Is B12 deficiency implicated in any r... - Pernicious Anaemi...

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Is B12 deficiency implicated in any respiratory problems?

Dewbuc profile image
26 Replies

I cannot find any relevant information but wondered if B12 has been implicated in any respiratory problems? My sister is I think B12 deficient, although it's never been properly diagnosed and her only treatment is 50 mcgs B12 by mouth daily. She is now a respiratory cripple as a result of "idiopathic" Pulmonary fibrosis which was very badly treated.

I had a cryptogenic organising pneumonia two years ago which settled with high dose steroids over a six month period. I have had a persistent cough and slight shortness of breath all summer which I had attributed to hay fever. I'm beginning to question my judgement!

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Dewbuc profile image
Dewbuc
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26 Replies
Marz profile image
Marz

With my Thyroid UK hat - I read daily of Low B12 - along with Low Folate - Ferritin - VitD. All these are linked and could be the cause of some of the symptoms you are mentioning - especially low VitD .... The Thyroid levels do balance moisture/fluid levels in the body which I have read can impact the lungs and be the cause of asthma type symptoms ....

Off to have a search round !

healthunlocked.com/thyroidu...

Dewbuc profile image
Dewbuc in reply to Marz

Wow! Thank you. I am hypothyroid on high replacement dosage so it could be a factor.

Marz profile image
Marz in reply to Dewbuc

...and hopefully with good FT3 levels near the top of the range 😊

Dewbuc profile image
Dewbuc in reply to Marz

Ft3 5.4 - range 3.5-6.5.

TSH less than 0.01 - range 0.55-4.78 with suggestion thyroid replacement could be excessive assuming primary uncomplicated hypothyroidism.

Marz profile image
Marz in reply to Dewbuc

The FT3 is almost spot on. 😊When TSH is low there is always a panic but one is only over medicated when the FT3 is over range as I am sure you know.

Ferritin and VitD - are worth looking at too. Hypos need good levels - am thinking yours are fine as you have good conversion - assuming the FT4 is also good ...

Thyroid anti-bodies ? TPO & Tg ?

Dewbuc profile image
Dewbuc in reply to Marz

The FT4 is never measured and thyroid antibodies have not been measured. I'm sure my Vitamin D is fine - lots of dairy food and lots of sunshine. Ferritin has never been measured, but I have never been Anaemic and I eat lots of iron containing food as well as a daily multivitamin.

Marz profile image
Marz in reply to Dewbuc

Gosh that is unusual not to have the FT4 tested and yet have the FT3 tested. Are you on T3 only or NDT ?

VitD is optimal around 100. For the sun to work - we need over 40% of the body exposed between the hours of 11am and 3pm. Have lived in Crete since 2004 and tested insufficient after a few years of lots of sunshine ! But then I do Hashimotos and Crohns and both are linked to low VitD. Now fine.

Ruling out Hashimotos is always a good thing in my book as there is so much we can do to help ourselves. Have a feeling you are OK with that good FT3 result. What dose of Thyroid hormone are you taking ?

Dewbuc profile image
Dewbuc in reply to Marz

Laevothyroxine 150mcgs daily.

I think they used to test FT4 but no longer tested. I can't do battle on that front too - now!

Marz profile image
Marz in reply to Dewbuc

No need to do battle at all. There are over 62,000 people on Thyroid UK Forum that would give their back teeth to have the FT3 result rather than the FT4. As you know it is the most important test as every cell in the body has a receptor for T3 - so there for a reason :-)

Most people have to go the private route in order to get to the bottom of their symptoms by having the FT3 tested along with all the others.

Dewbuc profile image
Dewbuc in reply to Marz

Wow! For once my GP scored, although I expect it is the knee jerk lab response to a thyroid function request!

Marz profile image
Marz in reply to Dewbuc

From my reading labs do not even test the FT4 if the TSH is in range - you couldn't make it up :-)

Cwilli profile image
Cwilli in reply to Marz

Hi Marz

I live in the US. Have PA and Hashimoto's. I was wondering if you could post the link to Thyroid UK Forum ?

Marz profile image
Marz in reply to Cwilli

Cwilli - here is the link ....

www thyroiduk.org

You can also find the Forum by clicking onto Communities above ....

Shout if you have a problem 😴

Cwilli profile image
Cwilli in reply to Marz

Great thank you.

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Dewbuc

"I'm sure my Vitamin D is fine" - very possibly it is but...I thought I'd be fine (I eat a tiny amount of oily fish most days and a full portion at least x2 a week) plus the sunshine. My GP tested it and it came back as "severely deficient".

I have a sibling with a similar result for vitamin D who was taken aback to discover a deficiency in vitamin K despite including green, leafy vegetables and other usual sources daily (screened as part of the assessment for an osteoporosis clinical trial as vitamin K testing is only available in a very specialist lab).

It has to be said that pretty much every member of my family has lifelong gut issues so we wonder if, over time, this had had implications for our absorption of vitamins and minerals for which we were unaware.

Marz profile image
Marz in reply to ITYFIALMCTT

Yes - we are what we absorb - rather than what we eat 😊 After several years of living in Greece hubby and I tested *insufficient* - which we put down to being older.

grassrootshealth.net

A US site so remember the measurement differs.

Sleepybunny profile image
Sleepybunny

Hi,

One of the typical symptoms of B12 deficiency is called "the sighs"

pernicious-anaemia-society....

pernicious-anaemia-society....

My feeling is that low B12 has an impact on the immune system and possibly leads to opportunistic infections taking hold including respiratory infections. I've had very few colds since starting B12.

Perhaps your sister could look at PAS website and this forum.

Dewbuc profile image
Dewbuc in reply to Sleepybunny

Very helpful thank you. I think the B12 deficiency is why I feel breathless on exertion even though my respiratory function, tested are rest, is entirely normal.

fbirder profile image
fbirder

My father had IPF and I can say for certain that the B12 'sighs' are nothing like his symptoms.

Although, by definition, nobody knows what causes IPF, one possible cause is inhalation of stomach contents due to GERD, which is similar to the symptoms of gastric atrophy (the base cause of PA).

Dewbuc profile image
Dewbuc in reply to fbirder

That is a possibility which was not really considered by her specialists, even though I raised it as a possible cause of her problems.

deniseinmilden profile image
deniseinmilden

I feel like I'm breathing with fluid in my lungs and get a cough which sounds a bit like a heart-failure cough when I am low on B12 or haven't got the extra supplements I need balanced right, especially if I do too much. Once the B12 is fully functioning again it goes away.

Whether this is an issue of my respiratory system direct or because if my B12 isn't working well it adversely affects my heart arrhythmias and makes the dodgy valve prolapse more, I don't know, as my ankles and wrists increase with fluid at the same time.

But either way, there is a definite link for me.

Dewbuc profile image
Dewbuc in reply to deniseinmilden

That's very interesting. Thank you. Those symptoms sound very similar to mine.

I have been coughing all summer. It's not typical hay fever, as the cough is the main symptom. I have no runny nose, itchy eyes etc. I often feel slightly wheezy and can be short of breath on exertion. My heart and lung function are fine.

These symptoms have been coming on gradually since I had 9 hours surgery followed by 6 months chemo ten years ago, which I now suspect started to tip my B12 balance. It has become much worse over the last two to three years. My exhaustion also got much worse during that time.

On reflection my mother had similar symptoms in later life, but did have heart problems. My sister has pulmonary fibrosis and is always short of breath and requires oxygen. I don't recall my granny having respiratory problems but she was paraplegic for the last ten plus years of her life because of subacute combined degeneration of the cord, so was bed and chair bound for all that time. My mother and sister were never diagnosed as 12 deficient, although my sister has been on 50mcgs(!) for years!

I do wonder if there is a B12 connection. If my respiratory problems improve it will be a definite clue.

I could find nothing to substantiate my suspicions but of course it's very unlikely anyone has ever tested for B12 for these symptoms.

Sleepybunny profile image
Sleepybunny

Hi,

I did find links that suggested some cases of IPF were linked to mutations in TERT gene (telomerase reverse transcriptase).

Dewbuc profile image
Dewbuc in reply to Sleepybunny

I think I saw those too, but most PA patients will not have been genetically tested and no very direct link has been made. It will be interesting to see if anyone else has noted a respiratory problem.

SusanLMckinney profile image
SusanLMckinney

In 2001 when my pernicious anemia was diagnosed, My blood tests said I had no detectable B12. I was having a lot of trouble breathing or should I say, I felt like I was not getting oxygen. This is because the red blood cells do not mature and do not carry oxygen or Iron as they are supposed to. I don't know about other breathing problems.

Dewbuc profile image
Dewbuc in reply to SusanLMckinney

That's very interesting. I suspect it was because you were very anaemic which could cause those symptoms. I think mine is different as I am not anaemic, but there could be a connection directly with lack of B12.

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