Please Help!!! First time post - Pernicious Anaemi...

Pernicious Anaemia Society

23,257 members16,352 posts

Please Help!!! First time post

Viv_Rose
Viv_Rose

Hi everyone, I would be very grateful for some advice. I am a vegetarian and have had on off issues with b12 deficiency all my life. I am 30 and last December I had b12 level of 123 and was treated with oral supplements. My levels went up to 900 in April. Then I came off supplements as doc said I no longer needed them. Then last few months I started having problems with my memory and my hair started thinning and I had vertical ridges on my nails. Last week I started getting chest pain, breathlessness and dizziness and went to GP. I asked for my b12 levels to be done and they are 260. I’m tolf this is normal and my symptoms are all just stress related. I am really worried and don’t know what to do next. My symptoms feel very similar to when I was 123 but the doctor just says I’m just an anxious person. What would you advise I do? Really don’t know who to turn too and I’ve been getting so upset. please help!!!

28 Replies
oldestnewest

My lowest reading was 265 and you just described me. I had all sorts of tests, brain MRIs, ultra scans, 50 blood tests. Doctors didnt want to admit b12 def, only got them to agree cause i went private!!

Viv_Rose
Viv_Rose in reply to Cazzie91

Really? Are you vegetarian too? What did you say to private doc?

Cazzie91
Cazzie91 in reply to Viv_Rose

No, i thought it was my diet. But i kept track of it for a few weeks and realisef i eat quite alot of chicken, fish cheese etc without even thinking about it. I still dont know the reason of my b12 def, i have an endoscope soon so hopefully that might point out a few problems. O i didnt see a doctor just had private blood tests that highlighted a b12 def.

Viv_Rose
Viv_Rose in reply to Cazzie91

I thought 265 though was in normal range? At least that’s what I am being told?!! So confusing all this lol also sorry you had to go through all that x

Gambit62
Gambit62Administrator

What was the dose of the oral supplements you took that raised your levels in April?

It would also help if you could give the units and ranges that went with your tests - there are at least two ways of measuring serum B12 values.

Also what is your diet like in terms of dairy/egg/fish? - B12 is only found in animal products so if you don't have any in your diet you will become deficient again - though this would generally take years rather than months.

Knowing what the dose of B12 you were taking was would help to clarify if you have an absorption problem.

Its quite difficult to comment on the lowering levels but the drop does seem quite extreme on one level, though on another it could be normal - and your result is back in the normal range. If absorption isn't a problem then the drop could just be that your body has used the excess to replenish stores in your liver or removed the rest of the excess.

Oral B12 is classified as a vitamin supplement - even in high doses (1000mcg+) so there is always the option of sourcing these yourself and using them if they make you feel better though it would be useful to understand for sure if you have an absorption problem.

Viv_Rose
Viv_Rose in reply to Gambit62

I don’t know and my memory is terrible just now. It was three times a day and very high dosage if I can recall as the nurse said I would still probably need injections but I didn’t. I could get the dosages tomorrow and come back to you. Would you be okay with that? I am also going to ask for the actual lab reports as I’m not sure which exact tests they did. My ferritin levels are 36 if that helps???

Viv_Rose
Viv_Rose in reply to Viv_Rose

My diet does include dairy though not in great amounts. Mostly pulses, quorn, soya, vegetables and I do eat cheese most days but don’t eat milk on it’s on or eggs.

Gambit62
Gambit62Administrator in reply to Viv_Rose

yes, come back tomorrow when you have figured out what the dosage was.

as above oral supplements tend to be classed as vitamin supplements so aren't controlled by the prescription only rules - certainly the case in UK and europe and I'm pretty sure its the same in the US.

Viv_Rose
Viv_Rose in reply to Gambit62

Okay posted my most recent results on my original post.

Can’t seen to post my other photos but basically in March my levels were 343 and in December 123. I had to take 100mg every day from December until March. Sorry got numbers totally wrong, does this help at all.

Gambit62
Gambit62Administrator in reply to Viv_Rose

thanks Viv_Rose that's very useful - the difference in numbers isn't significant and I don't think it changes anything above.

Do you mean 100mg or 100mcg - would be very unusual to have a prescription for 100mg oral - usually a dietary deficiency would be treated with 50mcg tablets so 2 of those would be 100mcg.

Very high dose oral is normally in units of somewhere between 1 and 10mg so you would have been taking very large numbers of tablets to get 100mg.

sorry to be pendantic because I know its very easy to misread units but if it really was 100mg then you almost certainly have an absorption problem. If it was 100mcg then its very unlikely you have an absorption problem but that doesn't mean that there isn't something strange going on with your B12 levels, particularly as you are so symptomatic.

It sounds like your GP probably isn't clued up and also that they probably aren't clued up. It is possible that you may have a problem with metabolising B12 when it gets into your cells so need your levels much higher than other people to overcome this. Tests that could clarify would be checking MMA and homocysteine levels, both of which could be elevated if your cells don't have enough B12 to run the processes that convert them back into useful building blocks - though that's only two of the processes that B12 gets used for - they can also be raised by other things so need to be done in a context which would include liver function in the case of MMA ...

However, at the end of the day you should be able to get the tablets without prescription and you could just take those and monitor your symptoms so you get the dose right.

Viv_Rose
Viv_Rose in reply to Gambit62

Mcg sorry! Again Im feeling all over the place just now. I’ve got a private GP appointment on Monday. My pins and needles are getting worse etc so going to ask for injections and also thryoid function tests I think xox

Gambit62
Gambit62Administrator in reply to Viv_Rose

thanks for clarifying.

you can get 50mcg B12 supplements quite easily in health food shops. you seemed to respond quite well to them before from what you have said.

thyroid function sounds like a good thing to check on as well

If the oral supplements relieved your symptoms the last time, why not just buy some oral B12 and see if it helps again?

Viv_Rose
Viv_Rose in reply to Galixie

I thought the strength I would need would have to be prescription and doctor won’t prescribe

clivealive
clivealiveForum Support

You may think I'm daft asking your being a vegetarian but do you know what your Folate level is?

Viv_Rose
Viv_Rose in reply to clivealive

No I don’t but I’m going to GP tomorrow so will ask for all the blood results. My ferritin levels were 36. Does this help?

clivealive
clivealiveForum Support in reply to Viv_Rose

I'm not a medically trained person but know that 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.

Viv_Rose
Viv_Rose in reply to clivealive

Thank you will get all my results tomorrow and will post

clivealive
clivealiveForum Support in reply to Viv_Rose

Goodnight then. Sleep well.

Viv_Rose
Viv_Rose in reply to clivealive

Posted my folate level in original post, would you say it was low. It is the highest it has been but I am taking a supplement already so don’t know if that’s affected results.

clivealive
clivealiveForum Support in reply to Viv_Rose

I'm sorry, I "missed" the result at the bottom of your photograph.

At 9.44ng/ml your Folate level is in the lower 33% of the range but as you say you were already supplementing which will probably have "skewed" the result.

Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember but then I have B12 injections every three weeks for the P.A. I've had for 46 years.

Although I'm not a medically trained person, if you are supplementing with Vitamin B12 I suggest you continue with the folic acid.

I do hope you start to feel better soon.

Hi,

Some links that might be helpful below.

"problems with my memory"

Memory problems would normally be considered as neurological. Do you have other neuro symptoms?

B12 deficiency Symptoms lists

pernicious-anaemia-society.... see Checklist PDF on right of page.

b12deficiency.info/signs-an...

Are you in UK?

My understanding (I'm not a medic) is that in UK, patients with B12 deficiency with neuro symptoms are supposed to have injections whatever the cause of their B12 deficiency.

See following UK B12 documents.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines (treatment info about a quarter through guidelines)

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

Risk Factors for PA and B12 deficiency

A vegetarian diet can be a risk factor for B12 deficiency but there are many other risk factors/causes and it is possible for someone to have more than one cause of B12 deficiency at the same time.

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Link about writing letters to GPs about b12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

I have written more detailed posts recently, may be worth searching for them.

More B12 info in pinned posts on forum. Useful summary of B12 documents in third pinned post.

Neuro Consequences

Some people have pointed out neuro consequences of untreated or under treated B12 deficiency to their doctors. Under treatment can increase the chances of further deterioration including spinal problems.

pernicious-anaemia-society....

More on blood tests

Do you have results for folate, ferritin and full blood count (FBC)?

b12deficiency.info/what-to-...

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

I am not medically trained.

Viv_Rose
Viv_Rose in reply to Sleepybunny

This is really helpful thank you

You need to find out if you have an absorbtion problem(IFA) blood test from your doctor.

Also Folic Acid, Iron and Vitamin D should be in good range as any one of these low could cause similar problems.

The IFA test is not 100% accurate to confirm absorbtion problems, but as oral supplement of B12 helps I doubt you have an absorbtion problem.

The hardest part is diagnosing what the problem is but if oral B12 was helping then you can carry on but it will cause problems as B12 will come high (normal) in blood tests.

I suggest you get all blood tests done before taking B12 again. A B12 level of 260 is quite on the low side and can cause symptoms of low B12.

The same was happening with me so I decided to self inject. (I’m not vegetarian) but had low B12. You also need to know Iron, Folic Acid and Vitamin D levels are normal.

See what your doctor says about the tests and results and take it from there.

If you do get blood tests you can post the results with the ranges for each on here which will be more helpful In getting answers.

I think you do need B12 as it’s on the low side, especially if you’re getting symptoms. (It’s always good to take Folic Acid when you’re taking B12 as they work together). Normal dosage is 400ug tablet daily.

I don’t think you should worry too much but it’s a waiting game to see what a full blood test outcome is.

Hope this helps.

Viv_Rose
Viv_Rose in reply to Ryaan

Thank you I got my figures wrong. I’ve posted a photo of my most recent results. Basically I was 123 in December, up to 343 in March after 100mg of b12 and then it’s gone down to 296.

What is an IFA test and would a GP do this?

In case you are considering self injection, be sure to have your first injection under medical supervision in case of rare adverse reactions.

I would take a detailed list of the symptoms (with examples of how it is affecting your daily life) you are suffering and go with someone who will help convince the Dr this is important.

Ask the Dr to try an experiment where you have a B12 injection once a week for 3 weeks. If it is B12 related the symptoms will abate but if it is not then your symptoms will not change. B12 is water soluable and safe - 50,000 units are given in cases of cyanide poisoning (smoke inhalation).

You would also need to supplement vitamins according to your needs (see lists on this site). An endoscopy and Ryaan's suggestion of IFA test is a good one, because you may find the cause of the low B12 levels.

This may take some time to resolve but with persistence you will get your health back.

Good luck.

Thank you x

Hi again,

"What is an IFA test and would a GP do this?"

IFA test means Intrinsic Factor Antibody test. It is used to help diagnose PA (Pernicious Anaemia). IFA test is not always reliable and it is possible to still have PA even if IFA test result is negative or normal range.

In UK, my understanding is that people who are symptomatic for B12 deficiency should have an IFA test and start initial B12 treatment.

GP would order an IFA test.

As you are a vegetarian, I think there is a chance that GP may assume that B12 deficiency symptoms are due to diet and may not consider other possibilities.

I suggest reading BSH Cobalamin and Folate Guidelines if in UK.

You may also like...