b12 levels after injections

[BethCam]

I always see on here that testing after starting injections is unnecessary since the number will be high anyway.

I am getting monthly injections, but my B12 has never been over 800 and been falling. It hasbeen under 400 for the last year.

My G.I. doctor said he prefers the level to be over 400 for his pernicious anemia patients. However, I was sent back to family doctor for check ups and injections. My previous family doctor said it should be over five.

I will be seeing a new family doctor in January. I am trying to decide how much emphasis to put on this at my appointment.

I am in the US, so we do not have specific guidelines on pernicious anemia.

[Nackapan]

Main thing is to@ go by symptoms not blood levels. If you feel you need higher frequency because symptoms are returning before next Injection try it ?

[wedgewood]

You are right . In the U.K. ( where I am ,) the guidelines say that testing the b12 levels once injections have started , is totally unnecessary. But the main thing is that the regularity of the injections is sufficient to keep all symptoms of B12 deficiency at bay . Is that the case for you ? There can be no hard and fast rule as to what the level should be. I need an injection once a week . My levels are over 2000 -so off the scale , and that keeps symptoms at bay ( except for an irreversible one which will never go , as treatment cane too late .-another very long story -I won’t bore you with it !)

If you reach a level at which symptoms start returning , thats when you know that you need your injections more regularly .

I must add that i was unable to get the regularity of injections that I needed from our National Health Service b( NHS) so i self inject .

Very best wishes

[mountmuir27 in reply to wedgewood]

Can you share what your irreversible symptom is? I was also diagnosed late and since self injecting have over 2000 levels of B12. I know I need another injection when I start having balance issues. Curious how you assess treatment for help/insight.

[wedgewood in reply to mountmuir27]

Yes - it’s my painful feet and ankles . They feel as though they are burning hot . They were totally numb , but I rescued them from that state when I found out that I could get B12 ampoules from certain German online pharmacies (Hydroxocobalamin ) Later I heard that Methylcobalamin was better . I tried it for a few months , but it made no difference . I need to inject weekly to keep well.

This is 10 years ago , so I now assume that the foot problem is irreversible . It keeps me awake some nights ! 😩!

Best wishes .

[wedgewood in reply to mountmuir27]

Don’t know if I can blame my hearing loss on delayed treatment , Since self injecting , I don’t get the palpitations , which were also ignored . ( I had to go to a private doctor to get the Intrinsic Factor Antibody test which was very positive . )

[mountmuir27 in reply to wedgewood]

Same here. Hearing loss at the age of 42 explained as due to childhod ear infections. Palpatations as well although those coincided with perimenopause/menopause so yet again more delays in diagnosis.

[wedgewood in reply to mountmuir27]

When the hell will “ THEY” see the light ?

I asked the ophthalmologist if he had heard that B12 deficiency could cause hearing problems.He said no, never .

The remarks made by doctors in the medical “ Pulse “ magazine about PA patients needing extra injections , are truly disgraceful and dismissive . Appalling . That’s what we are up against .

[Nackapan in reply to wedgewood]

The dentist very aware B12 deficiency affected your gums and teeth .Tinnitus is common.

Balance issues common

Vertigo common .

I was refused a referral to ENT.

As early on just plodded on .

Then asked again and had a telephone consult 2 yesrs later !

From that ear pressure tests

A hearing test .

The most beneficial thing was a referral l to a physiotherapist specialised in vestibular disorders .

I'd had some very expensive sessions to get me walking but then had to stop as gave days of migraines.

Too

much too soon ??

But self help.

As convinced the epley manoeuvre wasn't done correctly

With the later NHS referral saw the same woman pysiotherapist !!!

She remembered me and saw the improvements .

She coukd see my hard work .

Those sessions the most useful to date .

So yes when will' THEY ' see the light .

Mine could've been 'caught ' 3 years earlier at least .

I knew something wrong.

All I coukd think of was ? iron deficiency.

Dismissed being told the menopause .

Stress, depression.

Menopause my trigger.

No blood test .

Then got a fbc to shut me up I think.

No B12 included .

I wish I knew what I do now.

I keep spreading the word to at least get tested.

I still think very strongly it shoujd be included on basic blood tests.. Have written to a group of surgeries about this issue a few times now .

What's the point of a 50+ well being appointment if B12 not included .

The menopause is a risk factor as si many other things are .

My first ever B12 test was done at the age of 57 after a collapse.

3 missed opportunities ovef 2 years for a simple blood test .

We have so many 'case studies ' that could be added to doctors training !!!

Proper listening skills I was taught for my job.

Why not included for others???

[wedgewood in reply to mountmuir27]

I MEANT AUDIOLOGIST! ( blame B12 d) !

[Sleepybunny]

Hi,

Just wondered if you'd considered joining PAS (Pernicious Anaemia Society).

It's based in UK but has some overseas members.

PAS membership is separate from membership of this forum.

pernicious-anaemia-society....

pernicious-anaemia-society....

There are two PAS support groups in USA.

pernicious-anaemia-society....

Some other B12 websites

B12info.com

b12info.com/

Run by a UK campaigner on B12 deficiency issues.

B12 Awareness

b12awareness.org/

Set up by Sally Pacholok, a US campaigner on B12 deficiency issues.

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/our-e...

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 deficiency"

by Martyn Hooper, former chair of PAS.

"Could it Be b12"

by Sally Pacholok and J.J, Stuart

Sally Pacholok has some online articles and videos about B12 deficiency.

I found a few articles when I searched online for "USA B12 deficiency guidelines".

Help for doctors

1) PAS welcome health professionals from across world. They can join PAS as healthcare affiliate members, no charge for them.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors from across the world who are looking into B12.

club-12.org/

They have regular zoom meetings and have hosted conferences.

3) Good articles to pass to doctors

B. Wolffenbuttel is a doctor who wrote this article for PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

If you search online for " Wolffenbuttel B12 deficiency" it should show articles he wrote for Mayo Clinic in US and for BMJ (British Medical Journal).

4) B12d.org ( a UK charity) organises interesting online talks about B12.

b12d.org/event/

I'm not a health professional.