AIBU to question borderline B12 and folate results due to symptoms?

[JadeSmith]

Just wondering if there are any pathology lab workers out there or anyone in similar situation.
My folate and B12 are at the low end of the NHS normal ratio.
They are both deemed borderline.
They are not out of range, but they sit at the bottom of the normal ratio.
GP has said 'Satisfactory NFA' because they fall within the ratio.
But I am heavily symptomatic.
For months on end, I have had, and still have:
Crushing fatigue
Exhaustion
Zero energy
Headaches
Muscle aches
Memory impairment
Brain fog
Non stop strong pins & needles in all my toes
Diarrhoea
Palpitations occasionally
But GP says no further action as although low they are still within normal ratio.
What should I do?

Hello, I had all these symptoms, had the B12 injections which helped a bit but didn’t get rid of all the symptoms. It turns out I have a yeast intolerance and since I have cut it out I feel so much better- no muscle pain, no pins and needles, no brain fog and far fewer gut issues. I know it sounds a bit mad but maybe something to look into? Yeast is in loads of stuff so it is inconvenient.

GP has said 'Satisfactory NFA' because they fall within the ratio.…. What should I do?

You go back and you say, thanks that’s great news.
Now, how are you going to treat my, very real, symptoms? And you keep repeating it until you get an answer.

Do you have any reason to believe you may have an absorption issue? Could there be a dietary deficiency? Asking as both me and and my DD have had B12/folate deficiency that was definitely diet (vegan/vegetarian) that needed treating but we have managed to improve alongside it ourselves with dietary changes. DH however, not vegan/vegetarian, has the same issue but it is absorption and requires ongoing injections. I’m not suggesting you try this instead of (or before) seeing the GP again btw.

I've been told I likely have Coeliac.
My 2 DC are both diagnosed with Coeliac and after taking a history from me, both their 2 different Coeliac hospital Consultants told me it's hereditary and that I almost definitely have it.
But won't test positive for it because I can't and don't eat gluten. It makes me horrendously ill. You have to eat gluten daily for 6 weeks to get an accurate test result. I can't do this, i wouldn't be able to function if I ate gluten daily for 6 weeks.
Do B12 injections only get given if you're below the normal ratio?

Yes. They won't give you supplements/injections if you're in the "normal" ranges, however unrealistically low those are on the NHS.

From what you're saying, coeliac seems likely then.

The below is what worked for me, but my issue really was severely symptomatically low B12 & low ferritin, just not so horrifically low that they would treat it. So please do your own research, cos I don't have coeliac.

Liquid B12, as a mix of adenosylcobalamin and methylcobalamin, which you absorb under your tongue. About £25 a bottle and lasts a couple of months. These are the most bio-available forms, one which works in the brain and one in the mitochondria for energy.

Then a general all the B vitamins tablet, & check for getting enough potassium.
I take the above first thing every morning, on an empty stomach.

In the evening (& at least 2 hours after caffeine and food), I take iron (ferrous fumarate or iron bisglycinate generally better absorbed and tolerated) with vitamin C (orange juice etc also fine, doesn't have to be a supplement). Some evidence showing iron is better absorbed if you take it every other day, so I do 200% RDA alternating days.

Magnesium at bedtime can be helpful as well.

But, I don't have coeliac, so go back and check in with your doctor / do your own research.

I haven't done it, but private clinics will do B12 injections for about £30-40 per dose, and iron infusions for about £300 per infusion, but they will want blood tests to check that that is appropriate treatment, although they'll be working to better ranges than the NHS ones. I don't know if they accept NHS blood tests or would charge more to do their own.

How amazingly helpful of you!
Thank you so much!!
I will look in to all of this tomorrow. 😊

What were your results? And do you know the ranges that your local health authority uses (they differ around the country - that’s a whole other thread!).

Would be interesting to know before offering further advice. Personally, I’d advise against any supplements for now and get your bloods redone in, say, 3 months time to get an understanding of how things are doing. Otherwise, you could be masking something that is deteriorating.

Are you vegan/vegetarian - as that can have an impact on B12.

Roughly what age range are you - B12 can deplete as you get older.

Have a read of the pernicious anemia society website, it often goes undiagnosed.

I struggled with B12 deficiency due to long term PPI use due to a digestive disorder. Got fed up with the NHS ludicrous every three months injection protocol. There’s a Facebook group called Vitamin B12 wake up run, I believe, by 2 nurses. Incredibly helpful re the details on how to self inject, where to get what you need etc. A lot of people have pernicious anaemia and are still not adequately treated by the GP. For years now I have ordered b12 vials from Germany (totally legal, it’s available over the counter there) and self inject every two weeks. You need the first done in a clinic (prob costs about fifty quid privately, to check you don’t have an adverse reaction to the injection) then you’re good to go. If I go more than 2 weeks I get ill, but the NHS were adamant 3 months was sufficient.

I had that, not low enough to need injections. I started to take B12 and folic acid supplements (also improved my diet), and noticed a great improvement in a fortnight. That was a few years ago. I still take B12 daily and folic acid twice a week. All is well.

B12 is water soluble so any excess is excreted, you won't do yourself harm by taking.

My results are:

B12
283 ng/L
Lab ratio: 197 - 771
Filed as satisfactory NFA

Folate
3.4 ug/L
Lab ratio: 1.9 - 25
Filed as satisfactory NFA

Ferritin
90 ug/L
Lab ratio: 30 - 150
Satisfactory NFA

The ferritin I agree seems satisfactory. But the B12 and folate seem borderline to me.

I've spent so long wondering why I feel so appalling all the time, then I looked at symptoms of low B12 and folate and I tick every single symptom. But GP says NFA.

FYI, my B12 was about 340, but when I reviewed past tests, it had previously been about 800 for multiple years, so for me, 340 was a precipitous drop.
And taking it did solve my problem, though as mentioned before, I don't have coeliac.

This is the problem with them using a normal distribution but not actually having any idea where an individual might be on the curve before assessing them. It was lucky I had the prior results or I'd never have realised. "Normal" for me is apparently way higher than the average.

My ferritin was 11, but my area NHS guideline is only to treat if under 10. Which is pretty bad.