Waiting

[wongy215]

Had blood taken and B12 was 127 .Dr amazed and asked for recheck , Intrinsic factor and parietal cell antibodies write negative but B12 dropped to 86.still no treatment as he wanted to check again .meanwhile I can hardly keep awake and have just nearly wet the bed , is my Dr out of order making me wait for yet more results because he doesn't know what's causing the sudden drop?

[deniseinmilden]

In my opinion, yes: you should have been treated urgently when you had symptoms, especially when it was likely to be low B12 and to not do so is being negligent.

I don't want to scare you but it is a fact that if you are not adequately treated you can get long term and permanent damage.

I hope you get at least every other day injections until your neurological symptoms resolve and then jabs at least every 8weeks, in accordance with BCSH guidelines. You may need the every other day injections for a long time and they may have to be resumed if your symptoms return.

Please be aware that while you are on frequent jabs you will need other things to keep everything working: a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron.

Good luck with getting the treatment you need!

[ndodge]

Yes! You should be started on B12 injections right away. I understand that the GP would like to find the cause, but that is not as important as getting your B12 levels up right away!

If you are in the UK, every other day until symptoms go away. If you have neurological symptoms, the injections should not be stopped until those symptoms resolve. Might take awhile. Those are very low numbers!

Best of luck and please insist on treatment!

[BethattheBeach]

YES!! Copy the NICE guidelines (even if you are not in the UK) and take it along with a long list of your symptoms, esp neurological ones. Take someone with you to help advocate for you because two brains are harder to bully, especially if one brain is not B12 deficient. This is reasonably urgent so you should make another appointment today. Good luck. You will soon be on the road to recovery.

[Foggyme Administrator]

Hi Wongy215. I agree with Deniseinmilden. Your GP is wrong. You should be treated immediately with B12 injections, as per the regime Deniseinmilden outlines (i.e. Injections every other day until no further improvements, then injections every other day). Not many GP's are aware of this regime and will simply give you six loading doses (every other day) and then revert to one injection every three months. This is not suitable for people with neurological symptoms, results in under treatment, and leaves e potential for permanent neurological damage.

The information about dosage where neurological symptoms are present is contained in the British National Formulary (BNF), the doctors' prescribing bible. Your GP will have a copy on his desk. If he is reluctant to prescribe the more intensive neurological regime, ask him to read down to the second item - this contains the prescribing information. Many GP's do not read that far and miss it!

It's really important to start B12 injections very quickly, especially in light of your symptoms, the fact that your B12 is so very low, and appears to be dropping rapidly.

Thee are a number of pinned posts to the right on the home page that give more information about B12 deficiency. The document by Frank Hollis (the last one on the second pinned post) summarises the current guidelines about treatment and it would be something that could be printed quickly to take and show your GP - also the BSCH (British Committee for Standards in Haematology) document, a flow chart outlining testing and treatment protocols that all GP's should follow.

If your surgery is one of those where you have to wait several days or weeks for an appointment, please ask for an emergency same day appointment.

I really hope that your GP moves very quickly on this but please be aware that many GP's are remarkably uninformed about B12 deficiency and you may have to use your powers of persuasion (and show evidence from the pinned posts) to get any action.

Finally, your GP is being negligent in his delay or potential refusal to treat you (saying this just to give you some extra determination - which you may need as with a B12 level like that, you probably feel very ill indeed).

B12 deficiency is a fiendishly complicated 'thing' so please post any problems or question here - lots of very knowledgable people will be here to help you, if and when needed.

Very good luck and please let us know how it goes.

P.s. I forgot to say, just because your IF and PCA tests were negative, it does not mean that you do not have PA. These tests are notoriously unreliable (only about 50% accurate). And you could have something called antibody negative pernicious anaemia (as per the BSCH treatment flowchart, discussed above).

[Marymary7 in reply to Foggyme]

They don't want to know if you already have M.S. It's even worse treatment by the NHS. Good luck, hope foggy's advice gets you somewhere.

[lesley17]

You need to be treated and if your G.P is reluctant to treat you, then go to an emergency department with your results and see someone there. Good luck!

[Sleepybunny]

Hi,

page 29 in the "BCSH Cobalamin and Folate guidelines" shows the recommended process for Uk medics to follow if they suspect someone has B12 deficiency.

I gave a copy of this document to my GPs. page 8 in same document gives details of recommended UK b12 treatment for those with, and those without neuro symptoms.

As said above, untreated or inadequately treated B12 deficiency can lead to permanent neuro damage. See point 5 in link below.

bmj.com/content/349/bmj.g5226

I gave a copy of this book to my GP which is up to date with UK B12 guidelines

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

Another book I found useful, think author is in USA, is "Could It Be b12" by Sally pacholok and JJ. Stuart

pernicious-anaemia-society....

b12deficiency.info/

[Sleepybunny in reply to Sleepybunny]

If you have time take a look at the pinned posts on this forum. I found it useful to read the summary by fbirder in the second pinned post.

[Gambit62 Administrator]

Your doctor is extremely out of order and actually putting your health at risk by refusing to treat at that level. B12 deficiency is a serious condition - and the effect on the nervous system is devastating/life threatening in end stage. If he is delaying because of anaemia then he should be aware that anaemia isn't always amongst the first symptoms ... and if he is delaying because it doesn't appear to be PA - the tests aren't that accurate and fail to pick up antibodies about 50% of the time ... and there are plenty of other potential causes for absorption that aren't PA - eg gastric surgery affecting the ileum, a whole raft of drug interactions .... and low stomach acidity.

[Hidden]

What on earth is the matter with G.Ps in Britain? Symptoms + blood results = condition. Treat it. Find cause if possible. What is do difficult for them?

I've lived in France and Cyprus and in both countries you'd be sent to hospital specialist after first blood test.

Makes me really angry that so many people are being left untreated for something which is easily treated, is well researched and documented.

Thank goodness for Internet forums that give us the information to fight our corner.

[Foggyme Administrator in reply to Hidden]

Well said 06hollyberry 👍

[Hidden]

My goodness gracious me. You must be feeling awful. Please take the advice from the people who have posted, they are very knowledgeable, Don't forget your evidence. Take a non B12 ddficient person with you as advocate, to give you support & strength.

Surely his lack of intervention, is not due to funding. It must be lack of knowledge. Gambling with your health, is not fair.

[wongy215]

Thanks everyone glad it's not just me being dramatic. I'm a nurse working 12 hr shifts so feeling exhausted and weepy.got appt on Monday so will be sure to insist on treatment this time

[MariLiz]

I find it hard to believe your doctor is prepared to leave you untreated whilst your levels are so low and still falling. Urgent treatment is required. As others have already said, permanent damage can occur. I'm astounded you are managing to stand up, let alone work a full shift as a nurse. Do see your doctor as soon as possible and insist he follow the guidelines. Very best wishes MariLiz

[Sleepybunny]

If unhappy with treatment after appt, these links may be useful

b12deficiency.info/b12-writ... link about writing to GPs

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

citizensadvice.org.uk/healt...

"I'm a nurse working 12 hr shifts"

Do you have any exposure to nitrous oxide in your work? See links for more info.

b12deficiency.info/what-are...

gov.uk/drug-safety-update/n...

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

[wongy215 in reply to Sleepybunny]

No can't blame nitrous oxide.😣

[illnesswhatillness]

He knows perfectly well whats causing most low b12 levels . Maybe he had no b12 shots left and was playing for time . You could go and buy some methylcobalamin active b12 supplements ( this is not available on the NHS ) which will work much better than the inactive form used by GP`s ( hydroxycobalamin ) . Get him to start the treatment as soon as possible and tell him you are not happy being left like that .

[fbirder in reply to illnesswhatillness]

Methylcobalamin is not available on the NHS because Hydroxocobalamin is more stable and tends to be cheaper. The vast majority of the population can easily convert hydroxocobalamin to the active forms (yes, there's more than one).

[illnesswhatillness in reply to fbirder]

The " vast majority " of the population have b12 deficiency related illnesses including MS , cancer , autism , depression , dementia etc . The "vast majority " of doctors are unable to identify , diagnose and treat the symptoms of b12 deficiency caused by the generational use of nitrous oxide gas and b12 lowering pharma drugs . B12 maintains RNA and DNA , so if you switch off b12 synthesis with nitrous oxide gas over several generations and dish out b12 lowering pharma drugs , such as proton pump inhibitors , anti biotcs , metformin , mefenamic acid , pain killers , anti depressants , antacids and a host of others for each individual symptom instead of treating the cause , what you do is cause inborn errors of metabolism and in effect you genetically alter people .............which is a not only a war crime but is a crime against humanity and the medical world should have learned from the last holocaust ..............they obviously did not !!! You say that the NHS use hydroxycobalamin which is an inactive form of b12 and will not work on many people due to absorption problems , inborn errors of metabolism ( MTHFR ) or because they do not have enough intrinsic factor in their stomach . According to Dr Joseph Chandy and other respected and learned doctors who are in his league , up to 40% of the population have b12 deficiency problems . Methylcobalamin was reserved for the private sector in the Nazi inspired "child protection " report . Many doctors then left the NHS or took early retirement , many of whom up private practice in order to take advantage of the methylcobalamin monopoly and cash cow which was created and are now able to charge upwards of £100 per injection for methylcobalamin which should only cost around 70 pence per dose . That the NHS use hydroxycobalamin because it`s " more stable " or " cheaper " is nonsense .

[fbirder in reply to illnesswhatillness]

Please stop posting irrational incorrect rubbish like this.

This forum is for the dissemination of information and experiences useful to people with PA and related problems with a B12 deficiency. Posting patently nonsensical garbage (I.e., nitrous oxide 'switches off B12 synthesis') is misleading garbage.

Your illogical nonsense about methylcobalamin and your consiparcy theories as to how the medical establishment restrict its use to the private sector are neither informative nor helpful.

I would suggest that people ignore your inane ranting.

[illnesswhatillness]

healthline.com/health/megal...

[Daisy77 in reply to illnesswhatillness]

How old is this link? Schilling tests have not been done for years.

[PAS-admin Partner in reply to Daisy77]

It's from last year but it's a useless link, by a dr who clearly just copied some stuff from the internet and has no clue. It also states: 'Adding more foods with vitamin B-12 to your diet can help' yeah, that would help us loads .... and: 'It’s also possible to develop pernicious anemia because there isn’t enough vitamin B-12 in your diet.' No it isn't, a B12def yes, PA not of course. So just ignore this link, no clue.

[wongy215]

Hi everyone. Been back today.last weeks results were 142 which dr says it's normal.I ? this and he said 100 is normal as it depends which scale you're using. He is now saying there is a dodgy reading somewhere and I've got to go for another set of bloods tomorrow. Can it vary this much 126 /86 / 142 all within a month or is he right?

[humanbean in reply to wongy215]

&*!x%$ - I really want to swear loud and long. What is wrong with your doctor? You are B12 deficient and need treatment urgently!

What is he hoping for tomorrow? A reading of 800?

[wongy215 in reply to humanbean]

What are the 2 scales he's on about .says 100 is normal on one

[humanbean in reply to wongy215]

Sorry, I don't know. You might get more replies if you post a fresh thread with your update. People often ignore updates to old threads.

[Foggyme Administrator in reply to wongy215]

I agree with HUMANBEAN wongy215. If you put up a new post, you will get more responses.

And you doctor is wrong. You are B12 deficient, on any scale!

Scales - different machines use different reference ranges so it not possible to compare like with like.

100 is not 'normal' in any reference range. It will be at the bottom of the reference range and GP's often make the mistake of not realising that bumping along at the bottom of a reference range is not sufficient for most people.

You need treatment for B12 Deficieny .