Hi guys. I've been directed here from the thyroid forum. I just wanted to ask what doses of vitamin b12 you'd recommend based on my results:
B12= 238 (250-750)
Folate = 29.97 (8-60)
Ferritin 55 (11-336)
My gp says my levels are fine, but after reading some of the posts on the thyroid forum, I don't think that is true.
Thanks in advance for any advice
B12 - do you have symptoms of B12 deficiency?
pernicious-anaemia-society....
B12 serum is not a good test to use as the only measure for diagnosing a B12 deficiency. It will miss 25% of people who aren't B12 deficient but pick up 5% who aren't.
know there is an overlap in symptoms with thyroid but if your thyroid is under control and you aren't symptomatic then I wouldn't supplement - or if you do then use the sort of doses that you get in a multi-vit from chemist or supermarket.
If you are symptomatic (regardless of whether your thyroid is under control then look at tests that can clarify if B12 is a problem - MMA or homocysteine which will be raised if your cells don't have enough B12.
Ferritin is probably okay - although there is some research that shows that people with thyroid seem to need higher levels of ferritin than normal population your ferritin looks as if it is still in the higher range.
Folate also looks okay.
Thank you
Vitamin D deficiency seem to be "flavour of the month" just lately due to it now being PC to "cover up" and use high factor sun creams. Have you had yours tested Tiredteach ?
My vitamin d was 63 nmol (50-175)
Mine was 74.9 (80 - 150nmol/L) last October and I'm now permanently prescribed 1 – Colecalciferol 800 Unit 20mcg every day. Mind you I'm 76 years old and we get less able to "produce" it as we age.
Hi Tiredteach. I'm so sorry that you're having a tough time at the moment and have been struggling to get help.
I note that you've posted on the typhoid forum and recently been diagnosed with Hashimoto's hypothyroidism. This is an autoimmune condition and once you have one autoimmune condition, you are likely to also develop others. In addition, if other members of your family have autoimmune conditions there is a higher likelihood (but no certainty) that you could also develop autoimmune conditions. Which leads me to ask...has you GP tested you for pernicious anaemia (an autoimmune condition that causes B12 deficiency)?
Your serum B12 result of 238 in the reference range 250-270 does indicate B12 deficiency. Whilst I agree with Gambit that the serum B12 is a blunt instrument when assessing B12 deficiency, in view of the Hashimoto's autoimmune diagnosis I think you should re-visit this with your GP.
I would also suggest that you do not take any B12 supplements at the moment, for several reasons:
a) taking supplements (even low dose ones) may raise you B12 level just enough to push it into the bottom of the reference range - at which point most GP's will refuse to recognise that B12 deficiency may be problem - even though it still can be. (Note: slipping into the bottom of the reference range may be counted as 'normal' but it will not give enough B12 to effect proper repair and healing if your symptoms are due to B12 deficiency - see the first link included at the end of this reply) 😀.
b) taking B12 supplements can skew further tests that your GP may wish to do
c) nudging your B12 into range and the potential for skewing further tests may mean that you struggle to get an accurate diagnosis, and hence appropriate treatment.
d) the Pernicious Anameia Society recommend that no B12 supplements are taken prior to all investigations being completed.
So...I suggest you go back to your GP, point out that your results do show that you are B12 deficient, explain that you have one autoimmune condition (Hashimoto's), that people with Hashimoto's quite often suffer from B12 deficiency - which can be caused by pernicious anaemia (but there are, of course, other causes of B12 deficiency too - but nevertheless, the treatment is the same - B12 (usually injections, since most cases of B12 deficiency are due to some kind of absorption problem, rather than dietary issues).
Ask your GP to test your anti-IF antibodies (the test for pernicious anaemia - PA). This test returns 40-60% false negative results so keep in mind that you can test negative and still have PA - your GP might not know this.
Again, as gambit points out, there are a lot of cross-over symptoms between hypothyroid symptoms and those of B12 deficiency and it might be quite difficult to sort out what symptoms are potentially due to each, especially as you are early in the treatment stage for Hashimoto's.
So...do ask your GP for the MMA and homocysteine test (MMA the better one to get if your GP is reluctant to do both). Some GP's have never heard of the MMA test. If this is the case, then your GP can ring the haematology department and they will be able to advise where to get the test done. If the MMA or homocysteine is raised, then this is definite 'proof' that you have B12 deficiency and some of your symptoms are due to B12 deficiency (rather that being hypothyroid). A good way to distinguish...and will make it easier for you to access B12 injections from your GP (if you need them).
In short...if I was you I'd be asking my GP to treat me for B12 deficiency (as per your serum B12 results) - with B12 injections (see the BNF link below - and other documents - for treatment details). This is especially important if you have neurological symptoms - waiting to see if these may or may note be due to Hashimoto's could be counter productive and potentially allow irreversible neurological damage to occur - so why take the risk 😣.
Note: despite what some GP's think, B12 is not harmful, toxic, or addictive - more information about that in th links below.
A note on treatment: if you have the neurological symptoms sometimes associated with B12 deficiency, then you will need a more intensive B12 treatment regime (after the six loading doses, injections every other day until no further improvement). Again, many GP's do not know about this treatment regime. So...
GP's are not usually very well informed about B12 deficiency so I'm going to post some links below that will give you details about B12 deficiency, pernicious anaemia, diagnostic protocols, treatment guidelines and 'myth' busting information, so that you can deal with some of the stranger notions that some GP's seem to have about B12 deficiency, it's diagnosis and treatment...just in case your GP is one of those 😉.
Don't be daunted by the number of links...most of the links are to one page documents and the BSCH treatment guidelines, which are a bit longer, have useful summary sections if the whole thing looks a bit daunting. Have to say though, they're all very interesting and will give you lots of useful information that will help you to understand B12 deficiency and, more importantly, show you what your GP should be doing to try and help you.
So...here are the links...please post again if you have more questions or perhaps need help with how to,approach your GP...and good luck...let us know how it goes 👍
The links:
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)
👍
Hi Tiredteach,
Who gets PA and B12 Deficiency?
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Unhappy with treatment?
Link about writing letters to GP about B12 Deficiency
Point 5 is about people who are symptomatic but have normal range B12
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment
B12 blogs
Both have interesting stories about B12 issues
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.
Martyn Hooper is the chair of PAS. This book is up to date with current UK B12 guidelines. I gave a copy to my GPs. He has written two other books about PA and B12 deficiency.
I also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" helpful as I could recognise aspects of my experience in some of the case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 with lots of case studies.
Other B12 info
BSH Cobalamin and Folate Guidelines
Foggyme has given a link to this above. I'd recommend reading the whole document if you're able to. Some UK GPs may not be aware of this document. I gave my Gps a copy.
The flowchart from the BSH Cobalamin and Folate Guidelines (4th link in Foggyme's list) makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether B12 is low or within range.
Flowchart also mentions Antibody Negative Pernicious Anaemia (PA where IFA test result is negative).
BMJ B12 article
Emphasises the need to treat people who are symptomatic for B12 deficiency , to prevent neurological damage, even if blood tests do not show an obvious deficiency.
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response
Pinned posts on forum
Lots of b12 info in pinned posts. I found fbirder 's summary of mainly UK b12 documents helpful to read. Link to summary in third pinned post.
I am not medically trained, just a person who has struggled to get a diagnosis.
You are at higher risk of B12/PA with autoimmune thyroid disease, serum B12 test shows below range and ferritin is also low, yet GP thinks all is fine !?😳 I despair - when are GPs going to read latest research, BCSH and NICE guidelines and listen to their patients' symptoms......
To add to Foggyme's links above (sorry there is so much reading to add to your load). From the experience of many on this forum, your own research is essential or you can easily be fobbed off, with eventual permanent neurological damage if not treated early and adequately:
Excellent research paper recent posted by 'Diogenes' ,(John Midgley on the TUK forum):
journal.frontiersin.org/art...
"Hashimoto’s thyroiditis (HT) is the most frequent autoimmune disease, and it has been reported to be associated with gastric disorders in 10–40% of patients while about 40% of patients with autoimmune gastritis also present HT. Some intriguing similarities have been described about the pathogenic mechanism of these two disorders, involving a complex interaction among genetic, embryological, immunologic, and environmental factors. CAG is characterized by a partial or total disappearance of parietal cells implying the impairment of both hydrochloric acid and intrinsic factor production. The clinical outcome of this gastric damage is the occurrence of a hypochlorhydric-dependent iron-deficiency anemia, followed by pernicious anemia concomitant with the progression to a severe gastric atrophy"
"(3). e 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 (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first to iron-deficiency anemia, followed by PA"
cmim.org/pdf2014/funcion.ph...
Latest BMJ research document, with useful summary if GP refuses to read this whole document or any of the above guidelines.
Very best wishes for early and adequate treatment of thyroid and B12 deficiency, TiredTeach.
This was fascinating, very interested that they recommend the use of softgel or liquid thyroxine for those of us with gastric issues as it is better absorbed. No one has ever offered me that option.
I thought the same MariLiz and wondering whether liquid thyroxine is widely available?
Hugely significant research and I believe adds to Dr Kharrazian's (leading neurologist and Harvard researcher), who explains in his first book how a vulnerable thyroid can be one sign of autoimmune/gut/brain problems.
It explains so much about my own family history of Hashimoto's Thyroid, leading to B12/PA. I'm g/free and take NDT but, following years of gastric problems and two viruses earlier in the year, now self inject B12 for neurogical symptoms.
Thank you all so much for the advice. I'll talk to my gp
Would be interested in his reaction to all the knowledge you will have 
Hi again,
" I'll talk to my gp"
Things said in a consultation can sometimes be forgotten and appts are so short so may not be enough time to say everything which is why on some occasions in past I have written letters prior to appt eg containing symptoms (especially any neuro symptoms), extracts from B12 documents and blood test results.
If you have a lot to talk about with GP, may be worth asking for a double appt.
Have you had a recent full blood count (FBC)? There can be useful clues on a FBC test as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities.
Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis).
A person with both low iron and low folate/low B12 may appear to have a normal MCV (mean corpuscular volume) on the FBC test because the effects of low iron on red blood cells can mask effects of low folate/low B12.
Info on macrocytosis and FBC
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
Hi again,
" I'll talk to my gp"
Things said in a consultation can sometimes be forgotten and appts are so short so may not be enough time to say everything which is why on some occasions in past I have written letters prior to appt eg containing symptoms (especially any neuro symptoms), extracts from B12 documents and blood test results.
If you have a lot to talk about with GP, may be worth asking for a double appt.
Have you had a recent full blood count (FBC)? There can be useful clues on a FBC test as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities.
Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis).
A person with both low iron and low folate/low B12 may appear to have a normal MCV (mean corpuscular volume) on the FBC test because the effects of low iron on red blood cells can mask effects of low folate/low B12.
Info on macrocytosis and FBC
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
labtestsonline.org.uk/under...
Coeliac disease
I read that having one auto-immune condition increases the chance of another one developing.
As Coeliac disease can affect the gut it can lead to absorption difficulties and therefore to B12 deficiency plus others.
It is possible to have Coeliac disease even if standard Coeliac antibody test is negative. See following link.
coeliac.org.uk/coeliac-dise...
People with IgA deficiency may need alternative tests for Coeliac disease.
Ok..all this information is so overwhelming. I'm new to all this, as recently diagnosed with hashimotos. Previously, I've just accepted whatever the gp said. However I now know that I must be more assertive.
I have had a full blood count, but not really sure what it all means. I'd send a screenshot but I'm not sure how.
Monocytes 0.4 (0.2-1.5)
Lymphocytes 1.5 (1-4.8)
Platelet 295 (140-400)
Basophil 0 (0-0.2)
Eosinophil 0.2 (0-0.5)
Red blood cells 4.91 (3.8-5.8)
Haemoglobin 14.5 (11.5-16.5)
Total white 5 (4-11)
Mean cell haemoglobin 29.5 (27-33)
Haematicrir 0.43 (0.37-0.47)
Mean cell volume 86.8 (80-98)
Does any of this make sense to any of you?
Hi Tiredteach.
These blood results all look okay.
There's no evidence of macrocyclic anaemia - the large red blood cells than can - but not always - be associated with both B12 and folate deficiency.
And the 'not always' is significant here. Your GP will probably be looking for evidence of macrocytic anaemia to confirm a diagnosis of B12 deficiency. He/she may not be aware that 30% of people with B12 deficiency and assocIted neurological symptoms DO NOT have macrocytic anaemia (this tends to appear at the later stages of PA/B12 deficiency). So...your GP should not discount B12 deficiency simply because you do not have macrocytic anaemia - especially in view of the fact that you have a serum B12 result that shows deficiency and, more importantly, you have the symptoms of B12 deficiency - including neurological symptoms. (More information about this in the second to last link I gave you in my reply above - good idea to print this and take it along to,show to your GP).
Also - print the UKNEQAS B12 Treatment Alert (also in the links above). This states that where neurological symptoms are present treatment with B12 injections should begin immediately to,prevent potentially irreversible neurological damage - even if B12 levels are in the 'normal' reference range - and yours are below! Your GP should treat you.
On another note - I only noticed your blood results by accident when I checked to see what further responses you'd had to your original post. When something is added through the reply button at the very top of your post, the only people who see it are people who read the whole string - it is not seen by the whole forum and nobody who replied in the string is notified that there is another response or reply (unless they've followed the post).
If you want to reply to someone who has responded to you, then press the reply button at the bottom of that particular reply - the person that has responded will then receive a notification and b.e able to respond again accordingly 😉.
If you want to add new information or questions that you want the whole forum to see, always better to start a new post - that way you'll get a better response (more answers) 😀.
Anyway, good luck with your return visit to GP - post again if your GP still will not treat you and we can offer more advice about that.
Let us know how you get on 👍
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