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Pernicious Anaemia Society
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Confusing doctors appt

Tested low for b12 - 178 (187-800) last June and been on 3 monthly jabs since. Tried yet again to get them more frequently today as the tingly hands, poor memory and skin crawling feeling seems to return before my next injection is due. Doctor said a few things that puzzled me and wondered if anyone could clarify or advise what to do next. Have an appointment for yet another b12 test and if it's not low then she will send me to neurologist to investigate symptoms.

She said:

1. The guidelines suggesting every 8 weeks for neurological issues are old (she said 1990s). When I said the cks site was updated in 2015 she said there was no clinical evidence for increasing frequency

2. Apparently having the injections more frequently will have no effect

3. She said if I had seen her rather than another doc originally she would have never treated with injections as 178 is not even low

4. She said as I had never been anaemic (never had clinically low haemoglobin) then I can't have an issue with b12 and definitely don't have pernicious anaemia

When I questioned how the injections made me feel better she said it was psychological. When I said the crawling feeling on my skin getting so bad I wake up covered in scratches where I have tried to scratch them off in my sleep she said it was psychological.

I just don't know what to do next. My boyfriend has offered to inject me. Is there any point continuing with nhs investigations?

Thanks

4 Replies
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I had exactly the same problem six years ago with my "one size fits all" and that was after nearly 40 years of having Pernicious Anaemia. He simply would not believe me when I said I noticed a return of symptoms in the run up to my next injection.

I then joined the Pernicious Anaemia Society and posted the question of their then forum "Am I the only person in the world......?" and was amazed by the number of folk with the same problems.

I learned all I could manage and confronted my GP and eventually "persuaded" him to increase the frequency of my injections - a small battle won in a big war.

If you feel that this is a battle you cannot win and your boyfriend is willing to give you injections than that may be the way to go, but keep your ignorant doctor in ignorance and continue to accept injections from your surgery. You cannot "overdose" on B12.

Another alternative is to join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

It costs £20.00 for a year's membership and they may intervene with your doctor on your behalf.

Do you know what your Folate level is?

It is important that your Folate level is monitored as this is essential to process the B12.

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well and bid you goodnight

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Reply

I can see why you're confused. Your doctor seems to be talking out of both sides of her mouth.

"1. The guidelines suggesting every 8 weeks for neurological issues are old (she said 1990s). When I said the cks site was updated in 2015 she said there was no clinical evidence for increasing frequency"

The guidelines are up to date. As for clinical evidence, if you go back far enough, the standard treatment was one injection a month. Where is the clinical evidence to decrease it to once every three months? It was thought that hydroxocobalamin lasts longer in the body than cyanocobalamin, but there is no actual proof of that.

"2. Apparently having the injections more frequently will have no effect"

She bases this off of what, exactly? Maybe she should try it before dismissing it as an option?

"3. She said if I had seen her rather than another doc originally she would have never treated with injections as 178 is not even low"

It's never reassuring to hear a doctor proudly boast of their own incompetence, but there you go. She's just confirmed that she knows nothing about B12 deficiency.

"4. She said as I had never been anaemic (never had clinically low haemoglobin) then I can't have an issue with b12 and definitely don't have pernicious anaemia"

This line of thinking stems from the erroneous belief that anemia is the first symptom of B12 deficiency. It usually isn't the first symptom. It is entirely possible to have PA and never show anemia.

As for the noticeable benefit all being psychological, try asking her; If it works, why not just roll with it? B12 is an inexpensive water soluble vitamin that has no known overdose level.

If you're telling your doctor that it relieves your symptoms, she should be willing to treat you to the point of relieving your symptoms even if she, personally, thinks she's giving you a placebo. I do agree with Clivealive. If you go the route of having your boyfriend inject you, you're probably better off not mentioning it to your less-than-knowledgeable doctor.

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Hi I had many years going through the same battle as you are, really didn’t want to self inject but had no option in the end, my partner now does my injections as and when I feel I need them, I did lots of research first to make sure we could do them as safely as possible, shouldn’t have to I know & it took me a long time to pluck up the courage to do this. The doctors just don’t want to know and are not listening to patients only results, there is plenty of information on here where to source injections etc good luck

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Answering your points.

1. She does not know what she is talking about.

2. She is an idiot.

3. Wrong again.

4. Blackball her.

Your BF sounds a keeper, good for him.

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