My 16 yr old daughter has been pale, lethargic, (falling asleep only a few hours after waking) and feeling sick on and off for a while now, perhaps even a year. In desperation, we asked for a blood test and she got a 'Dramatically low' B12 result, and diagnosed with Pernicious Anaemia and has been prescribed with initial weekly injections, starting on Tuesday (4 days time). What kind of noticeable change is she going to experience and over what period of time, when will she feel 'back to normal'?
Thank you all in anticipation of some helpful advice.
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ShuMoo
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Thanks, I have spent the last 39 minutes reading everybody else's comments, it would seem that 'how long is a piece of string?' comes into play. And yes, I think from reading posts, 4 months would be the start of feeling better, which is something. I hope you start feeling better soon too, thank you again for responding.
I think recovery is often linked to the length of time someone has been suffering - as there is much repair work to be done. Often with Auto-immune conditions and absorption issues it may be appropriate to test VitD - Folate and Ferritin ( Stored Iron ) Folate and B12 work together in the body in an important way. Also if there are neurological symptoms the treatment differs and this is laid down in Guidelines - see below.
If you are on a PC there is a heading - Pinned Posts - where you will find lots of useful information - to the right of this page. On other devices scroll down and down for the same heading.
Hope all goes well for your daughter. So good it has been picked up - as it seems so many Docs leave patients wanting far too long.
Do you have the ranges - Ferritin looks slightly raised - inflammation ? If your VitD was measured in the UK then it is very LOW and should be treated.
It is also important that your daughter's Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.
Both iron and folate may be needed so please have these levels checked by her doctor.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
If you’re in the UK then your daughter should be getting three injections a week, for at least two weeks. Ask your doctor to prescribe according to the BNF.
I am in the U.S. and had four once-a-week loading doses. I was barely deficient on paper, but extremely fatigued. I noticed very little difference at the end of the four loading doses. It was not until I started self-injecting on a biweekly basis that I really began to feel improvement with any degree of consistency. Even so, I still have bouts of severe fatigue, especially if I do what would normally be considered a healthy level of exercise. I'm working now on making sure my cofactors are sufficient in the hopes that I'll be able to support weekly or biweekly injections enough to engage in a consistent exercise program.
I think your wise to read up on here as there is a wide variation in what people need in order to feel well. I also think it would be worth ringing the PA Societys helpline. They will give you sound advice as your daughter at 16yrs is still a child & I dont know if the protocol of treatment would be different.
Although am not formerly diagnosed with PA my B12 was in range but on the low end of it & I have a condition strongly linked to PA & had many of the symptoms! Ive found whilst am doing loading I need definately alternate days of jabs, infact benifitting from daily to improve my neurological symptoms. Your daughter is only 16yrs so a child still so I would seek direct advice from the PAs helpine. They also have a doctor on their helpline once a week to advise GPs too.
Hi there I was exactly the same 7 months on I'm even worse please don't think you're daughter will be im just saying you really got to push you're doctor if no better now they think I have m s or me, they kept saying it takes months. I wish you're daughter well x
I would also investigate other issues that could be involved from Alpha Gal Meat Allergy to Ehlers Danlos Syndrome to Fibromyalgia & ME/CFS one can have all of the above combined & a good Allergist who knows Alpha Gal well & a good Genetic Doctor as well
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