Is my case severe or should I not be so worried?

[EmmieEther]

Hello, I'm am 21yrs and a week ago I was diagnosed with pernicious anaemia. My b12 results came back at 87. I've been having lots of problems with my back, but now the pain can be extremely painful, usually down one side of my spine and in my chest (feels like the pains coming from my heart). I've had serious mental health problems resulting in having to go to a psychiatric hospital for a short period of time. My symptoms have been there for as long as I can remember, I just thought it was normal to feel this way, but the symptoms have gotten a lot worse over the time, such as extreme tiredness (due to not being able to sleep), no energy, constant headaches, tingling througout body, memory loss to the point where I forget my own room when I wake up or forget where I'm going when I'm walking. Burning sensation down my legs, clumsy and very unbalanced, heart palpitations and the list goes on :(.. can anyone tell me if my case is severe or nothing to worry too much about and is just a part of pernicious anaemia please, thank you x

[fbirder]

A lot of your symptoms can be explained by a B12 deficiency. Your blood levels are very low and, if they've been that low for some time, it's no surprise that the symptoms are fairly severe.

The good new is that most of them should improve dramatically once you start having injections. Make sure you are started on the regimen recommended for patients with PA with neurological symptoms (the tingling, burning, memory loss, mood change are all neurological). That regimen is, assuming you're in the UK, -

Loading doses, 1000 ug injections three times per week until the symptoms are no longer improving. The situation should be assessed after three weeks. If there is continuing improvement then the loading doses should be continued. After that it's 1000 ug every 8 weeks for the rest of your life.

You should start seeing an improvement in the fatigue and mood within a couple of weeks. Other symptoms may take longer to fix. Some (those due to nerve damage in particular) may be irreversible. If there are still problems after a few months then ask to be referred to a neurologist.

Once you've started the course of injections it would be a good idea to take some other supplements. 400 ug a day of folic acid is the most important.

Good luck.

[Sleepybunny]

Hi,

It might be helpful to talk to the PAS (Pernicious Anaemia Society). Membership costs are due to increase soon.

pernicious-anaemia-society....

PAS tel no 01656 769 717

UK B12 websites

martynhooper.com/

b12deficiency.info/

b12d.org

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

UK B12 treatment

1)patient.info/doctor/pernici...

See Management section in above link.

2) BCSH Cobalamin and Folate Guidelines page 8

[Hillwoman]

With that result, no wonder you've been so ill. As fbirder says, things should begin to look up now, but I'm afraid you will have to be vigilant with regard to correct treatment. You may have to be forceful about this, which isn't easy when you're feeling so rough. Let us know how you get on.

[Gambit62 Administrator]

The range of symptoms is a measure of the severity of the deficiency. Your levels were very low so you were very deficient.

Hopefully things are starting to improve - though it can take a while and it isn't uncommon for things like aches and pains to get worse before they get better.

Make sure you are being given the correct loading regime. Maintenance is another matter. I didn't actually start to get better until I started treating myself with really large doses (was still getting worse with the normal treatment) as there are things that can go wrong processing B12 even when you have a lot sloshing around in your blood - but that doesn't affect everyone and it should become clear if that is the case for you when you move from loading to maintenance.

It can be useful to keep a diary of your symptoms and note how they change.

[LeanneN]

Hi EmmieEther,

I was in a very similar situation myself earlier this year with a B12 level of 88 and balance problems, walking issues, memory loss, other neurological issues and severe mental health issues periodically (usually within a few weeks of very strictly dieting which I think dropped my B12 levels even lower). I had 6 loading doses and was surprised at the difference they made and then put on 3 monthly injections. However reading about B12 on this and other sites I decided to not leave my B12 in my doctors hands alone since, as many posts here point out, they are woefully undereducated particularly in the mental health effects of B12 def. So I immediately got several bottles of Solgar and Jarrow 5000 B12 sublingual tablets and took several a day every day for several weeks. The difference was very noticeable and my balance came back, walking improved. Tiredness began to ease after 3 months.

I've recently gone a step further and now give myself B12 injection and the improvement has been dramatic. There are however issues with this as doctors will seriously frown on this form of self treatment and deemed as another factor of mental health deterioration. So I would suggest taking the sublingual tablets until you are significantly improved as there is no harm in sublingual tablets. I hope you see improvements but it does take a couple of months.

As an aside the co-factors also made a big difference to me after starting B12. By taking gentle iron tablets along with metafolin, vitamin c with zinc, and magnesium a couple of weeks after starting B12 injections caused a huge improvement in sleep and concentration.

Wishing you all the best