B12 D

[Tiggers321]

Who suffers the “sighs” deep breathing issues with low b12 mine is 89! I don’t have P.A.

[wedgewood]

“The Sighs “ and breathlessness are just 2 of the many symptoms of B12 deficiency , and the cause for the b12 deficiency is immaterial. Pernicious Anaemia is the most common cause of B12 deficiency.. I had those symptoms ( amongst others ) when I had B12 deficiency , which turned out to be caused by P.A. Lack of sufficient B12 in the red blood cells means that they don’t mature , and are so large that they cannot access oxygen — hence the sighing to try to get more oxygen . You will find that the sighing and breathlessness will disappear when you get sufficient B12 into your cells . If the cause is dietary, tablets will rectify this ( vegan and strict vegetarian diet causes b12 deficiency ) .

Pernicious Anaemia is difficult to diagnose because P.A. patients often (about 50% of the time ) test negative , when they actually have the condition . P.A. patients have to be treated with B12 injections FOR LIFE .

Rarely, B12 deficiency can be caused by infestation of fish tapeworm from eating raw fish .

Some medications if taken over a long period can cause b12 deficiency e.g. Metformin for Diabetes , proton pump inhibitors like Omeprazole . Strong antacids and contraceptive pills .

[Tiggers321 in reply to wedgewood]

Thanks for your reply, it’s reassuring to know someone else has had these symptoms! The sighing has caused me to have a panic disorder as I couldn’t get checked during the pandemic!i had to fight for a chest X-ray (clear) and asthma consultation (again clear) then A recent blood test showed the low b12 but I tested negative for P.A.! It’s a very scary time and I hope the oral supplements will help quickly to relive both symptoms and anxiety as I am now reliant on Prozac and the occasional dose of diazepam!

[wedgewood in reply to Tiggers321]

Glad you are on the tablets . If they don’t work , you may have P.A. As I said about 50 % of P.A. patients test negative . The most reliable diagnosis is if treatment works . If the cause is dietary , the tablets will work . Do you eat meat , fish , eggs and dairy?

[Tiggers321 in reply to wedgewood]

I do but only in small quantities, We would share 2 chicken breasts between my self and my husband and two children to save costs and bulk up with veg and pasta or rice and only eat mince again in small quantities between the four of us! We have steak on special occasions. I don’t like eggs, don’t eat yoghurt often and only eat tinned tuna at times, I eat cheese and have milk in tea but again in small amounts! My appetite is non existent I have never eaten breakfast regularly and would normally have toast if I do not cereal! And often skip lunch completely I have made big changes in my diet this week to include more of these foods including eggs. My husband and children eat eggs regularly and have school meals which include a good variety of these and I guess the children need less than an adult!

[wedgewood in reply to Tiggers321]

You actually don’t need large quantities of B12 . If you don’t have P.A. you can store what you don’t use in your liver and use it as required . From what you write, it sounds as though you should get enough from your diet. But if you benefit from the tablets and those symptoms disappear , it sounds like you could have had a dietary deficiency . Best wishes

[Tiggers321 in reply to wedgewood]

Thanks for your input let’s hope the tablets work x

[Tiggers321]

Yes that’s the type of thing I am experiencing all of the time unless asleep! Very frustrating! Don’t want to speak to soon but it seems a little better this morning one week in! We are off on holiday today so would be lovely to have some relief! Thanks for your reply x

[Cherylclaire Forum Support]

The sighs are also known as air-hunger. GPs and consultants seem a bit stumped and my GP put it down to "anxiety" - which I knew it wasn't. This symptom surely must be highly specific to B12 deficiency, yet no-one in the medical profession that I have spoken to in the last 5 years seems to recognise it as such.

Mine is now quite rare, but has taken about 5 years to become so, and was for much of that time a daily problem. For example, it always occurred when I was queuing up at the supermarket checkout, found shopping exhausting: peripheral movements around me, constant turning head to scan shelves, losing sense of direction in aisles, bright lights, dizziness and trying to remember what I needed. The loud overlapping sighs would turn heads - at first I was embarrassed, but after a while, I'd just smile at the queuers and shrug, then they would smile back or laugh. Not the worst thing.

I am a vegetarian. Tablets/ sprays don't do anything for me. I'm guessing that it would not have taken 3 years of very frequent injections to ditch the sighs if the cause of my B12 deficiency was solely dietary. Still have other symptoms to work on but finally making progress !

[fbirder]

When I was first diagnosed I sat down with the people I live with and read through the symptoms. As I got to 'deep sighs' they both exclaimed "That's you. And it's so annoying".

[Tiggers321 in reply to fbirder]

Mine is related to air hunger and is constant even at rest! And with the difficulty to takes deep breath sometimes too! Again doctor said anxious breathing or dysfunctional breathing but no amount of exercises helped at all they even made it worse! The sighing caused my anxiety not the other way around. I have seen some improvement with supplements after one week but still feel along way to go to fully recover both physically and mentally after 5 months of stressing about why I can’t breathe. I hope your symptoms continue to improve.

[Sleepybunny]

Hi,

Thought these links might be useful

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for Coeliac disease (spelt Celiac in US)?

UK guidelines suggest anyone with unexplained B12, folate or ferritin deficiency should be tested.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done in UK but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

Any possibility of H Pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori (UK)

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any exposure to nitrous oxide?

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Do you ever eat raw/uncooked fish eg sushi/smoked salmon etc. There are other parasites that can lead to b12 deficiency.

Any history of gut conditions in your family eg Crohn's disease?

It's hard to diagnose PA.

Flowchart from BSH Cobalamin and Folate Guidelines ( a UK document)

stichtingb12tekort.nl/weten...

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

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

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

I am not medically trained.

[Tiggers321]

My mum is a celiac so yes I think this test was completed with my bloods last week! No I don’t eat any far fish or meat! Thanks for the links they are an interesting read.

I will go back to my GP if things don’t improve.