• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Sourcing Vitamin b12 from U.K. - KDM patients

JadeD

Senior Member
Messages
165
Location
UK
To all UK KDM patients,

Can you tell me how you sourced vitamin b12 injections (hydroxocobalamin) from the UK? I had my first appointment with KDM this week and he said high dose vit b12 20mg/week is the only thing that will help my leg pain. I forgot to ask the nurse so please could you include details of how you administer also e.g sc vs im etc. I'm due to see him for follow up in 8 weeks but would like to start this asap if possible. Not sure how much support I'll get from my GP so may have to be brave and do it myself!

Many thanks

Jade
 

Bansaw

Senior Member
Messages
521
Jade, I am going to see KDM in the Summer God willing.
I am taking the full tests.
Can I ask what you were able to eat during your days? They say vegetables, fruit, fiber, etc are all of the list. It seems that the only things left to eat are white bread, meat and cheese! Their list of foods to avoid is quite extensive.

As for B12, my doc who is up on Methylation recommended I take Hydroxo and Adeno B12. I've felt a boost from that. The tablets are sublingual so are absorbed well.
https://www.seekinghealth.com/hydrox-adeno-b12-60-lozenges

I've seen the same product on a .co.uk website somewhere too...
 

JadeD

Senior Member
Messages
165
Location
UK
Jade, I am going to see KDM in the Summer God willing.
I am taking the full tests.
Can I ask what you were able to eat during your days? They say vegetables, fruit, fiber, etc are all of the list. It seems that the only things left to eat are white bread, meat and cheese! Their list of foods to avoid is quite extensive.

As for B12, my doc who is up on Methylation recommended I take Hydroxo and Adeno B12. I've felt a boost from that. The tablets are sublingual so are absorbed well.
https://www.seekinghealth.com/hydrox-adeno-b12-60-lozenges

I've seen the same product on a .co.uk website somewhere too...

Thanks Bansaw. I'll take a look at the vit b12 sublingual tabs - although I'm not sure if they're as efficacious as the high dose IM injections? I know the sublingual tabs avoid first pass metabolism in the liver so are much better absorbed than an oral tab. I'll definitely give them a try if I can't get my hands on the injection though (or not brave enough to self inject eek).

In terms of the diet before the fructose and lactose test - I just ate meat, potatoes/crisps (with no skin on), gluten free white bread and cheese! Not particularly exciting but obviously nothing with large amounts of fibre in that could affect the tests.

Good luck for your appointment in the summer. I had a great experience, he's extremely knowledgeable and professional, the clinic runs like clockwork and the staff are really friendly. Any other questions, just let me know.
 
Messages
15,786
@Jadedarler - While the UK is still part of the EU, your local pharmacy should be able to import it for you from Belgium based on KDM's prescription. Depending on the quality of the employees at the pharmacy, their ability and interest in doing this may vary considerably :p

We've always been able to pick up the B12 immediately at Apotheek Pol de Saedeleer at Antwerpsestraat 149 in Lier when bringing in a prescription. It's about halfway between Brussels and Antwerp.

You'll probably have to pay for it out of pocket, but that shouldn't be a surprise by now. In my experience, it's worth it, since I don't have that constant deep ache all over my body when I inject once or twice per week.
 

JadeD

Senior Member
Messages
165
Location
UK
@Jadedarler - While the UK is still part of the EU, your local pharmacy should be able to import it for you from Belgium based on KDM's prescription. Depending on the quality of the employees at the pharmacy, their ability and interest in doing this may vary considerably :p

We've always been able to pick up the B12 immediately at Apotheek Pol de Saedeleer at Antwerpsestraat 149 in Lier when bringing in a prescription. It's about halfway between Brussels and Antwerp.

You'll probably have to pay for it out of pocket, but that shouldn't be a surprise by now. In my experience, it's worth it, since I don't have that constant deep ache all over my body when I inject once or twice per week.

Thanks Val, that's really helpful. And yes I'm used to being out of pocket and I've only just started!!
 

Hip

Senior Member
Messages
17,824
Can you tell me how you sourced vitamin b12 injections (hydroxocobalamin) from the UK?

Goldpharma.com sell the cheapest B12 hydroxocobalamin injections I have come across. This document tells you how to do subcutaneous injection.


Alternatively, there are now forms of B12 available that contain intrinsic factor in the supplement pill, which then enables much more B12 to be absorbed. The stomach secretes intrinsic factor specifically to facilitate the absorption of B12, but because only a small amount is secreted, it limits how much B12 is orally bioavailable. However, with intrinsic factor placed in the pill along with the B12, you can get around this limitation.

As far as I can work out, B12 + intrinsic factor supplements may be comparable to B12 injection in terms of how much B12 gets absorbed, but I have not seen any definitive reviews or data on this new type of B12 supplement.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I think they prefer you to do IM injections - and you would need someone to teach you how to do this. However I had a lot of success with Sub Q B12 and its easy to learn to do. Wouldn't fancy IM personally - not without some proper training. My GP surgery nurse was happy to show me how to do the Sub Q injections, but I realise not all are that helpful.

Ye EU prescriptions are valid in the UK - otherwise of you cant arrange that there is one that ships? not sure which pharmacy, others might know. In the ned I always picked up scripts while I was there - much easier than the faff of sorting it all out in UK.
 

keenly

Senior Member
Messages
814
Location
UK
To all UK KDM patients,

Can you tell me how you sourced vitamin b12 injections (hydroxocobalamin) from the UK? I had my first appointment with KDM this week and he said high dose vit b12 20mg/week is the only thing that will help my leg pain. I forgot to ask the nurse so please could you include details of how you administer also e.g sc vs im etc. I'm due to see him for follow up in 8 weeks but would like to start this asap if possible. Not sure how much support I'll get from my GP so may have to be brave and do it myself!

Many thanks

Jade

I have 5 transdermal sprays, and 7 sublingual sprays for sale if you are interested. I am in UK. These are brand new. I bought bulk lots, but now need to raise funds for a huge bill I have incurred.

http://www.b12oils.com/BGroupBuy.htm
http://www.holisticheal.com/shmt-spray.html

Message me if you want anytime.

If not I would look for a European Pharmacy.