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Pernicious Anaemia Society

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Hi I'm new here and would really like some advice πŸ™‚

Connolly77 profile image
Connolly77
β€’10 Replies

I was diagnosed with B12 deficiency just before Christmas and am actually starting my loading doses later on today. I'm feeling a little deflated as I'd initially hoped that I would feel better quickly but the more I've read about them, the more it seems that they take months or even years before people actually feel an improvement. My symptoms started around 6 months ago and to begin with I constantly thought I was getting a cold as was feverish and shivering, temperature all over the place. However the cold never materialised. Has anyone else had fever as a symptom? Athough I've developed other more typical symptoms which fit with B12 deficiency over the past 6 months, I would still say that it's my main symptom and is getting worse, to the point of being quite debilitating and having to take paracetamol several times a day (something I'm not happy about doing) just to control my temperature. Although it helps me function and feel better I often come out in hot sweats after I've taken it. Does this ring true for anyone else? I have no idea what my levels were in the results but will ask for a full printout later as I'm keen to learn more about what exactly is going on. I'd never have believed it was possible to feel so ill from a vitamin deficiency, and am indeed wondering if there is actually more to it. Any advice, support or comments from anyone with a similar experience would be much appreciated! Thank you!

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Connolly77
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clivealive profile image
clivealiveForum Support

Hi Connolly77 do you know what your Folate (Vitamin B9) level is?

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

As to how long before symptoms improve a lot will depend on how long you were B12 deficient. There is no simple formula or timetable or a chart of our reactions to the treatment as we are all different.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

Connolly77 profile image
Connolly77β€’ in reply toclivealive

Thanks clivealive, I've no idea what any of my readings were but will definitely ask for details of all my blood results later and ask about this balance you mention too. I'd say that all of the folate deficiency symptoms could apply to me!

Nackapan profile image
Nackapan

I was worried at the amount Iof paracetamol I was taking at one stage as it was weeks. All I've read and asked gp at time that it wasn't a concern. I took it as I really felt it eased headaches and controlled hot flushes /sweats and calmed the nervous system. . For me on hindsight it was part of the healing process for nasty neurological symptoms coming to the surface. after my first loding doses in November. I've at present re started every other day b12 injection at the surgery . My symptoms are improving . I am however having sweats Thudding heart. Exhaustion but not every day to the same extent. Out of bed until early evening at least. Abke to have a short walk. Vision still down despite stronger prescription and annoyingly light sensitive. So like Clive alive says it depends on your starting point and your own body. I had help from all on here to have more patience as I was told I'd be fine after the loading doses at the doctors. I wasn't. All I can say is take one day at a time. Rest , try and stay positive and wait.

I'm getting blood results back this week to check folate and fbc.

Hope you feel alot better soon

Connolly77 profile image
Connolly77β€’ in reply toNackapan

Thanks Nackapan, I am encouraged to hear that you have been able to take short walks. I used to run and do yoga daily and am desperately hoping to be active again soon! (Although I realise it might be a while before I'm running again)

Jessie8 profile image
Jessie8β€’ in reply toConnolly77

Hi Connolly77

I hope you feel better soon. I also used to be active, running 3 times a week and gym, now I can barely muster the housework. It’s so very frustrating as my Dr will not give me any more injections as my levels are β€œnormal.”

Connolly77 profile image
Connolly77β€’ in reply toJessie8

Thanks Jessie8 , I really hope you feel better soon too! I've noticed a lot of people self inject, is that an option for you? I've not looked into it yet.

I read tons of posts here and I've never heard of anyone have fever as a result of B12 deficiency. As a matter of fact, vitamin deficiency makes you feel cold. You might have a vitamin C deficiency in combination with various other vitamins. I would definitely get on a multivitamin for a while but get tested for serum B12 first. Get blood work done, you might have some sort of infection and the elevated white blood cells will show it.

Foggyme profile image
FoggymeAdministratorβ€’ in reply to

m7m2018...B12 deficiency can indeed cause a low grade temperature...it's often reported in the forum..

Connolly77 profile image
Connolly77

Thanks Hidden I'd say it was like feeling freezing like you do when you're about to come down with the flu but then generally followed by a high temperature and every night I'd wake up absolutely drenched in sweat. I suppose there could be a hormonal element (I'm 41 so my doctor would probably dispute that) but it's possible. Maybe a coincidence? Or maybe there are links between B12 deficiency and perimenopause? I will look into it!

pollianna profile image
polliannaβ€’ in reply toConnolly77

Even Oprah was given the run around when she presented with flushes at a similar age to yourself. She addressed Peri-menopause on a show. She said Im not being funny but Hell I'm Oprah and I am being dismissed, how hard must it be for the thousands upon thousands of regular women out there.

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