Hi am new to this group thank you for allowing me to join. A quick rundown of my experience. I became ill in early March and thought it was covid. Symptoms as follows.
Skin was burning tingling all over. Lump in throat constantly swallowing and sore. Very week and fatigued. light-headed. But the biggest problem was anxious feeling constant. Flight or fright feeling at various levels upto a number of panic attacks. But its like having a panic attack that won't stop. This has been off and on for r months now. I have had cbt work that has helped deal with the panic. I have just had bloods done and told b12 level wass 400 and put on 5mg of folic acid per day. I have never experienced ilnes before I am 57 yrs old. Symptoms seem to be there as soon as open eyes at 4am and then calm down a bit in day and then start again about 5pm right upto bed at 10pm. I can't really describe how ill I feel but its all encompassing. I have had antibodies test for covid and its clear
Questions
Do you think a reading of 400 can make me feel this sick?
How long before the tablets will take to work?
Do you have any suggestions as to what else it could be and to ask doctors to look for?
I have had a headache since taking the tablet I'm on day 5
I have a very understanding wife but I feel I am putting to much on her. I also have 2 15yr old children which I try to hide ghis from. Its so difficult.
Thank you in advance and am so sorry for all your upsets
Written by
Barrymoore
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Have you had your intrinsic factor tested? Your symptoms are a lot like mine. My anxiety was through the roof for months before I was diagnosed with P.A. and started treatment. Now it’s still there but less so. It takes a while to get them under control but I’m getting there slowly.
From personal experience it is possible to have severe B12 deficiency with an in range B12 result but can be very hard to get GPs to consider the possibility of B12 deficiency if your results are within range.
The fact that the GP has put you on a 5mg supplement of folic acid suggests that GP thinks you are folate deficient. My understanding (I'm not medically trained) is that taking a high dose of folate is usually short term.
How long has GP suggested you take the 5mg folic acid for?
It is important that any co-existing B12 deficiency is treated at the same time as receiving folic acid treatment as there can be neurological consequences if a co-existing B12 deficiency is not treated.
See BSH Cobalamin and Folate Guidelines link and also Management section in Link about Folate Deficiency for more info.
If you get hold of your blood test results you could put them in a post on this forum but take care to make sure none of your personal details/names of GPs etc are included.
In relation to B12 deficiency, I look particularly at serum B12, folate, ferritin (or other iron tests) and full blood count (FBC).
There can be useful clues as to whether a patient has B12, folate or iron deficiency on the Full Blood Count results.
Vital to get adequate treatment for B12 deficiency as untreated or under treated B12 deficiency can lead to permanent neurological damage including damage to spinal cord.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, B12 articles/documents etc.
UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
This i all very helpful i have extracted questions to ask doctors on Tuesday to try and pin down what he is thinking.
I'm on day 8 of taking 5mg folic. I havd a headache most days now. I think things are changing as symptoms seem slightly less however this is normal cycle of good days and bad.
Welcome here. I’m pretty new as well, there’s lots of very knowledgeable people here. Sorry to hear you are not well.
Do you normally awake at 4 a.m. or is this new ?
Yes you can have B12 in normal range and still have a deficiency - Sally pacholok’s book p 11, “ 200 to 450” pg/ml is in the grey area and the threshold needs to be raised to 450 pg/ml.
Did you have a cortisol test as well ? Sorry, I know nothing about folate. That’s good that you have a very understanding wife and maybe your teenage children know that something is amiss. Maybe consider telling them that you are out of sorts and reassure them. 🤷♀️ They are not going to love you any less.
And on page 13 she says "we advocate treating all patients who are symptomatic and have serum B12 levels under 450 pg/ml" However, also on page 11, she also "we believe normal serum levels should be greater than 550 pg/ml... In older adults serum B12 levels should be maintained near or above 1,000 pg/ml". (She's not good on consistency).
I'm a 45 year old male who feels tired all day. My B12 is 560 ng/L - do I get injections?
I'm a 70 year old female with no symptoms and a B12 of 750 ng/L - do I get injections?
I'm a 30 year old male with no symptoms and a B12 of 200 ng/L - do I get injections?
Using what she recommends the answers are No, Yes, No and yes.
If you were to treat everybody who has a B12 level below 450 ng/L then you would have to treat about two-thirds of the population. Which is obviously nonsensical.
If you treat everybody below 450 ng/L who has symptoms - which symptoms? Fatigue? You'll be treating 30% of the population. (surveys show around 50% of people feel overtired). Macrocytic anaemia? Lots of people with a deficiency don't get that (or have it masked by a concurrent iron-deficiency anaemia). Peripheral neuropathy? There are over 80 possible causes, B12 being just one (and not the most common).
Any attempt to boil the whole thing down to just a number is doomed to failure. These are some of the reasons why I don't recommend this book and why I gave my GP a copy of Martyn Hooper's instead.
What you need is an intelligent protocol, like that recommended by Hull and East Yorkshire. hey.nhs.uk/wp/wp-content/up...
They determined what levels they needed to set so that they caught as many really deficient people as possible, but not too many people who are normal but have 'low' B12. They set the bottom of that range as 115 pmol/L - set so that only about 3% of normal people get classified as deficient. Then they set an indeterminate range from 115 to 150 pmol/L where only 10% of normal people will get classified as 'possibly deficient'. Above 150 pmol/L is 'normal'
People who are 'deficient' with symptoms get B12 injections for life.
People who are intermediate with symptoms get B12 injections. If the symptoms improve then they get injections for life.
People who are 'normal' but with symptoms get tested for hCys, MMA, and/or 'Active B12' and a referral to the relevant specialist.
No need to apologise. As I said, the whole passage is total confusion.
At least you didn't do what a lot of people do when they read that section and suggest that everybody with B12 below 550 ng/L should be treated. That's so common that a Daily Mail journalist once falsely attributed it to Prof David Smith of Oxford University. Of course, certain Facebook groups read this and before you could blink they were all telling their members that 'fact'.
I'm not that gullible. I emailed Prof. Smith who replied " I have no recollection of speaking to this reporter - she just made it up!"
Links often mention anaemia associated with folate or B12 deficiency. This means macrocytic anaemia, also known as megaloblastic anaemia. This is where red blood cells are larger than normal and function less efficiently.
Be warned that some GPs are unaware that it is possible to have B12 deficiency and/or folate deficiency without macrocytic anaemia being present.
B12 Deficiency and Mental Health
Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia
"My wife and daughter are both coeliac and therefore I do not share any of their symptoms"
Coeliac disease symptoms can vary a lot between patients.
Even if your symptoms are not the same as those of your family members, I would have expected your GP to test you.
NICE guidelines on Coeliac disease (see link in other post) suggests that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.
I had similar symptoms in April. Severe weakness and fatigue. the constant flight or fight. I was very deficient in iron and once that normalized I stopped getting that constant extreme anxiety.
Hope you get better soon. I also worry about bothering my family, but we must be patient with our body and the healing process, family is there to support. This is temporary, a positive attitude matters greatly.
So after taking 5mg citric acid for 8 days I felt really well, all I had was a background headache and slight dizziness.
I really felt good for 3 days including thd day the doctors rang me back. I asked him all the questions you all suggested.
I told him I felt well and it must be the citric acid. He disagreed with me and said its a coincidence. He said my citric acid was only slightly low and he was surprised his colleague prescribed it. He said all other bloods were normal and I don't have b12 issues.
Well 2 days latter I started to feel unwell again more constant headache very dizzy and anxiety. Last night going to bed was the same only to wake at 3am with skin burning and feeling unwell.
Temp normal lish 36.3 bit low but I noticed the sheets were damp where I had been sweating. Took 1 paracetamol read a book as best I could then fell asleep till 6
Questions
Yesterday I took a ultra vitamin d 1000 iu
Do you think this could have reacted with the 5mg of folic I took?
Do you think I should cut down say to every other day taking the folic acid.
Do you think I should request more tests? Bearing in mind he doesn't think b12 is the problem
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Help Please
MCH has gone over-range again, but ferritin low at 28, any advice appreciated please?
Advice on folic acid
Urgently need advice please
Advice please
