Help - recently discovered B12 deficiency

[Cheryl2407]

Hello everyone, new to all this and not sure where to start and what line to take next. I've suffered with anxiety, heart palpitations and panic attacks for years, which all seemed to calm down after coming off the pill. It took me four years to become pregnant and I had a health baby in 2014 followed by another in 2015. Since my second child I had noticed bad pins and needles all down my left side. I was referred to neurology for an urgent brain scan that came back clear. Following on from that I went back on the pill and started to suffer within days from paranoia, panic attacks resurfacing and horrible depression that I had never experienced in my life... After being put on 5 different pills with no relief from my apparant PMS the doctor prescribed fluoxitine (prozac) which again made things worse. I started to do my own research and came across symptoms of B12 deficiency, I ticked alot of the boxes and so requested a blood test. The results came back at 187 (a slight deficiency) the doctor tells me. I was prescribed 3 monthly injections but after reading up online about loading doses where neurological symptoms where present I asked for loading doses and started my injections last week. I had one last Tuesday and then didn't get another until the following Monday and then again today. I don't have another until Monday. I have noticed my mood improve dramatically and my anxiety although initially worse seems to be lessening and my head feels clearer than it has in years at times. I'm just concerned now about what's next - I had a GPC antibodie test come back normal as did my FBC and c reactive protein test. I've had no other tests and been referred back to neurology. What should I do now? Could it be that the pill has just caused this? Should I ask for more tests to find out why I'm deficient? I'm scared of going backwards again although some of my symptoms are still lingering, mainly the left sided tingling and ear ringing. Anxiety/breathlessness is popping in and out....help! Sorry for the long post

[Lisahelen]

Hi, welcome. Hopefully someone can give you the answers you need.

When you had your babies was that natural or under any sedation, because nitrous oxide can deaden b12.

Do you suffer any tummy problems?

[Cheryl2407 in reply to Lisahelen]

Hello and thanks for your reply. Can't say Ive noticed any trouble with my stomach. I had nitrous oxide both times and I get it eveytime I go to the dentist. The more I read into all this the more worried I am that I'm not going to be listened to or get the treatment I need. I don't even feel like the treatment I've received so far is correct based on all my symptoms

[LtAngua52]

Hi cheryl2407,

No wonder you are feeling so bad, a b12 level of 187 is very low and guidelines from the British committee on standards in haematology say that you should have loading doses every other day until symptoms stop improving and then every two months when you have neurological symptoms. Many people need them more frequently. 187 is not slightly deficient!

Anxiety, depression, breathlessness and paranoia are all symptoms too. Give them a copy of the guidelines, maybe your doctor just needs reminding of them. You never know. There is the intrinsic factor antibody test too, but doctors should be treating the symptoms and not blood tests.

By the way, nitrous oxide further depletes b12 stores.

[Cheryl2407 in reply to LtAngua52]

Do you know where I can get a copy of these guidelines? I'm feeling very stressed about all of this. Thanks v much

[LtAngua52 in reply to Cheryl2407]

I'm not very good at doing links. If you google the British committee on standards in haematology and click on view guidelines in the first box then type into the search box at the bottom folate and b12 guidelines the document title will come up and you click then on published version. I'm sure there is an easier way, and I think going into our archive for a post from fbirder is probably faster!

You can ask the PA society to speak to your doctor if you still get no help.

You could always ask the practice manager why your doctor is not sticking to the guidelines.

[Marz in reply to Cheryl2407]

healthunlocked.com/pasoc/po...

sleepybunny - in the above link - is one of the many well informed people on this forum. You can also check out Gambit and fbirder too. The links should be there you need re Guidelines. You do need injections until your symptoms subside. You can buy injections from abroad and have them done yourself as many on this forum do. You can type anything into the Search Pernicious Anaemia Society - box at the top of the page - and then press Enter.

It is a scandal that Docs are so unaware that B12 deficiency is a neurological condition and not just a vitamin deficiency.

b12deficiency.info/signs-an...

Lots of useful information in the above link. Including the trailer of the film - Could it be B12 - film also available. Also check out the other videos under the heading Films. There is also a Sample letter you can write to your GP

When injecting B12 - also consider take a GOOD B Complex to keep all the B's in balance. Folate and B12 work together in the body.

I would also consider having your Thyroid checked - correctly and not just the TSH. Happy to help with that one. Low thyroid and Low B12 go hand in hand due to the lowered metabolism.

I am not a Medic - just a Hashi's girl with a B12 issue

[Cheryl2407 in reply to Marz]

Thank you what additional tests should I request for my thyroid?

[Marz in reply to Cheryl2407]

TSH - FT4 - FT3 and Thyroid Anti-bodies - Anti-TPO and Anti-Tg. If your GP is not supportive - they so often think the TSH is enough - then you can have Private Testing through Thyroid UK .... Go for the Package 11 that will also cover other vitals - if appropriate.

b12deficiency.info/signs-an...

Kits can be sent to your home and results e-mailed to you.

[fbirder in reply to Cheryl2407]

Do you know where I can get a copy of these guidelines? I'm feeling very stressed about all of this.

If you download my summary document - frankhollis.com/temp/Summar... - there's a link to the BCSH guidelines, along with a few more scholarly sources. There's also a selection of important points from them.

[clivealive Forum Support]

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

These are the guidelines your doctor should be working with.