Morning, I've been having B12 injections every 10 weeks since August but my tingling feet symptom hasn't ever improved. Its got worse over the last few months and I now feel it all the time rather than just at night and my feet feel numb a little painful when walking.
I've spoken to my GP who has ordered blood tests to see what my B12 is doing. I have timed this as close to my next injection has possible (blood test 9th June, next injection 13th) but I have been supplementing with 5000mcg B12 sublingual. I want to ensure this doesn't interfere with the bloods, would anyone be able to recommend when I would be best to stop the supplement so it doesn't interfere with the blood result. Thank you.
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AngelaWoo
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You say you have been having B12 injections every 10wks so I would have thought it common sense your B12 will now be high due to the injections. Due to your now high levels 'do not' let your Dr try and stop your treatment as it is pointless rechecking your bloods once treatment has started.
Very often symptoms will get worse once treatment has started ( it's what known as the healing process ) I experienced exactly the same. You may need injections more frequently but over time the symptoms will lessen.
Many Drs havn't a clue when it comes to treating the condition but you yourself can learn a lot from other's on this site. Stick with it remember that your levels will come back as high thats why it is well docummentednot toretest once treatment has started, Also remember you cannot overdose on B12. I am not medicaly trained but speak from experience.
I dont understand why with PA ppl are only seemingly taking b12 injections every 10 wks and no folic acid. In b12 groups in UK, USA, Canada, India, we r taking 5 mg folic acid daily as it is a cofactor with b12, and taking b12 almost daily in order to get well. It is water soluable thus no harm. It is recommended. Altho u can take weekly if u want to. Also iron, potassium, and magnesium as they become deficient while taking b12. In seeking blood tests for b12 deficiency, u check b12serum, MMA, MCV, homocysteine., folic acid which can be a separate deficiency in itself.
It's because you don't need 5mg daily folate unless you have a folate deficiency.
And folate or folic acid can very well do harm, it is not the same as B12.
It's wonky science that's akin to a Chinese whisper (or whatever the more PC equivalent phrase would be now). If you have a b12 deficiency and your folate is fine, then you need more B12 to address the deficiency. Folate is a co-factor in the body, but so are many other B vitamins, including B1 and B6 when it come to nerve repair.
It's frankly a worrying and cultish approach to insist that every take 5mg folic acid everyday without the advice of a doctor
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Have you tracked down local guidelines for your area of UK?
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following but the shorter the letter, the more likely the GP is to read it in my opinion.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Hi,I think folate, iron deficiency and thyroid issues can also cause tingling hands and feet. Have you had your other vitamins apart from b12 and thyroid checked?
Hi sparklyjenson, I do have regular bloods for thyroid they are usually borderline... worth following following up on that thanks. The GP gave me a diagnosis of CFS last August which I really was not too happy about, this came from her belief that I hadn't properly recovered from Bells Palsy which was at the same time B12 deficiency was discovered
GP adamant not to diagnosis PA despite father and gran both having it, had 8 month fight to get injections and 10 week top ups.
I finally have appointment at CFS clinic mid June, I am really hoping they listen to my concerns that B12 plays a huge part in how I feel, I have written a lot down! I saw a different GP a couple of weeks ago about HRT, she has been the only person who picked up on my tingling being B12 related, but asked me to make another appointment to talk about it. I was only able to speak to a nurse and it was her that ordered B12 bloods. I'll definitely be seeing the hopefully more knowledgeable GP once those tests are back in - I guess I'll find out then if she's any good because she should be disregarding the results. I'll go back to the GP after the CFS clinic in case there is anything positive I can take report back too
Good luck! Just a word of caution on the thyroid results. If you pop over to the thyroid uk forum you will see a lot of comments and distrust about ‘borderline’ blood results I.e. the ‘normal’ or ‘reference’ range is too wide and you can get plenty of physical symptoms within that range. Worth getting a copy of your results and posting them with the ranges on that site to get a view. I was borderline with pins and needles and exhaustion and lucky that a GP decided to put me on a therapeutic trial. It got rid of my pins and needles and exhaustion. Unfortunately now the pins and needles have come back so I’m increasing my dose and taking b12 and folate supplements to see if it makes a difference.
"The GP gave me a diagnosis of CFS last August which I really was not too happy about, this came from her belief that I hadn't properly recovered from Bells Palsy "
I hope your area of UK has a better attitude about ME/CFS than the area I lived in when I was diagnosed with it.
Things should have changed since I got the label but in some parts of UK, ME/CFS was treated more as a mental health condition than a neurological condition so watch out for this.
I was given a depression questionnaire which anyone with ME/CFS would have scored quite low on because one section was about how often you felt a lack of energy.
The link below is to a similar questionnaire.
It's aimed at health professionals and may have some details that could be upsetting.
Apologies if I've given you these links below before....
A diagnosis of ME/CFS should be a diagnosis of exclusion in UK.
It should not be diagnosed until all other possible diagnoses have been excluded.
NICE guidelines ME/CFS were reviewed in 2021 so hopefully your GP/specialist is aware of these more recent guidelines (maybe have a copy with you with relevant bits circled).
Section 1.2.2 includes the phrase "symptoms are not explained by another condition"
It's possible that they may still refer to the old version of the guidelines which in my opinion were not great.
I was labelled with all sorts of diagnoses including ME/CFS when I'm pretty sure it was B12 deficiency and having a label of ME/CFS for me meant that the GPs no longer wanted to try to find out what was wrong with me as the diagnostic box had been ticked.
"that I hadn't properly recovered from Bells Palsy"
Your tingling feet may not be B12 and taking more may not help. In fact if it isn’t helping then that may be your answer. Both B6 and B1 are involved in the nervous system and you may want to supplement either them or. B complex tablet to see if that helps. Be careful about B6 and stick to the RDA. It needs an acidic environment for uptake so maybe take it with something acidic. B1 is non toxic
Please correct me if I am wrong! I have had my MMA and homocysteine checked twice in this year of monthly b12 injections. Because they were both much much better (lower), I was under the impression that this means the B12 is getting into my cells and the shots are correcting my functional deficiency. I just ignore the B12 value as I am actively injecting. I haven’t had too much symptom relief yet but I suspect I waited far too long to address the deficiency. So couldn’t Angelo get some good info about how effective the supplementing is even if the actual B12 level is artificially high? I don’t want to kid myself that my functional deficiency is being adequately addressed. I have used the MMA tests and homocysteine as my measure. I am in the US. No folate test was recommended. I had to ask for it. Thanks.
We are all different and that is a problem. We have a varying selection from a vast range of symptoms, mostly not recognised as B12 deficiency symptoms by medical professionals. Their acknowledged list might not go much further than fatigue, to be honest.
Then there is the difference between those who have B12 deficiency, those who have functional B12 deficiency, and the rare few who get a pernicious anaemia diagnosis these days. And then those who had a PA diagnosis that was then discredited later ! Also those who have been misdiagnosed for years....
Some of us have started with B12 deficiency, then later folate and ferritin were found to be low or below range, then later vitamin D found to be low, or thyroid struggling - but not all of us have all of these problems.
If you have PA, you sometimes find unfortunately that another one or two autoimmune conditions will follow. If someone has close family members with PA, it stands to reason that if they have B12 deficiency too, it would be worth checking if PA is the cause. The trouble is how: the IFab test (intrinsic factor antibody test) will pick up between 40 and 60% of those with PA but that is all. So it cannot be used as a means of eliminating the possibility of PA. this is why the medical guidelines talk of PA (IFab neg).
As for functional B12 deficiency, you won't find much research or much understanding about this condition. Try M R Turner and K Talbot's research from 2009: Functional Vitamin B12 Deficiency. I was diagnosed with functional B12 deficiency because I was not responding to the B12 injections given to correct my B12 deficiency - in fact, I was getting worse even though I was given the same routine frequency as everyone else. My serum B12 was tested along with my MMA (probably the ONLY good reason for a retest after injections have started)- my B12 was above measurable amount by then, but my MMA was raised. This confirmed what my GP suspected and I had a diagnosis of functional B12 deficiency, which was confirmed for her by the testing lab, since she had also had renal problems checked for and eliminated as a possibility. The other likely reason, small intestine bacterial overgrowth (SIBO), was later also eliminated -by breath tests.
I have found that frequent injections - first administered by the surgery, then later by self injection, helped gradually reduce my symptoms. I do still have some that persist though, and some that return if I do too much or try to reduce injection frequency.
I still have my folate and ferritin checked about once a year, as can be difficult to stabilise, and have vitamin D and Raloxifene prescribed due to osteoporosis of the spine and osteopenia of the neck having been discovered. MMA took about three years (even with frequent injections) to drop down to within range. Osteoporosis of the spine now reduced to osteopenia thankfully - this also took a while and a lot of walking. Something that I could not have done when at my most deficient.
I had five MMA tests that were all raised, although homocysteine level was normal. I do not believe that we are yet at a stage where there is one answer, or even any answer at all for some. This problem starts, as do most, with education. Then no investment in research, no inclusion of patient experience of B12 deficiency, a loss of previous recognition and knowledge within the medical profession- and so a reliance on blood tests when the answer could be staring them in the face.
While there are probably many reasons for fatigue alone, one would have hoped that some of the more distinctive symptoms would by now have made an impact: for instance the "sighs" or repetitive yawning due to air-hunger is unusual enough to turn heads in a supermarket checkout queue, but remains off-list as far as most professionals' understanding goes (even though a long tube journey followed by a long wait in a small airless consultant's waiting-room is as likely to bring it on). So near and yet so far.
This is only one example of an unusual symptom that could by now at the very least be viewed as indicative.
A big fat piecrust tongue that feels as if it is on fire could be another !
It WILL impact on your blood results. GPs are generally untrained and ignorant on the diagnosis and treatment of B12 deficiency. It has now been recognised by NICE that symptoms are just as/more important than blood tests. But GPs generally go on test results alone.....in fairness that's all they're trained to do! I self administered injections for 10 months before I was referred to a neurologist due to severe fatigue and large red blood cells discovered while giving blood. I felt the improvement within a week!!
If you wanted to top up the frequency of B12 injectiobs you can get needles off the Internet and the following company are a reliable source of the ampoules
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