Having been told I have Pernicious Anaemia a few months ago by my dermatologist and GP, Ive been taking b12 supplements + folic and recently vitamin D as well, I have jessners so I don't get very much sunlight and I really don't have the energy to do much outside anyway. My 18 year old daughters GP rang yesterday to say her b12 is low too 
I am worried that her doctor will assume it is her diet to blame when she hears mines is low as well, what can I tell her to say tomorrow at her appointment to ensure she gets the correct treatment? Thanks, Tina.
Here we go again. Help for my Daughter. - Pernicious Anaemi...
Here we go again. Help for my Daughter.
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tee8077
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FoggymeAdministrator
Sorry tee8077...have to be really quick, so...tell her to say that you have PA. it is most often caused by autoimmune disease and does tend to run in families. Your low B12 is a direct result of having PA (not diet) and hers is more than likely to be the same.
Get her to think about and list her symptoms before she goes. Most importantly, does she have neurological symptoms. If she does she will need six loading doses of B12 (one every other day) and then every other day injections until there is no further improvement. This is really important in order to prevent potentially irreversible neurological damage.
She may struggle to get every other day jabs once the loading doses have finished - if she does, come back her and people will be able to help you.
If she does not have neurological symptoms, she will have the loading doses and then most likely be put on one injection every three months. For some people this is enough to make them well and allow them to recover, but some still feel unwell and need more B12. Her GP may not want to give her more so again, if this happens pop back and someone will always help you.
B12 should not simply be stopped on a wait and see basis once the loading doses have finished - some GPs tend to do this. Again, pop back for help with this, if needed.
She can ask her GP to test her for intrinsic factor antibodies and parietal antibody cells (though these can give inaccurate results in 50% of cases). This may or may now confirm a PA diagnosis. Be aware that if the tests are negative, she could still have PA.
Get her blood results, together with the reference range, so you have a starting point and you can actually see what the result is within the range.
She could also ask the GP to test vitamin, mineral and iron levels - these often sit at the bottom of the range for people with B12 deficiency. This is not good enough and can inhibit the absorption of B12 and also make her feel very ill indeed.
She should also get a copy of these results - GP's often say results are 'normal' when they are not (perhaps you have found this out yourself, already).
She could also join the PAS -- it will help her to research and understand B12 deficiency and help her to learn how to deal with the medics (who may often be ill informed and sometimes even hostile). Also really good supportive space where she could 'vent' and ask anything that occurs to her.
Sorry but I really have to dash now...probably missed stuff I could usefully have said but sure others will offer more advice.
Best of luck and let us know how it goes.
Thank you very much Foggy for taking the time to reply, I have let my daughter read your reply and she is doing some more reading too. We don't believe it is a dietary problem as for the past 5 years she has spent time in and out of my house, lived with her father for a chunk of that and also we both lived with my ex for a while so our diet has been varied. You are correct in saying we have experience of doctors being ill informed, I don't want her to get into the same rut I am in with this, I've been taking supplements for quite a while after being told initially I would be having injections for the rest of my life, there is no improvement, granted I have other health issues. I have plucked up the courage to ask "I thought I was to get injections for this?" to be to told every time "Oh, umm, yes, some people do eventually need injections" but not me for whatever reason :(.. My best friend was diagnosed a few years ago with PA in a neighbouring town and is been treated the correct way. It seems to all boil down to luck. We are quite frightened of the outcome of the appointment tomorrow since having just turned 18 this month she needs to be able to get out of her bed and find work. I'll be back tomorrow to let you know, thank you again. Tina & Toni.
Hello both. So sorry that you've been having a rough time with this.
For you (Tina, I assume), you should be getting injections. Tablets do not work for someone with PA. But I expect you know that. Tou're probably going to have to start doing battle with your doctor to get the treatment that is you right to not only make you feel well, but also to enable your body to repair. High levels of B12 are required for that and you'll never get enough B12 from tablets.
I'm impressed that Toni (again, I assume) is doing some reading. What a good start. Well done you 😀.
If you want more information, as a start, you can click on my username and go to my profile page. The first post I ever wrote, at the bottom of the page, contains lots of wonderful information, evidence, and advice that was sent to me by others when I first joined. Look, in particular, for guidelines from BNF, NEQUAS and NICE. Fbirder has produced a very good summary document (Frank Hollis) which summarises all relevant guidelines. Extremely useful.
Here's a link to a clinical review on B12 Deficieny Treatment, printed in the British Medical Journal (BMJ). You could print it out and take it with you tomorrow. They can't argue with that (if you can get them to read it)!
htpp://mimic.org/pdf2014/function (links from my iPad don't always work so you might have to copy and paste to the search box. Failing that someone has also given it I one of today's other posts -can't remember which.
Finally, people here are brilliant at giving advice on how to get the proper treatment from your GP. Any one success is a success for us all! But it's a long hard slog.
So...keep logging on and asking questions...we're all in the same boat!
Will look forward to hearing how it goes tomorrow. Good luck xx
Thanks so much, I have learned so much from this forum already by reading all of your posts, thank goodness or else folk might think they're going nuts! It's extremely frustrating having a best friend who is being treated for the same thing but in the correct way, it makes me feel stupid and I suspect people think that I am over reacting, it doesn't help that I have another health problem that is pretty rare (Jessners), like in a lupus sufferer I have to be careful and keep covered in day light or I'll get quite sick, nobody believes I am ill now unless I have a horrible rash to show them. I am probably pretty far down the road where as neurological symptoms are concerned and quite obviously don't want my daughter to go anywhere near there! she is 18 years old and should be running around crazy learning about the world, not stuck in her bedroom with the curtains drawn!
Here is the latest BMJ research document Foggyme mentioned with info on page 4 under 'Parental Treatment:
cmim.org/pdf2014/funcion.ph...
" the expert consensus for standard treatment in the United Kingdom is to begin parenteral treatment with intramuscular hydroxocobalamin. This bypasses the possibility of the debate about whether the treatment will be adequately taken, absorbed, and metabolised. Standard initial treatment for patients without neurological involvement is 1000 μg intramuscularly three times a week for two weeks. If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.4 25 In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. "
Best wishes for better treatment, tee8077
As far as i can remember, there is a significant risk to other family members who are lilely to suffer if one does. There have been quite a few posts where more than one family member has b12d or PA.
Does she eat meat, fish, eggs? If so, it's not her diet.
The recommended daily allowance is 2.5 ug a day. That amount of B13 can be found in:
4 g of liver
50 g of beef
15 g of salmon
75 g of cheese
Thanks Fbirder, she doesn't eat very much red meat or fish besides tuna, it's all chicken, salad, and dairy, lots and lots of cheese, milk, eggs etc, she also takes a fish oil supplement and has done for a while as she has eczema.
Half a can of tuna will have a day's worth. As will half a litre of skimmed milk or 7 eggs of 750 g of chicken.
I don't think the fish oil will have much B12 as it's a water soluble vitamin.
It's good to have it laid out in front of you like that, thanks! why don't the doctors advise us to look at our diets first? Her latest gp seems to know what she is doing, the others she has seen have treated her for depression without looking at a drop of blood.
Please don't forget the importance of the Folate (B9) levels as this works with the B12,
Dark green vegetables like broccoli and spinach and dried legumes such as chickpeas, beans and lentils are naturally good sources of folate.
Ty Clive, I am glad you brought this up, I will make sure she has it on the list of questions to ask, I've told her to go into her bag and get her notebook out and let the doctor know she has been doing her homework. She will ask for a copy of her results regardless so that she has something to compare with later on. I am always forgetting about sneaky folate! mines was normal last time and I was told to stop taking it.
I'm not a medically qualified person but have been taking 1 – Folic Acid 400μg every day for more years than I can remember having been diagnosed with P.A. in 1972.
My last test result back in March was:
Serum Folate (SZ1706)Normal no action18.2ng/ml3.10 – 20.50ng/ml
And I eat my "greens" 
We do eat all the greens in my house too, I eat red meat but my daughter doesn't, we thought we had this covered so it's quite annoying to say the least. Hopefully she will come back with some written results later today. I had never thought to ask until my last set of results which were mumbled to me by a receptionist so pretty vague. b12 192, folic 91. I was more concerned about having lupus and didn't think to ask or have not been well enough to think straight.
I know you say "my daughter doesn't," eat red meat but here's a list of the
Top 10 Vitamin B12 Foods
1) Beef liver
3 oz: 18 mcg (over 100% DV)
2) Sardines
3 oz: 7.6 mcg (over 100% DV)
3) Beef (grass-fed)
3 oz: 1.5 mcg (25% DV)
4) Tuna
3 oz: 2.5 mcg (41% DV)
5) Raw cheese
1.5 oz: 1.5 mcg (25% DV)
6) Cottage cheese
1 cup: 1.4 mcg (23% DV)
7) Lamb
3 oz: 2.07 mcg (35% DV)
8) Raw Milk
1 cup: 1.1 mcg (18% DV)
9) Eggs
1 large: 0.44 mcg (7% DV)
10) Salmon
3 oz: 1.1 mcg (18% DV)
I read somewhere that caviar is extremely high in B12
Also if you don't wash your vegetable too thoroughly there is B12 in the soil - although you don't want to know where that comes from....
Then - there's always Marmite .......
I read that unwashed veg is better!, because I know I am deficient I tend to seek out appropriate foods for us and try to be sensible about our diet as well as taking the tablets the doctor prescribed It's unfortunate that individuals are treated according to blood test results and not the symptoms they present with, maybe somewhere in the future, fingers crossed!
Hi,
Your daughter might find it helpful to read the following books before speaking to her GP.
1) "Could it Be B12" by Sally Pacholok and JJ. Stuart
2)"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of the PAS and has written several books about PA and B12 Deficiency. his latest listed above is up to date with current UK guidelines.
Are you both members of the PAS?
Membership costs are changing soon. The PAS can sometimes intervene on behalf of members. Martyn Hooper's blog has stories about how PAS has helped some members try to get adequate treatment.
pernicious-anaemia-society....
PAS tel no 01656 769 717
Other UK B12 websites
B12 Deficiency Symptoms
I gave my GPs a copy of Martyn Hooper's book and the PAS Symptoms Checklist with all my symptoms ticked.
b12deficiency.info/signs-an...
b12deficiency.info/what-to-...
pernicious-anaemia-society....
Before tackiling my GPs, I read the following
1)ukneqas-haematinics.org.uk/...
2)bmj.com/content/349/bmj.g5226
3) BCSH Cobalamin and Folate Guidelines.
I gave a copy of the whole BCSH Cobalamin guidelines to my GPs. I found page 8 (details of UK b12 treatment) and page 29 (diagnosis flowchart) particularly useful.
I learnt from experience to always get copies of all my blood tests as sometimes what I was told was normal was not normal when I saw the copies. In relation to B12 issues I concentrate on b12, folate , ferritin and full blood count(FBC).
b12deficiency.info/b12-test...
patient.info/doctor/pernici...
Link about writing to GPs if unhappy with treatment
b12deficiency.info/b12-writ...
Thank you very much for all of this information Sleepybunny. We are not members yet, will have to think more constructively about it now that we are two. I have experienced not being told my results, the first time I asked for mines over the phone the receptionist mumbled and muttered parts of the results and said "doctor who read them says everything looks normal" when they were far from normal. It is taking us time to read all of this info, we keep falling asleep lol.
Hi,
Sadly once someone has been diagnosed with one auto-immune disease it increases their chances of developing another auto-immune condition.
There are quite a few people on this forum who have thyroid problems, some with coeliac disease and some with other conditions. Coeliac disease can affect the gut so can then lead to deficiencies in some nutrients eg B12.
coeliac.org.uk/coeliac-dise...
like with the IFA test and PA, the test for Coeliac antibodies is not always reliable and it can be possible to have Coeliac disease with a negative test for Coeliac antibodies.
As you have a lupus type condition, i wondered if you had been tested for Hughes Syndrome aka APS (antiphospholipid syndrome)..see links.
hughes-syndrome.org/about-h...
londonlupuscentre.co.uk/hug...
nhs.uk/Conditions/Hughes-sy...
I am not a medic just a person who has struggled to get a diagnosis.
A few extra B12 links
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
See important info in Management section of above link.
I have not been tested for Hughes syndrome but I have had a look at it and many other things, a person might go around the twist trying to figure it out, it really is soul destroying. My ANA test was negative so no lupus diagnosis for me although PA and lupus go hand in hand along with Reynauds and Sjorgeons and of course many other things, I have lots of pics now of my visual symptoms but no diagnosis for anything yet besides the Jessners. Waiting for MRI and appointments with haematologist and neurologist.
My Daughters appointment is at 4 O'clock, it will be interesting to see how she goes about treating this, it's awful, I don't know whether I am coming or going, worrying about the future all the time, worrying about the damage delaying adequate treatment is having on our health. The good thing is that If I hadn't found this site I wouldn't have realised my daughter was showing all of the signs of PA so thank you all so much for that! I'll be back in a few hours with the outcome of her appointment. Fingers crossed! Tina.
Just back from Dr appointment, my daughter was prescribed 50mg of Cyanocobalamin twice a day plus folate 5mg once a day, she is having her bloods checked on Friday then in 3 weeks time rechecked. We didn't get around to asking for the past results because the doctor asked if there is a history of b12 deficiency I of course told her mines is also low and slipped in that I had done my homework, she instantly straightened up in her chair and started speaking in a louder voice, speaking over the top of me, and sniggering at us when I spoke of having read up on guidelines etc. So, we have another doctor who thinks she knows more than the whole of the internet.
Oh dear tee8077. So sorry you had such a bad experience with your doctor.
What on earth makes these medics think that they can behave in such a way to patients! Bullying of the highest order.
Unfortunately, I'm not surprised!
Given your history, did she at least offer to test your daughter for PA?
She should know that if your daughter has PA, then B12 in tablet form will not work since the lack of intrinsic factor will mean that she is unable to process B12 through her stomach and interstines.
And testing following supplementation is not only a useless activity but explicitly advised against in the guidelines (unless checking for a LOW B12). Higher levels will simply show that supplementation has taken place! Your GP should know (but probably won't) that she should be treating SYMPTOMS and not blood results.
However, if your daughter's levels have NOT increased, you will at least be able to argue for B12 injections (and demand Testing for PA).
Can't remember if you said your daughter has neurological symptoms, but if she does its is imperative that treatment with B12 injections starts immediately in order to prevent potentially irreversible neurological damage.
Is there another GP in the practise you can see? Or is it possible to change GP surgeries.
It would help if you could get a copy of her previous results and post them here so people can comment (perhaps the receptionist would print them out for you)?
Please let us know how you get on...if you do a new post I'm sure people will want to offer whatever support they can.
Take very good care both xx
Hi,
I'd suggest contacting the PAS soon. Link and tel no in one of my replies above.
If you are members they can sometimes intervene....see links to stories on Martyn hooper's blog.
martynhooper.com/2016/04/30...
martynhooper.com/2016/04/24...
martynhooper.com/2015/02/10...
Untreated or inadequately treated PA and B12 deficiency can lead to permanent neurological damage.
In the past I have sometimes written very polite letters when unhappy with treatment listing evidence/reasons. My understanding is that letters have to be filed within medical notes so are a record of concerns raised. Be warned that sometimes being assertive can upset GPs.
Other ways to raise concerns (i've assumed you are in England) could include
1) Contacting practice manager
2)NHS England
england.nhs.uk/contact-us/c...
3) CCGs (Clinical Commisioning Groups)
nhs.uk/servicedirectories/p...
Has your daughter's GP read the BCSH Cobalamin and Folate Guidelines?
Has your daughter had an IFA test?
page 8 in the BCSH Cobalamin Guidelines makes it clear that patients with low b12 without anaemia whose deficiency is not due to diet or food absorption problems should have an IFA (intrinsic factor Antibody) test.
page 29 in the BCSH Cobalamin Guidelines is a diagnosis and treatment flowchart that shows the recommended process GPs should follow when they have a patient with B12 deficiency.
I gave a copy of the whole BCSH Cobalamin document to my GPs.
fbirder has a useful summary of mainly UK B12 documents which I plan to give to my Gp at next appt. If you search his posts you should find a link to summary.
Local area B12 Guidelines
I found out that some areas of the UK have local management guidelines for B12 deficiency. Some of these local NHS area guidelines have not been updated since the BCSH Cobalamin and Folate Guidelines came out in 2014.
Some GPs may be following local guidelines rather than the BCSH Cobalamin guidelines. the local NHS B12 deficiency guidelines might be found by an internet search, a search on local NHS website or a FOI (Freedom Of Information) request to local NHS website. MPs can also be useful in finding out information.
Does your daughter have neurological symptoms?
See Symptoms lists in one of my replies above. My understanding is that those with B12 deficiency with neuro symptoms ,whatever the cause, should have extended loading doses for as long as symptoms continue to get better then injections every 2 months.
See Management section in next link for treatment info based on BNF (British National formulary)
patient.info/doctor/pernici...
"We didn't get around to asking for the past results "
It might be helpful to get results when you have time. It's possible to request copies of results in a letter. There may be a charge for making copies. You might be in an area where results can be accessed online...your surgery should be able to tell you. My personal opinion is that it can be useful to build up a picture of results over a period of years for ferritin, folate, b12 and full blood count (FBC).
FBC
There can be useful clues on the FBC. I look particularly at MCV and MCH. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells). Low iron can lead to microcytic(small) red blood cells and low MCV. Low B12 and/or low folate can lead to macrocytic (enlarged) red blood cells and high MCV. A person who has both low iron and low B12 and/or low folate may have a normal range MCV. A blood smear aka blood film test may show both macocytic and microcytic cells in someone with low iron and low B12.
patient.info/doctor/periphe...
labtestsonline.org.uk/under...
medical records
Some people on this forum get a complete set of their medical notes. i think this would cost at least £50 maybe more. People have found out that they were diagnosed with PA in past but never told.
Thank you both for your encouragement and for taking the time to offer such valuable information! the doctor asked for bloods, kinda "before and after" and they will test for PA I was able to ask "isn't that a bit pointless" but instincts told me I was fighting a losing battle and got pushed into a corner. It's like, what you gonna do? prescribe her a steak? ..I've went untreated for a long time so I know the effects it can have on a person, In my heart I know that if I wasnt neglected by my doctor (I am taking b12 supplements since 2014) my mental health would be on par and I would be able to deal with these situations a lot more effectively. Although my daughter is not showing advanced symptoms of this I understand fully why, when people who know what they're talking about, tell us to be quick, get treatment as fast as you can. They seem to have an issue with commitment to this treatment she kept emphasising "this will be FOR LIFE!" making me feel like I was doing something wrong trying to help my daughter feel better, and insinuation there will be no turning back after that first prick of the needle...like I was risking my daughters life or something. It's strange and probably Narcissistic. Sorry for bitter rant. Tina
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