Low Dose Naltrexone

[Defeatedbymythyroid]

Hi I’ve just started taking Low dose naltrexone(LDN) and was wondering if anyone else had tried it? I’m hoping it reduces my antibodies and the constant aches/ pain. However I feel like I’m pinning a lot on it!! ( just for background I developed a goitre in 2021, biopsy came back inconclusive so I had a partial thyroidectomy 2/3rds removed, started levothyroxine but despite my dose increasing my antibodies are still off the chart and my symptoms haven’t improved)

[Sparklingsunshine]

I take it for Fibro not thyroid, you might not feel any benefit until you reach a theraputic dose, usually 4.5ml daily. And its not your antibodies making you feel unwell, more likely low or fluctuating thyroid levels. Along with the LDN make sure your nutrient levels are optimal as low iron, vitamin D and B12 can cause muscle and joint pain.

[SlowDragon Administrator]

Welcome to the forum

Yes lots of members take, or have tried LDN

Other posts that mention LDN

healthunlocked.com/search/p...

Are your thyroid levels optimal

How much levothyroxine are you taking

Do you always get same brand levothyroxine at each prescription

What are your most recent thyroid and vitamin results

As you have autoimmune thyroid disease you should have coeliac blood test

Important to test and maintain optimal vitamin D, folate, ferritin and B12

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[Defeatedbymythyroid in reply to SlowDragon]

Hi

Thanks for the link that was really helpful. Fingers crossed I will get some benefits.

I take 175mcg daily. I take Vit D, Selenium , folic acid, iron, vitamin B12, omega 3, chromium,vitamin C daily .

My recent blood results were FT3 and FT4 in range T4 lower end. TSH 6.6

It’s been three years since my operation and I honestly didn’t think things would still be this much of a struggle!

[SlowDragon Administrator in reply to Defeatedbymythyroid]

My recent blood results were FT3 and FT4 in range T4 lower end. TSH 6.6

That’s a relatively high dose levothyroxine and unusual to have a high TSH

Can you add actual Ft4 and Ft3 results and ranges

Was test done early morning and last dose levothyroxine 24 hours before test

Which brand on levothyroxine

Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours, no iron, calcium, magnesium or vitamin D within 4 hours

Have you been tested for H Pylori, SIBO and coeliac

[Defeatedbymythyroid in reply to SlowDragon]

Yes my test was done in the morning and yes I did not have my dose for 24 hours it was actually longer than that as I take my dose at night.

And yes I know all about the interactions and I don’t take them together, I take my supplements in the morning and my thyroxine at night.

I’m happy to put up my results I just don’t see how that will help me with my original question.

In terms of brands I have never had an issue with them for thyroxine. But before this test I was on 150 my brands of 100mcg and 50mcg were the same and consistent. Since the test my dose has increased to 175mcg the 25mcg is a different brand to the other two but like I say, I personally haven’t experienced any problems with different brands.

With my antibodies so high it will be causing inflammation and attacking my thyroid cells. The result of this is probably contributing to my symptoms. Hence why I was desperate to give LDN a go.

In my profession I’m so used to relying on NICE guidelines, research papers and evidence. It’s completely unnatural for me to try something that has no medical evidence for this condition. That’s why I through I ask if anyone has personal experience of using it.

Thanks to everyone who has responded! I will let you know how I get on.

[SlowDragon Administrator in reply to Defeatedbymythyroid]

So which brand is 25mcg

Teva brand can be an issue for many people

Bloods need retesting 8 weeks after increasing to 175mcg

High TG antibodies tend to reduce as TSH drops below 1

Many Hashimoto’s patients need to be on high enough dose to keep TSH under one, or even below range

many, many members see inflammation reduction on dairy and/or gluten free diet

Have you tried gluten free/dairy free

Last dose levothyroxine should be 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[csavery8753 in reply to Defeatedbymythyroid]

Do you have hashimotos?

Have you ever tried supplements called Adrenavive for your fatigued adrenals?

Also, have you explored seeing a Functional medicine specialist or are you just reliant in taking Levo and the supplements you mention?

More than often it’s about ‘finding root cause’

Are you at menopausal age, because optimising your hormones is a must along with a thyroid friendly diet.

Keeping your blood sugar levels balanced will help with symptoms of crashing.

I notice that someone mentioned about NDT is made from pigs glands, they don’t slaughter them for us thyroid sufferers. Perhaps read up on it, as this changed my life!

where abouts do you live? Are you reliant on the nhs getting you well, because quite frankly you will be wasting your time . Your life is precious 👍

[greygoose]

started levothyroxine but despite my dose increasing my antibodies are still off the chart and my symptoms haven’t improved)

There's no reason why taking levo at any dose would reduce antibodies. And antibodies are not responsible for symptoms.

Antibodies are the result of having Hashi's, not the cause. So even if you were able to get rid of them completely you would still have Hashi's, and the disease would still be destroying your thyroid and causing you to be hypo, and the low thyroid hormone levels would continue to cause symptoms.

Levo doesn't cure anything. It is thyroid hormone replacement (T4) replacing the hormone your thyroid can no-longer make enough of to keep you well.

T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. If your dose of levo is continually increased with no relief from symptoms, it sounds as if you could be a poor converter and your FT3 is low. Have you ever had your FT4 and FT3 tested at the same time?

[Defeatedbymythyroid in reply to greygoose]

I disagree about the antibodies not being responsible for symptoms. I came asking if anyone had given LDN . Picking away at my statement isn’t helpful is it?

Yes I have had FT4 and FT3 tested at the same time. I was in range for both but lower end for FT4.

So have you tried LDN or do you have any opinions on that?

[greygoose in reply to Defeatedbymythyroid]

Sorry I spoke. I shan't say anymore.

[Litatamon in reply to greygoose]

Informative post greygoose, thank you for it.

[greygoose in reply to Litatamon]

You're welcome.

[Ajva]

I haven’t tried LDN yet but it is on my list. I am going to be honest have you had t3 checked or are you on t3 meds? That is what made a difference to me. I have heard LDN is great for antibodies and mine are extremely high!

Grey goose does have some good points with the vit levels etc and t3 treatment. Levo alone generally makes most people not feel great and if you can’t convert t4 to t3 then you won’t get much relief from levo. My t3 wasn’t that low but when I added it in, felt a massive difference.

I am only giving you my experience over the years so I hope it helps

[Auto1 in reply to Ajva]

Hi Ajva can you say how you get your t3, have you managed to get it prescribed by your GP? I have had hashimotos for 20 years and have tried to get t3 prescribed but have failed, admittedly it’s probably 7 years since I tried to broach the subject with a GP. Since Covid it’s a miracle if you can get through to the health centre never mind an appointment.

[Sparklingsunshine in reply to Auto1]

You can only get T3 prescribed on the NHS via an Endo, who works for NHS, GP cannot initiate T3. Which is why many people self source. You would need to get a referral to an NHS Endo who may or quite likely may not, agree to prescribe.

Personally my CCG do prescribe T3 and have one of the higher rates of prescribing so I could have gone down that route but frankly, the delays, the uncertainty of being prescribed it, hassles with GP's not wanting to pay for it, dealing with TSH obsessed doctors and them rationing out doses very begrudgingly, meant I'd rather get my own and dose myself.

There are plenty of very experienced members who already do this and will guide you through it.

[csavery8753]

Hi

Yes, I am taking LDN and have found it extremely positive once up to the optimal dose 4.5. You might also want to try changing to NDT.

[Jgoodwin977 in reply to csavery8753]

what’s NDT?

[Sparklingsunshine in reply to Jgoodwin977]

Natural Dessicated Thyroid,made from pig thyroid, its fallen out of favour by the medical establishment since Levo was invented but it used to be the treatment for Hypo. A lot of people prefer it to Levo as it contains both T4 and T3.

[Jgoodwin977 in reply to Sparklingsunshine]

Oh, I’m an animal advocate so against things like that, but thanks for clarifying

[Mixteca in reply to csavery8753]

Did you titrate up slowly to reach that dose csavery8753 ? I know prescribers vary starting doses and frequency of titration.

[Jgoodwin977]

really want to try this, but where do you get yours from? I heard you could only get it in Scotland and that England had banned it or something, so it’s really hard to get? Selenium, black seed oil and a vegan diet got my antibodies down from 475 to 40 if that helps

[Sparklingsunshine in reply to Jgoodwin977]

I get mine from Roseway Labs, there is also Dicksons chemist in Glasgow. The LDN trust is a good site for info, latest research and how to source.

[Jgoodwin977 in reply to Sparklingsunshine]

Thank you 🙏

[Mixteca in reply to Jgoodwin977]

I posted a link to the LDN trust's website below.

[therese3009]

Yes I take LDN for over 1.75years, 2mg. I have Fibromyalgia & ME & thyroid is underactive (no other issues with thyroid). You just need to continue taking Ldn without expecting anything from it - until something Does happen, - for me, it took just over 1 year for progress. My body inflammation improved, and energy so in return the Fibro pain improved greatly. Remember you can't take opoids for 6 hours after taking your dose. It's well worth starting and waiting for an improvement eventually. Good luck.

[Mixteca in reply to therese3009]

I understood that you should avoid taking opioids while on LDN 🤔

[Mixteca]

Lots of info here:

ldnresearchtrust.org/what-i...