Symptoms

[Canarian]

I’m wondering if anybody gets the same symptoms as me. When I’m running low and need an injection or have just had one and waiting for it to take effect I find I have pains in middle vertebrae and also weird hearing. I have a strange sense of hearing volume going loud and then quiet like a pulsating in the ears. Almost a whooshing sound. It’s not all the time but eventually corrects.

[clivealive Forum Support]

Hi Canarian

Here is a list of P.A./B12 deficiency symptoms

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Ryaan in reply to clivealive]

Hi Clive

Have you or ever had Iron deficiency or unable to absorb Iron.

Doctor told my son (20 yrs old) that his Iron deficient and he may not be absorbing Iron. After a blood test he gave him Ferrous Fumarate 210mg one tablet daily for 3 months since February this year. Now he’s saying he still feels fatigued and didn’t when he was taking them so they worked.

He’s had colonoscopy and found nothing, so do you know if there’s any tests that should be done to find out that he can’t absorb Iron (what the tests are ?), or does he have to take the Ferrous Fumarate 210mg tablets for life.

He’s just started University and it’s affecting his studies and is

I would appreciate any information on this as to what tests can be done or should be done by the Gp.

Thankyou.

[clivealive Forum Support in reply to Ryaan]

The answer is Yes.

Back in the 1970s having got a diagnosis of P.A. my iron levels went up and down like a yo-yo. When down I would be prescribed 3 months of iron tablets and 3 months after stopping my level was down again. Eventually I was referred to the haematology department at Stoke Mandeville Hospital and was told categorically that I needed to be on iron for the rest of my life - the same as with the B12 - and I too am now prescribed one Ferrous Fumarate 210mg tablet every day.

Not being medically trained I don't understand the mechanics, but I guess that having had two thirds of my stomach removed at the age of 17 due to a perforated ulcer in 1959 has something to do with my inability to absorb iron naturally as well as causing the P.A.

Is your son able to eat "iron rich" foods? Perhaps he can raise his level naturally.

I wish you both well.

[Ryaan in reply to clivealive]

Thanks for your reply Clive. Yes he is able to eat Iron rich foods but what I wanted to know is “ what or how is there a way of knowing if your body is absorbing Iron or not ?’

He’s had 3 months of Ferrous tablets and in a few days (less than or roughly 2 weeks) he is feeling the symptoms again especially shortness of breath and fatigue, so what should he do as in eating Iron rich foods, having a blood test and continueing taking the tablets.

What should he do or “how” should he do this.

.......The combination of eating Iron rich foods...when to have blood test.. ..should he stop the tablets or continue. What is the way of doing these 3 things so he may know that he’s not absorbing Iron.

[clivealive Forum Support in reply to Ryaan]

Perhaps his doctor should refer your son to a haematologist - as was I all those years ago - I'm sorry I don't know the answers

[pvanderaa]

I found i would get thumping in my ears, especially with turning my head, when i took too much folic acid relative to my B12 level. I found it was a symptom that indicated that I needed more frequent injections.

Are you keeping a logbook of food and drink as well as meds?

I also developed issues with dairy and gluten around the same time as my B12D was found. The symptoms didn’t show up till 3 to 48 hours later due to the gut being involved. But the time delay really confused the isolation of the offending food.

[Canarian in reply to pvanderaa]

Thanks. That’s a better description thumping.

I was just interested to hear if anyone else suffered the same symptom when due for an injection. You’re probably right I need to inject earlier. Fortunately I can now do that as I can self medicate. I’m on 3 monthly injections but I do feel like I need one after 2 months. The fatigue, lethargy and tiredness start around that time. Plus the other symptoms like feeling depressed and memory problems too. And the occasional times of ear thumping

[pvanderaa in reply to Canarian]

I started with hydroxo in the UK on loading doses followed by 3 month 1ml of 1000mg/ml.

I used the logbook to convince my GP to first move me to 2 months and then to monthly before i moved to the USA.

Here my GP started me on monthly cyano and I used thr logbook again to convince him to move me to weekly.

I’m getting ready to ask for my prescription to be upped to 2x per week. I self inject half of my current 1ml on Monday anf the other half on Thursday mornings. This, i feel, gives me a more stable roller coaster ride abd seems to last longer. I aldo supplement with daily methyl sublinguals 2x 5mg at noon and 2x 5m at night. Along with folic acid, B6, B1, TMG, D3 and a daily multivitamin.

[Canarian in reply to pvanderaa]

Hi, that’s interesting. Here in Canaries I just ask the doc for a prescription and he writes it. For a price. But hydroxocobalamin isn’t normally used. It’s normally cyano. I managed to get hydroxocobalamin but had to buy 10 vials. I intend taking every 2 months now. In U.K. they would only do 3 months and wasn’t enough in my opinion. All down to NHS costs I reckon. I’m sure I’ll be fine on that dose. It’s all about what works. I injected with a cyano last month just to try it but I’m happier with the hydroxocobalamin. Seems to work best for me. Also get plenty of natural vit D out here!!

[pvanderaa in reply to Canarian]

The 3 months in the UK was for hydroxo.

For cyano you want to start at monthly injections

[Margaret-S]

Yes..I get similar weird effects too. It's very annoying. My central vertebrae is affected but I didn't connect the two because of my age. All the best Canadian 🌞

[Canarian in reply to Margaret-S]

Hi Margaret, I’ve always had some kind of neuro symptoms. Can be anytime not just when I’m low. Middle vertebrae and some soreness/discomfort in ribs. I don’t think it age related.

[Margaret-S]

That's exactly how it affects me too. Really painful achy ribs. Very uncomfortable. It took me a wee while to realise that it was mostly when I was near time for my injection. Sometimes there are tremors in my leg but they go away too.