HiI'm just looking some advice on recent NHS b12 and folate results:
B12 284 (197-779)
Folate. 4.6 (3-26)
Of course GP receptionist said all 'normal " on phone but I have asked for a print out of results and will pick them up tomorrow.
I had asked my GP if I could be tested for intrinsic factor antibodies also but receptionist said it hasn't been done.
My mum had PA and had B12 injections. I'm am concerned as I do have quite alot of symptoms of B12 deficiency esp neurological ones. Does anyone know if b12 deficiency can cause head tremor as my tremor has got worse over past couple of months?
I'm concerned that GP won't do any further testing. I have been holding off with supplements until tests were done.
Any advice would be much appreciated
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Hollybushroad
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Thank you for your reply. Previous to getting bloods done at GPs I had done a Monitor My Health test which showed active B12 was 44 ( 38- 150) folate 3.2 ( 3-26) if that helps. They recommended further MMA testing but I see the test is quite expensive.My GP dismissed MMA testing when I mentioned it.
I really am concerned I have PA as I mentioned in previous post that my Mum had it too. I'm so tempted to start supplementing but afraid to incase I need further tests and therefore slew results.
Do you think doing medicheclks MMA test would clarify it it was
It isn't easy for GPs to get MMA tests ordered, but haematologists use this test as a secondary indication where a B12 serum level is not below range but symptoms are pointing that way. Confirming a suspicion. The problem being how to access a haematologist (via GP), and how long the waiting-list is.
With B12 not there to form a link with MMA that takes it on to be utilised at cell/tissue level, the waiting MMA will build up in the bloodstream - sometimes to quite high levels. This build-up will disperse as soon as B12 is replenished. So should drop down to normal levels certainly by the time the loading dose (6 injections) are done.
So MMA should be tested before B12 injections, if B12 deficiency is suspected. Since you suspect that inherited PA is the problem, you might get your GP to be more helpful with a high MMA result, but some GPs may choose to ignore private test results. Also, renal problems and SIBO need to be ruled out as possible causes of raised/high MMA.
MMA will only remain raised after B12 injections are started if there is a problem with the process - in which case, functional B12 deficiency would be diagnosed.
As Nackapan pointed out, the IFab test result could be negative even with PA (50% of those with PA will test negative) - although a positive result at 95% is as good as a guarantee. This means that you could keep testing until getting a positive result, or far more likely would be that your GP is unaware of these statistics and would go by your first result.
Martyn Hooper, founder of the Pernicious Anaemia Society, had three such tests before getting a positive result.
Thank you for your reply I'm quite new to the forum and not very tech savey so I'm not sure if when I click reply button under your post if is just you who gets an alert or do all members who have contributed to my post also get an alert as this obviously is my intention so I get as much feedback as possible.
If you click reply under my reply, you can write back and I will be notified. If you click on the heart, I will be notified too - just means you "like" my reply, but don't need to add anything.
Thank you for your reply.I'm fairly new to all this forum but have joined the Thyroid Uk forum as I have also got hashimotos. I'm not sure when I click reply under your post if it's just you who gets an alert to my msg or do all members who have contributed to my post also get an alert???
Obviously my aim is to put my posts out to all contributors to my post.
Sorry but I'm a bit of a dinosaur when it comes to technology 🦕
UK guidance on B12 deficiency makes it clear that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.
From NHS B12 deficiency article...
"Functional vitamin B12 deficiency
Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells."
From BSH Cobalamin and Folate Guidelines summary
"In the presence of discordance between test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have. Might be a good article to pass to your GP.
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
One thing I'd urge you to do is to track down the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. Not sure about NI.
If you can't find them online or by searching this forum, best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of these local guidelines are unhelpful. See blog post below.
Thank you all so much for your very helpful replies. I see I have alot of reading up to do!I got printed copy of my GP lab results today for my own record:
Serum b12 284 Ng/L (197-771)
Serum folate. 4.6ug/L (3.0-26.8)
When I spoke to GP on phone last week to arrange bloods I asked her to request IFABs given my mum had PA but from my results I see it wasn't done. When nurse was taking my bloods on Monday I double checked with her if IFABS were being done and she said yes so not sure what has gone wrong ( maybe lab)
It says on my copy that symptoms of B12 deficiency may be seen at lower end of reference range eg less than 300ng/L ( mine again is 284)
I looked back on previous b12 results from a few yrs ago
4//11/2015: Serum b12 390 Ng/L ( no ref range shown)
Serum folate 15.4 ( no ref range shown)
19/11/ 15. 421 Ng/L ( no ref range)
Serum folate 13.4ug/L ( no ref range shown)
Can't remember why the above 2 tests were done so closely together)
No AFABs done with these tests.
06/04/17 serum b12 1646ng/L (high)
Serum folate 11.9 ug/L
I definitely do remember I was selfsupplementing with b12 at that time. Think I just wanted to try it for energy but can't remember if it did help😉 I stopped when I seen my high b12 result.
Am I correct in saying if I did have pernicious anaemia that self supplementing would just raise serum b12 but not actually reach the cells????
Recent Monitor my Health anaemia panel (last month):
Haemoglobin 128/L
Ferritin 80 ugL
TSATS 18%
Active B12. 44pmol/L
Folate 3.2 ug/L
Does Folate automatically drop when b12 drops?
Thank you all so much for your help. Much appreciated
Folate does not automatically drop with b12. Many find that it does anyway, but with some folate goes high instead. hard to say definitively. But once you start b12, you will need folate as well, they need each other to work properly.
Do not start folate yet, you must treat b12 first. Folate without b12 can cause worsening nerve damage.
I had the same problem as you. Supps raised serum levels but did nothing for symptoms, as i explained below. Other people here report the same thing. Then when we stop, levels fall back down, potentially going lower and lower. As yours have.
Having immediate relatives with PA makes you more likely to have it too. So would not surprise me that you'd have PA.
Do push for IFAB testing. Let us know if you need letter templates.
Thank you so much for your reply. I'm not very tech savvy. Can you just clarify for me if when I click reply button under your reply post if it's just you who gets an alert or do all members who have contributed to my post also get an alert?? as this is obviously my aim so that I get as much feedback as possible
Hiya sneedle, look up 'subacute combined degeneration of the spinal cord', SACD. That is what they see on an MRI when there is sufficient demyelination. I do not know how early they can detect it. I have other info on lesions seen in the brain itself. If you make a new post I can share what I have (if i saved it, lol). You are really on a roll this weekend with all your questions, love it! 🤩
Ha yes I'm glued to Health Unlocked this weekend, gotta move things on!😀
My husband just said 'Hmm looks like you're addicted to health forums now ' and got a lecture about how I'm now on the second wave of information gathering (the first wave being when I joined about four months ago and started testing and supplementing). 😁
LOL. Well yessss dear I am indeed addicted to fully researching my condition(s) and learning from others who have already walked in my shoes
I have got that remark many many times from all corners (the time my mother said it hurt the most) but heyyyy hooooo I'm doing so much better! (and she's also on injections now no-thanks-very-much to her neurologist who said b12 was outside their area of expertise 😂😜)
You also need to have your ferritin checked - iron levels need to be good for B12 injections to work properly, if you go that way. Having not had the relevant PA tests myself, I urge you to get those done, expensive or not, before you start treatment as it's going to be much harder to get a conclusive result afterwards.
Thank you for your reply.I'm new to forum and not very tech savvy ( to say the least).
Can you clarify if when I press reply button under your post if it's just you who gets an alert or do all members who have contributed to my post also get an alert as this is obviously my aim so as I get as much feedback as possible??
The posts are public and so are all replies. If you want a private conversation press the icon button of the person you want to chat with and select chat - then it’s private.
My Mum has autoimmune P.A. I had awful symptoms with a result of 250. Elderly G.P. patted me gently on the hand and said there's NO WAY that you have a problem with a reading like that - do you want antidepressants!!!! Made another appointment with the head G.P. and refused to move until she ordered an IFAB. Went back once the test was back to her still being dismissive, until she saw the positive result! (Thankfully it was positive, otherwise I would've been up the creek without a paddle)
It just shows that 'Normal' doesn't mean there isn't a problem. If I hadn't stuck to my guns because I knew that something was wrong, I hate to think what state I would be in now, or if I would even still be here!
Thank you for your reply.Im new to forum and not very tech savvy so not sure when I click reply button under your post if it's just you who gets an alert or do all members who have contributed to my post also get an alert??
Obviously my aim is for my posts to be sent to all members who have contributed to my post
Hi Holly, you already got a lot of great advice. I just wanted to send you the link to Sally Pacholok's documentary on " Diagnosing and Treating Vitamin B12 Deficiency ". One of the case studies in this documentary is a lady with tremors, including head tremors. She looks like she has Parkinson's, and it was all due to B12. I used to get all sorts of tremors as well, and it was 100% due to functional B12 deficiency. As Sleepybunny says, some of the content may be upsetting or difficult to watch. But it is a great documentary.
Sorry it's on a weird youtube channel, but the original one has disappeared. It used to be together with her other movie, the dramatization of her B12 journey and how she came about to write her book. Also a great movie, if not frustrating to see that nothing has changed in the intervening decades, except for the publication of her wonderful books. youtube.com/watch?v=OvMxJ6G...
I'm actually really scared now as I seen a neurologist about my head tremor about 15 yrs ago.I Had MRI but nothing untoward. Can't remember what bloods were done then.He said it was spasmodic torticollis (cervical dystonia) unknown cause.
He referred me to Neurophysiologist for botulinum toxin injections which I have since been getting every 3 months into my neck muscles (more like every 6 months since COVID)
The Botox inj helps just a little with aching muscles but doesn't relieve head tremor.
The tremor has definitely got worse over past 3 months and I'm very conscious of it in public. Even when I'm lying down on my pillow on my side the tremor is still there.
I'm really concerned now that perhaps after all these yrs that perhaps I have been misdiagnosed with cervical dystonia of UNKNOWN CAUSE that it may actually be due to PA.
My GP would never understand all this ( she doesn't know what cervical dystonia means)so I don't think she would be much help to me.
All we can suggest is that your doctor / you follow the guidelines - every other day injections when neurological symptoms are present. Sufficient folate/folic acid. If the tremors are due to b12, you will likely see some improvement. But how much improvement, no one can say. I don't want to give you any false hope, so all i can say is, try it and see how it goes.
I hope you will be able to get tested & start treatment quickly. If you want to do private testing, i think medichecks does mma, but your doctors may or may not accept it. Let me find the link.
I started self injecting because all b12 tests were 'normal' but i had all the symptoms.
I'm fairly new to all this forum chat. Can you just confirm with me jade_s if I click reply button under your post if it's just you who gets an alert tomy reply or do allmembers who have been contributing to my post get an alert?? Obviously my aim is for all contributors to respond.Sorry but I'm a bit of a dinosaur when it comes to technology 🦖
Hi Holly, yes if you reply using the blue reply button under someone's reply, then yes that person (and only that person) gets notified (as i did)
The person who starts a whole new post (you in this case) always gets notified no matter who replies , whether or not they reply to you with the blue button or the standard reply button.
As already mentioned, the 'like' button also gives a liked notification and is useful when you want to say 'thanks' or 'i've seen this' but don't have the energy or inclination to write a reply
Thank you jade_s for your reply.I know this might sound silly but I'm still struggling to understand the role of B12 injections in PA. Ie if I supplemented with high strength sublingual b12 would it not do same job as from what I gather it bypasses the digestive tract thus eliminating any possible absorption issues
( I had bought the Nature Provides 3000 sublingual drops and Thorne basic b complex but have held off taking them until I had clarity re diagnosis)
I had been looking myself at the medichecks b12 panel....as you say it's very expensive.
I sent a reply to sleepbunny after the info they sent me asking a few further questions ( thought at that stage all contributors got alert but you have since clarified the issue)
I wonder if you could refer to the post I sent to them to clarify a few questions I had asked SB
Hi Holly you're welcome! No question is too silly & you ask something that is much debated here. Some people with PA find that high doses of sublingual b12 in between injections do help, a few take massive doses (15,000 mcg sublingual), but basically we still have malabsorption.
Some people (research) say that 1% is passively absorbed. I don't really believe it completely, after decades of taking 1000mcg B12 I still ended up with numb arms & a host of other issues. Many others here also cannot manage on sublinguals, no matter how much they take. Well my serum levels went a bit, but they're much higher on injections. I tried 10,000 mcg for a month but it was expensive & it did nothing.
The B12 molecule itself is quite large compared to other vitamins, and requires many other "transporter " molecules to get around, like intrinsic factor. There is no mechanism i know of that will transport b12 from your mouth to your bloodstream, it will go via your intestine. What does happen in your mouth is that it will bind to the transcobalamin 1 transporter (haptocorrin if i remember correctly), but this too does not go to the bloodstream.
So i can only surmise that people who can manage somewhat on tablets still have functioning intrinsic factor, to get it into the bloodstream, and transcobalamin 2, to get it into cells. But no guarantee that it will work for a typical PA patient.
That's why injections are still the gold standard treatment - they completely bypass the faulty intrinsic factor mechanism & can also bypass faulty transcobalamin transport issues (as with genetic cobalamin diseases).
I hope i have managed to answer your question. If not please continue asking.
I'm typing on my small phone screen & so i tend to keep it short thus maybe more confusing lol.
Tremor and b12 are a thing. Relatively unusual but definitely a thing. A trial of b12 shots would be sensible given that your b12 serum levels are in the 200-350 range where b12 deficiency is possible and if symptoms are present then treatment should commence.
The NICE and BMA guidelines recommend this approach.
If you want to alert someone when you're not replying to their post, you can tag them
Type @ and their username, no spaces. Like this: @jade_s , And then you will get a dropdown box. You must click on their name to activate the tag, then it will look like this, in blue: Hollybushroad (wasn't able to tag myself LOL).
That person will get notified. You should now have 2 notif's from me, 1 that i replied, and 1 that you were tagged.
I was in the same position as you. Private testing revealed both vit b12 and iron deficiency anaemia. However, when retested on nhs my vit b12 was 300+ but my private one was 39. It was then pointed out to me that the private one was the real score because it was active. Nhs only measure total vit b12. It’s nonsense! My doctor decided to give me three months of high vit b12 and iron and I started to feel so much better. My throbbing head felt better and my neurological problems, cramps and movement dysfunction were less painful. I now take daily tablets for both. If I miss a dose in the day I’m reminded by evening as all my restlessness and uncontrollable movement comes back. It’s now impossible to monitor my levels so I’m not sure if I’m dosing myself correctly - it’s not ideal! I know though, I can’t be without these and all the other vitamins that have been prescribed over the years. I get my vitamin vit b12 and iron from Natures Best.
Yes sounds similar to my situation alright. Yes active B12 is the more accurate result as it reflects what's in the actual cells rather than what's in the serum.I don't understand why NHS don't use this test. (Probably financial reasons no doubt)
I've just spent 3 mornings trying to get through to my surgery to speak to GP re further testing as mum had PA without success getting through. I have now lost the will. I am going to order the medichecks MMA/ IFAB test for clarification on my B12 status in case I need injections like my mum.
Glad to hear you have had success and feeling better
Active B12 measures the amount of B12 carried on the active B12 transporter protein (Transcobalamin 2) in the blood. It is not a measurement of whether B12 is reaching cells, for which MMA (methylmalonic acid), although an indirect measurement, is probably more conclusive.
Active B12 is somewhat more expensive but as far as I know it has not been established that active B12 testing is reliably better at detecting deficiency than serum B12 measurement, otherwise I think it would supplant serum B12 testing as the standard lab test for B12 deficiency.
It is more common when B12 serum reads low to run an MMA and/or Homocysteine test to confirm deficiency. Unfortunately none of these tests are absolutely conclusive , making B12 deficiency a very tricky thing to diagnose. A lot of overconfident GP's conclude that there is no B12 deficiency or that it is not very serious based on lab results, which unfortunately can result in missed diagnoses and serious(sometimes permanent) consequences for the patients as we have all found.
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