Is This For Real?

[B12again]

I came across this posting earlier and thought it must be a joke. If true, why are we still being deprived of the the treatment we need?

guysandstthomas.nhs.uk/heal...

[B12life]

I guess we are just doing it wrong. We just need to say we were huffing nitrous oxide.

Nice instructions though.

[Nackapan]

A good find and updated Feb. 24!

[helvella]

If you want to pass on this link, you can truncate the hash symbol (#) and everything after it.

Makes it somewhat shorter.

[B12again in reply to helvella]

Can you truncate this link, not grasping what you mean. It sounds like a great way to share links. 🙂

[helvella in reply to B12again]

You posted:

www . guysandstthomas.nhs.uk /health-information /how-self-inject-intramuscular-vitamin-b12?fbclid=IwAR2P_BrP7Gp3cMjQ4Si6WnFooOteq_z1Zg2C2wF2xhYYcydf4ehqSBEZrZM_aem_AedL9ilB6-pN6-ay_DudiLWvVrKc5YerP0kKtuFbXDYRPo9F0n7Spn4wdj0z2HV_AMRMlkOs0uaHCruanEwwJSyB#:~:text=The%20initial%20treatment%20involves%20daily,the%20patient%20themselves%20at%20home

But all you need is the before before the question mark (not hash as I put).

www . guysandstthomas.nhs.uk /health-information /how-self-inject-intramuscular-vitamin-b12

I have added a spaces between "//" and later in the links to stop HU converting themn into blue and shortening the links.

[B12again in reply to helvella]

Yep, got it to work. I have been gratefully educated, thank you.

[helvella]

The story reminds me that in the area of thyroid disease, thyroid patients are being denied T3 (liothyronine). But some cardiac and psychiatric patients get it despite not being overtly hypothyroid.

[RhianR in reply to helvella]

I'm going through this with T3/ Liothyronine currently. And this is despite evidence of clinical need for Hypothyroidism. My GP withdrew it from my repeat prescriptions without any warning. I'm fighting them currently, which is no fun when very unwell with Hypo & ME/CFS. And then I see this article, after being denied B12 for years despite a PA diagnosis. Even more upset & angry at how badly we are treated by those who are supposed to help us.

[clivealive Forum Support]

I've forwarded this on to PASOC - let's see what they do with it.

[B12again in reply to clivealive]

PASOC? 🙂

[clivealive Forum Support]

The Pernicious Anaemia Society.

You should join - I've been a member for nearly 15 years.

Night night.

[B12again in reply to clivealive]

Thanks, I am a member but not heard it called PASOC. 🙂

[Technoid in reply to B12again]

healthunlocked.com/pasoc/

[Seabird4]

Thank you for posting so if we report that our nerve damage is caused by sniffing NO we get more B12 injections but if it's caused by PA we don't?

[Myoldcat]

Yes, DAILY doses too! It obviously pays to be naughty... 🤪

[yorkshiregirl4]

I totally agree with you. On one hand it is difficult to believe. It makes the disgraceful service that most of us receive from the NHS feel like a joke as well.

[B12again in reply to yorkshiregirl4]

Sadly, from what I have just read from Sailinglady on my previous post at healthunlocked.com/pasoc/po...? (cudos to Helvella for teaching me to shorten links 😁). Private practice has been quietly with us for some time and money does guide the decisions even though SI is likely to be a net gain for practices.

[Katherine1234]

Gobsmacked! And daily injections! I am trying to rebuild my B12 after year long episodes of gallbladder pain. Which had the ambulances administering nitrous oxide to me, once or twice weekly. On some occasions I was on it for 4 hours, one time 8 hours waiting for a bed and treatment. Hospitalised again and put on 4 strong lots of antibiotics due to epstein barr reactivation, strep B and tonsillitis. I did not know that antibiotics take down B12 also.

If they can do this for patients re: nitrous oxide, why not for us? Perhaps our next campaign can be getting this facility in place for us. What does everyone think?

[yorkshiregirl4 in reply to Katherine1234]

Hi there, I too had no idea that antibiotics can take down B12 levels but that does explain my recent downturn following a course of antibiotics. Yet again our Gp's don't have a clue about anything! Hope you're feeling better Katherine1234 in spite of everything. Best wishes

[Katherine1234 in reply to yorkshiregirl4]

I am trailing copper which has made a huge difference to me yorkshiregirl. yes antibiotics take down b12, I did not know that. Especially Amoxicillin. I use to say I cannot take antibiotics they make me so ill. They also take the other B's down too. In Japan and some other countries they give you a prescription for B vitamins and probiotics whilst you are taking antibiotics.

[yorkshiregirl4 in reply to Katherine1234]

Hello Katherine1234, Many thanks for your reply. It is astonishing how we all need to keep learning about B12D and PA issues. Unfortunately we tend to learn the hard way, as you discovered about nitrous oxide and antibiotics. Are you taking a Copper supplement? It's always helpful to learn from others. Thanks.

[Katherine1234 in reply to yorkshiregirl4]

I am taking 6 mgs of copper with my lunch yorkshiregirl. Sometimes I take an extra 3 mgs early evening if I am working till late in the evening. I take 15 mgs of zinc every other day evening time away from copper. This is because the 2 have to be balanced, they compete. It has been a bit of a game changer for me.

[yorkshiregirl4 in reply to Katherine1234]

Many thanks for clarifying further.

[JanCymru in reply to Katherine1234]

I too was gobsmacked to read the article - definitely a case for us all to campaign and draw attention to genuine need for B12!

[Katherine1234 in reply to JanCymru]

I agree Jan, there should not be one rule for one and another rule for others.

[JanCymru in reply to Katherine1234]

Indeed Katherine1234, especially when help is given and almost encouraged for a 'recreational use' with such sever consequences, whilst we, with genuine need of B12 for good health are left to flounder and beg for help and recognition of our plight! Grr!!!

[Katherine1234 in reply to JanCymru]

It is not right Jan.

[tomdickharry]

Yes, if you're an addict you get preferential treatment. Have an actual real disorder, however......

[Wwwdot]

HiB12again

Well spotted!

I would love this level of support from the NHS!

What is the logic that every day for depletion of B12 in a supposedly healthy (but naughty!) person is clinically sound yet once every 12 weeks for depletion caused by a broken B12 system? Both can’t be right, surely?

At least I don’t feel quite to “ridiculous” 🙄 injecting every day!

🤗🤗🤗

[B12again in reply to Wwwdot]

On the nail, Wwwdot. Well said.

[Suzibelle]

As I read this it's the early evening of April Fools Day and I'm wondering who's the fool - us, for being good and virtuous and playing by the rules (mostly!) despite desperately needing the vitamin, or the medical system and hospitals for prioritising idiots over genuine suffering...

[Wwwdot in reply to Suzibelle]

Hi Suzibelle

Good point! But no we are not fools, it’s never wrong to do what’s right

but in this case it worked out right by doing wrong.

🤗🤗🤗

[Cobalt1312]

Thank you for posting this!

[B12again]

I rang Guys using the number on the links web page this morning and following is a text summary of the 7 minute conversation.

“The conversation delves into the challenges faced by individuals grappling with B12 deficiency, in accessing self-injecting materials due to GP reluctance and lack of knowledge. Despite legitimate medical needs, patients encounter barriers such as skepticism, safety concerns, and lack of training from healthcare providers to self inject. This leads many to resort to self-sourcing the materials at their own expense, despite years of contributing to the National Health Service.

The dialogue exposes the disparity in access to treatment, with nitrous oxide abusers seemingly receiving more lenient treatment protocols compared to genuine medical cases. Amid discussions on the political dynamics and double standards surrounding B12 supplementation, the importance of GP referrals for legitimate prescription was made plain so testing could be carried out (this pertains to Guys & St Thomas Hospital Trust). 

The conversation underscores systemic challenges within the healthcare system and highlights the need for collaborative efforts between patients and healthcare providers to navigate these complexities effectively.”

The gentleman I spoke to came across as articulate and authoritative and patient (he sounded like a doctor). He did not know I lived nowhere near London but did say on parting that they could see me if I got a GP referral or presented myself at AE for assessment. So if you’re in London and suffering through lack of treatment then try AE. If you feel like ringing them because many of you will be more articulate than I am in these situations and it does get a point across if lots of people contact them. It’s a sort of direct action. The number is on the web page, link in my original post.

Ambulatory Emergency Clinic

[Wwwdot]

You are amazing B12again.

I am going to ask my GP for a referral … see what happens!

Thank you for making that call!

🤗🤗🤗

[Clare184]

Wow, just wow! This has made me so cross to see, read your post on the same day my GP cancelled my injection appointment because it was booked for 2 days too early. Might need to develop a laughing gas addiction to get treated properly, would make us all more cheerful too 😂😂😂