Still feeling awful: I’ve just had my... - Pernicious Anaemi...

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Still feeling awful

Tebejay profile image
5 Replies

I’ve just had my blood test back for b12 and receptionist said it was within normal range. I asked for exact amount and was told it was over 500.

I had 1 b12 injection after low b12 diagnosis and then doctor decided to put me on tablets for 6 weeks.

However, I’ve seen no improvement in my symptoms. Sore tongue, tinnitus and ear pain, sinus headache, achy arms, extremely tired, low mood, blurred vision in right eye, brain fog. Nausea and dizziness.

I spent the whole weekend in bed, I fainted last week and ended up in A&E because I smacked my head on the floor. I don’t feel as sharp as I used to, I can’t remember things and have to write everything down.

I’m so upset because I hoped that the b12 deficiency result would be the start of recovery for me after years of feeling awful, but I don’t know where to go from here.

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Tebejay
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5 Replies
Sleepybunny profile image
Sleepybunny

Hi,

There are a lot of potentially useful links on your older thread on this forum. Might be worth having another look at the replies to your older thread.

If your low b12 is due to an absorption problem eg PA, Coeliac disease and there are other possibilities, then oral B12 tablets are not recommended in UK guidelines. Oral b12 is only recommended for proven dietary deficiency.

I think you mentioned being vegetarian before. If you eat plenty of dairy produce, eggs and foods fortified with B12 so dietary deficiency is less likely then an absorption problem might be a possibility. It's possible for someone to have more than one cause of B12 deficiency at a time.

"I’ve seen no improvement in my symptoms"

I think this is a big clue that your current level of B12 treatment may not be enough.

"I don’t know where to go from here."

Have you considered writing a letter to your GP about your concerns?

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Neuro Symptoms

"tinnitus, brain fog, dizziness" would usually be considered as neurological symptoms.

BSH Cobalamin and Folate Guidelines make it clear that anyone with B12 deficiency with neuro symptoms in UK, should be on following pattern of treatment, whatever the cause of B12 deficiency.

A b12 loading jab every other day for as long as symptoms continue to get better, followed by a jab every 2 months

If you're in UK, might be worth checking if GP is aware of BSH Cobalamin and Folate Guidelines.

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

I hope your GP is aware of the potential consequences of under treatment of B12 deficiency. There may be possibility of further deterioration.

More B12 info on your older thread and in pinned posts on this forum.

PAS

Think I mentioned on your older thread that it may be worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS members can access a useful document "An Update for Medical Professionals: Diagnosis and Treatment" which your GP might find helpful.

pernicious-anaemia-society.... Update article on Page 1.

I am not medically trained.

deniseinmilden profile image
deniseinmilden

I know it's hard work when you feel so rough but go through Sleepybunny's replies and the answers to your past posts. Tell the Dr you have tried the tablets and they don't work so you need a course of injections.

If that doesn't produce the results you want you could consider self injecting. It's much easier than it sounds and not impossibly expensive.

Look at Wedgwood's replies for information.

To find someone's replies, double click on their name to go to their profile and then look under the heading "replies".

If you are are self injecting please bear in mind that you may benefit from a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium, magnesium and iron.

Go for it - get yourself well again!

Sleepybunny profile image
Sleepybunny

Hi again,

Link below about writing letters when GPs want to replace injections with oral B12 tablets. Link has useful quote from NICE guidelines about oral cyanocobalamin tablets only being for people with B12 deficiency that is definitely due to diet.

If your diet has plenty of B12 rich food then I don't see how your doctors can be sure your B12 deficiency is solely due to diet.

b12deficiency.info/b12-writ...

I gave my GPs a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency".

There is a section on PAS website for health professionals which might be of interest to your GP. Health professionals can join PAS for free as associate members.

pernicious-anaemia-society....

Tebejay profile image
Tebejay in reply toSleepybunny

Thank you for your help and advice. Would you know if 1 injection can raise your b12 from 140 to over 500. I’m just wondering if the initial injection has raised it and not the tablets?

Sleepybunny profile image
Sleepybunny in reply toTebejay

I'm not medically trained but I think a b12 injection will raise B12 levels for a while. I think the amount B12 level rises will vary from individual to individual.

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