Help re B12 and folate treatment plea... - Pernicious Anaemi...

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Help re B12 and folate treatment please...

hhelen profile image
11 Replies

i am here supporting my daughter who has been struggling with low B12 and folate for about 18 months.

She was, before diagnosis, very poorly and ended up in hospital age 17 years. Her B12 levels were about 180 and her folate about 1.8.

Despite this she was not treated for the condition until we moved to a different GP practice and our new GP picked it up straight away- started treating her with loading injections and folate then injections every 12 weeks- increased to every 8 weeks then every 4.

She said she thought she had PA even though the intrinsic factor test came back negative. My husbands aunt had PA with difficulty controlling her folate levels too.

Daughter has a good diet and is not vegan.

My daughter has beeen on 4 weekly regime for B12 jabs for a few months, though she is getting symptoms (fatigue, pins and needles and sore legs primarily) after 3 weeks.

The GP told her to leave off folate for a while and see how she went. On 5mg a day, folate got to 18mg after 2/3 months.

However, after stopping it for 9 weeks, level was low again at 2.6)

More problems have followed, as the GP(who was very supportive) has retired!

New GP said she needs a boost of folate but no more B12 jabs as B12 is 2000.

We have a meeting next week with the GP who is a new partner, but I get the feeling that he does not want to offer any further injections (we have everything ready to SI if not).

The only other thing high on blood test was prolactin at 644, which GP wanted to do after asking about family health- my husband had a pituitary tumour before daughter was born, but I’m not sure this is hereditary anyway.

Sorry for such a long post, but can anyone offer any advice and confirm that this 2000 level is ok to carry on with SI if needs be.

Any advice would be gratefully accepted.

13 minutes ago

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hhelen
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fbirder profile image
fbirder

Once treatment begins blood tests for B12 are irrelevant. What matters are the symptoms. The BCSH guidelines say that no further testing is required... onlinelibrary.wiley.com/doi...

But trying to persuade your new GP to carry in with 4 weekly jabs is likely to be difffcicult. B12 injections are only licensed for administration every 8 weeks. There’s nothing to stop a GP from prescribing more often (mine does 2-weekly) but some are very reluctant to do so (it’s called prescribing off-label).

So you may have to resort to self injection.

After the new round of 5000 mcg of folate it would be a good idea to try supermarket folic acid (400 mcg a day). This is what is recommended for all women of childbearing potential.

Sleepybunny profile image
Sleepybunny

Hi,

"New GP said she needs a boost of folate but no more B12 jabs as B12 is 2000."

Have you and your daughter considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

"She said she thought she had PA even though the intrinsic factor test came back negative"

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 and Antibody Negative PA can be diagnosed in UK. Has her GP seen this?

Prolactin test

labtestsonline.org.uk/tests...

I am not medically trained.

Sleepybunny profile image
Sleepybunny

Hi again,

Apologies for lots of short posts. Can't add to original post for some reason.

Other UK b12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Coeliac Disease

In UK, two first line tests are recommended. Unfortunately some UK Gps do not do second test. Total IgA test checks which patients have IgA deficiency ; these patients will need different tests for Coeliac disease.

1) tTG IgA

2) Total IgA

NICE guidelines Coeliac Disease (2015 version) recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

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

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Sleepybunny profile image
Sleepybunny

H pylori infection

patient.info/health/dyspeps...

Has she been ever been checked for internal parasites eg fish tapeworm?

One possible sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil level can be found on Full Blood Count (FBC) results.

Exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Does she get copies of all her blood test results?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

"We have a meeting next week with the GP who is a new partner, but I get the feeling that he does not want to offer any further injections "

Might be worth joining and talking to PAS prior to this meeting. Basic membership costs £20 for a year. PAS can sometimes intervene directly on behalf of PAS members. See blog post below.

martynhooper.com/2017/06/24...

I do hope your new GP is helpful. I'm not sure that GPs always realise just how severe B12 deficiency can be. Info below may be helpful, may be upsetting to read.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Help for GPs

1) PAS website has section for health professionals which GP might find useful.

Health professionals can join PAS for free.

pernicious-anaemia-society....

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

3) Some forum members have passed on PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment" to GPs.

pernicious-anaemia-society.... See Page 1 of articles.

Thyroid Problems

Many on this forum also have thyroid problems. Has she ever had thyroid tests? In UK, GPs often only do TSH which won't give a full picture of thyroid function.

Might be worth putting any thyroid results on Thyroid UK forum on HU. Marz who posts on this forum knows about thyroid issues, may be worth looking up some of her posts.

Thyroid UK website

thyroiduk.org/

Sleepybunny profile image
Sleepybunny

"started treating her with loading injections and folate then injections every 12 weeks- increased to every 8 weeks then every 4."

What pattern of loading injections did she have?

Does she have any neurological symptoms eg tingling, pins and needles, tremors, balance issues, memory problems, word finding difficulties, confusion, brainfog, migraine, tinnitus plus other neuro symptoms?

1) UK recommended B12 treatment for B12 without neuro symptoms is ....

6 B12 loading jabs over 2 weeks followed by a jab every 2 or every 3 months.

2) UK recommended B12 treatment for B12 WITH neuro symptoms is ....

A B12 loading jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months if improvement continues) then a jab every 2 months.

I'm thinking that if she only had 6 loading jabs over 2 weeks originally (for those without neuro symptoms) and she has neuro symptoms then there may be a case for asking new GP to give second pattern of loading doses ( every other day for as long as symptoms continue to get better). I wonder if she had enough loading injections at start of treatment?

hhelen profile image
hhelen in reply toSleepybunny

Thank you for all the advice- much appreciated.

Yes- she had a lot of neuro symptoms with leg weakness, numbness, pins and needles and dizziness, unable concentrate for long, headaches etc....

She has joined the PA- thank you - and we have Martyn Hooper’s book which we are about to go through-Maybe I should get a second copy for the GP!

Coeliac test negative.

Not tested for H Pyroli nor fish tapeworm (though she doesn’t eat fish)

The nitrous oxide - yes- she had toe surgery on both feet in 2012 and had general anaesthetic 4 times, so not sure of exposure then, but when she was ill this time and ended up in hospital, ironically, they gave her nitrous oxide several times for back and leg pain!

We need to work through the info. we have now - just seems so strange - and very frustrating!- that’s most GPs have little knowledge of this.

Thanks again.

Sleepybunny profile image
Sleepybunny in reply tohhelen

Hi,

"Coeliac test negative."

Did you see the actual results?

I learnt from bitter experience not to trust what I was told unless I had a copy of results in my hand. On more than one occasion I was told everything was normal only to find abnormal and borderline results when I got copies.

Has your daughter checked that both the tests I mentioned were done; tTG IgA and total IgA? If total IgA test was not done then I don't see how GP can be sure she does not have Coeliac disease.

As I said above, Total IgA test checks which patients have IgA deficiency. Patients with IgA deficiency do not make the antibodies to gluten that the tTG IgA test checks for so they will test negative on tTG IgA test even if they have Coeliac disease.

Coeliac UK helpline 0333 332 2033 may be able to answer general queries about Coeliac tests.

Coeliac disease and neurological symptoms

coeliac.org.uk/coeliac-dise...

Does she have gut issues? Has she ever seen a gastro-enterologist?

a gastro specialist may be able to spot signs of gut damage from Coeliac, PA , H Pylori infection etc.

Sometimes Coeliac disease can present just with neurological symptoms.

"The nitrous oxide - yes"

Nitrous oxide inactivates B12 in the body. If hospital knew she had low B12 then did they give her a B12 injection after surgery?

After nitrous oxide administration, it would take time to build up levels of B12 again unless B12 injection/B12 supplements given. The body cannot use the inactivated B12.

There have been cases of people suffering spinal cord damage after being given Nitrous Oxide. See links about SACD in above post.

Sleepybunny profile image
Sleepybunny

"She has joined the PA"

She could ring them. Better to phone rather than e-mail.

pernicious-anaemia-society....

There may be a PAS support group close to her, currently 9 UK support groups.

pernicious-anaemia-society....

Support groups can be sources of useful info eg helpful GPs etc

hhelen profile image
hhelen in reply toSleepybunny

Ok- thank you

Cherylclaire profile image
CherylclaireForum Support

This is a lot of information to take in and the number of health experts who are lacking in even basic knowledge regarding B12 deficiency quite unbelievable. Scarey. Especially when it is related to their chosen field !

It sounds as if you had a very good GP who was aware of the need to be quick and be led by symptoms in treatment. She also knew that PA cannot be ruled out by an unreliable testing method. If it had been otherwise, there would be no Pernicious Anaemia Society, because Martyn Hooper (founder) had to have this test several times before proving to have PA.

Was your daughter's MMA (Methylmalonic Acid) tested? The reason I ask is that, when I was deteriorating badly when put on a one-every-three-month regime, the GP had my B12 retested and MMA checked: B12 at over 2000 ng/L (from 196ng/L originally) but crucially MMA raised, leading her to diagnose functional B12 deficiency, confirmed by the laboratory where the bloods were sent. MMA levels should normalise soon after injections but mine didn't. This was the deciding factor for justification of an increase in B12 injections to loading levels (2 per week).

It takes some of us quite a while to see improvements. It is worth noting down symptoms on a chart, so that minor improvements or setbacks / length of improvement period in relation to injection/ severity of symptoms can be recorded. My folate, ferritin and vitamin D levels were also affected. This can be important because while some GPs may not recognise all of the symptoms as being B12 deficiency, some highly visual and persistent symptoms eg; hair quality/loss, or sores at corners of mouth might be attributed to either folate/ferritin deficiency. Vitamin deficiencies present in some similar ways visually- eliminating some of these may get you to the answer quicker.

I also take photos sometimes, just in case they don't believe me if I'm having a rare "good hair day" ! Very good luck. Let us know how your daughter gets on.

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