New to B12 deficiency - what next?

[Alpaca24]

Hi, I’m relatively new to b12 deficiency. I’m a bit stuck with what to do next and wondered if anyone has any suggestions. I am a 29 year old woman and I first noticed some pins and needles in my arms in Nov last year but it quickly went away. Then just over 2 months ago pins and needles started in both legs and arms and it didn’t go away. I had a sore tongue at this time and some pain in my joints. A blood test then showed I was b12d at 180pg/ml. My folate was high in the range. Ferritin never tested. My MCV was high (99) and MCH also high but within reference.

I was treated with loading dose of hydroxy injections. After 4 I noticed some improvement but this didn’t last and by 6 injections I was back to experiencing lots of tingling and numbness. I then convinced my GP to do another 6 injections but I didn’t seem to feel any better from this (actually a lot worse - on edge, heart palpitations, chest tightness when walking). So they didn’t offer more. Then had brain and spine MRI and both were normal. I also tested negative for intrinsic factor antibody. I had been reducing my meat intake over past year and I don’t eat dairy as I’m allergic to milk but I still was eating meat, eggs and fish a few times a week.My chest X-ray was normal and an ecg was normal with sinus bradycardia (I take beta blockers for migraine prevention).

Now I’m a month on from injections, been taking b12 supplements (firstly took cyanocobalamin 100-200mcg daily but switched to methylcobalamin spray about a week ago- 500mcg daily) alongside a multi-vitamin and folate supplement (400mcg) every other day. I only started these supplements after injections after reading lots on here. Also just started a magnesium supplement yesterday. However, I still have numbness/pins and needles (not as intense before but often a sensation of the blood supply being cut off in my arms and legs), pains in fingers and toes, muscle twitches, lots of joint pain all over (especially bad in knees, hips and lower back), chest tightness and heart palpitations on and off. I went for a faster paced walk the other day and had to sit down as I thought I might faint from lightheadedness. I’ve also had constant rocking vertigo since about a week after I stopped the injections (although I had dizziness on and off that started shortly after beginning injections).

I stopped the b12 spray and other supplements for a few days recently and the chest tightness went away (I also massively increased my potassium intake so not sure which helped) but today chest tightness is back without taking supplements so not sure the b12 is causing this.

I should mention I was in South America for 10 weeks last year when numbness started so I am wondering about parasite possibility as a cause of deficiency. Sorry this is a lot of info but wanted to check if anyone has any suggestions for what I should be checking/doing next. My GP has spoken to a rheumatologist who has suggested a few blood tests but said no diagnosis was jumping out at him and my GP has gotten in touch with the tropical diseases service for advice (given the current situation I’m very pleased he is investigating this further).

I’d be grateful for any suggestions anyone has with more experience of this horrible health problem. Thanks!

[Sleepybunny]

Hi,

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

"So they didn’t offer more. "

Do you mean that they stopped B12 injections totally or are you now going to get them every 2 or 3 months?

If they have stopped injections totally I am concerned on your behalf.

I've assumed you're in UK.

Patterns of treatment may vary between countries.

Many forum members have reported that their B12 injections have been stopped/delayed or swapped for oral tablets due to impact of pandemic.

If this applies to you, have a look at my reply in this forum thread.

healthunlocked.com/pasoc/po...

"I also tested negative for intrinsic factor antibody"

It's still possible to have PA even if test result is negative.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Were you tested for Coeliac disease?

NICE guidelines Coeliac Disease

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

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

I am not medically trained.

[Alpaca24 in reply to Sleepybunny]

Hi Sleepbunny,

Thanks for your very detailed reply. I will have a look at this information.

I am still due to get another injection in 1 month (2 months after) so I will be continuing with these additional doses. I'm very unsure about whether I should be pushing to have them more frequently as I felt so much worse even after 12 injections but maybe it takes longer than this to notice improvement in neuro symptoms (even the haematologist did not recommend continuing - I think as they say until no further improvement but I wasn't really noticing any and so it was at this point they referred me to a neurologist).

Yes I'm in the UK and at present, my GP practice are still going to give me this injection thankfully.

This document is particularly helpful about diagnosing PA - I will discuss this further with my GP, thanks.

Yes, they ruled out Coeliac's as far as I'm aware - but will double check this.

And I hadn't considered joining PAS but I definitely will look into this. The info I have found on this site has been incredibly helpful in improving my understanding of the complexity of treating this deficiency.

[Sleepybunny in reply to Alpaca24]

Hi,

This info is in the detailed reply in link at top of my first post.

I thought I'd include some of it it here to help others reading the thread.

As you're in UK, I strongly recommend reading all the following links.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Local Guidelines

There may be temporary local guidelines in place due to impact of pandemic. If you are told that there are new guidelines then I think it is a good idea to get hold of a copy.

If they are reluctant to give you one, it is possible to make a formal FOI (Freedom of Information) request to GP practice or CCG for a copy.

For normal times, each CCG will very likely have its own local guidelines on treatment of B12 deficiency. Some of these local guidelines are very out of date and don't really show what is in national guidelines.

I recommend you get hold of a copy of local guidelines for your area and compare them with BSH, BNF, NICE CKS links.

During the pandemic , many forum members are struggling to get recommended levels of treatment and some have had their treatment stopped totally.

Make sure your GP is aware of any neurological symptoms you have. There are lists of neuro symptoms in the link to another thread at top of my first post.

In UK, patients with neuro symptoms are supposed to get more intensive treatment.

You list symptoms such as numbness and pins and needles which are usually considered to be neurological symptoms.

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

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

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

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

There is no set time limit on how long these every other day loading jabs can continue for people with neuro symptoms. It could be for weeks even months. If improvement in symptoms continues so should the every other day jabs.

Vital to get adequate treatment or there is a risk of permanent neurological damage including problems with spinal cord.

Sadly impact of pandemic is likely to interfere with normal treatment regimes.

Be prepared to fight for the recommended level of treatment.

Some on forum have requested that they be shown how to SI (Self inject) their B12 so they can do it at home during the pandemic. Some GP surgeries have agreed but some have refused.

Some on forum source their own supplies and resort to self treatment as they find that NHS treatment is not enough for them. My personal feeling is that this is an absolute last resort but present circumstances have meant many feel they have no other option.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms. Link has letter templates people can base their own letters on.

If you have concerns about your treatment, I suggest putting them into a brief as possible, polite letter to GP. Try to include any evidence that supports your concerns eg symptoms lists, test results, family and personal medical history, extracts from UK B12 articles/documents, info from PAS etc.

In UK, letters to GP are supposed to be filed with medical notes so hopefully are less likely to be ignored than info passed on verbally or on photocopies. Keep copies of any letters written. They are proof that matters have been raised with GP.

I think it is useful to have a paper trail in case there is a need for future complaints.

A useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Be aware that the BNF info in this book has not been updated. See BNF link for up to date info.

Help for GP

May be worth pointing out to your GP that the PAS website has a section for health professionals.

pernicious-anaemia-society....

"Yes, they ruled out Coeliac's as far as I'm aware - but will double check this."

Check they did both recommended tests.

1) tTG IgA which looks for antibodies to gluten

2) Total IgA which checks which patients have IgA deficiency

Patients with IgA deficiency need alternative tests for Coeliac.

Prior to being tested, did your GP ask you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?

If GP didn't test for Total IgA and didn't ask you to eat plenty of gluten for several weeks then it's possible that Coeliac test results are not reliable.

Coeliac Blood Tests

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

More B12 info in pinned posts on this forum.

Thyroid disease

Have you had thryoid tests? Many on forum have both PA /B12 deficiency from other causes and thyroid issues. Symptoms can overlap.

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can order.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

I suggest putting any thyroid results you have on Thyroid UK forum on HU.

[Trace-67]

Hello

Mine started about three years ago pins and needles in hands which then went to feet and numbness in feet then pains started radiating up my leg

Following blood tests I have PA and had loading doses of b12 every other day for two weeks then went into every 12 weeks

The pains changed and went to random different places shooting pains sometimes in wrist or upper opposite arm

Injections are now every 8 weeks pains constant in lower back and hips and one knee in addition to other spot places sometimes also wake up in the night with totally numb hands! Had blood tests for everything so my gp just says I must have fibromyalgia too. I am now on pregabilin every day and have co codamol to take

If needed

I am resound to the fact of always having these pains now as nothing works to get rid of them!

[Sleepybunny in reply to Trace-67]

Hi Trace-67,

Some UK forum members find that NHS treatment is not enough for them and they resort to additional self treatment.

I need far more B12 than is recommended by NHS.

I was diagnosed with fibro but my symptoms are minimal provided I have enough B12.

"had loading doses of b12 every other day for two weeks then went into every 12 weeks"

If you are in UK, you do not appear to have received the UK recommended level of B12 treatment for patients with B12 deficiency with neurological symptoms.

Pins and needles and numbness are neurological symptoms.

UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

There is no set time limit on how long these every other day loading jabs can continue for people with neuro symptoms. It could be for many weeks even months. If improvement in symptoms continues so should the every other day jabs.

You only had two weeks of loading doses.

It's possible that you have been under treated.

b12deficiency.info/b12-writ...

I suggest you read my other replies on this thread.

[Chewys]

You could see this page too b12deficiency.info/what-to-...