Better Levels 8 Weeks On

[Dogwalker123]

So I posted about my 15 year old with a reading of 80 a while back, we had loading dose of 6 injections. 8 weeks on we have just had a reading of 440, she is so much better now! My question is will this maintain itself at this number until her next injection in 4/5 weeks time or could it drop?

[JanD236]

Once injections have started, guidelines suggest that no further blood tests should be carried out on B12 levels. What is now important is how your son or daughter feels and whether or not the symptoms are being kept at bay. If not, further/ more frequent injections are needed.

[Cherylclaire Forum Support]

Does she have any neurological symptoms ? She seems to have been put onto a non-neurological frequency and regime (ie: 6 loading injections then maintenance injections every 3 months).

Glad your daughter has been feeling so much better- not anything I'd have wanted to go through at 15, so hats off to her ! Like Jan said really: numbers aren't the story, symptoms are. The aim being that injections should be able to maintain levels to prevent return of alleviated symptoms. If symptoms return, go back.

You can find out more about this condition from the Pernicious Anaemia Society on their website. There are no medical guidelines specifically for cases involving children : learnt that from Martyn Hooper, founder of the PAS, only last week. Sad that these are necessary - must make it hard for GPs presented with young patients with B12 deficiency.

Good news that there are very positive initial recovery signs. Wish you both well.

[Dogwalker123 in reply to Cherylclaire]

We do have an appointment to see a neurologist, she did have terrible wobbly vertigo moments and after injections had a tremor but the last week has seen such an improvement. Also she was extremely bad with panic attacks but the doctor allowed her citalopram and I think this is helping!

[Cherylclaire Forum Support in reply to Dogwalker123]

Must have been very frightening for you both. I'm glad she is showing signs of effective treatment. Go back if you are worried about anything. Difficult times to get to a GP, but seems like you have done well.

Anything at all of concern to either of you, there are always good people around on this forum to help. They certainly helped me.

[Dogwalker123 in reply to Cherylclaire]

Yes the gp was very understanding and most of the info I had I gathered from this amazing forum!

[Foggyme Administrator]

Dogsalker123. Just dipping in quickly to say...a B12 level of 440 following loading doses is very low. Most would see a level well over the reference range (mine is always over 2000).

As others have said...once injections have commenced, efficacy of treatment can only be monitored by presence or absence of symptoms. If your daughters symptoms have not gone or return before the next injections is due, then she needs more frequent injections. So best to closely monitor her symptoms 😉.

If she had neurological symptoms (and it sounds like she did) she should be continued on every other day injections until symptom stop improving - this can take many months.

Also worth noting that B12 deficiency can cause anxiety (and panic attacks), so it may well be the B12 that is causing improvements In the panic attacks, rather than the citalopram. GP's don't always realise the range of symptoms (especially neurological ones) that B12 deficiency can cause - worth asking your GP to review whether the citalopram is necessary once your daughters symptoms have stabilised (no point in taking if the B12 is doing the trick).

Really pleased that she's responding to treatment. Good luck with the neurologist (please keep in mind that many don't know much about B12 deficiency or it’s treatment - though some do - so sincerely hope you get one of them).

[Dogwalker123 in reply to Foggyme]

Thank you for the advice, yes keeping a close eye on the way she’s actually feeling, I keep a calendar of symptoms so I can try and monitor any changes in case they start before the 12 weeks top up. I was so shocked at just how poorly she had become as when she started out her levels were 80 and she could hardly walk. This forum has been incredible for advice and support.

[Foggyme Administrator in reply to Dogwalker123]

No problem...according to all treatment guidelines, because of her neurological symptoms, she should have been continued on every other day injections, so best keep a very careful eye on any reappearance of those (they can be quite sneaky and she may not think to report them to you - may not even be fully aware that some of what she's feeling IS a neurological symptom.

If you discover that she does need more frequently injections and your GP is not aware that these are appropriate, post again and we can point you in the direction of the relevant guidelines so that you can share those with your GP.

Good luck to you both x

[30143014 in reply to Foggyme]

Having bad b12 levels myself lots of problems high anxiety not sleeping have to take trazadone seeing if that helps.Really frustrated right now glad your daughter is getting better

[Ryaan]

I assume you’ve had her blood tested for other deficiencies such as Iron, Folate, Vitamin D etc which is very important as deficiencies can cause many problems. It’s usually one blood test should cover all.

As many stated just keep note of the symptoms and see how it goes until the next injection. Most likely she will need further injections which is not a big deal.

You’ve had much better advice from others to follow as there’s some great people on the forum.

It took me 12-16 weeks of one injection a week before I noticed a big improvement when my levels were about 180

Maybe nothing new from me but It’s nice to hear she’s doing much better and I hope things continue to get better for you and your daughter.

👍

[Emmers5]

So glad your daughter is feeling some improvement!

Keep in mind I am not a doctor and this is just my opinion but...

I'd like to sound the alarm for everyone with a b12 deficiency regarding antidepressants and other psychological medications. I was ignored by my dr and then under treated for years. They kept telling me I didn't need additional B12. When I finally increased to weekly injections the anxiety attacks, depression, exhaustion and sleep disturbances disappeared. It might just be B12 and not another disorder. I could easily have been prescribed any number of rx from a psychiatrist but luckily I never admitted any of those symptoms.

[LauraJane2]

I’d also like to back up the other comments about the links between low B12 and anxiety/panic attacks. I also had this and the B12 injections resolved it and I’ve always thought it was scary that I could have ended up on unnecessary medications with possible side effects if I hadn’t found out the link myself.

Vertigo is also one of my key symptoms when my B12 gets too low so your daughter has my sympathy there, it’s really horrible. Mine unfortunately does return if the injections aren’t frequent enough so do push for more injections if necessary.

80 is really a very low level, no wonder she was so ill, poor thing!

[Sleepybunny]

Hi,

Good to read that your daughter has improved.

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms present.

b12deficiency.info/b12-writ...

If they're not giving her the recommended level of treatment, I don't think they should get away with it .

See links below which outline two patterns of treatment. One for those without neuro symptoms and one for those WITH neuro symptoms.

Her GP may not be aware that there is a different pattern of treatment for those with neuro symptoms so you may need to politely point it out to them.

Both patterns of treatment allow for maintenance injections every 2 months.

BNF Hydroxycobalamin

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

BNF Hydroxycobalamin for Children

bnfc.nice.org.uk/drug/hydro...

I read on another thread you started that she had negative results in test for PA (Intrinsic Factor Antibody test).

Might be worth passing info to GP about Antibody Negative PA. See link below.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Local Guidelines

Suggest you track down the local guidelines on treating B12 deficiency for your CCG/Health board as you could be in a part of UK that has out of date local guidelines. Compare them with BNF and BSH links.

I think it's worth finding out the exact cause of B12 deficiency if possible (although some never do).

Has the GP ever stated what they think the cause of her B12 deficiency is?

Do they think it is her diet?

Was she ever tested for Coeliac disease?

NICE guidelines Coeliac Disease

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

Strict adherence to a gluten free diet in coeliac patients may allow gut to heal enough so that absorption of B12 in the gut improves.

A confirmed diagnosis of PA or Antibody Negative PA (always get proof of diagnosis) means that if injections are stopped in future ( sadly it does happen) then she'll be better able to fight for reinstatement of injections as PA requires treatment for life and PAS can support those with PA.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

If B12 deficiency is due to fish tapeworm (or other internal parasites) then there are medicines that can treat the infection and B12 absorption in the gut is likely to improve.

More B12 info in my replies on the the thread below eg symptoms, causes, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I am not medically trained.