New here and needing help and encouragement

[Carolyn1964]

Hi everyone,

Just joined the PA society and the forum.

I was diagnosed with vitamin B12 deficiency (level at 150) in June and was immediately started on 6 injections of loading dosing then told the usual - come back in 3 months, how ever after my injections I got worse and worse to the point I can hardly get up the stairs!! After 3 return visit to the doctor - told No you can't have any more injections and No your symptons aren't worse - I dragged myself to NHS 24 where a muscle enzyme test was completed - of course this came back as normal but still had all the leg pain, weakness and now numb feet!!! Had an appointment for blood results and end up crying to doctor as literally didn't think I could carry on any more - thankfully I did this as low and behold she managed to get me an emergency app the next day with a specialist - everything pointing to Viamin B12 deficiency!!! Now on an injection every other day for the foreseeable future but feel awful - couldn't even get up the door step this aft.

I'm taking berrocca daily and a vitamin B12 boost spray - is this ok to do? (Only just started this) but am desperate to know how long I'm going to feel like this, no energy, no enthusiasm, tired, worse legs ever, very weak muscles and general feeling yuck

Please advice xx

[Lisahelen]

Hi, tried copy/pasting reply i gave in the post fed up please help as the same reply from me would apply to you. Its about six below your post if you want to take a look

[fbirder]

It can take a while for the body to recover from a lack of B12. New blood cells need to be made (and the body does so at the same old rate) and nerve insulation needs to be rebuilt.

The Berrocca does provide large doses of B vitamins, but that should be OK as they're not too large. As well as what's in there you may want to try adding potassium (I take mine in the form of bananas) and iron (Solgar Gentle Iron, from Amazon).

[Gambit62 Administrator]

You may find my response in this post interesting

healthunlocked.com/pasoc/po...

I'm not really clear on what the timelines are from the post above - how long is it since you had your first loading shot? and do you notice any positive benefit from a B12 shot, even if it doesn't seem to last very long?

It may be that treating the B12 deficiency is causing other deficiencies - eg folate or potassium - though your description of what is happening doesn't fit with potassium deficiency.

It may be that the initial loading shot has kicked off a reaction that is leaving you deficient at the cell level - functional B12 deficiency. There isn't much literature that I have been able to find that covers what to do in this case though there are a few references to people who responded to frequent B12 doses ... and that fits with my experience.

[Carolyn1964 in reply to Gambit62]

Hi gambit,

Thanks for your reply

First loading dose 26th June then 5 more after. Nothing until Tuesday this week due to my badgering the doctor! Am struggling so much but no one seems to listen!!!! Just want to feel well and back to my old self which was only 6 weeks ago!!!!

[Gambit62 Administrator in reply to Carolyn1964]

thanks for the clarification - sounds like the problem is that you really need more frequent B12 injections - there is no scientific justification that I am aware of for the 3 months that is normally used for maintenance shots. There was a study in the 1960s that showed that on average people retain hydroxo twice as long as cyano but also highlighted that a significant number of people actually retained cyano longer than hydroxo. It was shortly after this that the frequency of treatment became 2 months ... and then in the 1980s it went to 3 monthly if there was no neurological involvement - all the evidence that I'm aware of points to cost-cutting as the reason there.

You are not alone in finding that shots do not last for 3 months - personally I've yet to come across anyone who actually thrives on 3 months - the PAS did a call recently amongst its members for people who did and the numbers that came forward reporting that they were okay on 3 months was low and at least half of those reported that they knew when their injections were needed - which sort of implies that 3 months wasn't right for them.

If you can't get your GP to budge on 3 months (hoping that the referral to the specialist will go well and they do budge) then there are different types of supplementation that you can try - which try to use absorption outside the gut. I find nasal sprays really effective for me - others find sublinguals and even skin patches useful. These are 'just' nutritional supplements so aren't covered by the prescription only rules that apply to injections in the UK. If they don't work then there is always the option of sourcing B12 from outside the UK and self injecting - either intra-muscular or sub-cutaneous. B12 is available without prescription in a number of other European countries including Germany and France. Many on here source from amazon.de and others from a number of reputable German on-line pharmacies.

Fingers crossed though you do get the B12 you need as a result of the referral.

[Carolyn1964]

I am currently on an injection every other day for foreseeable future but feel worse!!! Has any one ever used a tens machine? Would this help?

[Gambit62 Administrator in reply to Carolyn1964]

I haven't tried a tens machine but did want to say the following.

Sometime people do go through a period when they feel worse before they feel better.

Some experience flu like symptoms - which may be the effects of the immune system starting to kick in again and fight infections that it hasn't been fighting properly for a while. I had a full blown cold with the worst runny nose I'd had in years a few days after I started supplementing at the levels I needed.

Some find that the aches and pains get a bit worse before they start to improve. I think this may be because signals that haven't been getting through for a while, or had only been getting through weakly, suddenly start coming through much stronger and the brain is just a bit overwhelmed - like a radio or tv suddenly becoming much louder when the signal has been weak for a while. I had a period when my carpal tunnel symptoms suddenly got much worse - something I hadn't had for a number of years but it went after a little while.

Its also possible that anxiety and other psychological effects may be a bit worse for a while.

Some people also experience rashes and spots - which again is probably down to the immune system kicking back in.

You probably didn't get all of this last time you had loading shots because the relevant systems were not functioning at all but having had a chance to recover a bit they are responding now.

Sorry, this probably isn't as much help as it could be as it is awful being in pain and not having any energy and just wanting it to be different. Do you have any music or anything that you really enjoy but doesn't require much effort that might help to distract you from the pain ... though have to admit that I'm one of those that doesn't have any problems reaching for the painkillers if I think it is going to ease things.

[Carolyn1964 in reply to Gambit62]

That's so helpful - thank you so much.

Just have the energy of a gnat and so tired even though not doing much - just led in bed watching a film and googling vit B12!! Just want to feel better but all of your advice is certainly helping 😊

[Secondchance]

Try keeping symptoms diary to help demonstrate change. Good advice already above.

Well done for getting right treatment.

Look after yourself and be careful not to overdo things when improvement starts again (know from experience unfortunately). It took 2 months alternate day injections to help most my neuro symptoms.

Good luck!

[Carolyn1964 in reply to Secondchance]

Many thanks for reply. How often are you having injections now?

It's so bad that we have to fight for treatment!!!!

[Secondchance in reply to Carolyn1964]

Yes it was a battle for me too but worth it. Now find I'm best on fortnightly jabs. Tried monthly but it was a struggle with shortness of breath before next jab. I also take 5mg methylcobalamin daily - helped finger pain and methylfolate plus B 50 complex for day or two around jab time. B vitamins are a complex so best keep in balance to get best use B12. Especially need folate to utilise B12.

Trial and error for everyone unfortunately. Definitely not one size fits all. Symptom diaries can help work out what helps.

[Carolyn1964 in reply to Secondchance]

Don't think I'll last for 3 mths either gonna keep going every other day until feel better

Take vit d, b12 boost spray and berrocca (only just started) hoping all will help!!

Will keep a diary - great idea xx

[gillsie]

Hi carolyn

It took a while for me to feel better after being deficient for years undiagnosed (level 75 on diagnosis) i also discovered that my serum ferritin was very low. Even now despite some iron supplements can onky get iron up to 39 range 10 to 300. Have you had your background iron checked? I need frequent jabs too but 4 years on have improved but sadly now have other issues. Hang in there but try to get info about your iron status. I think getting everything in balance with PA is hard and takes time trial and error. This site has been invaluable to me and i thank the contributors. It helps having people to share with.

[maiken]

I am just in about same place as you are, and it's scary, right! You feel so alone, and so misserable because many Doctors does not take this serious enough. They have a lot of knowledge on different diseases and medicins, but when it comes to vitamins and minerals, they know next to nothing.

I have tried so many things on my own during the last 6 months - cyanocobalamin, not for me! Methylcobalamin - made me extremely anxious, depressed and so on.. I'm having better luck with hydroxocobalamin, but there's still something, that isn't right, and most days I'm very tired and having a rapid heartbeat. My Doctor finally tested my iron levels, ferritin, after I insisted, and they were indeed very low. Only just above the limit. And your iron stores get so quickly depleted, once you start treating the B12 deficiency.

I'm also taking a B Complex - important to balance your B's. And vitamin C and a good quality fish oils. I plan on adding a mineral complex also.

Hang in there, you will feel better!

[Ladystardust]

Hi Carolyn,

We are both in same town and chances are both reg at same health centre. You know the one. I was diagnosed in may and have already had battle with doctors for more frequent injections, they won't budge from the guidelines. I am now SI daily. After another battle local health centre will give me needles on prescription, did try boots as they have needle exchange. They gave me some as one off and told me to fund my own in future, as they only supply junkies and steroid users. Clear pharmacy will provide sharps bins though if you do go self service. I have sourced my b12 from b12d.org and versandapo.de. they are based in Germany and my order from them to me here in Forces took 4 days.