Very new to all this!

[JodieLouise]

Hi, I’m Jodie I’m 24 and I’ve recenetly been diagnosed with B12 deficiency. (Sounds like I’m at an AA meeting!)

It’s all still very new to me and I’m still learning a lot about the condition.

I’ve had my six injections and I’m getting my first ‘3 month’ one tomorrow. The past week I have been feeling extremely tired again and my legs have began to itch (which was also a symptom for me before I knew I had B12 deficiency) I understand that it’s normal to be able to tell when the next injection is due?

Also, when the doctor diagnosed me she mentioned the words ‘pernicious anemia’ but I can’t actually remember her saying if I had that or just B12 deficiency but she believes my body does not absorb the vitamin? (Brain fog!)

I’d really love to hear people’s stories and experiences of living with B12 deficiency and any advice would be greatly appreciated!

Thank you!

[Gambit62 Administrator]

PA is the most likely cause of a B12 deficiency - its an auto-immune condition in which your body attacks the mechanisms that allow your body to absorb most of its B12 from your food.

Most people on hear find their symptoms coming back well before 3 months and there isn't really any scientific evidence that anyone has been able to present that supports 3 months. If your legs are twitching that should count as neurological involvement and the BCSH standards and NICE standards would be for maintenance shots every 8 weeks. May be worth speaking to your GP about that.

Please feel free to take a look at my profile which tells my story - click on my 'picture'

[JodieLouise in reply to Gambit62]

Ah thank you so much, that’s some really helpful information! I appreciate your time.

[PamBow in reply to JodieLouise]

Hi JodieLouise,

Late last year I was diagnosed with PA..sluggish thyroid and Vitamin D3 deficiency. Hence started on 3 monthly injections of B12( wasn’t until later I found out I hadn’t had 3 loading shots I was supposed to have!!) 50 mcg Levothyroxine and a course of vitD3 tablets.

My symptoms always seem to return after 6 weeks and so a lovely locum doctor after checking with haematology dept at the hospital ,who said it was a common occurrence for symptoms to show themselves beforehand and that it was ok for me to have B12 inj at 6 weeks.

My systems when showing are depleted energy, brain fog , a slight whooshing noise in my ears at night, short sharp electric shock type feelings in the ends of my fingers, paranoid feelings that people are getting at me etc etc. These symptoms can also be due to vitD3 deficiency.

I am waiting for blood test results to see if my folate and ?are low.

Welcome to this site , it’s good to know you are not alone in all of this...

Pambow

[JodieLouise in reply to PamBow]

Hello!

Oh wow, that’s a lot! I can definitely relate to the brain fog, I was starting to worry about it before I was diagnosed but it makes sense now!

I hope everything goes well with your blood test results!

Thank you for sharing your experience with me, it really is nice to know you’re not alone!

[clivealive Forum Support]

Was your Folate level ever tested JodieLouise ?

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.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years and I too suffer a return of some neuropathy and exhaustion in the run up to my next injection - which incidentally I had this morning.

I wish you well.

[JodieLouise in reply to clivealive]

I believe it was tested but I can’t really remember what the doctor said!

When she told me I had B12 deficiency and would need injections for the rest of my life I went into a bit of a panic as I used to have the most horrible phobia of needles so everything from that initial meeting is a bit of a blur!

I plan to ask a few more questions tomorrow when I go for my next injection.

Thank you for the information, I appreciate that!

Thank you, you too!

[Marz in reply to JodieLouise]

You are legally allowed to have copies of all your results with ranges. I write on my copies - the doses of things I am taking to include all supplements and most importantly how I am feeling

All GP surgeries should allow you to sign up for access to your records - including test results and ranges. Do enquire at your surgery - most have been far too slow in implementing this important procedure. They are YOUR results after all

[JodieLouise in reply to Marz]

Every time I go to the doctors I plan to ask to set up access to my records online but I forget every time!

Thank you for your advice!

[Marz in reply to JodieLouise]

You can phone the surgery and request copies of all your results. Tell them you will be in to collect them in a couple of days They can no longer make a charge - since the end of May

[Hidden]

My daughter was diagnosed about your age JodieLouise and she Is fit and healthy and was 50 last year. She has had and brought up two boisterous boys to adulthood and coped with her husband having a serious brain injury and it’s aftereffects. She also has had a successful career and now works as a school receptionist 4 days a week. She is a powerhouse and with a careful Self Injection routine keeps the PA at bay. Have a good life JodieLouise.

[JodieLouise in reply to Hidden]

Wow, that’s amazing, sounds like an incredible woman! Thank you for sharing her story with me.

Thank you, I wish you and your family all the best!