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

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Low Dose Naltrexone (LDN)

18 Replies

Has anyone out there with Hashimotos or other auto immune conditions tried Naltrexone?  It can be got here in New Zealand from a compounding pharmacy, but only with a doctor,s prescription.  Has anyone tried it and found it beneficial?

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18 Replies
crazykoala profile image
crazykoala

It's certainly worth a try. I have hashimotos and did try it a few months ago. I recommend starting on a very low dose as we are very sensitive. I started on 1ml and had terrible trouble sleeping. I increased to 2.5ml and found a great benefit in mood and morning pain & stiffness -  I felt much more alert & like the old me. It also helped with gut issues.. But, sadly the lack of sleep didn't seem to stabilise for me so after no sleep for 4 days I had to quit! Also my thyroid went slightly hypo. I believe most people find the opposite - your thyroid can go hyper as the autoimmune condition lessens. I have decided I will try it again but increase more slowly next time and maybe try the daytime dozing instead. Good luck, I really hope it works for you, as it is for many others :)

Lucieb01 profile image
Lucieb01 in reply tocrazykoala

Iam back taken ldn after taken a virus I had for 3 mths I was at 3ml now I am at 1ml and things are looking good but will increase slowly I am in UK and it is private keep well x

rsae56 profile image
rsae56 in reply tocrazykoala

Crazykoala, Sad that you quit so soon. Usually the side effects go away within a few days to weeks. You can switch to morning dose, it often helps with sleep disturbances 

My sleep quality is now better than it has been in many years. 

crazykoala profile image
crazykoala in reply torsae56

Thanks, that's  good to hear! I took it for a month but do intend to try it again, and as you suggest take a morning doze. 

Schenks profile image
Schenks in reply tocrazykoala

That's really interesting to read, about going slightly hypo. How did you know - just by the symptoms, just by the blood tests or both?

crazykoala profile image
crazykoala in reply toSchenks

I couldn't tell if I was going hyper or hypo. I thought maybe the symptoms were due to the lack of sleep but at the same time I was more alert, so was rather confused. I was told to have a monthly blood check anyway - my TSH went from 1. 0 to 3.4! 

Schenks profile image
Schenks in reply tocrazykoala

How very interesting. See, I feel much more sleepy yet much more alert too! I've just had my 1st month's blood test - it will be very interesting to get the results! 

Did you raise your meds or just come off the LDN? 

By the way, my reply to mongolia got mixed up with my thinking of your post - so the reply lower down the string is really for you!

sulamaye profile image
sulamaye

Initially it seemed to help, then it was expensive so after 9 months or so came off it and noticed no ill effects so concluded may have been placebo for me.

rsae56 profile image
rsae56

I've used it for five months with great improvements on my fibromyalgia, sleep disturbances and even my lichen sclerosis is healing up. It's a wonderfull drug. 

I follow serveral fb groups where there are lots of testimonals from people who have got help. 

Schenks profile image
Schenks

Been on LDN for 6 weeks now, and I really do think something good is happening. Little things so far, such as being a bit more alert, a bit more of being active and one big thing: before this damned ME/CFS made my thyroid meds go haywire (or vice-versa) I NEVER got colds or flu. Since then I have caught every blasted cold my husband has had - and he gets them with monotonous regularity throughout the winter months. Since I started taking the LDN (2 weeks in) he caught a horrible flu-type virus. Apart from wedging a pillow between our faces so that I didn't get his virus-laden blasts full-face, and not kissing on the lips, I didn't come down with the illness.

Now, that's unusual. Despite every precaution previously, including either him or I sleeping separately when he's ill, I've always caught them. But it seems like my immune system really is beginning to reboot.

I was very sensitive to LDN, by the way, and started on 0.5 mg per day. I could only go up by 0.25 mg once a week or fortnight, depending on how I reacted. Once I got to 1.5 mg, it seems to have become less of a shock to my system to raise the dose by 0.5 mg, but I'm still only doing that every fortnight.

On 0.5 mg I noticed my dreams were more vivid or memorable, but not frightening. It seems for me that the slower I go, the better I acclimatise. And one more thing, I take the LDN very last thing before I go to bed, when I'm really tired, washed down with a good glug of water. I'm asleep too fast for it to make a difference, I guess - and I've had terrible insomnia problems, so I think it's helping there too. Give it another go, I'd say, but be ultra-patient and go really slowly.

Good luck.

Schenks profile image
Schenks in reply toSchenks

Sorry, mongolia - got my answer to your question mixed-up with crazyckoala's.

So, in answer to your question, yes I've tried it, yes it';s good - give it a go!!

DonnyJam profile image
DonnyJam

I'm planning on starting LDN in the next day or 2, I'm really looking forward to starting it to see how my overall health improves.

maro profile image
maro

Hi everyone, sorry if I'm coming across a bit dumb here but do you take LDN instead of thyroid hormones or as well as?

stig5882 profile image
stig5882 in reply tomaro

I also would like to know if you take with levo/T3 etc.?

in reply tostig5882

From the info I have been given by the compounding pharmacy (the pharmacy gave me the prescription sheet they usually give to doctors), those who take LDN MAY need to lower the their dose of thyroid  hormone.  That is why the dose of LDN must be increased very slowly to allow the body to adjust.  Actually compounding pharmacists seem to be more knowledgable than doctors!  I am on Natural (porcine) thyroid compounded by this same pharmacy.  I live in NZ.  Three months of LDN here costs around $98NZ for 3 month's supply of 0.5 mg (the recommended starting dose)

in reply tomaro

No, don't stop your thyroid hormone. It's not to replace thyroid hormone. If you do that you'll become hypothyroid.

It's simply to calm your immune system, hopefully reduce antibodies and help releave joint pains associated with hypothyroidism. You will see various other physical and mental benefits if you try it. It tricks your immune system into producing extra endorphins that make you feel good. Helps your immune system get a chance to heal your body.

On starting you may become hyper quickly and will need to reduce your thyroid hormone accordingly. 

I've tried it for a year before. It was very good. Best used with gluten free diet. It's a tool in your box against hashimotos and many other diseases.

maro profile image
maro in reply to

Thanks for the reply jobeth, I had never heard of it. I would be keen to try it, I have hashimotos with quite high antibodies I'm taking 4 grains of NDT, Adrenal Cortex and various supplements, still feel there is room for improvement . Some mornings I feel as though I have been hit by a truck...joint pain, stiffness and the overwhelming urge to stay in bed all day. So I guess its worth a try.

Thanks again Jo

Mary x

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