I have many of the B12 deficiency symptoms. I was tested this time last year but was fed the usual "labs are normal " routine - plus my thyroid results were low so the doctor blamed all my symptoms on that and raised my thyroxine from 150 to 175mcgs. At the same time my blood pressure was very high and I got prescribed meds for that too - Ramipril 5 mgs.
Anyway,disatisfied and scared, I started taking Thiroyd in early October - my GP does not know this. I am now on 2.5 grains daily and will be getting my first thyroid function blood test since ditching Levo done by the practice nurse on Monday 4th Jan. I still take Ramipril for my blood pressure and that will also be tested at the same time.
I know it's early days on Thiroyd but I still feel like cr*p. I am saving to have the saliva test for cortisol levels done as soon as I can - but if I get the B12 tests done again, how do I get beyond the inevitable "your blood work is normal" scenario?
Two complicating matters though! I supplement with Nutri Advanced B Complex nearly every day (two tablets) and Nutri Advanced Adrenal Extra every other day (one tablet). When extremely fatigued, I wear a 24hr B12 high strength patch - maybe once a month. Surely these supplements would affect a blood test for B12? Thing is, I doubt I would be able to function if I stopped my supplements? Opinions about what to do from here would be greatly appreciated. Thanks in advance! Michelle
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Hi! I'll be very interested to hear replies to this as also to have bloods done on Wednesday and taking supplements galore! i wondered if i listed them and handed to the doc she could send them with samples to lab to inform them. However, Call me cynical with regards NHS testing but i am not sure they will do such a thing as to substract supplemt levels to give true indication of actual levels. Other lans seem to. I dont famcy being totally diafunctionsl without mine but may have to go cold turkey for 2/3 days 😰.! Good luck with your tests.
Always difficult when GP's declare results normal. Well to begin with normal is an opinion and not a result. What they mean is you are in range - but WHERE you are in the range is key. So you need a copy of ALL your results with ranges. A legal right. B12 needs to be around 500 to prevent neurological damage and a 1000 to prevent cognitive decline. Also - only 20% of your blood test result is available to be utilised at a cellular level where it is needed.
Wearing a B12 patch will skew your results - in fact no point in having any further tests done for B12. If the result was really low then do ask the GP to investigate why. Also have additional tests done like MMA and Homocysteine. Maybe check for PA.
Also your raised blood pressure can be a symptom of something else going on in the body. Treating the symptom and not the cause is common in medicine today. How are your levels of Iron - Ferritin - Folate - VitD ? Maybe take a look at Dr Kendricks website and read some of his blogs and you will see what I mean.
It could be low iron and so your heart beats faster to increase the amount of red blood cells travelling around the bloodstream. Red cells need iron and the oxygen attaches to the iron - so low iron = low oxygen and so the heart beats faster.....simplistically put.
What are your thyroid results looking like ? Maybe your FT3 levels are not good enough and this can affect the heart. Your next blood test may reveal a lowered TSH along with FT4 and hopefully an improved FT3. Have you had your thyroid anti-bodies checked.
Sorry have not looked back to any earlier posts and good luck with your appointment.....
Hello! Guidelines state that there are no certain tests to ascertain deficiency and that symptoms should be the main indicator. Guidelines are frequently ignored for a variety of reasons including time pressures to fully research the complexity of B12 deficiency. I have resorted to self injections which many have to. Some people are okay on tablets. The charity b12d.org founded by the wonderfully caring and informed Dr Chandy (youtube.com/watch?v=Ww0dH3l... is a mine of info and support. Wishing you very well. Have cut and pasted more info about guidelines below
BCSH Guidelines on the diagnosis and treatment of B12 & Folate Deficiencies is 40 pages long! Here are some important key points made within them which may help those trying to obtain more effective treatment. Link to the BNF - 2009 at bottom of page.
SUMMARY - Page 2: The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency. In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
INTRODUCTION - Page 2/3: In the majority of situations, the recommendations inevitably rely more on clinical judgement and consensus than objective laboratory data.
COBALAMIN DEFICIENCY - Page 3: However, the majority of patients do not have such a clear cut picture. Neurological presentation (peripheral neuropathy, sub-acute combined degeneration of the cord) may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability.
Furthermore, patients with strong clinical features of cobalamin deficiency may have serum cobalamin levels which lie within the reference range. In the presence of true cobalamin deficiency, the serum folate is often normal or can be elevated. However, a low serum cobalamin level may be found in the presence of folate deficiency.
TESTS TO CONFIRM/DIAGNOSE COBALAMIN DEFICIENCY - Page 4: The absence of a raised MCV cannot be used to exclude the need for cobalamin testing since neurological impairment occurs with a normal MCV in 25% of cases.
(b) SERUM COBALAMIN - Page 4: However, it lacks the specificity and sensitivity required of a robust diagnostic test . . Some assays may give false normal results in sera with high titre anti-intrinsic factor antibodies.
(e) HOLOTRANSCOBALAMIN (HoloTC) - Page 5:. . . an immunoassay for this fraction is now available . . . However, arguments have been raised against accepting this . . . Despite this, the assay has a smaller ‘grey zone’ (uncertainty range) than serum cobalamin assays and better sensitivity and specificity characteristics.
Further studies are needed to evaluate the clinical utility of HoloTC in assessing cobalamin deficiency in a routine high output laboratory testing. It may cut down the percentage of indeterminate results, particularly in patients over the age of 65 years. There is the added advantage of use in pregnancy and in patients on oral contraceptives since the HoloTC fraction of cobalamin does not seem to be subject to the physiological drop seen in total serum cobalamin over the course of pregnancy.
it appears to be a strong candidate for future routine first line assessment of cobalamin deficiency, particularly if costs of the test become favourable.
RECOMMENDATIONS - Page 6: The report providing the result of a serum cobalamin assay should include the following:
* The interpretation of the result should be considered in relation to the clinical circumstances
* Falsely low serum cobalamin levels may be seen in the presence of folate deficiency or technical issues
* Neurological symptoms due to cobalamin deficiency may occur in the presence of a normal MCV
* Holotranscobalamin is suggested as a suitable assay for assessment of cobalamin status in a routine diagnostic laboratory in the future
(a) ANTI-INTRINSIC FACTOR ANTIBODY - Page 7:
. . . the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia.
High titre intrinsic factor antibody may interfere with assays of cobalamin, leading to a false normal serum cobalamin. Testing for intrinsic factor antibody is therefore advised in patients with strong clinical features of deficiency such as megaloblastic anaemia or sub-acute combined degeneration of the cord despite a normal serum cobalamin level. In these cases pre-treatment serum should be stored for investigation with an alternative assay (HoloTC or MMA) to confirm the presence of a severe deficiency.
RECOMMENDATIONS - Page 8: * All patients with anaemia, neuropathy or glossitis, and suspected of having pernicious anaemia, should be tested for anti-intrinsic factor antibody regardless of cobalamin levels.
* Patients found to have a low serum cobalamin level in the absence of anaemia, and who do not have food malabsorption or other causes of deficiency, should be tested for IFAB to clarify whether they have an early/latent presentation of pernicious anaemia.
C. TREATMENT OF COBALAMIN DEFICIENCY - Page 8: The BNF advises that patients presenting with neurological symptoms should receive 1000mcg on alternative days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment. No further testing for cobalamin levels is required.
RECOMMENDATIONS - Page 9: * Treatment of established cobalamin deficiency should follow the schedules in the British National Formulary. * Initial treatment with oral cobalamin may not be appropriate in pernicious anaemia, but may be considered in maintenance or correction of suboptimal levels in asymptomatic patients.
D. RECOMMENDATIONS ON CLINICAL APPROACH - Page 10: * Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin.
* Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response.
(b) BORDERLINE/NORMAL SERUM COBALAMIN (with anaemia or other symptoms) - Page 11:
RECOMMENDATION: Serum cobalamin level of greater than 148 pmol/L (200 ng/l) in the presence of a strong clinical suspicion of cobalamin deficiency should be evaluated further with MMA, tHcy or HoloTC and a trial of hydroxocobalamin given to ascertain any clinical improvement.
(h) POOR ABSORPTION DUE TO GASTROINTESTINAL . . - Page 14: Patients who have had gastric surgery have a high prevalence of cobalamin deficiency and more recently, treatments for obesity including gastric banding and gastric bypass surgery also lead to cobalamin deficiency.
‘Food-bound cobalamin malabsorption’ has been used to define a group of disorders characterised by gastric hypochlorhydria due to age-related gastric atrophy or secondary to drugs such as the proton pump inhibitors. In such conditions the cobalamin may not be separated from food protein and therefore is unavailable to the intrinsic factor. This is associated with 30-40% of cases of sub-clinical cobalamin deficiency.
The degree of this form of malabsorption can vary and the dose of oral cobalamin necessary to correct it cannot be prescriptive. Dose finding studies using 2.5μg to 1000 μg of oral cyanocobalamin have shown good response in terms of serum cobalamin using lower doses but lesser response in terms of tHcy and MMA. A pragmatic approach would suggest starting with a low dose and increasing it as necessary. Future studies should help to clarify what parameters to use in assessing replacement therapy.
Unfortunately due to his expertise and treating patients as he was taught as a junior doctor, he has had his Licence withdrawn by the Authorities. His patients are obviously devasted.
Oh, conspiracy! What is the world coming to? A doctor like the family doctors used to be (my pa was one, Indian too and qualified at Birmingham Uni and was as dedicated as Dr Chand). Guess Dr Chand showed all the others up.
Dr Skinner, Virologist, in Birmingham was another who was hounded by GMC for treating patients with clinical symptoms of hypothyroidism and prescribed (Like Dr Peatfield who resigned as he couldn't take the strain). He was a Virologist who came into the Thyroid World accidentally and people made a bee-line to him to be diagnosed. Unfortunately he died of a stroke no doubt appearing 7 times before the GMC was just too much.
An ever growing number. Remember Dr Andrew WAkefield who suggested that there is a link between the Measles vaccine, bowel disease and autism. He was accused of fraud and was chased out of the country and is presently in the US. I am learning from Dr Mercola, Suzy Cohen and pharmacist Isabelle Wentz who was a thyroid sufferer and set out to heal herself, that gut problems can be the root of many illnesses and this has to be remedied first before anybody can hope to be cured, and that goes for cancer too.
Dr Wakefield has now been proven that his research was correct and how many mothers in the UK have no-one to turn too should they suspect their child has a problem.
Valentino Bocca was given an MMR shot in 2004, at the age of 15 months. According to his parents, the change in his behavior was immediate. That same night he refused to eat, and he developed diarrhea during the night. It quickly went downhill from there. Within days he was no longer able to put a spoon to his mouth, and he spent nights crying in pain. His parents immediately suspected the vaccination, but were told this was "impossible." Valentino progressively regressed, and received the diagnosis of autism a year later.
In the final analysis, the Italian Health Ministry disagreed with the initial conclusion of the pediatrician, conceding that the vaccine was at fault.
As a result, a court in Rimini, Italy recently awarded the Bocca family a 15-year annuity totaling 174,000 Euros (just under $220,000), plus reimbursement for court costs, ruling that Valentino "has been damaged by irreversible complications due to vaccination (prophylaxis trivalent MMR)i." According to a featured article in the UK newspaper, The Independentii, about 100 similar cases are now being examined by Italian lawyers, and more cases may be brought to court.
Had not heard that news about Dr Wakefield being proved correct. Hurrah for him but as you say how awful for the parents who need him and how dreadful for the Bocca family. Good for the Italian authorities. According to an English friend who lives in Rome, the Italian authorities work in mysterious lengthy ways but thank goodness they came up trumps in this case.
Thank you. I have Just read it - very interesting and have passed it on to my friend whose daughter refuses all vaccinations for her children as she knows what Big Pharma is up to.
On coming to UK 16 years ago I was told by my new GP they dont believe in vitimins so I wouldnt be getting any and I shouldnt be taking them .. and my eltoxin and premarin medication cut down without tests.
Over the years I have come to the conclusion '' my own opinion '' NICE must be getting big bucks from the drug companies.
B12 serum test measures the total amount in blood circulation and this includes holohaptocorrin which is the inactive form of B12.
You may find it useful to have the ACTIVE B12 ( aka holotranscobalamin) test (HoloTC) as this only measures the amount of B12 that is usable at cellular level.
The test is available on the NHS at St Thomas' Hospital and requires a GP's referral but is also available from private labs (link below).
Measuring MMA (Methylmalonic Acid) and Homocysteine (tHcy) can be useful as high levels may determine low B12. A low iron level may skew serum B12 results (by altering the size of red blood cells) as will supplementing B12 by falsely elevating levels. However, I didn't stop supplementing B12 when I was tested but just took the supplementing into account.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I too have symptoms of B12 deficiency (picked up by my GP) who tested and found B12 'okay' but ferritin low. Looking further into this it seems that in my case the problem is that my ferritin is low because I am deficient in vitamin C and that this combination is producing the symptoms of B12 deficiency. (I am vegan so eat plenty of foods rich in ferritin, of course if you don't this may not apply to you).
As for test results, my surgery is difficult over this. Neither receptionists or nurses will give them out, nor allow me to read them off the screen for myself and they charge £15 for a print-out, so I have to make an appointment with GP and go in and I then ask her what the actual results are and write them all down as she reads off the screen. It is a waste of her time and mine, and no doubt irritates her as much as me, but it's the only solution I've come up with.
Also, a suggestion for if in your case your B12 while 'okay' is insufficient for you, this might help. As a vegan there is no natural dietary source of B12 so it's quite surprising that my results are pretty good. Either I've turned into a bat and create my own!!! Or, I get sufficient from Engevita yeast flakes, the fortified with B12 ones, that I love on baked potatoes and sprinked over breakfast occasionally. It's a cheaper and very nice source. If your results come back 'okay', you might like to try this.
Hope this is helpful and I do hope you soon feel uch better.
I thought all GP' s had to have on line availability for patients by now. I can see my test results ,order prescriptions,book appointments for blood and to see GP's .
thyr01d - You are entitled by law to have copies of all your test results for your own records. A small charge may be incurred for the cost of paper and print Your B12 needs to be around 1000 to prevent cognitive decline and over 500 to prevent neurological damage. So it is so important to find out what your level is. How are you treating your low Ferritin if your food is not raising it ?
I know I'm entitled to copies but £15 a time is too much for me to pay and I've checked with the NHS about this.
We all have problems with this surgery, I'm not complaining, my friend and neighbour over the road was told for years that his ever increasing headaches were migraine until a locum was here and she sent him for a scan and a brain tumour was discovered. It was untreatable and impossible to remove having spread and he died within a few weeks of that. We are all sad and very sorry for his lovely wife.
I did get my B2 levels and I am struggling with the ferritin because the GP has told me to find a vegan source of ferritin in a high enough dose, and I can't find a vegan one.
But, it seems that the problem may be inadequate vitamin C (being vegan that can impact on ferritin).
Am heading off to the New Forest, will try to remember to look at your link when back.
Sorry Marz, I'd have to go and look it up and I had better set off. It was what the GP described as normal but was not good. I'll look it up when back and email you again. Thanks for your help.
Hello dear Marz and thanks for your informed advice.
I'd also welcome advice from anyone else.
(New Forest was great)
I'll post all the blood test results from 11.12.2015, you might pick up something.
As for how to raise the ferritin I feel stuck. Saw the GP again yesterday, one month on from getting results during which time I've tried to source a vegan supplement as she instructed. Yesterday when I told her this her response was that she does not know how to source a vegan supplement but that if I buy one and take the packet in to her she will prescribe it.
Think I've said I have tried the Surgery's own pharmacy, the local Pharmacist, Health stores, supplement suppliers online, veggie society and vegan society but no luck yet. GP says I need 200 - 300 mg 3 x a day but the highest over-the-counter ferritin supplement I can find is 14 mg.
I get cravings for sprouts, lettuce and other leafy greens which is fortunate but I doubt if it's anywhere near enough.
So here are the results, range in brackets:
Ferritin 15 (12 - 300) (GP target = 50 - 75)
B12 = 438 (180-1000) remarkable mine is so high as a vegan
Folate 20+ (4+)
Vitamin D 50.9 (over 30-40)
Calcium 2.26
Magnesium (I know blood test is not helpful but GP chose to test) "good"
No inflammation
TFTs apparently rejected by lab as too soon, last done around Nov
Vit A = will not test
The vitamin D result may be misleading. I only recently learned that we need D3 in particular and that there is no non-animal source of D3. Now I'm looking out for supplemented foods but being gluten free that's a bit tricky.
Looking forward to hearing back from you and thanks again.
Also you could cook in cast iron pots - as everyone did before we went posh and unhealthy....
B12 needs to be around 1000 to prevent cognitive decline. Only 20% of your B12 result is available to be utilised at a cellular level where it is needed. Range starts at 500 in Japan !
You need about 5000IU's daily to bring up the VitD...
I find sublingual & injectable b12 much better so bypassing any gut absorption issue you may have.
B12 results will definitely be skewed by supplements - it takes up to 3m for levels to decline after supplements are stopped so prob not something you'd want to do.
I saw Dr Peatfield for my adrenal/thyroid issues & he had me take my body temps twice a day (3x a week). Have you tried this? If a thyroid issue they would probably be lowish. He recommended supporting adrenals 'before' treating thyroid' & said I'd probably need to increase to 3-4x NAX tablets before introducing thyroid meds otherwise they'd not be strong enough to start the healing. Just a thought
The only way to get past the "normal bloodwork" scenario is to demand copies of all your test results. And if they refuse, then you need to tell them to show you where their Practice Standards say they cannot divulge results. Mary Shomon discusses this in several of her articles, including "The Big Lie Your Doctor is Telling You About Thyroid Treatment" on thyroid.about.com.
Although the NHS won't do saliva cortisol, have you asked your doctor if he can do a 24-hour urine cortisol test? That won't tell you what your cortisol rhythm is, but at least you will know where you are in relation to top of range.
I had a Cortisol test via Blue Horizon and it was not a saliva test which I did query but the lab said blood test was the same. Is that true? I read on the forum that Cortisol test is saliva test. Grateful for clarification please.
A multiple-sample saliva test is one way to determine what your cortisol rhythm is. (Cortisol is supposed to start out high in the morning, then decrease and be low while you are sleeping.) You can conceivably do the same thing with multiple blood samples, but hardly anyone does that as it is expensive and inconvenient.
Allopathic doctors will do the 24-hour urine test. That test does not tell you anything about your rhythm, however, it does provide (important) information about whether the sum of your cortisol is too low or too high. Although, the range used for that test is way too broad. Keep in mind that low cortisol is very bad, but high cortisol is too; too much is catabolic.
If your lab took a single blood sample and says it is the same as a multiple-sample saliva test, it is NOT!
Hello again! Thank you all! So much incredible information - so much to digest! I have read all of your replies and am very grateful to you all for taking the time to share information and your wisdom!
Hi - does anyone inject their own b12 and indeed magnesium? If so ca n you please let me know how to gwt hold of them - thank you Jax? In preparation for my testing on wednesday.. Going to try and follow dr sarah myhills cfs/me protocol hopefully with help of gp. Gp however ready said shd knows of no patients who inject themselves and that tablet form is more than sufficient to supplement 🙄!
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