B12 deficiency. ???

[Rachel20]

Hi Just needed some advice i have a folate deficiency and am currently taking folic acid.I was told my b12 was fine.But had an appointment with a dietician today who shown me my b12 results.I was quite suprised as seeing the table of my resukts on a b12 table mine was almost at the bottom.I am quitr concerned by this.When i was told my b12 was fine i had no idea that it was almost at the end of the table.I am going to ask for a print out of my recent blood results.I am extremely exhausted.Have had pins and needles in my feet since last summer and have just started to get pins and needles in my hands.Feel dreadful the exhaustion really isnt normal for me at all.Everything is such an effort.I just wondered if anybody had been at the very low end of the b12 table after bloods and been told that its fine.Or if anyone has been right at the end of the table and been told they should have injections.I am taking folate and am concerned as i know if your b12 is low you shouldnt take folic acid tablets before injections.Surely the b12 level is different slightly for everyone.I must only be 17 points on my bloood test above nhs guidelines.Thank you

[Nackapan]

Yes you are right. Folate after b12.

As 'in range ' at present ' shoukd be okay.

We do all function at different levels

Discuss again.

Go by symptoms

[Rachel20 in reply to Nackapan]

Yes it is the symptoms that are making me question this thank you

[DiNL]

hi Rachel20,

I had a B12 level of 152. The bottom of our baseline here in Holland was 150. My doc also said I’m my B12 was within average range. But I had terrible symptoms too. Eventually got tested for antibodies against the intrinsic factor and parietal cell antibodies. I was diagnosed with PA. Then I started injections. There are other people on this forum who are very well educated in PA and b12 deficiency that might be able to offer more advice. Im still learning about it all. But I would advise you to get a copy of all your blood work and check your iron and ferretin. Also ask to be tested for intrinsic factor, I know not everyone tests positive and some people have PA but still test negative but it might help. These tests need to be done before you start taking supplements (I believe).

[Rachel20]

Yes I am going to get a copy.I do feel so unlike myself and quite dreadful.The symptoms are making me question everything.Thank you

[Cherylclaire Forum Support]

Serum total B12 is measured in ng/L or pmol/L ( 1 pmol/L =1.355 ng/L). The range will depend on where you live and/or what laboratory tests the blood.

I was treated for B12 deficiency at 196 ng/L because the range locally was 197ng/L - 771 ng/L. Lucky.

It still took a very long time and a lot of B12 injections to improve.

Folate and ferritin were low but within range, treated with 3 months of supplements because my hair continued to fall out and gums were bleeding. Vitamin D (along with Raloxifene) on prescription as I was found to have osteoporosis of the spine. Thyroid can also struggle - so worth checking too. These are the most common other areas affected.

Folate should be treated after B12 deficiency addressed.

[Rachel20 in reply to Cherylclaire]

Thank you.Havent got my actual ranges yet but am concerned my b12 does need treating with my symptoms and I have been given folic acid tablets.Dietician pointed the low range out to me.Gp said it was fine but it does not look fine to me especially with symptoms.i have vision problems blurry eyes hard to focus..pins and needles in feet first now in hands,feeling faint and dizzy,dry hair,nails wont grow,worrying exhaustion,weight gain but not eating much and headaches.And I feel so weak.I put the washing out and holding my arms up for a second is hard.Its just not me at all.It started last summer and has gotten so much worse.Also can feel heart palpitation some times.Do any of these symptoms correlate.Also short term.memory I ve noticed.Wondering if j should take folic acid or go speak to the gp again first xx

[Wwwdot in reply to Rachel20]

Hi Rachel

You describe exactly how I was in November last year - even down to the washing line!

I was diagnosed with B12 deficiency. I now self inject every other day, take folate and Vitamin D on prescription and I am 70% better.

I consulted a PA specialist in Cambridge and now he advises my GP. I buy my own B12 and self inject. You can’t overdose on B12 and it’s a long long process of recovery.

B12 is your key so find a way to get it. When you do your symptoms will get worse initially as your nerve endings will fire into life - it’s like popping candy within your body and I found it painful but it only lasted a few weeks and then into the sunshine of repair and recovery!

Don’t give up. Best of luck.

[Rachel20 in reply to Wwwdot]

Oh thank you for your reply...am quite tired of all of this .Am getting much worse.Am going back to my gp as It is a huge problem.Everyday is a trial.Good to know you can feel better.Glad you have gotten a bit better.Thank you ao much for your reply x

[Cherylclaire Forum Support in reply to Rachel20]

Yes, yes and yes. The problem I found was that some GPs (and consultants) have a much shorter list of what B12 deficiency symptoms are. These are all quite general symptoms which could belong to several conditions/illnesses - which of course then need ruling out one by one.

You might have thought by now that a wide range containing some highly-specific symptoms be immediately recogniseable. You may get further by printing off a symptoms list by either the Pernicious Anaemia Society or B12Deficiency.info and highlighting all those that are familiar problems for you. I also kept a daily symptoms chart - for myself to recognise improvements or looking for patterns relating to injections, and for GPs or consultants. Also because my memory was so appalling -and so questions from medical professionals difficult to answer.

Holding my arms up made them weak and shakey. Decorating the Christmas tree took a couple of days with a lot of teabreaks (still did it!). Legs shook too - standing at the kitchen worktop preparing dinner was a difficult task, standing at a bus-stop required a prop (bus-stop sign) to hold me up.

These everyday problems don't happen now, unless I try to reduce injection frequency- so I don't any more. It takes a good while to get there.

[Rachel20 in reply to Cherylclaire]

Thank you..going to ring gp back in the morning and get an appointment it really has all gotten so much worse actually.Thank you for your reply xxx

[Cherylclaire Forum Support in reply to Rachel20]

Good luck. Let us know how it goes.

[KBird01]

Just wondering if you've had your thyroid checked, as there is quite a crossover in symptoms of B12, folate, D and thyroid issues.Good luck with it all. I can relate first hand to what you're experiencing. 🤗

[Rachel20]

thank you.Yes I had ood done with thyroid being one as have a huge proportion of family members with thyroid.But when I asked gp said thyroids were not taken at hospital.Even though it was in form.About to get another one done.thank you for your reply

[Rachel20]

Ho everyone just got my results for b12 they are 268 ng/l.Ranges 211.00_911.00ng so near the lower end just not sure if that result could cause problems

Thank you