I am new here. I am a 27yr old female in the UK. Recently, I went to my GP with what I thought were Hypothyroid symptoms on my Mother's advice since she has this condition.
I was shocked to learn that my thyroid was fine (given a family history of thyroid problems) but found that I had a B12 deficiency:
Serum Vit B12 level : 88ng/L (130-800)
Serum folate level: 8.8ug/L (4-20)
Serum ferritin level: 49ug/L (12-250)
My calcium levels were also low and serum C reactive protein level was high. These were not mentioned to me - I only know this because I asked for a print out of my test results. I have had no medical advice on these.
Serum Calcium level 2.18mmol/L (2.2-2.6)
Serum C reactive protein level: 8mg/L (<7)
I should mention that I eat a lot of meat, cheese, marmite, fish, dairy etc. Beef and lamb is my favourite!
Now that I have had my 6 loading B12 injections and read about anemia, I was in a bad way - much worse than I realised at the time. My symptoms were: extreme tiredness, unable to sleep at night, fatigue, memory loss, headaches, an involuntary twitch in my face, anxiety, depression, vomiting, heart palpitations, mood swings, hair loss, dry skin on my hands, loss of hearing, unable to tolerate alcohol and often seeking isolation. I have also gained a bit of weight, constantly hot and would occasionally feel like I had something crawling on me. I had an excuse for everything and they crept up on me so gradually, i can't even remember when I started feeling this way.
My 6th injection was almost 1 week ago. My dry skin is clearing up, my face stopped twitching, I feel a bit sharper during the days and I'm having less hair loss now, but I just woke up from a 10 hour sleep and feel like I could do with another 10 hours.
I still don't feel 100% better, but I realise I need to give it time. During my final loading shot, the nurse told me that my gastric parietal cell antibody test came back as negative so it is not pernicious anemia and that I will only be allowed B12 injections for 2 years and then I will be left to 'see what happens' for a year or 2. This is quite upsetting since I don't want to go back to the way that I was before - it has actually increased my anxiety since finding this out. I was simply told to increase my intake of B12 rich foods.
Being told to eat more of this, is almost impractical since it's such a large portion of my diet anyway. Clearly I have some kind of absorption problem (if not PA) to have got as low as 88. The implication of eating these foods as a 'fix' suggests that I should have felt better every time I had a steak etc - but I didn't.
I really don't want to crumble again in 2 years. It’s scary enough not being able to remember simple things - I would hate for this to get any worse, particularly since it can be irreversible.
I would appreciate any advice. Any further tests I can ask for? Any interpretation of results?
Thanks in advance.
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TMur1990
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According to the N.I.C.E. Guidelines on the Treatment of B12/Folate Deficiency
"Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014]."
Pernicious Anaemia is only one cause of B12 deficiency. There are many other causes. Your nurse is quite correct in that meat and dairy are the sources for B12 but, as for the rest, clivealive has advised re testing.
There is a complicated process involved re absorption of B12 in the body so just eating lots of meat and dairy may not solve the issue. In fact, even taking oral B12 supplements do not always help either, for the same reason.
There are a number of medications that can cause lack of absorption of B12. In particular, Metformin and PIP/antacids can cause an absorption problem. As well as Metformin, I am also prescribed Ranitidine (to reduce stomach acid) and my GP clearly was unaware of this side effect! If you search for meds which can cause B12 deficiency, you may recognise a potential cause. I believe even contraception can cause B12 Deficiency!!! So, maybe a good thing to research.
I've not heard of stopping injections after 2 yrs, then a break for a year to re-assess. Unless you remove the cause, you will undoubtedly continue to need appropriate supplementation, ie injection.
Many of us on here self-inject because the doctors just will not recognise the need to treat or under-treat. Finding a knowledgeable medic seems to be so rare, unfortunately.
C reactive protein is a marker for inflammation - and you will be quite prone to infections being that B12 deficient.
GPCA and IFA coming back negative doesn't actually rule out PA as the cause of your absorption problems - nor does it mean that you shouldn't be on B12 injections for life.
You obviously don't have a dietary deficiency so that means you have an absorption problem of some sort. There are a few that are treatable - h pylori infection - but it doesn't sound as if you have been put on treatment for that or as if it has been identified as the cause.
Treatment for h pylori infection would be a course of anti-biotics and a period on PPIs to enable your gut to heal.
Can't really comment on the calcium - though an absorption problem is likely to affect your absorption of other vitamins and minerals. It would appear that the most common cause of calcium deficiency is dietary from some recent research in relation to a recent post asking about any links between low calcium and low B12.
Your B12 was very low. Would be surprised if you didn't have neurological invovlement in which case you should really have had a more aggressive treatment - loading shots 3xweekly until symptoms stop improving (review at 3 weeks), followed by maintenance doses every 2 months.
Your folate level is okay but it could drop as your body may be using more folate as it starts running process that need both B12 and folate that haven't been running for a while. You can get 400mcg supplements at the supermarket which should be sufficient to cover any additional need at the moment. The best source is from your diet though so if you don't have plenty of folate rich food in your diet would be worth upping the amounts.
About 40% of people with an auto-immune gastritis seem to go on to developing hashis/autoimmune thyroid problems so worth keeping an eye out for thyroid as well.
This is a link to the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies - would be worth reading and talking to your GP about bits that you think are relevant.
You don't have to worry. You can buy injections from good German pharmacies like mycare.de, it's impossible to overdose on it. I have been injecting everyday for 6 months.
Don't panic it costs about 80p a day. Or 80p a week depending how often you inject.
I was in a similar position, do not have pa just low b12 but had injections for a while. I now supplement with sublingual and prefer taking it this way as I think it keeps my levels consistent and I don't have a return of symptoms waiting for the next injection.
When you had the thyroid test, were you tested for TPO and TG antibodies? If you have high antibody levels you will have hypothyroid symptoms before your thyroid is sufficiently weakened to show up as dysfunctional in tsh/t4 thyroid tests.
"the nurse told me that my gastric parietal cell antibody test came back as negative so it is not pernicious anemia "
I am very surprised that you had a test for gastric parietal antibody for PA as it is not recommended in UK as a test for PA.
In the quote that clivealive included in his post it mentions that not all people with PA test positive for gastric parietal cell antibodies, so a negative result does not totally rule out PA.
See BSH Cobalamin and Folate Guidelines for more info.
In UK, Intrinsic Factor Antibody test is recommended as a test for PA although IFA test is not always reliable. I did wonder if nurse had confused the two tests, perhaps you could get a copy of the antibody test result.
It is still possible to have PA even if IFA test result comes back negative or normal range.
Flowchart below from BSH Cobalamin guidelines mentions Antibody Negative PA.
You mention eating plenty of meat, do you also eat dairy, eggs, fish, shellfish? If you're eating b12 rich food like this the chance of B12 deficiency being due to diet is less likely and it is more likely that low b12 is due to an absorption problem eg PA, Coeliac disease plus other possibilities.
Firstly, can I just say how flattered I am that you all took the time to reply to me Brilliant support!
CliveAlive, I do not believe I have been tested for Intrinsic Factor Antibodies. I was only told of the Anti-parietal cell antibody test. I will request a print out of my results and see if there were any other tests, but to the best of my knowledge there were not.
I have received no advice with regards to my folate level.
JMN2017, yes I am newly learning other factors that can lead to low absorption (I ordered the books that others had been recommended and am working my way through them now). The only offending medication I appear to be taking is Microgynon. I am considering moving to an alternative method just in case - although I am horrified that it did not come with this warning! Does anyone know if it only impedes the absorption while you are taking it?
Gambit62, Thank you for your comments. Sadly, I have not been offered any aggressive treatments or further consultations as you suggested - nor have I been offered a review. In fact, I have not even seen my GP since my initial blood tests came back. Unfortunately, I did not know much about B12 or PA then so I didn't know the right questions to ask. I am considering making an appointment to discuss this - like I said, I'm not even sure if they tested my IFA. Your link to the BCSH guidelines will prove very useful when I got back to the GP.
I did not receive any advice on folate levels, other than 'eat some leafy greens' which I already do. I can't see any harm in supplementing this anyway so I might just do that.
Evergreen11, I do not have any results for a D3 on my print out. I will suggest these tests to the GP when I go back there.
Toph, It's nice to know there is a suitable backup if all else fails!
Rufus11, I am unfamiliar with those medicines. My only regular medicine is microgynon.
Auntyp62, it's nice to know there are alternatives out there. I shall look into sublingual supplements.
Maggie0652, even though my request was to check my thyroid, the only thyroid related test I can see on my print out is:
Serum TSH level 2.00mu/L (0.35-5)
So since my thyroid is in the normal range, they considered that case closed. I will also mention these when I go back for a review.
Thank you all again for your comments and suggestions. I will put together some questions for my GP and request some further tests.
I was also wondering (this may or may not be relevant) has anyone ever had an eye test while they were B12 deficient? I had one early last year and the optician referred me to the GP for having 'tortuous vessels and bleeding plates'. I underwent a number of eye tests etc, but they never found anything. I am now wondering if that could have been connected to a B12 deficiency? Just a thought.
With regard to eye tests I remember being told by my doctor back in 1972 that when I had my injections of cyanocobamalin 1000mcg B12 every four weeks for the rest of my life (the standard procedure back then) that the nurse would "look into my eyes" (whether longingly or not I'm not too sure) but none of them never did - or have.
I was diagnosed with Type 2 diabetes in 2015 and sent for a "Retinography" test and it was found that I had some damage to my left eye. I don't know whether the damage was caused by my P.A. or the diabetes and when I asked the nurse at my next injection whether she should be "looking into my eyes" she said she's never been trained or told to do that.
Hopefully however perhaps the following extract from the website "Retina Today" will help:
Anemic Retinopathy: Case Reports and Disease Features
Iron deficiency is the most common type of anemia. A deficiency of vitamin B12 is known as pernicious anemia. In the eye, anemia can lead to transient retinal hemorrhages.
• As the severity of anemia increases, the risk of retinopathy increases, especially when platelet count is low.
• Ocular findings can be classified as features common to all anemias or specific features due to specific etiologies.
• In most cases, only treatment of the underlying etiology is needed, and retinopathy generally resolves on its own.
In my third and latest Retinography test the damage to my left eye has not changed and requires no immediate treatment and my (now) doctor says "not to worry".
I'm not a medically trained person but I hope this helps.
To have the full understanding of the Thyroid function - you need the FULL profile - TSH - FT4 - FT3 and the Anti-bodies TPO and Tg. Sadly the FT3 and BOTH anti-bodies are rarely tested under the NHS and so many people remain undiagnosed and very unwell. It is all about costs - but also because having LOW thyroid presents with lots of other symptoms that are treated individually with drugs that make big bucks for Big Pharma.
Am not a cynic just a realist having been on the Thyroid forum here on HU for six years
The above link takes you to a link to the main website of Thyroid UK and the companies offering Private Testing with finger prick testing in the Home. the only way to have the correct testing done - sadly ....
Hashimotos is the most common of thyroid conditions - so how can they say yours is fine when they have not even tested your anti-bodies - shame on them !
With regard to thyroid tests, unfortunately most doctors only test tsh and this is totally unsatisfactory. Tsh is a pituitary hormone and does not give a true picture of thyroid function.
You need, in addition to Tsh, total T4, free T4, free T3, TPO and TG antibodies. If your doctor refuses to test these you can get them done privately by Medichecks or Blue Horizon. Medichecks have special offers for thyroid tests on Thursdays. There is a link for Medichecks and Blue Horizon on the Thyroid UK website and you can post the results on HealthUnlocked, Thyroid UK for advice.
Thyroid tests need to be done early in the day, fasting from midnight the night before, with water only until after the test.
Do you have neurological symptoms eg tinnitus, tingling, pins and needles, memory issues, balance issues, involuntary movements plus others?
"Now that I have had my 6 loading B12 injections"
In UK, standard B12 treatment for B12 deficiency is 6 loading jabs over 2 weeks followed by a jab every 3 months.
For B12 deficiency with neuro symptoms, it's a loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.
Untreated or under treated B12 deficiency could lead to further deterioration including spinal problems and possibly permannet neurological damage.
UK charity that offers free second opinions on medical diagnoses and medical treatment.
PAS
In view of your very low B12 result, multiple symptoms and diet less likely as a cause, I'd suggest it's probably worth joining and talking to PAS (Pernicious Anaemia Society). Some articles on PAS website are only available to PAS members. PAS members can access details of local PAS support groups.
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Brilliant support!
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