Stuck and don't know where to turn

[Andypandy30]

Please can someone tell me simply . 1)what is the best b12 supplement to take while waiting for 3 monthly injections as I am not well after a week until next one . 2) can someone tell me why my doctor won't do the test for intrinsic factor ? To find out if I have pernicious anaemia ? 3) if I have pa am I able to get more frequent injections 4)even if I have low b12 due to pa do I still get done b12 from supplements and diet ? 4) where can I do this test if she refuses as I would like it done asap as I am due injection this week . How long would it take etc ? . 5) please can someone explain simply about folate / folic acid as I am not supplementing . Prior to my first 3 monthly injection My level was 302 once I received it my level went up quickly to 2000 then 2 months later it was at 1000 so I have evidence it worked but also that it dropped considerably while waiting on next one . Also what is the name or type of injection so that I can get the same one all the time as the chemist seems to have given me a different brand . Tia. X

[zbrown]

Hia Tia

All I can do is write from my own experience as I'm no expert; however the experts (GPs) have been no help in the past 3 years. As a result I've had to do my own homework and research and trial and error with numerous Vitamin B12 tablets/capsules as I'm sick and tired of being an exhausted human, multitasking life and living on too many cups of coffees (as many of us can relate!). For the last 8 months I've been talking a Spray form of Vitamin B12 by InMed technologies and can definitely say that I feel that I can cope much better with my daily life and I don't feel the need to sleep at midday just to cope. Not a miracle however less tired and another plus my immune system is stronger as my teenage kids have had one cold after another in the last 3 months and I've been spared.

Zara

[Andypandy30 in reply to zbrown]

Thank you Zara have you thought about self injecting this has got me to this point x

[Jennylind]

Hello,

I can't answer the folate question, but others on this very helpful forum will be able to.

The injection should, in most cases in the UK, be hydroxocobalamin, the brand should not matter.

If you are in the UK, it is likely that even with a diagnosis of PA, the most frequently you will be able to get injections is every two months, and only then if you have neurological symptoms and your doctor agrees that PA is the cause, and follows the treatment in the BNF (the UK prescribing guide which doctors are meant to follow). You do sometimes hear of some people whose GPs are open to more frequent injections. Also it's unfortunately the case that many GPs are ill-informed and don't follow even their own professional guidelines for treatment.

If you have PA (and sometimes even if you don't) you are unable to absorb B12 from your diet or from oral supplements. Some people find that nasal or oral sprays or sublingual lozenges help them, others find these have no effect.

Many people find that 3-monthly injections are not sufficient to relieve their symptoms, there is a lot of information available, and lots of advice from this forum.

Good luck!

[Andypandy30 in reply to Jennylind]

Thank u so much x

[Gambit62 Administrator]

1) all I can do is tell you the supplementation options - no way of telling which will work best for you as an individual.

methods of delivery: high dose oral tablets, sublingual tablets, sublingual sprays, nasal sprays, skin patches.

not much in oral v sublingual on average 1% absorbed

nasal sprays seem to be a bit better - around 3%

no idea on skin patches.

types of B12: cyano, hydroxo, methyl and adenosyl. - you can get adenosyl sublinguals but not aware of patches or nasla spray.

2) intrinsic factor antibody test can show PA is the cause if it come back positive - but it's a long way from proving PA isn't the cause if it comes back negative.

Most absorption problems require exactly the same treatment. Exceptions are where the cause is treatable so you may not need on-going maintenance shots. Basically that would mean h pylori infection.

given that it won't affect the treatment and that it is so unreliable it is easy to understand reluctance to fork out on the test

3) as above - diagnosis of PA as opposed to another absorption problem won't get you more frequent injections

4) you can probably get the IFA test done privately through a company like bluehorizon or medi-checks but to be honest it would probably be better to have tests to rule out other possibilities. St Thomas's in London may do it privately but not sure

The advantage of knowing exactly what the cause of the absorption problem is knowing what other consequences you might need to look out for.

5) folate is the name given to vitamin B9. folic acid is an artificial form of the same vitamin. There are other forms as well, such as folinic acid.

6) results after loading doses don't mean a lot unless they come back low. You aren't able to rebuild effective reserves of B12 if you have an absorption problem - so means that it stays in your blood until it is either used by cells or is filtered out in your kidneys. An injection contains a lot of B12 which gets into your blood but most of it is removed in the first 24-48 hours. The rate at which it is removed is faster the higher the amount in your blood is. Levels dropping as above is what would be expected - just that some people remove it faster than others. It doesn't mean that you are okay because this is only about the amount that is in your blood not the amount that is available and being used in your cells.

Raising serum B12 levels can start a reaction that stops B12 getting from your blood to your cells. Really high levels will beat the reaction, which is one reason why it is symptoms that count after loading doses not blood levels.