My LDN update

Well, been taking the stuff since March, up to 3mg per day and I'm startled.

Each day, instead of thinking 'oh, I just can't...' be bothered to wash up, do a bit of dusting, continue to paint my fish pictures, attend to the garden, water the plants, have a shower, get dressed, make something to eat, get a drink, have a pooh, read a book, do a bit of ironing, take the dogs for a little walk, go upstairs to put makeup on to go out, go out, blah blah blah, I now find that I've hauled my still-fat a**se out of the chair and that I'm actually doing x, y and z. I find myself surprised that I don't feel as leaden, exhausted, flat, dull, despondent, zonked, zombified and out-of-it as I did, and I'm surprised by my surprise at noticing little improvements daily, as opposed to feeling defeated daily by what I can't do.

My energy levels are slowly rising. Mind you, my stamina is non-existent, and I'm very weak; I sleep for maybe an hour and a half to two hours after a little walk with the dogs but, once a week or so, I reckon that's a reasonable trade-off for my poor body to begin to be remember how to move at all after nearly 10 years of completely disabling illness passed of as "well, it's ... your age/Fibro/CFS/thyroid problems/but TSH is in range/becuase your TSH is too low/b-off and leave us alone you heartsink hypochondriac" from all manner of medics. Still transposing letters though!

Having said that my mind is sharpening too. I still have moments when I wonder if it's Alzheimer's or ME/CFS, like dropping one of the kitchen pens into the utensil holder rather than the pen mug, but these are becoming less frequent, as are the number of my husband's standard reply of "have you tried the fridge" when I ask him where the hell are the keys/dog leads/keys/my phone/keys/my handbag/glasses/keys/dogs. I am remembering where I put the bl***y things in the first place. I find myself walking into one room to stand there wondering what the hell I went in for in the first place quite rarely now! Word-finding problems are becoming far less frequent too and when I do fade, especially when I've overdone it, which is all the time (like I've stumbled out of imprisonment in an oubliette - feel the need to keep moving) if I wait the words come back. Oubliette defeated me, though - mustn't get too cocky!

And this is an important point for me - the ME/CFS nurse, a lovely woman with a fine moustache, was very reassuring about it not being Alzheimer's, explaining that the low availability of energy causes the brain to shut down some of its activities, like attentiveness to extraneous detail, so that I actually didn't notice where I put things as opposed to forgot where they were. Big difference. And very comforting.

My pain is down, and here's the thing; I don't have hypoglycaemic attacks - at all. I'm not wanting to stuff my face with carbs all the time so the cycle is broken. Now then. Spot the interesting potential in that one.

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  • Wow! Did you do this with professional help, or just go out and buy the stuff?

  • Hi, Ruthi, I did a lot of reading around the drug and after pointers from here discovered the only place in the UK to get a private script from - pm me if you want to know. I had a 15 minute 'consultation' with a doctor, paid £30 for the privilege and then paid £18.50 per month for the LDN to be dispensed and sent also from Glasgow.

    I went to this doctor to start with as back-up against any negative effects and queries, but haven't really used him. This fourth month they would have sent me a 3.5 mg dose for the next four weeks, but since i have to take it really slowly I cancelled. That reason as well as I have sourced the drug from a reputable pharmacy overseas (after much research!) and will be diluting it myself. Instead of the cost rising to £30 per three months prescription from the private doctor plus £18.50 per month from the pharmacy rising to £30 per month for dosages from 3mg to 4.5mg (the optimum), I will be paying around £4 per month for the drug alone.

    I feel quite confident about the drug now to do so. That and the fact that my ME/CFS specialist both suggested I take it and that I buy it online - that';s how safe this is!

  • Hi Schenks. Would you ok me the LDN details, please? I have Hashi's and would like to try it. Many thanks. X

  • Oops. That should've said 'pm', not 'OK'. 😄

  • Pm'd as requested.

  • Hi Schenks. Could you pm me your source? I'm using the Glasgow pharmacy but wouldn't mind saving a few bob. I'm on the capsules now and they're more pricey than the liquid.

  • Oh my, Schenks !

    How completely wonderful I'm so thrilled for you ! You have long been the go-to poster when I'm feeling blue, mostly for someone to affirm my worst moments in this thyroid nightmare and I'm thinking I should try me a bit of LDN. Have you noticed any negative side effects ? How are you dosing your LDN - splitting up a larger dose or making a suspension with water ? Questions questions...but mostly so pleased for you. Long may your improvement continue xx

  • Hi, Rapunzel - thank you for the compliment; I feel rather flattered. I am glad if I can help - I know how important it is to feel at least some hope.

    I've had a quick read of your posts and see you are evidencing autoimmunity. so my first reply to you is ~TAKE THE LDN! Sorry to 'shout'.

    Perhaps that should have been, I think LDN may well help you.

    Next:-

    Side effects: at first I felt slightly nauseated, a little woozy, and then absolutely dead ill; it seems I mistakenly started on 1.5mg; a tsunami for CFS sufferers. Brain fog prevented me from absorbing the info properly. So I went back to 0.5mg and still felt a little nauseous and light-headed as well as an exacerbation (low level) of symptoms for the first week. I raised the dose by 0.5mg per fortnight and feel a return of slight symptoms for the first week - actually, now only for the first 2-3 days before the interesting stuff, symptom-wise, kicks-in. So each dosage increase I am aware I will feel a little off-colour before it all settles down again.

    I take the dose in one go: You have to do this, after 9pm and before 3am, in order to kick-start the body's endorphin production. It has been said that for some people taking the stuff first thing in the morning might be just as good, but I think that is only for those who find their sleep pattern disturbed. My sleep pattern has gone from wakening at between 2-5am every morning and not getting refreshing sleep to sleeping like the dead for at least 7 hours straight, on this drug, so for me, lat night dosing is the choice.

    I will be making a suspension of 50mg of the tablet in 50mls of strerile water and drawing it up at the necessary amount, once I get through the pharmacy lot. Apparently it tastes like sh** and the best way to neck it is in tart cherry juice - the flavinoids are supposed to enhance its action. How that could be I don't know because this is pretty amazing stuff, but I'll be doing that too.

    I take high doses of Vit D and the K2 to go with it - that enhances its actions, and high doses of sublingual Vit B12 and the folate to help its absorption - Marz and Humanbean explain all this very succinctly in their replies to my last LDN and B12 posts.

    Lastly, the dreams are amazing! Not scary but vivid and fascinating. i have my own theory about this, that the brain is healing itself, catching the psyche up with its own workings through dreams.

    Anyway, thank you so much for your encouragement. I hope mine helps you make the leap. x

  • Wow ! This sounds like a wonder drug, like Ruthi , how did you find it & are you getting help

    So pumped for you, it seems you've found your get up & go at last.

  • Thanks, Rennixon for your enthusiasm - it's really moticvating me to continue to write about it. Is it ok to point you to my reply above to Rapunzel in response to your question?

    I 'heard'out about it on here, of course! I spotted a bit of a discussion - but only a bit, and followed the trail as it were. This should be being shouted about! I also discussed it with my ME/CFS consultant and he was very encouraging.

    I'm discovering my get up and limp!

  • Yes of course it is Schenks . Ha ha at least the limp has got up, hope to hear an update soon... Baby steps!

  • Hahahahah!!!! Won't tell hubby ...

  • I can see I need to do some serious reading.

    As far as I know I am not autoimmune. My probably already weakened thyroid was likely damaged by drug treatment. I was, of course , told I had ME/CFS when my thyroid was failing, but TSH not high enough to be deemed worthy of treatment, no matter how symptomatic I was. But having lived with someone who definitely had it, I was unconvinced.

    The thing that attracted my attention was your bit about motivation. I feel OK now, but just lack the oomph to get on and do stuff.

  • Hi, Ruthi.

    You say your thyroid was already weakened - by what, since you indicate it was before further damage by drug treatment?

  • Well, more likely congenitally weak if I am strictly accurate. I was always a low energy even as a child. Then when I was fighting for a thyroid diagnosis my GP went back through my history and it was clear that my T4 was always low. I knew nothing about it, but I was first tested in my late 20s and it was already at the bottom of the range. No T3 testing in those days, of course.

    I knew so little in those days. If I had realised the implications I would never have agreed to the medication!

  • What do the doctors say makes your thyroid weak - do you know? Have you been tested for autoimmune thyroid problems?

  • You are joking, aren't you? Test for autoimmune problems? They just denied it was my thyroid for years. When testing was eventually discussed it was all too late - nothing left to test. BUT I had none of the wild swings of energy that come with Hashi's, just a long slow decline.

    I have a history of low energy, constipation etc right back into childhood. It was Dr Skinner who pointed out that I was probably mildly hypo all my life, but just got by, but the drugs just finished me off. The thyroid simply atrophies with them.

  • I suppose it was a dumb question, really. But the probability is high you have autoimmune problems. The very fact your thyroid function diminished over time indicates some sort of autoimmune cluster. So I wonder if you would consider LDN? (Don't want to sound like an evangelist, but this is, as they are calling it - they being specialist medics - the game changer).

  • Haha dear Schenks , you gave me a chuckle .

    So glad you are on the up , long may it continue !

    Pp

  • :D x

  • Hi, ive hashimotos and I took ldn for a year, couple of year's ago. I was on ndt at time 3 grains. After starting at 1.5 mls by next morning I was hyper, I was a very happy happy hyper probably high on all endorphins. 😊 I reduced my Ndt to 21/2 grains and continued on Ldn and Ndt feeling bloody fantastic and all the fibromyalgia pains and low mood had gone and I even lost couple of pounds and was like I say very happy. I had no sleep problems at all. However over the weeks and month's I had to keep reducing my Ndt because it was too much for me. I ended up on 1 1/2 grains of Ndt and still was feeling great. I had a blood test to see how I was but I was shocked it showed I was hypo and I didn't feel that bad, but it slowly hit me as I still didn't increase Ndt. I then tried to increase Ndt but felt as though the ldn didn't allow me making me hyper and I came off of it. I had worked my way to 4 mls in the year but 3mls was my dose I liked.

    I felt the good effects for couple of weeks after stopping it. I eventually moved up my Ndt again to regular dose as before.

    I felt so good on ldn that I didn't realize I'd gone too low with my thyroid meds and they were still necessary for me.

    I did get it on prescription and in glasgow, made up. And consultation with Dr.All above board but I had no Dr to oversee me to help me despite all I'd read. I'm no expert.

    So I gave up because my thyroid meds are more important. It was an excellent experience and very enlightening.

    I would do it again in future now I learnt from it. I would recommend it.

  • Hi, Elizza,

    The trick for most people is to start very very low on LDN, with hypothyroid and ME/CFS. I started on 0.5mg of LDN after a silly start on 1.5 - silly because I didn't pay attention to the instructions (actually, brain fog). In fact I needed to go up in thyroxine dose - may still do, because of the initial exacerbation of the ME/CFS symptoms. I think the LDN is allowing me to utilise thyroxine better in some way and therefore need more. After nearly four months I'm still only on 3mg. also, thyroidies are told to have monthly blood tests to ensure they are not overcompensating with the energy boosts by lowering the thyroxine meds. It seems that you were badly advised, and I am really sad about that, especially since you had such wonderful results at first. The Dr should have helped you - did you ask him or try to contact them - they've not been that forthcoming for me, other than taking my dosh i have to say.

    i wonder that if you had gone as slowly as me - increasing by 0.5 mg every fortnight and having monthly bloods, that you might have had a better long term outcome? what do you think?

  • Hi, yes I was advised 1.5 mg start. Went pretty slow, took a year to get to 4. mg but backed down to 3 mg. I told my own gp what I was taking and why. He had no clue as to why I'd take such a horrible drug for alcoholics he said.Anyway he's hopeless, waste of breath.

    I'll consider it in future possibly. I'll go get a antibodies test first.

    Maybe start lower like you suggest.

    Good luck

  • thank you! Just out of interest, why did you reduce the thyroxine dosage?

  • Because that's what ldn does upon starting it , you can experience an abrupt response hyperness, as I did. It's a good sign means its working. It puts the block on TLR - 4 receptor cells which cause a break in autoimmune cycle. Leaving your own thyroid to hopefully work a little. Lowers antibodies, Regulates immune system.Calms inflammation.

    Ldn, tricks your body into producing excessive endorphins. These endorphins give your immune system a chance to heal itself.

    Endorphins are low in people who have chronic autoimmune diseases.

  • I understand the mechanism of how LDN works, but I was wondering what symptoms you had that made you lower the thyroxine dose: like did you have a racing heart, tremours, sweating, increase in appetite, anxiety - that sort of thing? What were your particular symptoms of thyrotoxicosis?

  • Sweats, loose bowels, palpitations, fast pulse, over activity, couldn't sleep, tremour.anxiety.

    People do go hyper on ldn.

    I was aiming to use less thyroid because of taking ldn.

    It wasn't a replacement for my thyroid hormone just another tool in my kit to help against hashimotos. It's very good.

  • I think it was potentially brilliant - worked really well. The problem I guess was your sensitivity to the LDN - you must be really receptive. Do you think if you'd stayed at a lower dose it would have been more beneficial?

    And what a kicker that the prescribing doctor was not there for you. Smacks at malpractice to me. But who am I to say anything against the gods of medicine!

  • It did work brilliantly I wouldn't fault it at all. I think 3 mg was my dose but it was my fault just simply lowering thyroid too much because I felt so good. Made me realize I still needed some thyroid though, only after blood tests. It definitely took all the inflammation down I had.

    I've cleaned myself up better now too no gluten dairy etc, so if I try again I'll be better again.

    I think its an amazing drug. I really do.

    Good luck

  • Thank you. And to you too.

  • So pleased for you Schenks, onwards and upwards!

  • Thank you, Fairy!

  • Hi my Dear,

    Appreciate you keeping us updated on LDN.

    I will be picking your brains at a later date re above, well done S, you deserve to be improving with all the research you put in, as we all do. Thanks for sharing.

    I'm in Budapest getting my Gobblers sorted. Traumatic day yesterday 😭 but feeling a bit better today Thank The Lord.

    Keep well Schenks

    J x

  • Hi, Babe - thank you. Good to hear you're getting something sorted! Although I'm hoping Gobblers means your teeth?

  • Exactly Schenks,

    I got wheelchair assistance through Dublin Airport and again in Budapest. I had started this dental work before I fell. Otherwise it would have been put on the long finger.

    I am so happy for you S.

    God Bless

    J x

  • X

  • I've started a new reply - the other thread was getting too narrow to read!

    So I am still pretty sure I don't have/didn't have Hashi's. Its common to become hypo via Hashi's, but not everyone does. But in a way it doesn't matter now because I'm going to read up on LDN regardless of the AI considerations. If it looks like it might help I will be in touch!

    Its fine to be evangelical. We all make our own choices in the end.

  • Pithy, sane, balanced and reasonable. Refreshing!

  • Thank you so much for this information, so pleased that the ldn has been a success for you. My sister has been getting ldn from Glasgow for a while now (she's now on 4.5mg) and says it has helped her tremendously - she has MS, AS and Hashimoto's. Having read your post and done some Googling around, I told her about the possibility of making her own suspension for a fraction of the cost of the prescription ldn, and she was most interested. I would be very grateful if you would pm me details of the place you have found for obtaining the naltrexone tablets. Many thanks.

  • Hi, Pollyana,

    Sorry if I seem a bit neurotic, which I am, and/or a little paranoid, which I also am, but having looked at your profile and seen that you have either not posted anything or kept your posts private, I feel a little uneasy that you might be from the medics-we-are-gods-thought police and patrolling to find loopholes, through which sufferers manage to buy needed supplements, to close-up.

    Just because I'm paranoid doesn't mean they're not after us! Not sure how to get round this - any suggestions?

  • I think I have only ever responded to someone who was asking about an endocrinologist (Paul Price), and that was a pm. I am sorry if you are suspicious of me, but you really couldn't be further from the truth. I self-medicate with liothyronine which I buy online. I had it on prescription from my GP for ten years but it was stopped over a year ago on the instructions of the CCG. I will not bother going to my GP again. My sister was left untreated for her hypothyroidism for years, was bullied by the same GP for being overweight. She started on the ldn to try and alleviate what were obviously hypothyroid symptoms. Eventually it was the rheumatologist at the hospital who pointed out to our GP that her TSH was 18 and she should be treated for hypo (the GP had ordered the tests but not acted on the results). She got levo, grudgingly, and was left to get on with it. I have given her some of my T3 which is helping, and we now get Greek T3 from a friend of hers who lives over there. I don't know how I can prove any of this to you, sorry! Could I pm you copies of doctor's letters or something like that?

  • Thanks for your reply - have pm'd you. :)

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