My LDN experience - any others here tried it?

I just wrote this to a friend and thought I would copy and blog it in case it's useful to anyone else considering using LDN for autoimmune hypothyroid issues or maybe prompt others to share some experience of LDN.

Mine's not a very cheery tale but here it is...

Didn't feel very well with the LDN. Was very hopeful to begin with but 2 weeks in was feeling all my symptoms worse than usual which came on each day after taking the med. I didn't get past the small starting dose. I've stopped now. I've been told I didn't try it for long enough. I don't know how people can tolerate side effects. For me bad stomach / bad head / spaced out / depressed / lethargic - that's on top of my usual ME/CFS stuff which is a total drag but usually manageable.

If I was going to try it again (I don't feel like doing it again at the moment) I would have to try and prepare for 2 months of being able to do less than usual (and feeling even more zombie like than usual) just to see if I got over the hump.

On top of this my 'consultant' (doc in Scotland) didn't respond to polite email asking for simple advice even though I would have ended up paying 110 pound per year for 'consultation' - which is really just for him to write monthly prescriptions - nice work if you can get it. The LDN would cost me 15 pound per month on top of that.

Perhaps there are others with more positive experience of LDN - they must be out there?

Cheers and best wishes, Andy

6 Replies

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  • Andy, I have ME/CFS in addition to Hashimotos and am on LDN. I've been on LDN for about 2 months now and feel that it is slowly making an improvement. The only real downside for me is the amount of dreaming that it causes, meaning that I wake up even ore tired than I did before.

    However, despite that tiredness, I feel better in the mornings, not so wretched. I also note that my body is much more physically relaxed than pre LDN. Currently I seem to have a bit more energy too although I get ups and downs so can't attribute that to the LDN this soon.

    I pay £30 for about 3-4 months supply of liquid LDN from an on-line pharmacy. Quite frankly, I would never pay a doctor for advice when I have never found one anywhere near as well informed as myself, or others on this site.

    I assume that you have been taking the correct dose (it's easy to mess up mcg, mg and ml) and that you were taking it last thing at night.

    The symptoms you report may simply be a healing reaction, and unfortunately these are often unavoidable if we want to get better.

    I hope this is of help to you.

  • I am on LDN and must say , I am feeling much better, despite at first side affects at first,, I have numerouus health problems and just had surgery and radiotherapy for breast cancer, saw oncologist no sign of cancer, it does not mean it that it could return, blood tests all normal.

    Helen

  • Hi I meant that there is possibility it could return.

    Helen

  • Hi Andy,

    I have autoimmune thyroiditis with bouts of hyperthyroidism and prescribed carbimozole until TFT's normalised then no help from the NHS despite continuing horrendous symptoms. Chronic fatigue and a myriad of symptoms and became virtually house-bound and lost my job and income. I started taking LDN March 2012 and initially symptoms worsened for a while and mostly slept day and night but sleeping fantastic as previously experiencing chronic circadian disruption and not had a nights sleep in 2 years. Since taking LDN my sleep patterns normalised and symptoms gradually worn off with improvements in energy levels, neuropathy pain, throat problems, muzzy head, concentration and ringing ears etc etc. I understand that LDN does not work for everybody and for some people can take 6 - 12 months to have any effect. Still not 100% but gradual improvements and now cannot live without my LDN. Hope this helps.

    Isis x

  • I am having so many problems with Hashimotos that I would dearly love to give LDN a try. Currently taking Armour, 1 grain split in two doses and my meds are sent from the States at the horrendous cost of £50 per 100 tablets plus duty paid this end. My doctor flatly refuses to give me anything buy Levothyroxine and as my symptoms do not seem to be much better on Armour, I am thinking of returning to Levo. I have horrible swollen gland symptoms and sleep patterns are terrible. Foggy thinking and water retention. All the rubbish stuff you get with this condition. I haven't got a thyroid problem, I have an autoimmune problem, but the NHS is not one bit interested and sends each and everyone of us off with thyroid medication. I have given up Gluten, have the very occasional glass of wine, low sugar etc. etc. My antibodies were high when I last had them tested, which I also paid for £136, as the NHS is only interested in that stupid and dangerous TSH test. Where on earth am I going to get LDN from? I feel as though I am fighting a system and this bl----dy condition as well. I really think it is easier to get crack cocaine than drugs like armour and LDN!!! How ironic.

  • Hi there, I see this post was made over 3 years ago, so I am wondering if there are any updates? I am new to hypothyroidism and have been looking into LDN. Most everything I find on the web is very hopeful, yet this post gives me great concern... I was hopeful it would increase my energy, not make it worse.. Please advise and I hope all of you are doing well.

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