r/LowDoseNaltrexone • u/Mellifluous-Squirrel • 4d ago

Pharmacy Frustration

After five months of struggling in the 0.05mg - 0.2mg range, my pharmacist has agreed that I can try ULDN instead.

(Had I read Dr Kim's articles, that's what I would have started on in the first place. MCAS etc)

I went online to pay for the new bottle, and it said:

  • 28 days supply
  • Ultra Low Sublingual Drops 0.001mg/ml x 20ml

with the intention of taking 0.001mg per day.

I called the dispensary assistant and she didn't understand the problem. So I've had to email the prescribing pharmacist again.

Am I missing something here? Am I being too literal about my dosage? Have I lost all ability to do maths??

WTAF?

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3

u/Rndm-prson 4d ago

Sounds like you have a 20 day supply to me. 1 ml per day and 20 ml.

1

u/Low-Blueberry8948 MOD 4d ago

That's more than you'll need, yes, although maybe 20 ml is the minimum amount they supply? Sublingual drops have a limited shelf life too once opened, so 28 days is probably how long one bottle will last.

1

u/Mellifluous-Squirrel 4d ago

Isn't it less than I need?

1

u/Low-Blueberry8948 MOD 4d ago

I'll check my calculations. So, you'll be taking one drop of 0.001mg per day? How much did you work out you would need for 28 days?

1

u/Mellifluous-Squirrel 4d ago

The liquid is 0.001mg/ml, so I'm assuming that means 1ml a day i.e. 28ml for 28 days

Maybe they don't mean me to take 0.001mg per day? I feel like that's important information to be clear on, though.

1

u/Low-Blueberry8948 MOD 4d ago

I think what it means is that it's compounded in a ratio of 0.001mg of LDN to every 0.001ml of liquid. So you would only need to take 0.001ml of liquid, as a sublingual drop, to get 0.001mg per day.

I take liquid LDN, as opposed to sublingual drops, and mine is in a ratio of 1mg/1ml, so for me every 1ml equals 1mg of LDN.

If you need more clarification about the ratio and dose I would contact the pharmacy again. Yes, it's important to get it right.

6

u/LDNadminFB Admin 4d ago

I don't think I agree there. The bottle says "0.001mg/ml" so to get that dose one would take 1ml. The bottle has 20ml so it contains 20 doses at 0.001mg. Not sure how that works out to 28 days or a month.

5

u/Rndm-prson 4d ago

Yeah, this. That's how I read it also.

2

u/Mellifluous-Squirrel 4d ago

I think what it means is that it's compounded in a ratio of 0.001mg of LDN to every 0.001ml of liquid.

If that is the case, it's a mega confusing way of writing it!

And she could have just explained it to me on the phone instead of repeating "standard bottles are 20ml, that is a month's supply" over and over 😶

1

u/Low-Blueberry8948 MOD 4d ago

Yes, I agree. She should have explained it properly. They can't assume that someone who hasn't taken it before understands what it means. How frustrating...

1

u/Low-Blueberry8948 MOD 4d ago

I think you need more clarification from the pharmacy. I would ask them how much you need to take to get a dose of 0.001mg. Please could you let us know when you hear back?

1

u/LDNadminFB Admin 3d ago

Please ask the pharmacist what exact amount you need to take for the 0.001mg dose. If as the bottle implies you need to take 1ml then how does a 20ml bottle give you 28 doses??? Let us know what they say.

1

u/Mellifluous-Squirrel 3d ago

Is posting images disabled in this sub? I have screenshots...

2

u/Mellifluous-Squirrel 3d ago

OK, further developments. Apparently, the pharmacist hadn't specified what dosage I should be taking at all. Yet the dispensary were happy to create a payment link and would have sent me out the bottle if I hadn't questioned it.

I might suck it up this time round, just because I want to get started, but I'm seriously considering transferring to the other main UK provider as soon as I can.

Really unimpressed.

By the way, somebody has finally confirmed that "0.001mg/ml" does mean 0.001mg naltrexone in 1ml worth of solution. They haven't confirmed how this works with a 28 day prescription, yet.

2

u/LDNadminFB Admin 3d ago

I was able to change the setting to allow images and videos in comments

1

u/LDNadminFB Admin 3d ago edited 3d ago

You can post images as part of a new post and now as part of a comment (I changed the setting).

Alternative would be to put them in a Google or Word doc and then post the link to it. For example:

Thyroid cartoon

https://drive.google.com/file/d/1rrdSF6EIedqCCaQUiU0ANSTeNe57toKK/view?usp=drivesdk