B12 loading dose done, still feeling symptoms

[Dee215]

I have recently been diagnosed with deficient b12 and ferritin following a blood test, and the GP has put me on oral iron and b12 injections. I have had six injections over a two week period, the last one was on Wednesday. I felt great whilst having them, stronger than I have for months and it was so good to be able to do things and enjoy doing them, but now the fatigue is returning and I am having quite frequent spells of dizziness, especially when getting up from sitting. I am gutted about this, I thought I was 'cured'. The next injection is on 1 November. Do I need to take an oral supplement too?

[clivealive Forum Support]

No Dee215 if you are still having neurological symptoms you should go back to your doctor and ask that the loading doses should be continued "until there is no further improvement" in accordance with the N.I.C.E (and B.N.F.) guidelines.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Scenario: Management" and scroll down.

Do you know whether your Folate level was tested?

O am not a medically trained person but have had P.A. (a form of B12 deficiency) for more than 45 years.

[Dee215 in reply to clivealive]

Thank you, that's really useful. What are neurological symptoms? Is it the Tinnitus, dizziness on standing, vision problems, brain fog? I wasn't experiencing those symptoms during the two weeks I was having the injections but they have returned now. Should I go and ask them to continue with the injections? It's so hard to do that, they don't listen to me, they just think I am neurotic and depressed and keep trying to give me diazepam. It's horrible

[clivealive Forum Support in reply to Dee215]

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

[Dee215 in reply to clivealive]

I have spoken to the GP on the phone just now, I told her what was happening, what my symptoms are, as follows:

fatigue, feeling totally drained

brain fog, inability to remember the names of things etc

dizziness on standing, and especially when walking up and down stairs

constant headache (2 days now)

stomach pain (am taking iron tablets but was tolerating them much better when having the injections)

tingling in hands

very low mood

heart "flutters" can't think of any other way to describe it, like extra beats every now and then. Mostly when lying down

deafening tinnitus

vision problems, difficulty focussing, sensitive to bright light, floaters

Bearing in mind the GP hasn't even seen me, she just saw the results of the private blood test I had, she immediately said "Well it's not the B12, you have had the loading dose, it wouldn't go down again like that." How does she know? She hasn't even seen me. I am gutted, so upset and so low, they are not even listening to me. I know why, because they think I am depressed, neurotic, whatever. I feel totally powerless. I don't want messing about with, I just want to feel better. I am currently unable to drive, having had a seizure during the night. I had an MRI scan on my head, which was horrible. Not heard anything back from that, I don't want them messing about with me, I just want to feel better, to feel like me again. Please can anyone advise?

[clivealive Forum Support in reply to Dee215]

Did you remember to mention to the doctor that as you are still having neurological symptoms the loading doses should be continued "until there is no further improvement" in accordance with the N.I.C.E (and B.N.F.) guidelines?

I'm confused by what the doctor said "Well it's not the B12, you have had the loading dose, it wouldn't go down again like that." she saw "the results of the private blood test" What tests and when taken were they and did they show a low B12 reading?

Is it possible the doctor didn't know about your thyroid problems which may also be putting you "at risk" of developing a B12 deficiency?

As I suggested before a face to face appointment with a doctor and taking someone with you may be more beneficial than a 'phone call.

Don't give up the fight. I had exactly the same remarks flung in my face six years ago as after having had P.A. for nearly 40 years I noticed a return of neuropathy in the run up to my next (then four weekly) injection. When I asked for more frequent injections my "one size fits all" doctor laughed, said it couldn't be anything to do with the P.A. because I was getting the B12 injected and as the prescription says "every four weeks" every four weeks it must be. I'd lived in ignorance of what it was all about all those years as I never knew anyone else who had P.A. and none of the nurses giving the injections ever asked me how I was coping.

So six years ago I joined the Pernicious Anaemia Society and on their then forum asked "Am I the only person in the world who gets a return of symptoms ......?" and was amazed to find that I was not, I started to learn and the rest is history. I now get my injections every three weeks.

[Dee215 in reply to clivealive]

I had the private blood test to see if I had a thyroid problem. As far as I can tell my thyroid is normal, the blood test came back just low B12 and ferritin. But the previous blood test I had in February, with the gp, showed the same but they didn't tell me and didn't do anything. As I said I have not been seen by the Dr. She said, on the phone this morning, it's not your B12 it wouldn't go down that quickly. But it has. How does she know that? She hasn't checked my blood. She hasn't even seen me. But how can I contest them? They are doctors, I am not. I don't know what to say. I will mention the nice guidelines but they will pooh pooh it like they do everything I say.

[Dee215 in reply to clivealive]

I have to wait three months for the next injection

[Sleepybunny]

Hi,

"recently been diagnosed with deficient b12 "

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

I think your doctors should be trying to find out what is causing your B12 deficiency. Some causes eg PA (Pernicious Anaemia) require lifelong treatment with B12.

Have you asked your GP what they think is causing your B12 deficiency?

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you had an IFA (Intrinsic Factor Antibody) test? This can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA test result is negative.

This flowchart from BSH Cobalamin and Folate Guidelines outlines when PA and Antibody Negative PA can be diagnosed.

stichtingb12tekort.nl/weten...

It's possible if you're in UK, that your GP may not have seen the BSH Cobalamin and Folate Guidelines. I gave my Gps a copy of the bSh CObalamin and Folate Guidelines.

Some areas of UK are using local NHS B12 deficiency guidelines that have not been updated for several years.

Some people on forum get copies of all their blood results or even a complete set of medical records so they can see what has been written in past about their health.

I always get copies of all my blood results. I learnt to do this after being told everything was normal/fine and then finding abnormal and borderline results on the copies.

Access to Test Results/Medical Records (UK info)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

If you have a copy of your B12 result, it may have a comment from the laboratory that carried out the B12 test that an Intrinsic Factor Antibody test should be ordered due to low B12 level. It should then be possible to check if an IFA test was ordered.

PAS (Pernicious Anaemia Society)

If you think PA is a possibility then may be worth you joining PAS. they are helpful and sympathetic but busy and may not have resources to help non-members.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left.

There are stories on Martyn Hooper's blog about how PAS has helped people.

martynhooper.com/

B12 Deficiency with Neurological Symptoms

I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked plus added any not on list.

pernicious-anaemia-society....

Other lists

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK b12 treatment info (including treatment of B12 deficiency with neuro symptoms)

1) BNF British National Formulary Chapter 9 Section 1.2

All UK GPs will have access to copy of BNF. Probably a copy sitting on their desk or bookshelf. IF you have a kind GP they may let you look at their copy. it's also possible to get own copy of BNF from a good bookshop or popular internet retailer.

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

cks.nice.org.uk/anaemia-b12...

2) BSH Cobalamin and Folate Guidelines, treatment info is about a quarter through document.

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

It's vital that someone with B12 deficiency with neuro symptoms gets correct level of treatment otherwise further neurological detrioration may occur.

"six injections over a two week period, the last one was on Wednesday.......The next injection is on 1 November"

The pattern of treatment you describe above reads more like the standard treatment for those with B12 deficiency without neuro symptoms.

In UK, those with B12 deficiency with neuro symptoms are supposed to get loading injections every other day for as long as symptoms continue to get better then it's an injection every 2 months.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

I am not medically trained just someone who has struggled to get a diagnosis.

[Dee215]

Thank you so much for that. Gp doesn't seem interested in why my B12 is deficient, not even going to test again to see if it's better. Can't talk to them, they just give me diazepam because they think I am depressed. I am, but it's because I feel so rubbish all the time. I am in UK and they didn't ask about symptoms, I had a private blood test and took the results in to the surgery, they booked me in to see the nurse for injections, never even saw me.