Active B12 of 31.5, folate of 1.72 - missing periods?

[Lesleyg13]

Hi Everyone,

I’d really appreciate help with my friend’s daughter’s blood results please. Her main symptoms are being more tired than usual, some breathlessness, and missing periods, or just having a tiny bit of spotting. These symptoms have been going on for about 3 years, she’s 29.

Her GP did some blood tests, which showed low ferritin, but just within the NHS range. This was near the beginning of lockdown etc so he was very rushed. I advised her to ask him to test B12 and folate. His reply was that wasn’t necessary, said her folate has been low before, just eat more green leafy veg! For the B12 he said her MCV was fine (ie not high) so there was no need to test that either. I know from the thyroid forum that MCV isn’t a perfect indicator for B12 deficiency because anaemia can cause low MCV, so the two together can make the MCV look fine.

So I then advised her to take some supplements (B Complex, iron + vitamin C, and D as that was also at an insufficient level) for a few months. She has an iron panel which also showed a low transferrin saturation at only 18%.

She has now had a lot of Medichecks tests done, results just back. She stopped all supplements a week before the test, so no biotin interference. These are the relevant results from 26/6/20:

Active B12 = 31.5 pmol/L (>37.5)

Folate = 1.72 mcg/l (>3.89)

Ferritin = 47.7 mcg/l (13-150)

NHS ferritin in February 2020 was only 27 (10-200)

Vitamin D = 71nmol/l (20-175)

NSH vitamin D in Febuary 2020 was only 53 (50-200)

So ferritin has improved with the iron supplementation but still not optimal. Vitamin D has improved as well, but still not optimal. I was really shocked to see how low her B12 and folate are after 3 months of supplementation. I’ve advised asking for a coeliac test to rule that out, although she doesn’t have any symptoms of it.

Her RBC has fallen slightly from March to June, it’s 4.16 (3.8-5). Am I right in thinking this could well be due to the low folate and B12? Her serum iron has also fallen slightly since March (now 13.13 umol/l, range 5.8-34.5).

There are lots of other results I can provide if relevant.

I have said she needs to ask her GP for testing for pernicious anaemia. What tests do they actually need to do, just so we know they’re doing the right ones? Are there many GP’s who know what an Active B12 test is, I know mine had never heard of it?

Could B12 and folate this low be likely reasons for missing periods/spotting only?

She's a wonderful primary school teacher, she has been working throughout lockdown, so obviously it's vital that she is in the best health possible.

Thanks a lot for any advice.

[JanD236]

I’ve not heard that low B12 and folate could be a cause (although it’s not done thing I’ve looked into as I’m past all that now). However, about 10 years before I was diagnosed with PA I had Graves’ disease (overactive thyroid) and my main symptoms were breathlessness, high heart rate and my periods stopped.

The low folate and B12 obviously need to be brought to her GP’s attention and treated and I would recommend asking for a thyroid tests at the same time.

[Lesleyg13 in reply to JanD236]

Thanks for your quick reply. Thyroid tests were includes in the Medichecks tests we ordered. To be honest that's what I was half expecting (I'm hypothyroid), but they look ok, no problem with antibodies either. She had glandular fever as a teenager which I know can lead to thryoid problems further down the line, but no sign in the TFT's as yet. Thanks again.

[Lesleyg13 in reply to JanD236]

Just found this link:

Vitamin B12 and periods are also known to be related in another way. Insufficient vitamin B12 may cause menstrual problems or the possibly the absence of menstruation entirely.

livestrong.com/article/5059...

[fbirder]

She needs to make an appointment ASAP to get the B12 and folate deficiencies sorted. The GP may find this useful regarding the 'active' B12 test. viapath.co.uk/our-tests/act...

Make sure that the B12 deficiency treatment has started before the folate deficiency is treated. The doc will probably want to give her 5000 mcg of folic acid a day, just to get the levels up. But that amount can exacerbate any nerve damage caused by the B12 deficiency.

[Lesleyg13 in reply to fbirder]

Thank you very much for that link. Has shocked me that after three months of taking a B complex her levels are still so low. Having said that her mother needs B12 injections although was never tested for PA before they were started. Am I right in thinking it can be hereditary?

[fbirder in reply to Lesleyg13]

There is definitely a genetic element to PA as it does seem to run in families.

She almost certainly does have PA. The most common cause of a non-dietary B12 deficiency is PA. The tablets would do nothing at all. It would also hinder absorption of folic acid from foods, but not from pills, so it's surprising that folate is also low.

[Lesleyg13 in reply to fbirder]

I didn't realise the NHS acknowledges PA as the most common cause of B12 deficiency in the UK full stop:

nhs.uk/conditions/vitamin-b...

"pernicious anaemia – where your immune system attacks healthy cells in your stomach, preventing your body absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK"

On the same page they also say it can cause temporary fertility, so that fits the missing period link.

[Jennygal]

I too had medichecks blood tests done and my active b12 was 22. I took it straight to the doctor who tested for PA. This test came back negative - but it can be very inaccurate. I was given supplements. I did not take the ones the Doctor prescribed because they were rubbish, so I bought much stronger ones myself. After three months my levels had crept up to 37. I went back to the doctors and begged for injections. I was getting them every 12 weeks - but after little improvement they were changed to every eight weeks. I am now in the process of begging for them more regularly and if this fails, I will self inject. I know I am not absorbing properly - but it is really so hard to know where to turn. I hope your friends daughter gets the help she needs. x

[Lesleyg13 in reply to Jennygal]

Thanks for your message Jenny. I must admit I'm not expecting it to be easy for her to get properly treated. She has been taking a B complex for three months with no effect on her B12 and folate levels, so that would be pointless - but it still wouldn't suprise me if the GP suggests that route.

As it happens I already give my husband B12 injections, buying them from Germany. After a battle his GP agreed to 3 monthly injections but we soon found that wasn't frequent enough for him, and it was clear they wouldn't give them any more frequently, so I know what you're going through. Same old story really isn't it.

She lives 3 hours away from us, and I don't see her very frequently. It may well end up that I have to make sure I see her more often so that I can give her the injections myself!

I had to resort to self treating for my hypothyroidism last year as I wasn't quite ill enough in their eyes to be treated by the NHS, even though I was feeling awful. Although it obviously costs money to go the self treating route, it is less stressful. Sounds like you will be better off going the DIY route soon too. Life's too short to suffer like that isn't it.