B12 issues or more??? thanks

Hi, Male United Kingdom B12 twice tested NHS level once was 304 other time was 340 they say my iron levels were Normal I have a History also of a previous Doctor putting me on Ferritin including folic acid but no B12 & now not on anything at all I

still do not know Why I was put on them in the first place, to begin with...The B12 Range was 130-900? It is my understanding in Canada lowest under 550 is B12 deficiency & I grew up in North America came back here a few years back...I have

also a History 24-hour low a.m. Cortisol was told I do not have a thyroid issue or Addison's those they say were ruled out entirely...I am also Low on blood plasma test for Creatinine once 79 other time 76 & no explanation is ever given range here was

(80-115) on NHS...I have an abnormal Heart ultrasound done Grade 1 Diastolic Dysfunction & History of Syncope 80/30 tilt table test possible Ehlers Danlos Syndrome type 3 but have not been evaluated ever by any Genetic Doctor to rule

out Vascular or even new type EDS IX metabolic Copper deficiency which I plan on doing myself in June at a Private lab in the UK plasma Copper testing...I am only offered antidepressants which I will not take I am not Depressed & I refuse any

suggestions of CBT, I Pretty well tell them where to stick that idea...Any ideas or suggestions I have so many symptoms & what symptoms do I not have...I have decided if I need B12 then I will inject myself I no longer rely on Doctors & I will be

going Private on all future blood testings...Does anyone think I am Anemic or B12 deficient my Mother Died from a Heart attack as a result of what they said Alzheimer's which I doubt very much she had...My Father Died from Bowel

Cancer tumor his Father 'sudden death' Heart attack at 46 & he was healthy never Sick strong as an Ox this is why I think Vascular EDS 'VEDS' also I have heard of (HFI) hereditary fructose intolerance in EDS 3 as well I have not been tested...I have History of internal bleeding my Father did as well I

am Negative on blood for Celiac I have a history also fractured neck whiplash accident high pressure over 500+ LP settled to 370 given 80 mg Prednisone & also injured lower back! Could I be undiagnosed Intracranial Hypotension leaking spinal

fluids Spontaneous? Last, any good Doctors I could go see in Southampton, UK who is open to further testing or ideas my Doctor does no testing on me now at all Thanks so very much Sorry about the long post

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  • Hi Aidan_what is your diet like?

    To prevent a vitamin B12 deficiency, take a vitamin supplement or incorporate foods high in vitamin B12, such as beef, liver, seafood, fish, cheese and eggs, into your diet.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance

    Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts,, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk

    I'm not a medically trained person but there are others on here who will be able to give you good advice

  • thanks clivealive, I do eat lots of these foods mentioned but some I avoid entirely until I am fully tested for (HFI) hereditary fructose intolerance. With regards to Brewers Yeast I would drink this daily prior to becoming Sick it was a major part of my Boxing diet as well I no longer eat any Sugar or Fruits, fructose except pure Glucose Powder. I will write these foods down you have mentioned. All the best & thank u :)

  • Hi,

    Are you symptomatic for B12 deficiency?

    pernicious-anaemia-society.... see PAS checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    B12 websites above have lots of info about B12 deficiency. PAS website and B12 deficiency info website have blogs on B12 issues.

    In UK, the "BSH Cobalamin and Folate guidelines" make it clear that patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether serum b12 is low or within range.

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH cobalamin guidelines.

    stichtingb12tekort.nl/weten...

    IFA test can help to diagnose Pernicious Anaemia (PA) but is not always reliable and it is still possible to have PA even with a negative result in IFA test (called Antibody Negative Pernicioius Anaemia).

    Other B12 info

    1) Pinned posts on this forum. I found fbirder 's summary of b12 documents useful. link to summary in third pinned post

    2) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. He has written two other books about PA/B12 deficiency. I also found his book "Living with pernicious anaemia and Vitamin b12 deficiency" useful as it has several case studies. I could recognise aspects of my experience in some of the case studies.

    3) Book "Could it be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    4) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    5) BNF Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    I was highly symptomatic for b12 deficiency for many years with levels in 300s and 400sng/L

    I've written very detailed replies in past but too tired today. if you search for them there may be some useful info.

    I am not medically trained, just someone who has spent years trying to find answers to my ill health.

    Most important thing I learned.....

    was to always get copies of all my blood test results. I learnt to do this after being told everything was normal and then finding abnormal or borderline results on the copies.

  • thank u Sleepy Bunny Yes, I have lots of B12 symptoms & I will start looking at all of the info sent :) appreciated lots

  • You don't say what units were used for your tests - there are two sets of units that can be used and it is important to know which was being used as it affects ranges - so also useful to have those quoted when you give results.

    Serum B12 is a difficult test to interpret - people vary so much in whether they are healthy with a particular serum level that used as a single marker the B12 serum test will miss 25% of people who are B12 deficient ... but will also pick up 5% who aren't.

    Please bear in mind that HU forums are hear to support people not to provide diagnoses and are no substitute for good quality professional medical advice.

    Unfortunately your symptoms could probably be the result of a number of conditions. The history from Canada would probably help with trying to track things down but may be difficult to get that.

  • thank you Gambit62 for your response I was not sure about units but I will now look at these tests again, this is all on the list ''Serum vitamin B12'' 304 ng/L

    B12 160 ng/L: B12 deficiency excluded

    B12 130 -160 ng/L: indeterminate value.

    Deficiency likely if macrocytosis

    +/- intrinsic factor antibody

    B12 130 ng/L: consistent with B12 deficiency

    *same above on the 340 ng/L test result, for B12 both done here in Southampton General Hospital UK

    Also, Glucose always comes back at 3.7 below minimum range 4.00

    TSH was done in UK 237 Normal & they say Thyroid Normal do not see any reverse T3 done which NHS usually will not do...Vitamin D3 ok but was raised by supplements to 900 ease back off D3 now. Lyme disease tests inconclusive 'always is in the UK'

    Neg. HIV Neg. Hep C Neg. Hep B but had years ago low CD4 came back at 394.

    They ran also Tryptase it came back at 10 Normal Range to rule out Systemic Mastocytosis...History also Chronic Fatigue Syndrome/Fibro/Syncope/(POTS?like symptoms & severe tachycardia. The rheumatologist I saw says EDS 3 but

    again no diagnostic test for Hypermobility some say they can be wrong with this diagnosis as well?...Brain Spect Scan Montreal was abnormal decrease uptake left temporal lobes, parietal lobes & basal ganglia...MRI read as Normal in Montreal,

    then a Neurologist in Miami said it was not Normal enlarged ventricles & meninges he requested Emergency lumbar puncture where they found high pressure. MRI was done in Southampton Brain/Spine with Contrast 'reacted very badly' read as

    Normal??? I have seen countless People now with all above diagnosis now told they have Spontaneous Spinal Fluid Leaks/Tears & missed on MRI's consistently. Another name used is 'Intracranial Hypotension' Dr. Ian Carroll Stanford is finding this now... thanks :)

  • Despite the notes on the test 340ng/L is actually in the indeterminate zone.

    As in earlier response serum B12 range is going to miss 25% of people who are B12 deficient but if used as a single marker (eg no evaluation of symptoms) is also going to pick up 5% of people who aren't deficient and report that they are deficient.

    There are a couple of other markers - homocysteine and MMA - if you don't have problems with folate then either but if folate is low MMA would be the better test - these look at nasties that build up if your cells don't have enough B12 to recycle them to useful building blocks.

  • ok thank you, I will try to see if any of those tests were done in the past

  • Checked for those blood tests you mentioned MMA or homocysteine do not see any results I did see though the Plasma Ferritin test was 52 Range is 23.9 - 336 someone had said 95 or higher is best? Follicle Stimulation Hormone level (FSH) was 4.5 iu/L Range (1.3 - 19.3 iu/L)

  • ranges for ferritin can be affected by other conditions - eg ranges where patients with thyroid conditions seem to be higher but thats about 30 rather than50 units above the bottom of the range.

    Homocysteine and MMA aren't done as standard tests - homocysteine generally only done in hospitals.

  • Sorry, read your Post again you mention 'indeterminate zone' what do you mean? I am going to order today from Europe Germany the B12 injections & I wanna start injecting & is there certain vials I should order & the needles do I inject deep or

    just under my skin? A size of needles & how much B12 in vials? I also want to later get outside testing away from UK labs I thought Canada/USA ship it from the UK? I wanted in the meantime to buy some oral B12 but I am scared of sucrose &

    fructose in the case of (HFI) hereditary fructose intolerance. My Doctor already took me off sucrose fructose etc. I would buy pills if I knew they had none of these ingredients even buy folic acid & an iron natural supplement I have even had

    serious reactions from Pure Vitamin C & do not know why either my stomach rejects it entirely even in small doses

  • indeterminate is sometimes called grey zone - probably more often grey zone - where it's not really possible to draw any real conclusion from the test result on its own.

    If you suffer from allergies then you really need to make sure that you are under medical supervision when you inject - and you can do either IM (deep) or subQ - though in UK injections are generally done IM.

    Really not sure what the advantage would be of using a US or Canadian lab over a UK lab.

  • ok thanks

  • Your whiplash injury could have caused a Pituitary/Thyroid issue. Sorry do not have reference to hand - but have seen it mentioned on the Thyroid UK Forum. In the case of Central Hypothyroidism the TSH - FT4 and FT3 all test low in range. In Primary Hypothyroidism the TSH is high in range and the FT4 and FT3 usually low.

    Have you had the correct thyroid screening done - TSH - FT4 - FT3 and the anti-bodies Anti-TPO and Tg. Almost impossible to have all these correctly done on the NHS but there are Home Testing Kits available to be sent to your home by several companies - see below.

    thyroiduk.org.uk/tuk/testin...

    Ferritin - folate - B12 - VitD are nearly always low in range when Hypo.

    Did you mean a TSH result of 2.37 rather than 237 ? The TSH in healthy people is around 2. What time did you have the test - and was it fasting ?

  • Yes Marz, 2.37 TSH my Pituitary was checked they also did multiple ACTH tests they say it functions well I do have a small Adenoma of 4mm on pituitary but they say it functions fine & was told I could have been Born with the tumor but Endocrinologist did say no Addison's or other pituitary illness they did countless thorough tests I will look into links you posted thanks so much I know I have serious issues with foods so I need to again start serious eliminations & get some private tests & home kits run & look more into better thyroid with reverse T3 thanks for links sent appreciated

  • the test for TSH was fasting & other times after breakfast around 11 a.m. some with food some without they said Normal it was done also in Endocrinology countless times...

  • I also forgot to mention they refused to do a Glucagon test which is the Gold Standard test for Pituitary Hypopituitarism my ACTH was Normal but in lower ranges, I will Privately as well Pay for this procedure in time

  • Really hope you find some answers soon 😊

  • thanks, Marz hope so as well very frustrated now

  • "am Negative on blood for Celiac "

    I have read that it is possible to still have Coeliac disease even if Coeliac antibody test comes back negative. See next link for more details.

    coeliac.org.uk/coeliac-dise...

    Did you have an IgA test at same time as Coeliac antibody test?

    My understanding is that people who have IgA deficiency will not make Coeliac antibodies and may need alternative tests for Coeliac disease. more info on Coeliac UK website.

    NICE guidelines (UK guidelines) on Coeliac disease recommend having IgA test (in section 1.2.2) but I'm not sure this test is always done......

    nice.org.uk/guidance/ng20

    My personal experience is that B12 deficiency is not always as well understood amongst medics as it could be. I read as much as I could about it.

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

  • I had a test many years ago on Celiac I was sent for the blood test then by Gastro Doc it turned out Negative not sure what test it was they ran but was blood, not biopsy but he did say avoid Gluten as tests are not conclusive my Father Died from Bowel Cancer so I am concerned he likely had Celiac and/or possible (HFI) hereditary fructose intolerance as well...I will look more into Celiac & other points you mention I have a post somewhere I saw one Woman was finally diagnosed with EDS 3 & her children plus all were given Gastro biopsy for lactose sugar gluten fructose they were all Positive her Husband Negative on all tests found by a metabolic Genetic Doctor thanks

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