B12 & Iron Deficency

[mand82]

A few weeks ago I went to my gp surgery & saw the nurse as I was feeling more out of breath, really bad headache, loss of appetite & heavy/dull pain in my legs when I try walk & last time I felt like that I had acidosis last year so that's why I thought I get checked out, the nurse got me to have a blood test at the hospital which came back the next day & was told I had b12 & iron deficiency & had to have a months worth of iron tablets & I was given 5 loading doses of b12 injections which has made me soo tired then I've ever been the nurse told me that I have to get my blood test again in 3 months and that's it, I feel worse then I did before i went and even seen the nurse etc, my blood results say my b12 is 117 ,

[clivealive Forum Support]

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to your system,

Although your Folate is flagged as "normal" it is at the bottom of the range and vitamin B9 is essential to process the B12 you have had injected and it gets "used up" in doing so.

I'm not a medically trained person but I suggest you ask your doctor about prescribing some folic acid to raise the level.

Do you have any idea why your B12 fell so low?

[mand82 in reply to clivealive]

I have no idea , I've been a vegetarian since 1997 then went vegan in 2008 but always made sure that i ate food & drink that had all the vitamins in etc & never had any problems up till now, since about 2003 I started getting tired all the time , used to be able to stay out late/awake for hours/days traveling seeing bands when I was younger till I hit 21-ish now I'm too tired to stay up late to watch the hockey at times as I just fall sleep in the middle of it I've always had a very pale skin as well since I was younger sometimes it gets a bit colour to it but very rarely, the nurse commented on it after the 3rd loading dose of b12 saying they injections seem to be working as I've got some colour back to my face

[clivealive Forum Support in reply to mand82]

Being vegan goes a long way toward explaining your B12 deficiency as the only natural way to source it is by eating meats, fish, seafoods, eggs, poultry and dairy produce.

Hopefully the (now life long) injections of B12 will help restore your quality of life and you'll be able to see the whole hockey match through to the end.

Please do ask your doctor about supplementing with folic acid.

I wish you well.

[mand82 in reply to clivealive]

Will pop into my gp surgery on Tuesday & ask them to put in the request to my gp for the folic acid , at this moment I'm not sure if I'm going to get more injections or not it's been over a week since I had the loading doses & was told I gotta wait 3 months for a blood test to see how it's gone , the nurse gave me the blood test form & dated it for 1st June so just gotta wait it out I guess till then

[clivealive Forum Support in reply to mand82]

I think that your being vegan will mean that you will need B12 injections for the rest of your life.

I'm assuming your doctor knows about your vegan diet?

As Gambit62 suggests make a list of all your symptoms and if there is no improvement go back to your doctor with it

[mand82 in reply to clivealive]

Yeah the nurse knows I'm a vegan & she told me to make sure I eat enough vegan food that has all the iron & vit abc etc & to look up online for what food has what vitamins to help , I always make sure I buy vegan food that has fortified vitamins in it & soya milk, I take vitamin D tablets for over a year now as well as my gp told me back then I had vitamin D deficiency so take those everyday

[clivealive Forum Support in reply to mand82]

Well done mand82 but I still think you will probably need B12 injections for life and unless the test they do in June comes out low it may be pretty meaningless.

However I wish you all the best. Come back here when you get the results and let us know about your ongoing treatment

[mand82 in reply to clivealive]

Will do

[Gambit62 Administrator]

your B12 level was very low

your folate levels weren't' great so there is a chance that these may now be deficient - an ordinary folic acid supplement should be sufficient if you have looked at your diet and it isn't

Unfortunately recovering from a B12 deficiency and an iron based anaemia aren't things that happen overnight - and as clivealive says sometimes things feel worse before they feel better. The sleeping may just be because your body needs time to repair.

Did you make a full list of all the symptoms you had and have you been monitoring for any changes?

pernicious-anaemia-society....

[mand82 in reply to Gambit62]

ive looked at that link most of the symptoms are the same symptoms to other conditions I have, asthma, chronic migraines, insomnia, I'm also dyslexic I lose concentration forget things/names/faces ,

[Gambit62 Administrator in reply to mand82]

would suggest that whether or not the symptom relates to another diganosis you still not it and monitor any changes.

[mand82 in reply to Gambit62]

Ok, I've only been feeling more tired since the injections , could just close my eyes & fall asleep had over 10hours sleep

[Sleepybunny]

Hi,

If you're in UK, I'd suggest reading the whole "BSH Cobalamin and Folate Guidelines".

It's a UK b12 document, that came out in 2014, that gives guidance to UK doctors on the diagnosis and treatment of B12 deficiency. My experience has been that some doctors do not have a full understanding of B12 deficiency and some are unaware of below document.

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

Link to flowchart in BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

What sort of symptoms do you have? In UK, b12 deficient patients with neuro symptoms are supposed to get more intensive treatment.

B12 deficiency Symptoms lists

b12deficiency.info/signs-an...

pernicious-anaemia-society.... click on checklist

b12d.org/admin/healthcheck/...

Uk B12 treatment info

1) about a quarter through BSH Cobalamin and Folate Guidelines

2) BNF (British National Formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

If you are in UK, I'm puzzled as to why you have only had 5 loading injection as the BNF link above mentions 6 loading doses over a fortnight not 5 .If a patient has neurological symptoms (eg tingling, pins and needles, balance issues, memory problems, tinnitus etc) my understanding is that it should be a loading injection every other day for as long as symptoms continue to get better. Some causes of B12 deficiency require maintenance injections as well as loading injections.

Causes of b12 deficiency

b12deficiency.info/what-are...

What does GP think is causing your B12 deficiency?

Has GP has assumed your B12 deficiency is due to vegan/vegetarian diet? It is possible for someone to have more than one cause of B12 deficiency. My understanding of flowchart mentioned above is that PA (Pernicious Anaemia ) as a possible diagnosis should be ruled out.

[Sleepybunny in reply to Sleepybunny]

IFA (Intrinsic Factor Antibody) test

IFA test can help to diagnose PA but is not always reliable. It's possible to have PA with a negative result in IFA test (Antibody Negative PA).

Family Medical History

Is there a family history of PA/ auto-immune conditions/ B12 deficiency?

pernicious-anaemia-society....

B12 books

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

"Could it Be B12" by Sally Pacholok and JJ. Stuart

Other B12 info

1) BMJ B12 article

bmj.com/content/349/bmj.g5226

2) lots of B12 info in pinned posts on this forum.

I am not a medic just a perosn who has struggled to get a diagnosis.

Acidosis

Sorry don't have experience of this.

[mand82 in reply to Sleepybunny]

Yes I'm in the uk, I will take a look at those links , never saw my gp it was the nurse that diagnosed me & treated me she didn't really say why I got the b12 & iron deficiency just told me to eat more food with b12 & iron & to look it up online to find which foods have them in , symptoms I have is tiredness, lack of energy, rotten headache, aching all over, but I do suffer from chronic migraines for like 19 years & tinnitus

[Sleepybunny in reply to mand82]

I'd also suggest seeing GP and see what Gp thinks is causing low B12 and low ferritin.

May be worth asking if PA as a possible cause has been excluded.

Ferritin below range

B12 below range

Folate at bottom end of range

Low iron can lead to smaller red blood cellls. low B12 or low folate can lead to enlarged red blood cells. In a person with both low iron and low b12, the MCV in the full blood count tests may appear to be normal due to effects of low iron masking effects of low B12.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Has Gp suggested any further iron tests? or a blood smear/film

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

[mand82 in reply to Sleepybunny]

The surgery I'm at will shove you to the nurse when it's things like this and other minor stuff as they are apparently trained in it and want to keep the gp's free for more serious/bigger problems that nurses can't deal with , the worse surgery in town,

[Sleepybunny in reply to mand82]

I'd have thought that having a vitamin deficiency which if not treated correctly could lead to permanent neurological damage including SACDSC (sub acute combined degeneration of the spianl cord) would count as "serious/bigger problems".

In my opinion a B12 deficiency is not minor. If untreated it can lead to permanent damage.

Sigh of exasperation at attitude of some surgeries.

"chronic migraines for like 19 years & tinnitus"

Migraines and tinnitus are usually considered to be neurological symptoms.

In UK, a patient with B12 deficiency with neurological symptoms should have loading injections every other day for as long as their symptoms improve then a maintenance injection every 2 months.

Unhappy with treatment?

Link about writing letters to GP about b12 deficiency.

b12deficiency.info/b12-writ...

b12deficiency.info/what-to-...

PAS

Some people on forum join the PAS.

pernicious-anaemia-society....

PAS tel no [phone]

They are helpful and sympathetic and a good source of information.

[mand82 in reply to Sleepybunny]

I'm not even sure if my migraines are a symptom of b12 or just unconnected, my migraines started when I became a vegetarian but the gp didn't diagnosis or do anything about my migraines I had to go private about them & get them to make my gp prescribe me medication for my migraines as they get really bad without the med, my surgery is the worse for any treatment but been told if I wanted to make a complaint the surgery could kick me off their list & id be without a gp surgery as strict catchment rules means I can only go to a surgery in my area & my surgery is the only one

[Sleepybunny in reply to mand82]

Some medicines can effect B12 levels.

see drug induced causes in link below.

b12deficiency.info/what-are...

If removed from patients list

nhs.uk/chq/Pages/2556.aspx?...

If you are in England, since 2015, GP practices allowed to accept patients from outside their area.

nhs.uk/NHSEngland/AboutNHSs...

[mand82 in reply to Sleepybunny]

None of the surgerys in my hometown will take anyone outside their boundaries just double checked with them

[Sleepybunny in reply to mand82]

Think if a patient gets removed from Gps list in England, the next step would be to contact NHS England area team to ask for help in being assigned to a new GP.

england.nhs.uk/about/region...

If there is only one surgery in a particular area, I think it's likely that a patient would be reassigned to the same GP surgery that removed them.

[Maga1]

Hi thanks for post can you explain acidosis if I think its what I have then it all makes sense thanks

[mand82 in reply to Maga1]

When your body fluids contain too much acid, this is known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. For instance, your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid in your body.

[mand82]

Will see what happens on my next blood test , & probably get b12 injections or tablets from the gp ,

[mand82]

I live in Essex

[mand82]

So true, I got the worse surgery in town as well

[JMN2017]

I can't see how you can be 'blocked' from getting an appt with your GP, having to see a nurse instead. Can you just make an appt, not giving your reasons to the receptionist? After all, it shouldn't be the role of the receptionist to decide who you will see unless you've asked for an opinion!

Once in with the GP, you can hopefully state your concerns etc.

[mand82 in reply to JMN2017]

The receptionists at my surgery think they know better & think they are higher up then the doctors & nurses I've had arguments with them on the phone as their useless even the doctors are useless giving me the wrong medication, wrong dosage etc

[Ryaan]

My theory is although it is standard procedure that having loading doses (1 every other day, 6 over 2 weeks) is introducing too much B12 too sudden.

The first time I had loading doses like that made me feel terrible (after loading doses was 1 injection every 3 months).

The second time round (following year blood test) as I stopped having my last 3 monthly jab my levels dropped again but this time my gp decided to give me 1 injection per week for 6 weeks and after 6 weeks asked how I felt and continued with 1 per week. This time round I felt so much difference after 8-9 injections (total 8-9wks).

I was also low on folate and was given 400ug 1 per day. This worked out so much better, I didn't didnt feel the terrible lows of loading doses like last time. My gp said it was too much too often last time (6 in 2 weeks), rather he said a slower introduction at 1 injection per week will gradually build up the levels without the negative effects.

No go is an expert when it comes to B12 but he said it worked well with other patients. I think he was right and no matter how low your B12 is 1 injection per week can only increase your levels but at a slightly slower rate.

I suspect that is the case with you, but now that you've had your loading doses and you'll have to wait 3 months you will start to feel better as you're not having any more injections any sooner.

Your next blood test will only show that your B12 is now much higher or in normal top end range which is meaningless since you've had the loading doses. Also will show normal folate and iron due to supplementing. With B12 and the supplements what you need is constant maintenance to maintain top end levels over a period of time depending on how bad your symptoms are, so loading doses and 1 injection every 3 months with blood test showing your levels are within good range doesn't mean everything is now fine. 1 in 3 months is far too less for most people. Once a month after loading doses is far better and some people if not most start to feel some kind of return of symptoms towards the end of the month before the next jab.

I'm no expert but in your case it's now about trial and error, but it's good news you're on the journey towards the right path and things will improve. See how you feel before your next 3 monthly injection. In the meantime take the supplements your gp has given, they will do you good. I think you won't feel worse by the time you're due for your next injection and see how you feel after a few days following you're next 3 monthly injection.

Also don't know what type of B12 you're using as here in uk it's hydroxocobalamin which I think is the best type.

Don't worry you'll find out what's going on after you're next injection.

B12 is not a quick fix but it definitely works, takes a bit of time. In the meantime have some good rest as you're body's recovering.

I found out that I need an injection every 2 to 4 weeks so have taken the self injecting route. If worst comes to worst and gp doesn't give you more than 1 every 3 months you can easily buy B12 online which is not expensive at all, fairly cheap to buy, just need to learn how to inject which is also not difficult as you can learn from YouTube.(injecting in thigh is simple and easy.

Wish you well.

(Long read) but hope it helps.

[mand82 in reply to Ryaan]

I'm in the uk too, so far my nurse hasn't mentioned about any further injections etc just a blood test on 1st June, not sure what the b12 injections were called they were small little bottles of red liquid that the nurse put the needle in to suck it into before shoving into my arm & telling me it will hurt a bit as it's a little bit thicker then other injections , I just have to wait till June to see if I'm getting more injections or not after the blood test

[mand82]

Just got my main prescription today & my gp actually gave me the folic acid tablets I requested so will see how that goes