Low B12 but not low enough...

[TodaysFishIsTroutALaCreme]

DD has low ish B12 - range is 150 to 900 and she is 275

She experiences a LOT of B12 deficiency symptoms but because her bloods are in the normal range the GP will not do anything about it. She may have coeliac disease, we are waiting for an endoscopy to confirm but as it is going to be done under GA, the waiting list is...significant.

My questions for those who have suffered with low B12, when did your symptoms happen. I get the impression from the GP that because her bloods are normal, she should not have symptoms of B12 deficiency. I have asked for another appointment and would just like to go in with some information and I will be asking what else could it be that is making her feel so ill. She also has low iron but is in the normal range for that as she takes ferrous femorate (sp) every day.

TIA

You can get B12 injections privately. Around £30 every 6 weeks. Might be worth seeing if that helps

I have yet to find somewhere who will do it privately as DD is under 18. I would definitely go down that route otherwise. After all, it wont hurt her but it may make a difference.

I am currently waiting for an endoscopy to confirm celiac. The GP also said that my B12 was slightly low but wasn't concerned. I'm wondered if the 2 things going hand in hand after reading your post. I was tested for celiac due to tiredness so it could be that causing it rather than the B12

Hi Scooby

Yes, they do go hand in hand as coeliacs prevents absorption of nutrients - I lifted this from the NHS page

*Malabsorption
Malabsorption (where your body does not fully absorb nutrients) can lead to a deficiency of vitamins and minerals. This can cause conditions such as:

• iron deficiency anaemia
• vitamin B12 or folate deficiency anaemia
• osteoporosis – a condition where your bones become brittle and weak*

Hope you get your endoscopy soon.

PS, take the sedation. lol

Ask your GP for a therapeutic course of B12 to see if her health improves. She will get loading doses then B12 every 12 weeks for a number of months while therapeutically assessing her health

@TodaysFishIsTroutALaCreme b12 injections can be bought (safely!) online. I had a private iron infusion last week, the consultant taught me at the time to self inject b12 and also provided me with the links to purchase the needles, syringes and b12 from directly. He would have happily continued to prescribe them for me privately but said buying them myself is cheaper

Metaverse GP wont give her injections because her bloods are "normal"

Justoneday now that sounds like a plan apart from the fact it would be me injecting her and I am not at all trained in that. I wonder how I could go about getting training.

I order my own from a pharmacy in Germany and self inject using a very fine insulin syringe. I watched some YouTube videos and although nervous first time, find it very easy now.

Join FB group for B12 deficiency and Pernicious Anaemia as you'll need to add in cofactors and keep on top of ferritin too x

B12 deficiency symptoms are very general and can be caused by anything. If her blood is in the normal range then the symptoms are probably not being caused by B12 deficiency. In fact one of the things that can cause those symptoms is coeliac disease, which you and your GP already suspect she has.

Why do you think she has a B12 deficiency when her blood is normal and her symptoms can be explained by coeliac? The best course of action is for her to have her endoscopy, you will probably find that when she stops eating gluten her symptoms will go away.

Just out of interest, why does she need a GA for the endoscopy? Most people just have mild sedation, it’s very unusual to have a GA.

@TodaysFishIsTroutALaCreme no training as such required. Pinch a chunk of stomach and inject. There are YouTube videos showing how to do it but it's pretty straightforward

Buy her a good quality B12 supplement? I believe the one you might be best using is methylcobalamin as there may be issues getting the benefit from other cheaper types.

What symptoms has your DD actually got, which you are attributing to B12 deficiency?

Hi. Yes they are indeed general symptoms. I dont necessarily think the symptoms are down to B12 deficiency, I just want to get to the bottom of why she feels so rubbish all the time and because her iron is low and her b12 is lowish, it was just an assumption that they are both playing a part in how crappy she feels.

The tried to do the endoscopy but apparently, despite the sedation, they couldn't stop her gagging enough for them to get the camera in. They said it was quite a common problem (1 in 10) and that they would put her on the surgical list instead.

The blood tests for coeliacs was equivocal. DD does not have any symptoms as such, it was a different GP to her normal one who wondered why her iron was always low and suggested the blood test.

What symptoms does she have which you think are due to B12 deficiency? It’s much more likely there is another cause (coeliac, low iron, stress) if her blood levels are normal.
Do her symptoms (and levels) improve with oral B12?

Thanks - will do

Dizzyness
Extreme fatigue
Loss of appetite
Vision issues (optician checked - all ok)
Head aches
Weight loss

Some of these can be put down to the low iron but not all

Sorry - meant to tag you in the above post - I am not vey good with tech 😳

There’s such a thing as a “silent coeliac”. Which means you don’t get sick from eating gluten, you have no gastrointestinal symptoms, but it still does internal damage resulting in vitamin deficiencies and other nasty symptoms. All of the symptoms you mention can be caused by coeliac, there doesn’t need to be any other explanation.

I would be pushing for the endoscopy urgently because if she does have coeliac, then the longer she keeps eating gluten the sicker she’ll get. Pressure them to treat her as an urgent case because she’s so unwell.

Also - this may not be the case but it’s worth bearing in mind - in the puberty years a lot of teens feel dizzy or tired and generally crap - simply because their body is going haywire with hormones and they have a lot of stress and anxiety. It usually resolves by mid to late teens. Some may need additional support to address their anxiety.

One of the reasons why I am wondering if it is the low B12 that is causing her issues is that on one of her many blood tests she has had over the years, the GP said "your iron is in range now, but it is at the low end so that is probably why you still feel rubbish". So by extension, if her B12 bloods are at the low end of the very large scale, she could still be symptomatic. My original question on the thread was at what point do you get symptoms. If normal is 150, can you be absolutely 100% fine but if you are at 149, then that is where the symptoms kick in?

I dont know. All I know is that my baby (17 but still my baby) is really not at all well and sleeping for 14 hours straight is not right

It depends on the individual. We all have different bodies. I might feel fine with 275 B12 while you might feel unwell. There isn’t a strict cutoff at which symptoms develop. Usually people feel reasonably ok if they’re within the “normal” range.

It won’t do any harm for her to have vitamin supplements for B12 and iron etc. But you need to know urgently if she has coeliac - because if she does, she’s basically being poisoned more and more by gluten every single day.

Second the poster saying buy supliments. My B12 has always been at the low end of normal, but not low enough for injections. As a child I was told pills don't work and if it dropped further I would need injections. As an adult GP said take B12 tablets. Even the cheap ones were enough to get it up to mid normal. (I combined solo B12 with a multivitamin).

Hi Kaill

"Silent Coeliac" sounds very much like her and the vitamin deficiency bit (hence the low iron)

She was on the urgent list for the endoscopy under sedation after losing 10kg in a few months (and she was only teeny to begin with - she is now almost underweight). She had the failed procedure quite quickly but since being put on the GA list, it has now been bumped to 18 months to 2 years. I have a call booked in with the GP and I will ask her to see if she can expedite this. After all, it cant all of a sudden change from being urgent to not urgent iyswim?

Kaill she is already on ferrous femorate. I have managed to get her on the cancellation list for GA and she has to have gluten in every meal for 6 weeks before hand apparently so it will be difficult to get her on a GF diet just in case we get a surgical slot.

andweallsing Which ones do you take and do they taste as horrid as Vit B1 vom emoji lol. I am more than happy to make her take supplements if they help, but I heard the pills were almost useless. But hey, if it helps...

since being put on the GA list, it has now been bumped to 18 months to 2 years
That’s absolutely unacceptable. If she does have coeliac, going 2 years without treatment will make her seriously ill. You need to start shouting very loudly and get it speeded up. If coeliac is suspected they’re supposed to diagnose within a couple of weeks because of how seriously ill it can make you!

Would they be willing to try the endoscopy again? You can have it without sedation, it’s not very nice but it does mean you’re awake enough to consciously swallow the camera and try to control your gagging.

Do you know what her blood test results were, and why it’s considered to be ambiguous? You could contact Coeliac UK for advice, my understanding is that children are usually diagnosed based solely on blood tests and are not required to have an endoscopy.

Yeah, I was told pills were useless for several decades, until theyw worked for me...

I tend to take the cheap chewable B12 from discount shops, plus the red soluble multi-vit from Savers that you mix with water.