Vitamin B12 or folate deficiency anaemia & pernicious anaemia

[MissD1503]

Hi everyone i am new to this wonderful group i have been ill for quite some time possibly 5 + years. I went the doctors for an ovarian cancer blood test as i had all the symptoms, then collapsed lost my memory for a while was in hospital 3 nights then i was called back to have Vit B12 & folic acid bloods done which came back very low then had to have my antibodies checked which have come back normal i have to wait another week & a half to discuss the results with the dr even though i am extremely unwell, passing out, chest pains, palpitations, severe pins & needles in hands & feet, bad memory/loss, severe fatigue, my speech is getting worse as words won't come out properly & generally just not on this planet. I am so scared & just wondered who else has this problem & hoped for some advise. Thanks

[emvj]

Dear Miss D,

This sounds really really awful...I'm so sorry for you. Has your doctor begun a loading dose of B12 yet? I would put all your efforts or if you are unwell, ask a parent to call on your behalf - this is acceptable to find out if you are going to have injections. You need to have these as soon as possible. Are you also having folic acid tablets?

Stay in touch.

Em xx

[MissD1503 in reply to emvj]

Thanks Em, I haven't started treatment yet i had my folic acid done as well but not sure the result as i haven't seen my dr yet just the nurse who's been calling me to come back in for more bloods doing, i been in hospital twice in the last 3 months with collapsing & racing heart had a heart monitor on for 24 hrs too but still no definite answers just know that i have very low Vit B & the antibody test was abnormal.

Thank you for your reply means a lot defo keep in touch xx

[emvj in reply to MissD1503]

Hi Miss D,

How are you today?

Em xx

[MissD1503 in reply to emvj]

Hi Em

I still feel strange had a bad few days body feels like its shutting down can't wait to finish work so i can get my pjs on & lay in bed how are you?

Thanks for the message too <3

[emvj in reply to MissD1503]

Hey, that doesn't sound like a Friday feeling at all Just before the office closes, can you call your GP and do these two things? Ask for copies of your blood test results, and to make an appointment with your GP as soon as possible. Then ask a friend to accompany you. Also, if you can, ask a family member or friend to write down your symptons. At the appointment, if there is any question over your blood test results, ask to be referred to a consultant haematologist.

All for one and one for all!

Em xxx

[MissD1503 in reply to emvj]

I have an appointment next Thursday but i am going after work tonight to insist on seeing someone i am going to the loo up 30 times a day to pee i as if i'm not exhausted enough so i need something to stop this asap as well as B12 jab, i really hope they help me soon cos i feel like my body is going to give in i'm strong in mind but even this is tested with the memory & depression slowly sliding in & out.

Defo getting the test results too

Thanks Em xxx

[emvj in reply to MissD1503]

Oh so pleased to hear fighting talk! I my only advice until then is to get hold of some Methylcobalamin (active B12) 5000 mcg patches from amazon. It is water soluble (no overdosing). Dont get tablets. Love Em xx

[MissD1503 in reply to emvj]

Hi

I went to tbe drs and collapsed as i got to the top of the stairs really scary but glad i did it thete so they saw how unwell i have been. I have to wait for nurse to contact me next week to start loading B12 and he's given me antibiotics in case i have water or chest infection as my temp and blood pressure was high. I felt like shouting the symptoms of PA at hom but i was too far gone I'm tsking the antibiotics as i have had a cough for 2 weeks. I feel so ill and rather strange my mind and body feels exhausted glad i have my partner living with me now or I'd be totally on my own as i don't want to worry my family we've had so much bad luck lately that i feel i can't tell them everything yet. Thank you so much you've really help me last few days just knowing you understand means so much.

Have a fab weekend babe xxx

[emvj in reply to MissD1503]

Really glad they took you seriously at last. While you wait to hear from the nurse, get some patches off amazon. Tell your partner to do it for you. You want sublingual 5000mcg methylcobalamin patches to go in your skin. I really felt for you knowing that it was an emergency and very little done to help you. If you feel ill again, just go to A&E. This will expedite matters. Thinking of you. Em xx

[MissD1503 in reply to emvj]

Thanks Em your a treasure. I will look these patches up now. Been awake since silly o clock was vomiting before bed too felt really strange after collapsing feeling less strange this morning though xx

[MissD1503 in reply to emvj]

Are these the right ones?

amazon.co.uk/gp/aw/d/B072LF...

[emvj in reply to MissD1503]

Hi Misty! Yep they are the right ones. Used them on Mum (MS for 40 years) and Dad (brachial neuritis) and bought some for a friend with ME type symptoms. My Mum stopped repeating herself. I'm trying out this one for them. Going to give to my father in law and my husband (vascular dementia and ankylosing spondulitis respectively). I haven't got any of their blood test results. Must get hold of them. Great to hear from you still.

Em xx

[MissD1503 in reply to emvj]

Nice one Em 👍👍 xx

[emvj in reply to MissD1503]

OOPs, yep meant to add this link to the one I'm trying out this time: amazon.co.uk/gp/product/B07...

[SusanLMckinney in reply to MissD1503]

One B12 jab will not do it, and it takes a long long time for total amount of recovery as you have damaged nerves due to lack of Milan sheath to protect them, also the red cells in your blood are not maturing so it takes a little while before breathing is better and strength comes back but you should start seeing improvement in a few weeks. This is if you have PA / subacute combined degeneration. Look it up. There are many more symptoms than what is listed the longer you have it. My B12 level was undetectable by the time my 5th doctor found it. nytimes.com/health/guides/d...

[MissD1503 in reply to SusanLMckinney]

Thank you Susan i will be having more than 1 jab i need to chat properly with the dr preferably when i havent collapsed ☺

Thanks for your comment and advice xx

[Sleepybunny in reply to MissD1503]

Hi,

So sorry to hear what you are going through. I hope you have support from people around you.

PAS members can access details of local PAS support groups, there are several in UK, one in USA and one in Australia. These local support groups can be a useful source of info on helpful doctors etc.

pernicious-anaemia-society....

PAS can support people trying to get a diagnosis

martynhooper.com/2017/07/01...

PAS

pernicious-anaemia-society....

PAS tel no [phone]

"wait for nurse to contact me next week to start loading B12 "

Not sure where you are in world but in UK a patient with b12 deficiency with neuro symptoms should have loading injections every other day for as long as symptoms continue to get better then injections every 2 months.

A lot of UK people on forum struggle to get correct level of treatment if they have neuro symptoms so if you're UK based I'd suggest taking details of UK B12 treatment with you.

If in UK and told you are going to have 6 loading doses then injections every 3 months then this is the standard UK B12 treatment for those without neuro symptoms and may not be enough for someone with neuro symptoms.

If GP (in UK) insists on 6 loading injections then injections every 3 months it might be worth pointing out that the treatment for B12 deficiency with neuro sympotms is detailed in

1) BNF Chapter 9 Section 1.2

Uk GPs will probably have a copy on desk.

2) BSH Cobalamin and Folate Guidelines. I take a copy with me to appts where B12 might be discussed.

" severe pins & needles in hands & feet, bad memory/loss...........my speech is getting worse as words won't come out properly "

These symptoms you mentioned above would usually be considered as neurological.

Some people in UK have had help from b12d.org charity

b12d.org/

[MissD1503 in reply to Sleepybunny]

Hi thank you so much for your advise i will print all this info off and make a list of things i need to say as i keep forgetting symptoms my partner is coming next week to make sure I'm not fobbed off.tganks again for your advise its helping me more than you know

Best wishes Donna

[Sleepybunny in reply to MissD1503]

If you keep forgetting symptoms you could print off PAS Symptoms Checklist and tick all your symptoms.

pernicious-anaemia-society....

I did this plus I added any symptoms not on list.

Think I mentioned this on your other thread but GP may not be aware that it is possible to have Antibody Negative Pernicious Anaemia. This means that a person has PA but there was a negative/normal result on the Intrinsic Factor Antibody test.

Flowchart I gave a link to in post lower down page mentions Antibody Negative PA also when PA and Antibody Negative PA can be diagnosed.

Might be wise to take a list of your typical weekly diet in case GPs assume B12 deficiency is caused by diet.

If you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs then B12 deficiency is more likely to be caused by an absorption problem eg PA

Have you ever had a test for Coelaic disease? Coeliac disease can lead to B12 deficiency because it can affect the gut and lead to absorption problems.

cks.nice.org.uk/coeliac-dis...

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

[Jennylind]

The symptoms sound very scary, but the diagnosis isn't anything to be scared about - it will mean that your symptoms can potentially easily be improved with inexpensive and easy treatment. Your GP should have started you on 'loading doses' (one injection of B12 every other day until your symptoms show no further improvment) immediately. Not all GPs are aware, unfortunately, of the guidelines for treatment, but there are many people on here who have been through the same experience and can advise you.

[MissD1503 in reply to Jennylind]

Thank you Jenny

[clivealive Forum Support]

Hi MissD1503

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

Also ask to have your Folate level checked. 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.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

​

[MissD1503 in reply to clivealive]

Thanks Clive, I haven't started treatment yet i had my folic acid done as well but not sure the result as i haven't seen my dr yet just the nurse who's been calling me to come back in for more bloods doing, i have been in hospital twice in the last 3 months with collapsing & racing heart had a heart monitor on for 24 hrs too but still no definite answers just know that i have very low Vit B & the antibody test was abnormal.

Thank you for your reply & advice means a lot

[BethattheBeach]

MissD1503, we have all found it really useful to ask for copies of our blood tests. I just say it is for my records- you will find it important once you learn how to read them. So, ask for your own copies when you are next with the Dr. I'd recommend Clive's advice to take someone with you - your B12 deficient brain will be finding it difficult to keep up with all the information. Even a friend will be better than you going alone. And for goodness sake, try to get your injections as soon as possible. It will make you feel so much better. Good luck and keep us all posted on your progress.

[MissD1503 in reply to BethattheBeach]

Thank you Beth for your kind words i will defo take someone with me & also ask for a copy of my test results...i can't believe they are making me wait so long (stretched services probs) when i feel so ill...Thursday can't come quick enough.

Thanks again for your advice it means a lot xx

[Sleepybunny]

Hi,

B12 info

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms Lists B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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.

B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

There is also an interesting blog about B12 issues on "B12 Deficiency Info" website.

b12deficiency.info/

PAS (Pernicious Anaemia Society)

If you suspect PA is a possibility, may be worth joining PAS. Costs about £20 a year.

pernicious-anaemia-society....

PAS tel no [phone]

UK b12 documents

BSH Cobalamin and Folate Guidelines

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

I'd recommend reading whole of above document before next appt.

Flowchart from BSH CObalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA or Antibody Negative PA can be diagnosed. Makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test and start initial B12 treatment.

IFA test can help to diagnose PA but IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative/within range (called Antibody Negative PA).

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF British National Formulary Chapter 9 Section 1.2 for detaisl of UK B12 treatment.

All UK Gps will have access to BNF which gives guidance on treatment for various conditions.

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

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

UK B12 treatment is also in BSH Cobalamin and Folate Guidelines , about a quarter through guidelines.

What to do next?

b12deficiency.info/what-to-...

Access to medical records

I get copies of all my blood test results. I learnt to after being told everything was normal and then finding abnormal results on copies.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Unhappy with treatment?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. Quick to respond to enquiries.

hdapatientcaretrust.com/

"was called back to have Vit B12 & folic acid bloods done"

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Have you had a full blood count (FBC) and a ferritin test?

There is a lot more B12 info in pinned posts on this forum.

I am not medically trained just someone who has struggled to get a diagnosis.

[SusanLMckinney]

All of the symptoms you have can and are symptoms of pernicious anemia. There are other things like MS that can do it too, I am hoping it's PA and you can just get on your B12 shots. You have been allowed to have these symptoms way tooooo long. Left too long some damage can be permanent. Good luck to you

[MissD1503 in reply to SusanLMckinney]

I feel like i have Been banging my head against a wall for years just hope they start listening now.

Thanks again for your comments xx