low dose naltrexone trial?

[GreenTealSeal_]

hi all,

I have an appointment with Roseway pharmacy next week and was thinking in addition to asking to trial NDT, I could also ask to try LDN?

I have some autoimmune weirdness going on for a long time and GP just wants to bin me off with fibromyalgia which I don’t accept or feel is accurate.

Can I just ask to trial LDN? My justification is that I’d like to see if it will help my inflammatory PCOS symptoms and histamine issues? Do I need to prove I need it somehow? I have a postive ANA too and defo feel like there’s some immune system issues going on…but nhs won’t listen/don’t care now they feel they’ve ruled out lupus..

Heck can I just buy it somewhere to trial it myself?

I’m still not convinced thyroid meds are the correct path for me but willing to give NDT a go but feeling more hopeful about LDN given I feel it’s histamine that’s causing my thyroid problems in the first place and any kind of levo or lio sends my histamine issues and allergy type symptoms through the roof.

[Bertwills]

I haven’t used Roseway’s for LDN just thyroid hormones. I use clinic158.com. You can self refer. You’ll need blood test results to show them. You make an appointment with a prescriber. I’ve found it helpful in the past though its effect can wain. Some people cycle on & off. Takes 3 months to reach full dose but it can mean you end up taking less T4 & T3.

[GreenTealSeal_ in reply to Bertwills]

Interesting thankyou! Can I ask what bloods tests you need to provide?

I obvs have the ones that confirm thyroid issues, ANA etc

[Bertwills in reply to GreenTealSeal_]

I had Medichecks more comprehensive test results than just the thyroid hormone test but I think they’re happy with TSH, T4, T3 & antibodies. Hope it helps you.

[GreenTealSeal_ in reply to Bertwills]

Thanks! I suppose the only hurdle for me will be that I don’t have Hashis but hopefully that’s ok!

[Sparklingsunshine in reply to GreenTealSeal_]

I use Roseway for LDN, I use it for Fibro. They never asked for blood test results as there isnt one for Fibro but they did ask for confirmation of diagnosis.

So if you have any letter or medical document that mentions a chronic pain condition that should suffice. I think they need blood tests for any thyroid meds you want them to prescribe.

[ainslie in reply to Sparklingsunshine]

Can I ask you what are Roseway charges for LDN and also how does it help you with fibromyalgia, my partner is considering starting it for her fibromyalgia

[Sparklingsunshine in reply to ainslie]

You pay for the initial consultation, which also includes the private prescription. I'm not sure now much that is now as I only now pay yearly for a review, which is cheaper. With LDN you normally start on liquid which you titrate up slowly over several months. The medication is extra.

Once I reached the theraputic dose of 4.5ml I switched over to LDN capsules which are cheaper. I pay £75 for 100 capsules, so just over 3 months worth.

I've tried all the usual Fibro NHS treatments. And didnt get on with any of them. LDN helps with pain, mood and general wellbeing. But it is very individual and LDN doesnt help everyone. So just bear that in mind.

[ainslie in reply to Sparklingsunshine]

Thank you 👍

[GreenTealSeal_ in reply to Sparklingsunshine]

Ace thanks! Was gonna email them some bloods and ask ahead!

I asked nhs to remove Fibro/CFS from my record as they weren’t offering to help and o don’t think I have it. But I defo have some immune issues and can provide postive ANA etc. also heard naltrexone can be good for PCOS and can defo provide tests for that!

So you take anything else for Fibro? I hear amitryptoline is often prescribed?

I don’t really want to take antidepressants as I don’t feel that’s my issue

[Sparklingsunshine in reply to GreenTealSeal_]

I had a positive ANA test a few years ago when I had investigations for Sjogrens, the problem with ANA tests is they obviously arent s particularly specific and my GP said around 15% of people with a positive ANA result have no actual disease and are healthy.

I dont take anything for Fibro. I have EDS which mimics Fibro symptoms almost exactly. I'm guessing its the EDS causing my symptoms. I dont think I have Fibro as well.

I've tried everything on the NHS, Amytriptyline, Duloxetine, Pregablin, Gabapentin. Unfortunately the evidence for antidepressants helping chronic pain is very poor. Only Duloxetine has any evidence showing it CAN help. There's not anything in the way of anything new. And a lot of Fibro meds can have very unpleasant side effects.

If you can manage without then you are probably better off.

[Jgoodwin977 in reply to Sparklingsunshine]

so is it not the EDS causing the ANA then?

[Sparklingsunshine in reply to Jgoodwin977]

Ehlers Danlos isnt autoimmune, its a genetic connective tissue condition.

[GreenTealSeal_ in reply to Sparklingsunshine]

Ah thanks! Yeah just seems like antidepressants are the perfect fob off really!

I have been told the same about ANA however mine is consistently positive for the last 6 years and it definitely feels like there’s a problem that related to my immune system etc it’s been disregarded by nhs but I feel

Postive anais a big clue for me!

[Sparklingsunshine in reply to GreenTealSeal_]

In which case LDN might help as it does regulate the immune system.

[GreenTealSeal_ in reply to Sparklingsunshine]

Fingers crossed I’ve actually also noticed I feel a lot better when I have been prescribed steroids in the past…

[Sparklingsunshine in reply to GreenTealSeal_]

Yes I have had the same reaction. However there has been new research that seems to indicate Fibro could actually be autoimmune in origin. Not actually over sensitisation of the nervous system. Which seems to be a symptom, not a cause.

[Sharoosz in reply to Sparklingsunshine]

Definitely better to manage without antidepressants. As you say, few help. Most harm in the long run. Exercise, sunshine and Vitamin D will do more for depression than most drugs.

[GreenTealSeal_ in reply to Sharoosz]

Not if it’s hormonal sadly in my experience. But you’re defo right in that’s it’s important to address the root cause which antidepressants certainly don’t

[Bertwills]

It’s the full strength naltroxene that is used to treat alcoholics at doses of 50 mcg. The full dose of Low dose naltrexone is usually 4.50mcg. There can be side effects though. My stomach can’t tolerate it so have sublingual drops.

[Bertwills]

I find it helpful. Better sleep, more stamina

[Jax49]

I’ve been on LDN for about 15 months. I got it from Clinic158 & Dicksons Pharmacy in Glasgow through a phone consultation.

I started on a very low dose & built up slowly to max dose of 4.5mcg. I’ve had no side effects but did do initial stages very slowly. I can’t say I’ve noticed feeling any different except my inflammation markers from Medichecks blood trst, which were very high, dropped right down. (Sorry but haven’t got figures to hand but the drop was quite remarkable).

I haven’t noticed LDN having any effect on my Armour dose.

Recently I broke my arm. I’ve hardly needed any painkillers. I’m told this was due to the use of LDN. (I’m 75yrs old!)

[GreenTealSeal_ in reply to Jax49]

Wow great it’s worked so well for you!

Are you hashis?

My inflammation markers are up and down like a yo-yo and probably made worse that I’m struggled to take any thyroid med

I’m hopeful LDN will help!

[Sparklingsunshine]

Only full strength naltrexone is used for addicts, 50mcg. LDN rarely exceeeds 4.5ml a day and the side effects are minimal. I had a few weeks of vivid dreams then that disappeared. I've used both liquid and now capsules with no problems and I'm notoriously med sensitive.

[Maxmog]

HiI have Hashimotos and self referred to Clinic 158 (through Dicksons Pharmacy). Just uploaded my bloods and a copy of my thyroid ultrascan. Taking it has stopped the up and down symptoms affecting mood and energy. I've been on ir for 3 years. My antibodies have not reduced on my bloods, but I feel loads better. I'm on the 4.5mg dose. No side effects, only dream every night (hardly ever dreamt before). Really cheap at £28 per month for sublingual drops. I havent changed my ndt dose.

[GreenTealSeal_ in reply to Maxmog]

Ace that’s great to hear, thanks!

Only problem is I’m not hashis so I wonder if they will still help

[Bertwills in reply to GreenTealSeal_]

Probably but no guarantee. Worth a try though.

[GreenTealSeal_]

I was prescribed levothyroxine when o was subclincal (TSH under 10) v easily but my problem is it makes everything worse and sends my histamine levels through the roof.

I started Vencamil this morning and it’s already causing me some histamine issues and hurting my stomach but gonna stick with it for a bit.

Tbh I’d pay a lot of money for NDT if it actually helped and didn’t cause the same histamine issues

[Tootsjwu29]

High progesterone really helped my inflammation. Then adding in T3 took it to the next level.

[BadHare]

I had to increase NDT/glandular supplement after starting LDN. The only difference the latter made was some of my post-covid smell & taste returned. I couldn’t get above 1.5mg without my feet & legs feeling as though my blood had turned to ice. The prescribing pharmacy wasn’t helpful when I asked for advice re this issue as the promised contact from the pharmacist never happened. The LDN forum on here just seems to churn out YouTube videos rather than being a source of advice like this one. I’ve just cancelled repeats after a year as the company kept charging me for repeats early without notice & ignoring emails & complaints. Like anything, choose who you buy from!