Loading dose now complete and...drum roll

[Onefish]

Last of the 6 jabs was two days ago. I've had some "standard" improvements and some unexpected ones.

First thing I noticed was that the half moons on my fingernails started to reappear (they've been missing for ages). Mainly my thumbs but they're coming back on a couple of other digits as well. Sadly the skin under my nails remains discoloured in patches but I'm keeping my hopes up.

The burning sensation on my shins - seems to have gone. Completely. I'm cautious about this as it's only been a few days but, even so...

Tingling in my feet, fingers and face - it's softer, like it's been dampened. I hope it dampens completely and shoves off!

I developed a weird rash on my back last September. I've never had this before. Cleaned my bedsheets more often, started using a loofah in the shower, you name it, I tried it. Was still there two weeks ago and I'd kind of given up.

Well, that's fading as well - and I'd heard B12 gave you spots not took 'em away!

Libido, well, it's gone from completely non existent to barely alive which isn't great but hey ho.

On the down side, I'm getting constipated - an ongoing problem for me all my life but I've had it under control this year with lots and lots of water, prunes and millet on my porridge. It's been bliss. Well that aint working anymore, so that's a bit of a shame.

And my insomnia is worse. Was really hoping for an improvement there.

Brain fog, no change. Sad about that as it's the most troubling symptom. If that could improve I'd be so happy, but looks like it's not happened.

Overall though, I clearly needed those jabs.

[wedgewood]

It’s still early days Onefish !

Think how long you have been deficient . You have made such good progress in a very short time ! I would inject every other day until no more improvement . Then as often as required to keep the status quo .

[Onefish in reply to wedgewood]

It's crazy that I was within normal range (230 - and had to go to 197 before the GP perked up) and wasn't suffering anywhere near as much as lots of people on this forum. And, honestly, a lot of my symptoms mimic those of menopause (especially the burning legs and brain fog). It's easy to write this off for women my age. But my HRT works, I get my bloods checked regularly, my oestrogen is at a good level. I knew it wasn't that. Menopause really does confound things and I'm just lucky that I see a specialist for that who is diligent about keeping on top of blood levels. That's just not true for most women, sadly.

Also would point out that my GP is really nice as well! She's always happy to defer to a specialist even if I've gone and found one myself and paid for it - I know some docs that don't like you doing that. But she was working within the guidelines she had until the number (not the symptoms) indicated otherwise. It's very frustrating.

[Realtiger in reply to Onefish]

So sympathise with all you have said. I find myself in a similar boat - had been waiting for my B12 levels to drop enough for my GP to take note. Now its below range at 184 I’m awaiting further tests for PA. It’s great that you’re already noticing the benefits of the treatment!

[Sleepybunny]

Hi,

It's good to know you're seeing some improvements.

If you've been ill a long time you may see gradual improvement over a long period.

I improved for 8 years running after treatment started.

I need far more B12 than NHS allows so also treat myself.

I hope you're getting enough B12.

Link below outlines recommended treatment for B12 deficiency in UK.

You have mentioned neuro symptoms such as burning sensations and tingling so I would expect you to be on the treatment pattern "For people with neurological involvement".

cks.nice.org.uk/topics/anae...

Might be a good idea to keep a symptoms diary.

Track up to 10 symptoms and score their severity either daily or weekly. It can be hard to see day to day improvement but easier if you compare month to month or year to year.

A symptoms diary can be useful evidence of improvement or deterioration to show your doctors.

[Onefish in reply to Sleepybunny]

Oh thank you, that's a really good idea. I do this for my rosacea - had photos taken at the start of IPL treatment and was recently moaning about how the colder weather had triggered it. Looked back at how it was and really see the difference - it's easy to forget if it's not documented - should definitely do this for the B12.

[Realtiger in reply to Onefish]

Also have rosacea and was wondering about IPL. On a bad/cold day I feel I look like Rudolph as my nose is noticeably redder than the rest of my face. Are you seeing positive results with this too? Have so many tiny thread veins that I can’t imagine how it will work.

[Permexpi]

I don't know if you take magnesium but I've found that it works for me for brain fog (magnesium threonate) and relaxation/sleep (magnesium glycinate) and some other types can be useful for constipation.

[Onefish in reply to Permexpi]

I was taking magnesium - I've got a massive bottle of threonate in the kitchen and also have citrate (which is good for constipation). I stopped taking it as i wasn't sure if I should continue or not whilst tanking up on B12 and vit D. I'm popping folate as well. I rattle when I walk

[Permexpi]

I am also in the stage just after B12 loading doses and am taking Vitamin D, K, B12 and multi-vitamin via spray and magnesium capsules which I open and mix with tahini and honey (yum). So I don't rattle!

[Onefish in reply to Permexpi]

Oooh, tahini and honey!

[Hockey_player]

If you still have some tingles, should you not continue loading doses every other day?

[totallyFrustrated]

so glad to hear you are feeling better on so many levels, and I too think that the fortnight loading dose should be repeated until there is no further improvement, it does say that in the NICE rules, but some GPs.....

If you stopped taking Magnesium that you were taking, that alone can account for insomnia getting worse and also for the constipation. B12 makes constipation worse, but not nearly as much as lack of magnesium. I am at the same stage, took my eleventh S/I of EOD yesterday and did the same thing with MG I will be going back to taking it, and possibly a tiny bit more than before, as B12 makes your body work better and repair itself and for that it also needs Magnesium. I am looking for evidence that the mechanism of B12 causing constipation is by using up more Magnesium and that is how it's caused. Found some literature, but am looking for evidence based from scientific sources, before I put out any links here.

Keep looking ahead, it took you a long time to get so poorly, it will take a while to get better, but every day is better than the previous one.......

[Orchard33]

Very glad to hear of your improvements. I think brain fog and things like dizziness are more to do with the central nervous system and may take longer to improve.

[Suesue246]

Can I ask what is the significance of the half moons under the fingernails? It's made me look at my own nails and got me wondering.

[HeartyGilly]

you need to continue the alternate day injection ‘until there is no further improvement’ as per the NICE guidelines, so I hope they are continuing.

[Darkvarnish9 in reply to HeartyGilly]

Look up the Nice guide lines and send them to your Dr. I did today. I am fed up with them not knowing anything about B12. I also pointed out the main changes to save her time. They wanted to send me for another heart scan, after the first came back as nothing wrong with my heart. Wait another year, to find out there is still, nothing wrong with my heart and it is still B12 that is the problem.Funnily my Doctor booked an appointment to see me after I sent the 41 page report of Nice to her. I couldn't get an appointment before.

I am so annoyed that my next move will be to contact my MP or whoever you can complain to about the NHS. Because this is ridiculous!

[WiscGuy]

"The burning sensation on my shins - seems to have gone."

I have been injecting B12 daily since August 2021, and I am still regaining nerve function, most noticeably in my feet, so apparently nerve repair and perhaps nerve regeneration are still occurring; along with that are occasional periods (commonly 2-3 days) of sudden recurring pain in feet, legs, etc. That is my experience, so others might experience similar things.

One of my more limiting symptoms has been brain fog, varying in intensity and frequency, something like a week or two of brain fog, often accompanied by headache, and a week or two of varied remission. There was slow improvement over a long period of time, but limitations were about the same. However, a couple of months ago, brain fog and headache largely cleared. I do still have periods of several days now and then of feeling generally ill, with fatigue, fogginess, aches, etc. But it was a sudden big improvement. So keep plugging, don't give up. Especially pay no attention to doctors who proclaim nerve damage to be permanent. They have no way of knowing that. Research that has been conducted is of low quality, especially in terms of treatment intensity and duration. So, at best, all the medical world knows is that people who have endured prolonged B12 deficiency don't do well if they are untreated or undertreated. And even that is a vague treatment, because nothing is known of optimal treatment for nerve repair or nerve regeneration in terms of dose size or frequency.

[WiscGuy]

Sorry, when I responded earlier I intended to comment on constipation but spaced it out.

Atrophic gastritis, resulting from an autoimmune attack on the stomach, is commonly intertwined in the etiology of B12 deficiency. I myself began to experience abdominal pain in the mid-2000s, which I assume were associated in some way with my eventual diagnosis of B12 deficiency. By the 2010s I cycled regularly from diarrhea to constipation and back, with continued abdominal upset. About a year or so ago, a gastroenterologist suggested that I try supplemental fiber, which I did, and it seemed to help quite a bit (though I was injecting B12 daily, which I am still doing, which might also have had impact on GI tract improvement). I continue to supplement fiber, 12 grams daily, in two 6-gram doses, one usually in early afternoon and the other late afternoon. I think the fiber has lessened the extremes of swings between diarrhea and constipation, and life is much better without the extremes.