Bloods are normal

[Medium73]

Hi im confused by my bloods as i havent had my b12 jab in nearly two years due to covid for the first year but due to my agrophobia haven't been but my b12 level and folate came back normal even thow iv had my bowel iut as a child so have always had them but now they wont perscribe them as my mental health is blamed for symtoms of fatigue and confusion

[wedgewood]

Have you actually seen your blood results? Your surgery is obliged to give you a print out of them if you so wish . I didn’t know this until I found out on this forum . I found out later that when I went to the doctors with Pernicious Anaemia/ B12 deficiency symptoms ( the usual exhaustion, confusion, anxiety ,and vertigo ) . Also numb feet as the deficiency was advanced . I was told that the blood test was normal . But actually, the B12 was well below range . I was sent on my way . I eventually found out through a private doctor that I had P.A. Sorry to go on so , but you can imagine that this has affected my attitude . You need your B12 injections because of the operation you had . It was involved in the absorption of B12 . Covid should NOT have prevented you having your B12 injections . The chairman of our Society , Martyn Hooper , intervened with the” powers that be “ when B12 tablets were deemed a suitable substitute , and injections were re-established .

I am honestly OUTRAGED on your behalf that your injections were discontinued . It should never have happened . It’s disgraceful .. B12 injections are really cheap , and take 7 minutes of a nurses time to give. ( and nurses are not paid a Kings Ransom. )

What can I suggest ? Firstly you can write a letter of complaint to your doctor , also to the practice manager , asking for reinstatement of your injections. This letter will have to be stored with your records You should also know that it is possible to have a normal reading of B12 when you are actually deficient - Up to 80 % of the amount in your blood can be inactive B12 , which is of no use to you . Yes, doctors are very ignorant on the subject of B12 deficiency, and seem unwilling to learn.

If that has no results , and I know how difficult it is to fight your corner when you feel unwell , you could try a very high dose of B12 tablet ( you are supposed to be able to absorb 1% of B12 through the ileum )

But I know that it doesn’t work for many patients . There are also sub lingual tablets and B12 sprays for the nose . . I tried all those plus patches , with no success at all . After a huge battle and a positive private Intrinsic Factor Antibody test ,( proving P.A. : I got a 3 monthly B12 injection . This took months , insufficient injections, so now I self inject once a week to keep myself well . It would be ideal for you to self-inject , given your agoraphobia. You could then inject as often as you need to keep your symptoms at bay. Your mental and physical health would improve .

It’s dreadful what is happening to B12 deficient patients, through the ignorance and intransigence of the medical profession on this subject . You have my every sympathy, Medium75. I am really moved by your situation . You have come to the right place . I will send you information . Self injection is cheap ( about £1,60 for everything — ampoule of B12 , needles and syringe) B12 ampoules can be obtained from German online pharmacies . In Germany no prescription is required for B12 ampoules , unlike here in U.K.

Very best wishes .

[Jillymo in reply to wedgewood]

Brilliant reply. I agree it is a *loody disgrace and so many of us are suffering through ignorance. They have no qualms when it comes to pushing the antidepressants out. !

This poor ladys story has really angered me especially as she has had surgery. What the hell is going on with our so called medics ?

[wedgewood in reply to Jillymo]

Why do they push antidepressants, but make getting B12 injections impossible or at best, very difficult ? And we know how cheap they are . … Draw your own conclusions . …….I’ve drawn mine ………. If the treatment for B12 deficiency, for whatever reason , were a drug manufactured by “Big Pharma “, my firm belief is that we would have no problems in getting treatment.

[Jillymo in reply to wedgewood]

100% correct.

I said this to my Gp - she got right on her high 🐴

It is not only cruel it is unjustified.

[wedgewood in reply to Jillymo]

You are a brave woman Jillymo ! You deserve a 🏅

[Narwhal10 in reply to Jillymo]

I hope she knows how to land and roll because from that height it’s going to hurt !! 😉

[ACritical in reply to wedgewood]

Vitamine B (12) injecties actually heal your body although you need to continue with them. Pharma is not making money of that . Antidepressants are like ibuprofen/ paracetamol they don’t heal… they just manage pain( psychological pain incase of depression). So Pharma knows how to get a regular income from all sorts of medication. Doctors are encouraged to prescribe these as we all know . I was on such strong migraine medications and only got worse ending up in hospital. Now only Hydroxocobalamin and the occasional ibuprofen/ paracetamol when I have ignored my triggers . My migraine is both as result of life long under treatment of vitamin deficiency and hypersensitivity for certain food. I had a very good neurologist trained in Sweden.

[wedgewood in reply to ACritical]

Yes ACritical , you are right . So glad to hear that you have improved your health with B12 . Great to hear positive news . All the best to you .

[Gambit62 Administrator]

The studies on which the 2-3 months for jabs are probably based showed a huge variation in how long b12 levels were retained - and in some it was years. Unfortunately these studies don't actually say how the patients felt during this time - just looked at the blood results.Unfortunately GPs just aren't aware of this and don't really understand the significance and why this makes using serum B12 results post a jab at best difficult.

[wedgewood in reply to Gambit62]

Yes ! agreed . But Medium 73 has had her injections stopped all through Covid ,which never should have happened , and now not reinstated even though her B12 deficiency was caused by an operation .. There is never a reason to test B12 because of having had that operation . It’s outrageous , and cruel .

[Tanyanarialucia1965]

Furious for you, it is a known fact that those of us with serious gut problems can have normal amounts in the blood but it needs a healthy working stomach/ bowel to convert it, I self inject as have a great doctor who fully understands this but the good news is you now can go to beauty salons to get b12 injections , rest assured that any mental health problems or neuropathy will be because you need your bloody injections!😡😡😡

[Cherylclaire Forum Support]

Please also have a look at the link in Sleepybunny 's latest post .

[49goingon99]

I had my B12 injections stopped. According to my docs, " I had a few and that would have sorted it " 😶 it is frustrating that gp's can't look at how ill we are rather than just look at blood test results.

[Sleepybunny in reply to 49goingon99]

Have your injections been restarted 49goingon99?

[49goingon99 in reply to Sleepybunny]

No sweetie, I started SI ...

[Sleepybunny in reply to 49goingon99]

Might be some useful info to get NHS to restart them in my other replies on this thread.

You could search forum posts for "injections stopped" as lots of people have had similar experiences.

[49goingon99 in reply to Sleepybunny]

Thank you I will have a look. My gp's are hopeless on another level. They just pass the buck to my sarcoidosis team most of the time as they had it so wrong at the beginning. Appointments have been a long time inbetween. I am so fatigued ATM, my batteries don't seem to be charging and it is very frustrating as I haven't got the kick arse attitude I need to get things done.

[Sleepybunny in reply to 49goingon99]

If you have the time and energy, might be worth starting your own thread on the forum as this way you'll get more responses.

[Sleepybunny]

Hi,

I am so sorry to read that you haven't had your injections for so long.

Surely if your agoraphobia is preventing you from getting to the surgery, your GP should be able to arrange for a district nurse to visit you. Maybe your GP surgery can arrange for you to be taught how to self inject.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

There is a PAS leaflet "Treatment is for Life" on PAS website and other useful leaflets

pernicious-anaemia-society....

PAS website has a page for health professionals that your GP may find helpful

pernicious-anaemia-society....

The person who runs B12 Deficiency Info has helped some people on the forum.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

Local MP or devolved representative may be worth talking to.

Blog post about help if B12 injections stopped

b12deficiency.info/are-your...

More B12 info.....some links may have details that could be upsetting.

UK B12 documents

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from article above)

pernicious-anaemia-society....

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info).

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

"iv had my bowel iut as a child"

Do you mean you had a colectomy (colon removed)?

If you have the time and energy, I suggest you try to track down the national and local guidelines for people who've had the same operation to see if there is any mention of the need for regular B12 injections.

Other charities/organisations dealing with gut health that might be worth contacting

iasupport.org/about/about-ia/

colostomyuk.org/information/

crohnsandcolitis.org.uk/abo...

gutscharity.org.uk/

Another thing you could do is to access your medical notes and see if there's any mention of the need for B12 injections.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis/treatment etc keep a copy in a safe place.

"i havent had my b12 jab in nearly two years due to covid"

Have a look at this PAS news item from 2020 about updated advice from BSH (British society of Haematology) on treating B12 deficiency during pandemic. There were over 100 comments left under the article.

pernicious-anaemia-society....

PAS news item on contacting NHS England about treatment problems during pandemic

pernicious-anaemia-society....

[Sleepybunny]

Hi again,

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...