B12 deficiency

[Poodoo]

I have just been diagnosed with b12 deficiency and also iron deficiency. I was initially told I was not anaemic although I had large blood cells but gp said I had had these for some time which was normal for me.! My main symptom is complete lack of energy/lethargy. I struggle with memory and have tinnitus. I have become quite muddled, anxious and stressed. I am 51 and never felt like this before. I have not been feeling my self for the last year but the last 6 months have been terrible. I am having loader b12 jabs and on iron tablets 3 times a day. I have been told I will need jabs every 3 months. I have been taking lansoprozole 30g twice a day since 2012 and suspect this could be the cause of b12 deficiency. Should the gp have picked up on pa when tests showed large blood cells. How long does it take before you feel energised. Now I have been diagnosed is this for life. Are there any other supplements I could take that would help. Do I need to know what is causing deficiency. Gp has just said I need jabs but no other referrals. GP thinks anaemia caused by fibroid so I gave gynae referral. Oh the joys of being fifty!!! Any advice would be greatly appreciated.

[fbirder]

Low stomach acid would go a long way to explaining why you are deficient in B12 and iron. The low acid could be caused by the PPI you take and/or Pernicious Anaemia.

The large red cells could be caused by low B12, but low folate is another possibility. I would take 400 ug a day of folic acid.

Yes, the GP should have known that large red cells means macrocytic anaemia - and that the two most common causes are low B12 and low folate. You should have been tested for those immediately.

[Sleepybunny]

A bit tired at moment so not up to long reply. I have written some very detailed posts in past year, may be something useful in them if you search for my older posts.

Probably the two most important things I learnt from years of trying to find out what was wrong was

a) Always get copies of blood test results.

On some occasions I was told everything was normal but I found abnormal results when i got copies.

b) Some GPs/consultants do not have as much knowledge about symptoms , causes and treatment of b12 deficiency as some patients might think.

In my opinion it pays to be as well informed about b12 deficiency as possible.

Sources of b12 info

1) Pinned posts on this forum

I found the summary fbirder compiled useful. lots of quotes from mainly UK B12 documents. Useful when faced with a GP who has not done their homework about B12 deficiency. link to Fbirder's summary in third pinned post(last link in list).

2) BSH Cobalamin and Folate guidelines

b-s-h.org.uk/guidelines/

click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

4) PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone]

Some people on this forum join the PAS.

5) b12 Deficiency Info website

b12deficiency.info/

6) b12d.org

b12d.org/

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

8) Book "Could it be b12" by Sally Pacholok and JJ. Stuart

9) When I first joined the website, i learnt a lot from reading other people's threads.

"Now I have been diagnosed is this for life"

If you have a definite diagnosis of PA (pernicious anaemia), it is a lifelong condition that requires lifelong injections of B12. There are other causes of b12 deficiency besides PA that require lifelong B12 treatment as well as some causes that may be temporary. May be worth talking to PAS.

Did you have an IFA (intrinsic Factor Antibody) test? This can help to diagnose PA. It's still possible to have PA even if IFA test is negative. BSH cobalamin and Folate guideline s mention Antibody Negative PA.

Link to flowchart in BSH Cobalamin and Folate guidelines

stichtingb12tekort.nl/weten...

"Should the gp have picked up on pa when tests showed large blood cells"

I'd be surprised if they did not consider it as a possibility.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

[Sleepybunny in reply to Sleepybunny]

I'd be surprised if they did not consider it as a possibility.

"I have been told I will need jabs every 3 months"

It's vital to get the correct level of b12 treatment. In UK if you have neurological symptoms, you should get loading doses every 2 days for as long as symptoms continue to get better (could mean injections every 2 days for weeks even months) then injections every 2 months once symptoms stabilise.

"struggle with memory and have tinnitus"

Memory problems and tinnitus are usually considered to be neurological problems.

Inadequate B12 treatment could potentially lead to permanent neurological damage including sub acute degeneration of the spinal cord (SACDS).

Have a look at these B12 deficiency symptoms lists. Do you have any of the neuro symptoms?

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

If you have neuro symptoms, have you been referred to a neurologist?

I am not a medic just a person who has spent years trying to find answers.

Sorry thought this would be a short post.

[Gambit62 Administrator]

It can take a while to feel better - although some people also feel improvements quite quickly - it basically depends on what is causing the symptoms you have and as some of the symptoms could be the result of interactions in a number of the systems that use B12 it could be that you see some improvement now but other elements take longer.

The macrocytosis - large blood cells - will take a few months to clear up - as the old red blood cells are replaced by newer bloods cells that aren't deformed - and as red blood cells tend to live for about 4 months that is why it will take a few months.

However, other symptoms eg around the role of B12 in recycling neuro-transmitters, may improve much more quickly. But if you have neurological symptoms that are caused by there not being enough B12 to maintain the protective layer around your nerve cells that tends to repair much more slowly.

If you do have neurological symptoms then the correct treatment per BCSH and NICE guidelines is loading shots every other day until symptoms stop improving (review at 3 months), followed by maintenance shots every 2 months - though even that isn't enough for some people.

Suggest that you look through the pinned posts for checklist of symptoms and then make a list of all your symptoms ... and then monitor how each is changing.

[Poodoo]

Thanks for the replies. I will speak to GP again re neuro issues to ensure I am getting the correct treatment. Seems I will need jabs every other day until no further inprovement and then 2 monthly jabs. At moment I am to have 6 loader jabs and then 3 monthly jabs. Is tinnitus really a neurological concern. I have had the tinnitus with other symptoms - extreme fatigue, lethargy, anxiety, depression, memory loss, generally very muddled and lacking focus and concentration. I feared I was getting early dementia. I have been so worried and if it hadn't been for blood tests for fibroid I would never have known I had a b12 deficiency. This is all very scary. What is more concerning is that GP s don't seem to be aware of the impact of b12 deficiency.

[Sleepybunny]

What is more concerning is that GP s don't seem to be aware of the impact of b12 deficiency

Agree with your concerns . I saw neuros, endocrinologist, rhematologist,, probably other "ologists" and only one individual out of the many, had any idea about impact of B12 deficiency. My insistence that B12 deficiency was a possibility was disregarded by all of them with the one exception. This was despite me suffering typical symptoms for many years. I saw more than one person privately thinking I'd be more likely to find someone who knew about b12 deficiency, I wrote several letters listing evidence of b12 deficiency and still drew a blank.

Hence in the end I resorted to self treatment .

As I said above, it's vital to be well informed about b12 deficiency due to some doctors appearing to need more info/training about B12. I think sometimes people have to be their own expert.

"Is tinnitus really a neurological concern. I have had the tinnitus with other symptoms - extreme fatigue, lethargy, anxiety, depression, memory loss, generally very muddled and lacking focus and concentration. I feared I was getting early dementia."

Have a look at the symptoms lists I gave links to in above post. in the PAS Symptoms Checklist, tinnitus is listed under neurological symptoms.

Do you ever get any tingling/pins and needles in hands/feet and elsewhere? Do you ever feel unsteady/have balance issues/vertigo?

link to old thread on HU about proprioception I started

healthunlocked.com/pasoc/po...

Link to another B12 deficiency symptoms list

b12d.org/admin/healthcheck/...

A few years ago I believe I had dementia type symptoms eg word finding difficulties, daft behaviour eg kettle in the fridge, left iron on and forgot about it etc. I was deteriorating gradually and I was scared. B12 made a difference but I seem to need huge amounts.

Some UK people are fine on the standard NHS B12 treatment for those with and without neuro symptoms but some people on this forum find they need more B12 than this.

I gave the following to my GPs

1) Copy of BSH Cobalamin and Folate Guidelines with relevant passages highlighted.

2) Copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I take a copy of the summary fbirder compiled (last link in third pinned post) to appts where B12 might be discussed.

Unhappy with treatment?

Writing to GP

b12deficiency.info/b12-writ... Point 1 might be relevant to you.

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

This is a charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

Some people find it helpful to take a supportive adult with them to appts when they need to ask challenging questions especially if the person is well informed about b12 and is willing to speak up for the patient.

Challenging a GP can sometimes affect the GP/patient relationship. I have been treated unkindly on more than one occasion and wish I'd had someone with me who was willing to speak up for me. I believe GPs are sometimes kinder when there is a witness present.