That's it

[Only1bigT]

Well had IF and PC test back apparently 'negative' and as post loading dose B12 my levels have gone from 116 to 2000 my GP says it's not PA so not to worry cos B12 levels will be ok for at least a year!!! Haven't got the energy to dispute this perhaps he's right will have to wait and see

[Secondchance]

The important thing is what symptoms did you have and do you now have? BCSH guidelines categorically state you can have negative result (only 50% sensitive for IF antibodies) and still have PA, continue on basis of symptomatic response. Treatment is not based on blood results! Of course you have a high level just after loading doses!!!

Gather your thoughts and evidence and someone to support you and make an appointment with GP to discuss again. Useful to have it written out. Useful to ask the GP for their understanding of why x, y or z have improved, if it wasn't B12.

Good luck!!

[Poppet11 in reply to Secondchance]

BMJ article states clearly that serum b12 readings after treatment commences are no indication of how effective the treatment is being.

Forget about the PA - it means little or nothing.

[engels in reply to Poppet11]

It's another example of the blood serum test doing more harm than good once treatment has started as doctors simply do not understand it.

[Only1bigT]

Thank you all for you replies but I kind of understand why he said this as I told him I don't feel much better still exhausted and feel low in mood my tongue symptoms have improved and I don't have any parathesia, I've never lost any work and have maintained my caring role for elderly parents, I sleep very little inspite of exhaustion so he can explain all my symptoms as life style and stress which to be honest is what I thought were causing my symptoms . The only symptom I couldn't rationalise was the exertional breathlessness but thought that may be my fitness level and this hasn't improved either. I'm not over weight never smoked and I think eat quite healthily but still feel all these symptoms in spite of my now high B12 levels so perhaps it's understandable that he has dismissed the low B12 as coincidental.

[LesleyYorks in reply to Only1bigT]

Hello Only1bigT

I feel for you. You appear to have a similar symptoms and diet to myself and mum, only when we went to the docs she did not accept it was B12 - due to blood levels.

Here is something to get checked - Vit D levels. Shortly after taking sublingual B12, I asked doc for vit D test too - we both came back in the insufficient level. Doc was not concerned said it was low due to winter, but I read it should be much higher for normal function and that "Low vit D can reduce absorption of b12 in the small intestine as useful bacteria can die)

So we started taking vit D (2200iu) and magnesium (+ seeds and nuts) (need D and Mag together) and B12 sublingual (methyl) + folate 400mg and we also took probiotic to put good bacteria back.

(Ask if you want more details)

My energy/thinking/tremors/palpitations/behind eye pain and many other symptoms improved gradually and within about 6 weeks it was much better. Mum took much longer to improve.

The reason I was low in D is I have used high factor sun block for years as I come up in lumps in the sun, but it was doing me no favours as I was very low (half way to rickets level). Mum had been inside much more than she was in the past.

We had both also been very stressed and stress uses up B Vits, magnesium and Vit C.

You will see from my recent question that we are still struggling to tackle the numbness, but we have seen improvements so I thought I would pass this on.

Much love at this time.

Lesley

[Only1bigT in reply to LesleyYorks]

Thank you so much for your reply Leslie I have ordered some good quality supplements and will give them a try fingers crossed it will help. I am an experienced nurse and my GP said nurses are the worst patients because they think to much and don't accept diagnosis in other words neurotic so didn't go and see him for a long time. Going to give this a go and then go back to him in a few months if no better x

[engels in reply to Only1bigT]

Your GP hasn't a clue judging by your first post.

[Leilanilea in reply to engels]

Exactly! Where Do they get their medical licenses from...Motor Vehicle Department?

[LesleyYorks in reply to Only1bigT]

Good luck with things. Keep in touch.

Lesley

[Leilanilea in reply to Only1bigT]

I'm also an experienced (now retired) nurse and it just infuriates me to hear that drivel!

[Bluedragon]

Just seen your post, similar to mine. Unbelievable isn't it!!