Blood tests normal??

[Lizreds1]

Had my bloods taken this week, the doctor just phoned me to say bloods were all normal, but the intrinsic factor hadn't come back yet. I have been ill for 6years, started with ringing in my ears,then chronic migraine then chronic fatigue, which has slowly got worse over the 6 years, I found an article that said what your fingernails say about your health, it pointed to b12, so I sourced the injections, I must stress I was absolutely desperate at this point, and felt like my life couldn't carry on, I had three injections of cyanocobalamine in the first week, and noticed an improvement, also it halted the migraines, I then found out my nan had nearly died of p.a nearly forty years ago, so I realised I needed to go to the doctors, I hadn't got many injections so I tried the sublingual. But my fatigue and migraines came back with a vengeance so had another shot, helped me sleep again, and not feel like I couldn't get off the settee! Wasn't a magic potion but I felt this was going to make me better in time. I had told the doctor I was injecting and using tablets, so what do I do now? Do I just self treat myself? Or can I get the doctor to recognise I may have p.a? I did say I was going to complain about the doctors if my test was positive as I was treated really bad by the GPs who said I was lazy!!!

[clivealive Forum Support]

Are you in the UK?

[Lizreds1 in reply to clivealive]

Yes, in the uk

[Gambit62 Administrator]

there are lots of materials in the pinned posts that you could draw to the attention of your GP to try and get them to recognise that B12 absorption appears to be an issue for you. Often seems best to do this in writing.

see how the IFA result is - but a negative would be a long way from proving that you don't have PA as it gives false negatives 40-60% of the time depending on the assay method.

The PAS also have a specific section on their website that GPs can use to educate themselves about PA and B12 deficiency

pernicious-anaemia-society....

[Lizreds1 in reply to Gambit62]

Thank you for your reply, I had taken 2000 mcg of sublingual on the morning, but the gp didn't seem to think that would make any difference! Is there a definitive test I can have? I would even pay privately

[Gambit62 Administrator in reply to Lizreds1]

unfortunately there isn't a definitive test for B12 deficiency. You could try testing for the most common cause of B12 deficiency - PA - ie IFA test though it might be rather difficult to get your GP to agree to test it on NHS - also it's not a brilliantly accurate test and comes up with false negatives 40-60% of the time depending on the method - so a negative doesn't rule out PA.

Other than that it's a question of looking at different markers and seeing what they tell you.

How frequently do you find you need to inject.

[Lizreds1]

I am really hoping the test comes back positive, sounds awful that I want to know I have pa, but I have had a massive battle for 6 years, trying to find out what the heck is wrong with me! The doctors didn't want to help me at all, I have seen a neurologist various doctors and a migraine professors who currently give me 32 injections of Botox into the most tender parts of my head! Plus all the other symptoms that I would defo say are pa! I went from being a fitness fanatic, to not being able to have enough energy to keep my home clean

[Lizreds1]

Isn't it awful to feel that nobody believes you? Not the medical profession or my family! I wanted something to prove just how awful I feel,

Think it's made me feel worse now feeling even more of a fraud!! lol I must admit I'm sort of second guessing it myself! Perhaps it isn't pa? But I do know the. Difference the b12 makes me feel, and the difference it's made to my migraines! Think I need injecting every day tho

[Sleepybunny]

Hi,

Have you read the whole BSH Cobalamin and Folate Guidelines?It's a UK b12 document.

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

Flowchart below from BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

Flowchart mentions "Antibody Negative Pernicious Anaemia".

"had three injections of cyanocobalamine in the first week"

Most people in UK are treated with hydroxycobalamin.

evidence.nhs.uk/formulary/b...

"found out my nan had nearly died of p.a"

pernicious-anaemia-society....

Other UK B12 info

1) Pinned posts on forum. I found fbirder 's summary useful. Link to summary in third pinned post.

2) PAS website

pernicious-anaemia-society.org

PAS tel no [phone]

Martyn Hooper's blog

martynhooper.com/

3) B12 Deficiency Info website

Lots of B12 info and an interesting blog

b12deficiency.info/

4) b12d.org website

b12d.org/

5) BMJ B12 article

bmj.com/content/349/bmj.g5226

6) BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

8) Book "Could It Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

I am not a medic just a person who has struggled to get a diagnosis.

"Isn't it awful to feel that nobody believes you?"

I truly empathise if you experience the disbelief that I did . For me it was far worse than the symptoms of B12 deficiency...it was the feeling that I was totally on my own. I was constantly told I was just depressed and depression was causing my symptoms and I kept saying that the reason I was depressed was because the physical problems (weakness, fatigue, muscle problems, neuro symptoms) prevented me doing the things I wanted to do.

Because the doctors were saying there was nothing seriously wrong (I had typical symptoms of B12 deficiency) it made it very difficult for those close to me to believe me when I said there was something physically wrong.

I would say that my experiences have left a permanent effect on me. I no longer fully trust the medical profession and have come to realise that sometimes the only person who is prepared to help you is yourself (of course there are lots of helpful people on this forum).

I was spoken to in an unpleasant way by medics on more than one occasion. Sometimes I don't know how I kept going and didn't give up completely.

Just wanted you to know that people on here understand what it is like.