If you have 1 hydrocobalomin injection for the PA every 3 months and still have the PA symptoms.Any suggest.?

[MCarina]

[nostoneunturned]

Sounds like undertreatment. Had the loading injections for first two weeks? Check out this reference, read very carefully if brain fogged, tells all, doc. perhaps not following correct British National Formulary protocol, it is all there.

b12d.org/sites/default/file...

Recommend join Pernicious Anaemia Society, learn loads:

pernicious-anaemia-society.org

[nostoneunturned]

Blast, link not OK, go to:

b12d.org

Home page, link to protocol is fifth down on left hand menu,

Sorry.

[nostoneunturned]

Folate levels must be adequate so B12 injections are used/retained, how were your folate levels, optimal is at least 3/4 up in the range, just being in range near bottom no good.

Hydrocobalamin (injection) has to be methylised before hydrocob. useful to body, adequate folate needed for this.

[MCarina in reply to nostoneunturned]

Many thanks.I have to go to my GP and check the blood test results.

I decided to take Multivitamin supplement incl.A.D,E,C,B1,B2,Niacin,B6,Ca(200mg),

Iron-14mg,for 2-3 wks and see if it works.Do you think it's a good idea?

[nostoneunturned in reply to MCarina]

You are entitled to have copy of any blood test. Just ask doc, cannot refuse you. Tests for B12 should be run before the injection is delivered. Your folate levels are vitally important, should be at least 3/4 way up range, works with B12 as explained briefly above.

The Multivit you are taking will do you no harm, probably some good, but the iron is problematical and iron/ferritin levels should be monitored by doc's blood test. Excess of iron is bad news, be very careful.

The links should give you plenty of info. but also books like "Could it be B12?" by Sally Pacholok and Jeffrey Stuart, plus "Pernicious anaemia: the forgotten illness" by Martyn Hooper are invaluable, not least to your doc who, if you still have symptoms, might not know just how to treat PA as per protocols links which quote the BNF guidelines he seems not to know about if you still have symptoms. Print out protocol from b12d.org and show him how to treat you.

I am a survivor of a doc who had not a clue re b12/PA. Levels of 167 (180-800) 28 symptoms but doc refused treatment told me had "health anxiety"(!) even when shown muscles jumping/writhing spontaneously (!!) so did it myself, still do, initially large doses sub-lingual B12, Swansons from Amazon, sub-l avoids digestive tract absorption route so successful in many cases of extant PA. Useless doc did Intrinsic Factor anti-bodies test but this test allows percentage of people slip through net, he would not do the Parietal cell ab. so under his TLC I was going steadily downhill. Some with PA use sub-l or spray B12 to boost their B12 but you have to be aware this can affect B12 tests and give doc wrong idea that they are treating correctly.

I'll dig out the links to my posts on how I did it if you like, just say.

If test shows result of say 1500 or more do not worry a bit, top of range is meaningless as body retains all it needs of B12 injection provided it has sufficient folate to retain enough B12 to process it. My levels went up beyond NHS range from 167.

Strongly recommend get folate and ferritin levels checked plus B12. Ferritin is storage iron.

[MCarina in reply to nostoneunturned]

Hi,Many thanks.I got the results as follows:

Serum Vitamin B12 1079ng/l- supposed to be max 866.00ng/l

Serum Folate 13.5ug/l

Any thoughts?

[nostoneunturned in reply to MCarina]

Range for folate necessary before comment possible. Labs can differ in the ranges used.

Folate level should not be below 3/4 of the range. Got the range?

[nostoneunturned in reply to MCarina]

When anyone is receiving injected B12 the ranges are of no consequence and should be ignored completely. When on injections no specific range is aimed at by doc so do not worry in the slightest that your B12 was 1079, that is OK, as the range is, on injections, meaningless, ie, not applicable. Many people run much higher levels when on injections and are fine. Body uses what it needs and excretes the rest via kidneys as B12 water soluble. Your doc is not trying to keep your B12 within the range given - I hope not!

How long have you been on injections? Did you have the loading doses of 6 injections in a fortnight? Called "loading doses" as their purpose is to get B12 really high, thereafter, regular B12 injections at the appropriate intervals according to the British National Formulary, which you will find quoted in the protocol in the b12d.org link already given.

Still sounds to me as though you are being treated wrongly not according to the BNF recommendations for those with neurological symptoms, i.e., one injection every alternate day UNTIL NO FURTHER IMPROVEMENT THEN 1mg EVERY TWO MONTHS.

What symptoms do you have?

Sorry, caps are for emphasis as many docs do not treat according to the BNF and so patients have to be aware of what it says.

Yes, as you say, with underactive thyroid and not enough B12 you can certainly have fatigue: I had, but you should not have to endure fatigue, get the b12 level high for a few months so that the cells are saturated and the thyroid function will improve, provided you are having optimal thyroid treatment also.

[MCarina in reply to nostoneunturned]

Hi your advice is very helpful and I did have the B12 test before the injection.Also I decided to stop the Multi Vitamin suppl.It seems that something has to be adjusted,because I'm getting this dry cough and feel tired most of the time.Also read that if B12 is not enough and having underactive thyroid you might get thiese symptoms.I have already checked the lungs and they are clear.