I had to have a re-blood test done a couple of days ago since having my b12 loading doses in Nov/Dec 2022 when I was told that I have Pernacious Aneamia caused by B12 deficiency & given a sheet of paper telling me all about it etc...
I was told my results today & they say everything is normal apart from my Iron is very low, so I need to eat some Iron Rich foods.
I was told that my B12 levels are now normal.
I'm slightly confused as I thought I'd be on b12 injections for life now since my first diagnosis 🤔
I've added a small list of my blood results below, please can someone help me shed some light on what I should be doing apart from eating iron rich foods now, as I've read that once being started on b12 I shouldn't stop being given the injections.
The results on 15/03/2023 were..
Serum ferritin 24ug/L...
( Normal range 23-300 )
B12.. 557.
(normal 187-883)
Serum folate 3.3ug/L
( Normal range 3.1 - 20.5 )
The results I had previously in Nov 2022 were as follows...
Serum ferritin 31ug/L
Normal range 23-300
Serum folate 3.9ug/L
( Normal range 3.1- 20.5 )
Im just confused as the ferritin & folate have dropped down even more since my last blood test that I had taken last year & yet they didn't say anything about supplements I should be taking, just food I should be eating! 🤷
What should I do regarding my previous B12 deficiency, should I just wait & see if my symptoms return or get worse again? 😕
P.S
I'm not a vegetarian or a Vegan
& I mean absolutely no offence to anybody who is! 😊
Written by
Electricblue22
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Patients with Pernicious Anaemia shoujd be on B12 injections FOR LIFE . There is no cure for the condition . The injections shoujd be as often as is needed to keep the symptoms at bay .
I’m afraid that P.A. patients often have trouble with treatment due crass ignorance
P.A. patients have no / low stomach acid ( Achlorhydria/ Hypochlorhydria ) due to the destruction of their parietal cells which are destroyed by the Intrinsic Factor Antibodies they produce . This can result in poor absorption of other vitamins and minerals . .
You must take action to have your injections restored. . Write a letter to your surgery to this affect . The NHS guidelines should be followed . I hope that other forum members will help you in this . Best wishes . I feel for you and hope that you will get better treatment . With that , you can lead a perfectly normal healthy life .
Thank you for your reply, I won't let this rest don't worry , I will be writing a letter to my surgery & I'll also make an appointment to discuss my results etc with my gp ASAP.
Also in addition to what wedgewood has said above you do need to ask your doctor about supplementing iron and folate as these two vitamins work together with B12 to make red blood cells,
Your blood results for b12 ate not very high considering you've had Injections!! Most on injections have levels of over 1000
Whole point of regular injections is to keep levels high as for a still unknown reason need to be on ' overflow 'to reach cell level if 'normal processing ' of b12 mechanism has broken.
It's well documented in their ( gps) guidelines b12 levels tested when on injections a waste of time and shoukd not be used to stop Injections.
Your levels of s few things are clearly dropping as will b12 again
The whole point is its an absorbtion problem.
I tried liver, offal. Very rich b12 / iron foods . .oral tablets sprays
I simply could not absorb enough .
All I did was raise my cholesterol level!!
I'm back on the good mixed diet I was on before.
Fresh veg homegrown.
Pulses
Diary
Eggs
Meat ( less now after early trial)
I'm not so good with fish but do have it .
Cholesterol level back to where it was!!
I personally need regular b12 injections
An iron supplement as a maintenence by blood results.
( never needed before )
Folate you may be able to get from food ??
But a multivit has at least 200mcg
If not 400mcg .
So safe now your b12 up.
Vitamin D important too.
For me the first thing that dropped .
21 ( 80 + above
A good diet essential.
But at 50+ in age often need supplements often needed even without PA .
The PAS telephone helpline is not operating for some reason at present.
Loats of info on the website .
Also look at all the links from Sleepybunny.
Tracy witty
And the sound advice from wedgewood abd clivealive
I would act now.
How are you actually feeling. ?
Did symptoms resolve ?
Are they creeping back?
It's a problem with gps we are all facing or continually having to do so.
They put us on b12 injections 💉for very good reasons our bodies need them continued
I've had many 'rounds' on behalf of myself ,mother and daughter .
My last telephone consult I'd booked to discuss blood results ( b12 not tested)
Iron as wasn't sure what results meant. Guidance needed for lowering or highing dose.
A non event . ( I won't go into)
Then when I went to request my repeat b12 prescription this Gp ( never met) had cancelled my b12 prescription.
Not a word on the phone or Informed.
A prescription shoukd nevef just be stopped without a consultation or valid reason.
I despair.
I got the iron and b12 on prescription.
Iron so it woukd ensure regular blood tests
Action when in crisis/ very low leveks treatment just gives a constant see saw effect . Also making you very ill !
I wouid send a letter into the practice .
Get advice from here.
Book a face to face.
Go with someone.
List your 5 worst symptoms
I assume theve ruled out other reasons.
As you've s confirmed diagnosis of PA keep that on paper.
I was handed info on a leaflet at the start too.
Assumed PA and treated .
Still no firm reason.
Just agreed treatment as nothing else to date found and on no other meds.
I agree with nakapan in that I would expect your B12 to be at least 1500 with having had loading doses. Also, they should not be running B12 or IFAB tests after you start injections.
If you had a positive IFAB intrinsic factor test BEFORE your loading doses started, than you have PA and you need injections for life. They shouldn't be running any of these tests after giving you B12 injections. Because once you've started on B12 your blood test results will no longer be accurate. Your B12 after injection should be up in the 1500 to 2000 level. The fact that after injections, it's only 500, seems to say that you definitely are not absorbing B12.
It is important for your medical records to be correct for future doctors and treatments. Also, I didn't read everybody else's remarks, but low folate can mask a B12 deficiency so I think if I'm not mistaken that you shouldn't treat folate deficiency until you've addressed a B12 deficiency.
Perhaps you need another opinion from another doctor? The only problem is that they shouldn't even be testing you for any of this stuff now that you have manually injected B12 into your system. That's going to muddy all the waters and all the tests. You would have to go months without B12 to get it out of your system before you could be tested again and have it be as accurate as possible. So if your first tests were done without any B12 in your system then that's what you should be going by. You're very first test that were done without B12 in your system. If those said that you have pernicious anemia, then that's what you have. And your doctors should not test your B12 levels anymore and they should accept that you have pernicious anemia and they should be giving you monthly injections if not more. For life.
Good luck to you. I don't know why doctors make this so difficult. It's really very simple. But they refuse to educate themselves or to accept what we are all trying to tell them.
Thanks again Nackapan for your advice. I had a feeling that they would be stopping my b12 injections because of what I've read recently about NHS cut backs on other forums, so I wasn't at all surprised to be honest! Yes I've noticed my symtoms are slowly creeping back again which isn't good 😕
I've also just found out that my mum is having to start b12 injections too. She has suffered for years from lots of debilitating ailments including 2 heart attacks at 52, followed by Diabetes, Chronic lower back spine deterioration (which was operated on)
deafness,
confusion,
chronic tendernitis (operated on & no better)
unsteady gait,
extreme tiredness, which we thought was caused by all the medication she is already on including morphine patches for her extreme pain etc
The list goes on bless her ... 😔
So after receiving my own diagnosis Iast year & reading about all the symtoms & then finding out that it could also be heriditary I advised her that she should get her b12 levels checked as well.
Her practice finally done them & they've come back low, now she's waiting for dates for her loading doses.
I just hope her b12 treatment will help her now because she has been left so long undiagnosed 🙁
I will be making another appointment with my Gp to discuss my results etc ASAP. I am determined to not follow in my poor mums footsteps bless her heart.
If I'd of known about this awful condition before I'm sure my mum would be in far better health than she is right now.
Makes me so angry that she hadn't been checked before now!
Hi again Nackapan, just to let you know that my mum's b12 level was only 107 😳 The doc said he wants to get her up to 197 what a bloody joke!
I'm furious!
She's started her loading dose on Friday, I just hope to god it helps! I'm worried now the damage it's already done being insufficient in b12 for so long! 😕
Gosh I'm so sorry for your mom. If your mom has a B12 deficiency and you have a B12 deficiency, it makes your case even stronger that you have pernicious anemia, because it would seem that it is hereditary in your case. They shouldn't be denying your B12 deficiency knowing that your mother has the same problem. Does anybody else in your family have these problems! If you think back generations? If people in your family have died of stomach cancer or other issues pertaining to B12 deficiency that would be a strong indicator that it runs in your family which means they shouldn't even do any more testing on you they should just be giving you your B12 no questions asked anymore. I think it's really silly what they're doing to you and I'm really sorry for you and your mom. I sure hope it helps her. I don't know how long this has been going on for you guys but I'm almost a year in and I'm feeling a lot better but still not where I'd like to be and don't know if I could ever get there, but if time is an indicator it's going to take quite a while for her severe symptoms to get better. And to what extent they're going to improve is unknown. But I sure hope that her symptoms improve a lot. It sounds like with her spine and brain issues, that she might have subacute combined a generation. But that's just an uneducated guess. Anyway good luck to you and your mom.🦋
Thank you very much for your reply & kind words, they are very much appreciated 🥰 I'm also glad to hear that you are feeling better than you were. I wish you goodluck also 🍀
Your GP is using the term 'pernicious anaemia' to refer to the macrocytic anaemia caused by B12 deficiency. On this forum Pernicious Anaemia is being used to refer to an auto-immune condition that attacks the mechanism in the terminal ileum that is used for B12 absorption from food. So, your GP is talking about something different.
There are tests for PA as a specific cause of B12 deficiency but the one most generally used isn't very sensitive which makes it difficult to interpret/easy to misinterpret.
Suggest you ask your GP what they think caused your B12 deficiency in the first place - and the fact that you now have iron deficiency would point to it being something like PA (in the auto-immune sense). This would mean injections for life. Unfortunately serum B12 is very difficult to interpret posta loading dose - post injection the levels are off the scale and then they fall over time but how long that takes varies from person to person. Active B12 may be a little more useful but even that can be problematic as high B12 levels seem to be one of the events that can impact on the processes that transfer B12 from blood to cell in some patients with the result that serum B12 levels at which a patient feels well can be quite different post injections.
Welcome! At least you have started on the route to getting fixed. PA is for life, and therefore IF you have PA [it's not certain unless more tests are done] then after the loading doses, you need regular maintenance doses too. A well balanced diet ought to provide you with sufficient nutrients to avoid you running out of anything. Clearly it sounds like you'd not been able to absorb sufficient Vitamin B12 to do this, hence the injections. A discussion with your GP about current and future treatment is definitely called for. We are here for you to back you up with ideas if required. Don't take 'no' for an answer, but keep it friendly!
Some good advice already here all of which I support.
Your folate and iron are low and reducing which shows the B12 is drawing on these to make healthy blood and repair your body. So these should be supplemented to ensure they are sufficiently high for the B12 to work otherwise having B12 is a waste of time. I would also check your Vitamin D level as this can also be low
Keep a journal of treatment, symptoms activity etc for you and your mum as this is your only ammunition to get treatment if you have a GP who is not up to speed on PA which is the majority sadly.
If you can afford it try to get a consultation with a PA specialist - I use one in Cambridge - and my GP follows his advice probably for an easy life!
I have to buy my own B12 and needles etc because the NHSwont provide them for me despite what the NICE guidelines say. This could change in time and become more symptom responsive which is why we all need to have our journals ready. But I get high dose folate and Vitamin D on prescription.
My mother and daughter have both subsequently been checked and it looks like my daughter is low in B12 too. She’s on B12 patches for 6 months and if no improvement then it will be injections. So glad you have been able to help your mum too. I am sure you will both be feeling much better soon.
Thank you so much for your reply, advice & kind words, all of which are very much appreciated 🥰I will definitely be contacting my GP to ask what happens now regarding my b12 injections & if I have no luck then I will look into seeking other methods of help & Cambridge sounds like a very good idea!
Hi, I can see you've had lots of helpful advice already re the ongoing B12 injections, so I won't add to that. But on the low iron, I also had that and was told to start taking a supplement. I tried for months but have never managed to find one that didn't massively disagree with my digestive system, so I'm now trying to manage through diet but I have started taking a vitamin C supplement daily, as this should help iron absorbtion. It had increased marginally when I was retested in December, so hopefully it's enough to get me through. Hope that helps!
You really need to look after it, in any way you can. My sister had the same thing. You're low, shots. Oh you're normal, no shots. Rinse & repeat. This went on for years. Her doctor just assumed it was like that, like other vitamins - our of range - oh normal - all done.
Her new doctor thinks the same thing. And yet was mortified that I have been giving her her monthly shot (Canada - cyanocobalamin). Whatever. Cut her off during Covid and that is what happens.
Get to it as some days I wonder if my sister has issues that will not improve for her because that went on for so long.
I went rogue right after loading shots & happy I did.
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