Stubborn teen update: Thank you for... - Pernicious Anaemi...

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Stubborn teen update

Auntyp62 profile image
22 Replies

Thank you for your replies a few days ago. My grandson agreed to a private blood test but the first date available when he is not away with his sporting commitments is in November. He still refuses to see a doctor and we think that is because he thinks the doctor will end his sporting career. We would like him to take supplements till the end of the season in a hope he sees a difference in his performance and uses the off season to completely sort his deficiency and he has agreed to this but not too sure of what strength to get him. We are taking tiny steps as he is still adamant there is nothing wrong.

His results in April were b12 150 and folate 2.5.

We are assuming this has not improved As his diet has not changed even though he believes he eats healthy.

In a belief that you can’t overdose on b12 is 5000 a day safe and ok?

And what strength folate?

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Auntyp62 profile image
Auntyp62
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22 Replies
fbirder profile image
fbirder

As the absorption of B12 is limited to about 10 mcg at a time, you'd be better off with a lower dose three times daily.

For folate a supermarket folic acid (200 or 400 mcg a day) should be enough.

Auntyp62 profile image
Auntyp62 in reply to fbirder

Thank you

Nackapan profile image
Nackapan in reply to fbirder

I missed this post?? How I do not know...perhaps writing at the same time

Nackapan profile image
Nackapan

I would think 400mcg folic acid daily.

If hes not had b12 tablets before I would start at a much lower dose.

My husbands b12 was 180 and he only took 10mcg b12 daily . I was amazed when on his next blood test it was in the 300's

It just depends if your son can absorb it. You can only absorb so much in any one time.

Fbirder has done posts on this.

Bsh recommended 1000mcg b12 if your injections got stopped .

Methyl b12 does not suit alot of people. Cynocobalamin tablets are available. Remember supplements will skew his blood test results

At least he had a test in April.

If he is still able to do sport hrs not doing too badly at all.

' you can only take a horse to water '

Auntyp62 profile image
Auntyp62 in reply to Nackapan

Thank you

Nackapan profile image
Nackapan in reply to Nackapan

Can you send him emails to read?

Might be more receptive to that. ? Or links for b12 deficient sport people he might identify or take note more?

Auntyp62 profile image
Auntyp62 in reply to Nackapan

That’s a good idea if I can find one. I think he is so frightened he will lose his sponsors if they find he has another health problem that he is in total denial even though his performance is suffering and coach says he has lost his edge. Can’t say who he is but a lot of people will know him

Nackapan profile image
Nackapan in reply to Auntyp62

He needs time out if possible to get healthy again.

It's the fear of stopping and facing it.

He is young but if not treated he will be under performing.

His coach should be supporting him.

My daughter at that age wasnt diagnosed . She was wrongly labelled with fibromyalgia. To cut a very long story short. She was very ill at uni. Would not stop studying.

Did keep going to the students doctors, brain scans even . No b12 done.It was years later found whilst in hospital by chance. Megobalastic anaemia low folate and severe b12 deficiency. Low vit d I truly think the underlying cause of most of her health problems was undiagnosed b12 deficiency.

She had to give up teaching, guiding. Cycling . The list goes on.

She uses a wheelchair now. Use her as an example of being too ill to think straight. Too old for me to do as much as I wanted . I did ca the am ulance to get her admitted into hospital. Akso fought them when they kept wanting g tk discharge hef when she couldnt even sit up without passing out. That was the start if getting treatment. One doctor listened to her and me .

Shame on those other doctors. She lost faith in doctors . Kept being sent down the mental health route. Would not listen to her. I then did insist on going with het for appointments. Got as frustrated as she was.

Tell your grandson his sport can be saved only if follows the example of Steve Redgrave Gary Mabbutt both have type one diabetes but only performed well as took it seriously and got their medication right.

Darren Fletcher ?might have needed b12 as has ulcerative colitis . He admits burying his head in the sand wS very immature.

Auntyp62 profile image
Auntyp62 in reply to Nackapan

Horrendous for your daughter! No wonder we lose faith in doctors. H has ulcerated colitis but in remission 🤞. And does know other sportspersons in similar situations but they all strive above it and that is what he thinks he is doing. He has totally lost his spark. He will be able to take a break in November and hopefully he will raise his levels and get his spark back. Many thanks for your support

Nackapan profile image
Nackapan in reply to Auntyp62

Yes hope he does and nips it in the bud.

lifegems profile image
lifegems in reply to Auntyp62

How about getting him to have a vitamin infusion ? It can be done in the name of keeping healthy and I believe it’s direct into the blood and may give some short term help ? Probably best to look it up and research properly .. just an idea

Auntyp62 profile image
Auntyp62 in reply to lifegems

Never heard of it....I will research

Foggyme profile image
FoggymeAdministrator

Hi Aunty62.

I'm so sorry that your grandson is struggling and I can well understand how worried he is about his continued career as an elite athlete.

Reading your previous post, I see that your grandson has Crohn's disease? Crohn's disease causes absorption issues and so, oral B12 supplements will not be an effective form of treatment.

It's usual for those with Crohn's to routinely have B12 injections (and folic acid, if this is low) as part of their treatment plan so...It’s not quite clear from your previous post but...did the consultant mean your grandson to ask his GP to 'renew' his injections...or 'renew' (in the sense re-do) his B12 and folic acid blood tests?

If he's being asked to reinstate his B12 injections...that’s fairly easy...all he has to do is make another appointment for an injection. If the request is to re-test his B12 levels, then it’s important that he does not take any oral supplements. If re-testing his levels is what’s required, please be aware that...

All professional body guidelines and the PAS guidelines state that B12 supplements should not be taken B12 status has been fully assessed. This is what the PAS says...

Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test.

A couple of things that may help persuade your grandson to sort out his B12 issues...

°B12 deficiency is a known consequence of Crohn's disease - he won't be diagnosed with an additional medical condition.

°His performance is likely slipping because of the B12 deficiency.

°Oral supplements will not be effective because of the absorption issues caused by Crohn's disease

°His performance will continue to get worse until the deficiency is treated.

°The longer treatment is delayed, the longer it takes to recover.

°There is a risk of irreversible neurological damage if treatment is delayed, including subacute degeneration of the spinal cord. That would certainly not be good for his career!

And here's the something that might help to convince him...

°His performance will improve (perhaps) significantly, once his deficiency is treated. (As an elite sportsman who will be under pressure to perform, that ought to be a prime motivator).

Bit confused as to why he needs a private blood test? You don't give the reference range for his B12 result. Ranges vary a lot so depending on the range, he could be low...or severely deficient...or somewhere in between. If severely deficient then it’s imperative that treatment is commenced immediately.

With his history of Crohn's, his GP should be aware that his deficiency needs treating with B12 injections. To be honest, surprised he's not having these already.

It’s such a shame that he's so reluctant to get treatment - the impact on his career may be significant due to under-performance...and that can be fixed if he can stop being a stubborn teenager...and go get a B12 jab.

Very best of luck to him. Let us know how he gets on.

👍

P.s. it’s important that he gets the B12 deficiency treated 24-48 hours before taking any folic acid - in rare cases, taking folic acid before a B12 deficiency is treated can cause potentially irreversible neurological damage.

Auntyp62 profile image
Auntyp62 in reply to Foggyme

Thank you for the reply.. he has ulcerated colitis not Crohn’s disease. The consultant insisted when he was diagnosed that he could absorb b12 but it was a routine blood test done 11months ago during a yearly check which was only passed on to gp in March when we lockdowned which showed his low levels consultant asked that gp did follow up tests but gp has ignored it and as he is struggling we are assuming this is his problem. I was given b12 injections a few years ago but now prefer to take tablets and my mum and daughter are the same. Without b12 support our levels plummet and we get very high homocysteine so we are wondering if it could be genetic and unfortunately he may be like us. It is difficult getting him to a doctors as he is refusing but he is willing to try the tablets and for now we feel it is better than nothing.

Foggyme profile image
FoggymeAdministrator

Ulcerative colitis - sorry about that - Irritable bowel disease so the same as previous reply applies.

Because he has this, he may not absorb oral supplements in the same way as you, your mum and your daughter.

Sounds like he's been deficient for some time...please watch out for neurological symptoms...he needs immediate treatment with B12 injections if he has, or if he develops neurological symptoms.

Just saying...🤷‍♀️

Auntyp62 profile image
Auntyp62 in reply to Foggyme

Thank you, you are right but the more we encourage him to go for help the more he digs his feet in and says there is nothing wrong and refuses to go to Gp. It’s that everyone else can see he has lost his spark and getting him to take tablets at present is a major step forward. Hoping he improves so he realises there may be a problem.

Foggyme profile image
FoggymeAdministrator in reply to Auntyp62

Yes...it must be so tough for you all. I'm so sorry.

Very unfortunate because B12 can also affect mood - just what a teenager needs!

If his coach says his performance is slipping...could he be persuaded that B12 is the cause... 🤷‍♀️. The evidence being in his drop in form?

So difficult when his career...and perhaps his life's dream... may be at stake as well.

Very best of luck to you all. Let us know how it goes.

ClareP5 profile image
ClareP5

Patches are quite a good way for those who don't want to engage with their health. Just need to put on after they've had a shower or on their way to bed. Only have to go on once per week and ideally stay on for 24 hours, but even 12 hours will help!

Auntyp62 profile image
Auntyp62

Oh wow that maybe a good answer to our problem, I forgot about them. Thank you for the idea

Jengastar profile image
Jengastar

Hi! So grateful he has you looking into it all for him. I was a sponsored ultrarunner and I’ve managed to get through it with my sponsors still here, despite not running much for 2.5 years. But that’s 2.5 years of running and training I lost too, as I wasn’t diagnosed and I gave up on the doctors finding cause of fatigue and illness. I so wish I had done everything to find out cause in those early days of not being well. I thought it would pass, and believed my dr when they said my tests were fine. A few years later I was bed bound and couldn’t run at all. I’m about to see a private sports dr (ie they just treat athletes) to see about getting that edge back. Sorry a bit rambling, but really hope he gets treatment before it gets worse!!!!

Auntyp62 profile image
Auntyp62 in reply to Jengastar

Thank you, I know you definitely understand. When performane drops you work harder and get no where. So frustrating gp does not think it’s an urgent thing and it difficult with all his commitments to organise people to see him without broadcasting there is a problem. Hoping it’s not real P.A. and tablets help

Dogwalker123 profile image
Dogwalker123

Hi from the U.K. My daughter has just finished 6 loading injections her b12 was 85. My nurse advised that despite taking b12 supplements before the injections if they have P.A. then the tablets will not be absorbed. Last injection was Friday and we had our first ‘good day’ yesterday. I Know the worry this brings and I wish you luck x

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