Exhaustion prior to next B12 injection

That is truly shocking and distressing and I am so sorry that you are going to have to wait another week.

It has only happened to me once in 44 years that there wasn't a nurse available and my GP "volunteered" to give the injection and I think he was more nervous about it than I was.

I think you need to jump up and down and wave your arms about to emphasise just how badly you are affected by this delay and how much "potential damage" it can cause as maybe they don't realise how debilitating having to wait an extra week is for you.

Be strong and be firm!

I wish you well for the future.

Sadly we are all different and sometimes symptoms seem to get worse before they get better, so please bear this in mind as you have each injection. This is not said to worry you and hopefully you may well be fortunate that you get to feel better from day one.  

Keep to your "fairly healthy diet" and make sure you get plenty of folate (b9) which you can get naturally by eating green leafy vegetables & beans etc. If you Google "Folate rich foods" you'll get plenty of options.  Folate is needed to "work with" the b12.

I am not a medically qualified person so can only speak from my own experience but there is life after P.A. and I'm still "clivealive" after 45 years at coming up to 75

​I wish you well for the future

Hi Clive

Have read many of your posts all very informative

I was at Drs again yesterday as can now hardly walk and the stairs are a nightmare. Had 6 loading doses beginning July and down for 3 mth for next one but am so unwell and in need of more. Doctor has referred me to a specialist to check its nothing else but everything is pointing straight to my b12!!! Why won't they just keep giving injections? I feel 100 and am only 51 any advice?

Hi  Mable1964

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

These are the guidelines your doctor should be following according to N.I.C.E and the B.N.F.

Do you know what your folate levels are and are you taking any extra folic acid to go with the B12 as it is essential that the two work together.

Let's hope your "specialist" is more savvy about B12.

MAKE A LIST OF YOUR SYMPTOMS written down and if possible take a friend or relative with you who can witness to your "sufferings".

I normally take my wife but I can't spare her at the moment as we are away on holiday with the grandchildren 

I hope things start to settle down and improve soon - you are still early days into repairing the damage done to your nervous system and I wish I could be of more help but can only "speak" from experience.

I wish you well.

Hi  Mable1964

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

These are the guidelines your doctor should be following according to N.I.C.E and the B.N.F.

Do you know what your folate levels are and are you taking any extra folic acid to go with the B12 as it is essential that the two work together.

Let's hope your "specialist" is more savvy about B12.

MAKE A LIST OF YOUR SYMPTOMS written down and if possible take a friend or relative with you who can witness to your "sufferings".

I normally take my wife but I can't spare her at the moment as we are away on holiday with the grandchildren 

I hope things start to settle down and improve soon - you are still early days into repairing the damage done to your nervous system and I wish I could be of more help but can only "speak" from experience.

I wish you well.

Hi Denise, I'm not sure how this works but the original post (at the very top) credited to "Guest" over a year ago was actually mine.  I guess that as I hadn't actually joined the Patient group at that time, that's what I was called.  I have since made many comments on this thread as "clivealive"

Anyway, here it is again (in italics) which very much mirrors your comment.

I've been on Cytamen (four weekly) B12 injections for 38 years due to PA following partial gastrectomy in 1959.

In the days running up to my next injection I sometimes feel quite exhausted and to combat this scheduled a few 3 week injections - perhaps twice/three times a year.

However my nurse is now refusing to allow me to do this. Am I the only person to experience this feeling of exhaustion prior to an injection??  [sad]

In the above I stated that I've been receiving B12 injections for 38 years (from 1972) - it is now 44 years on so my question must have been put up on here six years ago.

The nurse mentioned reported me to my doctor who called me in and steadfastly refused to alter my frequency of injections from the four weeks I'd started on all those years ago.  When I tried to explain my symptoms he simply laughed and said "It can't be the P.A. because you are getting the injections" and tried to suggest all sorts of other reasons why I was having the pains, pins & needles, burning legs and feet, numb thighs, unsteady gait etc etc.

So I did what the first responder suggested and joined the Pernicious Anaemia Society and began to learn what it was all about and at the same time badgering my doctor until about three years ago he reluctantly allowed me to have the occasional three week injection and changed the prescription to "as instructed".

However, this was still not good enough for me, so a year ago I sneakily took advantage of my doctor being on holiday to see another in the Practice for the results of a routine blood test andto cut a long story short, by July this year I had managed to get her to change my injection frequency to every three weeks.

The reason I am on such a short frequency of injections is because I was started on cyanocobalamin in 1972 and when it was tried to put me on the three monthly shots of hydroxocobalamin in the 80s I had bad side effects and was unable to cope with the twelve weeks.

You don't say whether you are B12 Deficient or have P.A. or what frequency of injections you are on.

According to the BNF treatment with Hydroxocobalamin is:

"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

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency, 1 mg every 2–3 months"

Sadly many doctors are woefully ignorant about B12 Deficiency and P.A. and if they even bother to read the guidelines they just read the first section. If you have neurological symptoms the should carry on down and read the next (highlighted) section.

My advice to you is to list all of your symptoms and present them to your doctor for him to read.  

Don't rely on your memory when you are at the appointment as you are liable to get flustered and forget things and if possible take someone with you who has witnessed your symptoms.  Your doctor is less likely to be so dismissive in the presence of a third person.  

Be firm but courteous, persistent but try not to become too emotional.

I hope this helps and I wish you well as I'm still "clivealive" at 75.

Hi Clive, Thankyou so much for taking the time to write such a lengthy and information filled reply!! I myself feel so ignorant of the fact I know so little, I was shocked you know so much!! After months of feeling "unwell and very tired" but not knowing why, or even able to explain properly how I did feel, and after a few blood test, I was diagnosed as B12 deficient. I was then 46, im nearly 54 now. I have injections every 12weeks, which i feel im more than ready for by 10 weeks!! I have spoken to the practice nurse a few times and have the same response of "oh you'l be fine now once you have this". Really!!?? I have asked if i could have injection sooner, only to be told, NO! It is a big struggle waiting for the 12th week, as iv just done, iv had injection today, thankgod!! I will see my doctor and try to get more information about my situation, and see what "help" (if any) he can offer. Thanks for taking the time 😊

Hi Denise, it's probably importnat to try and work out why you were/are B12 Deficient so that when you see your doctor the reasons can be presented to him along with your list of symptoms. Can you "identify" yourself from the following? I know you are not yet sixty but I left it in because as we get older stomach acid gets less and this is important in "capturing" the B12.

"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.including the contraceptive pill.

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.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency."

Finally, do you know what your Folate level is? You need to have your folate at a fairly high level as this is essential to process the B12 you are having injected and it can get "used up". I've taken 1 – Folic Acid 400µg tablet every day for more years than I can remember and my level back in March was 18.2  ng/ml  range  < 3.10 – 20.50ng/ml>.  They can be bought cheaply over the counter.

Remember, I'm not a medically qualified person and can only speak from my own experiences. 

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

These are the guidelines your doctor should be following according to N.I.C.E and the B.N.F. but unfortunately doctors don't always read down as far as the highlighted third paragraph.

If you still cannot persuade your doctor to increase your frequency of injections to at least every eight weeks I suggest you join the Pernicious Anaemia Society.  It costs but £20.00 for a year's membership and if you explain your difficulties they may intervene with your doctor on your behalf

Do you know what your folate levels are and are you taking any extra folic acid to go with the B12 as it is essential that the two work together.

I wish you well

I am the "Guest" who wrote the original post at the top seven years ago after I had had P.A. for 38 years - now 45 years ago since I was diagnosed in 1972.

Sadly it took me six years until the middle of last year to persuade my surgery to increase the frequency of my B12 injections because of the return of neurological symptoms in the run up to my next jab.

Testing your serum B12 level once you are on injections is pretty much next to a waste of time unless it comes out very low.

Do you have a diagnosis of Pernicious Anaemia? If so what interval of injections are you on?  Every eight weeks or every twelve weeks?

If you do have P.A., with your neurological symptoms you should be getting your injections of hydroxocobamalin at least every eight weeks according to the British National Formulary Guidelines.  Perhaps you could point this out to your nurse/doctor.

In addition it might pay you to ask your doctor to check your Folate level as this is essential to process the B12 you are having injected and it gets "used up" doing so..

Remember, I am not a medically trained person just one who has struggled with this disease for a very long time.

I wish you well