B12

[Hotpool23]

Blood tests

[wedgewood]

Sorry , the photo is not clear enough.

[Sleepybunny]

Hi,

Really sorry but I can't read the numbers.

Might be better to type out results.

I've assumed you're in UK.

Results that might be particularly relevant to B12 deficiency include

Serum B12 (also known as Total B12

Folate

Ferritin and other iron tests

Full Blood Count (also known as Complete Blood Count)

Active B12 (also known as Holotranscobalamin/HoloTC)

Homocysteine

MMA

Any test results for conditions that can lead to B12 deficiency eg

PA (Pernicious Anaemia) tests

pernicious-anaemia-society....

Coeliac disease tests

nice.org.uk/guidance/ng20/c...

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Take care when posting results not to include info that could identify you or any health professional to protect privacy.

I left detailed replies in the threads I've linked to below with lots of B12 info eg symptoms and causes of B12 deficiency, B12 books, B12 websites, B12 articles and guidelines and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered for years from unrecognised B12 deficiency.

[Hotpool23 in reply to Sleepybunny]

Is this any better?

[Hotpool23 in reply to Sleepybunny]

Hopefully you can see it

[Sleepybunny in reply to Hotpool23]

There is an exclamation mark next to the Full Blood Count results. This means that something in FBC is out of range. Looks like the MCH result is above range but struggling to see result clearly.

Above range MCH can be associated with macrocytosis (enlarged red blood cells). Macrocytosis can be associated with B12 deficiency and Folate deficiency and may have other causes.

Blood tests linked to B12 and folate deficiency

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

[Hotpool23 in reply to Sleepybunny]

...

[Sleepybunny in reply to Hotpool23]

The serum Gamma GT level is above range I think (difficult to see clearly).There is a note next to Liver Panel saying it is satisfactory.

Have you asked GP about this? They may want to do this test again in future.

Link about GGT test

labtestsonline.org.uk/tests...

[Hotpool23 in reply to Sleepybunny]

..

[Nackapan]

To me it looks as though your b12 is low as only just into range Your folate and your vitamin D low. They usually go together

B12 treatment shoukd start if you have symtoms first.

How is your diet?

If dietary b12 tabletsshould suffice.

Always treat b12 before taking folic acid.

Your doctor shoukd prescribe

loading doses of vit D.

Low vit D seens to start

The chain of not being able to absorb enough b12 in the diet.

I read about it recently.

J had very low vit D first.

I csnt sed ferritin

Shoukd be part of the iron panel

What are your sympyons?

How do you feel?

[Gambit62 Administrator]

thanks for reposting in sections.your B12 is in range but as the serum B12 test is only accurate to 20% it could really be below range as the result is within 20% of the bottom of the scale.

Having a folate absorption problem makes it more likely you also have a folate absorption problem as the two are both absorbed in the terminal ileum

You don't mentionsymptoms - and it is a shame that the comments from the lab don't refer to the accuracy of the test and the need to evaluate symptoms.

You do have signs of macrocytosis - with MCHC being slightly off the top of the range - your blood cells are slightly rounder than the norm.

You also don't say what tablets you have been given. It also looked as if you could be vitamin D deficient.

If you have 5g folate then I suggest you go back to the doctor and point them at the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which can be found here

onlinelibrary.wiley.com/sha...

these cover - the high probability of a B`2 absorption problem if there is a folate deficiency, the need to evaluate symptoms not test results - the accuracy of the serum B12 test and the importance of treating a B12 deficiency before a folate deficiency if both are present - though this only really means giving an injection before starting folate tablets.

[Hotpool23 in reply to Gambit62]

Hi sorry for late reply. Doctor has given Cyanocobalamin 50mcg x2 a day and vit D3 500mcg. Hux20,000 is cholecalciferol. He gave these just last week. Gp was to do another blood test on Friday gone but this didn't happen as he seemed to do only for BNP for another referral for me to see a cardiologist as his last referral went through blank and he never done the bloods they had requested. However this says alot for my Gp.

My symptoms are burning feet shins,hair loss,numbness and tingling in hands fatigue painful joints. I have fibromyalgia diagnosed last December .

Hypothyroidism 2.5 yrs ago.

[Gambit62 Administrator in reply to Hotpool23]

is your hypothyroidism auto-immune? There is a very high probability of also developing PA if you have hashimotos.Did your GP ask about your diet, ie confirm that you don't eat meat/fish/dairy/eggs or eat very little of these foods. If you do eat these foods then the deficiency isn't going to be dietary and the tablets you are being given are the dose to treat a dietary deficiency not an absorption problem.

Whilst high dose oral can be effective for maintenance in some people it will be slow in raising your levels and as some of your symptoms are neurological you should really be started on injections - more in the guidelines in my earlier response.

[Hotpool23 in reply to Gambit62]

Hi gp didn't mention my diet but I don't eat fish red meat or eggs I do have diary but not much.

[Gambit62 Administrator in reply to Hotpool23]

Please note that this forum is for absorption problems. The treatment of a dietary deficiency is very different. The tablets you have are sufficient for the treatment of a dietary deficiency.On the other hand being vegan/vegetarian doesn't rule out an absorption problem.

Suggest you see what the next blood test shows.

[Gambit62 Administrator in reply to Hotpool23]

the symptoms of B12 deficiency and hypothyroidism are very similar. Being hypothyroid - whether auto-immune or not - can lead to slow gut transit and have a knock on affect on absorption of vitamins and minerals. I really hope that you manage to get the dosage resolved - I was suicidal on 25mcg and pretty dead on 50 mcg so know how awful being untreated can be. What does your GP say when you mention being on 125mcg or are they one of the many that blindly goes by TSH without asking the patient how they are? Hope you are getting support on the TUK forum.

[Hotpool23 in reply to Gambit62]

Yes getting support from T/UK gp has just increased to 50mcg last week bloods to be repeated 6/8 weeks hopefully he'll keep increasing dosage I've asked to be referred to Endocrinologist so hopefully he's now taking notice as he's had me on 25mcg for 2.5yrs and has never bothered to do my bloods or look into my wellbeing at all until I found info from T/UK which has put me onto this path and now that I have found a little knowledge I'm trying to get gp to understand. Thanks also for yr help as I've been clueless and yes he's been telling me all is and has been normal now I know different I'm challenging and he doesn't like it.

[Gambit62 Administrator in reply to Hotpool23]

I unilaterally upped my doses of levo and then told the GP about it - using increments of 25mcg because I just didn't have the right relationship with GPs/was getting the wrong messages from receptionists. It is an option but is a last resort option so I really hope you can get your GP to work with you

[Hotpool23 in reply to Gambit62]

Thanks I hope so as I've not felt well for a very long time I can but try to give gp the benefit of the doubt 😊

[Hotpool23 in reply to Gambit62]

Hi I'm not sure if autoimmune as need to be asking my gp all I know is I should be on 125mcg levothyroxine now on 50mcg but have been on 25mcg for 2.5yrs and am totally under medicated

[2FloorLuka in reply to Hotpool23]

Hi! You need a bump in your thyroxine. Your FT4 is near the bottom range and it should be at least close to 16 (half range). In my non-medical opinion you have all classic signs of PA: macrocytosis, low b12, low b9 (folate), low vitamin d. Iron stores (ferritin) are higher than what we usually see... are you on Iron supplements?All your symptoms sound very familiar and i really, really, think that once you start injections that fibromyalgia diagnosis is going to be reviewed.

Fibro, in many cases, is a lame diagnosis. When you have a group of symptoms that doctors can't find the cause, they use this label. There is no specific test so its very effective. You go home and just accept that feeling like trash is part of the disease.

I am really glad you found us and I hope that B12 injections + folate are going to do the magic and make you feel like your old self. ((Hugs))

[Sleepybunny]

Your B12 result is within normal range but probably only just (I can't see the referenc e range).

Do you have symptoms consistent with B12 deficiency?

If yes, UK guidelines suggest patients should be treated even if B12 result is within normal range.

It's important when folate treatment is given that any co-existing B12 deficiency is also treated. Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA?

Testing for PA

pernicious-anaemia-society....

For coeliac disease?

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Low dose cyanocobalamin 50 mcg is sometimes prescribed for dietary deficiency.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

Severe dietary deficiency is normally treated with B12 injections.

There are moves across UK to put more people onto high dose cyanocobalamin 1000 mcg tablets as an alternative to B12 injections. Some forum members report that treatment with high dose cyanocobalamin tablets is ineffective although some manage on oral treatment.

BNF Hydroxycobalamin

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

BNF guidance changed a few years ago and it's possible that some UK GPs may not be aware of this.

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK is likely to have it's own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the B12 deficiency guidelines for your CCG/Health Board if you're in UK.

Worth knowing what you are up against locally as some local guidelines are unhelpful.

Some local guidelines have been posted on the forum. Try a search of forum posts with term "local guidelines" or "name of your CCG/Health Board" or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of or link to local B12 deficiency guidelines.

I hope you are not in the UK areas discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/blog/202...

PAS website has lots of useful leaflets/articles that some PAS members print off for their GPs.

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Local MP may be worth talking to if struggling to get adequate B12 deficiency treatment.

Too many UK GPs and other health professionals lack a good understanding of B12 deficiency in my personal opinion.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Article - Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

There's more info in my replies in links to other threads at bottom of my first response on this thread.