High B12 without injections - Symptoms of deficiency

[pk97]

TL;DR: Has anyone had levels of B12 above the standard reference range (while never having had any B12 injections) before getting diagnosed with PA?

Hi, over the last couple of years Ive suffered from what I believe was bouts of anemia which I recovered using iron and B12 supplementation.

After suffering from a recent bout of what has all the classical symptoms of anemia, I started to take a sublingual B12 dropper and iron tablets. My symptoms got better and I got my bloods tested after I had recovered from the most severe symptoms.

However, I still suffer from symptoms of:

Tingling in hands and feet (Left fingertips not stopped for 2 weeks now)

Headaches

Fatigue

Tinnitus

Orthostatic Hypotension

Faint/Dizziness

Irritability

Balance issues

Previously, when I was at my worst I also suffered from heart palpitations and raised heart rate after movement.

Both GPs at my surgery have told me it is categorically NOT anemia as my bloods have come back normal after I suggested PA and even tried to tell me it was psychosomatic.

I stopped taking my B12 oral supplement for around 2 weeks before another blood test and symptoms worsened in this time. My serum B12 came back at 1097 ng/l. Looking at previous results from march 2020 I had B12 levels of 823 ng/l which is also out of the reference range.

What I want to ask is: Is it possible to have levels of B12 well above the normal range (without ever having injections) and have PA?

It doesn't right to me that I'm experiencing the symptoms of a deficiency when in fact my blood results are saying I have overly high B12.

[Gambit62 Administrator]

What you are describing doesn't sound consistent with PA which is actually an auto-immune disorder of the gut that attacks the mechanisms that your body uses to absorb B12 leading to a B12 deficiency. Macrocytic anaemia is a possible consequence of this but isn't always present.

It is possible to supplement so much B12 that you raise B12 levels above normal range - your kidneys have a finite capacity to remove B12 and if you are putting B12 in faster than that then levels will build up.High serum B12 levels don't rule out the involvement of B12 - and it could be a functional B12 deficiency (high serum B12 but with all the signs of deficiency - how this happens isn't fully understood - usually tested for by looking at metabolites that will build up if your cells don't have enough B12 to recycle them: MMA and homocysteine - but both can be raised by other causes. Tests are complex and blood may need to be drawn in the hospital running the tests. There are some haematologists that think that just looking at these two metabolites may not tell the whole story.

The rate at which excess B12 is removed by the kidneys can vary significantly but it is generally recommended that you refrain from B12 supplementation for 3-6 months at least if you want to get a B12 baseline.

[Nackapan]

Have other possible causes been explored by the medics ?

You mention orthostatic hypertension.

My daughter had all of your symptoms snd more.

She was eventually diagnosed with Pots after a tilt table test after the more basic standing test.

Akso HEDs on the Ehlers Danlos scale.

Borth affecting autonomic function.

All triggered by undiagnosed b12 deficiency megobolastic anaemia abd severe ferritin and folate deficiency.

I mention thus as early diagnosis obviously has a better outcome fir any condition.

This condition like so many others have tge same or similar symptoms.

She was akso told on several occasions psychosomatic or a stress related response....which did cause upset and stress!!!

She us on regular b12 injections

Daily 400mcg folate

Now on a medication to stay upright.

So keep pushing fir more testing

Whether it is:

Functional b12 deficiency as mentioned by gambit62

Or

Thyroid problem

Or

The start of POTS

Have you seen a cardiologist?

Hope you get some explanations and a diagnosis soon dso you van manage your difficult symptoms the right way.

[pk97 in reply to Nackapan]

Hi thank you so much for your reply! I've just had an ECG done but not had the results back. GPs have been quite dismissive but I don't think I've managed to portray all the information best in the short telephone conversations that now replace appointments.

I've now made a symptom log however and I plan to go back and see what they have to say, however I am worried that because nothing has come up on the blood tests they may still remain dismissive.

As regards to POTS, is this something caused solely by the deficiency but doesn't recover as B12 levels are increased? I'll look it into it more thank you.

[Nackapan in reply to pk97]

I'd never heard of it before. Bloods cone back normal.

Initialky b12 folate ferritin vir not done.

Severe joint pain, faints ect no one put the prices of the jig saw toflgether.

Brain scans lumber puncture 24 he urine and heart and BP checks before the simple b12 test!!

She also had e c g s that were normal.

She was having 'anxiety attacks ' that were not caused by psychological reasons bur by physical reasons .

The autonomic system damaged

Fight or flight mode

The severe b12 deficusny affect different people different ways

It csn be turned round. 'Deliciously Ella's an example.

It has mant causes.

B12 being one if them

I think depends on what yiu are pre-disposed to genetically.

[JDorian0817]

Pernicious anaemia means you can’t absorb B12 from food or oral supplements. It has to enter the blood stream directly.

If you were taking B12 supplements and your levels went up, it cannot be PA.

I’m sorry this doesn’t give you an answer you’re looking for, but push your doctor for referrals to diagnosis teams and make them look properly at what is going on.

[Gambit62 Administrator in reply to JDorian0817]

Please note that passive absorption is not ruled out by PA. There have been studies that have involved small numbers of patients with PA that found that, as with other conditions, the majority do absorb B12 from high dose oral, but there is always a sizable minority for whom this method is not affective. High dose oral in this case means doses >1000mcg daily.Where high dose oral does work it can be effective for maintenance but in patients with deficiency it will be very slow to raise and correct levels, so loading doses will be needed.

[pk97 in reply to Gambit62]

Thanks for the replies. I should mention that when I was taking this sublingual dropper I was taking 1000mcg several times a day for a few weeks then left it for probably 3 weeks before having the blood test that showed high levels.

In this time, my symptoms improved gradually before stopping from which they became gradually worse.

I seem to match a lot of the symptoms of B12 deficiency and struggling to find anything else that it could be as everything else is coming back normal on the blood tests. Because of the normal tests, the doctors don't know and are dismissive but adamant it's not B12 deficiency because my haemoglobin was normal and now I've just had my serum B12, above normal B12 levels as well.

[Gambit62 Administrator in reply to pk97]

it is unlikely that even 1000mcg dropper 3 times a day for 3 weeks would have been sufficient to raise serum B12 levels that high if you had a B12 absorption problem.Functional B12 deficiency might be a possibility in relation to current situation but you would need to ask for tests I mentioned above. Whislt there are genetic possibilities that would explain a need for high levels of serum B12 they are off topic for this forum. I hope you find some answers

[JDorian0817 in reply to Gambit62]

Interesting! I hadn’t realised this. My doctor explained the situation as no intrinsic factor = no absorption.

[Gambit62 Administrator in reply to JDorian0817]

certainly applies to absorption in the ileum - no IF no absorption. The process behind passive absorption is different - and not entirely understood - and the reason why it works for some people and not for others also isn't understood. The early cure of PA was actually a concentrated liver extract - before a way had been found to grow B12 in vats. Rather glad that I did find a way of making B12! Injections are the surest way of ensuring B12 gets into the body but the fact that so many of us then need to maintain really high levels of B12 to function after injections means that that isn't a perfect solution either ... though it is one that there is a solution to, when GPs are prepared to have an open mind and not treat us all like the mythical statistic average.

[pk97 in reply to Gambit62]

The absorption process behind it is passive diffusion into the blood from the sublingual artery isn't it? I thought that part was understood well?

[Gambit62 Administrator in reply to pk97]

not sure what you are saying. on one level passive absorption looks like osmosis but the size of molecules involved means there has to be something else going on. There is a lot about biochemical and biological processes that isn't fully understood.

[pk97 in reply to Gambit62]

Interesting I didn't know that.

[PointOfReference]

I think this is tricky as you've been self medicating and its helped you. On the same note you're after a diagnosis, which is only possible if you stop self medicating.

I think you have three choices.

1) Stop all supplements for at least 3 months. Then return for testing and diagnosis. This will be the hardest for you

2) Switch to oral tablets from sublingual. This could help to test if the liquid is going into your bloods directly or through your stomach. When you take the digestible oral tablets, if you're not as healed as you would normally be via the sublingual, there's a chance you may have absorbtion problems.

3) You simply get private injections or seof inj ct and do your self treatment properly. This way youll have to assume you don't have PA and that you'll probably never be diagnosed.

Hope that helps

[pk97 in reply to PointOfReference]

Thanks for the reply! I don't really want to stop supplements after the way I've been feeling as I compete in sports and this was badly affected after a previous bout of anemia like symptoms.

Suppose I self inject, Ive heard there's no evidence of overdose from B12. Yet if I'm completely wrong and my B12 is already high, could this cause an issue? I understand that may not be answerable, but thanks for the help anyway.

[PointOfReference in reply to pk97]

Because B12 is water soluble it means any excess gets excreted. So there's really no limit to how much you have. You cant overdose.

Doctors will tell you there is a high range but its not dangerous to be high.

I think you can only really go by your symptoms, not the numbers. As they dont really mean much unless theyre low. If symptoms are still around after 6 loading injections then you probably need regular Every Other Day injections until theyre gone.

The only notable side effect from lots of B12 is acne. But this should fadeaway after a while.

Good luck

[ForumUser in reply to pk97]

Re this..

> Suppose I self inject, Ive heard there's no evidence of overdose from B12. Yet if I'm completely wrong and my B12 is already high, could this cause an issue?

You might find this helpful. It cites some very interesting numbers!

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/engli...

[pk97 in reply to ForumUser]

Thank you for this link

[IamOneDummy]

Hello,1st It is NOT in your Head!

although I doubt it is your B12

2nd if your MMA is normal and especially if your B12 is that high …

Have you had a TILT TABLE TEST or other testing to check for

Postural Orthostatic Tachycardia Syndrome (POTS)?

3rd

As for reference intervals (the edges of the reference intervals are another story that some physicians have differing opinions about altogether especially when several labs at the edge of an interval all point to the same conclusion/diagnosis) but this is another topic for another time or place and if your B12 level is not on the lower end of the normal reference interval and accompanied with an MMA level at the higher end of the normal reference interval and

maybe even accompanied with a single wonky random other lab listed later then maybe other diagnoses are more likely that aren’t B12 deficiency

but also

CLEARLY ARE NOT psychosomatic either.

Have you ever had a B12 level with a reflex to MMA level done at the same time if your B12 level is not on the low end of the reference interval while the MMA level is simultaneously at the higher end of the reference interval and your homocysteine level and folate level is also good

it is probably unlikely a B12 deficiency

or

B12 deficiency related anemia

especially if the labs I list much later in this are also checked and are fitting into the middle of the reference interval criteria

and

your physicians are also unable to identify any concerns there that relate to the Vitamin B12 concern you are having.

4th

My next question AGAIN to you would be

if you have had any

Tilt Table testing

or other testing to check for

Postural Orthostatic Tachycardia Syndrome (POTS)

and/or

any other commonly co-occurring conditions such as

Ehlers Danlos Syndrome- Hypermobility Type (hEDS)

and/or

Mast Cell Activation Syndrome (MCAS)

or

any other conditions that cause similar symptoms that you also have.

5th

I would suggest that maybe you go to

ehlers-danlos.com

or another Ehlers Danlos Syndrome organization’s website that is well known & highly accepted by the medical community & backed by medical research & educational institutions that supports Ehlers Danlos Syndrome and do some research on

Postural Orthostatic Tachycardia Syndrome (POTS)

& maybe also research

Ehlers Danlos Syndrome- Hypermobility Type

if you also have a

good degree of Joint Hypermobility and/or score high on

the BEIGHTON SCORING SYSTEM

the 1st time I was asked to do the tasks on this scoring system by a doctor I think I end up scoring a 9 or close to the max score on it at age 30 when I was 1st diagnosed as having Hypermobile Ehlers Danlos Syndrome, I didn’t know that I was that much more flexible than most other people my entire life which I now find weird when I think about it since I do not stretch or exercise often but when I was young I used to be able to put my feet behind my head or over my shoulders and am still capable of putting my hands behind my back in the prayer position although I don’t do this because I have come to find out that this can cause damage

6th

Many of your symptoms sound similar to some of the problems I have when my Postural Orthostatic Tachycardia Syndrome (POTS) & Ehlers Danlos Syndrome- Hypermobility Type is bothering me, my Postural Orthostatic Tachycardia Syndrome (POTS) is worse when I have my menses because it and the hormone changes that come with it can affect the body’s fluid and electrolyte balance as well as seems to increase the frequency/severity of headaches I have from my atypical vascular headaches and Postural Orthostatic Tachycardia Syndrome (POTS) already can seem to cause headaches in many patients from what I understand anyway as well as a whole slew of other symptoms.

7th

A little more about me (maybe a little TMI) so you understand where I am coming from and why I feel like I can try to understand where you are coming from and feel like I possibly could take a mental walk in your shoes per se:

I have Hypermobile type Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), Atypical Vascular Headaches, at least 1 unknown condition we are still trying to pinpoint, and a Vitamin B12 deficiency (B12 278 ng/l & mma 305 nmol/l) while on an oral supplement after being off my B12 oral supplement for 2-3 weeks

& off the injections after a little over 1 year.

Although I am not a physician & this does not constitute as medical advice, I have been through my share of invalidation by the medical community while seeking medical care for my own real medical conditions.

I can definitely relate to how that can make one feel as well as how it can sometimes lead to a entire slew of other problems such as misdiagnosis, family members as well as other medical providers losing faith in what you are telling them with regard to your symptoms as well as the severity of those symptoms.

I have been through that as well being told it was all in my head, being sent to mental health for a consult after being put on Paxil because I must be depressed with an adjustment disorder because my military doctors could not find a reason for me to be in pain just months after boot camp (I’m less than 64 inches tall & would have to run in cadence with the tallest person [over 73 inches tall] in my division which caused shin splints during boot camp & later a sacroiliac joint mal alignment) so I was told I had depression, adjustment disorder, a personality disorder, a slew of other mental health conditions that I mostly did not fit the criteria for and being told my pain and much of my headaches, nausea, and other symptoms were all psychosomatic, it wasn’t until about 10 years later I found out that I actually had Postural Orthostatic Tachycardia Syndrome (POTS) via Tilt table testing and other testing after initially being misdiagnosed with and treated for Inappropriate Sinus Tachycardia for several years.

Then after being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) for several years and questioning several physicians and finally a genetics counselor what causes Postural Orthostatic Tachycardia Syndrome (POTS) I was also worked up for Hypermobile Ehlers Danlos Syndrome (hEDS) because they tend to run hand in hand or co-occur (ehlers-danlos.com/pdf/2018-...

My situation is also complicated by the fact that I have a

high serum Iron 269 ug/dl (2021 June)

high Iron Saturation 70%

Transferrin 273 mg/dL

TIBC 382 ug/dL

HCT 43.9%

HgB 15.5 g/dL

MCH 31.3 pg

RBC 4.96M/uL

PLT 262 K/uL

MCV 88.5fL

Vitamin B12 278 pg/mL

MMA 305 nmol/L (2021 June)

Serum Folate 15.3 ng/mL (2020 Dec)

HgB A1c 4.5% (2020 June)

Vitamin B-6 20.4 ng/mL (2019 November)

Vitamin B-6 4.7 ng/mL (2019 May)

& have

Polycystic Ovary Syndrome,

Interstitial cystitis,

Rosacea,

Reactive Airway Disease,

Occasions of Eczema or atopic dermatitis,

Degenerative Disc Disease

Degenerative Joint Disease,

Cervical Radiculopathy

De Quervain's Tenosynovitis/ Radial Styloid Tenosynovitis

Spinal Stenosis, &

a slightly increased risk of developing celiac disease due to a variant change from a C to a T in the DNA sequence of the HLA-DQA1 gene, at the tag SNP for the HLA-DQ2.5 haplotype at marker rs2187668,

have Irritable Bowel Syndrome (IBS),

already have a history of H. Pylori, & GERD,

am a Factor V Leiden heterozygote (F5 gene/ Thrombophilia carrier) which also puts me at a slightly increased risk of developing a blood clot especially as I age and with certain lifestyle factors,

am a C282y heterozygote (Hereditary Hemochromatosis carrier) &

may have a rare non-HFE or Non-classical Hereditary Hemochromatosis variation that alters how much iron I absorb from my food but have been unable to get my physicians to test me for it although I have had a Genomics physician recommend that so do so, have a history of a TBI from a MVA

among other reasons.

If your labs such as:

MMA level,

RBC Folate level (this is a better predictor of the body’s folate store compared to a serum level according to several medical authorities including the WHO although it has been some time since I have had a chance to see if there has been an update to this)

Complete blood count with Platelets & Differential

as well as

Reticulocyte Count

and

Blood Smear

have all been checked and are all in the correct proportions

to one another

and

cell sizes are good and

cell counts (such as the mature to immature cells) are in the correct proportions

to one another

and the amount of

Hemoglobin,

Red Blood Cells (RBC) ,

Mean Corpuscular Volume (MCV)

Mean Corpuscular Hemoglobin (MCH),

Mean Corpuscular Hemoglobin Concentration (MCHC),

and

all else are falling well in the

middle of the reference interval

it would

seem highly unlikely

to be caused by a Vitamin B12 Deficiency induced Macrocytic Anemia nor B12 and Folate deficiency induced Macrocytic Anemia.