Newly diagnosed b12 deficiency advice please!

[Padders12]

Firstly I would like to say how impressed I am with everyone's knowledge. I think I have read most of the newbie advice but wanted to get some specific to my situation.

I think I have been exhausted since being pregnant with my son. He is 13 now! During pregnancy I had placenta Previa and was in and out of hospital with bleeding. I eventually had a Caesarian where they cut my placenta and I had a post partum haemorrhage. When leaving hospital they did say I probably should have had a transfusion and offered me one then but I was desperate to get home with my new baby. Even I assumed the exhaustion was due to being a new mum.

By 2010 I was fed up of being tired all the time and as my son was 6 and had always slept well figured it wasn't normal. I went to the GP who did a blood test and was told the results were normal. So I just carried on with my life of sleeping 10-12 hours a night and still feeling exhausted.

In August I started getting tingling/ numbness in my lips. It spread to my face, down 1 arm and then both arms and legs.

When I eventually got to see my GP he suggested a blood test. The results were 111 ng/l for b12. I am not sure of the range but the results say b12 <130 consistent with deficiency, b12 >160 deficiency excluded. He also told me that when I had my test in 2010 I was low as well. I got a print out which shows my level was 100 ng/l then! So frustrating that I have suffered for longer than I needed to. I guess most of you are in that boat too!

So I am thrilled I have an answer! It explains lots of other random symptoms like bleeding gums, difficulty concentrating, memory issues, difficulty swallowing etc. It may even explain my twice weekly migraines. I think I am lucky as I have not had neuro issues for long and hope that means it will heal quickly.

So the next issue is treatment!

I have had tests to try to identify a cause but with no luck. The anti tissue transglutnase level was <0.1 u/ ml with a range of 0-4 u/ml, plasma c reactive protein 6 mg/l with a range of 0-7.5mg/l. Can't remember which is for celiac and which is for pernicious anaemia! I know that the results for pernicious anaemia are not always reliable. My great grandma had PA and I know it can run in families but is that a bit too distant?

I also have suffered from IBS for many years so think it may be related to malabsorption. I had my ferritin tested which was 64 ug/l with a range of 11-307ug/l and folate was 3.8 ug/l with a range of 3.8 -25 ug/l ( in 2010 this was 2.5 ug/l with a range of 3-17 ug/l).

So my GP wanted to give me b12 tablets to take to see if my issues were diet related. I argued that I eat plenty of foods containing b12 and didn't believe it was and that I had been feeling increasingly worse over the last few weeks and it was affecting my ability to work. He relented and agreed to b12 loading shots. So then I tried to book them at the surgery. I ended up with 1 one week, one the next week, none the week after and had 4 last week. They had a nurse leave and could not fit them in!

So, my questions are..

What should I ask my GP for? I have read the bnf and nice guidelines. I am still having tingling and numbness so should i ask to be referred to a haematologist? But I believe it is probably caused by malabsorption so should it be a gastroenterologist ?

I am due to see my GP on 10/10 and don't know what he will suggest and want to be prepared. I am happy to self inject if need be as I never want to go back to the utter exhaustion again! But don't want to get in the way of a diagnosis.

I would be grateful for any observations or suggestions you may have and apologise for the extreme length of the post

Jo

[Gambit62 Administrator]

You have neurological symptoms so regime should be injections 3x weekly until symptoms stop improving (review at 3 weeks). Maintenance would be 2 monthly.

Suggest that you discuss the possibility of someone showing you how to inject yourself if there are problems with availability of nurses to do the shots - it would cut down on the cost to the surgery and the phials themselves are less than £1 each - some GPs are amenable so worth trying to ensure that you get treated in accordance with the guidelines.

Not sure what lab is saying >160ng/l rules out B12 deficiency - it certainly doesn't and is contrary to the current guidelines - though if it was done in 2010 may have been in line with the pre-revision guidelines.

Think you need to make sure your GP is aware that IFA coming back negative - which actually isn't one of the tests you have listed - is a long way from ruling out IFA as a cause as the test is notoriously prone to false negatives (40-60% of the time).

Although NICE guidelines are a bit confusing the BCSH guidelines are a bit clearer that the treatment for an absorption problem is the same unless the absorption problem is treatable - eg h pylori - in which case maintenance doses may not be needed once the infection has been dealt with.

C reactive protein is a test to do with infection and inflamation - so not sure what that was about.

This link explains the coeliac test

coeliac.org.uk/coeliac-dise...

[Padders12 in reply to Gambit62]

Thanks for the reply. Although the GP requested IFA test I can't actually see the results on my print out. Having had another look he didn't ask for full blood count but have the results?! Would it be included in them? Could it be called anything different?

[Gambit62 Administrator in reply to Padders12]

I wouldn't expect it to be in the full blood count - it would be called something that was based around IFA - intrinsic Factor Antibodies. May be that the lab weren't able to do the test for some reason - but that should be in the report if it was the case.

[Padders12 in reply to Gambit62]

It doesn't say anything about not being able to do the test. I have the copy of the blood test request and it is definitely on there. I will speak to the doctors in the morning about getting the test done. I will also have a read of the bcsh guidelines.

I did suggest that a friend who injects her daughter do my injections but was told that as my blood cells weren't affected it didn't matter about the speed of the loading doses. I have since learned so much more reading the advice from you guys I will be better prepared next time!

[Gambit62 Administrator in reply to Padders12]

oh dear - confusing B12 deficiency and macrocytosis.

Point your GP in the direction of the BCSH guidelines - the fact that you have neurological symptoms is actually the thing that is pushing up the urgency of the loading doses.

25% of people who are B12 deficient present without macrocytosis.

[Gambit62 Administrator in reply to Gambit62]

also the micro-site for health professionals produced by the PAS

pernicious-anaemia-society....

[Padders12]

After my GP told me my 2010 results weren't normal I have asked for copies. The problem I am now having us understanding them I will never trust a 'normal' result again!

[Gambit62 Administrator in reply to Padders12]

guidelines changed in 2014 and were greatly improved as a result of input from the PAS - the results may have been normal by the standards used in 2010 but these have now changed.

[Padders12]

I didn't realise I could ask for print outs until I started reading posts on here. This forum is so helpful.

[Padders12]

Any idea how I do that without having to type everything?

[greenbexy in reply to Padders12]

You could take a snapshot on a mobile, with personal info blacked out, then upload on here or onto a computer and then on here. My teenagers help me with the computer stuff!

Also, some people never really find out how they became B12 deficient. Whether it be an absorption problem or PA. I was convinced that I was coeliac or had IBS but after a visit to gastroenterology that was ruled out. I'm now awaiting my appointment with an haematologist. Even though we may never find the reason, the treatment would still be the same.

Unfortunately there is no specific specialist for your doctor to refer you to.

[Padders12 in reply to greenbexy]

I am not too bothered about the cause but am eager to get on with treatment. I am concerned if I go ahead with self treating I may affect any test results. I am going to wait to speak to my GP but if he doesn't agree to continuing loading doses I may just get on with it. Can't face being exhausted anymore. I feel like I have wasted years of my life!

[clivealive Forum Support in reply to Padders12]

I "cheat" with the mouse by dragging the (left held down) cursor over and blocking the text I want to copy, then placing the cursor anywhere in the highlighted text, right click and select "copy".

Go to the document you are producing and placing the cursor in an appropriate place on the page, right click and select "paste"

[Padders12 in reply to clivealive]

Thanks for the idea but was so long I couldn't face typing it all. I have just added photos

[Padders12]

Ok. I guess I would need a new post for that as I can't see where I can add it to this post.

[jillc39]

oh Jo don't worry about length of post.... we have all done that. give your gp and the surgery another chance and try to get your loading doses properly sorted out.

[Padders12 in reply to jillc39]

Good advice. I hope they will sort it out as I don't have the energy for a fight!

[Padders12]

Thanks for the suggestion. I can't seem to find any for Hampshire though.