When do you feel better?: My 16 yr old... - Pernicious Anaemi...

Pernicious Anaemia Society
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When do you feel better?

ShuMoo
ShuMoo

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.

17 Replies
oldestnewest

I’m only one month in since my PA diagnosis. I’ve had highs and lows during this time and still trying to figure out when I will start feeling better.

I’ve read on other online post that you start feeling completely better around month four.

I think your daughter will get an initial boost after the first few injections.

Hoping for the best and that she makes a full recovery.

ShuMoo
ShuMoo
in reply to KiaB

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.

KiaB
KiaB
in reply to ShuMoo

Thank you for your well wishes. This disorder is not easy... but we will be okay.

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.

onlinelibrary.wiley.com/doi...

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.

Bobbie09
Bobbie09
in reply to Marz

Hi Marz

What would you expect those levels to look like to be pointing towards or away from a vitamin b12 definciency?

My vit D was out of range (too low) and thats with already taking 1000 vitamin tablets.

Ferratin (too high) and folate wasn't tested. Both of these the doctor wasn't concerned by or looking into more.x.

Marz
Marz
in reply to Bobbie09

What was the actual result for the VitD ? 1000 iu's sounds more like a maintenance dose. Treatment guided by results - see below.

vitamindcouncil.com

Folate should be tested and treated if low as it works with B12 in the body in an important way.

Raised Ferritin can indicate inflammation.

If VitD was below range then loading doses should be prescribed by your GP. You can look up the protocol for your area on-line I believe.

Bobbie09
Bobbie09
in reply to Marz

They've tested vitamin D twice and both were 45 so nothing alarming and nothing prescribed. I will ask to get folate tested.

Ferratin was 151

Mean cell haemoglobin was out at 306

Phosphate out at 0.79

So as they were all slightly out they were left as being ok.

Marz
Marz
in reply to Bobbie09

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.

clivealive
clivealiveForum Support

Hi ShuMoo

Are you in the U.K?

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.

I wish you and your daughter well.

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.

Hi,

Have you considered joining PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

Lots of useful info on PAS website. Need to be PAS member to access some of the info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone, may take a few days to get response.

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Martyn Hooper's blog about PA

There are stories about young people with PA on this blog.

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book

"Could It Be B12? Paediatric Edition: What Every Parent Needs to Know"

If you're in UK, I'd suggest reading following documents.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

More B12 info in pinned posts on this forum.

I am not medically trained.

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

If you are in the UK she should be having injections every other day for 2 weeks. My daughter had this then weekly for a month, now 2 monthly.

Took a couple of months to start to feel better, 6 months on still the occasional symptom but pretty much back to normal.

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

GM ShuMoo, how is your daughter coming along? I hope all is getting better!

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