Help ...this B12 rollercoaster is doing my (fuzzy) head in

[ottiliefloyd]

Hello All

I haven't posted on here for a while. I have been doing great SI every 2nd day until all my neurological symptoms had gone and bit by bit the rest disappeared too. To the point I was going to the gym 5 days a week and felt the best I'd ever had. I ordered a 2nd batch of B12 vials from Germany in January as my first 50 were quickly disappearing. From February I backed the injections down to twice weekly and then I received a notification that my injections had been confiscated by TGA Border Control and I had to provide a GP prescription for the 100 vials. Of course, my (old) GP wouldn't come to the party despite having proof of PA diagnosis. The most she'd inject me was once every 2nd month after loading doses, hence the reason I switched to SI. I reached out to an old retired GP friend for help and he came back saying I needed to see a haematologist for proper dosing as B12 is deadly. I stopped injecting all together mid April. I should have done my due diligence on this forum at the time - thanks to links @Martin_12 sent across I subsequently realised it wasn't.... however by that stage (12 days ago) I was almost back to square one with the exception of the neurological symptoms. The brain fog, depression and sheer exhaustion drove me to move onto yet another GP. Armed with reports and medical studies PKF of @Martin_12, I fronted up to the 6th GP in 18 months. Thank heavens, he listened. He read the reports, looked at the test results and went right through my history and told me to go ahead and inject every 2nd day and he would write a prescription should my next import get stuck in customs... so for the past 12 days I've been injecting every 2nd day... it got better in the first 3, the cloud lifted, my brain and memory 'cleared' and I stopped crying at anything and everything.... then 3-4 days ago it got a whole lot worse. My head feels like a brick, I see double of everything, I can't remember where I am or what I'm doing or where I'm going, my face is started to go numb and I can hardly feel my hands, my feet are like ice bricks, I run into things and everything I eat is coming back up. I can't remember back now to when I first started SI on B12 .... is this normal that you get better then worse? Do I keep SI every 2nd day? I'm beginning to wonder if you really can overdose.

Sorry to write so much. Just feeling so sick and I don't know what to do next. Scared to go back to GP and tell him all this as I don't want him to reverse his support of SI every 2nd day if I'll likely 'get over it'.

Appreciate anyone taking the time to read and respond to this.

[Nackapan]

I'm sorry you are so ill.I think sometimes if b12 is suddenly stopped yoh geg tgd catch up with trying to get back on track.

If yoh hD been doing so well before om sure you csn get back to that place

Don't rule out you msy be ill with something else

[ottiliefloyd in reply to Nackapan]

Thanks Nackapan, I should never have stopped doses in the first place. Scary that you can go downhill so fast with only 5 weeks between the last injection. Going back to GP - am currently injecting Hydroxocobalamin - wondering if I should change

[Cherylclaire Forum Support]

Like Nackapan said, it could be something else as well/ instead. But many many people on here got worse before better -so it looks as if you could indeed be starting again from scratch.

In which case, you might want to get folate, ferritin, vitamin D and possibly thyroid checked as well. See what they are up to.

Why border control is bothered about 100 vitamin doses, I can't begin to imagine. Would have thought there were far more serious border problems currently. Let's hope today's Westminster discussion about OTC B12 amounts to something soon (see today's posts).

I self injected every other day for a couple of years before lowering frequency to every three days. My GP at one time was ensuring I got injections twice a week and this continued for 6 months (at first, much improvement until I too took a sudden nosedive).

Those with an inherited functional inability to get B12 to cells are given injections twice a week. They have no other choice. This information came from a consultant who studies DNA and advises GPs about subsequent treatment.

B12 itself is not harmful. The NHS would not be treating people at these frequencies if it was.

What concerns me most of all is that you are unable to retain your food. You do need someone to keep a close eye on you- the GP you saw last might be your best bet. There might be something else that needs attention.

You could also get seen by an optician - one able to test for any B12 deterioration. My optician showed me photos of the eyes of patients with B12, and then tested mine, just to reassure me that there was no evidence of any deterioration causing my blurry eyesight. He has put the test for damage caused by B12 deficiency down on my file, so that it gets regularly checked. Any evidence of a problem here would also act as a strong deterrent for a GP thinking of reducing your injections !

[ottiliefloyd in reply to Cherylclaire]

Thanks cherylclaire

Vitamin D was low along with B12, ferritin and folate were in range. I haven't tested for Thyroid since beginning B12, it was always in range but the low end. I hear B12 can mask it so would probably be worth checking. Will get results of celiac test tomorrow.

I'll keep going with the injections and fingers crossed it improves!

[Cherylclaire Forum Support in reply to ottiliefloyd]

Let us know how it goes, okay ?

[ottiliefloyd in reply to Cherylclaire]

Sure will do. Really appreciate everyone's support and care on this forum. I would have been totally at sea still if it wasn't for the help of so many members!

[ottiliefloyd in reply to Cherylclaire]

Well I had a phone consult as B12 symptoms so bad I can't drive 😓 The celiac test came back negative... which was to be expected as I stopped eating gluten over a month ago. Dr has suggested IgG food allergy test which will pick up an intolerance as I don't want to subject myself to 5 weeks of ingesting gluten.

Just hoping these injections kick in soon.😵

[Sleepybunny]

When B12 treatment first starts some people can experience a drop in potassium levels...I don't know if this is a possibility if there is gap in treatment then treatment restarts again.

Has GP tested your potassium levels?

Some forum members include potassium rich foods in their diet such as bananas.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

"The celiac test came back negative... which was to be expected as I stopped eating gluten over a month ago. Dr has suggested IgG food allergy test which will pick up an intolerance as I don't want to subject myself to 5 weeks of ingesting gluten."

Guidelines below suggest that people with suspected coeliac who don't want to start eating gluten again should be referred to a gastro enterologist. See section 1.1.5

nice.org.uk/guidance/ng20/c...

Has your GP referred you?

Which coeliac tests were done?

I am not medically trained.

[ottiliefloyd in reply to Sleepybunny]

Thanks Sleepybunny

I haven't had potassium levels tested so I'll ask the GP to add that in the next round in 2 weeks.

Here's the coeliac test results

Deamidated gliadin peptide IgG < 1 U/mL (< 15)

Total IgA 3.28 g/L (0.40-3.50)

Transglutaminase IgA < 1 U/mL (< 15)

Although I suspect this could be the case - False negative results may occur in affected individuals compliant with a

gluten-free diet.

I have had another blood test done which tests for IgG reaction and you don't have to have it in your system for the test to show up an intolerance. It has been sent to a lab in Germany so I went get the results for another 10 days or so

[Sleepybunny in reply to ottiliefloyd]

Have you been referred to a gastro enterologist?

[ottiliefloyd in reply to Sleepybunny]

No not yet. My last apt was via phone and I've lost my voice so it made it all very interesting 😌 GP just went through results and emailed them across - I couldn't say much or explain symptoms had got worse so I'll wait till next F2F to discuss.