B12 / PA roller-coaster and further tests

[TheSunshineSanctuary]

Hi all - I'd really appreciate any support and advice you can all offer please as it's all got a bit too much today.

I've been feeling unwell for a while now but I initially put the exhaustion, brain fog, migraines with visual auras etc down to going through a difficult few years personally and that my body wasn't coping with the ongoing stress I was under. I kept pushing on trying to deal with everything but it was gradually getting harder to function. Anyway, earlier this year I had a phone consultation with my GP surgery and had bloods taken, I have a vitamin D deficiency (on Strivit-D3 800 IU tablets for 12 months).

They then did an intrinsic factor test and it's been confirmed that I have Pernicious Anaemia. The nurse told me my B12 levels were extremely low - they came back as under 100pg/mL (apparently they don't get more specific readings under a hundred).

Had my loading doses end April (felt quite up and down but eventually started to feel better) and was told come back in 12 weeks. However, it didn't last and after struggling through I went back after 4 weeks. Next time round I manged to 3.5 weeks but found it really hard going and it took me several days to pick back up after the injection. The nurse spoke to the GP and they agreed to amend the frequency to every 4 weeks for now - she said my levels had been so shockingly low to start with I clearly needed them more often to build some reserves back up but to come back sooner if needed rather than keep on pushing myself.

The issue is that a few days after an injection I feel good but I notice a difference already after a week with my stamina starting to drop. By 2 weeks I start to struggle - dull headaches come back, mix of good and bad days but I have less energy and find it more difficult to concentrate etc. By 2.5 weeks it's really hitting and pushing on for 3 weeks is very hard going.

I'm at just over 2.5 weeks now and feel awful - I've been using 1200 B12 spray daily for the last week or so (usually more than it says) and I did very little the last few days to try and rest up as I didn't have the energy but I'm just so drained.

Went back today and the nurse spoke to the GP - they've decided not to give me an injection as they've booked me in for bloods in a few days to see how my B12 is doing and also do neuro bloods (I've mentioned a sort of loss of feeling I've noticed at the top of my foot / ankle - its got a bit better last couple of months but still there so they may refer me to a neurologist). Once my bloods are back and reviewed I have to call up in the morning and hope to get a GP appointment.

I've been reading articles on here and am also a member of the PA society so been doing my research. Have mentioned that the NICE recommendation is for every other day injections until neuro symptoms go away - I've previously been told loading doses should be enough but I guess its good they're now considering a referral. Anyway, I'm really anxious now - partly because I clearly won't get another injection for a week and partly because I understand that any blood test after starting B12 injections won't give a meaningful reading and I'm so worried they'll decide I'm fine and should go to every 12 weeks or something.

I have seen some improvements - I don't look so ghost like anymore for a start!! But I'm not ok at all - the roller coaster of feeling good then going so far downhill over such a short space of time is really taking it's toll and I can't cope with it at all. I ended up crying in front of the nurse, which is not like me at all, but I just feel so tired, overwhelmed, emotional and can't think straight today.

Sorry that was all so long! I clearly need to just ride this week out but any advice on where I go from here and what I need to know for when I eventually see the GP?? If it makes any difference at all I'd be willing to go private if that route is an option and worth it.

Thanks in advance!

[wedgewood]

I have been where you are now ,so I really feel your desperation. ( except that I had to go to a private doctor to get a positive Intrinsic Factor Antibodies test ) You really do need to get more regular B12 injections. The medical profession is incredibly ignorant on this subject unfortunately.

I needed more regular injections . ( my GP said anything more than 1 injection every 3 months would be toxic !) I luckily found this forum , way back in 2014 , and found out how to self inject and “ save “ myself . I suggest that to you .I found that I needed an injection every week . If you wish to know more about self injection , just say so and you will get the information here . It is easy and cheap .

[Wheat]

hello, I agree with wedgewood. This is almost exactly what happened to me. I belong to PAS too. I f you do not have (at least NICE alternative days) you risk permanent physical and psychological damage. I do not say this to alarm you. But many gps and nurses are clueless, they do not realize the damage they are doing. I self inject (subcutaneously into the tummy, the needle is small, it's virtually painless) every day, I had to, to get the treatment I need. Best wishes.

[Nackapan]

8It'd good they have increased your b12 frequency but it's clearly not enough of you can feel any improvements waining before next injection.

My reading was 106ng/l (200-900)

My daughter in the 80s

I had to go back on every other day for months via Gp.

Took a fight though .

Difficult when ill

Sounds like you have a good Gp that listens .

I also needed vit D loading .

Level was 21 ( 70+

800mg sounds a low dose .

Do ask about that

Also folate level iron ect

It will get better but you need time.

K

I presently have a 2 weekly b12 NHS prescription.

It is possible especially with a neurologists approval.

Thus regime has been threatened many many times .

I during lockdiwn with the help from here decided to get my own supplies as well.

I do subcutaneous at home and an IM one every 6 weeks at the surgery .

I woujd presently push for every other day as per Nice guidelines with neurological symptoms.

It is early days .

You've obviously been deficient for some yesrs .

You will need injections for life at the regime that keeps you as well as possible.

Your body will feel overwhelmed at present and as nerves wake up will get all sorts of weird symotoms .

Try and keep a log.

Hope it goes well.

P.s the b12 tablets and sprays didn't work for me either.

Use them up as some will get in as some passive absorbtion. Not enough though .

[Hectorsmum2]

The guidence is to not retest bloods re B12 once diagnosed. YOu could poijnt this out to doctor as result maybe high but you still need your injections and will do for life. I inject myself twice weekly as unable to face the battles with the health service.

[PAapr22]

Sharing my summary. This is also very similar to mine.

Last year April I was diagnosed 56pg/100 AG PA, as kept pushing through and hitting a brick wall. 2 months to fight for loading doses. 12 months to fight for monthly injections.

Had private endoscopy to confirm all. Had private neurologist and nerve conduction to prove damage to nerve in heel and hand.

Felt worse much worse after loading but takes minimum a year to start feeling better.

SI every two weeks now. As I now know the symptom kicker to tell me to inject.

Take complex vitamin tablet daily.

Now back to running, martial arts, gym but not much alcohol - that depletes me.

But do have to SI

Hope that helps

[Technoid]

With such a low B12 reading, I would not be considering a B12 injection less than every other day. Your GP may not see sense and you may be forced to self-inject. No-one wants this but unless you get adequate, prompt treatment, further decline is possible up to and including damage which may then not be fully recoverable. GP's do not understand the seriousness of this.

Do not let their complacency lull you into a false impression that their current treatment regime is safe or effective. The treatment is not in agreement with clinical guidelines/best practice nor the advice of the best B12 specialists. They are risking YOUR health, but they will not bear the consequences nor have to live with them.

As Nackapan mentioned, the 800IU daily vitamin D is a very low dose for treating a deficiency, I would expect 3000IU to 4000IU to quickly get Vitamin D levels up, which could then be decreased if absorption is ok and levels are in a good range. Up to 4000IU is safe and is the current Vitamin D tolerable upper limit so you need not be concerned about overdose with this, especially in a deficiency situation.

[TheSunshineSanctuary]

Hi all - thank you so much for all your replies and advice, it's really appreciated. You've given me lots to think about! Whilst I wouldn't wish this on anyone and I'm so sorry to hear about all your experiences too, it is also somehow comforting and a relief to hear people say they understand.

I have been reading and processing; having a 'good' day today so wanted to get all my thoughts down to get it all straight in my head ahead of speaking to the doctor. So this is my plan - is there anything I've missed??

Blood Tests:

Going today for them to check my B12 levels - will ask that they retest my vitamin D, iron, folate and potassium at the same time to ensure they've not been depleted by the B12 treatment.

GP appointment:

- Have a full list of symptoms ready to discuss.

- If my B12 levels are high, will be highlighting NICE guidance that it's not beneficial to test after treatment has started. Plus have been using B12 spray and test doesn't differentiate between B12 I can use and what's there but can't be absorbed. Also that should be focusing more on symptoms not B12 levels.

- Will be querying vitamin D supplement levels.

- Requesting ideally weekly but minimum 2 weekly injections for now(based on being able to notice B12 wearing off after a week and symptoms becoming much more obvious at 2 week mark).

- Remind GP of risks of permanent damage / no ability for body to heal without the right level of injections - long term damage will be far more costly to NHS than injections!

- Highlight impact the rollercoaster of symptoms being created by the insufficient treatment, plus the need to keep withdrawing and resting, is having on my mental health.

- Explain how symptoms such as fatigue and brain fog are making carrying out basic tasks, my job and exercising much more difficult and that I'm not coping well due to the rapid return of symptoms not that long after injections.

- Push for a referral to a neurologist and every other day injections until symptoms stop improving.

Have other symptoms but think these are the most relevant for getting a referral? (they come back to varying degrees as the injection starts to wear off) - loss of sensation foot / ankle ('stocking' feeling); off balance; dizziness; clumsiness; brain fog; lack of concentration; forgetting words; headaches / migraines with visual aura; irritability / finding light, noise, crowds overwhelming.

Next steps:

- If the above is unsuccessful then I'm going to try writing to my GP, highlighting guidelines and my symptoms so that it's on record.

- I'll also get a copy of my results and see if I can get a second opinion from a private GP / Neurologist.

- Start a daily log of symptoms.

- I'm also going to see if any beauty salons / private GP's can give me some extra doses.

Self injections:

If all else fails I'm coming around to the possibility of self injecting, although it's shocking that any of us should be put in that position! I'm nervous about that approach though given you can't just buy the supplies over the counter in the UK.

Where would I need to look to buy the B12 and how do you know there's nothing dodgy in there that you could be injecting into your body?? Is it easy to do the injections yourself? Did you get someone to show you how first?

Thanks all... wish me luck, sounds like I'll need it! 🍀

[jade_s in reply to TheSunshineSanctuary]

This sounds like a great plan! Amazing how much we have to advocate for ourselves for such a simple vitamin. Wishing you much success.

I will PM you with some info. The b12 we use is from reliable online German pharmacies, regulated by their government. B12 is over the counter there. Some of the brands eg Panpharma is even sold to the UK, rebranded as Accord, and used in doctor's offices.

Some people have had success asking their doctors to teach them to SI. So that is something you could bring up if they start complaining about office time/cost.

I learned from youtube LOL.

It's daunting at first but it is easy. My hands shook like a leaf the first few weeks but i can do it with my eyes closed now. I do SC. I tried IM & went through the scary phase all over again but now find it quite doable.