Advice or Recommendations

[orbette]

Around 7 and a half years ago after having blood tests for Lupus I was found to be deficient in B12 with a level of 187. I was straight away put on loading injections then kept on injections every 3 months for life, or as I thought. I've had various nightmares with different surgeries but until recently kept on the jabs. My last jab before I moved GP was in November 2016.

When I moved, I was asked to do blood tests (3rd Jan 2017):

B12 - 345 pg/ml (normal range 197-771)

Folate - 5.6 ng/ml (normal range 3.9-20)

I was also found to be severely vitamin D deficient so I was given tablets to bring that back to normal. I was sent to a haematologist to find out if I had PA or not as no one had previously looked into it properly, and the test came back negative. She requested the GP to assess my bloods and B12 after 6 months and then 12 months but was sure that my B12 deficiency was no longer an issue.

I had my blood retaken on 1st September 2017:

B12 - 289 pg/ml (normal range 197-771)

Folate - 2.8 ng/ml (normal range 2.9-26.8)

Also Ferritin - 208 ug/l (normal range 13-150)

Just spoke to the doctor and apparently I don't need B12 injections still, though she's giving me a month of folate and my iron is okay.

I feel fobbed off to be honest, I don't feel well at all and it's obviously reduced over time even though my diet is animal heavy and I eat more veg and fruit than I used to. I've taken no supplements since the blood test in Jan.

So I would like to know good B12 supplements that I might be able to take, as I am not absorbing normally (which seems obvious) and also I really needed to just have a little rant because I am sick to death of being messed about with. I honestly don't feel like I can carry on for another 6 months to see if it gets lower again. Any advice gratefully received.

[4101]

Hello. This is my very first time responding to someone's post. I am so very new at this whole procedure that I was reluctant to post anything. You say you want to try supplements. Were the tablets you tried not helpful? Some people find help from tablets others from sublinguals. Then others have found help from patches or from nasal sprays. If none of those are helpful then it's time to move to Jabs. What do you feel you want to try. We are all so different it's just a matter of trial and error. In my case the Jabs we're becoming painful so I tried the sublinguals.

[orbette in reply to 4101]

Hi 4101

I haven't been on any tablets so far and only today have been prescribed folate, so I'm not looking to supplement that. Ideally I would be back on injections but as I mentioned my GP thinks I'm within the normal range and so don't need them. Hence why I wanted to find out what people had tried and what might be good to use as a B12 supplement seeing as I will be getting no help from my GP.

[4101 in reply to orbette]

I'm sorry that I misunderstood you. I thought you said you were taking B12 tablets. If you're interested in self-injections then there are people more qualified than I that can help you. I am only taking sublinguals. Good luck to you

[Gambit62 Administrator]

negative result for IFA is a long way from proving that you don't have PA as it gives false negatives 40-60% of the time depending on the assay method - would be good if haematologist would actually refer back to the standards they are supposed to be applying rather than ...

to be honest think you have every right to rant and every right to feel that you are being messed about - you are being messed about.

you could try joining and contacting the PAS about how to approach tackling your GP about getting your injections reinstated

pernicious-anaemia-society....

In terms of supplements you could try really high dose oral (1000mcg +), sublingual sprays or tablets - of similar strength - nasal sprays or patches - there is a lot of choice if you look, for example at amazon -

The downside is that supplementing could affect the next set of blood tests. Without supplementing there is a chance that levels will continue to show downward trend/a more significant drop - with supplementation they might not and that might mean that injections don't get reinstated.

There is also the option to source B12 from outside the UK and inject yourself.

[JMN2017]

Hi orbette

So sorry to hear all this. It's amazing how doctors seem so ignorant of how to treat and maintain B12 deficiency

It seems to me you have two choices now. Either to go without any supplement, wait 6 months, get all your symptoms back and hope the GP will treat your non-existent B12 level ....

OR supplement effectively but you'd be doing this on your own, of course, and without the support of your GP.

If you do use any supplements prior to further testing, you will skew the results and it will more likely look as if you are within range, so not get the treatment you need. So, if you do decide to supplement, I would suggest self-injecting but then you will likely never get a diagnosis.

It's scandelous, in my opinion, especially as you've previously been diagnosed but now your current GP isn't wanting to accept previous tests.

[orbette]

Thanks both. I suppose it's difficult because knowing how I feel now, can I bear to get worse over the next six months? It would make life incredibly difficult, and my job. I have the folic acid tablets now via the doctor so I'll see if they help, and to be honest I may supplement. Upside is I might feel better, downside they might make me feel better! Or they might not work at all!

I tried to explain to my partner why it was annoying earlier and created a new analogy that I may use from now on. It's like having a sack of apples and when some of the apples are taken they give you new apples, but then they stop giving you new apples, and you then half half a bag, then a quarter of a bag. So you ask for more apples but they say you don't need any, because you still have apples.

I'll admit it needs some work.