Hi - I've been directed by an Administrator on Thyroid UK to ask about my recent blood test for Vitamin B12. My GP says it's fine but she thinks perhaps it's quite low:
204ng/L Range: 197-771
I have no thyroid gland and supplement with replacement thyroid hormone but still feel pretty unwell. Symptoms include extreme fatigue, lack of focus and motivation, brain fog, nighttime urination urgency, thigh tingling and loss of sensation, depression, obesity, skin problems, severe arthritis etc. I've been ascribing all of these symptoms to Hypothyroid and it's likely some of them are, but perhaps not all? Also, I'm told my Folate levels are equally low:
Folate 2.3ug/L Range 1.9-25
Ferritin is good.
So I would be grateful if someone could take a look at these result and advise whether I have a problem that is contributing toward my feeling dire.
Many thanks in advance.
Written by
marlathome
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I presume you’ve had an HbA1c test as your symptoms fit diabetes better than a B12 deficiency.
If that’s been ruled out then, yes - your B12 is low enough to be of concern. Ask to be treated according g to this protocol - hey.nhs.uk/wp/wp-content/up...
Thank you for your response. I had HbA1c and was told it was normal so ruled out diabetes. I'll read the link you posted but don't think my GP will supplement B12 and he considers it within range and needs no further action. I have problems with Thyroid medication prescribing and he is generally unsympathetic if he feels the tests he's ordered are 'fine'. I will probably have to self-supplement as I do with Thyroid meds. Thanks again.
serum B12 isn't a precise test - if you do the same test multiple times on the same sample the results will vary by about 20% - that means it is more than possible that the average of a large number of repeats on the same sample could be below the normal range and this is just one of the ones that is above.
The range for serum B12 is also enormous. This covers where a large numbers of individuals are okay but there are logical problems assuming that an individual who is within the normal range is actually okay - that isn't the way statistics work.
The BCSH standards (British committee for standards in haemotology discuss the limitations of serum B12 as a definitive test in a great deal of detail and recommend that, because it is such a problematic test and the consequences of leaving a deficiency untreated, particularly where there are neurological symptoms, is so serious that treatment should not be based just on symptoms.
It also states that 25% of patients who are B12 deficient do not initially present with macrocytosis so the absence of macrocytosis cannot be used to rule out B12 deficiency.
You can access the standard here and your GP can access it through the BNF.
(there may be a newer version on the BNF that has a minor amendment to the treatment regime).
This standard is consistent with NICE guidance on treatment of B12 deficiency.
Suggest you write to GP (copy to administrator) pointing out the above and asking them to refer to the source and treat you in accordance with the BCSH standards.
You might also suggest that they might find it useful to look at the area on the PAS website particularly aimed at helping medical professionals to improve the diagnosis and treatment of B12 deficiency.
Thank you for your response. I believe further approaches to my GP to investigate something he believes unnecessary will further irritate and alienate him - we already have tussles around prescribing thyroid medication. I have to admit that a lot of the information contained in the link you pasted didn't make the picture any clearer for me (apologies if I'm being dim!) but I did understand that other autoimmune conditions are often present, i.e. Hashimotos, vitiligo, both of which I have. Rather than ask my GP to run more tests do you think it's possible to have tests carried out privately to ascertain if I have a B12 deficiency, folate deficiency, anaemia or anything else that might be contributing to my feeling as though I'm dragging myself around every day? Thank you.
from the results above - you are not folate deficient.
There are plenty of companies that will do full blood counts - which would be the tests that would identify an anaemia - though there are a lot of different types of anaemia.
There are other tests that can be done in relation to B12 - homocysteine and MMA which look at nasty products that build up if you don't have enough B12 for your cells to recycle them into useful building blocks but they need to be done in context. You can certainly get homocysteine done by private firms though MMA is a more complex test.
It would be better to try and work with your GP though I know that can be difficult.
Thank you once again for your advice. Can I ask do you advocate self supplementation with B12 and, if so, are you able to recommend a good source I could take? I do understand what you say about working with my GP and, of course, that would be great but it's not really feasible just now.
My plan is to take it myself for a couple of months, say, or whatever time scale is optimal; see how I feel and then ask to be re-tested by my GP. I think that approach would work best with him and I'd be interested to know if B12 would help with the awful fatigue etc. Or would you advocate having homocysteine tested before supplementing? Sorry for the barrage of questions. Many thanks.
think you can get homocysteine done privately at St Thomas in London and it would need to be done before you started supplementing.
Personally I think your GP should be following protocol and giving you a trial of B12 to see if it helps.
A lot of people (and that includes me) do self medicate. You can get high dose oral tablets and sprays - and nasal sprays - without the need for a prescription - and they can be useful for keeping levels high but are unlikely to raise B12 levels quickly - as would be the case with injections. Even if it is B12 it can take months for B12 to really have an effect. I didn't notice anything for over 6 months (though also true that I wasn't sure what I should be looking for as my diagnosis came slightly out of the blue).
You can source injectable B12 from on-line pharmacies in Germany - Versando.de is a propular choice - numerous posts about it. In Germany injectable B12 for medicinal purposes isn't prescription only. You can also source injectable B12 not being given for medical purposes - it's used as a slimming aid and pick me up in the UK and that isn't covered by over the counter rules - but also won't be subject to the same quality controls as B12 being used for medicinal purposes.
I source supplements from a company called detoxpeople.
I source injectable B12 from a german on-line pharmacy - suggest you look back through the last few days of posts - was one recently about some B12 sourced from the UK
Although there is an overlap of B12 deficiency symptoms with those of Hashimoto's, those you've outlined, together with low B12 serum test results describe the neurological signs of PA/B12 deficiency - having Hashimoto's certainly puts you at higher risk as 40% of those with thyroid disease go on to develop PA/B12def. from gastric atrophy (often silent)) affecting absorption.
You could try writing to your GP with latest BMJ research document below (summary only) full document behind a paywall but GP may be able to access it. This gives an idea of the complexity of diagnosing PA/B12 deficiency as well as the importance of treating neurological symptoms without delay. It might be a good idea to take someone close with you to your next appointment for extra support and to ensure this is taken seriously:
If this is still not an option with your GP, many on the forum self inject and it may be that this is what you eventually find you would prefer to do.
Two experts on the frontline, Sally Pacholok, author of, "Could it Be B12?", and Dr Joseph Chandy, have been studying vitamin B12 deficiency for years. Both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately.
Dr Chandy describes how low vitamin B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ that 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 (hydrochloric) 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.’
..........................
The Dutch links on the r/h side of the HU PAS forum also explain about testing, B12 misconceptions and the importance of early and adequate treatment:
"Similarly, autoimmune gastritis is a chronic inflammatory disease involving gastric body and fundus, with the progressive reduction and/or disappearance of the native gastric glands that are sometimes replaced by intestinal or pyloric epithelium (metaplasia), The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year, while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production. These alterations interfere with absorption of essential nutrients leading, at first, to iron-deficient anemia, followed by PA if the self-injurious process involves the IFA".
Thank you so much for your response. My problem has primarily been with thyroid disease - I had Hashimotos with nodules 30 years ago which lead to a total thyroidectomy and I've never felt well since. I've been a member of Thyroid UK forum for a number of years and the members have been incredibly supportive, knowledgeable and helpful. I have been totally sidelined by the NHS is addressing my problems with current thyroid medication and my GP is adamant that he won't prescribe anything other than Levothyroxine, which makes me feel worse. So I, along with many other people with hypothyroid disease, have to purchase medication from overseas. I have my levels checked reluctantly by my GP and then post them on the Thyroid UK forum. Having had these done in the last couple of weeks I was advised that both my B12 and folate levels looked quite low, along with Vitamin D3. The thing is that, apparently, no thyroid replacement medication will work optimally if there are underlying vitamin/mineral deficiencies so I'm fighting a losing battle increasing my thyroid meds in an attempt to make me feel better. I have to address the other issues first, which is why I asked on this forum for advice. I know for an absolute fact that my GP will not read anything I send to him - I've gone through all of this ad nauseum with the thyroid issues. Basically, I just need to have the B12, folate and D3 levels up to optimal so that my thyroid medication has a chance of working, and I need to do this on my own as going through my GP is stressful and upsetting.
I have had gastric issues in the past and continuing - I had my gallbladder removed followed almost immediately by pancreatitis. I still have spasm like pains around the top half of my abdomen that are reminiscent of pancreatitis. I have chronic osteo and autoimmune arthritis. It's sometimes very difficult to separate which symptom belongs to which autoimmune problem, especially as I'm doing it on my own - thank goodness for Healthunlocked!
Sorry for rambling. Did I mention I have brain fog and lack of focus?! I'm a teacher and an academic, so this isn't ideal.
I know exactly what you mean marlathome, having had to fight for thyroid treatment and my own family PA/B12def. In both cases, I had to diagnose and eventually dose myself to regain anywhere near optimum health.....
Thiroyd NDT sorted out my thyroid problems as I was able to fine tune medication based on symptoms (my surgery stopped testing me when they knew this and blame overdosing on any other problem I may have!). GPs are generally seventeen years behind latest research and, even the good ones seem reluctant to listen if you broach new information in latest research papers 🤔☹️
PA/B12def. is very subtle and creeps up slowly over the years. The fact that, like me, you've had many bad digestive problems, together with other autoimmune diseases, low folate, etc. seems to suggest it's highly likely you have an absorption problem.
Personally, after a lot of reading and research, I decided to self inject B12, as controlling B12 symptoms with sublingual lozenges, sprays etc. only worked for a short while. In hindsight, I wish I'd decided to SI earlier and have never ever regretted taking matters into my own hands.
Stress in dealing with intransigent medics does not help at all and, with a demanding job, you need to deal with the neurological symptoms (brain fog, lack of focus, extreme fatigue, lack of sensation, etc.) without delay as outlined in BNF and UKNEQAS !
You probably already know that you cannot overdose and, if you need to rule out other causes, you could always ask to see a neurologist or gastroenterologist?
PS. Martyn Hooper, chairman of the PAS, was a lecturer and academic, who had to give this up - his latest book is very informative about the unreliability of the B12 serum test and connections with metaplastic autoimmune gastritis and other autoimmune disease.
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