At last!

[Silverstar321]

After almost 3 years of trying to get my GP to help me I have eventually had my first B12 jab today. Feeling very queasy, hot and sick but it really isn’t as bad as I have been feeling. My level was at 91.. which I’m lead to believe is very low. I’m hoping that the the numbness and tingling and continuous pain in the whole of my body is going to gradually subside, just hope it’s not too late. 🙁

[Nackapan]

Hope you are having regular injections now as per bnf guidelines. Yes your level low mine was 106 . It may take a while if you deficient for so long.

I initially my body was in shock. Others get the benefits quicker. I wish you well

[Silverstar321 in reply to Nackapan]

Hi, thanks for your message! I’m starting on the 6 injections 2 days apart for the moment. 1st today, before which I had bloods taken for additional testing to try and work out what the problem is.

Excited for a new start!

[Sleepybunny]

Hi,

Hope you'll soon see improvement in your symptoms.

Some forum members report that some symptoms can get worse for a while when starting treatment .

What treatment is your GP planning to give you?

You mention neuro symptoms such as tingling and numbness.

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.

Mild dietary B12 deficiency is sometimes treated with low dose oral b12 tablets. More severe dietary deficiency with neuro symptoms should be treated with B12 jabs.

Vital to get adequate treatment as there is a risk of permanent neurological damage including spinal problems if under treated.

Letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

BSH Cobalamin and Folate Guidelines

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

BNF

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

What does the GP think has caused your B12 deficiency?

If you suspect PA, may be worth joining PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

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

B12d.org has some online support meetings during pandemic.

b12d.org/event

Link about what to do next if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

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). BNF treatment info in this book is out of date. See BNF link up page for up to date info.

I wrote very detailed replies on another forum thread with more info eg symptoms lists, causes of B12 deficiency, tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.

healthunlocked.com/pasoc/po...

If you're in UK, be aware that the pandemic is impacting patients' B12 treatment.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Silverstar321 in reply to Sleepybunny]

Hi, thanks for your message! I’m starting on the 6 injections 2 days apart for the moment. 1st today, before which I had bloods taken for additional testing to try and work out what the problem is. It’s very annoying to have got to this stage. I went to my GP two years ago with private blood test result... 2018 result was 128 and 2019 106 and I was basically told to eat more meat and start HRT! My GP was shocked at the result, she’d given in and sent me for a blood test for suspected arthritis after I’ve been bugging her for 6 months about HRT not helping.

I’m at the point of absolute exhaustion, tingling hands and feet, all over muscle and what feels like bone pain. Like I said, hope it’s not too late for this to be reversed.

😃

[Sleepybunny in reply to Silverstar321]

Hi,

"I’m starting on the 6 injections 2 days apart for the moment. 1st today, "

The loading doses you describe are for those without neuro symptoms.

You may need to challenge them to get recommended level of treatment.

You already mention tingling and numbness which are usually considered neuro symptoms.

There is a risk of permanent neurological damage if under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

I suggest you make sure GP is aware of every neurological symptom you have.

You could use the PAS list below and add any additional symptoms and give a copy to GP.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Peripheral Neuropathy is often associated with B12 deficiency so make sure your GP is aware of any symptoms suggestive of Peripheral Neuropathy.

nhs.uk/conditions/periphera...

Neurological symptoms can include

tingling, numbness, pins and needles, burning sensations, insect crawling sensation (formication), electric shock sensations, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, tremors, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), memory problems, word finding problems (nominal aphasia), balance issues, brain fog, proprioception problems (problems with awareness of body in space) etc?

With neuro symptoms present, have you been referred to

1) a neurologist

2) a haematologist

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives may be worth talking to if you cannot get recommended level of treatment.

More info in links to detailed replies on other threads and in pinned posts on this forum.

[deniseinmilden]

If it's any consolation, I'd had deficiency symptoms for at least 20 years and had got to the point of barely being able to walk or talk, teeth dying because their nerves died, various other neuropathy issues, no memory and all manner of grim things before I got treatment, but I have mostly recovered and 5 years on I am still improving.

I have found that the length of time I was deficient has taken its toll and I have had to self inject every day to get well again. I do, however have other problems which haven't helped my recovery and the straight B12 deficiency is mostly sorted now.

Well done on getting this far and good luck for the future!

[Silverstar321 in reply to deniseinmilden]

Wow! It sounds like you have been through the most awful time and I’m so sorry it took so long for you to start feeling better, and for you to have the treatment you needed. It’s absolutely amazing that you are sounding so positive and that you go from strength to strength each day.

May your recovery be on going and good luck to you too. 🍀

[deniseinmilden in reply to Silverstar321]

Thank you! x

[Ghound]

Well done ! It may take some time to recover, it was over 6 months before I noticed a significant improvement in my neurological symptoms.

I realise now that my health had been slowly deteriorating for years, so don't lose heart and keep going !

Best wishes x