Hi again Sorry it's long winded

[toonarmy]

Can anyone recommend any advice for my latest test results please, I have

An underactive thyroid and take 50mcg of levothyroxine,recent tests show thyroid behaving itself, yet I still feel awful,dizzyness off balance,restless legs, tingling, tinitus chest pains, palpations, heart racing smooth tounge, exhausted but the Drs still say I'm in range, I also take omeprazole for sliding hiitius hernia could these results still show I have a deficiency as Drs are saying it's stress?? X

[Gambit62 Administrator]

the picture above shows your GPs name and your name so you might want to redo the photo and then repost - click on the down arrow next to follow post and chose edit.

It could be B12 but there are also a lot of other things that could cause pretty much the same symptoms, such as iron deficiency but guessing that has probably been ruled out

If you have a series of B12 tests that show levels going down then that makes it easier to argue an absorption problem.

suggest you write to your GP pointing them to the BCSH guidelines on diagnosis of cobalamin and folate deficiencies and in particular

a) serum B12 isn't a gold standard test - it will miss 25% of people who are deficient if taken as a single measure

b) macrocytic anaemia isn't present in 25% of patients presenting with B12 deficiency. It is a symptom. It isn't a defining characteristic

c) recommendation is to go by symptoms and not test scores, particularly if symptoms include neurological symptoms, such as dizziness, tinnitus, pins and needles.

d) if other possibilities have been ruled out ask for a therapeutic trial of B12

[Foggyme Administrator]

Hi Toonarmy. Just a quick comment...omperazolpe can impede the absorption of vitamin B12, so it could be that your levels are falling and that you have a slowly emerging B12 deficiency.

Best keep an eye on levels to see if they continue to fall.

BSH guidelines suggest treating anything under 200 ng/L.

However, the guidelines also state that when neurological symptoms are present, treatment with B12 injections should begin immediately - even if serum B12 levels are within normal limits.

As your thyroid is well controlled and you have an identifiable cause for a potential B12 deficiency (the drugs you are taking), I suggest you re-approach your GP and ask for a therapeutic trial of B12 injections.

If your symptoms resolve, that's the answer. If not, you can investigate other potential causes for your symptoms.

Note: do you still need the PPI's? These are usually only used for short-term treatment. If the problem is B12 deficiency and it's due to the drugs, then stop these, the deficiency will resolve, and you won't need to continue with injections.

But of course, there are many other potential reasons for B12 deficiency (if this is what you prove to have), so other potential causes should be investigated too.

Currently using phone but will pop back later and post some links to further information that you may find useful.

Doctors very often misdiagnose B12 deficiency as stress, anxiety, CFS, Fibromyalgia, MS...and other things too. Do you have stress - don't know. But there's nothing very calming about having neurological symptoms. And you are taking medications are known to cause B12 deficiency. And B12 deficiency can be present even if B12 levels are 'normal'...

Leave you some links shortly...

👍

[toonarmy in reply to Foggyme]

Thank you xx

[Foggyme Administrator]

And here's some links (sorry, don't have time to sort so I've just left lots. Most only one page long...just select whatever's relevant...but they're all a really good read 😉)...

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

bnf.nice.org.uk/drug/hydrox...

(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)

nhs.uk/Conditions/Anaemia-v... (NHS Choices. B12/Folate Deficiency - Small Section on Functional B12 Deficiency)

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 – Immediate Treatment with B12 Injections)

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 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 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)

ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

👍