Oxygen: Hi I had my 2nd b12 injection... - Pernicious Anaemi...

Pernicious Anaemia Society

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Wens1114d
Wens1114d

Hi I had my 2nd b12 injection today. I am reading a lot about my condition but not getting the answers. For many years my Hubby has to to prod me as I stop breathing in bed at night, last night I stopped breathing 4 times within 10 mins, and I lay on my side. The question I have is does a oxygen mask help in the day? Im so out of breath it hurts, has anyone else been given a oxygen bottle ? I also have ashma. Thanx

11 Replies
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No I have not mentoned this to my GP, but I will do on Friday.

Yes I will purchase a oximeter, thank you for your help.

Hi,

On your older thread you mentioned 6 loading doses then injections every 3 months.

This is the standard UK treatment for b12 deficiency without neuro symptoms.

Do you have neuro symptoms?

Lists of b12 deficiency symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes, is GP aware that in UK, people who are symptomatic for B12 deficiency with neuro symptoms should have more intensive treatment...a loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Lists of b12 deficiency symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK b12 treatment info is in

1) BNF British National Formulary Chapter ( Section 1.2)

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

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

2) BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

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

B12 books I found useful

"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.

Have you been diagnosed with PA (Pernicious Anaemia)?

Did you have an Intrinsic Factor Antibody test?

This flowchart outlines when PA can be diagnosed in UK.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

If you suspect PA, it may be worth joining PAS (Pernicious Anaemia Society). Costs £20 a year. They can offer support and info.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

"Im so out of breath it hurts"

Shortness of breath can be associated with B12 deficiency/PA but of course there can be lots of other causes of shortness of breath.

There is a lot more b12 info in pinned posts on this forum.

I note that you have had surgery recently. Did you have nitrous oxide as part of anaesthesia? I read that Nitrous Oxide can inactivate B12 in the body.

UK link about nitrous oxide

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

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I am not medically trained.

Hya yes I have all the symptoms, main one my GP was worried about was symptoms like dementia this is why he took bloods.

But ive had these symptoms for many years, tiredness after a good night sleep, painful joint, bones a muscles, headaches, hands a feet itchy, painful gets too hot then freezing and my body is the same.

Thank you

It sounds to me like you have sleep apnoea and should tell your Dr who can refer you to a special clinic. They can give you lots of help including providing you with a special breather that you wear at night to stop it.

I have Doctors on Friday I will tell him then.

My 15 yr old Son suffers the same.

Thanx

Hi

Sounds like sleep apnea. You need to tell GP for hospital referral.

Wens1114d
Wens1114d in reply to Ryaan

I told my GP yesterday that I stop breathing that I have sleep apnea, she said thats not sleep apnea !! but for me to make another appointment about it !

fbirder
fbirder in reply to Wens1114d

You stop breathing, no breath. Or, if we were speaking Greek, apnea. It happens when you're sleeping.

If that's not sleep apnea then I don't know what is.

Have you done the Epworth Sleepiness Score (linked from here): nhs.uk/Conditions/Sleep-apn...

It might be worth doing it if you want something to take along to discuss with your GP that supports your apprehension that you might have sleep apnoea?

Have you had your thyroid correctly tested ? - not just the TSH. Low thyroid can be connected to many of your symptoms ....

thyroiduk.org

Just to mention that 4 times in 10 minutes is a high number of episodes.

However, because many of us stop breathing several times a night or might go through phases of this (for various reasons), the diagnosis of sleep apnoea is made when there are symptoms plus the number of episodes exceeds a certain number if this is in combination with a significant drop in blood oxygenation or disruption to the heart rhythm (e.g., atrial fibrillation) or if someone has a number of other health conditions:

sleepmed.com/sleep-disorder...

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