Thyroid UK
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Has anyone tried LDN Low Dose Naltrexone?

Hoping that someone with autoimmune condition will share their experience with LDN.

I have myasthenia gravis, Hashimotos and chronic urticaria. I have changed my eating habits (on autoimmune paleo diet) which helped a lot and switched from levothyroxine to ndt. However, I still suffer from fatigue, brain fog, hives, and double vision. I've only now heard of LDN and want to give it a go. I'd be grateful if you lovely people could share your experience with it

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If you are on a phone scroll down and down to RELATED POSTS - where you will read many more posts like yours. On a PC they are listed to the right of your post. 😊😊

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Thank you Marz. I see it works for some and want to try it. I'd be very grateful if someone here could share where to buy it online.

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ldnresearchtrust.org will organise the prescription and Doc for you ....

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Thank you Marz

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Have you considered you might have Adrenal Fatigue? I have Hashimoto's and they tend to go hand in hand.

Autoimmune Paleo is good to maintain (Ketosis diets are also good for autoimmune diseases).

I have heard LDN is good for lowering inflammation caused by autoimmunity but as you are already on an anti inflammatory diet, wonder whether it's Adrenal Fatigue you have? Just a thought!

LDN is not something my GP knows anything about.

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Hi Dalmation2,

Thank you for your reply.

Yes, I'm taking Rhadiola and adrenal extract which help but the symptoms I mentioned persist. Would you suggest something else?

I'm not even going to ask my Gp for LDN, there's no chance he'd prescribe it. That's why I'm trying to find out where to buy it. The autoimmune diet is great for inflammation indeed, but LDN also has immunoregulatory effects and that's why I want to try it.

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Hi

How long have you been taking your adrenal support? It can take along while (I was told a year) to get back to full strength. I took Dr Wilsons adrenal rebuilder and stopped within 6 months but need to go back on it as I've slowly got bad again. Just about to have another adrenal Saliva test done so that should be interesting.

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ive been on it for 2 months, I'm not sure if it's doing anything...can't afford tests

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AIP diet caused my hypothyroidism. This diet does not support thyroidfunction. It often takes away symptoms in the beginning because it pushes cortisol production until it backfires. This was my experience and seem to be one many has had:(

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Hi, I was on AIP for 6 months, now I'm just gluten free which is why I thought the AIP worked for me. It's the gluten that was contributing to my weakness and fatigue. Ive never heared of AIP causing hypothyroidism

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Hi, I take LDN as part of a very complicated protocol. I found it improved my sleep but had little effect on my fatigue or body pain etc... it seems to be a panacea to some and a dud for others. I have hypothyroidism and adrenal fatigue originally told by gp I had fybromialgia and then years later chronic fatigue. I was exhibiting classic hypo symptoms yet several tests a year for 21 years always came back normal!? Anyway along with a gluten/dairy free diet have you tired B1? 600mg relieved fatigue in a group of people fairly quickly. B12 levels should be optimal (top of range) An elimination diet can identify hidden intolerances, as not all healthy foods are healthy for everyone! Some people also make the mistake of getting too low carb on Paleo diets which can increase adrenal problems see (Dr Ray Peat's work). Hormones can also be out of wack such as low progesterone.... I think it's very personal, each person will need to tweak their protocol fairly regularly, until they find the protocol that works.

I think I got in touch with clinic 158 to get the LDN.

Good luck. ☺

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Thanks Ebs73,

Yes, I take a b complex and many other supplements. My diet is very strict now and I'm learning my sensitivities. It definitely helped with hives and feeling better overall. It's only been 10 weeks though so I'm hoping I will continue to improve. I don't limit carbs, eat as much as I like, mainly sweet potatoes, carrots, squash. I will look into hormones ...thanks so much for your help.

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I started it a couple of months ago and am so far very happy. I am starting to feel more energetic. It isn't the whole picture, and I'm hoping that some of the other steps I am just starting on will help it along. Still, I've had a very positive experience so far. No clue where to buy it online, I found a doc (private unfortunately), that will prescribe it for me.

google.co.uk/url?sa=t&rct=j...

It can't hurt to ask for a prescription. (And yes, I understand the likelihood of a doc prescribing it, but there's always a tiny, tiny chance they will, especially if it's presented as an alternative to increasing thyroid meds, and a low side effect option.)

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Thanks EIRR, you're right, it won't hurt to ask :)

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There's a Facebook group called LDN Research Group which is very helpful and informative. It's run by the charity set up by the scientist who discovered low dose naltrexone who has since died and his wife is the CEO. They also have a website which gives information about how to obtain LDN in the U.K. My GP refused to prescribe it for me which didn't come as much of a surprise since he won't prescribe T3 or NDT either - has no problem dishing out antidepressants, statins, anti inflammatories etc though. Anyway you could join the Facebook group and you'll find lots of info on there.

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I will join the group, thanks. Yes, mine are very kin on levothyroxine and antidepressants but not ndt or vitamin level testing... Thank you for your help

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I have been on LDN for 6 months now, my GP prescribed it in Cape Town and we can buy it quite easily here. I have chronic Hashimotos for 20 years, i started LDN in January on 1.5 mg and I am now on 4 mg , the main thing i noticed is i sleep very deeply and wake feeling really good. My energy levels are far better i can get through a full day without crashing and i hardly even have any of the thyroid symptoms i had. I discontinued taking eltroxin as of April.

I have had only 1 hashimotos episode in 6 months and that was 3 weeks after first starting LDN on 1.5mg (i usually have an attack every 6 weeks and have chronic fatigue in between)

so far i have not found any bad side effects, of LDN and my immunity has improved also, the family all have had flu/colds as its winter here, unbelievably , i have not caught their colds this winter.

LDN has changed my life.

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Can anyone send me a pm to help me find LDN or naltrexone that I can convert myself. my GP does not know much about it. looking to help my hashimotos thyroid

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