a question about symptoms being really bad then better day to day

[kimmyy]

One of my worst symptoms is shortness of breath . I am still working with my dr. to figure out if due to my low b12 if that is the cause of all my symptoms and general ill feeling. Is it typically to have better days then others due to low b12. i am not having injections yet i am just taking b12 over the counter at this point. My breathing yesterday was ok not good but ok and today its been horrible. I find this has been happening with all my symptoms and is worse if i dont get enough sleep. Has anyone else experienced this.....Thank you

[maiken]

When you have low b12, you are not always able to store as much iron, as your body needs. My breathlessness was due to low ferritin (my level was 22, but look for levels below 50)

Maybe you dont have the same problem, but worth checking is: folate, ferritin and vit D

[indywindy in reply to maiken]

Hi Maiken. I commented to you somewhere here, as I mistook you for being the one with the initial question. Sorry, Kimmy😉 og undskyld mit rod, Maiken.

[indywindy]

Yes, I'm constantly aware of my breathing, having a sensation of not having breathed properly, which makes me deliberately take deep breaths many times every 5-10 minutes. I've read that for people with PA it's called "air hunger", so try to Google this plus "pernicious anemia". The doctors I've asked don't know of this symptom, but relate it to stress or simply reject it as a related symptom! I haven't managed to find anything on the Danish medical info sites (I'm also Danish 😁). Personally I find it hard to do my running, cause my breathing tends to be catastrophic or at least in alarm. But also wake up feeling like I have to take deep breaths. So. . .I know exactly how you feel!

I am struggling with keeping my ferritin high enough (above 70, as I get symptoms below 40-50). Kraüterblut taken with vit C has been best so far, giving me no problems to my stomach, and more steady ferritin levels, if I take it daily. Still air hunger though!

Du er den første dansker, jeg har mødt her med PA. 😉

[Hidden in reply to indywindy]

I had iron deficiency and very low ferritin for a while and that caused breathlessness related to movement. I could take deep breaths but had to lie down after climbing a flight of stairs to get my breath back. 2 blood transfusions and iron tablets dealt with that.

What I have had before and after that is the feeling of not breathing properly and then suddenly doing an involuntary gasp, which is entirely unrelated to movement. I was told it was anxiety breathing initially, but I find it difficult to get a doctor to listen to a description of what it's actually like, and I don't think they understand the difference, which is very clear to me.

[evergreen11 in reply to Hidden]

Hi l am writing on behalf of my husband who has a b12 level of 111. Admitted to A&E and acute diagnostics ward. He was discharged from A& E because they said nothing was wrong. I lied to Secretary and said that A&E ordered him to have blood tests. Thank god i lied.

As they said his b12 was 111. His breathing problems have been horrendous.When it hits he cannot tske a deep breath through his nose and has to mouth breath. GP said I'll put you on antidepressants my husband said no way. When carrying out activities he becomes short of breath once he felt like he was going to die. Also,cold hands cold feet, dizziness, terrible headaches, restless legs and depression, lack of cognotive thought.

He he has had b12 loading injections.He came out in acne, also his whole body went ice cold. He was shivering. After 4th loading injection.

How do you know you have it iron defficency. What should i look for in his blood results. Thanks xxx

[Hidden in reply to evergreen11]

It is ferritin levels and haemoglobin count. I hadn't had a blood test for a while, but had tests for breathlessness. They discovered I had a problem with my diaphragm, but it didn't account for how bad I felt. I could barely walk any distance, had to lie down after doing anything, taking big heaving breaths through the mouth, dizzy all the time, restless legs, but not cold hands etc.

The morning after the test the registrar was on the phone telling me I needed to be in hospital to have a blood transfusion. They said my haemoglobin count was 6, or sometimes down as 60, but should be 11, or 110 at the lowest. Ferritin is where iron is stored, mine was 3, but I had to take iron tablets till it was 100. They can also diagnose it if your Mean Corpuscle Volume is smaller than average, called microcytic anaemia

I think they would have picked up iron deficiency if he had a Full Blood Count. It is much easier to diagnose than B12 deficiency. I think I got so bad because despite telling my GP how I felt he didn't order a blood test, and left it as a shortness of breath problem for the hospital to identify. I think there are problems if you have both iron deficiency and B12 as the symptoms of one can overlay the other. My B12 was 110 after I had started taking iron tablets, and as one set of symptoms receded another lot came out.

I hope this is helpful

[evergreen11 in reply to Hidden]

Thanks so much xx

[Allyson1 in reply to evergreen11]

My initial loading doses of (methyl) b12 and b9 were awful- shivering, acne, muscle cramps, psychiatric changes, etc- it was awful.

I think I'm part this was because I was so malnourished overall. I wasn't absorbing much nutrients from foods. Now my levels are better (especially magnesium and potassium) and the b12 shots go easier.

[Ktululady]

Do you take other supplements? I need Magnesium and Potassium. The potassium helps my breathing but you have to be careful not to have too much, best to get it from food, I just take a supplement when my breathing gets bad and I get twitches.

[Gambit62 Administrator in reply to Ktululady]

thanks Ktululady

Kimmyy - please check with pharamacist and/or GP before supplementing with either magnesium or potassium - magnesium supplements cause diarrhoea in a lot of people and it is possible to overdose on potassium.

There are a number of foods that are rich in potassium - such as bananas and oranges that are probably better ways of getting extra potassium

[Hidden]

Shortness Of Breath Is One Of The Symptoms Of Pernicious Anemia...I Was Diagnosed With Asthma 30 Years Ago...Had Every Symptom...Just Got Diagnosed With Pernicious Anemia This Past Friday...I've Been On B-12 Shots Weekly Since Last August...My New Gastroentrologist Is Keeping Me On Shots For Good...Since My Shots I No Longer Have Shortness Of Breath...Though I Still Have Neurological Damage...

[Ryaan in reply to Hidden]

You been on weekly shots of B12 since August ?

How did your doctor agree to that ! Are you in uk, because here you'll be very lucky to get more than 1 shot every 3 months, after 6 loading doses. The doc don't want to know anything about your symptoms,

Which country are you in ?

[Hidden in reply to Ryaan]

I'm In The United States...I'm So Sorry UK Is Either Behind The Times Or Unsympathetic...Maybe Your Insurance Companies Are The Problem...You Can Not Overdose On B-12 What Your Body Doesn't Use Your Body Gets Rid Of...So He Said My Levels Will Be Off The Chart But It Can't Harm Me...Also When I Had My Endoscopy They Sedated Me But United States Doesn't Use Nitrous Oxide...

[Ryaan in reply to Hidden]

Thanks for replying. In uk we don't have insurance companies (I assume you're talking about medical insurance which is a very rare case here. If you're working you just pay for your prescription (pay for mess), and if you're not working you're entitled to free medication. Hospital treatment is always free.

You can't choose what to have from your doc and they go by strict guidelines so they decide what you have and how often. Getting B12 injections here is very hard as you can't buy anything injectable over the counter, you have to have a prescription from your doctor and in most cases if your B12 is very low or you have absorbtion problems they give you 6 loading doses and after that it's most likely 1 shot every 3 months. The doctors are unsympathetic and also know very little knowledge about B12 and stick to government guidelines which is 1 shot every 3 months.

It's terrible and very tough to get more.

That is why I chose self injecting, and you have to order B12 injections from outside of uk online and kind of 'treat yourself'.

Wish you best of health.

[Hidden in reply to Ryaan]

You Have Two Options...Move Here & I'll Hook You Up With My Medical Doctor Or Order It Online & Give Yourself A Shot...Trust Me I Had To Fight For This But I Wouldn't Take No For An Answer

[Hidden in reply to Ryaan]

Oh You Do Already Order Online...Read Fast At Work...♡

[MariLiz]

Breathlessness was my first symptom, as I go to .Yoga classes, and realised I couldn't do the breathing exercises. I've been on injections for more than two years, and getting the injections every six weeks now. It has helped me enormously, and I don't get out of breath now. The gasping for air is known as "the sighs" and is a well known symptom of low B12.

[kimmyy]

thank you very much everyone . sometimes i think i am losing my mind. as a matter of fact i have two names on this site and im not really sure why. i cant remeber things is another big symptom of mine. i have burning feet shortness of breath blurred vision and so many other symptoms. i could deal with everything else if i could just fix the breathing. i get test results on yet more bllod work. i have had so many test and the thing with that they keep finding things wrong but we havent got the b12 figured out yet. they check my stomach with ultra sound and found something to do with my bile ducts inflamation and a blockage. i got a phone call friday night about all that so i know very little at this point . i know i have to be hospitalized for it also they found a mass on my breast from my mammogram. im like enough already haha just figure out by b12 breathing and fix it and stop finding al this other stuff. its been a struggle and i just wat to breath good again. i did get the book could it be b12 and just started reading it. i am going to tell my dr. of all my responses so maybe he will take me more serious where i can show others have had the same issues as me. i wish you all luck and hope we all figure out what works best for us all....thank you

[Brian77 in reply to kimmyy]

Shortness of breath was my biggest problem. Stopped very quickly after starting injections. Didn't see your labs, but symptomatic PA should try a series if injections to start. Just faster progress compared to tiny fraction absorbed in the gut.... Doesn't solve all your issues but makes surgery safer if that is looming.

[Allyson1 in reply to kimmyy]

You're not crazy! It's impossible to think straight when you're deficient, and everything is so much harder.

[kimmyy]

I had b12 ferritin, folate the full iron panel i asked for that because i have the nurological symptoms , a full cbc and something else to show how i absorb tings. i will have my results tomorrow and will be back with a million questions i am sure. i wish and hope the dr, with humor me here and treat my symptoms and not so much worry about the numbers as i was told in another post...again thank you all

[cdragin]

I also find that the severity of my symptoms (mostly fatigue) goes up and down. Not 100% sure that it's due to B12, but I definitely find that my energy level and ability to focus are variable and undependable. I would expect them to be great right after a shot and then slowly decline, but that has not been my experience.

[terrybraden]

Hi kimmyy

Symptoms are:

Fatigue

Breathlessness

Sore Red tongue

Pins and needles (tingling)

Insomnia

Tinnitus

Dizziness

Depression

Anxiety

Peripheral neuropathy

Vision problems (floaters)

Gait problems

There may be more. Check with Mr. Google if you can. Good health to you!