I saw GP yesterday as have loads of symptoms of b12 deficiency although with sub clinical blood results. (134) He advised continuing sublingual Vitb12 for 2 months. 1000mcg and then review. I bought cytoplan and started 14/11 before seeing GP. Initally, symptoms started to recede till I foolishly cycled for only 2k with a bit of a hill last Saturday - aerobic exercise, which has set me back. I'm seeing thyroid Endo on Tuesday next, and I wonder if it's worth asking him about b12 injections instead. Are they more effective?
Thank you!
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Caradoc1a
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Yes , B12 injections are more effective than any other sort of B12 supplementation . It’s the only supplementation that works for me ( positive Intrinsic Factor test , so P.A.)
Don’t forget that the blood serum test can be misleading . That test contains inactive B12 which can be as high as 80 % ( it varies from patient to patient )
The active B12 test is more accurate.
Also make sure you have B9
( folate in food , folic acid in tablets . It works with B12. Maybe supplement with a 400mcg folic acid tablet ( as recommended in pregnancy )
Thanks for replying. I started Thorne basic B complex 24th Nov which contains 400mcg folate. Yesterday I took additional 1000mcg methyl folate as GP said that the daily upper limit is 5mg, but felt dreadful last night. So won't do that again!!
Blimey! That might explain how awful I felt last night. Electric painful buzzing and nerve pain in legs, (this had reduced significantly the past few days) with awful headache. I took 1400mcg yesterday of methyl folate. I thought it would be fine as GP said upper limit is 5mg.
That was quite high as a dose of methylfolate. Some don't do well with extra methyl groups and some need far more. Best to start low and slow, and increase gradually depending on symptoms/reaction. The GP would have been referring to folic acid. You shouldn't need as high a dose of either folic or methylfolate.
Serum B12 334 (180-640) thyroid uk recommend above 500 at least
Serum folate 9.30 (3-20) thyroid uk recommend late teens
Serum FT3 3.9 (3.1-6.8) thyroid uk recommend upper 70% of range
Serum FT4 7 2 (11-22) thyroid uk recommend upper 80% of range
VITD test mid August 96.6 (I take 3000iu day due to osteoporosis)
My diet is good & not veggy or vegan.
I have hypothyroid after RAI for hyperthyroidism. So possible low stomach acid preventing vitb12 absorption.
I've got Endo consult on Tuesday so will discuss what next with him re thyroid medication and rest of my symptoms. I quoted NICE latest guidance to GP on subclinical vitb12 protocol but still he insisted sublingual for 2 months.
Please ignore the recommendation that serum B12 should be above 500. Not aware of any real evidence for that.
Serum B12 is a bit of a problematic test - the normal range is huge and people who don't have absorption problems will maintain their levels at the point in that range that is right for them, so difficult to say from a single test whether or not the result is a deficiency for you or not. If you have a previous test result that was significantly higher then that would be indicative of an absorption problem and a likely B12 deficiency. Unfortunately the Serum B12 test is only accurate to 20% so you are either looking at results that are more than 20% lower or a clear downward trend on several results.
Having one autoimmune disorder makes it more likely that you will have several, but I'm not clear if your thyroid issues are autoimmune.
Guidelines do recommend considering deficiency if serum B12 comes back under 500, and symptoms are consistent with B12 deficiency, but given that there is an overlap with hypothyroidism that is again, problematic, unless it is absolutely clear that your thyroid levels are under control
Some people manage okay on high dose oral but a significant proportion don't.
Injections will definitely be more effective if you are deficient as aural won't raise your levels quickly. However, establishing that you are deficient is extremely difficult based on the tests available if those are being used on their own as the basis for forming an opinion.
Were you supplementing B12 before you had your blood test ? If so the results are skewed. You need to be off all types of B12 including fortified foods and drinks for at least 4 months for an accurate blood testIt's also important to look at your results for folate ferritin and vitamin D. Do you know those results?
If you are having neurological symptoms caused by B12 deficiency sublinguals will not help
From my own experience, I know it's possible to have severe B12 deficiency with normal range serum B12 results. See blog post below...it's about being symptomatic for B12 deficiency with normal range serum B12.
2) NICE CKS Anaemia - B12 and folate deficiency - published a few years ago
There are differences in the guidance between the two NICE documents.
3) BSH Cobalamin and Folate guidelines - published 2014
4) Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. In Wales/Scotland it's Health Boards.
If you can't find the local guidelines online, best bet is probably to submit a FOI (Freedom of Information) to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
I think you might find the info in my replies on the threads below useful.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
At my worst in my late 30s/early 40s .... I had both dementia type symptoms and spinal symptoms and many other neurological symptoms....over 50 typical B12 deficiency symptoms. I only started to improve once I started B12 injections...high dose oral B12 did very little for me.
Time is of the essence in treating B12 deficiency.
Delayed or inadequate treatment can increase the risk of developing permanent neurological symptoms. In severe cases, the spinal cord may be affected.
Thank you! I have an active B12 test here at home - I wasn't sure if to use it as I'm taking the sublingual B12 at the moment and don't want to come off them. I wrote out all my symptoms and history and dated it, printed it and gave it the GP. (I included relevant parts of NICE guidance for subclinical B12 with neuropathy) If I don't get any further with Endo next week, I'll go back to GP. He didn't discuss diet or further testing, just review in 2 months.
Point 1 is about being under treated for B12 deficiency with neuro symptoms present.
NICE CKS Anaemia - B12 and folate deficiency document outlines when someone with B12 deficiency should be referred to a specialist eg neurologist/haematologist/gastro-enterologist.
NICE also have a guideline on suspected neurological conditions
Search for "NICE suspected neurological conditions" to find it.
Have you considered joining PAS (Pernicious Anaemia Society)?
PAS membership is separate to membership of this forum.
"He didn't discuss diet or further testing, just review in 2 months."
If you have neuro symptoms suggestive of B12 deficiency, 2 months is a long time to go without treatment.
If GP dismisses possibility of B12 deficiency due to you having normal range serum (total) B12 then might be worth showing them article below.
Search for "Turner SACD functional B12 deficiency".
This will show an article where a patient developed damage to their spinal cord from B12 deficiency despite their serum B12 levels being within normal range.
Lots more info in threads at bottom of my other reply.
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