Help with B12 Deficiency : I took a... - Pernicious Anaemi...

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Help with B12 Deficiency

Cherj
Cherj

I took a private blood test, also a test with the NHS in order to get diagnosed with hypothyroidism. The result of the private blood tests indicate that I am very low on B12 (87). Will include screenshot of my private test results. My gp treated my hypo, a vit D Deficiency, and a folate Deficiency with Levothyroxine, fultium d3, and folic acid, but basically ignored my B12. I plan to go back to the gp and question this, but would it be better to self treat? She seemed quite unconcerned that my B12 was so low.

Can I take B12 supplements in the meantime till I get an appointment? Which are the best ones to take with a gut absorption problem?

To note, I am having a few symptoms of B12 Deficiency, but they are so similar to the Thyroid Symptoms, its so hard to tell which is which. Occasionally I get the tingling in hands and feet, mostly it's just fatigue all the time, tinnitus, some dizziness and balance issues, and brain fog.

12 Replies
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honestly, im surprised you are even feeling well enough to question the doctors orders but thank goodness you are.

yes, you need b12 and in a hurry. please demand loading injections from your doctor because these idiots will just ignore the next patient's b12 issue unless we work together to educate them, one at a time.

the thyroid does not function properly without b12 and D.

BTW, vit D requires magnesium to function properly.

Additional, ATP, Adenosine triphosphate, does not function properly without magnesium to active it. ATP, is our cells' energy source.

en.m.wikipedia.org/wiki/Ade...

with soooo many nutrient deficiencies i would be assuming you have an absorption problem. please get checked for h pylori, which reduces acid in your stomach, which we we need to digest our food properly. h pylori is a root cause of b12 and iron issues.

i had h pylori without any heartburn but if you have heartburn and therefore began treating it with any kind of acid blocker/reducer, please stop taking it immediately. you must be off all acid blockers for a minimum of 14 days prior to having an h pylori breath or stool sample test.

Cherj
Cherj
in reply to KimberinUS

I do have a gut absorption problem, but don't take anything but calcium carbonate antacid for any heartburn I have. I've also started eating yogurt daily to try and rebalance my gut. I am a aware of the additonal supplements I need to be taking in order for the vit D to absorb, and have ordered magnesium, selenium to reduce my antibodies, and K2 mk7 to aid with all of this. I would like to start taking B12 supplements now, but through reading some of the posts on here, others have said to go to a gp to have them diagnose and prescribe injections before taking any supplements. I'm a bit anxious that my gp will dismiss my concerns about B12, since she didn't seem concerned enough to do anything about it in the first place. To be honest, I am battling daily fatigue and it seems to be getting worse, which is why I would like to start taking B12 immediately (maybe the liquid spray under the tongue since I have an absorption problem) . I am waiting for an appointment to open up at my gp so I can go in and discuss the B12 issue, but have no idea how long I'll have to wait, maybe a week or longer.

KimberinUS
KimberinUS
in reply to Cherj

please stop taking the bicarbonate. that reduces your acid, which reduces your absorption.

please look into low stomach acid on google. it has the same symptoms as high acid and i would bet you have low stomach acid, and lower it to nonexsitant with the bicarbonate, which is why your pain goes away when you take it. BUT it causes absorption issues.

remedies are to drink apple cidar vinegar, lime juice or betaine hcl tablets, in an effort to increase acid.

the vitamin D you are taking is likely using all of your magnesium (needed for ATP). try using epsom salt or deep sea salt bath until you can start your magnesium suppliment. 3 cups in a bath for an hour will reduce anxiety, irritability and have a noticable effect on fatigue for 1 to 3 hours if you are low and then you will know for sure that you need the magnesium suppliment.

please don't take any b12 suppliments prior to talking to your doctor again because they may require another test and if your b12 improves at all the doctor might brush you off out of hand forever.

DEFINITELY get tested for h pylori.

Polaris
Polaris
in reply to Cherj

Your B12 is very low Cheri and your GP's failure to treat this urgently with injections is shockingly negligent 😱 . Unfortunately, if you supplement with B12 tablets now any further test results will be skewed and make it harder to get B12 injections, which is the recommended treatment in all the guidelines for the neurological symptoms of PA/B12def. you've described in order to prevent permanent damage.

If the cause of B12 def. is dietary, oral supplementation and a nutritious diet will usually suffice but, if you have an autoimmune condition, (Hashi's and PA/B12 often co-exist)*, H/Pylori, or problems with digestion, e.g. coeliac, Crohns, gastritis, gastric surgery etc. the condition is more complex as B12 from food is not likely to be absorbed, depletes over time and oral supplements are not usually absorbed either.

bmj.com/content/349/bmj.g5226

You could first try writing to your GP (useful link with suggestions below) enclosing above link to latest BMJ research document summary (full document behind a paywall, which GP should be able to access) and make another appointment, taking someone close with you for extra support in getting this taken more seriously.

b12deficiency.info/b12-writ...

The Dutch links on the r/h side of this forum explain more about testing, B12 misconceptions and the importance of early and adequate treatment. It might also be a good idea to join the PAS - they have leaflets for professionals and may be of extra support in getting the correct treatment urgently.

Many of us on the forum self inject if you eventually decide this is the best course.

stichtingb12tekort.nl/weten...

..........

Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B deficiency for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately :

‘B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

Finally, this research link was originally posted by Diogenes, Dr John Midgley, scientist and advisor to TUK. It highlights the progression of *autoimmune thyroid disease through deterioration of gastric mucosa, leading to PA:

journal.frontiersin.org/art...

Hoping you get better treatment very soon......

PS I found daily spoonfuls of organic saukraut (best probiotic I'd tried) miraculously relieved the various digestion problems I'd had for years,

Cherj
Cherj
in reply to Polaris

Thanks for the advice. I will hold off on the B12 supplement and go see my gp asap. Will also mention the test for h pylori as well, and lay off the bicarbonate.

wedgewood
wedgewood
in reply to Cherj

It’s possible that you have PA , but the test for it is so unreliable if it comes up negative . If you have PA , you then will have low /no stomach acid -Hypochlorhydria/ Achlorhydria so taking antacids is the worst thing you can do for your health . I need probiotics and Betaine HCL to help me with low stomach acid. If you do have PA and you take supplements , then your B12 Reading will go

Up , but you will not absorb it . But your GP

will then say that you are OK , and you won’t get injections . With such a low reading , you need injections ASAP . PA patients can only absorb B12 with injections . You’ve had some good advice from KimberinUS

PS. Sorry, I forgot to mention Cherj that cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood, so B12 levels must be given a chance to build up before supplementing folic acid.

Cherj
Cherj
in reply to Polaris

Thanks for that, Polaris. Im thinking I'm going to have to self treat for my B12 Deficiency, as firstly, I have no faith in my gp that they will treat this as seriously as it should be, and secondly, I can't even get an appointment with them right now due to a shortage of doctors at the moment, so it could be weeks before I am able to go see them about this.

So, if I self treat, is injection the only recourse I have, or do I have other options? I've heard some on here use the liquid spray and lozenges with some success, is there a resource you know of that sells high dosage spray or lozenges? I don't feel very confident to inject myself, so what would you recommend?

Polaris
Polaris
in reply to Cherj

I can't imagine how ill you must be feeling right now with such a low level Cherj, so it must be tempting to use sprays, sublinguals etc. but this will be nowhere near enough if you have an absorption problem, as only a tiny amount will be absorbed.

Personally, I would email the practice manager of the surgery ASAP as your GP is wrong to treat only folate, whilst ignoring your very low B12 levels! Have you someone close to help and support as I know from experience this can be very stressful and make things worse.

Would this letter posted by ktwing help as a template ? The circumstances are quite different but could help in explaining what the surgery need to know to start treatment urgently...... If you then need to SI, I assure you that, although a bit daunting at first (sub cut can be less so), you will very quickly become adept and so glad you did.

healthunlocked.com/pasoc/po...

Another link re. thyroid/PA connection:

ncbi.nlm.nih.gov/pubmed/186...

Good luck Cherj - will keep fingers crossed for much better treatment for a good recovery soon.......

Polaris
Polaris
in reply to Polaris

PS. Many of us on the forum SI if you need more info on this

JoRR
JoRR
in reply to Polaris

I thought it was simply that you need both at the same time - I was advised that it is important to take high dose folic acid supplements 5 mg daily while on alternate day injections (can be reduced if you're maintaing levels ok, and as injection frequency reduces) I was advised to take the folic acid an hour before injecting as it takes a while to get into your system. But it is important not to take folic acid with an *untreated* B12 deficiency as it can mask the low B12

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