Results support please: Hi, I'm a 45 yr... - Pernicious Anaemi...

Pernicious Anaemia Society

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Results support please

Lampy66 profile image
15 Replies

Hi, I'm a 45 yr old female and I went to the GP last week with a range of symptoms, including onset of pins and needles, limb weakness, tired, mouth sores. They ordered full bloods and I've got the results. The GP has only picked out low Vitamin D and advised me to start on a daily supplement and have bloods retested in 3-6 months.

However my research suggests my B12 is low as well - would that be correct? As my symptoms seem more in line with B12 issues than Vitamin D. I've ordered B12 spray and Vitamin B complex tablets but I'm also busy reading everything I can from links I've read on other posts to check I supplement correctly.

I'd just appreciate some extra eyes to look at my results:

Serum Vitamin B12 level - 310 ng/L (197 - 771)

Serum Ferritin level - 51 ug/L (13 - 150)

Serum Folate level - 7.5 ug/L (2.1 - 26.8)

Vitamin D level - 43.2 nmol/L (under 30 deficient, 30-50 insufficient, above 50 sufficient)

Many thanks in advance.

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Lampy66
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jade_s profile image
jade_s

Hi and welcome to the forum!

You're in the tricky land of "all labs are normal", at least what you've posted. Do you have any other labs to share? Red blood cell panel? CRP? Thyroid?

I'll try to interpret, but keep in mind I am not medically trained nor is anyone else here, we are all patients. I've put your comments in bold/italics and I'll start with the easy ones lol.

onset of pins and needles, limb weakness, tired, mouth sores.

Can very much be low B12 and low folate symptoms. But can also be due to other things like thyroid, iron, diabetic neuropathy, or other diseases. Here are two sites with comprehensive B12 deficiency (B12D) symptoms lists :

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Vitamin D level - 43.2 nmol/L (under 30 deficient, 30-50 insufficient, above 50 sufficient)

[edited to remove my comment that it's not too low. see my other reply below].

But yes I would follow doc's advice and retest in 3-6 months after supplmenting.

What dose are you on?

Serum Ferritin level - 51 ug/L (13 - 150)

This would be considered too low. Suggest you ask for a full iron panel that includes : serum iron, % saturation, and TIBC.

People can have low ferritin without having low iron, so you should never take iron without knowing actual iron levels. But if iron is also low, it may explain some symptoms, so I would get the labs first and then consider supplementing depending on levels.

Serum Vitamin B12 level - 310 ng/L (197 - 771)

Serum Folate level - 7.5 ug/L (2.1 - 26.8)

Neither would be considered low. BUT! There are people whose levels are low in range, like yours, but still develop symptoms of B12 deficiency. It may be classed as "functional B12D" in that serum levels are ok, but the b12 isn't getting into the cells. I was in that category myself.

In those cases, additional tests like homocysteine, MMA, as well as active B12 and the two antibodies: intrinsic factor (IF) antibodies and gastric parietal cell (GPC) AB, may well shed some light on the situation.

Important that you do not supplement anything with B12 in it - B12 tablets, B complex, multivitamin, energy drinks, until you get these tested. Otherwise all the results will be skewed and it can take another 4-6 months or more until levels falls back down, all the while suffering.

If all those tests come back normal, then in your shoes I might first try tablets / spray. If the supplements don't help, and everything else has been ruled out, then it's possible to self-treat with injections as a last resort.

Do you have any relatives with pernicious anemia (PA)? Any other autoimmune diseases? Both make it more likely that you might have PA.

What country are you in, please? Diagnostic/treatment guidelines and the availability of B12 are different across countries.

Lampy66 profile image
Lampy66 in reply tojade_s

Many thanks for your detailed comments, lots for me to consider esp. re. further testing. I'm in England.

Lampy66 profile image
Lampy66 in reply tojade_s

Just to add also to your questions I did have thyroid tested as well and results were:TSH - 1.1 mIU/L

T4 - 17.3 pmol/L

I haven't started on any supplements yet as just had results back on Friday but have bought a Vit D spray with 4000 IU (if that's the right unit but definitely 4000 of something).

jade_s profile image
jade_s in reply toLampy66

Ahh shoot. I misread the units on your vit D result and it's indeed low. I have a saved post from the thyroid UK forum , which you may only be able to see if you join. healthunlocked.com/thyroidu... Anyway I will summarize :

" Like the Vit D Society and Grassroots Health, the Vit D Council recommended a level of 40-60ng/ml or 100-150nmol/L and suggest that a level higher than 50ng/ml or 125nmol/L is of no benefit. "

Here is also a Vit D calculator from Grassroots Health to find help find your optimal dose grassrootshealth.net/projec...

Many also recommend taking Vit K2 together with D to help absorption. From the Vit D society via the web archive web.archive.org/web/2017100...

Magnesium is also important.

4000 IU sounds right. If it's BetterYou spray, they have one with K but you can also get the K separately.

---

Thyroid does indeed seem ok! Thanks.

BleekerStreet profile image
BleekerStreet

I'm not a doctor or any sort of medical person, but the lower end of your B12 does look low. I saw a specialist recently (had to go private, still waiting for the NHS gastro dept. to get back, told it will be months) and my B12 was 126 or 127 and he said that was 'very low'. But my GP says it is fine. Would certainly suggest you demand a second opinion. I've had 3 GPs at various times getting in touch. Two insist my B12 is fine, one that I have PA. I don't understand why they are like this; the consultant said it is to do with money, because injections every other day are required for potentially years, and that is very expensive, particularly in terms of time. It is a scandal.

Maisal11 profile image
Maisal11

join vitamin b12 wake up group on fb, it is run by the b12 society and will have good advice for you.. I wouldn’t take any supplements with b12 in at this stage as it’s likely you have a functional deficiency and by taking supplements you will never be diagnosed as future tests will be skewed.. there are second line tests that can be done such as homocysteine and mma, if either of these are raised then that would be confirmation of a deficiency.. or you could try taking folic acid for three months and then retest both folate and b12 to see if by increasing your folate it has lowered your b12 enough to qualify for injections..

Are you vegan? If not and your b12 is continuously low with deficiency symptoms then you have an absorption problem and will need injections not supplements.. you will need every other day injections regardless until your symptoms go, this can take years

FlipperTD profile image
FlipperTD

Hi Lampy, and welcome.

I'm a scientist, not a medic, so I'm not able to advise on treatment. That's a job for a doctor.

You've given us some useful numbers, but there are others that would me interesting too. A 'Full Blood Count' will have Hb, RBC, MCV and others, and might be a better set of indicators than just the Vitamins and Iron. In the absence of more numbers, then looking at your data, I agree with your doctor. Your Vit D is on the low side, and would benefit from being increased by some means. To be honest, your B12 level is slap bang in the middle of the range.

Vit D can be confusing in what deficiency causes, so address that one first.

Keep in touch because there are some very experienced folks on here!

Hi, so sorry you are feeling unwell.Your GP will consider your serum B12 within normal range (anything above 250 I think) however everyone is different. In other countries anything below 500 is considered low. You could also have Funtional B12 deficiency, where your blood levels look normal but your body is unable yo use it. I think an MMA blood test is needed to test for this. Taking supplements is good to try but if you have Pernicious Anaemia the tablets will not work as they can't be absorbed through the stomach due to Intrinsic Factor antibodies.

Ask your doctor to test for Intrinsic Factor Antibodies, if this is positive then you almost certainly have Pernicious Anaemia.

Hope you get a diagnosis soon.

MrJustatip profile image
MrJustatip

I think jade_s, pretty much got it right. My wife and I also were B12 def and we've both been misdiagnosed several times over the past 10-20 years or so. The lab values are ok to go by, but they are ridiculously out of date. Doctors know little to nothing about vitamins or as we've come to believe, it's either they are ignorant of vitamin information or evil (for prescribing horrible medicine). Anyway, we go to Dr.'s now if we have a broken arm etc. Your If your B12 is in the 300's you are deficient. Act now or it'll only get harder to act down the road. A couple of books to read: Could it be B12 by Sally Pacholok and What You Need to Know about Pernicious Anemia & Vitamin B12 Deficiency by Martyn Hooper. Read and research now while you still can. Good luck.

Lampy66 profile image
Lampy66

Thank you so much everyone for your helpful replies. I'm acting on all the suggestions and I'm armed with a list to move forward with.

Mixteca profile image
Mixteca

I second everything Jade has said. You may be interested in some interesting research about vitamin D and K2 and Covid actually in Israel:

youtu.be/w9h-XQm2qEY

Technoid profile image
Technoid in reply toMixteca

For those interested in what the science is saying about Vitamin D and COVID outcomes, the following may be of interest, although its quite a technical interview and not aimed at a general audience. The overall results indicated that supplementation of Vitamin D did not significantly effect COVID-19 outcomes. They did agree that adequate supplementation to prevent or resolve Vitamin D deficiency is a good idea for other health reasons.

m.youtube.com/watch?v=Sgh20...

Mixteca profile image
Mixteca in reply toTechnoid

Whereas the studies done in Israel, based on Dr Cohen's clinical practice, indicate a strong link between low levels of Vit D and severity of illness, Particularly in BAME/ dark skinned people (reflected in the high mortality rate of such hospital staff during the early days of the pandemic).

It's all about dosage and taking K2 and high levels of zinc when symptoms first appear to optimise the immune system. People with high levels of vit D weren't getting very sick, people who didn't were.

Technoid profile image
Technoid in reply toMixteca

As far as I can ascertain, Dr.Cohen did not carry out any scientific research or trials, nor was there any research conducted from or based on his clinic/practice. He mostly speaks from his own personal experience and his experience of treating COVID patients at his clinic. Nothing wrong with giving an opinion per se but anecdotes (even anecdotes from a doctor) are not evidence.

Dr.Cohen does mention some research but the exact study is not named or referenced in the interview with Dr.Cohen or in the video notes (if I missed the reference please let me know). I looked for a research study that matches what he mentioned and I was able to find a retrospective case-control study published Jan 2022:

"Vitamin D deficiency is associated with higher risks for SARS-CoV-2 infection and COVID-19 severity: a retrospective case–control study"

ncbi.nlm.nih.gov/pmc/articl...

It is important to understand the type of study that this was (observational) since this type of study can find correlations but cannot prove causation and better evidence is typically provided from a well-run interventional study, ideally, a blinded, placebo-controlled, randomised controlled trial.

Types of studies and the evidence hierarchy are explained here:

openoregon.pressbooks.pub/n...

The study concluded:

"In this large retrospective case–control study, an inverse correlation was demonstrated between the baseline level of vitamin D and the risks of SARS-CoV-2 infection and of severe COVID-19 disease when infected. "

They also mention several important limitations:

"Although having a comprehensive demographic and clinical background data, we acknowledge our study's limitations as being observational, noting the difficulty in eliminating all possible confounders. Whether vitamin D plays a causal role in COVID-19 pathophysiology or just a marker of ill health is not known, and our results should be carefully interpreted, as patients positive for SARS-CoV-2 and with severe COVID-19 had a higher number of comorbidities.

A major limitation of our study is the long time range during which vitamin D levels were measured before eventual infection or hospitalization, and lack of information on treatment with vitamin D supplements during this period."

They specifically mention the need for studies higher up the evidence hierarchy:

"Interventional, randomized controlled trials are classically required to establish causality of observed statistical associations."

and

"Further large randomized controlled trials are warranted to determine if vitamin D supplementation can decrease COVID-19 incidence and its severity."

These are good provisos to mention on this research outcome and pertain directly to the two trials which are covered in the video I posted, which are

CORONAVIT (a randomised controlled trial)

bmj.com/content/378/bmj-202...

and

CLOC (a blinded, randomised, placebo-controlled trial)

bmj.com/content/378/bmj-202...

Both these trials are interventional studies, were well run and lie higher up the evidence hierarchy than the observational trial previously mentioned. A well-run blinded, randomised, placebo controlled trial is the gold standard of research whose research outcomes carry much greater scientific weight than any observational trial.

The conclusions of these trials were, respectively:

CORONAVIT

"This study found that implementation of a test-and-treat approach to correct suboptimal vitamin D status in the UK population was safe and effective in increasing 25(OH)D concentrations in people aged 16 years and older with baseline concentrations <75 nmol/L. This was not, however, associated with protection against all cause acute respiratory tract infection or covid-19."

CLOC

"Supplementation with cod liver oil (containing 10mcg (400IU) of Vitamin D) in the winter did not reduce the incidence of SARS-CoV-2 infection, serious covid-19, or other acute respiratory infections compared with placebo."

I think no-one would disagree that avoiding vitamin D deficiency and getting your vitamin D into a good range is important for many health reasons but the current scientific consensus including evidence from gold standard research including randomised controlled trials, does not indicate any benefit versus COVID-19 unless a deficiency is present.

‐------

Regarding Zinc, an NIH panel that reviewed the medical evidence and trials (updated in March 2023) concluded that:

"There is insufficient evidence for the Panel to recommend either for or against the use of zinc for the treatment of COVID-19. "

"The Panel recommends against using zinc supplementation above the recommended dietary allowance (i.e., zinc 11 mg daily for men, zinc 8 mg daily for nonpregnant women) for the prevention of COVID-19, except in a clinical trial."

Ref: covid19treatmentguidelines....

Dr.Cohen mentions you can take up to 40mg of Zinc with no ill-effects - it is important to note that the tolerable upper limit for Zinc is 40mg from food AND supplements. Long-term supplementation of a supplemental dose of 40mg would put zinc intake above the tolerable upper limit and may have side effects.

-------

Regarding K2 there is no AI (adequate intake) set, let alone an RDA (recommended dietary allowance), because the European Food Safety Authority could not find sufficient evidence of any benefit to taking K2, beyond consuming adequate K1.

"The Panel considers that available evidence on intake, absorption, function and content in the body or organs of menaquinones is insufficient, and thus sets AIs for phylloquinone only."

Ref : efsa.onlinelibrary.wiley.co...

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience, I can tell you that it's possible to have severe B12 deficiency with normal range serum B12 results.

UK guidance on B12 deficiency suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

What to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Are your symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Some people on this forum have been diagnosed with Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

MMA, Homocysteine and Active B12 (Holotranscobalamin) tests may help to diagnose Functional B12 deficiency.

Have you been tested for PA and Coeliac disease?

These are both auto immune conditions that can lead to B12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Coeliac disease

NICE guidelines Coeliac disease

nice.org.uk/guidance/ng20

More info on diagnosis of coeliac disease on Coeliac UK website.

coeliac.org.uk/home/

Local B12 deficiency guidelines

I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. Not sure about equivalent in Northern Ireland.

If you can't find local B12 deficiency guidelines online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to your ICB or Healthboard asking which B12 deficiency guidelines are used locally and for a link to or copy of the guidelines.

Some local B12 deficiency guidelines are not helpful. See blog post below.

b12deficiency.info/gloucest...

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result

b12deficiency.info/your-ser...

It's vital to get adequate treatment for B12 deficiency. Inadequate treatment may increase the risk of developing permanent neuro damage. In severe cases, spinal cord may be affected.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA, mentions SACD

martynhooper.com/2010/09/21...

Misconceptions

Many UK forum members have met health professionals with a poor understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

Some of the treatment info needs updating.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

There is more information I could post, just let me know if you'd like more.

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