15yr old daughter B12?

[Thyroidseb]

Hi my daughter had a reading of 174 and Dr gave her oral Cyanocobalamin 50mcg to take daily. This has been for 12 weeks. Her b12 reading is now 247. Should we hve seen a more significant increase or is this a clear indication that it is diet related and not PA please. We have Drs app Monday morning so any advice or links in what to look for would be great x

[Stroodsue]

Absolutely! Where in the world are you by the way?

[Thyroidseb in reply to Stroodsue]

In the UK. Is there somewhere I can read more on what results we should see? They have currently said she is now within range which is technically true even if right at the low end. What should I be saying to them in Monday?

[Bluedragon in reply to Thyroidseb]

Is she a vegan? If not, there would be reason to suspect she can't get what she needs from food. The Dr should give her loading injections, he's not followed the correct guidelines. Do you have her blood test results- post them, including the lab ranges. Important that folate and ferritin also good. For starters, read Could it be B12? - you can get on Kindle and is easy to read. You need to be aware of NICE etc guidelines. Hopefully someone will be along shortly to post u links as I really must get ready for work. But yes, get ready to know more than your Dr....

[Stroodsue in reply to Thyroidseb]

Ask gp for print out of her results...

I would personally be asking for a trial of B12 Loading injections.

What are her symptoms?

[Thyroidseb in reply to Stroodsue]

Fatigue, anxiety, depression, breathlessness. Also I have B12 deficiency and mum has pernicious anaemia x

[Sleepybunny]

Hi,

I found it helpful to get paper copies of all blood tests especially the following ferritin, folate, B12 and the full blood count. Has she had folate, ferritin and full blood count done recently?

Sometimes I was told my tests were normal and when I got copies I found they weren't or were at the edge of the range.

The following documents/websites/books I found useful.

ukneqas-haematinics.org.uk/...

This basically says that if someone is symptomatic but has normal blood results they should be treated to prevent neuro damage.

bcshguidelines.com/.../BCSH......

Lengthy document but I suggest you look particularly at page 29 which is a diagnosis flowchart. It is likely that your local NHS should be following the recommendations. You could ring your area's CCG (Clinical Commmisioning Group) and ask if your county/area is following these guidelines. Put your county and CCG into google and it should give a link.

bmj.com/content/349/bmj.g5226

Doctors (hopefully) read the BMJ. The article makes the point that symptomatic patients should be treated.

I'd strongly recommmend that you ring the PAS (Pernicious Anaemia Society).

Head office: 01656 769 717 You can leave a message and they will get back to you.

pernicious-anaemia-society.org

The library section on their website has some useful documents including a summary of the BCSH guidelines and also lists of symptoms. Non members can access some documents.

b12deficiency.info

b12d.org

Does your daughter have any neuro symptoms?

pernicious-anaemia-society....

The reason I'm asking is that treatment when there are neuro symptoms is more intensive.

All GPs will have access to the BNF (British national formulary).Chapter 9 Section 2.1( it might be section 1.2) gives guidance for treatment of B12 deficiency.

patient.info/doctor/pernici...

Look in the "Management section"

With the "Full Blood Count" high MCH and high MCV can indicate the possibility of a macrocytic anaemia.

patient.info/doctor/Macrocy...

The normal serum B12 test does not always give reliable results. Has she had an Active B12 test or an MMA test or a homocysteine test? GPs can be reluctant to ask for more expensive tests. I have offered to pay for tests in the past. It is possible to have them done privately.

b12deficiency.info/b12-testing

The chair of the pAS has written two useful books.

Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency

Living with Pernicious Anaemia and Vitamin B12 Deficiency

[Frodo in reply to Sleepybunny]

I wonder if there is an admin who could 'pin' your post, Sleepybunny, as there are lost of useful links & sources of info in it & I've noticed you and others keep having to repost these almost every day, which is really helpful. If it could be pinned it would be accessible all the time.

[concerneddad]

Hi,

I'm no expert: my daughter of 23 has pernicious anaemia and now has regular B12 injections: Interestingly she believes the onset of this condition was in her teens remaining untreated until she developed a wide range of symptoms both physiological and neurological/psychological so I would suggest that you gain as much knowledge and information as possible on this site and elsewhere, ask for blood test results from your GP, is there any evidence of autoimmunity? My daughter has Reynauds, Pernicious anaemia is also auto immune affecting the periatal?cells...It's complex. I don't know why youngsters are developing these conditions..however in your daughter's case it maybe dietry as you suggest. You need to be able to talk with your GP about your concerns and with your daughter about any changes she may have noticed.

Good Luck

[victoria1000]

Doctors reseach shows that Vitamin B12 tablets 1000ug is safe. You will get this small tablet in independent health food shops and I have been taking b12 1000ugs for 15 years. Vitamin B12 lowers homostyine which is a toxin that causes strokes and heart attacks

Love & Peace

[engels in reply to victoria1000]

1000mcg tablets may be safe but for anyone with a B12 absorption they are very unlikely to be of any use.

[victoria1000 in reply to engels]

The reason the B12 is not absorbed is because the amount given is too low, usually 10mcg. All my friends take this little table and they are well. We would waste £2.50 buying the tablet if it did not work. Belief is everything. Patrick Holford is a nutritional therapist and I trust him

[engels in reply to victoria1000]

Those of us who have, for whatever reason, lost the ability to absorb B12 from food can not absorb B12 from oral tablets either regardless of the amount of B12 in the tablet. A very tiny amount can, under certain circumstances, be absorbed passively but this tiny amount is nowhere near enough to make any difference to our symptoms although it may raise the level of B12 in our blood slightly.

To suggest that taking 1000mcg oral tablets is the answer to our problems shows a complete lack of understanding of chronic B12 deficiency.

[illnesswhatillness]

My advise - ditch the cyanocobalamin - it`s got cyanide in it ! Get a B12 boost spray containing methylcobalamin active B12 or buy methylcobalamin sublingual lozengers with Co Q10 to help absorption .

[Sleepybunny]

Hi,

Perhaps the GP might consider giving her the Active b12 , MMA and homocysteine tests?

Bear in mind that supplementation with B12 prior to these tests may affect the reliability of the results. It is possible to get these done privately.

b12deficiency.info/b12-testing

The book "Could it be B12" by Sally Pacholok is a useful read.

[Thyroidseb]

I have her latest results as below, any thoughts would be fab x

Full blood count 424

Haemoglobin concentration 143 (115-165)

Total white blood count 9.2 (4-11)

Platelet count 306 (150-450)

Mean cell volume 93 (84-102)

Mean cell haemoglobin 40 (28-33)

Mean cell haemoglobin concentration 326 (300-350)

B12 247

Serum folate 8.5