My GP has suggested LDN would benefit me. Will ... - Thyroid UK

Thyroid UK
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My GP has suggested LDN would benefit me. Will she be able to prescribe though?

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Is LDN now licensed in the UK? My GP is thinking of putting in a case for me to the other partners. Is it really expensive? Will it help my pain and high antibodies?

33 Replies
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it is very very cheap if you dilute it yourself and cheap even if you buy it ready diluted. There is one pharmacy in the UK that compounds it as far as I know. I am very impressed with your GP, mine had never heard of it. your GP has to prescribe it on a named patient basis, but should be able to do it. If he/she cant do it you should be able to buy naltrexone yourself and take with her supervision. It is a very cheap drug and should be used in general practice but is not prescribed as will not make money for any drug company. That is the whole reason to why it is not used.

ldnresearchtrust.org/

lowdosenaltrexone.org/

roslin

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in reply to roslin

Hi roslin, I was ready to leave the practice, but thank goodness this doctor joined, and she's really good.

I have awful body pain, my ESR has gone up to 40 and my antibodies have shot up in the last year. Also now have been diagnosed with pernicious anaemia. I was amazed when I saw her this evening that she had researched this for me. I'll see if I get it prescribed, if not i'll fund it.

Thanks so much for the info!

PinkNinja
PinkNinja
in reply to Hidden

I have a friend in the USA that takes it and it has done wonders for her RA.

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in reply to PinkNinja

That's brilliant Carolyn, it's such a painful condition.

PinkNinja
PinkNinja
in reply to Hidden

I hope it helps you too :)

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in reply to PinkNinja

Thank you Carolyn! X

helvella
helvellaAdministrator

There are actually few things that absolutely cannot be prescribed - provided the prescriber is willing to take responsibility. And the appropriate funding body allows it. Many people get unlicensed medicines - though they are (overall) much less commonly prescribed than licensed products.

In this case, it appears that Naltrexone itself is licensed - but not for this purpose. That is often less controversial and difficult than getting a wholly unlicensed product. For its normal use, the costs to the NHS are something like this:

Naltrexone (Non-proprietary) Prescription only medicine

Tablets, naltrexone hydrochloride 50 mg, net price 28-tab pack = £22.34

Brands include Adepend®, Opizone®

medicinescomplete.com/mc/bn...

I am not acquainted with the doses used in LDN regimes, costs, etc.

Rod

roslin
roslin
in reply to helvella

I remember working in a hospital in England in the eighties where a teenager was prescribed Guinness, for vit B i suppose. Those were the days.

Roslin

helvella
helvellaAdministrator
in reply to roslin

:-)

They certainly used to give Guinness out at some blood donation sessions. Afterwards. (But not in my usual part of the world.)

The things that CANNOT be prescribed in the NHS are identified in Part XVIIIA here:

ppa.org.uk/edt/December_201...

Rod

PinkNinja
PinkNinja
in reply to roslin

My mum's aunt was prescribed stout for anaemia, I think. It was considered a tonic back in the day. Probably because of the b vitamins, as you say :)

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HiddenAdministrator
in reply to PinkNinja

and also after having a baby - I remember several new mums on the ward being given stout by their hubbies - I had chocolates but hubby scoffed the lot as he hadn't eaten all day! J x

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in reply to Hidden

Sorry spareribs, I didn't see your post! I was just remembering the stout, very relaxing too!

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HiddenAdministrator
in reply to Hidden

that's OK - I'm glad I wasn't making it up! x

j_bee
j_bee
in reply to Hidden

You certainly were not making it up Spareribs. My friend's husband brought her some Guinness in and I had some. When the Nursery Nurse saw it she said it woulf do our milk good! Janet.

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in reply to Hidden

:-) x

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in reply to PinkNinja

Lol, I love dark beer, but only can have a little. I remember swigging it when breastfeeding lol!

Years ago as a student working as a ward orderly in a radiotherapy ward I had the greatest of difficulty persuading one of the ladies on the ward that I definitely was not going to drink her stout for her - even if she did keep a lookout to make sure that no one was coming. I can only assume she didn't like it. I think she had been given it to 'build her up'

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in reply to Fruitandnutcase

Hi fruitandnutcase, well it does stick to your ribs! I don't see a problem with it, maybe not pc enough these days!

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in reply to roslin

Hi roslin, Beer is high in folates, but not good for B12. I was eating a lot of Marmite, but then got worried by the amount of salt!

I remember some old school midwives recommending stout if you breast fed, lol!

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in reply to helvella

That's good news Rod that it's at least licensed. Hopefully it won't be too much of a battle! It's not as costly as I thought, but maybe it is by the NHS's standards. I'm funding so much I could get on prescription, I hope I don't have to pull that one out of the bag.

I read the doses earlier, but now can't remember, they did seem very low though.

Thanks for replying!

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HiddenAdministrator
in reply to Hidden

perhaps MaryF can give you some info, also I remember Dr Chris talking about LDN.. somewhere..

thyroiduk.org.uk/tuk/About_...

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in reply to Hidden

Thanks spareribs, i'll try and track that down, and also have a chat with Mary F! X

I don't know anything about LDN but selenium lowers high antibodies (I've also gone gluten free) and vitamin D resolved my pain. (High dose as I had deficiency)

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in reply to sewfossy

Hi sewfossy, i've been taking selenium for nearly two years, I don't think I was taking enough though and doubled it. Also 1,000 a day vit d3, and although i'm glad i've upped my store, I can honestly say it's done nothing for my pain. Haven't felt much improvement with thyroid meds and i'm taking a good dose. I still have non pitting oedema on both ankles, low temps etc. I think my cortisol is causing a lot of problems plus of course pernicious anaemia. Very happy to try LDN if I can get it prescribed.

Thanks for your reply. X

I have tried LDN, although only very briefly because it played havoc with my stomach. However, I have since found out that a sublingual form is available, which bypasses the liver and goes straight into the blood stream. But.......this would be at a cost of £1 per dose, plus the prescription charges. There are days when I feel quite poisonous towards the NHS. Although my trial of this drug was extremely brief; I had the best sleep I had for years, my mood lifted and I was able to return to writing for that brief period. I think it was suggested I take an acid suppressant, but that is not going to happen, it took years to get away from that particular drug. If all else fails, I will sell the family silver!!!!

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in reply to sandysnow

Hi sandysnow, I did buy LDN and I gave it a go,but to be honest I felt terrible. I only took it for a month, and maybe it's a case of feeling worse before you get better? I have low cortisol and I felt it made this much worse because I felt like a jibbering wreck. I was a lot more tired, and I did get stomach cramps when first trying it, that actually woke me in the night they were so bad.

I have to take cimetidine, which seems to interact with a lot of drugs, maybe this is what is happening.

Why would you have to take an acid lowering drug? Cimetidine does that and now I'm very anaemic. I've been on it for a bladder disease for 11 years now, I would say to people stay away from them if at all possible.

My GP eventually told me it would cost well over £200 a month, and I wasn't allowed to have the LDN.

I just get so fed up with the NHS. I ship my armour in at a heavy cost and then have to pay duty. REALLY!!!!! However, if I get really fed up with trying every possible solution on the planet, I will buy this drug in for myself. It is said to halt further damage from any other possible autoimmune diseases that want to join in. I think it has a lot to do with oestrogen as the flares for this sort of thing, always rear their ugly heads when there is a lot of hormonal fluctuations. Hashimotos is not a thyroid problem exactly, more an autoimmune that kicks the s...t out of the thyroid. Oh joy. Best wishes to you.

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in reply to sandysnow

Hi again sandysnow, I'm in a similar position, I pay for Armour, T3 and wait for it my B12 injections. I can't tolerate the acetic acid in the generic, so I get a prescription as a "private patient" from my GP and 3 months supply was £43 last time, I'm buying needles and syringes too. I know a lot of patients getting Cobalin H b12 on the NHS for free!

Then with my bladder disease I buy dip sticks, and bottled water as the chlorine in tap water kills me. Yes it's b****y expensive being ill! Plus I pay for all my E45 skin stuff grrrrh!

Well a lot of doctors think interstitial cystitis is autoimmune, now hashis and PA, I wonder what is next? I had psoriasis in my armpits for 8 years right out of the blue, that went on thyroid meds. Showing lots of signs of celiac, so dealing with this now.

My health fell apart after a hysterectomy, so definitely a hormone, or lack of big fluctuation. I managed to pick up the bladder disease from a hospital infection after this surgery. Hey ho. No, not a big fan of the NHS that's for sure!

Yes like you fed up of spending a fortune on everything plus supplements I have no idea are working:-(

Take care,

Hugs. X

I think mine works out more expensiver as I have no support from my GP and it comes in from the States and then there is duty to pay. However, I have just found Synthoid S which comes from Thailand and is loads cheaper. It is, apparently, just as good as the old Armour. Will let you know what it is like.

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in reply to sandysnow

Hi Sandysnow, I buy mine off the internet as I'm now treating myself, for the last year. Yes there's nothing worse than spending heaps of money importing these drugs, because your GP won't prescribe, and then the card through the door with the import vat to pay! My armour comes from some Pacific island and T3 from Mexico. A friend on the site told me about Thiroyd. I'm just waiting for that to arrive, half the price I've been paying!

I'm totally straight with my GP that I buy my own drugs, she nearly fell off her chair when I told how much my Mexican T3 was!

My partner was in France recently and he brought back 300 T3 and it cost £18 in total. We are really getting ripped off in the UK.

Let me know how you get on.

Will do. I get so peeeed off with a system that I have paid into all of my life, only to find it is only going to treat in a very selective manner. This 'Gold Standard' is their way of telling you that you are not going to get anything else. However, I do think with the internet and exchange of information, it will be harder and harder for the pharmaceuticals to go on ripping everybody off. As one of my good friends a homeopathic doctor said

'it is not in the drug companies interest to make you better' Aghhhhhhhhhhhhhhhh

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in reply to sandysnow

Totally, it's not in their interest at all for anyone to be "cured" They are just greedy b's who have far too much influence on doctors. Utterly ridiculous that there is only one treatment available. I tried levo for two years. On my first blood test after treatment it was so obvious I wasn't converting. No one picked it up!

Within 3 months on armour all my swelling started to go. I just don't feel better, fighting to stay awake all the time. Body pain has started to improve though. All very slowly. I am also anaemic though, and that's proving to be a battle.

My daughter who also is hypo and has PA just told me her thiroyd has taken a month to come, and I've ordered a week or so back and have 14 3 grain tabs left!

We shouldn't have to go through all this extra stress. I get so mad with it all too!

This will interest all of us with gut problems. " Monsanto-developed corn contains toxins that protect against insects ... designed to protect the plant by rupturing the stomach of any insect that eats it." Not too many guesses as to what it will do to us. Hippocrates said "Let food be thy medicine and medicine be thy food" No wonder we have so many autoimmune problems. Over 70% of our immune is in the gut. We should all be visiting nutritionalists who can best advise us on the correct foods and diets for whatever ails us. However, there are many that are complicit by just wanting to 'take a pill' and eat whatever rubbish they want. Oooooo got to get off the soap box, I am getting dizzy.

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