buy.

  • Gotcha. Have you ever tried MyProtein? they seem to be good on loose powders. and not expensive - it seems they buy from source and make up the powders themselves.

  • No I haven't, but I have seen good reviews about them before. I tend to stick with Amazon even if the prices aren't the best I could get, mainly through laziness.

  • I started on LDN this week and even searched for a post by you Schenks from a couple of weeks ago.  I'm so pleased you updated us as I was curious!

    So; so far so good? 

    On the information leaflet I received (or online?) I read that it doesn't make any difference if you take it in the am or pm.  If there is harder "evidence" of taking it in the pm, then I will. 

    I know it's incredibally early days for me (practically still in hours!) but I'm so hopeful, I really am.

    Please, please keep us updated and it's great that you are getting sleep etc!

  • Hi, Primrose - and I really appreciate the encouragement - thank you. 

    It is much better to take the LDN at night, whatever you may read. Only if sleep disturbance by heightened dreams is troubling (and the dreams seem to be more vivid as opposed to terrifying, so the evidence supports) should LDN be taken in the morning - it is for those people whom the time of taking doesn't make too much difference, since the sleep problems counteract the benefits. Taking it in the morning lowers the efficacy, but not by the hugest amount.

    It made me feel periodically worse for the first few days/couple of weeks, but it was episodic: a bit nauseous, a bit light-headed, an upsurge of the ME/CFS symptoms, but these calm down a few days after each increase and as I learn to stop doing too much. 

    Reading your body and tuning-in to what it is trying to tell you ... go slower, take a rest, have a sleep, veg-out, have some fruit, drink more water - the latter is VITAL ... and you'll find yourself beginning to be a bit amazed, is my guess.

    Very best of enjoying it to you; I don't think you'll be needing luck. this is an interesting medicine.

  • Hi Schenks, did you get any stomach cramps in the early weeks? This was one of the reasons I stopped taking mine. My LDN was from India.

    It does all sound very promising so far for you!

  • Hi, Helcaster - a couple of times my tummy felt a bit 'dickie', and occasionally sore, but nothing compared to the IBS attacks. It seems as though it was my bowel beginning to remember what it's supposed to do! Not fully there yet - and I've been on this for going on for 2 months now, but getting better and better.

    By the way, peple with ME/CFS are supposed to start on 0.5mg, rather than the 1.5 as 'normal', but it was way too much for me and I was really quite ill; nauseated, serious relapse in ME/CFS symptoms, weakness, irritability, bowels haywire - I dropped to 0.5mg and have raised the dose only every fortnight, initially by 0.25mg. Very, very slowly seems to be the way, and if you have a lot of side effects, the drug is having an effect. 

    My suggestion is if you were to try again go at the pace of a snail with a migraine!

  • Schenks, great to hear how LDN has helped you😃

    I've taken it 5.5 months now for FM/CFS with good effect on energy and pain level. My sleep quality is so much better too. 

    As a 'side effect' my lichen sclerosis is healing up which is just wonderful and my IBS is much better too  

    I started at 0.5 mg and increased the dose slowly. The last week I'm on 4.5 mg. 

    I will describe my QOL before LDN as 2 on a bad day and 4 on a good day  

     (1-10 with 10 as the best possible) 

    After LDN QOL is now 5 on a bad day and 7 on a good day  

    It's indeed a very interesting drug! 

    I have the newly released LDN book and there is so much wonderful info there 👍🏻

  • What is the initial lower dose? How long until you can up your dose since the beginning?? I am really interested to try ldn too as I am trying to get pregnant and I read that this can help the pregnancy in all matters,. 

    Many thanks

  • Cavalli13, There is no set initial dose but experience shows that if you go 'Low and Slow' you can avoid or minimize initial side effects. 

    Fx start with 0.5mg and increase with 0.5mg every week or more, depending on how you feel  

    Some can start with a higher dose like 4.5 mg and do fine and some must go down to 0.1 mg in order to tolerate it. Very individual! 

    Great to educate yourself by reading the different sites about LDN  they have loads of good information  

    lowdosenaltrexone.org

    LDNscience.org

    Ldnresearchtrust.org

    There is an Irish fertility doctor dr Phil Boyle that uses LDN with great success. You can see lectures from him on YouTube. 

    Good luck. 

  • Many thanks!!! I will check it!

  • Hi, Cavalli. The LDN research trust's link is: ldnresearchtrust.org/ There are factsheets and information aplenty on the site.

    However, I have not looked at the issues around pregnancy and my advice would be to speak to the prescribing doctor and take advice from him. If you would like the contact details, just pm me and I'll pass them on.

    All the best! 

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