tests

[Darwin196]

what are the tspests for lack of b12 what do they involve how do I get them how often will I need tests what are we looking for what is treatment ?

[Technoid]

Tests for B12 deficiency and PA : pernicious-anaemia-society....

Treatment Guidelines (UK) : Treatment of cobalamin deficiency :

"Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn.... Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate 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 alternate day therapy after 3 weeks of treatment.

Patients presenting with severe anaemia may develop a transient hypokalaemia following treatment, the clinical significance of which is unknown (Carmel, 1988), and potassium replacement therapy may be considered. In patients presenting with anaemia, a reticulocyte response should be evident by 7–10 d provided the patient has adequate levels of iron and folate. If a haematological response is not achieved the initial diagnosis should be reviewed. A suboptimal response may indicate previously masked iron deficiency or presence of another co-existing cause of anaemia.

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 μg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 μg i.m. every 2 months. No further testing for cobalamin levels is required. "

from : onlinelibrary.wiley.com/doi...

[Darwin196 in reply to Technoid]

oh golly ok my test was 129 b12 don’t know if that’s good or bad they only offering me 100 microgram cyanocom Olin or whatever it’s called thanks so much

[Technoid in reply to Darwin196]

If thats a B12 serum test its very low. That's an injectable situation in my view, even if its a dietary deficiency as you need to get B12 up quickly. How long have you had the neurological symptoms?

[Darwin196 in reply to Technoid]

Taken direct from my care page about 30 years been suffering 

[Technoid in reply to Darwin196]

If you've had neurological symptoms of B12 deficiency, as listed here : b12-institute.nl/en/symptom... for over a year you would need injections ASAP to even begin to halt damage and begin the recovery journey. Has the cause of the deficiency been investigated?

[Darwin196 in reply to Technoid]

hi again I had tests for b 12 3 normal ones the other 10 abnormal is it that some normal results stopping treatment or are they just ignoring g me?

[Technoid in reply to Darwin196]

I cant really understand what you've written, sorry, I'm not sure what tests you're saying that you had. Sometimes, B12 levels are retested during treatment to see if they are back into a normal range and treatment is then stopped or reduced if they are.

This is a very poor practice and has no basis in widely accepted principles of the effective treatment of B12 deficiency. Retesting B12 following the start of treatment is both useless and counterproductive if treatment frequency is reduced enough to cause a return or exacerbation of symptoms. I hope this is not what they're doing to you because unfortunately it is sadly common

[Darwin196 in reply to Technoid]

sorry I meant I’m not being given injections but wonder if I ought to be when my blood is tested for b 12 deficiency sometimes I’ve had a result inside normal rates but mostly way below sorry

[Darwin196 in reply to Technoid]

sorry im also dyslexic so messages get muddled

[Technoid in reply to Darwin196]

No worries. My typing went downhill with this condition also. If you have neurological symptoms of B12 deficiency you should be on frequent B12 injections until no further improvement. B12 serum tests are really unreliable in terms of indicating deficiency, you can have serious neurological symptoms with normal B12 serum results. MMA and Homocysteine are more specific but there is no gold standard foolproof test for deficiency. Very few doctors understand this.

[Darwin196 in reply to Technoid]

ahhhhhhh I see ok yes I’d say severe neurological dr reckons its fibro and fnd I think that bxxxxks quite honestly so how might I go about gettin 1 of thes homo whats it tests ??please

[Technoid in reply to Darwin196]

Honestly, if your B12 serum is testing as 129, its not necessary to bring in Fibromyalgia, which adds nothing useful to the diagnosis, since severe B12 deficiency can cause most of the symptoms recognized as "fibromyalgia". If your doctor wants to cluster your B12 deficiency symptoms and give them the name of "fibromyalgia" thats fine but it does not add anything useful in terms of next steps to treat your condition, which seems from your B12 serum result to be highly likely to be due in large part to B12 deficiency. I dont know your medical history so I have no idea if other conditions are involved but the low serum test alone and your description of symptoms gives an immediate suspicion of severe B12 deficiency with neurological damage.

You can request from your doctor the specific tests mentioned below by EllaNore but the MMA test is the most specific/useful for diagnosing a deficiency.

[Darwin196 in reply to Technoid]

FND I lost all continence use of my legs I’ve worked so hard over 5 yrs to regain it I get so tired out of breath pins needles general agony in body and joints it’s hell I need some help thankyou for listening and guiding

[EllaNore]

These are tests you should request.

B12 - a simple B12 test this isn't all that reliable Because "low" is a matter opinion, and the ranges vary drastically. This is the latest range they just used for me 3 days ago. How can anyone be considered deficient with such low ranges???

Standard Levels in the US - 139 - 931 pg/mL. other ranges used in the past - 197-400 and 200-500. I was 221, so I am lucky my doctor thought that was low. But he also saw my symptoms which were very bad. Symptoms really matter and you sound like you have them.

Folate There are a number of problems that can lead to a vitamin B12 or folate deficiency. These include: pernicious anaemia – where your immune system attacks healthy cells in your stomach, preventing your body absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK

MMA - methylmalonic Acid - high levels can indicate B12 deficiency - even if B12 is not that low. This test measures the amount of methylmalonic acid (MMA) in your blood or urine. MMA is a substance made in small amounts during metabolism. Metabolism is the process of how your body changes food into energy. Vitamin B12 plays an important role in metabolism. If your body doesn't have enough vitamin B12, it will make extra amounts of MMA. High MMA levels can be a sign of a vitamin B12 deficiency. Vitamin B12 deficiency can lead to serious health problems including anemia, a condition in which your blood has a lower than normal amount of red blood cells.

IFAB - Intrinsic Factor (IF) Test - the stomach protein needed to absorb B12 - This test is often arguable with doctors. Again, if you take any kind of B12 before this test and it comes back positive, they will try and say it is a false positive or could be. This is happening to me right now. and if it was negative, I would be wondering if it was because I had already started treatment. Intrinsic factor is a protein that is produced by the parietal cells of the stomach. It binds to vitamin B12, thereby allowing absorption of the vitamin by intestinal cells. In pernicious anemia, an autoimmune disorder, autoantibodies are formed against intrinsic factor leading to its deficiency. The lack of intrinsic factor then causes malabsorption of vitamin B12 and subsequent anemia. Autoantibodies can also be formed directly against the parietal cells which similarly leads to inadequate intrinsic factor activity and vitamin B12 deficiency.

A positive IFAB means you have PA

Homocysteine - Indicator for PA - Homocysteine blood test measures the amount of homocysteine, an amino acid in the body. The test is often used to diagnose vitamin B6, B9 or B12 deficiency. People with elevated homocysteine may have a higher risk for cardiovascular disease.

[Twaddletop in reply to EllaNore]

My PA was diagnosed after a Schilling test. Don’t they use them any more EllaNore? x

[helvella in reply to Twaddletop]

They are no longer done because they relied on bovine extracts which were banned during the BSE crisis. And they have never returned to being available. Nor has there ever been the resources to develop an alternative. And the process itself is quite an overhead on the pathology team.

[Twaddletop in reply to helvella]

Thanks helvella, interesting x

[EllaNore in reply to Twaddletop]

Gosh, I did not know this answer so I am glad Helvella was able to help you. thank you!

[Darwin196 in reply to EllaNore]

lowest serum 2.3 folate

[Darwin196 in reply to EllaNore]

thanks now I understand more I hope to ask right questions when i finnaly get to see doc

[Darwin196 in reply to Darwin196]

apparently the tests you said are not allowed on nhs what would you or the panel suggest I did the Superdrug 1 but had to redo as sample heamolised thanks so much for your support Dust

[jade_s]

Is that reading of 129 serum b12 or active b12? Every test always comes with a range, i think EllaNore already gave you some examples on tbe other thread. Can you post the range? Apo,ogies if you did and i missed it.

If that's serum b12, where the range is something like 180-700 or similar, then YES IT'S VERY LOW and as everybody already explained, you would be better off with injections regardless of the cause.

[Technoid in reply to jade_s]

There was a range but the post was removed I think Jade. It was definetely a serum range.

[Darwin196 in reply to jade_s]

thanks much appriciated month till I can get appointment so doin Superdrug thing to get inj quicker something better than nothing dr said bit low nothing to worry about hasn’t monitored or checked actually 5 yrs now since it first dropped

[jade_s in reply to Darwin196]

Well done! How often will they let you get one? For neurological symptoms, guidelines say every-other-day injections until no further improvement.

[Darwin196 in reply to jade_s]

good lord really oh dear well mmm I think virtually no short term memory neurological disorder robbed me of continence and the ability to walk 5 year fight learn to regain both pain I can no longer cope with mmm no treatment or tests apart from 3 blood tests in 5 yrs and just put on cobalt tabs last month 5 mg b12 tab

[jade_s in reply to Darwin196]

I'm so sorry, they've really left you high and dry haven't they? I was in a very similar situation, completely and totally dismissed by my GP and a neurologist. I started self injecting with b12 i bought from germany, like many people here, and haven't regretted it for a single second. My arms were numb from fingertips to elbow, i had burning nerve pain everywhere else, and serious vision issues. It's taken 6 long years of daily injections, but i can say I'm nearly totally recovered.

[Darwin196 in reply to jade_s]

oh my good ness hope you better now I changed go they get 1 chance to fix it then I go rogue and do like you guys thanks so muchD

[jade_s in reply to Darwin196]

Yes much better thanks Let us know when you're ready to go rogue and we'll help Best wishes

[Darwin196 in reply to jade_s]

cheers thanks can do with help as rogue is not something I’d normally do cheers mate

[Darwin196 in reply to jade_s]

hi at what level or presentation would indicate line cal need for in j b12