So Fed Up!

[Leeja]

My first blood test result was 75, I have had the 5 shots and it went up to 520 in April. I recently started feeling tired, hair thinning and not sleeping my GP has reluctantly done further investigations and it has dropped to 275, still within the safe range so he has given me sleeping tablets to help me sleep in the hope I will feel better?? the drop has been quickly and my concern is they will wait until its 75 again any suggestions?

[Gambit62 Administrator]

see if you can educate your GP about how B12 really works and the limitations of the serum B12 test.

Treatment should be based on symptoms not on serum B12 levels. There is no 'safe' range. There is a statistically normalised range where the majority of people (who haven't been treated with a B12 injection) will be okay but serum B12 isn't a gold standard test and will miss 25% of people who are B12 deficient (and pick up 5% who aren't) if used as a single measure. Injections introduce factors that mean that the statistically normal range really can't be applied anymore. Amongst other things there is the possibility of a reaction to high serum B12 levels that actually stops B12 moving from blood to cells leaving you without B12 where it really counts at the cell level - this can be treated very effectively by keeping B12 levels high enough to beat the reaction (like having water levels behind a dam so high that enough water trickles over the top of the dam).

You really need more frequent B12 shots.

Refering your GP to this area of the PAS website which is specifically aimed at helping GPs understand diagnosis and treatment of PA/B12 absorption problems may help

pernicious-anaemia-society....

[Sleepybunny]

Hi,,

I've assumed you're in UK. Some info will not apply if you're elsewhere.

My experience, I'm in UK, was that some UK doctors are not as well-informed as I would expect about B12 deficiency. I'd suggest reading up about B12 before next appt.

What does GP think is causing your low B12?

Do you eat a diet with plenty of B12 rich foods eg meat, fish, shellfish, dairy and eggs?

If yes, then it becomes less likely the cause of low B12 is diet and more likely there is an absorption problem eg PA

Risk factors for PA (Pernicious Anaemia) and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had an Intrinsic Factor Antibody (IFA) test?

IFA test can help to diagnose Pernicious Anaemia but test is not always reliable and it is still possible to have PA even if IFA results are normal/negative.

I'd suggest reading the following UK B12 articles/documents

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA (Pernicious Anaemia) and Antibody Negative PA can be diagnosed in UK. It also makes it clear that people who are symptomatic for B12 deficiency should have an IFA test whether B12 is low or within range.

If you're in UK, has your GP seen this flowchart?

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises the importance of treating people who are symptomatic for B12 deficiency even if B12 results are within normal range in order to prevent neurological damage.

I gave a copy of BMJ article to my GP.

3) BNF British National Formulary Chapter 9 Section 1.2

All UK GPs will have access to BNF. Probably a copy on their desk.

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

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

Gives details of UK B12 treatment. UK B12 treatment info is also in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

"result was 75, I have had the 5 shots and it went up to 520 in April.....my GP has reluctantly done further investigations ....dropped to 275, still within the safe range"

I'm puzzled as to why you only had 5 loading injections if you're in UK as BNF specifies 6 loading injections for those without neuro symptoms followed by injections every 3 months.

For those with B12 deficiency with neuro symptoms (UK) then it's loading injections every other day for as long as symptoms continue to get better then injections every 2 months.

Do you have any neuro symptoms? See Symptoms lists below

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes to neuro symptoms, I'm unsure as to why you are not on UK neurological treatment regime for B12 Deficiency.

Untreated or under-treated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.

PAS news item about neurological consequences of PA

pernicious-anaemia-society....

B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

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

If you suspect PA is a possibility, it may be worth joining PAS.

PAS members can access info and support.

B12 blogs

There may be stories that are relevant to you on Martyn Hooper's blog about PA and B12 issues.

martynhooper.com/

There is also an interesting blog about B12 issues on "B12 Deficiency Info" website.

Unhappy with treatment?

Link below about writing letters to GP about B12 deficiency.

Point 1 is about undertreatment of neurological symptoms. Point 5 is about being symptomatic with normal range B12 results.

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Blood Tests

Do you get copies of all your blood test results?

I learnt to after being told everything was normal and then finding abnormal and borderline results on copies.

Access to Medical Records (UK info)

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

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

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

In relation to B12, I look at B12, folate, ferritin and full blood count.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

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

[Leeja in reply to Sleepybunny]

Thanks for your reply, I eat a healthy diet very high protein and lots of green veg. The GP gave me a supplement at first before the injections. I did see my results and they were all to left of the page? My eyes are sore but the GP gave me visco tears ? I am going to see a different GP on the 18th so will take this info with me.

[Sleepybunny in reply to Leeja]

"I did see my results"

Might be wise to get paper copies of your results so you can look at them whenever you want to.

Some UK GP surgeries offer online access to a summary of medical records/results but this is just a summary and may not have all info you need.

[Dewbuc]

There is no safe range as neurological symptoms can and do occur at levels of around 400! B12 injections are not just a quick fix, they are forever, just like puppies are not just for a Christmas.

You need to go back to your GP with a concise summary of the main recommendations contained in the guidelines produced by the British Society for Standards in Haematology in 2014. They are easily found as an appendix in Martin Hooper's book.

Faced with this highly reputable information he should initiate the correct treatment based on your symptoms. He is supposed to be treating patients not blood tests!

[Sleepybunny]

Hi,

Dewbuc makes the point about there being no safe range.

I had many neurological symptoms of B12 deficiency including pins and needles, tingling, tinnitus, muscle twitches, periodic limb movements, nominal aphasia (not being able to find words), unsteadiness, proprioception problems, memory problems plus others, with B12 results that were between 300 and 400ng plus.

I'd suggest taking someone with you for support at next appt. Even better if they have read up about B12 deficiency and are willing to speak up on your behalf. My personal opinion is that doctors are sometimes kinder when a witness is present.

I gave a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my GPs.

Have you had any B12 injections since the 5 loading injections?

[Dewbuc in reply to Sleepybunny]

Absolutely and you are not alone in having symptoms with a level of 400-500. I hope you're better now.

I agree it's good to take a friend!

[Leeja in reply to Sleepybunny]

Hi, I had the 5 every other day injections then was told to take the supplements. I take lansoprazole and have been told this could be why I don't absorb it.

[Sleepybunny in reply to Leeja]

"I take lansoprazole and have been told this could be why I don't absorb it"

Taking a PPI drug can impact on B12 levels but there are other reasons for B12 deficiency. Have a look at links for risk factors in my first post on this thread.

I can't understand why you appear not to have had an Intrinsic Factor Antibody test.

Why are you taking lansoprazole?

Has GP diagnosed you with high stomach acid?

The symptoms of low stomach acid are very similar to those of high stomach acid. Both conditions can cause acid reflux.

Has GP excluded the possibility of low stomach acid?

PA (Pernicious Anaemia) can cause gastritis which means the stomach does not produce enough acid.

drmyhill.co.uk/wiki/hypochl...

patient.info/doctor/pernici... see 2nd paragraph

[Leeja]

The GP said it would help regulate my sleep pattern, needless to say I haven't taken them!

[Dewbuc]

That seems totally illogical. Loading dose in recognition of the problem but no recognition that it's a problem for life. Stupid.

[Sleepybunny in reply to Dewbuc]

I had one set of loading injections when my b12 level was below 140ng and then nothing because my levels rose to 300 plus.

It was not a dietary deficiency because I was eating B12 rich diet. IFA Intrinsic Factor Antibody test was negative and at that time (it was before 2014 when BSH Cobalamin and Folate Guidelines was published) there was no recognition of the possibility of Antibody Negative Pernicious Anaemia.

I'm not sure Leeja has even had an Intrinsic Factor Antibody test.

So I obviously had an absorption problem, one set of loading injections and then basically goodbye......despite virtually all symptoms remaining.

[Dewbuc]

That is barking mad. If you have a problem you need a loading dose and lifelong follow up.

[Sleepybunny]

Hi again Leeja,

If you are in Gloucestershire, there is a local PAS support group in Gloucestershire. These PAS support groups can be a good source of info on helpful doctors etc.

pernicious-anaemia-society....

People need to be PAS members to access details about PAS support groups.

pernicious-anaemia-society....

[Leeja in reply to Sleepybunny]

I'm in the East riding area but wiĺ have a look around

[Dewbuc]

My niece had a B12 level of 95 but was diagnosed by a facio- maxillary surgeon after briefly looking at her tongue. GP prescribed 150 mcgs daily by mouth! At my insistence she has gone back to the GP and is now having antibodies checked and is startinginjections of B12. Let's hope they get it right now.

Her mother for an unexplained and unknown reason has been on 50 mcgs daily by mouth for many years! She is going to have her level checked at my instigation.

My elderly brother was encouraged by me to have his level checked. The GP is doing so, but apparently he had a low level on a blood test a year ago and was given a prescription with no explanation and follow up!

With four generations of my family affected, unbelievable exhaustion, paraesthesiae in my feet and a B12level of 300 I suggested injections were indicated. My GP wanted to give 150mcgs daily by mouth after consulting with colleagues at the practice because that had allegedly been proved to be as effective as injections! After my objections based on lack of evidence for this view the dose was raised to 1000mcgs daily. I am now self injecting every other day until symptoms improve and will continue supplements for life.

My son had a level of 90 with footdrop and paraesthesiae in his feet. He was diagnosed with Folate deficiency, but no mention of B12 until I raised the issue with his GP who prescribed 1000mcgs by mouth daily to be reviewed in 2 months.

Frankly as a doctor I wouldn't have believed such a catalogue of errors if I hadn't had experienced it myself and heard the horror stories on this forum. You couldn't make it up!