I wondered if anyone would be able to help in case I really am going mad. I’ve been feeling increasingly unwell for years really but dizzy spells/shoulder pain/occasional pins and needles in arm prompted me to get a blood test a few weeks ago. My mum had pernicious anaemia her whole life and thyroid issues since her 40s so it was on my radar.
the results flagged my folate level at 4.5 my b12 at 248 and my white blood cell count at 3.17.
the doctors seem totally unbothered by my complete exhaustion which is impacting my ability to look after my children and I’ve had to cancel lots of work due to really low mood and exhaustion.
The doctor suggested prescribing folate. Ur I told him I suspect it is pernicious anaemia as my b12 results over the last 5 years have steadily been getting lower and low white blood cell count always is flagged. He has referred me to haemotology and suggested folate. I shared with him the NICE guidelines about starting b12 injections if b12 is suspected but he says my b12 is completely normal and is not low.
to placate me he has booked me in for another blood test on Wenesday.
Am I making a song and dance about nothing? I know I don’t feel well and I know these things seem on the low side. But should I just have accepted the folate and waited to see if it helped me?
I would appreciate any kind advice please. Feeling a bit fragile and frustrated.
thank you 🙏
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Kiwi47
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Thank you, I wonder if I should have taken the folate prescription though? He seemed very certain and kept repeating that my b12 wasn’t low.
I have had a looked and they didn’t test for vit d or ferritin that I can see…the next blood test he said was to check the levels again and to check IF. I explained it’s not a great test as only shows up 50% of people with PA. I also told him it’s not something I want to have as it felt I was trying to fight to have an autoimmune condition!!!! I said ‘doc, this isn’t something I’m wanting to be diagnosed with but I want to feel better and I think this is what is wrong’
Sigh.
Hopefully next bloods will show all is fine. And hopefully I will also miraculously suddenly feel great too!
Hello. I’m having a similar problem with my GP although they have agreed to give me the IFAB test and Parietal cell antibody test. I have also paid for a set of private blood tests that have cost £289. The problem is that they a reluctant to offer any further tests until the B12 falls under 200. He should be the guidelines and I also too the NICE guidelines in but he said they don’t follow those!
We all know that the medical profession is notoriously ignorant about B12 deficiency . Your B12 serum result of 248 could very well be low . Up to 80 % of that sum could be inactive B12 which the body cannot use . YOUR SYMPTOMS SHOULD BE THE FIRST CRITERIA TO BE CONSIDERED . They will duck and weave to try to stop giving B12 injections ( cost of nurse to the surgery ,not the actual b12 ) . The fact that your mother had Pernicious Anaemia should also be a major consideration. It is acknowledged that there is a genetic link with P.A. P.A. Can only be treated successfully with B12 injections .
In Japan , you would be treated already with that B12 result.
Do not despair . Most of us on this forum have had difficulties getting the treatment we need ,and have resolved the problem ourselves. Come back and tell us how you get on . You will get help here if you fail to get it from your doctor .
Thank you that is encouraging. It is an odd feeling to be telling the doctor what he should be doing. I have felt very depressed about it as I feel sometimes so exhausted and depressed I struggle a lot.
My mum died in October of stomach cancer and I wonder if the grief and stress is what is triggered this.
Hopefully I will know more this time next week when results are back in I hope and I will just take it easy, avoid bright lights which seem to bring on dizzy spells, any sort of stress (haha with four children!) and basically doing anything after 11am.
Good luck to all and thanks, the support is really appreciated.
So sorry to of your mother’s passing. Your doctor should take you more seriously especially with your mother having PA and thyroid conditions.
My mother also has PA and hypothyroidism and I witnessed her health declining before I intervened and set her up for SC methyl B12 injections like myself. To date, she’s had a remarkable improvement in her health.
I highly recommend you do the applicable antibody tests for PA and for thyroid antibody tests as this could also explain many of your symptoms. PA and Hashimoto thyroid disease share similar symptoms.
Once you get your results you should begin self injections of B12. Based on your symptoms, give yourself plenty of time of your self injecting of every day, or every other day, for about six months to a year and reassess how you’re feeling. I guess that you’re in New Zealand? I’m in Australia and I can buy Hydroxocobalamin B12 over the counter in pharmacies here, assuming that’s the case where you’re from.
Get your nurse/GP to teach you how to subcutaneously self inject safely, if not YouTube has great videos on this. Also add an excellent B Complex. Many resources available on this forum to support your healing process.
Lastly, do not be discouraged by doctors and their lack of knowledge of PA and the symptoms. It’s across all medical professionals who lack understanding and the consequences of long term B12 deficiency.
Your B12 is extremely low in my opinion for which you are experiencing poor health as a result. Many of us on this forum have been in your situation and are very understanding of your situation. Stay positive and keep us posted with your healing journey.
I’m sorry to hear you’ve been so poorly and for your Mum’s passing too.
You’re in good company here - a lovely bunch of compassionate and knowledgeable people.
Go for all the testing that the doctors want to do (if you can afford it, energy and money wise). Ruling things out is just as important as ruling something in and getting that diagnosis.
Aussie doctors seem to be just as ignorant of PA and anything to do with B12.
I ended up just biting the bullet and starting injections at home rather than fighting them on it. We can get it over the counter here so easy peasy.
No. You are interpreting the guidelines correctly. In my case the B12 was so low it was off the mesurable scale but my symptoms didnt reflect that. You want B12 and Foliate plus iron at least.
Doctors get hung up ob serum B12 when the reality is much more complex.
Consider a private consultation, the real indicator is will two weeks of B12 every other day impact the symptoms. But you might also want your GP to test for homocystine and methy malonic acid which NICE mentions and act as better indicators than serum B12.
Your b12 is in the borderline range according to nice guidance. Do you take a daily multivitamin? If so, this will contain b12 and will have falsely elevated your result and should be taken into account.
My daughter was treated with a similar level to yours, and had a rapid and significant improvement in symptoms. It's still important to rule out other potential causes, but a trial of b12 would help answer whether you are deficient or not.
It's understandably hard to discuss/convince GP's, especially the younger ones who have grown up looking at the PC with NICE guidelines and not always at the patient in front of them who simply reports feelings of not being quite right etc. But we know our bodies and our minds and as long as we can separate the two, GP's should listen. Regards B12, I was advised that over 300 was normal, 200-300 was low and below 200 was deficient. I only found out my score of 148 when I asked for a routine blood test in the good old days of a Dr ticking the boxes on a form, so I added my own ticks outside of the surgery for B12 and Iron. As if by magic, the diagnosis was confirmed the the GP took the credit. The fact that he hadnt made a correlation between my lethargy and possible B12 deficiency told me all I needed to know. Going forward I now ALWAYS take the position of being informed and engaging when I visit the GP. I wont be a patient that accepts their diagnosis just because they wear a white coat (well, they used to!! but so did ice cream salesmen!!). I am not troublesome or argumentative but informed and engaging, as again, I know my body. A current example is that after 30 months on various doses of Amlodipine and Ramipril and being on and off medication for BP, I kept records of dosage and side effects and was able to show that when Amlodipine was 7.5mg and above, palpitations and fast heart rate was common and uncomfortable. I insisted on a cardiologist appt who saw my data and agreed there may be a causal link so we have swapped to Losartan and guess what, palp/HR issues have gone. I felt like I did the GP's job for him by finding this causal link which was easy to spot from all the times I had returned to his practice with palp/HR issues, and I told him so at our last BP review. I also advised looking and listening to me and not his PC would be best for us both. I am now hoping that when I do go to future GP appts he will remember that I am not a "lemming-like" patient and that he had better be on his game. I now get B12 every 3 months without any issue from GP and my cardiologist review came through in just a few weeks.
So my advice remains, keep a small journal and symptom log, add in your concerns and possible options and engage positively, but a little firmly. The GP may just appreciate the help in finding the source of your issue. Return time and again until you are satisfied or ask for a referral to a specialist if required. Be informed about B12/Folic Acid /Fe etc so you can take the conversation with the GP and once he knows you are well versed, the consult should take a more informed direction.
I agree to stay well informed.However my symptoms came on gradually.
Despite a few visits yo thd Gp after 7 years absence I still was in hindsight fobbed of.
Do more exercise.
Do yoga
Stress/ lifestyle.
To cut a very long story short it took a collapse with stroke lihe symptoms to get sone bloods done and a brain CT scan then a brain MRI
BEFORE
My very first serum B12 test which was 106pg/ml (200-900).
5 doctors stil thought this was not low enough to cause such severe symptoms.
I was not able to think clearly. Too ill to ask for things . 5 weeks later as nothing else found to treat I was given 6 loading doses of b12 Injections.
I got alot worse with more new symtoms and they were nearly stopped on 3 occasions.
I found this forum .
Don't know how as never even been on Facebook.
Could hardly read as vision so bad and bedbound with migraines and vertigo.
I then armed with information had the fight for more treatment.
Eventually put back on EOD for 8 months after a quiet sit in at my surgery 5 weeks after last b12 injection .
It's frightening for how long your symptoms can be ignored .
Treated as a woman complaining of fatigue / falls they couldn't begin to imagine how bad id got and sheer will power to keep going .
I was shutting down.
The advice of more exercise was my un doing as had a terrible fall after swimming hitting my head hard on concrete to add to matters.
Why are we not listened to .
All I could cone up with was asking for iron to be checked with reluctantly was to shut me up.
Every symptom was there but ignored on 3 seperate occasions.
Being offered antidepressants.
I refused as wasn't depressed.
We can be our own advocates up to a point.
Then we rely on clinical presentation and a doctor to investigate .
B12 is not even on the tick list of' full bloods '
This sounds awful. Your B12 is lower than my test, which was 334, and I had lots of neurological symptoms. I've also had resistance from GP around recognition and treatment despite 2 consultants recommending this treatment. I've been self injecting every other day since 22/12. I felt that I had no other choice but to do this. I have a meeting with the patient experience manager at my GP practice next Wednesday to discuss this resistance and the impact it has had on me. I wish you well!!
So sorry you are feeling so exhausted. I was wiped out for years before finally discovering I had PA - by the time they bothered to check my B12 it was virtually nonexistent 😡Don’t be fobbed off, especially as your mum had it - that in itself ought to prompt the doctor to request antibody tests. We should have sufficient B12 stores in our bodies to last several years - by the time levels dip, neurological damage can have already kicked in. My daughter has just been tested for antibodies - came back with positive anti-parietal cells but not IF - and as her B12 was considered within normal range she has only been offered a folate supplement. She is going to see someone privately - so frustrating that the GP doesn’t seem to recognise what is going on! 🤷♀️
Do persist - hope you get to see the haematologist and that they are more clued up! 🙏😊
thank you. So far I have a repeat blood test next week where he wants to recheck levels and do the IF test. Not sure if that means antibodies too. Maybe I could ask for that to be included? He is quite certain I don’t have a b12 deficiency so I will just keep on keeping on. I’ve also craftily pre booked a telephone chat next week and an in person chat the week after.
They won’t get rid of me as I feel so bad and can’t look after my kids properly. It annoys me really that they go home living their lives normally whilst patients are left misunderstood and unable to live fully. My husband’s job is affected as he is having to help with many tasks I used to do and taking time out of work so I can sleep!! I worry a bit now going out as I feel dizzy more and more my head also has pins and needles which comes and goes every day now! It’s crazy and the doctor just sits in the chair chortling ‘oh no you don’t have a b12 deficiency’.
I also have a referral to a haematologist not sure how long that will take. I feel dizzy a lot now and just so tired.
Ah well. This group has helped so much already. Thank you.
Let me greatly applaud and commend you of taking care of 4 children during all this!!! Hugs to you! I could barely take care of myself when I discovered my B12 was 158. It actually helped me to read a woman’s account that she felt worse before she started to feel better. That gave me hope. It’s all so utterly confusing and symptoms all over the place! I have my husband give me my injections. Trial and error for 9 months and now I’m back to having a life (though I still am wary and monitor for set backs). Worst thing I’ve ever experienced. Hang in there and keep reading these posts for support. Praying for you.
248 is low. 500+ is healthy. The problem is they won't treat you unless you are deficient, below 200 or even 150 now, which is often way, way too late. Personally speaking, after the experience I've had, just take control of the situation yourself. Get your own supplies. The battle isn't worth is when you re low. Damage is being done without it.
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