Hi everyone, great to see such a fantastic community helping each other and I hope you can help me too
At times I have struggled with anxiety, low mood and low energy for years and have always been given anti depressants whenever I have felt like I was struggling to cope or concentrate. I struggle with the cold too, and have been known to have hot water bottles in the cinema and at kids football matches. I managed my anxiety at the gym and it was always noticed the machines couldnt pick up a pulse.
The past few years i get overwhelmed with too much noise and/or too much movement. I have also struggled with itching and dry eyes. Brain fog, lack of clarity and poor memory, fatigue and pale pallor. (was put on HRT, no tests)
More recently I have had tingling in my hands, feet and nose (sometimes they feel like a refresher sweet in a glass of lemonade) and I was losing my hair. At this point I asked for a B12 . I had a FBC and was told the results were 'normal'
Since then I have experienced the following - being somewhere familiar yet fleeting moments of 'where am I' . Struggling to hold conversations at times. Not being able to recall family names, extreme tiredness and struggling with walking up ascents.
I decided to treat myself by increasing my iron (only 20mg a day) and sought B12 injections privately and after 5, I am now ready to tackle the DR.
I have attached blood results for reference as I would like your thoughts. Unfortunately the B12 serum was inflated as I was supplementing at the time of the test.
Other concerns -
Previous blood results - 2018 and 2019 my MCH was 33.5 and MCV was 100 both times.
My total WCC has dropped from 7.8 in 2018 to 6.4 in 2019 and 4.3 this time (range - 4-11)
My Lymphocyte count has dropped from 2.2 to 1.7 and is now 1.2 (range 1.5- 4.5) I have read this can be the result of a longstanding vitamin deficiency
Width is 12.4% which is in range - anything I read, states this isnt consistent for B12 deficiency when you have a high MCH?
Risk factors - Gastritis 3 years ago and gerd which was treated with lansaprozole. Due to slow stomach emtying I didnt eat meat or poultry for months.
High folate can hide B12 Deficiency (mines always been high)
Drs appointment on Friday - I am going to ask for the following -
Bloods to be redone so if I can see if the injections have helped my MCH and MCV (to prove my case)
Intrinsic factor antibody test
Thyroid full panel.
I would really appreciate any shared stories or advice. I am particularly worries my white blood cells are diminishing so if anyone could offer insight in to this (without scaring me) I would appreciate it.
Thanks so much for reading my essay! You are all amazing
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Rockerfella
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I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.
A few links that may be of use
Some may have details that could be upsetting so you may want to have someone supportive to read through them with you. I suggest you take a few days to sift through it so it's not overwhelming.
Link about what to do next if B12 deficiency is suspected or recently diagnosed.
If you have time, might be worth tracking down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and comparing them with BSH/BNF and NICE CKS links.
Read blog post below if you want to know why I urge UK people on the forum to track down their local B12 deficiency guidelines.
"I am particularly worries my white blood cells are diminishing so if anyone could offer insight in to this"
As I said I'm not medically trained.
I have read that B12 deficiency can lead to cytopenia (fewer blood cells than normal). There are different types of cytopenia. Leukopenia is where there are fewer white blood cells than normal.
Have you got results for Vitamin D?
Forum members often report deficiency in Vit D, folate and iron as well as B12.
There are other iron tests your GP can order besides ferritin.
It's common for people on this forum to also have thyroid issues. I suggest you put any thyroid results and an outline of your story and symptoms on Thyroid UK forum on HU.
In UK, GPs often only test TSH which won't give a full picture of thyroid function.
I was given various anti-depressants but they had no effect on me. I suspect this was because the majority of my mental health symptoms were caused by a lack of B12.
Once I started B12 treatment, the mental health symptoms improved rapidly.
NHS treatment
Some UK forum members find that they cannot manage on NHS levels of treatment so as a last resort they turn to treating themselves.
Some try using high dose oral B12 tablets and while these work for some, other forum members report that oral treatment is ineffective (including me).
Some order injectable B12 from German online pharmacies and some turn to getting B12 injections privately.
Hopefully your GP will listen to your concerns.
Good luck
There is more info about B12 deficiency I could post so let me know if you'd like me to post more.
Hi Sleepy bunny, thank you so much for your reply.. im crying grateful tears that you have gone to so much trouble to reply to me with so much information. I am currently at work but will make some time to go through this later and reply to you.
Im so anxious that tomorrow i will be fobbed off but determined to go in armed.
Im so grateful, thank you 🙏
P.s VIT D is 125 which surprised me because i work alot of hours and like to be covered up. Unless my supplements skewed my results.
Fingers crossed that you will not be fobbed off. I can relate to your anxiety on that point because I wasn't listened to. Come back to the forum if your GP is unhelpful.
Please be aware that some info in these links may have details that could be upsetting.
Has your GP got a list of all your symptoms especially all your neuro symptoms?
Referrals
Have you been referred to any specialists?
You mention neurological symptoms including struggling to concentrate/brain fog/tingling so I would expect you to be referred to a neurologist.
I suggest you look through the lists of symptoms I posted and make a list of all the ones you have. Highlight any neurological symptoms and spinal symptoms.
Seeing a specialist is no guarantee of better treatment. Fingers crossed you get a good one if you're referred.
If GP is reluctant to refer you (referrals are expensive for GP practice ) you could ask them to write a letter to local specialist asking for advice on treatment.
I think all the symptoms you have mentioned can be found on lists of B12 deficiency symptoms.
If GP says that it can't possibly be B12 deficiency as your current results are within normal range , consider
1) asking them about the possibility of Functional B12 deficiency
2) pointing out UK guidance indicates people who are symptomatic for B12 deficiency should be treated even if serum (total) b12 is within normal range. See quotes below.
Summary of BSH Cobalamin and Folate guidelines includes the statement
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment "
My understanding of above statement is if serum B12 is normal but patient has the symptoms, they should be treated.
NICE CKS B12 deficiency and Folate deficiency includes the statements
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
"A high mean cell volume ([MCV] greater than 100 femtolitres) is indicative of macrocytosis"
Might be worth asking GP if they can order a blood film as this can show if macrocytosis is present. Might be worth challenging GP (politely) and ask them to explain why your MCV is hovering around 100.
I urge you to try to find the local B12 deficiency guidelines as this is what your GP is likely to refer to. Some local B12 deficiency guidelines differ from BNF/BSH/NICE CKS in advice they give and some are not helpful.
I think people should be careful with their privacy and make sure they do not reveal too much personal information. If you don't mind naming your area of UK, forum members may be able to help you find your local guidelines if you haven't been able to.
If you are unhappy with your appointment, you could follow it up with a letter to your GP that expresses your concerns (maybe copied to practice manager).
Being assertive can lead to GP/patient relationship coming under strain.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books and videos, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Im really fortunate, as i have medical cover at work although very limited. I had a referral to a gastroenterologist who wrote to say i would rather injections as opposed to tablets to treat my mcv. So i now have a referral to a heamotogist booked on the 18th (used a private gp to refer me both times) maybe i should have asked for a neurologist?
I went on PAS yesterday and printed a list of symptoms i just need to fill it in.
Im in shropshire, i had my 5th injection today over 4 weeks and while it helps with clarity for a few days my pins and needles havent eased. No scary episodes of where am i since or feeling like i havent put the handbrake on!
I think the only test i can rely on now is functional tests as i have been taking oral supplements and injections.
Thank you so much for all of these links, i have printed off the PAS information for healthcare providers.
Am i right in thinking CBC will used a machine to count your blood cells where as the smear will look at the size and the shape? Will i have skewed this with my injections?
I plan on asking for the following -
To be treated as per the nice guidelines for neurological symptoms (i did email this last week ahead of my appointment, this maybe another reason im anxious)
A blood smear
Thyroid panel
Iron panel
Repeat bloods to see if my injections and iron have improved and to see if my WBC has declined further.
Does this sound reasonable?
I donr think i have mouth symptoms but will check your link, thank you 🙏
I think it's possible that your B12 injections may affect Full Blood Count results but I think red blood cells (erythrocytes) last for about 100 days so I'm not sure if any changes will show up yet.
I'm not a health professional or scientist but I think when a B12 deficient person starts B12 treatment it may trigger an increase in production of red blood cells in bone marrow.
Does your GP know that you have had private B12 injections?
Were the blood test results you posted from NHS or private?
Sometimes NHS GPs won't accept private blood test results
You mention a period of time when you didn't eat meat. What's your diet like now?
GPs may assume that any B12 deficiency symptoms are dietary so I suggest writing out a typical weekly diet, all food and drink, to discuss with GP. Highlight any B12 rich foods you are eating.
I suggest you consider asking for tests for PA and coeliac disease.
A person with suspected coeliac disease will usually have two blood tests, tTG IgA and Total IgA. Prior to blood tests usually person with suspected coeliac would be asked to eat plenty of gluten in more than one meal per day for several weeks prior to blood tests.
Hi, GP appt didnt go well. She was offended and suggested i could ignore her 20 yrs gp experience and degree.
I asked if the tingling and symptoms werent b12 related ir thyroid as she suggested then what is it.
She thinks im burnt out and has signed me off for 4 weeks.
I asked for intrinsic factor test, she thinks i cant have it without low serum, i pointed out it was important for patients with a high serum and lots if symptoms so shes looking in yo it.
Blood tests posted were NHS
Shes is retesting me so i can see if there has been any improvement on white blood count and ferritin.
She think my thyroid is fine as TSH is fine
Shes going to test bone density for calcium?
Ive asked her not to test b12 as i have had injections. Injections didnt impress her as she says clinics are making money off b12 and its very controversial. I told her i didnt have any option.
Ive always had a great relationship with her before but i cant see it continuing, so i am thinking about finding a different DR.
My heomotolgist appt is in a different county so maybe they will have different guidelines.
Im thinking if taking some time off to see if symptoms improve. My cognition is really worrying me
Maybe get thyroid checked through medichecks so i can rule that out
Just wanted to send good wishes. You are doing all the right things and I'm sure will get to the bottom of this. Unfortunately many doctors know very little about B12 metabolism so we have to learn for ourselves, and you are in the right place for some support. Great idea to check thyroid function properly - Medichecks TSH, FT4, FT3 and two lots of antibodies should give you a good idea, especially if it is central/secondary hypo rather than primary (and GP can't possibly know that from TSH alone). Central can happen with B12 deficiency, I have read (currently being investigated for it myself). Always useful to keep an eye on how the basics are functioning over time, even if tests come back ok at the moment. (Bear in mind that covid or recent vaccination may throw any of your blood test results, so you may need to look at things over time. You obviously already have some old results to compare, so don't get too stressed if things look a bit odd as a one-off) HRT may not be helping and if your folate is so high without supplementing you may not be using it well or may do better with another form. One small step at a time, there are always things that we can do to improve. Cheers
Hi, you guys are all so amazing. Thank you for your advice.
I shall carry on with private injections, pay for an intrinsic factor test although she has ordered one for cealiac which may through some light.
I definitely need to do some more research on thyroid and will definitely look at medichecks. I also want to research the effects of large blood cells (high mch and mcv) and see if this can cause fatigue. I shouldnt be wiped out after a day at work.
Its interesting what you say about folate, i take a b12 complex when im under the weather and then forget, or a multi vitamin same protocol. (Not great) yet folate and vit d are both high.
Maybe by changing the folic acid i will improve? Although i do eat alot of spinach.. i stopped eating meat years ago and replaced it with spinach. On the back of being aneamic once when I used to donate blood.
Thank you for taking the time to reply and support me 🙏
Good idea to do the testing and trial one thing at a time. I would have to disagree with Sallyannl in that your folate may be high for a reason. Mine actually dropped when I started using more B12 and when I started to supplement methylfolate having been taking a small amount of folic acid (at which point it had been top of range). The folate/one-carbon and methionine cycles are complex and you do not yet know if and where you may have issues with them. What kind of folic/folate is in your B complex? Like you I ate plenty of folate containing foods, as well as my standard folic acid in multi, but I still got a vast improvement in symptoms when I started a small amount (not a large one) of methyl(tetrahydro) folate. Doesn't mean that you will, but shows that these things are intricately related and not yet well understood. (Adult Inherited Metabolic Diseases are looking at mine at the moment).
Bear in mind that coeliac testing is great at picking up those with late stage disease but misses many in the earlier stages, so best not to assume that all is definitely ok if test is negative. It may be ok, but it doesn't prove it beyond doubt. And generally there is no mainstream test for other gluten related disorders at all. Best wishes
Hi, you guys amaze me with your knowledge, thank you for sharing. Folic acid is only 400ug a day in the complex but i havent taken much since having injections. One becuase i was concerned about b6 and 2 becuase i was hoping for repaet bloods so decided not to take multi either. I have taken methyl folate a few times over the past 2 weeks though. I will be interested to see what happens to my folic acid.
Do you take the folate daily?
Best wishes back to you, thank you for your kindness.
If it is a folic acid, I would avoid it until you can get a better handle on what is going on. Methylfolate may suit you, or it may not. Unmetabolised folic acid may be affecting lymphocytes along with many other processes mdpi.com/1467-3045/44/4/97/htm. I take about 400 or 500 mcg daily, divided into three doses as that suits me better, but it took a month or so for me to realise that things like balance and vertigo were shifting positively. B6 is a tricky one too as both high and low levels can seem to be causing neuropathy. Even my neuro had to be persistent to get the lab to test it as they refused initially. I only take a small amount of P5P, not pyridoxine, and my level was actualy a bit low. Cheers
Im loosing all faith with drs at the moment when i look at all the meds ive been put on over the years to treat palptitations, migraines. Id have been better with a nutrition course.
Ive also stopped another medication which works on cns and can cause reynauds phenomenon so im back to basics now and although i still tingle at times im beginning to feel a little stronger.
For now i shall take just iron and b12. And methyr folate
I suggest you read through the NICE guidelines for coeliac disease before you have the coeliac tests to check whether she is following the recommended diagnostic process....some GPs don't.
My understanding is that she should advise you to eat plenty of gluten in more than one meal per day for several weeks before the blood is tested. This is to ensure that there are plenty of antibodies to gluten circulating in the blood in patients with coeliac.
When the blood is taken, ask which coeliac tests are being done.
My understanding is that there should be two first line tests
1) tTG IgA which looks for antibodies to gluten
2) Total IgA which checks which patients have IgA deficiency.
Patients with suspected coeliac disease who have IgA deficiency, will need alternative tests for coeliac disease as their bodies cannot make the antibodies to gluten that tTG IgA test looks for. See NICE guidelines Coeliac disease and Coeliac UK website for info about alternative tests for coeliac disease.
A person with coeliac disease may get a negative result in the tTG IgA test if
Sleepybunny has given you plenty of links and advice. There is nothing really to add except to say that all of the problems you have experienced are familiar to me.
It was a surprise to me, when a neurologist ordered an MRI scan of my brain, that it was considered "normal" ! Also a massive relief.
It can be concerning and lonely - much less so if you have help from this forum, people who will answer with support and kindness. Any questions, just ask.
Start reading, one link at a time - that will help you, too.
Have you considered following up the appointment with a short, polite letter expressing concerns. Have a close look at Points 1 and 5 in the letter writing link below.
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
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
Changing GPs is easy but no guarantee of better treatment.
Best bet to find local b12 deficiency guidelines is probably to submit a FOI (Freedom of Information request to your local ICB asking for a link to or copy of local guidelines on treatment and diagnosis of B12 deficiency (including pernicious anaemia).
Hi, thank you again for your reply. (Typed twice 🙈)
I did write an email last week ahead of my appointment asking for injections based on the nice guidelines, again this may be why she was irritated with me. This has been filed.
She emailed me last night with links for symptoms mostly stress related, so i have an opportunity to reply.
I shall request that my mcv is investigated although she argues its only 1 higher than the average I shall request intrinsic factor, thyroid panel, blood smear.
She also argued i seem run down and stressed.. i was upset, ive been winding myself up about my results for a couple of weeks .. especially considering my white blood cells seem to be depleting too. But the symptoms started before got stressed about the results.
I just hope i see some improvement in the blood test results after 5 injections and eating copious amounts of oral supplements because that will speak volumes although unlikely as i only started the inections 5 weeks ago.
If she refuses the tests i will go private. I also have the heamatology appt on the 18th, hopefully he can shed aome insight or make some suggestions.
I agree about changing drs but i have recently moved closer to a small villallge drs and my current dr is joining a hub soon. Shes clearly stressed out herself.
May i ask how you feel after treating yourself? Did you ever get your diagnosis?
To be honest treating myself is the best thing I ever did although I do feel it is a last resort.
If people start to treat themselves without a confirmed diagnosis, it can make it extremely difficult to ever get a diagnosis. I only did it when I had exhausted every chance of getting NHS treatment.
I got to the point of showing dementia and spinal symptoms and had over 50 symptoms that can be found on lists of B12 deficiency symptoms. I consider myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and permanent dementia.
I tried for several years to get treatment from NHS and supplied lots of information, wrote letters, asked for referrals etc but couldn't get any treatment. I had a below range (below 140 ng) B12 result in past and a set of 5 or 6 loading injections then was not given any more. At the time, I trusted my GPs and it was only later that I realised that I had not been treated correctly.
My PA tests and coeliac tests were negative and I could not get my GPs to consider a diagnosis of Antibody Negative PA even though I fitted the criteria. On the way, I collected a load of rubbish diagnoses including psychosomatic symptoms and hypochondria.
I did eventually get some NHS treatment....I was extremely persistent and although polite, I upset one set of GPs. I also experienced some unprofessional behaviour.
I have no confirmed diagnosis more a tacit agreement that my symptoms are similar to B12 deficiency and B12 treatment has improved them and I had a low b12 in the past. I'm concerned at some point I will lose my NHS treatment.
Recording Appointments
You might want to consider asking to record an appointment. GPs will not be keen but if you suffer from brainfog, fatigue, cognitive issues, memory problems...symptoms that may affect your understanding or memory of what's said to you then you have a good case to be allowed to on disability grounds. I suggest asking in a letter to GP practice, well in advance of any appointment and mention symptoms that mean you need a recording.
I believe GPs are likely to be kinder if a witness is present so maybe ask to take someone with you to face to face appointments. Make sure it's someone who is supportive and even better if they know something about B12 deficiency.
Occasionally I talk to close friends about what happened and one recently said that she remembers just how ill I was years ago. I also have a bad reputation for nagging people to get their B12 levels checked....I just don't want anyone to go through what happened to me.
Thank you for sharing your story with me. I did consider taking my partner (although not great with these things) after the appt i had with the gastro.. i sat there in a daze and although i knew what i wanted to say and had all my notes on phone i was blank. I was a bit better with gp but not much.
I too have started nagging my kids and friends about B12, i dont think its a bad thing. The information you shared with me is a huge help and will help me to help others.
I agree its hard to get a diagnosis after treatment, but i too plan to treat myself and my grown up kids are aware.
Im glad you feel better. Your replies are so well written and so well articulated. Im sure you have saved and supported many people with your passion to spread awareness.
I'm so pleased to read that and thank you for spreading the word. My feeling is that things will only get better for UK people with B12 deficiency if more people get diagnosed. I suspect B12 deficiency is massively under diagnosed whether from PA or another cause. If everyone with B12 deficiency got a diagnosis in UK, I suspect sheer weight of numbers would force change.
Are you aware of the petition to get injectable B12 available over the counter in UK?
This would hopefully make it a lot easier for UK forum members to treat themselves.
Please pass the link on to anyone else you think might be interested. It's getting harder for UK forum members to get B12 ampoules from European online pharmacies.
Tracy Witty of B12 Deficiency Info has campaigned on this issue for 8 years.
I've also read that a pepsinogen test may be useful.
More about IFA
Some labs say to leave at least 48 hours and maybe as much as two weeks after a B12 injection before testing IFA. Testing close to a B12 injection may lead to a false positive result in some cases.
Private IFA test
It is possible to get tests for PA privately in UK. Search online for "private intrinsic factor antibody test uk". A high street chain of chemists (not Boots) offer it.
"She think my thyroid is fine as TSH is fine"
I suggest you post thyroid results and maybe mention the GPs comment on Thyroid UK forum on Health Unlocked.
She could order other thyroid tests or refer you to an endocrinologist who could order them.
Hi, thanks for all this again.. yes she was clearly put out, probably because she is the dr that has treated me with anti depressants for years.
I have joined PAS thank you, i took lots of paperwork with me (maybe thats what rattled her)
Hopefully she will reflect on her actions and have a look at the PAS guidelines for healthcare proffessionals.
I have ordered some b12 and will SI until i can work out next steps and get an intrinsic factor test.
Im also considering paying for a full thyroid panel. At least then its peace of mind
Whats interesting is when i said id like to see if the injections have improved my blood cells she agreed, yet shes adament that its nothing to do with B12?
When i pointed out that treatment shouldnt be delayed in the presence of aneamia/neuropathy she told me i dont have anemia . I sure look and feel like it.
My heamoglobin is ok but my MCH is high, do you know if this is because my cells are overcompensating?
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