Breathlessness!

[Laverdista]

Hi. I know that breathlessness is a big symptom of B12 deficiency, although I didn't have it at all until I started self-injecting 5 weeks ago.

However, my breathlessness seems to be getting worse by the day, and I had to sit outside in the garden for most of today, because I felt like I had real air hunger indoors.

Is there anything else that could be exacerbating the breathlessness apart from B12D? I did notice that the only day I didn't have it too bad this week was the day I forgot to take my 5mg folinic acid. But that's probably a coincidence?

Any tips gratefully received!

[PlatypusProfit8077]

Was your folate super low, that you are taking 5mg of folic?

I felt awful when I was trying to take too much folic, and it probably wasn’t needed at all. I have had great results with just B12 and only 500mcg of folic on injection days.

[Laverdista in reply to PlatypusProfit8077]

Thanks. Yes, my folate was super low (2.7) when I started self-injecting, hence the 5mg. However, I do seem to feel rotten when I take it, and (re: my previous post about my depression and anxiety) another user has pointed out that NICE guidelines say that folinic acid in large doses 'may cause anxiety and depression'...

Hopefully should have some new blood test results soon, and can see if the mega-supplementation of folinic acid (folic acid upset my stomach) has worked.

[PlatypusProfit8077 in reply to Laverdista]

I think I remember that B9 is one of the easiest to absorb and get levels up. So hopefully the tests show that’s worked for you and you can ease off on the tablets.

[Iheartb12]

I have a very hard time breathing when I vitamin D deficient which happens every few years cuz I'd always forget my vitamins (b12d brain foginess)

[Laverdista in reply to Iheartb12]

Thanks. Have been supplementing my vitamin D for the last month, as it was quite low, so I'm hoping my levels have gone up, but will see when I get my blood test results this week.

[Iheartb12 in reply to Laverdista]

For me the times I have been d deficient it took 6 months supplementing at 50k iu per week. It was a long process so just be aware.

[Jillymo]

My breathlessness was due to high blood pressure.

It might be worth getting your BP checked.

[Laverdista in reply to Jillymo]

Thanks. I do have high blood pressure (see my previous post about it), which has got even higher since I've been injecting, but have never had breathlessness from it before.

[Jillymo in reply to Laverdista]

Are you on blood pressure tablets ? It is important your high blood pressure is treated. I dont wish to alarm anyone but I suffered heart failure.

[Laverdista in reply to Jillymo]

Thanks. Yes, on 3 hypertension medications. Am seeing my cardiologist this week!

[Jillymo in reply to Laverdista]

Pleased to hear your seeing you cardiologist at least you will be able to discuss your concerns and get them checked out.

Better to be safe than sorry.

[Tanitha]

Iron anaemia/low ferritin levels cause miserable shortness of breath. Have you thought of trying methylfolate? Sometimes it's worth trying a different form and also being aware of fillers/additives. Being chemically sensitive it's been a challenge for me but tolerate Nutri Advanced Vitamin D3 with K2 and BioCare Nutrisorb Methylfolate quite well. Both are drops and it's easy to adjust the dose. Generally I have found when introducing something new I can't take the full recommended dose and need to increase gradually.

[Laverdista in reply to Tanitha]

Thanks. Have actually been trying D3 drops to titrate, as felt a bit odd on the mega-dose straight away. Doesn't methyl folate cause anxiety in some people? I've held off from trying it so far as my anxiety is off the charts as it is.

[Tanitha]

I think much depends on what is causing the deficiency and how you absorb folate rather than one type causing a problem. The Cytoplan/Dr Morris video which has been posted on here recently (vimeo.com/891099138/4150efa... explains it well but there are many reports on it's success in helping to treat anxiety.

[wedgewood]

Have blood test and see if your red blood cells are the right size

.. Use an Oximeter ( Amazon have them ) to see what your blood oxygen level is . Low blood oxygen level will leave you breathless . Doctor will have to investigate if it is low ( Bradycardia )

[Litatamon]

What about thyroid levels? Thyroid issues can cause it on their own, as can poorly placed nodules.

Have you ever had a sleep study? Sleep apnea can affect it as well.

All the best to you figuring it all out.

[Laverdista in reply to Litatamon]

Hi. I had a CT scan a couple of weeks ago, on which was highlighted 'thyroid goiter'. But my GP hasn't followed up on this because my tsh was normal.

[Litatamon in reply to Laverdista]

Did your GP schedule a fine needle biopsy? Did he or she give any other information? (The nodules might have been too tiny or not suspect in consistency to deem a biopsy, that is why I am asking to make sure you are covered.)

---------

I had a thyroidectomy because two of my nodules were not positioned well & were larger than the others. One almost 4 cm & the other 3.2 cm.

(Goitres/thyroid nodules are not uncommon & are not always an issue)

I could not breathe properly & was choking at times.

Also, my thyroid came out totally diseased (surgeon's words & backed up by pathology). Yet my thyroid panels were always 'fine'.

Here is something you can try at home to see if there is an issue of lack of space -

Raise both your arms over year head. Lower your chin to your chest. And then try to talk.

You should be able to breathe & talk no issues.

My endocrinologist did not tell me what she was doing, and I was shocked not being able to breathe & what did/could come out re:talking sounded like the devil.

This could be anything but a goitre positioned poorly could be an issue.

[Laverdista in reply to Litatamon]

No, my GP didn't do any follow-up! However, my (private) cardiologist suggested I go into his hospital this week, so that they can do a full top-to-toe checkover, with all the different medical specialists on-hand to discuss a holistic diagnosis. He knows that B12 deficiency is responsible for a lot of my issues, but they still want to investigate everything, which I'm happy with (also happy I'm not paying for it hopefully).

I tried your 'arms up chin down' test and I can still talk, but it makes me cough. I had noticed that swallowing food has become more difficult over the last year - I put that down to B12 but maybe not...

[Litatamon in reply to Laverdista]

Happy to hear that you are being looked after by your cardiologist.

The test should not produce coughing, so maybe there is some obstruction slightly forming, with the goitre (I just tried it myself & all clear).

Have you had anyone notice a change in your voice?

A b12 shot can cause wheezing afterwards for a bit (I myself get that sometimes), it is documented. But that is different from breathlessness.

Here's to you getting some clear answers soon. 🌺

[JHEW0836]

Can you describe the breathlessness? This has been a really troublesome symptom for me for over 2 years. I thought more frequent B12 injections would help, but it hasn’t really made a difference. My folate is good and my vitamin D is ok, not optimal but it’s still ok. Ferritin is usually around 100 so it’s not that. I would describe my breathlessness as not being able to take a deep breath no matter what I’m doing. My blood oxygen level is usually 99-100. I’ve been to a pulmonologist and cardiologist and I checked out fine there and my thyroid is good.

I notice that after I eat it gets worse but have also been checked for a hernia which I don’t have. It drives me crazy that I can’t figure out what is causing it. Hopefully you can figure out what’s causing your breathing issue. I can totally sympathize with you as it is an awful symptom to manage.

[Laverdista in reply to JHEW0836]

Thanks. In my case it feels like a tight restriction just below my ribcage, almost as if it's my diaphragm. It's been really bad today! 😔

[JHEW0836 in reply to Laverdista]

I get that sensation as well. Chest tightness that comes and goes. I thought something was wrong with my diaphragm and asked to have a fluoroscopy done. Nope, diaphragm is working properly. I am truly at a loss.

[Bea-Pea]

Have you had a FBC test recently? Low serum ferritin / anaemia can cause breathlessness. I have had low serum ferritin but no anaemia for at least the last 10 years. Unfortunately, the NHS only prescribe oral iron which will take an age to have any effect. I have had a private iron infusion. Three weeks in and I finally feel ‘normal’ again. This may or may not be the issue but worth investigating ☺️

[Laverdista in reply to Bea-Pea]

Thanks. I did also notice that low iron can cause loss of appetite, which is one of my issues at the moment, as well as a burning sensation in the chest, which is another symptom! I did a blood test last week, and should have the results tomorrow or Tuesday, so it will be interesting to see what the results are. My last blood test 6 weeks ago showed normal iron and high ferritin, but the high ferritin could have been inflammation, and I've now self-injected approximately 15 times since then!

[Ryaan]

Breathlessness is most common with low iron levels and low folate levels, low B12 also.

When these 3 are in good range the air hunger and breathlessness goes away.

[Rubyroo10]

I have self injection of b12 hydroxocobalamin every 2 weeks and take vit D every day. This seems to suit me and keep me stable. I guess my point is we are all individuals and it takes time to sort it out. I don't take folic acid at all as at the start of self injection I did but it made me feel down