Hi, any guidance or advice would be very much appreciated. I am 39 and until February 2020 when I was diagnosed with an unprovoked pulmonary embolism (PE) I had always been fit and well.
Not long after I started experiencing neurological symptoms. I have had three 'episodes' since March with each one lasting 6-8 weeks with approximately 4 weeks inbetween each of feeling well. The symptoms seem to get worse with each episode and include:
pins and needles, numbness and spasms in limbs
unilateral headache - right side with pain in face and jugular
chest pain
leg, pelvis and back pain - mainly right side
balance problems/foot drop - I have fallen/tripped several times
dropping things - clumsiness
confusion - forgetting things and not finding the right words
frequent urination
intermittent blurred vision - right eye
I am just getting over my 3rd episode, the worst one yet which literally had me rolling round at night in tears with leg and back pain.
All of my bloods I am told have been textbook perfect (except for my D-dimer which was elevated @ 1300+ and was due to the PE) until last week when my B12 came back at 184 and a sickledex blood test came back positive for sickle cell trait, haemoglobin S-36%.
Haematologist says SCT does not 'normally' cause symptoms. Neurologist says he does not believe it is anything sinister as my brain MRI was normal (no lesions) but that he will arrange for a MRI on my spine (cervical) in coming weeks.
I am currently having my loading dose of B12 (6 over 2 weeks) then told I will need 1 every 3 months for life. I am also waiting on the results of a pernicious anaemia blood test.
Has anyone been through similar? Could a B12 deficiency cause all of these symptoms?
Many thanks
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Kizzy_1
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With neurological symptoms you should have loading doses until there is no further improvement in your symptoms, then maintenance doses every two months. Ask your doc to check the BNF.
B12 deficiency may cause all these symptoms. If you have neuro symptoms you should be on B12 shots. My peripheral neuropathy needs shots every other day. 4 years ago my B12 level was 50 pg/ml and i walked with a stick, now i am playing tennis on court. Be patient and good luck.
Yes and was fit and healthy. ..I had of similar symtoms to you
My worst now is my hands and tummy .and i ache like i have rumertoid arthritis I inject myself then 4 weeks later one of Doctor works out every 4 weeks it's a long process to recovery but u will turn a corner
If yes to neuro symptoms then my understanding of UK guidelines is that the loading doses should continue for longer...one injection every other day for as long as symptoms continue to improve, could be for weeks even months.
See next links for details of UK treatment for B12 deficiency.
There are two treatment patterns, one for those without neuro symptoms and one for those with neuro symptoms.
You appear to have been put on the treatment pattern for those without neuro symptoms
Make sure you are on the recommended treatment pattern which GP/specialist can find in BNF book Chapter 9 Section 1.2
Both patterns allow for injections every 2 months after loading is finished.
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to full article for PAS members only. Non members can access a summary.
CCGs and Health Boards in UK will have local guidelines for the diagnosis and treatment of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with national guidelines eg BSH, BNF links.
"All of my bloods I am told have been textbook perfect (except for my D-dimer"
The best advice I ever got was to always get copies of or access to all my blood test results. I was told everything was normal by the doctors and then found abnormal and borderline results when I got copies.
Have you got results for folate?
A Warning
B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments and do some reading about B12 deficiency if you are able to.
Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
Thank you Sleepybunny, those links are really helpful and informative and will prepare me for upcoming appointments. I do have neuro symptoms yes which have been getting worse over the last 6 months. It is the PCA test that I have awaited for 12 days now, do these reults usually take so long? I will definitely join PAS and I will be calling my GP tomorrow 1. To check if my results are back and 2. To request a copy of all my blood results since February! I will also mention the test for Coeliac Disease and inform her of the B12 treatment pattern 'with' neuro symptoms.
I forgot to mention the exhaustion which also appears to be one of the listed symptoms and I was also told by the nurse last week that I have a resting heart rate of 58bpm.
My resting heart rate is 66 - I have a history of high levels of physical training so I do not consider it too low. As the Mayo Clinic say:
"A normal resting heart rate for adults ranges from 60 to 100 beats per minute. Generally, a lower heart rate at rest implies more efficient heart function and better cardiovascular fitness. For example, a well-trained athlete might have a normal resting heart rate closer to 40 beats per minute."
Thank you Bellabab, that makes sense as I too have a history of high level physical training just not in recent months with these ongoing symptoms. What she did say though was that it is something I need to keep an eye on with having sickle cell trait, I will discuss this with my haematologist when my appointment comes around.
I recommend that patients who have concerns about treatment/diagnoses consider putting them into a brief, polite letter to GP.
I'm assuming you are in UK.
My understanding is that in UK, letters to GP are supposed to be filed with medical notes.
I feel that letters are likely to be more effective than info passed on verbally as probably harder to ignore.
Letters create a paper trail and could be useful evidence if there is a need for a formal complaint in the future.
Always keep a copy of any letters written and any replies received.
"have neuro symptoms yes which have been getting worse over the last 6 months"
You could draw GPs attention in any letter or conversation to the potential risk of SACD ( sub acute combined degeneration of the spinal cord) if B12 deficiency is under treated.
Has your GP got a list of all your symptoms especially every neuro symptom?
Symptoms Diary
Are you keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.
A symptoms diary could be useful evidence of any improvement or deterioration in symptoms and could be shown to GP/specialist.
Neuro Symptoms
You mention that you have neuro symptoms.
Have you been referred to
1) a neurologist
2) a haematologist
3) gastro enterologist if gut symptoms present?
NICE CKS link below suggests that in UK, GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
If GP won't refer you to a haematologist then you could ask them to contact a local haematologist by letter for advice. Ask for a copy of any letter sent.
Don't assume that a specialist doctor eg neurologist/haematologist etc will know more about B12 deficiency than your GP although I hope for your sake that they do.
I have been shocked by the lack of understanding among specialists. I saw several neurologists and other specialist doctors and only one thought B12 deficiency was a possibility despite me having multiple typical symptoms.
"2. To request a copy of all my blood results since February"
"I will also mention the test for Coeliac Disease"
NICE guidelines indicate that GPs should order two tests for patients with suspected coeliac disease.
1) TTG IgA which looks for a particular antibody to gluten.
2) Total IgA which checks which patients have IgA deficiency.
Patients with IgA deficiency will need different tests for coeliac disease as their bodies do not make the antibodies to gluten that TTG IgA test looks for.
NICE guidelines on coeliac disease suggest that patients with suspected coeliac disease should be eating plenty of gluten in more than one meal per day for several weeks before blood tested. This is to make sure that there are plenty of antibodies to gluten in the blood.
A patient with coeliac disease may get a negative result in TTG IgA test if
1) they have IgA deficiency.
2) they were not eating enough gluten before blood taken.
If you're tested for coeliac, I suggest checking both tests are done.
There are many possible causes of B12 deficiency besides PA eg coeliac, H Pylori infection, exposure to nitrous oxide, some drugs and medicines, internal parasites eg fish tapeworm, damage to terminal ileum (part of gut where B12 is absorbed), Crohn's disease and others.
I have been under a haematologist since February for the blood clot on my lung but I have not seen him yet about the B12 deficiency or sickle cell trait, my next appointment is January 2021.
I have a neurologist appointment on 1st December and I have kept a diary since May which clearly shows my neuro symptoms have worsened with each 'episode.'
No referral to a gastro enterologist as yet and no thyroid or coeliac disease tests. I am told folate was fine.
My GP is aware of my symptoms yes as I have been to A&E several times with my symptoms over recent months (before my B12d diagnosis) and would be told by Doctors:
All your bloods are fine!
Your pain must be psychological
What exactly is it you would like us to do?
You have likely brought the headaches on yourself with all of the pain killers you have taken (I had not taken any pain killers)
You are a mystery
You should just go ahead and resume your old fitness regime (there is nothing I would have liked more but I had limped into A&E that day with the pain)
I have my 3rd B12 shot tomorrow and will hopefully get my PA results.
I have just downloaded the NHS app from your link, thank you and I will also read through the other links and draft a letter if I do not get the required treatment.
"3rd B12 shot tomorrow and will hopefully get my PA results"
It is still possible to have PA even if PCA and IFA test results are negative.
Your GP may not be aware that it is possible to have Antibody Negative PA.
See link to BSH Cobalamin and Folate Guidelines for more info.
"No referral to a gastro enterologist as yet"
Do you have gut symptoms?
I used to request referrals in brief, polite letters to GP and included evidence that supported the referral request eg symptoms, test results, family history, extracts from UK guidelines.
A gastro enterologist should be able to spot signs of gut damage from PA, Coeliac, H pylori infection and other gut problems.
My GP called today to advise that the PCA request had somehow not been processed and that I need to go and have another blood test taken tomorrow for the PCA. I have not had the IFA nor has it been mentioned.
I have mild gut problems, tummy pain and bloating but nothing severe as yet.
No recent result for Vitamin D but I have my most recent blood results to hand (15/10/20) and it states:
Serum vitamin B12 184ng/L (200-770)
Serum folate 5.1ug/L (3.9-26.8)
FBC - all appear to be in normal ranges 'normal-no action' besides:
Haemoglobin Profile - Abnormal
Sickle Cell Carrier (HbA+HbS)
A2 - N/A
F - 0.9% (0.2-2.0)
S - 36%
C - 0%
D - 0%
I queried why the B12 shots have been prescribed every 3 months rather than every 2 with me having neuro symptoms and was told it should be every 3. I politely advised on the guidance in the BNF book and the potential risk of SACD and was told that she would call me back.
"queried why the B12 shots have been prescribed every 3 months rather than every 2"
Hopefully GP will check the pattern of treatment outlined in BNF book Chapter 9 section 1.2
As far as I understand you are only going to get 6 loading injections.
I suggest pointing out politely to GP that those with B12 deficiency with neuro symptoms should have more than 6 loading injections.
BNF link below outlines that those with neuro symptoms should have a loading jab every other day for as long as symptoms continue to get better. There is no set time limit for the every other day loading jabs. They could continue for weeks even months as long as symptoms continue to improve.
BSH Cobalamin and folate Guidelines mentions the possibility of a review after three weeks of loading injections for those with neuro symptoms.
Have a think about putting queries into a letter eg you could ask about getting the every other day loading injections and then maintenance jabs every 2 months and maybe include relevant quotes from BNF and BSH links.
Some GPs can be irritated by letters but weigh this up against the need to make sure you receive adequate treatment.
There are people on this forum who have SACD, sub acute combined degeneration of the spinal cord, due to delayed or inadequate treatment.
If your GP is unhelpful about recommended pattern of loading doses for those with neuro problems and 2 monthly maintenance jabs , may be worth discussing risk of SACD with them.
Don't let them fob you off with 6 loading doses.
Serum folate 5.1ug/L (3.9-26.8)
Your folate level is not particularly far up the range. Worth discussing with GP if you might benefit from taking a low dose folate supplement.
Sickle Cell and B12 Deficiency
I came across some articles that linked B12 deficiency with sickle cell anaemia but my understanding is that this was people with sickle cell disease not sickle cell trait.
My difficult experiences with the medical profession have led me to be quite cynical.
Nurses time to give injections is expensive although the actual B12 injections are cheap.
I wonder if a reluctance to treat those with neuro symptoms with the recommended pattern of every other day loading jabs and then jabs every 2 months is linked to financial concerns eg cost of nurses time.
Don't let them fob you off with oral B12 tablets.
The pandemic has influenced how some GP surgeries treat B12 deficiency. See link at bottom of my first reply. Be prepared to fight for your B12 injections.
Thank you so much for your help! I am also quite cynical now too, it is exhausting pushing and pushing and explaining over and over to different medical professionals who don't seem to understand. If I do not get a call back today I will draft a letter and I will not settle for the oral B12 tablets.
"It is still possible to have PA even if PCA and IFA test results are negative."
Although it is possible to have PA with a negative for PCA it is unlikely. Around 85% of people with PA do have PC antibodies.
While a positive result for PCA doesn't mean you do have PA (because about 10% of the population have them without having PA) it can be a contributing factor to a diagnosis. When combined with some of - low B12, symptoms of a deficiency, gastroscopy results showing gastric atrophy, high gastrin - it all added up to my diagnosis of PA.
Thank you all so much for your replies, the elimination game and waiting on results is so frustrating. It is reassuring to find a support group who can share similar experiences.
Hi, sorry to hear al this, I was wondering what medication you have been on for your PE’s sadly I had two very serious episodes of PE’s and have been put on warfarin for life now, I honestly believe this medication has contributed to all the health issues I’m suffering now
Hi, I was initially on Apixaban for 3 months and then they switched me to heparin injections for 3 months because of these symtoms. I was told to stop taking them when the genetics blood testing results came back normal. They then diagnosed the SCT last week after me asking for a test as my mother and sister have the trait too. Do you still suffer with symptoms?
yeah I still get symptoms and it’s now over 10 years since my second PE.. we paid privately to get some answers and the consultant explained the damage to chest walls might never go, and this is true, my memory is terrible now and I’m so clumsy, and since all this I’ve now got svt which I take verapamil for, I have pa and have b12 injections quarterly, I started with chronic stomach pains and it’s taken over 2 years for them to diagnose chrohns disease ( none of these things are family related) I honestly believe the medication did start up all these problems, it is a type of poison and it a very nasty drug.. I do hope you get answers really soon because the neurological damage has never got any better x
I am really sorry to hear that, glad you eventually got answers as it is so frustrating not knowing.
This is really interesting as my symtoms are similar. I hope to get my PA results within the next day or so then I will see what further investigations they intend to do. Thanks very much x
You say you have seen a neurologist who ordered MRI. Did they do nerve conduction and electromyography tests? Did they give you any reason for your neuropathy and balance problems?
I paid private for a consultation with a neurologist on 28th August because there was a five month wait. It was a video consultation only so no tests done no. I explained my symptoms and he advised that he doesn't believe it to be anything sinister but that my GP should refer me to see him within a month to review me further and to arrange a MRI of my upper spine. That referral was delayed and so I will not see him now until 1st December but again this is a video consultation!
You should be able to access any letter/report that neurologist sent to GP.
Did the neurologist ask you to do any tests with your eyes closed?
People with B12 deficiency sometimes have problems with their proprioception sense (awareness of where their body is in space) and this can cause balance problems.
Two tests that can help to check proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be carried out by a doctor at medical premises due to the risk of losing balance.
I have the neurologist letter here which states.....'On limited examination there was a full range of eye movements although facial sensation was different on one side. The headache is suggestive of chronic daily headache. I am happy to arrange MRI of cervical spine since she has sensory symptoms. We may not find a cause and I suspect symptoms may settle.'
No tests were done with eyes closed.
My symptoms did in fact settle for a couple of weeks after that but came back worse than ever during my 3rd attack.
Do you find that this happens with PA/B12d symptoms, do they come and go in waves and worsen each time?
Hi, I have had very similar neuro symptoms for last 2 months and was referred to neurologist who doesn’t seem to think b12 is relevant, I have had the loading series as my level was 130. I also self inject weekly but would feel reassured if someone could definitively say my symptoms are purely due to b12. I am also having nerve conduction tests, and am waiting on mri brain and spine results. My episodes came and went over the first month with one ending up in a and e which was grim, frantic action because they thought I was having a stroke, which I wasn’t, then they all lost interest and I was asked whether I wanted to be admitted (?!) I left and wobbled my way home.
It is important to rule out neurological diseases so you should have that mri and nerve conduction and whatever else you can get, I had face to face consultation with nhs, they can’t assess you properly via video and it is possible despite Coronavirus. Try and get your gp on side, I am lucky my gp takes it seriously, she doesn’t have any experience with b12 and neuro but at least she listens.
It is really tough when you are feeling rubbish, navigating your way through the system and it takes soooo long but please push for more testing and maybe consider self injecting while you wait. If it is all b12 you may not get a clear diagnosis from a neurologist unless they understand its relevance, but at least you can eliminate any worries about other neuro diseases.
Yes I agree about GP: very important to have a supportive GP who believes you. A relationship based on mutual trust is way more important than trying to find a GP who has a good understanding of B12 deficiency. I'm not even sure there is one !
If you remain with the same GP, they are highly likely to recognise what is working in terms of treatment: what your returning symptoms are (this is where it helps if some are highly visible) and can then concentrate on how to get you a life back.
The trouble with trying to find an expert is that there is a focus on test results - meaning that GPs will lose the ability to have confidence in diagnosing what they believe they are seeing, and relying completely on test results, many of which have been discredited as being flawed. A frustrating round of consultant appointments thus ensues to rule out all other likely conditions: bowel cancer, IBS, Coeliac disease, Crohn's disease, MS, ME. CFS, depression. Ruling out a raft of diseases and conditions over years will never actually give you a positive conclusive result - which on it's own can be pretty depressing !
I met one consultant (almost by accident on my way to get saliva ducts widened due to strictures) who can still recognise B12 deficiency on sight: a senior ENT consultant who told me, without testing anything, that my GP was right, that every other day injections would work, but I would have to be patient because it would take a very long time.
It is frustrating that some people go months suffering with these symptoms and nobody out of many medical professionals recognise that these symptoms could be due to B12d. In the mean time whilst I await results and for the B12 shots to work I will take reassurance from the fact that the consultants are ruling out lots of other worrying conditions.
You have been through quite a lot, Kizzy, and I'm glad that your GP seems to be on the case. I wish that nightmare of B12 deficiency, for those that have this condition, was more respected by those we have to rely on for treatment. Enough else to worry about currently. I'll be thinking of you - let us know how you get on, okay ?
"that some people go months suffering with these symptoms "
Sadly it's years for some people before they get a diagnosis, over 15 years in my case.
In fact I still don't have a firm diagnosis just an acceptance that my symptoms are suggestive of B12 deficiency and that B12 treatment has vastly improved my symptoms.
Diagnosing Vitamin B12 Deficiency and Pernicious Anaemia
He was an older Indian consultant. If I had to guess I would say that if he trained initially in India as a young man, he would've seen enough B12 deficiency to be able to tell without needing to test for it.
I know my tongue was not a pretty sight !
It was a relief to meet someone with such knowledge and kindness at that point. He complemented my GP on her thorough report, had it to hand, could quote from it - and agreed with me that saliva duct strictures would reduce haptocorrin and so contribute to my deficiency. He also thanked me for keeping a symptoms record and showing him photos. He was patient with me when cognitive problems and memory served me poorly - a real gentleman.
It's only when you've seen enough other consultants that you realise how rare a gem he was. I hope he does manage to fit in some teaching too.
In my experience my GP's' have been understanding but not very knowledgeable and so unable to offer the required support or guidance.
I can relate to this as they thought that I too was having a stroke back in May, a CT scan of the brain ruled this out and I was sent home with the pins and needles & numbness down the right side of my face and body. I believe that the nerve conduction tests and cervical MRI will follow on from my next neuro appointment, if not I will definitely push for them but atm I am told that due to covid a video assesment is all that they can offer. I am curious as to how relevant he believes the B12d is in relation to my symptoms.
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thank you.
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