I felt so certain I had PA but my gp has told me both tests done were normal. My B12 has been between 190 and 246 and that was with supplements but it has always dropped down over the past few years.
I’ve been given a 3 monthly B12 and had my first dose but my GP has declined me loading doses even though I’m just bedridden with fatigue and have pretty severe peripheral neuropathy with no clear reason why.
just feeling a bit disheartened by it all
It can be quite deflating but I feel your Gp needs educating with regard to your results.........
Can a B12 blood test be inaccurate?
Low vitamin B12 levels can be measured as false normal or false high, especially in pernicious anemia, due to excessive amounts of anti-intrinsic factor antibodies present in the serum [5,6,7]
You say you were supplementing which would have thrown your results.
If you can pursue loading doses. Has the Gp offered ant other explanation?
He/she must treat symptoms.
See another Gp.
I feel disheartened for you! I know it is hard and you are so tired, but I think you need to challenge your GP - you may not get anywhere . Firstly if they have given you the B12 injection to help the neuropathy then they have that completely wrong - B12 for peripheral neuropathy is every other day! Low B12 can happen for many reasons and there is no definitive proof you don't have PA and they should treat the symptoms. Can you get your own Active B12 test done - via medi checks? If not this group will be able to give you loads of help...sadly with the system as it is you have to help yourself and get help from others as so many GP's don't understand it.
A test while you are taking suplements could show anything. . . . . .
I'm so sorry you are one of the many of us who can't get the treatment you need. I've been through it and know your pain (literally!) and frustration. The system is broken! 😕
If you have had 1 injection safely then please look into self-injecting.
Hundreds, probably thousands, of us do it and it's so worth it to get your life back.
Several of us had similar results and degree of impairment to you years ago and are now doing really well.
If you look up wedgewood 's posts and replies they have all the information you need and she is amazingly helpful.
Please, you don't have to suffer this!
Your blood results indicate possible b12 deficiency and the presence of symptoms are a slam dunk for deficiency. You should be on loading doses until no further improvement in symptoms.
The person claiming to be your doctor might be persuaded if not you need to find another route such as another GP, private GP or self treatment.
Best wishes you deserve so much more.
Do you have a mthfr mutation? My b12 is always below 240 but they don't consider this low which is complete garbage because it's been proven that people develop symptoms of b12 deficiency at 500 and below. I have all of the symptoms of low b12. My problem is I don't tolerate b12 supplements well at all because in my opinion my body's always been deficient in it so when it gets a high dose or ready to use methylcobalamin my body can't tolerate it and I lose sleep. Luckily I've been able to find low dose gummies to where I'm taking 3mcg of methylcobalamin a day. And every 2-3 weeks I take one dose of 200-500mcg of hydroxylcobalamin.
Like many of us, you will have to treat yourself.
Make sure to do short video selfies and keep a diary of symptoms so you notice changes and can look back to see real differences.
If you can get a diagnosis on your medical records, then great but it is a real struggle when those that are underdiagnosing and undertreating are causing the reference ranges to be inaccurate (many other causes of this too).
As well as this group, I have found the following useful:
B12 Society (website and fb group)
Sally Pacholok (books and YouTube film)
Dr Chandy (book and WhatsApp group)
Tracey Witty (website)
Sarah Myhill (fb page and many books - the CFS/ME one especially)
Make sure you get and keep copies of all blood and learn how to interpret them. Many doctors do not have much of a clue about this, unfortunately.
Good luck . Don't let yourself go further downhill. Reclaim your life by taking control.
When we are faced with a problem, we want to finde the cause to fix it. I’m an engineer so I think the same. However, finding the cause never really helped me recover.
Before I go into more about the journey to recovery, what was your !12 level before your first injection?
In addition to the info given by others,if your folate, iron, vitamin D levels are normal, focus on the b12 deficiency.
I was 190.not everyone experiences symptoms, but it sounds like you are.
once I was diagnosed and educated. I realized my issue started 4 years prior to me feeling extreme exhaustion.
It all started with brain fog, then down the road back pain, then down the road sciatica with numbness in my hand and foot. The brain fog was so bad I couldn't derive words nor comprehend or retain basic instructions in conversations with people. I couldn't keep more than one thing in my memory. I could only walk a mile yet I have always been very active (not athletic but active).
No amount of sleep or rest resolved the fatigue or any symptoms. the fatigue was so bad I was practically bed ridden.
Once I got the diagnosis of b12 deficiency, i was pretty much blown off or told I only need 1 injection a week then once a month. I was told by so many physicians that I didn't need frequent injections. But my career was at stake so I researched and learned it may require daily to every other day injections until you get better.
I don't like the IV doses as they are high and you may end up just peeing the excess b12 vitamin out.
B12 is harmless unless you have 1 of 2 issues with either your kidney or liver. If your liver and kidney function has been tested and is normal, B12 is not toxic at any dose. But I wouldn't do more than 4-5 / day.
Don't let any one tell you to space them out to once a week or monthly. Most medical practitioners do not understand that the injections need to be frequent and in many cases continued for life. Some long timers have been able to space them out but for now, focus on the short term.
Now, we get b12 from meat. If you are vegan/vegetarian, then injections will get your b12 stores in the liver topped off and you can continue to maintain that healthy level with oral b12 because the deficiency was due to your diet.
Also as mentioned by others, metformin can deplete it.
In my case, I'm a voracious meat eater so this tells me that I just flat out don't process b12 orally at any oral dose. Believe me I tried to dose orally.
For me, after 2 years, I still do daily injections (cyanocobalomin) , hydroxo can be done less frequently as in every other day (EOD) . If I space them out, my symptoms come back.Unless you huff nitrous oxide daily, it takes ~ 4 years for b12 stores in the liver to deplete. Thus your symptoms won't go away over night. It took me a year to get some sense of normalcy. This will be different if you were just not eating any meat. it might be quicker.If you don't treat the symptoms, they may become permanent. Thus your memory capability and other symptoms may never heal.Sleepybunny lists many good references.
If you feel daunted by them, start but don't stop with this one:ncbi.nlm.nih.gov/pmc/articl...Table 1 there lists all the misconceptions which most if not all of us still face when trying to get help in the medical community. I have yet to have a doctor understand this entirely. That being said, you are in the right spot! PAS forum is amazing. I donate at least annually to PAS because this has saved me. I highlighted the facts in that article and took it to the docs.
Exit I put the list of most important facts in a summary page so that they get the info w/o having to read it. If a doc doesn't listen, find one who will and will be willing to give you at least EOD injections.The injections took me from bed ridden to hiking mountains but far from marathons. I'm always improving and still have some struggles, but I'm so happy with my progress. There is hope.I gave up trying to understand all there is to know about b12 metabolism as it is SO complex. Focus on the things we have all recommended here. Take one step at a time and be patient with yourself and. your progress.i had to really minimize the things I did in life to a bare minimum: docs, b12 and work. I let everything else go. Get lots of rest. The best thing you can do is get a doc/nurse to train you on self injections.
You cannot test it once you start injections.
Gosh your symptoms sound exactly like mine! I have hypothyroidism and deficient B12 and folate! I’ve had a discussion with my Dr but she referred to a Haemotologist who sent a letter back saying they have nothing to do with it and enclosed a general letter about B12 deficiency! I am IF negative/ celiac negative. My B12 serum was 249 and my active was 44! I am a vegetarian but I have been supplementing a good B12 complex for over a year so obviously not absorbing 😞…. Thank you for your informative post 😁
Btw my back is horrendous I can’t walk around the block without pain. 😞
What amount of b12 have you been supplementing with?
Also, it takes 4 years to deplete the b12 stores in our liver, thus it can take a long time in any circumstance to get back to normal.
Read that article it explains a lot of things.
Diagnosis 
B12 loading dose done, still feeling symptoms
Diagnosis
Year 2 into PA Diagnosis Please Help ! My Husband said he feels like he is slowly dying 😪
New diagnosis B12 deficiency
