hi all. I was recently diagnosed with B12 deficiency (level of 67), and am about to have my last of 5 loading doses today. I can’t say I’ve felt too much of an improvement and still have brain fog, dizziness and tingling in my hands and feet amongst other things. Will this improve as the b12 gets to work?
They did test for other things, most have come back normal - normal IF, folate 7.6 (range is above 4), and ferritin is 37 (range 10-300). Few other results are also normal but bobbing along at bottom of range - potassium being one of these. They’ve run CRP which was raised and I need to see the GP about but can’t get an appointment for weeks. I’ve suffered from IBS for many years and they’ve just tested for calprotein, which again came back within normal range so rules out crohn’s with 98% certainty. Normal IF would rule out PA I assume?
I guess I just wanted to know if anyone has had a similar experience? Any other things I can try and push for? I feel I’ve hit a brick wall but something obviously isn’t right. Neuro symptoms continue and the shooting pains in my legs are horrid. I’m still exhausted, I really thought I’d have had a marked improvement by now.
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Sparkleprincess
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I am new to all this B12 but if I experience the level of care you describe I would first introduce your GP to the PAS information and helpline if you haven’t already and failing that either change GP and/or raise a complaint via the ombudsman. Withholding treatment is not acceptable and for us B12 is a treatment, not an optional extra. Best of luck and take action quickly as your B12 is lower than mine and I feel horrible!
If the result was 67 ng/L for serum B12 that is extremely low and I'd be surprised if you're still walking.
Sometimes results are given in pmol/L, even 67 pmol/L for serum B12 is very low.
I'm not medically trained.
I suggest you take at least a week to read through the info I've posted so it's not so overwhelming or get someone supportive to read through it with you.
Some links I post may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
Check you are on the second treatment pattern for those with "neurological involvement"?
a b12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months
There is no set time limit as to how long the every other day loading injections can continue for if neuro symptoms are present. Could be weeks or even months of them.
Vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage including damage to spinal cord.
How often is your GP planning to give you injections after loading injections have finished
Does your GP have a list of all your symptoms, especially every neuro symptom and definitely any that affect spinal area?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
CCGs (Clinical Commissioning Boards) were replaced by ICBs in July 2022.
If you can't find the guidelines online, try submitting a FOI (Freedom of Information) request to ICB or Health Board website, asking which B12 deficiency guidelines are being used locally and for a link to or copy of the guidelines.
Read blog post below if you want to know why I urge UK forum members to do this.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF info in this book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Misconceptions
Some forum members have met GPs and other health professionals who have wrong ideas about B12 deficiency. I think it's useful to know some of the common wrong ideas.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
thanks so much for this it’s really helpful - will have a read through now! It’s 67ng/l (range 180-1000). To be fair, he did keep telling me that it was incredibly low when he called me, but does explain why I feel so horrendously bad and at least there’s an answer. At 36 I feel like a 90 year old - how am I still standing I actually don’t know. I honestly thought I had thyroid issues but that’s come back ok too. I just feel a bit like I have no idea what’s going on.
Definitely on pathway one - 5 loading doses and maintenance every three months. Will speak to the nurse today when I get my shot and see what she says.
Annoyingly our practice is currently putting in a new system and you can’t book an appointment until 14th, when they’ll have a backlog and it was a 3 week wait before this!
With a level that low, I'm concerned for you about possible risks of developing permanent neurological damage.
There is a window of opportunity in B12 deficiency for treatment before any damage becomes permanent.
There are forum members here who developed SACD, sub acute combined degeneration of the spinal cord from delayed or inadequate treatment.
I suggest putting any concerns in a short, polite letter to GP and practice manager as harder to ignore. Maybe a helpful friend/family member can hand it in to Reception to ensure it gets there.
See Point 1 in this letter writing link which I think is relevant to your situation.
When I read your story, I did wonder if you were in Gloucestershire which has a poor reputation on this forum for management of B12 deficiency.
I think you need to make a fuss... weeks or months with inadequate treatment could be risky.
More about letters
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.
If you're feeling rough after loading injections, has the GP checked your potassium levels? Some people get a drop in potassium levels when treatment starts.
Contact with a specialist is no guarantee of better treatment so be well prepared for any appointment...I had some bad experiences with specialists who didn't understand B12 deficiency.
I used to put a request for referral in a short, polite letter to GP along with evidence that supported request eg symptoms list, quotes from UK health documents.
If GP refuses to refer, you could ask them to write a letter to local haematologist/neurologist asking for advice on how to treat you.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more 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.
Thyroid issues: we have a few forum members who have thyroid issues and B12 deficiency. People who have autoimmune conditions tend to have more than one - so pernicious anaemia and autoimmune thyroid conditions such as Grave's or Hashimoto's disease a fairly common combination. Similarly, vitiligo or psoriasis can accompany PA.
Whether you have PA or there is another cause for severe B12 deficiency is difficult to determine. It won't feel any different from the patient's point of view !
I think it is still true to say that PA is the most common cause, but not everyone with PA will have a positive intrinsic factor antibody test result. The odds are about 40-60% -the toss of a coin. Additional problem - few doctors seem aware of that, so can make erroneous diagnostic decisions based on the one result.
Martyn Hooper, who is the founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result. A very good job that he (and/or his GP) persisted.
Nerve damage, as he would be the first to tell you, can get worse and left un-/under- treated, may become irreversible. So, as Sleepybunny has pointed out, ensure that your treatment regime follows the pathway for those with neurological symptoms.
If you feel unable at present to read through all the research and information links, I'd start just with the NICE guidelines - so that you can question your GP using the current medical professional advice on treatment.
I wondered if you had someone supportive who could go with you to face to face appointments. Even better if they have read about B12 deficiency and understand what you're going through.
Sometimes when patients challenge their GPs it can put a strain upon GP/patient relationship but weigh up risks of upsetting GPs against the consequences of not getting adequate treatment.
Recording appointments
Have you considered asking to record appointments? It's my impression that GPs/specialists are likely to be kinder if a witness is present or being recorded.
They are unlikely to be keen but if you have symptoms that make it hard to understand or follow what they are saying eg brain fog, fatigue,memory and cognitive issues etc then you should have a good case to record on disability grounds.
I would suggest that any request to record an appointment is made in writing to doctor well in advance of an appointment and include the reasons why you need to record. Keep it brief.
Always keep copies of letters etc in case needed in the future.
If your GPs stick to their treatment pattern of 5 loading injections then injections every 3 months, I suggest you challenge this.
Maybe discuss SACD, sub acute combined degeneration of the spinal cord with them and point out politely that the risk of developing this is increased if treatment is inadequate. You could also mention that your current treatment pattern is for people without neuro symptoms ( have a list of your own neuro symptoms).
I am not saying you have SACD, sub acute combined degeneration of the spinal cord. I'm n ot a health professional.
I am saying that your GPs and any specialists you see should be aware that SACD is a potential consequence of B12 deficiency and discussing it in letters/conversations may make your doctors sit up and take more notice of you.
If SACD is found, it needs to be treated quickly and aggressively.
Have you got results for full blood count tests (FBC)?
There can be useful clues on that.
B12 deficiency ( and folate deficiency) can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
A person with B12 deficiency (and/or folate defic) with iron deficiency may appear to have normal sized red blood cells on FBC tests as effects of the iron deficiency can mask effects of B12 deficiency ( and/or folate defic).
Things get can get complicated in someone with all three eg B12, folate and iron deficiencies.
Your folate result is not very far up the range. Have you asked GP if you would benefit from taking a folate supplement? Local pharmacist may also be worth talking to.
When B12 treatment starts, it's my understanding that there can be an increase in production of new red blood cells and this needs other nutrients as well as B12. folate and iron are two I can think of.
A bit about CRP
I think raised CRP can suggest inflammation in the body.
Have you ever been referred to a gastro enterologist?
There is a type of gastritis that's associated with PA,
Your ferritin level is quite low in range which can cause symptoms.
Also I did quickly read through your post thread; do you have a thyroid condition? Any results for thyroid (TSH, FT4 or FT3) also any vitamin D results?
I've found both this PA forum and the thyroid forum to be really helpful and supportive. If you've not already done so I would also post on the thyroid forum on Healthunlocked and they can offer suggestions to you in addition to the replies here.
I'm not saying you have thyroid issues but it would be good to rule them out if possible.
To feel like you do in your 30's is not right but you have come to the right place to get support.
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