Concern about my B12 levels

[merpit349]

I was diagnosed with low b12 in January and received an injection then. I felt better for about a month but then started having symptoms again so I went to a doctor. She did more blood tests and my b12 came back really high so she decided I didn’t need another dose and that the previous low test was a one time thing. On top of that, my C-reactive protein and Antinuclear antibodies tests were positive (all the tests the rheumatologist did come back negative). I’ve now seen multiple doctors and my symptoms have steadily been getting worse. These symptoms are mainly fatigue and a daily headache but I’ve noticed issues with multi-tasking and my speed when I do school work. No doctor has been able to tell me what’s going on (and one straight up told me he thought I was completely fine). I’m now suspicious that all these symptoms are ultimately from a b12 absorbency issue originally found months ago. Does anyone else experience an almost constant headache when their b12 is low?

[Nackapan]

Yes when I was first diagnosed amongst other symptoms I had horrendous headaches classed as migraines, tension headaches ec t . A mix Infact. I'd never suffered before like this. In hindsight one of my earliest symptoms were headaches of the tension sort. I put this down to stress and menopause . Now realise more likely the decline in b12. Other early symptoms were being clumsy. Tripping over alot. Eyesight deteriorating. Tiredness . All put down to stress aging and menopause. Wrong but no blood test was done.

So I wouldnt ignore the blood test you've had.

There are about 26 different sorts of headaches. Neurologists had different views

I used to have 6 days sometimes I was bedbound in the dark.

I'm 20 months in and on regular b12 injections.

Still have many dibilitating symptoms. However headaches presently are far less severe and less frequent.

Watch the pain relief you use if daily as you can get rebound headaches. I alternated different types and also stopped paracetamol for 15 consecutive days as I wanted to prove not rebound. Thet were not but it was a concern. Chicken and egg.

It took time and lots of b12 in my case

I keep a record. Also upping my vitamin d helped.

Also ferritin levels dropping didnt help so on prescribed iron

Hope you have had folate vit d ferritin iron thyroid amongst the standard on your blood tests ?

The very fact you felt better after a b12 shot is surely saying you need it.

Blood levels of b12 after injections are often high and no indication of your need.

Doctors often use this to stop injections to the detriment of patients .

So go by your initial response to b12 treatment and get every other cause checked out too.

T c

[Nackapan]

P.s I now realise you are young so I hope you get it sorted soon .

Some of the stuff that masked my deficiency i wrote totally irrelevant to you!!

Write down your symptoms.

It's very hard to describe headaches .

Get bloods done for everything.

Keep going back to the doctors to make them listen.

PA tests usually done but if negative still unreliable. If positive you should be on b12 injections.

I'm passionate about getting b12 treatment if needed as one of my daughters got misdiagnosed with fibromyalgia when they coukdnr find anything else. Her b12 was not tested until she was 23 . She was found to be severely depleted with the sort of anaemia you can get with it. PA test was negative but with all her gastric problems not convinced this correct

We truly believe this was the root of her problems and let undiagnosed and not treated for years caused harm.

So you are right to persist to get to the right treatment for you. Do not get fobbed off

You know your body.

[wedgewood]

Didn’t the doctor try to find a reason for your B12 deficiency ? Main reasons are dietary or because of Pernicious Anaemia .. P.A. is an autoimmune condition , which seldom comes alone.A common companion to P.A. is a thyroid condition , which has some of the same symptoms as P.A. Perhaps have a private test? ( I hear on this forum that the NHS test is not very thorough ) But there are over 100 autoimmune conditions !

Some P.A. patients need more regular injections of B12 than the NHS is prepared to give , and we are obliged to self inject to keep the symptoms at bay . Best wishes .

[merpit349 in reply to wedgewood]

I had a test come back positive for intrinsic factor antibody then another time it came back negative. My doctor is convinced that the sublingual liquid Im taking is whats keeping my b12 “normal”. Hopefully I can use anecdotal stuff like this forum to convince her to give me treatment. Luckily my thyroid is normal so that’s at least a plus

[Sleepybunny]

Hi,

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Emmers5]

Best of luck! I wish I had been aware and been treated 30 years ago. You are wonderful to be trying to find answers and don't give up. If it is indeed PA your quality of life will improve with treatment