New I'd get nowere

[Leigh6873]

Went to doctors told him about all my symptoms seem related to my pa ,I said could I try more jabs and see a neorologist for my tremors and wierd tics .he said no way that my levels were over a 1,000 treble wat is normal .said all systems are anxiety and iv had it all my life .he's put my exfador venlafaxine up to 225mg just hope the anxiety in my stomach eases as at minuite I'm scared ov goin out x

[Paolini_Teracini]

healthunlocked.com/api/redi...

Try printing out this article or emailing the link.

At last my specialist has listened to me so don't give up, even though we have so little energy to fight, it will be worth it if you do have PA.

x

[Lisahelen]

Your level will always be high now you have had injections. I have recently spoken to another hu member whos level often exceeds the perimeters for actually measuring it in the blood(5999) and he still needs and receives his injections as luckily his gp at present is treating symptoms not numbers.

Have you tried otc products to help and see if it makes a difference?

[Sleepybunny]

Are you in the UK?

Have you read the "BCSH Cobalamin and Folate Guidelines"?

I think in these guidelines it says that once B12 supplementation starts the results of B12 blood tests are irrelevant. I was told the NHS should be following the BCSH Cobalamin Guidelines.

I found it very helpful to talk to the PAS. If you leave a message they should get back to you within a few days.

pernicious-anaemia-society....

01656 769 717

Office open every day from 8am till 2pm except Sundays

How often do you have jabs? In the UK, maintenance injections for someone who has neurological symptoms are every two months . Info on treatment is in the BCSH Cobalamin guidelines and also in the BNF (British National formulary) Chapter 9 Section 1.2

When you were first diagnosed how many loading injections did you have? In the UK, patients with B12 deficiency and neurological symptoms are supposed to have extended loading doses. This link below contains similar info to BNF in Management section.

patient.info/doctor/pernici...

Anxiety/depression can be a symptom of B12 deficiency.

b12deficiency.info/signs-an...

Some drugs/medicines can interfere with B12 uptake, folate uptake can also be affected.

b12deficiency.info/what-are...

b12d.org

[Leigh6873 in reply to Sleepybunny]

Iv had jabs every 3 month since 1982 all I remember is I was always I'll ,had ulcers all the time and crazy habits like my body was out ov control .iv always bin the jolly one who's Always happy and easy goin but last 3 years iv had alot of personal issues but no fight in me exept to hide away from everyone X he won't refer me about my nervous tics ,I feel like I'm not mad just desperate to get my life bak with the energy I used to have .up to the age of 18 I was doin gymnastics 5 days a week and was alot fitter bac then to wat I am now old age creepin in lol thanks for all my messages This site is a godsend xx

[19191919]

Agree with previous post, but venlaflaxin can have side effects too. I would speak to a pharmacist about it. Good luck. if the GP offered extra meds I would take it x

[Yalaha]

Take the data that sleepybunny has provided to the neurologist referral. Make a list of all of your symptoms between now and the appointment. Take someone with you if necessary for support or to be sure that you aren't railroaded in your present state. It's difficult to stand up for yourself when both mind and body are falling apart and you also don't present yourself well - we cant help it!

My serum B12 levels were over 4,000 before I was having relief from symptoms. I saw four neurologists before one figured it all out based upon previous lab work and my detailed personal story and his intense 90 minute physical examination. I could have cried I was so happy to hear an MD say that any doctor that goes by the B12 blood levels and not the patient's symptoms and outcomes were not doing their jobs!

Chin up, pull it together and get one who will listen. If not please start supplementing with something that works for you before permanent damage has been done.

Best wishes,

Yalaha

[Sleepybunny]

"I was so happy to hear an MD say that any doctor that goes by the B12 blood levels and not the patient's symptoms and outcomes were not doing their jobs! "

I wish for all our sakes that all GPs/MDs were like that Yalala. I seem to need huge amounts of B12 to get any relief but can't afford enough. My symptoms return within a couple of days.

The sad thing is that in the UK (where I am) recent documents and articles make it clear that patients who are symptomatic for B12 deficiency should be treated even if b12 levels are normal range. See links below.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

Perhaps your MD can work in UK for a while and pass on his enlightened attitude. The PAS, who have members from around the world, might also be interested to hear about an enlightened doctor as they so often hear stories about people who can't get treatment or even a diagnosis.

pernicious-anaemia-society....

Leigh6873,

Do you get copies of all your blood test results? I learnt from experience to do this after finding out that some results I was told were normal were not normal when I got copies. Most surgeries will charge for this.

I get copies of ferritin, folate, B12 and FBC (Full Blood Count) known as Complete Blood Count in USA. The FBC can have useful clues on it. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis is sometimes found in people who are B12 deficient. It can also occur in those who are folate deficient.

patient.info/doctor/macrocy...

patient.info/doctor/full-bl...

Symptoms lists

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See Symptoms Checklist. I ticked all my symptoms and gave a copy to my GP.

Some people just need more B12 than the standard amount.

Useful books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

I gave a copy of this book to my GP. Published in Oct 2015 and very up to date with recent guidelines.

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

martynhooper.com/

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

[Leigh6873]

He said No way can I av more b12 cause its treble wat it shud b and my symptoms r all anxiety based and iv bin like this all my life ,even tho iv known him around two months ,as usual doctor suddenly passed away and I didn't know how important this all was back then .feel like turning up at mental health unit .Think I'd av pay private to get proper awnsers ,I'm a shadow ov myself since last 12month x