B12 deficiency daughter with blood blister

[sonnyjoe1]

HI My daughter has been diagnosed with b12 deficiency about a year ago, she started of with injections every 6 weeks now every four weeks, but still struggling, she has also started the spray in between injections, gp wants to see her again in 2 months time to see how she is, but she has gone on holiday to Dubai and has has ulcers in her mouth now has blood blister under her eye is this to do with b12.

[Gambit62 Administrator]

doubt that the blood blister is related to B12 - the mouth ulcers could possibly be - though generally B12 deficiency is associated with swollen and sore tongue rather than ulcers.

Your daughter really needs to seek proper advice from a medical professional.

Would visiting a local hospital be covered on her travel insurance?

[sonnyjoe1]

Yes she went to pharmacist who gave her some vitamins. But I think she needs more b12 injections more frequently, she has them every four weeks now but before the next lot she feels so tired and can’t breath proply which is due to the oxygen not getting round the body where she needs more b12, my GP is good but I think she needs to inject her self, but I can’t understand the GP is saying her other levels for folate vit D iron all good, we don’t know if she has predacious anemia has GP said he done the blood test for that is come back normal, but he says doesn’t mean she doesn’t have that. I’m confused x

[Vicky2822 in reply to sonnyjoe1]

Hi if you are in the UK I would always recommend getting and keeping your blood test results. They have to give you them free by law . My daughters gp said her folate was fine when it was the very bottom of the range at 4 (needs to be much higher especially when on b12 injections) and the same with her ferritin / hers was 14 and should really be 80.

Being just in range is very different to being well!!

[sonnyjoe1 in reply to Vicky2822]

Thank you Vicky, we have an appointment Tuesday so going to get a copy. X

[sonnyjoe1 in reply to Vicky2822]

I’m in UK x

[Vicky2822 in reply to sonnyjoe1]

Does she take folic acid or folate supplements? Not sure if your on Facebook but there are a couple of good b12 deficiency grips on there (I joined the 2 with the highest number of members). You can post your daughters blood results on and they will give advice. Also have a oroctocol of what other vitamins minerals to take. Might also be worth getting her vit d level checked (but maybe not yet if she’s just been on holiday).

Have they found out why she is deficient? You are very lucky her gp is tailoring treatment to her needs. My daughters gp won’t budge from the 12 wk time frame for injections even though guidelines have changed to 8-12 wks.

[sonnyjoe1 in reply to Vicky2822]

Hi Lisa Yes I’m joined to a few on Facebook, it’s all so confusing. To be truthful my GP is good and the last lot of blood tests was done before she went away he done them all, but he said they was all fine, she explained to him how frustrating it is, he gives her injections every four weeks now, also taking about giving her intervenes injections for vitimins I thin it was for. He did test her for precious anemia but that came back she wasn’t but he said it sometimes not true reading, so he’s been good to be fair, but she just feels so low no energy feels she can’t breath proply at night wakes up in middle night has to sit up to get her breath. But after week of having b12 she not to bad but only feels ok for couple weeks goes down hill again.

[Vicky2822 in reply to sonnyjoe1]

Yes my daughter is still so exhausted all the time it’s such a worry. Is she taking a folate/folic acid supplement? You need this for the b12 to work. They also recommend a general b complex I bought the one in H&B she takes one a day (says 2 but gave her stomach pains) and that’s 4 mths on and 2 off (due to b6). Also make sure she had more potassium in her diet when she has injections (bananas, coconut water, jacket potato) and magnesium flakes in bath. My daughter gets breathless but I think that’s the low ferritin hers was 14 to start had gone up to 34 so waiting to see what it is this time (keeping on iron tablets till it gets to 80). Next time we go I’m asking for h. Pylo test, I’m also convinced she has low stomach acid (need that to breakdown red meat to release the vitamins). The whole thing is so frustrating but as I said you are so lucky her gp is a good one.

[sonnyjoe1 in reply to Vicky2822]

Well no Vicky she isn’t taking anything else apart from injections and in between the spray of b12 every day now wat Gp toldher to do. But that’s what I’ve been reading about the folate ferritin etc so I’m going to go get some get her to start that as well, even though GP says the levels for them are fine. How old is ur daughter, my daughter 26 gotcdiagnosed year ago but always had problems from when she was 16, had her under private hospitals for a few years on and off had all different tests done everything came back she a healthy girl, but she felt awful kept feeling faint all the time tired, it’s my GP who found out what was wrong with her, but she has been to AE a few times because stomachs pains she gets realy bad pains doubles up, one time it was poo st knob the bowel hadn’t cleared, so I think ur right its the stomachs not working proply. I’m just in process of getting my husband checked out has he has stomach problems and is on oprozol tablets for years and that lowers your b12 and he’s mum has just died of bowel cancer I think it’s all connected with the b12 it’s in the gene on he’s side.

Sorry to go on lol x

[sonnyjoe1 in reply to sonnyjoe1]

Sorry spose to read poo stuck in the bowel x

[Gambit62 Administrator in reply to sonnyjoe1]

GP is definitely a keeper when it comes to B12

IFA is not a very sensitive test - it gives false negatives 40-60% of the time (% depends on the exact test method). It tends not to give false positives. So, a positive is good indication that PA is the cause of a B12 deficiency. A negative is really inconclusive.

The BCSH standards refer to IFAB-negative PA in recognition of the signficant limitations of the IFA test.

B12 deficiency can affect the auto-nomic system which is probably why your daughter has air hunger - signals about oxygen levels just aren't getting through properly when your daughter doesn't have enough air. Anaemia doesn't need to present. If your daughter had macrocytic anaemia because of the B12 deficiency then it should have cleared by now.

If you have a diary of your daughters symptoms which show the trend you describe - okay for a while and then all the symptoms come back - it is possible that her GP may be open to providing B12 injections more frequently.

Please be aware that there is a lot of chatter in some places about 'optimal' levels for vitamins and minerals - reality is that we are all individuals and what is right for one may be very different from averages that are used as 'optimal'. The human body is designed to absorb minerals and vitamins from food and often has mechanisms in place that stop accidental dietary overload. Taking huge amounts of supplements often overrides these mechanisms and can result in problem.

Ferritin is just one measure of iron status - though generally a good one. There have, however, been cases of people who had ended up with iron poisoning because they were given supplements based just on ferritin levels withouth a full iron panel to double check.

[sonnyjoe1 in reply to Gambit62]

Thank you for info, going GO on Tuesday again going to show him this and get him to explain to mecresults of her last blood test x

[sonnyjoe1 in reply to sonnyjoe1]

GP

[Gambit62 Administrator in reply to sonnyjoe1]

sonnyjoe - just for future reference - if you click on the 'more' button/link by a post you will see the option to edit a post if you spot a typo after posting

[Emmapemma]

I had both severe ulcers and swollen tongue when I started treatment, felt like my body couldn't cope with the increase of b12. I started taking folic acid and it got better.

[sonnyjoe1]

She takes folic acid x