Morning I actually got to see my GP last night! Thankfully she listened ( borderline B12 and very low folate) this is after speaking to two other Gps in the surgery who didn’t believe me ☹️
Anyway she suggest Pernicious Anemia! Woohoo! So have some blood tests to follow ❤️
The NHS offer a PA antibody blood test, however it only picks up around 50% of PA cases so a negative result doesn't mean you dont have it. If your B12 level doesnt improve on high dose tablets then its likely you'll need injections. This happened to me and I get jabs every 2 months.
Thank you 🙏
My Gp did mention chronic fatigue syndrome! I bet a lot of cfs people have Low or deficient B12 🙈
Ah yes the great CFS cop out lol. I wouldn't even entertain being labelled with CFS until every other cause including PA has been ruled out. To my mind CFS/Fibro and IBS are dustbin diagnosis from lazy doctors.
Its all to convenient to label someone with chronic fatigue as doctors know there's no cure and not much in the way of effective management. So it gets you out of the door with the minimum effort and expense to the surgery.
Absolutely 👍
I agree with this. Many on PAS (Pernicious Anaemia Society) forum on HU have a ME/CFS or Fibromyalgia diagnosis in their records.
ME/CFS is a diagnosis of exclusion. As you mention, all other possible causes should be ruled out first.
I'm not saying thre are no cases of Fibro or CFS, I have PA and underactive thyroid but l got labelled with Fibro years ago. I have Ehlers Danlos, a connective tissue disorder which certainly explains most of my 'Fibro' symptoms.
Being treated with regular B12 jabs and now Levothyroxine has certainly helped with some, but not all my symptoms and I know on the HU Fibro forum that there are those who've definitively had PA and Hypothyroid ruled out.
Fibro is definitely a real disorder and a very disabling one, but that doctors must rule out other common disorders first before deciding that someone has Fibro/ CFS.
I suspect many are labelled as such because its an easy diagnosis and requires minimal testing. Whereas vitamin and mineral deficiencies and thyroid testing should be the very minimum GP's offer in the first instance.
Hi Sparklingsunshine thank you the information ☺️ it’s interesting isn’t it that the vits and minerals are left out! My mum was diagnosed with Fibro About 3 years ago! She’s been on omeprazole for years and that’s another whole story ☹️
Omeprazole has been associated with low B12 levels in some studies.
Search online for "PPI drugs B12 deficiency uk" for more info.
Hi Doris11,
I'm a regular poster on the Pernicious Anaemia Society forum on HU and thought you might find these links helpful especially if you're in UK.
PAS (Pernicious Anaemia Society)
Charity based in Wales, UK. Has overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of the PAS forum on HU.
B12info.com
Testing for PA
pernicious-anaemia-society....
A negative result in the Intrinsic factor Antibody (IFA/IFAb) test does not rule out PA. It's possible to have Antibody Negative PA.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US book)
NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
This page outlines recommended treatment patterns for B12 deficiency in UK.
cks.nice.org.uk/topics/anae...
NICE are currently developing new B12 deficiency guidelines to be published in Jan 2024.
I often urge UK people on PAS forum to track down the local B12 deficiency guidelines that their ICB (Integrated Care Board) in England or Health Board in Scotland/Wales uses and compare them with NICE CKS document.
It's quite common for people on PAS forum to find that health professionals have a limited understanding of PA and B12 deficiency.
I'm not medically trained.
I would just like to add that many do not have any such guidelines and one may actually experience some nuisance. See her for example wypartnership.co.uk/applica... via FIO.
Hi, I'm glad you've found a GP who will listen to you and is prepared to investigate further. Would you mind me asking if your B12 and folate results were classed as within normal range? Mine are both low but within range and I have a GP appointment next week.
PS folate less than 7 ug/l I think is deficient?
Do make a new post with your vitamin results (with reference ranges) for members to comment.
I had already posted my results a little while ago, I was just curious if the GP was supportive when results are classed as 'within range'. Thanks
Thank you Jaydee1507 i was answering the ladies question 🙏
Hi there, there in the range of the lab that’s used (178-2000) mine were 221ng/L so I’m classed as borderline! My folate is 3! Which is under I think? I have been taking a good vit B complex for a year but my results are very low considering. I had a private test by Medichecks and my active B12 was 70 in 2022 and this September were 49 and I have been having symptoms of fatigue, horrendous brain fog! Even worse than when I was diagnosed with Hypothyroidism! I wasn’t believed by two Drs (was told there normal) but luckily got to see my GP eventually so good luck ❤️❤️ have a look at the NICE guidelines for B12 deficiency and folate deficiency! I quoted them a few times ❤️ good luck 🤞
That's really interesting. Thanks for your reply, I hadn't thought about the NICE guidelines - great idea. I hope you get your levels up and feel better soon. x
❤️❤️❤️❤️
The NICE guidelines for B12 deficiency/PA are not yet published (early next year, I think).
Vitamin B12 deficiency in over 16s: diagnosis and management
In development [GID-NG10176] Expected publication date: 06 March 2024
nice.org.uk/guidance/indeve...
The NICE Clinical Knowledge Summary for folate and B12 is here:
Anaemia - B12 and folate deficiency
Last revised in April 2023
cks.nice.org.uk/topics/anae...
And very worth joining the Pernicious Anaemia Society forum, here:
Thanks so much.
PAS (Pernicious Anaemia Society) forum helped me a lot when I was struggling to get my B12 deficiency recognised.
The PAS forum is used by people who have B12 deficiency for a variety of reasons, not just those with PA.
Blog post about being symptomatic for B12 deficiency with a normal range serum result.
b12info.com/your-serum-b12-...
Films and videos about PA and B12 deficiency
Some of these may have details that could be upsetting.
pernicious-anaemia-society....
I mentioned PAS website and B12info.com website in an earlier reply.
A few other B12 websites
The B12 society (UK charity based in Scotland).
B12d.org (UK website)
Not sure how active this website is.
B12 Awareness (US website)
This was set up by Sally Pacholok, a US campaigner on B12 issues.
Two Dutch B12 websites with English articles.
Stitchting B12 Tekort
stichtingb12tekort.nl/english/
B12 Institute - Netherlands
Has useful lists of symptoms and causes.
Finally beginning to feel better!
Finally got blood results (kindof)
The final straw
Daughter's test results back finally!!
