Is Anyone From The UK Taking LDN (low dose naltrexone) for Hashi's / Hypothyroidism?

I've read that LDN can lower antibodies and generally help with autoimmune related hypothyroidism.

Does any UK based person on this forum use it with success and can you get it without prescription?

[Redditch]

I haven't and I've just looked all through the previous posts and nobody has any faith that it does anything. Gluten, low Vitamin D and Low Vitamin B12 seem to affect my antibodies I think there's quite a lot of environmental factors, like shampoo, soap, washing powder. Sorry to not tell you it's super and it will fix everything but it probably won't and the side affects can be unpleasant.

[Hidden in reply to Redditch]

Thanks for your thoughts. I have only just came across it in my reading and became intrigued.

[AnnaSo]

You can search previous posts on the forum. Many report success but it should be used with caution and only when every other protocol fails (eliminating gluten, dairy, soy, etc).

[Hidden in reply to AnnaSo]

Thanks, I do that bar dairy. I am on the whole lactose free though.

[AnnaSo in reply to Hidden]

Right, it’s actually casein not lactose that affects people inflammation-wise so lactose free wouldn’t not help if you had issue with casein.

I know it’s not easy, I managed to drop my TG antibodies from 1300 to 200, and TP from 250 to 60 in 3 months and they have stayed exactly there since (I recheck every month). Lowering didn’t make me feel any better though.

[Hidden in reply to AnnaSo]

Can u get casein free dairy milk?

[auraelya in reply to AnnaSo]

What other benefits of LDN did you have, except lowering the antibodies? as they say here, on this site, lowering the antibodies doesn't mean a big thing, so to say....

I have much more antibodies than you do, I'd also like to try it, I don't know what to do....

[rubyru]

Hi MapleMoose

I take LDN for a range of autoimmune diseases including hashis and lupus. I have taken it for 4 months but also changed to NDT from levithyrixne (synthetic)at the same time. I’m starting to feel really good but haven’t checked antibodies yet. I was prescribed by an endo but I think the same chemist in Scotland does have arrangements whereby they can prescribe. I’m not 100% sure.

LDN is definitely worth a go - on starting it can make sleep a bit peculiar for s few days but other than that - no problems. If you can’t find the chemist PM me

Good luck

[Hidden in reply to rubyru]

Thanks I will. My husband has lupus interestingly. Can it be obtained without a prescription? My GP won't consider prescribing that and I am now self medicating with NDT.

[rubyru in reply to Hidden]

The chemist in Scotland that supplies LDN used to have a service where you had a phone consultation with a doctor for £35 and they gave the prescription - roughly £20 a month. They need proof of the disease you are treating - copy of consultants letter, copy of prescription etc - all can be scanned.

Pm me for name of pharmacy as I can’t put on here - also, not sure if they still provide this service. Good luck and I personally feel like it’s worth a shot and I researched it thoroughly before taking it.

[MissFG]

I’ve considered it do researched it’s benefits etc. The USA seem to use this to treat autoimmune diseases with some success but we’re all different.

You can get it online on prescription and it’s not costly.

If you do try it start on a low dose and slowly increase.

This info may help

ldnresearchtrust.org/what-i...

[Hidden in reply to MissFG]

Many thanks, I need to obtain it without a prescription though.

[Jjgregory]

Low dose naltrexone WORKS. My doc put me on it and i didnt exactly believe in it so i took it sometimes in smaller doses than he prescribed. At my next hashimotes antibodies blood test i noticed my antibodies were a little lower than they were before--like from hundreds down to double digits. So i started taking it nightly and raised my dose up toward the 4.5 mg he had recomended. Within 6 months my antibodies were down to single digits! I feel better and have better thyroid health. I have a local doc who prescribes it but if you are in uk and cannot find such a doc, consider consulting with the hope for hashimotoes doctor dr. Haskell. He will work with a client via phone, prescribe meds and order tests from private labs. While it will not be care under nhs it will be specific care for your hashimotoes with the sole goal of getting you your life back. Dr. Haskell gave me many things to do on my own that changed my health around. I was sinking and very discourged with hashimotoes, pufilfiness, itching, burning mouth, adrenal collaspe and sex hormone issues that went with it. It was a tangle i did not know how to undo or even where to start. Dr. H took a 12 page health history on me and pointed out what he believed was the root cause of my hashimotoes. He told me to get certain treatments in my area and i followed his guidence. Taking ldn and a few things recomended by dr. H i feel took my hashi antibodies down to less than 10.

Www.lowdosenaltrexone.org will help with research on this inexpensive and amazing medication. In a nutshell it works in a immunology way...(what this years noble peace prize was awarded to) it lowers antibodies by raising endorphins.

[Hidden in reply to Jjgregory]

Many thanks for sharing your thoughts. I don't get me antibodies checked regularly as I can't afford to do it all the time and my GP won't do it as they say its unecessary. I do feel better on NDT but I still get weiry and achey especially in my armpits a few times a week.

[jjf255]

I am in the US so I can't really address your needs in the UK, but...my husband has been on LDN 3.5mg for about a year to try to reduce his thyroid antibodies. He also takes NDT nathurethroid. When his last labs were drawn about 6 months ago, his antibodies had finally stopped going up. He just had new labs yesterday for his appointment with his primary care Dr. on Oct. 15th. I will try to give an update after that appointment. He feels it has been helping. His Dr. said its a drug that does take some time to work. We purchase it through a local compounding pharmacy with a prescription. Even though it cost about $50.00 per month ( would be more but we have a prescription discount program through this pharmacy) I feel more comfortable getting it this way rather then online.

[Hidden in reply to jjf255]

Thanks! I am struggling to pay for my meds and supplements with all my other commitments so extra costs are a burden so I need things genuine but as cheap as possible. Meds are easier to get in the U.S, I've lived there for a while and was diagnosed there. Britain does not take thyroid disorders seriously enough sadly, it's a monetry burden to the NHS and too many people have it. Maybe investing in research and better Rx practices may help lower their burden, but heh ho, I'm ranting and you don't want to hear problems from across the pond, sorry

[jjf255 in reply to Hidden]

I think thyroid disease is dismissed in many countries. I had to do a lot of research in our area to find a Dr. for my husband, who would prescribe NDT. My husband had become quite ill taking levothyroxine because he doesn't convert T4 to T3. After doing research again I asked this dr. if he'd also prescribe LDN and he agreed to write the needed script. He said his practice had used it for patients with fibromyalgia but he had only just started learning about its other uses. Even though this dr. is open to these things...I am the one who has to do the research. What is going on with doctors??

Even though my husband and I are both old enough to qualify for medicare...it doesn't pay for all meds...NDT and LDN are 2 that medicare won't cover. My husband still has his own business so we cut back in other areas so we can pay for these meds. It really isn't fair. We just found out yesterday after filling his Naturethroid script that the pharmacy is having trouble getting certain strengths. Once again my research and calling other pharmacies begins.

[Hidden in reply to jjf255]

Best of luck with that! Who'd think we live in the Western World and supposedly civilized healthcare. I hear that Thailand has really good modern healthcare, hence I buy my NDT from there and it's way cheaper than NDT from Western Countries. Our thyroid journey is definately a roller coaster ride, well for me anyway :/

[jjf255 in reply to Hidden]

MapleMoose, I also buy my NDT from Thailand...Thyroid S. My Dr. will only prescribe levo and I guess I could switch to my husband's dr. but at this point its easier to just buy from Thailand. My dr. doesn't like it but she knows I'm not taking levo/Synthroid. Thyroid S has worked for me. Even that transaction has gotten harder since credit cards can't be used for this purchase. I have at least a years supply but I am already concerned about the problems I may have making the next purchase. You may wonder why my husband isn't taking Thyroid S...He just isn't very in touch with his body ...haha...and I think you need some of that to titrate to the correct dose. He always just says he's fine. He needs the regular bloodwork and dr. visits to make sure he's on the correct dose.

I agree with you..civilized healthcare isn't that good. Don't get me started on US government and our healthcare and Big Pharma.

[Hidden in reply to jjf255]

Ha Ha! Your comments amused me... I think it's the same old story for all of us dealing with all the healthcare constraints. Even when it's so frustrating, I think a sense of humour acts as buffer to going down the road of insanity having to deal with the madness and mayhem in the world of thyroid care. The Drs would already have us as hyperchondriacs and mentally unstable after all.

[redmoon in reply to jjf255]

hi, can you pm with place in Thailand you use. I would be afraid of finding someone who has no previous users to recommend. thanks

[jjf255 in reply to redmoon]

They are no longer in business

[Jjgregory in reply to jjf255]

I have caresource which is medicare and they pay for both ldn and ndt. I would switch your medicare to caresource and get your meds covered. Caresource pays for all bloodwork and all medications: i get compounded t3. Ldn and bio identicals from compounded pharmany. I get tirosint t4 from cvs. All are covered.

[jjf255 in reply to Jjgregory]

Wow...Thank you Jjgregory. I will definitely look at Caresource. That would save us a lot of $ every month

[Jjgregory in reply to jjf255]

Skips compounded pharmacy in boca raton can fill all your scripts and send monthly. Many people all over us use skips for their reliability

[ElRR]

I’m using it with success, though it’s a medicine that is far from a 100% success rate. It has very low known side effects, (I did experience some weird dreams for a few nights as someone mentioned earlier) and is not pricey, so it could be worthwhile. This is a good article about it, and it’s success rates.

thyroidpharmacist.com/artic...

[Hidden in reply to ElRR]

Thanks for hearing your success story.

[Britomartis29]

I’ve just started it, 2.5 mg, for my lupus & hashi-hypo. I’ve recently moved from UK to USA and the rheumatologist I see for lupus prescribed it. Last night, I had an odd waking at 3:30 am, and no change yet on day 1, but they say it takes a week, two weeks, or longer to help. (Wondering how long before I notice a difference.) The pharmacist said to watch for hyPER symptoms and reduce my Levo and T3 accordingly, gradually (she explained that: from 100 to 75 to 50 levo and from 25 to 20 to 15 T3, checking with doctor and monitoring with labs.) but otherwise to stay with other meds. Keep us posted!

[Hidden in reply to Britomartis29]

Thanks! You'll most likely get better care now you live in the States unless you're living in some hill billy town, I did when I lived there.

[Vxxxx]

I think ldn trust Google it can sort an online consultation and they can sort meds from Scottish pharmacy. I get mine online tpauk forum helped me find a supplier. It's helping me.

[Hidden]

Thanks for the info, appreciate it.

[Julie8787]

This article has a lot of information about it: medium.com/@hablerannie/hop...

i heard that <source redacted> has it available, no need for a prescription

[helvella Administrator Thyroid UK in reply to Julie8787]

Our guidelines do not allow identification of sources of prescription-only medicines. I have, therefore, removed the site name.

[Hidden in reply to Julie8787]

Thank you 😊