Advice

[Ellesbells12]

Hi everyone, I hope you’re all safe and well!

Routine blood tests have shown my B12 and folate levels to now be normal (whatever normal is), but feel like I’m feeling worse and worse and they’re telling me nothing else is wrong with me.

Short bursts of stabbing pains all over my body, moments of feeling breathless, tight chest and back like a bass wrapped around it, sickness, palpitations, panic and anxiety to name a few.

I don’t know what to do, I don’t know what else could possibly be causing me to feel to feel so rotten

[Nackapan]

Are you still having regulat b12 injections?

[Ellesbells12 in reply to Nackapan]

No they’ve stopped them they said I don’t need them anymore, taking over the counter supplements should do me fine and have now tried to say I don’t have pernicious anemia. I know by body and don’t trust what they’re saying, I feel like I’m being palmed off because I’m so young

[Nackapan in reply to Ellesbells12]

I'm sorry to hear this. Testing of b12 levels should not be done once on injections.

There was a recent post quoting from BCSH (haematology)

I would write I . Copy in practice manager.

Keep it short.

List symptoms

State improvements on b12 injections

State getting worse.

Ask for readings of symptoms if not b12 deficiency!!

There have been many links given on sleepybunny repiles

If all elses fails or while yoh ate waiting consider sl ?

But keep up the pressure at your G.p

Hopefully it's not your age . My daughter of similar age and having had a fight I have as well double her age . Recently had to act on my mums behalf as hers stopped at the age of 91!!

She had had one now and reinstated

We should not havd to battle to be treated. What reason has the Gp given for your symptoms??

Has your Gp noted improvements after injections

Have you had referrals to further investigate??

[Nackapan]

Sorry if I'm repeating myself but have I mentioned POTs to you before.its often missed as is hypermonility.Two things my daughter was eventually diagnosed with after years of symptoms and it being labelled fibromyalgia.

I would rather repeat than foget to mention it.

She was severely b12 deficient which was not diagnosed early either. Also had megobalastic anaemia . All very late after brain MRI s.ect Attempts to send her down the mental health route. Rheumatologist discharged her . She had alot if pain.

She was having anxiety attacks.

She explained she would stop and know she wasnt actually anxious about anything .

On one occasion went to a , e alone to get her heart monitored as racing and painful. She is a very calm person and she was having battles wondering what was happening. Very scary. It was proved in the end she was right. Very difficult .

Her body function was out. An autonomic disorder can physically causes anxiety feelings and a fast heart rate.

Read up on it.

Good to get it ruled out if nothing else.

More common at your age and never comes alone.

Also notoriously missed!! Low b12 untreated caused havoc with your centrsl nervous system and can be the underlying cause of so many things. It comes out differently in people.

You know your body. Its not working properly..Having b12 will fo no harm even if it's not the full picture it's something that had been found and treatment should continue. Did you have the intrinsic factor antybody test?

Keep pushing for referrals.

This is outside Gps knowledge but book a double appointment get listened to properly. Get help from someone you trust . I'm passionate that people should get listened to and helped.

Take care

Hope you get answers soon.

[Cherylclaire Forum Support]

It sounds as if you already have a diagnosis of PA. If that was based on tests, those test results have already proven PA. Usually Intrinsic Factor antibody test (IFab) comes back positive or Gastric Parietal Cell antibody test does. Pernicious anaemia has no cure, and so won't go away. It can't. The B12 is not a cure, it is to prevent you getting worse. So unless they had it wrong, and have an alternative diagnosis, you have PA still.

Ask them what your diagnosis was based on, what has changed their minds, and what their new diagnosis is. ( Otherwise, why stop an effective management treatment for a lifelong condition ? )

The tablets will follow the same pathway as food (extrinsic factor) and so if B12 unable to be absorbed from food, tablets will be similarly ineffective.

Your B12 levels are not an indicator of anything significant after your injections start, since they are measuring what has been injected into your system. Injected B12 cannot cure you of PA. They give you what your body is unable to process from food. Healthy vegans can take tablets as an alternative because there is nothing wrong with their ability to process B12.