Hashimoto's and LDN

[Burren]

Hi, I have read that Low Dose Naltrexone is a good treatment for LDN, but that it is controversial and it is difficult to get a prescription in the UK. Does anyone have nay experience of getting this drug, are GPs hostile, or open to try it ?

Thanks

John

[Josephineinamachine]

Hi I’ve been reading about this. Seems to help with pain I think? Will be interested in responses.

[Ezzie33]

Hi, I'm currently trialling LDN for my CFS. Had to get it privately though through a chemist in Glasgow (my GP had never heard of it). At my phone consultation, the doctor did say it can be useful for Hashimotos too. It's not too expensive - around £40 ish for the consultation & about £25 ish for the monthly prescription (my memory is not great for the exact amount sorry!).

Only been on it a couple of weeks so still early days for me to know if it's working or not. The LDN Research Trust have a good website with lots of info.

[kaju20 in reply to Ezzie33]

Hi! I've also got CFS and hashimotos, I've also been on LDN for a few weeks now. I've had some new symptoms it seems. I wondered if you've had any just to compare notes? I was so hopeful that this may help. But understand that not everyone may respond to it. But I did read it can take up to a couple months to get the desired therapeutic response. It would be interesting to know how you're getting on with it

[Ezzie33 in reply to kaju20]

Hello!So I started at 1.5mg, upping 0.5mg a week to a normal dose of 4.5mg eventually.

I felt a bit flu-y the first day, but not really any different to my normal PEM. Continued side effects are upset stomach, reduced appetite & 3am wake up. They're not bad enough to make me stop or reduce my dose though.

It's only been a couple of weeks but I maybe feel a bit more awake in my brain, like i'm wanting to do more stuff & can follow a conversation for longer. My body is yet to catch up though (I guess the side effects aren't helping with that...).

How are you getting on with it?

[Kalaberry in reply to Ezzie33]

Hi Exxon do you have the dentils for the Glasgow chemist u can txt me privately on 07935925381 many thanks

[kaju20]

Hi, I recently have been on LDN. I did some research before, I started on a very low dose of 2.5mg with the recommendation to slowly increase to 10mg. It is supposed to bring down my antibodies as I have hashimotos. A slow increase as apparently it is not tolerated by everybody. I've been having some symptoms that could possibly be related to taking it so I've stopped yestersay and will give a few days without and try again. As I have had no success in the UK getting any gp or endo to unify my symptoms and see that i have autoimmune i ended up seeing a specialist over zoom in portugal. He studied in the US, speaks perfect english. He wanted to try this before starting me on thyroid medication due to it being autoimmune. With his prescription, a pharmacy in Portugal sent me over the LDN no problems. I have a friend who's a pharmacist in the UK to check if hed heard any bad reports of LDN and he hadn't. He said at such low doses it didn't seem as though it would be a problem. It was just down to my body. If it would tolerate it or not.

This is my experience so far

[Burren in reply to kaju20]

Hi, thanks for you reply, I would be interested to get the name of the Portuguese Dr. if you could send me a private message.

Many thanks

john

[Maya_83 in reply to kaju20]

Can you kindly send me the details of the Portugal doctor too please Kaju.

Many thanks

[Hypopotamus]

I have tried LDN on and off for a few years now. I wanted to see if it helped ME/CFS/Hashimotos etc but I didn't notice much, if any improvement.

But what I did find was that the arthritis in my hands went away. I am currently restarting LDN as the arthritis is coming back.

I managed to buy Revixa tablets from Portugal (not sure if that is still possible post Brexit) and make my own LDN by diluting a tablet in 50ml purified water. When you know how much it actually costs, the prices charged for the ready-to use stuff seem rather high.

In short, my opinion is that it is worth a try.

[CharlieChan1]

I have Hashimotoes and I’ve been on Ldn for several years. It lowered my tpo antibodies by a few hundred points. I feel more limber on it. Less achy. It’s important to take it at night, so my dr told me. I have to be honest, it gives vivid dreams which I actually find interesting. I’ve never tried taking it during the day to see how it felt. As anyone taken it both ways and noticed different effects?

[Pvancourt]

Hi Burren, I live in the US and can only get it from my Naturopath. If you go to the LDN website they will help you find a Dr to prescribe it.