I have functional B12 deficiency and I have been taking injections for this for 4 years.
I have been getting some distressing symptoms that are now affecting my daily life, mood swings, cold and sweaty hands, cold feet, intolerance to stress, hard stool, fatigue, unexplained weight gain, hoarse voice in the morning, periods coming late and sometimes heavy or light, hair loss, dry gritty eyes.
Just wondering what it could be if my B12 level is really good?
Thank you for reading.
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pisces0222
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I'd add to that...has your GP screened for auto-antibodies (a blood test)... may be another underlying and undiagnosed autoimmune condition? Worth checking out...
I tested positive for anti nuclear antibodies but then they went negative again, doctors couldn’t explain why and not even an immunologist I was seeing!
One possibility is that you need extra injections . You don’t say how often you receive B12 injections . You could ask your GP to give you extra injections. You can’t overdose on B12 and even if this is not the reason for the return of your symptoms , no harm is done . It might be difficult to get your GP to agree to this . If that were the case , you could consider self-injecting. Many of us on this forum do already . I assume that you know that you should be making sure that you are getting B9 ,( folate in food and folic acid in a tablet.). This works together with B12 , so it’s important .
I was diagnosed with functional B12 deficiency in 2016. I read Turner and Talbot's research paper (Functional Vitamin B12 Deficiency, 2009) since I could find no other real information regarding treatment frequency and was struggling on established NHS B12 deficiency treatment regimes offered. The research advice, although fairly vague, is to have frequent injections.
I self-injected eventually, and found that alternate-day injections, over time, could usually keep nearly all of my symptoms at bay, and even get rid of a few. It took 2 years to also maintain healthy folate and ferritin levels. I now have experimented with reducing injections to about 2 a week and will see how that goes, not wishing to lose all that I have finally gained. Doing okay, and nothing going in the wrong direction apart from irregular heartbeat.
Vitamin D I get on prescription for osteoporosis of the spine- to be Dexascan checked in April- and did a postal full-panel thyroid blood test a while back which showed that thyroid showing signs of struggling (unsurprisingly) but still okay.
All of these symptoms have a familiar ring to me, except hard stools (I have had daily diarrhoea for about 5 years- that one symptom stubbornly remains) and periods (I'm 61 !)
My GP sees hair loss as being more likely folate/ ferritin than B12, although it seems to be on most B12 deficiency lists too (not NHS ones- the ones listed by PAS and B12.org etc)
Difficult to untangle which particular complaint belongs to which vitamin deficiency.
Any of your repliers might have the answer/s, so have all of the above checked:
folate, ferritin, vitamin D and thyroid (NHS usually only does 1 or 2 thyroid tests: TSH and T4- you might want a bigger picture).
GP says ferritin can cause symptoms if below 60 ug/L (including hair loss) but Oral Health consultant (looking at my tongue and corners of mouth - I've posted photos previously if you want to see them) says prefers ferritin level at around 80 ug/L. Folate optimal top 1/3 of range too.
Add a request for auto-antibody screening as wisely suggested by Foggyme . Autoimmune problems often seem to encourage like company.
Serum B12 will be high I'm guessing. Once injections started, mine was always over measureable amount -at over 2000ng/L. Once GP had seen this level twice, she was happy not to bother again. You didn't mention frequency of injections that worked for you prior to this latest problem but wedgewood is right, it could need adjusting.
It is always unnerving to take a downward turn without obvious cause. There will be one, and as you already know, you can get better because you were better.
Yeah thyroid was abnormal and then normal so thyroid was then ruled out. Vit D deficiency too, 8 years I’ve had that, folate anaemia, too long to count, I take folic acid for that. Iron anaemia no longer a concern either.
My ferritin and folate levels never went out of range just stubbornly remaining at low end.
After supplements on top of multivitamin& mineral tablet daily, they would look good for a short while - and then drop again to the bottom end. Which, unless history was known and previous results checked would probably appear as "normal, no action" on blood test results.
Another good reason for picking a good observant GP and sticking with her/him.
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, referral requests, any other supportive evidence.
GPs can find treatment info in their BNF book Chapter 9 Section 1.2
You could draw your GPs attention to consequences of under treatment.
If neuro symptoms present, have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.
Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists as well as GPs.
Nope, never tested for coeliac disease. I am in the UK, yes. And have neurological symptoms. Also my ears have been randomly popping today but I have put it down to my mind playing games with me.
Regards to haematology, I was seeing them but not now, discharged 2017. Never seen a neurologist.
I had an ear popping symptom which I now believe was muscles in my ear twitching, probably due to nerve damge from nerves connected to muscles.
Tinnitus is a common symptom in people with b12 deficiency.
If you have neuro symptoms, you should be getting injections more often than 3 monthly.
Have a look at letter writing link in my other post.
It's possible to develop permanent neuro damage with Functional B12 deficiency if under treated.
See article Cherylclaire mentioned by Turner.
Might be worth asking for a referral to neurologist and perhaps another referral to a haematologist.
I used to put referral requests into a brief, polite letter to GP along with supportive evidence eg symptoms list, test results, diagnoses, relevant family and personal medical history, extracts from UK documents etc
For those interested re hair loss/thinning, to back up Cherylclaire regarding
"GP says ferritin can cause symptoms if below 60 ug/L (including hair loss)"
A few months ago, a GP said my Ferritin level needed to be above 70 before she could refer me (hair very much thining on top/front, distressing me) so I started taking iron (Bisglycinate, as can't tolerate the other forms) and, after only a few months, +/- 6 months, my hair looks very much better.
So, advice - if hair thinning, get Ferritin levels checked and, if lower than 70 / 80 'ish, start taking some iron
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