High figures

[ADELESAXBY]

Hi I have had pa for 10 years now. When I was first diagnosed I had the loaded injections to start and then went on everything for weeks. My old doctor was happy to monitor this and I've had injections every four weeks since. My doctor has recently retired and I gave a new one who recently checked my blood test and says that this blood count figures are very high and that I try my injections every two months. Is it possible to have a high figure and still need monthly injections. Thanks adele

[Nackapan]

Yes. Also the blood test won't be correct as too close to injection. Does the current regime keep you well? If so stick to it!

[Sleepybunny]

Hi,

Have you considered joining and talking to PAS (Pernicious Anaemia Society)

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

"a new one who recently checked my blood test and says that this blood count figures are very high and that I try my injections every two months"

UK guidelines suggest that checking b12 levels after treatment has started is irrelevant.

UK B12 documents

I suggest reading all of these documents below, if in UK.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

"that this blood count figures are very high and that I try my injections every two months"

When you say "blood count" are you referring to B12 levels or full blood count?

Best piece of advice I ever had was to always get copies of all blood test results. I learnt from experience that GPs' comments about blood test results don't always match what's on the test results so my suggestion is to always check for yourself.

For years I was told everything was fine/normal and when I started to get copies I found abnormal and borderline results.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Some GPs think high levels of B12 are potentially toxic. Have you asked GP why he's concerned about high levels?

"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"

stichtingb12tekort.nl/weten...

"Misconceptions about a B12 deficiency"

stichtingb12tekort.nl/weten...

1) UK recommended treatment for B12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months.

2) UK recommended treatment for B12 deficiency WITH neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Do you have neuro symptoms eg tingling, pins and needles, tremors, memory problems, balance issues, brainfog, tinnitus, restless legs syndrome, eyelid flickering, muscle twitches etc?

How many loading jabs did you have at start of treatment?

It's possible that GP may consider repeating loading doses if your symptoms have deteriorated.

See BNF, BSH and NICE CKS links for more info on UK B12 treatment.

If you're in UK, you were fortunate that your original GP chose to treat you more often than UK guidelines suggest. I think some GPs feel very uncomfortable about treating people outside guidelines, this may be why new GP is reluctant to continue every 4 weeks.

There is also a cost implication of injecting someone more often. B12 injections are cheap but nurses' time to give injections isn't. It could be that GP is concerned about cost. Have you considered asking to be taught how to self inject?

Many UK members of this forum cannot manage on what NHS gives them and some choose to self treat.

Personally I think people should have a level of treatment that leads to minimal or no symptoms. However this would have cost implications for NHS in UK; there are forum members who find they need to inject every other day or even daily to keep symptoms at bay.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I am not medically trained. More B12 info in pinned posts on this forum.

[Bali1962]

Hi Adele, likewise I have had PA for a little longer than you and was aged 43 when diagnosed. I felt tired all the time. Looking back it was because I was over doing things generally. Have a close look at your commitments and see if you need to change anything. Keep records of what you eat and drink plenty of fluids but not too much alcohol. You need iron from meat plus vegetable based food and nuts.

I found anaemia because of low ferritin my main problem and heavy periods went on till 55. Now I don't have these and my ferritinn levels although on the low side seem to stay around 20. My appetite has decreased over the years and I always try to eat a balanced diet. As you get older, fatigue happens and can be related to menopause and lower oestrogen levels. Low vitamin D can be a symptom too so get that checked. I take cod liver oul capsules daily now.

I think we have to ve mindful that it is not always necessary to pump more Hydroxocobalamin injections into us as other problems may be there and those injections may not treat them all.

Best of luck

Alison