How long will this last for?

[Peacelily24]

Long story short, I’ve been feeling very tired for months (even years) to the point that I needed to take a nap in the afternoon on some days as my brain wouldn’t allow me keep going. I also started noticing trembling, tingling, pins and needles and headaches/migraines. I reached the point that I was not able to sleep as I had headaches and tingling in my arms.

Thankfully, my GP discovered I have a b12 deficiency (reason unknown) and I’m currently on b12 shots twice a week (Tuesdays and Fridays). I’ve had four shots so far and I’ve noticed a pattern - the day after the shots I feel very poorly and I can barely get out of bed to go to the toilet. I just feel exhausted! Also, I feel like my left arm is getting ripped off/cut through. The following day I feel slightly better but depressed/sad and by the third day after the shot, I feel better but it’s then time for the next shot and the cycle starts again.

How long will this last for? I’m being patient with my body as I can see improvements such as better vision (everything looks vibrant and more defined) and a clearer mind for a couple of hours. I’m just tired of this rollercoaster.

Also, is anyone on sublingual tablets? I believe my GP will put me on those after my loading phase.

Many thanks in advance for your responses!

[Oneash]

Hi Peacelily, welcome to the club. Firstly when speaking to your GP it's essential to point out you have clear symptoms of neuropathy and you should stay on injections, ideally every other day, for as long as you need them. It's called reversing out and it is a bit of a roller coaster ride for the first 6 months.

Vitamin B12 is essential for your blood, your nerves - the protective sheath around them, and your DNA. As each thing starts to mend, it has a knock on effect on each part of your body that has been running on empty.

Now you have started on injections, do take a good folic acid supplement and eat a diet full of good proteins, good fats - wild fish, nuts avocados, olive oil, grass fed meat, vegetables and minerals, as your body has a lot of rebuilding to do. B12 works hand in hand with folic acid. Sunshine is important too, Vitamin D.

Take it gently. Only do as much gentle exercise as you can bare. Sleep is very important for healing. Stress is bad for healing.

The NHS runs on NICE guidelines. Be aware many of us are taking more B12 than we are allowed by our GPs. You can't overdose, as it's a water soluble Vitamin, you just pee out excess.

You do need to know why you are deficient. This effects your treatment plan. Sublingual doses and tablets may not be absorbed at all. Injections are the surest way of getting this essential nutrient. GPs don't get very good training on Pernicious Anemia. Join the Pernicious Anemia society to get lots of information.

B12 is detached from food in the stomach thanks to intrinsic factor and is absorbed in the ileum, the last part of the small intestine. Both these areas can be affected by autoimmune attack and surgery. The body normally recycles B12 via the liver and bile duct. But if it can't be reabsorbed in the ileum the cycle fails. No current test is 100% accurate.

So you will improve. If it's hurting it's your nerves mending. All the best.

[Peacelily24 in reply to Oneash]

Thank you so much Oneash for the very comprehensive overview. Yes, I’ll fight to stay on injections until I have no more symptoms.

I forgot to mention that my IF was negative. I have to go back next week to test for b1, b6, folate and calprotectine to check if there’s something wrong with my gut.

I’ll keep updating this thread with my progress.

P.S. I’m in my mid-thirties and I eat plenty of fish, meat, eggs and cheese. Also, I have a very good and balanced diet.

[Nackapan in reply to Peacelily24]

Obviously a absorbton problem.You do knis hopefully 40-60 % yltrsting negative for PA may actually have it!

I also felt extremely ill on loading b1e injections.

The day after in bed with a migraine.

It was tough.

After loafing i was supposed to wait 3 months

I went back on EOD after 5 weeks .

I tried sublingual in that time.

Did nothing for me.

It does get better

[Oneash in reply to Peacelily24]

Intrinsic factor antibodies are negative in 1 in 20 people. Don't let them fob you off with that one. Pins and needles is neuropathy.

I eat a lot of leafy greens, but the folic acid pill still makes a difference.

Ask them how else can your B12 be low, if it's not PA?

[Peacelily24 in reply to Oneash]

Update:

B1, b6 and folic acid all normal. They also checked for IBS/IBD and h. Pylori and tests were negative.

I will deffo ask the question Oneash 😉 thanks a ton!

[Veraveg]

hi

I had the same effect when having shots, my arms hurt so much and was literally wiped out. I was like a zombie.. Once I had all loading doses, it took a while to feel better still not 100% but have read on here it can take up to a year to get back to where you were.

Hope you feel better soon

[eclilley]

I agree with all this advice.

But would also add in - Look at your ferritin (ask for a full iron panel too if they are doing another blood test, if they didn't do it already).

And more than likely would benefit from taking an iron supplement - whether Spatone in juice, or a gentle iron tablet such as ferrous bisglycinate - at least.

Your iron levels will almost certainly be dropping somewhat as the B12 enables your body to utilise your ferritin store and make fresh healthy blood cells (in very basic terms, from how I understand it).

It was this that made me feel absolutely awful very soon after my loading doses. They hadn't told me that my ferritin was only at 17 before I started the loading jabs, I had no idea of the importance and only worked it out a few months later when trying to work out what was still wrong. I'm still trying to up it.

Also, potassium is really important to keep at good levels.

Also, don't let them stop injections. It might be a battle, but try...

[bookish in reply to eclilley]

Thanks for the ferritin prompt - part way through loading and iron has always been an issue so just went and took two Spatone. I keep forgetting...

[eclilley in reply to bookish]

I know the feeling. I am terrible at remembering the plethora of supplements etc, even knowing that they help.

I am thankful I have an oestrogen patch for HRT, but dreading the possibility of having to go to the gel - will then have to remember to do it daily 😖 !

[ktwing]

Just to add to what others have said, you can ask for injections in the hip, I find this much less painful than the arm! Keep going, it's worth it 😊

[GalDriver]

I have secondary progressive multiple sclerosis, no mention of PA but who knows? I think there are a few conditions involving low B12. B12 self-injections helps massively. Went from barely living, so weary, to still crocked and get MS fatigue but brain power has restored and mood is, obviously, lifted. Good luck. x

[bookish in reply to GalDriver]

Really good to hear that the injections are helping you. I agree that B12 is far more commonly low than realised, and as this disrupts DNA and cell metabolism (and therefore makes it far more likely that our epigenetic vulnerabilities become actual, with a host of health ramifications), it would be really helpful if it were at least included in the basic full blood count......Best wishes to you.