Have I got Pernicious Anaemia ? - Pernicious Anaemi...

Pernicious Anaemia Society

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Have I got Pernicious Anaemia ?

KStandKen profile image
5 Replies

I was diagnosed by my GP as having Pernicious Anaemia around 5 years ago, I assume this was after one of my regular blood tests for type 2 Diabetes. Since then I have been having 1ml. injections of Hydroxocobalamin / Vitamin B12 at the surgery, originally every 12 weeks. However, as I didn't seem to feel any benefit, I asked if the gap between injections could be reduced - it was, to 9 weeks. The Diabetes nurse at my surgery told me PA sufferers were at one time given injections every four weeks, but I'm tempted to believe that this no longer happens due to cost-cutting by the British National Health Service. I have often stated at the surgery that I don't seem to feel any benefit from the jabs, but is it the case that I would feel much more fatigued without them, or that they are not doing any good at all?

I am a 71 year old man, happily retired since 2011, and as mentioned, I have type 2 Diabetes, for which I inject myself with Insulin twice daily and also take 3 x 850gm Metformin tablets daily. I also have high cholesterol and hypertension. I also use a CPAP device during the night for Sleep Apnoea and usually get around 7 hours sleep. I also carry a lot of excess weight, which has increased since I retired.

I frequently feel very fatigued, but not all the time. I realise that the extra weight I am carrying must have an effect on taking exercise etc, but I don't believe the tiredness I feel after exertion is related to the fatigue I suffer.

Any opinions on this would be gratefully received. Thankyou folks.

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KStandKen
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clivealive profile image
clivealiveForum Support

Hi KStandKen

P.A. is for life. If you have neurological symptoms your injections should be every 8 weeks and even then many of us require them more frequently.

Have you had your Folate level tested?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I too have had Type 2 diabetes since 2015 although fortunately it is controlled simply by Metformin (twice a day) diet and sitting down exercise.

I wish you well

.

Gambit62 profile image
Gambit62Administrator

I would talk to your GP about the continued use of metformin - it isn't recommended for older patients but not sure if they give the cut of as 70 or 75. It may be that it relates to the fact that metformin inhibits B12 absorption in which case it would be irrelevant but it may be other factors.

When you say that the shots don't have any effect - do you notice nothing or do you notice a slight improvement that doesn't last long. If you really don't notice any difference at all that would suggest that B12 isn't the source of the problem - but if you do have an improvement, however short lived, that would suggest that the problem is that you aren't getting enough B12.

Unfortunately there is a huge overlap between the symtpoms of diabetes and the symptoms of B12 deficiency.

Have you been able to talk to the diabetes support team about changes you might make to exercise and diet to reduce some of the weight as that is unlikely to be helping with the diabetes.

clivealive profile image
clivealiveForum Support in reply toGambit62

KStandKen and I both have P.A. with B12 injections plus Type 2 Diabetes and are on Metformin (and over 70) - yet when I queried the adverse effect of Metformin on B12 I was told by the "manufacturer" that this would not apply because I was getting it via injections.

I'm coming up to 77 and this is the first I have heard of an upper age limit on the use of Metformin and I saw my doctor only yesterday.

Sleepybunny profile image
Sleepybunny

Hi,

I wondered if you were on any other medication besides metformin. Some drugs can interfere with B12 or folate metabolism.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

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). Book is up to date with UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

" originally every 12 weeks"

In UK, there is usually a period of loading jabs first. Did you have loading jabs when first diagnosed?

For B12 deficiency without neuro symptoms, UK treatment is..

6 loading B12 jabs over 2 weeks followed by jabs every 3 months

For B12 deficiency with Neuro Symptoms, UK treatment is

A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.

If you never had loading doses, I wondered if GP might consider giving loading doses now?

UK B12 treatment can be found in links below.

BSH Cobalamin and Folate Guidelines

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

BNF

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

NICE CKS

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

I am not medically trained.

Marz profile image
Marz

Many of your symptoms could possibly linked to your thyroid ... have you been correctly tested ? If you just had the TSH tested than that tells you very little and is only a small part of the story . Even if your thyroid is working by secreting T4 - then is it converting into the Active hormone T3. I have read that all diabetics shoudl be tested for thyroid issues. It is just so sad that Docs can rarely test correctly or understand the results :-(

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