I’ve been suffering with Hashimotos for 25 years and my symptoms worsened over the last 15 years. I have the usual symptoms including brain fog, insomnia, no energy etc. I tried lots of things like going gluten free and introducing T3, but nothing worked. I have read other people’s success stories and wanted to give others some hope.
My very knowledgeable friend (who has autoimmune diseases) mentioned LDN (low dose nortrexone). I had never heard of it. After much research, I decided to give it a try and got a prescription via a recommended online doctor, after proving I had hashimotos (copy prescription, copy of endos letter). The prescription was posted to a leading LDN compounding pharmacy in Scotland and within a week I had my LDN.
I knew it usually takes days or weeks to work, but In some cases works immediately. I was finally the lucky one! I slept 8 hours the first night and I woke with a completely clear head, I could think straight and was bursting with energy. The first weekend I walked 6.5 miles. Last year I couldn’t walk 1 mile. It’s further than I’ve managed for 8 years. I can finally think straight and I honestly feel like I’ve got my life back. I didn’t realise how dreadful I’ve been feeling all these years.
I’ve only been on it two weeks, but every day has been fantastic, and for the first time in years I feel amazing. I know I need to titrate my dose up to a level that suits me, and at times take a break, but I am really hopeful that I’ve found my ‘cure’.
My GP has been fantastically supportive and is closely monitoring me and my thyroid levels. It is very likely that I’ll have to reduce my dose of levo and T3 and some people even have to stop taking it altogether.
I’m very excited by LDN and wanted to share my story to give other people hope and maybe another thing to try. This is the link to a very informative website.
So glad it is working so well for you. I was almost there a few years ago - but for some reason I pulled back ... I also have Crohns - which is behaving itself at the moment - but if anything else flares I shall be back on the case ! Keep us up to date with your progress ...
You increase in tiny doses, every couple of weeks or some say every 6 weeks. If you tolerate it, you stay put, and you may find other symptoms improve. If you suffer any adverse effects, you reduce back to the previous dose. It’s a bit like thyroid meds, a bit of tweaking. I’m keeping a diary so I can clearly look back on how I’ve felt.
You wrote that LDN is low dose "nortrexone". To clarify, it is "Naltrexone". It is very often wrongly confused with a similar but different drug, "Naloxone", so it is very important to be clear on its correct name. Both drugs are opioid antagonists, with Naloxone used to reverse drug overdose, and Naltrexone licensed to address alcohol and drug abuse, although it is also used in some cancer treatments and by many with MS. Because LDN is an opioid antagonist it's generally advised that you don't take it if you are also medicating with true or synthetic opioids. Not everyone with Hashimoto's necessarily benefits from LDN, some even see their antibodies increasing, whilst others simply feel no benefit. The LDN Book is a useful read.
Sorry for the spelling mistake, I wrote it with a small child and toddler at my feet, so didn’t have chance to proof read.
I’m sure not everyone with hashimotos will benefit, but then not everyone benefits from T3, NDT etc, but still, it helps some people tremendously with their symptoms. There are thousands of people whom it has benefited, and I’d rather focus on being positive and give something a try than think that some people have seen no benefit, so not bother to even try it.
I’m simply letting people know it has turned my life around and I’m hoping it can help someone else out there too.
Better to have tried and lost than never to have tried at all.
CornishChick Its wonderful you have found something that works for you and found the time to share here in order that it may help others. Not always easy when you have small children at your feet to take care of.
Thank you so much Elisabeth for replying. I was considering coming off this forum after the last negative post. I am not here to make money or anything else, merely to pass on my experience in the hope I can help others. I really appreciate your kind and considerate comment. Thank you.
How fantastic, Cornish Chick!! I’ve been taking it at 4.5mls a day for a year now and it’s amazing! Most days, I don’t even remember that I have Hashi’s as, like you, I feel full of zest for life and have lots of energy. I would certainly urge people to give it a go. X
Do you need to prove Hashimotos or can you say Autoimmune Thyroditis.... I know it seems a daft question but I was diagnosed by one GP at my surgery as AT and when I mentioned Hashimotos to another GP she said I don’t have it as don’t have a goitre and just said your Hypothyroid.... 🤔. I’ve read about LDN I think they seem to use it in the States...., good to hear from somebody whose tried it ....!! Really pleased it seems to be working for you
I understand that the term autoimmune thyroiditis is used mainly in England and the term hashimotos is more common in America. So long as you can prove it one way or another with a letter from the gp/endo or a copy of your prescription for levothyroxine or whatever, you should be fine.
I understand that if you have positive antibodies, ie above range, then you are hashimotos/autoimmune thyroiditis. You do not need a goitre to be diagnosed as such. I certainly don’t have one. It may be that you need to educate your gp, they don’t get much training in thyroid to be fair.
Yes it’s very popular in the states and not so in the uk and Europe. My understanding is that because it’s so cheap, the drug companies won’t invest in the necessary studies to comply with gp/nhs requirements. Basically, they can’t make big bucks, so they’re not interested.
Would you be kind enough to message me about it too, please? Would love to know more about it and thanks for sharing your good news, it certainly gives me hope when I read other's success stories.
Thanks for responding. I’m only on the starting dose still of 1ml, and will try to increase by 0.5ml in the next few days and see how I feel.
I had to register with the prescriber, which I think was £15, then the chemist sends a bottle of LDN (I opted for the liquid) which is £20. I understand that this would last a month if you were on the maximum dose of 4.5ml, but a lot of people find their sweet spot at a much lower dose, so the LDN could last several months.
I am so keen to start LDN can you pm me any details of where I can get a script and the pharmacy you used. By the way in one of ur posts u mentioned adrenal fatigue where would I get a test done. Thanks again your posts are inspiring.
My husband is also taking LDN for high thyroid antibodies. He is also taking NDT. He had been on 3.5 mg. LDN for just under a year and at his last test 6 months ago...his antibodies had gone down slightly. We asked his Dr. if he could up the script to 4.5 mg and he did. Sure hoping with my husbands next blood test in a month, his antibodies will have been reduced further. He is getting his LDN from a local compounding pharmacy. It's not covered by insurance and is not cheap, but if it works then it'll be worth it.
I am in the US and since our insurance does not pay for LDN, my husband purchases it with a prescription from a local compounding pharmacy. He pays $50.00 per month. This price is because he pays for a $10.00 annual prescription discount card that this pharmacy offers. Other wise it would cost $75.00 a month. The sad thing is...if my husband was taking full strength Naltroxone because of drug or alcohol addiction, the insurance would pay...but because it is for hoshimotos and at low dose...they won't.
As part of my treatment my Dr. has me taking LDN. It hasn't been the game changer as for you but I did notice some sleep improvement when I started. That better sleep is now normal for me.
I started at 1ml as recommended and am increasing by 0.5ml when I feel ready, anything from 2-6 weeks. If I feel good I’ll keep improving, if I feel anything negative, I’ll go back to my previous dose.
My wife tried this taking only 0.5 dose and she started to have all the side effects you could get from the drug, hearing voices seeing images of people walking by. not sleeping at all.
She stopped taking it. Works for some people but she is too sensitive.
I’m sorry to hear it didn’t work for your wife. How long did she try it for? I understand that you can have some strange side effects initially but then these pass and your symptoms disappear. I’ve had the vivid dreams and they’re still ongoing, no bad symptoms, just feel 100% better and all the hashimotos symptoms have disappeared. It’s been several weeks now and I’m even coping with a dose increase. This drug for me and thousands of others has been amazing.
Thank you so much for such an informative post. I have hashimotos and have all the symptoms that you have. I wonder could u tell me about the dosage of LDN, what did u start on because I definitely want to try it. What type of thyroid meds do you take and will you start lowering the dose yourself?
I started on 1 ml. After 2-3 weeks, I increased to 1.5 ml which I’m still on.
I take levothyroxine and liothyronine.
My Gp did a test at 1 month and is testing every 8-12 weeks thereafter as recommended by the compounding pharmacy.
I haven’t adjusted my thyroid meds as yet, but it is highly likely that they will need reducing down in the future. Some people come off them altogether.
It has been the best thing I’ve tried and I have tried pretty much everything! I literally turned a corner the day I started LDN and feel 100% better after 25 years of hashimotos. I only wish I’d discovered it years ago and not wasted years feeling rough.
I hope you’re able to try it, it has been an absolute miracle for me. Good luck!
Thank you for that I am definitely going to try it. I am exhausted all the time. My doc said my blood results were fine so I asked for a copy. When I checked them it showed well below the range for iron, low on white blood cells and extremely high B12. Would that account for the tiredness?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hashimotos (I think)
New here, hashimotos and neuro symptoms
How to loose weight and bloating with Hashimotos.
Hashimotos unusual symptoms
