loading shots

[steveb12]

I just started my 6 shots. I have had 4 and the 5th in the morning.

Feeling hot in the body sometimes and very tired at times then

fine. I have a lot of hope that at last i have found the reason

for my energy slumps and dull foggy head.

[Gambit62 Administrator]

Steveb12, it can be helpful to make a list of your symptoms and monitor how they change over time - particularly after loading shots as many people run out of B12 long before their maintenance shot is due.

pernicious-anaemia-society....

B12 is used by a lot of process in the body so it's effects are many and various and sometimes it can feel as if things get worse before they get better.

Do you know if you had anaemia as a result of the B12 deficiency.

[steveb12 in reply to Gambit62]

That was my diagnosis. Pernicios Aneamia. My prescription is 6 loading shots over two weeks and then one shot every 3 months.

[Gambit62 Administrator in reply to steveb12]

if you have neurological symptoms then loading would be - per BCSH guidelines - 3x weekly until symptoms stop improving (review after 3 weeks) followed by maintenance shots ever 2 months.

Suggest that you get hold of a copy of your last set of bloods - including full blood count and any other vitamins and minerals that were done at the time - full blood count would show if you had macrocytic anaemia ... and if your folate was on the low side you might want to consider supplementing - 200-400mcg should be adequate - but please do check with pharmacist before supplementing just in case there are interactions with any other medication you are taking (though not aware of many that apply to folic acid).

[steveb12 in reply to Gambit62]

I have a numbness in my left arm. Could this be connected to B12 deficiency? I have not mentioned this to my doctor.

[Gambit62 Administrator in reply to steveb12]

it could be - worth mentioning though quite likely your GP won't be aware that there is a different regime for neurological involvement.

Please go through the checklist and check what symptoms you have that are/could be B12 related.

Do you have any other conditions

[steveb12 in reply to Gambit62]

Where di i find the check list?

[Gambit62 Administrator in reply to steveb12]

in my original response but here it is again

pernicious-anaemia-society....

it's a few inches down the page

[steveb12 in reply to steveb12]

yes i have many of those symptoms listed. I will make an appointment to see my doctor and report these symptoms to him.

[steveb12 in reply to Gambit62]

Hi Gambit,

Can you give me the link to the page which shows this protocol. I have looked on the BSH (BSCH)web

site but was unable to find it.

I want to show it to my doctor.

[Gambit62 Administrator in reply to steveb12]

the guidelines can be found here

onlinelibrary.wiley.com/doi...

You can get to it from the BSH page but it involves doing some searches and knowing what you are looking for

As with most things B12 the devil is in getting to the detail

[steveb12 in reply to Gambit62]

Gambit62.Did you mean maintenance shots every two months(not two weeks)

[Gambit62 Administrator in reply to steveb12]

apologies - yes - did mean two months - have edited comment to correct

[clivealive Forum Support]

Hi steveb12 as Gambit62 says it is not uncommon for some symptoms to seem to get worse before they get better once the injections have started and the B12 begins to repair the damage caused by the deficiency.

And again as Gambit says if you have been diagnosed with P.A. your doctor should be aware that maintenance injections should be every eight weeks and not twelve. Ask him to check the N.I.C.E. guidelines.

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

It is also important to check your Folate levels as this and the B12 helps your iron to make red blood cells.

Be assured there is life after P.A as I've had it for over 45 years and I'm still "clivealive" at 75

[steveb12 in reply to clivealive]

My symptoms.

Tiredness,Fatigue,Memory loss Mood Swings,Dizzyness,Pins and Needles,Numbness in Arms and Legs,Tiredness even after long sleep.

[steveb12 in reply to steveb12]

This would imply some Neurological involvement would it not...........

[steveb12 in reply to steveb12]

If i present these symptoms to my doctor would you expect him to prescribe as per the BCSH Guidelines?

[clivealive Forum Support in reply to steveb12]

One would hope so but sadly my own and the experiences of so many "correspondents" on here show a lack of understanding among the medical profession these days. He or she really do need to read the guidelines I inserted above.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses (if symptoms persist) "until there is no further improvement".

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 wish you well and hope you get the treatment you need and deserve.

Please do come back and let us know how you get on.

[steveb12 in reply to clivealive]

I want to call up the treatment protocol on my doctors computer.

I went on to the BCSH site now called the BSH but was unable to find the page.

Can you help with that?

[steveb12 in reply to steveb12]

I have the NICE link thanks for that.

[clivealive Forum Support in reply to steveb12]

The NICE link actually "tells" the doctor how to treat you in a "question and answer" format.

Click on the NICE link above then on "Scenario Management" then in the box on the left click on "Treatment for B12 Deficiency

Here is the BSH link you were looking for.

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

[steveb12 in reply to clivealive]

Hello Clivealive

Im going to the Doctor on Monday to try and get my treatment changed from every 3months to every 2months. This is probably the best i can hope for.

Is it written anywhere that in the case of Pernicious Anaemia Every 2 months is the recommended protocol?

[clivealive Forum Support in reply to steveb12]

If you look at the BNF (see link below) guidelines you will read:

"By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months"

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

Your doctor may well have a copy of the BNF on his desk

[steveb12 in reply to clivealive]

In order to get 2 monthly injections It seems a diagnosis of PA is not enough on its own.

Neurological Involvement has to be present.

[clivealive Forum Support in reply to steveb12]

Yes but you listed some above didn't you?

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

Compare the above to your own list

[steveb12 in reply to clivealive]

I have the 6th jab in the morning and then an appointment on Monday when i will present my case for 2monthly jabs and also a continuation of the every other day jabs until no further improvement is being made.

I can feel these jabs are doing me good. I can feel they will take time to work.

[clivealive Forum Support in reply to steveb12]

I wish you all the best. Write down what you want to say and stick to the script, if possible take someone with you who can validate your symptoms as your doctor will be less likely to "pooh pooh" them in front of a witness and present any evidences you have calmly and only when necessary.

Goodnight from me.

[steveb12 in reply to clivealive]

Morning Clivealive

I managed to get a print out of my Blood Test.

Serum vitamin B12 109 ng/L 197.00-771.00ng/L

Serum Folate 19.8 ug/L 3.90-26.80ug/L

What can i learn from these numbers?

[clivealive Forum Support in reply to steveb12]

They say that you are B12 Deficient with neurological symptoms and your Folate is "within range"

Your doctor may well want to find out why your B12 is low.

Have a look at the list below and see if you can "see yourself" among the "people".

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Please remember I'm not a medically qualified person - your doctor is.

[steveb12 in reply to clivealive]

Im a veggie. Thats the only thing i know for sure is a factor.

A question.

From these numbers how can the Doctor be sure of his diagnosis PA?

[clivealive Forum Support in reply to steveb12]

You'll have to ask your doctor what tests he ran for P.A.

Do Intrinsic Factor antibodies and Gastric Parietal Cell antibodies "ring a bell"?

[steveb12 in reply to clivealive]

are these seperate tests?

[clivealive Forum Support in reply to steveb12]

An IFA test can help to diagnose Pernicious Anaemia (PA) but is not always reliable and it is still possible to have PA even with a negative result in IFA test (called Antibody Negative Pernicious Anaemia).

You really must address these questions to your doctor who gave you the diagnosis as I cannot possibly know what he/she has done.

[steveb12 in reply to clivealive]

i will ask my Doctor if these tests have been done when i go for my appointment on Monday.

[steveb12]

I found out that the test you to prove PA (GPCA IFA)were not done. Another doctor has now said i am not now Pernicious rather i am B12 Deficient.

When i asked for the 2month injections based on neurological symptoms

i have met with a resistance so strong it seems pointless and energy sapping to overcome it.

I did however get prescribed another blood test around the 2 months from loading dose time to see if my B12 is within range.

I can see some logic in this from the doctors point of view.

However it feels like the symptoms i am reporting are being completely

ignored.

Initially i took the decision to self inject which i will do eventually but

first i feel i should wait for that blood test to see if the doctors protocol

is effective. That means waiting six weeks.

I have a question.

I am thinking to not take any supplements until my next blood test.

If i am within range when tested in six weeks time then can i assume 3 month injections are enough for me?