Hi guys , I’m not getting anywhere with GP and wanting to go privet, I’m wondering who to see a neurologist or haematologist? My bloods in January for B12 were 378ng/l (187-883), folate 3.6 ug/l (3.1-20), TSH 0.93 miu/l (0.35-4.94).
I have all the symptoms of b12 deficiency - paresthesia bilateral lower legs , and just the last few weeks progressing into my hands. Low mood fatigue. Struggling to walk now my legs feel so tight like my Achilles could snap if I tried to run. I used to run marathons! Also noticed vertical ridges in my nails now. Can’t go on like this I’m Only 38 years old, 3 kids , trying to work . I am usually fit and healthy. Taking 5000mg daily b12 lozenges and eating 100g of liver for lunch everyday! Also eating all good gut things lentil chickpeas kefir kombucha etc.
who best to see to get this sorted ? Is there a specialist somewhere in the uk I can see??!
Thank you so much in advanced xxx
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Cookiedough2022
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I saw many specialists and only one, a neurologist, thought B12 deficiency was a possibility although he didn't confirm a diagnosis due to my normal range blood results.
I saw several other neurologists who didn't have a clue despite my typical symptoms.
I saw other specialists privately, spending hundreds of pounds and felt I had wasted my money.
If possible before you spend your money to see a particular specialist privately, try to find out if they have any knowledge of B12 deficiency eg have they published online articles. Check their websites to see if there is a note of their special interests and maybe contact their personal assistant and ask.
NHS doctors will not necessarily accept what is said by a private doctor but a private appointment that finds something significant may be enough to nudge the NHS into at least repeating the tests or referring you on the NHS.
We are not allowed to name doctors on this forum but as far as I know there is nothing to stop people sending you a PM (Private Message) with suggestions.
What has your GP said when you've asked for referrals to NHS specialists?
If they won't refer you (referrals cost GP practice money) then you could ask GP to write to a local haematologist asking for advice on how to treat you.
If you have gut issues, have you been referred to a gastro enterologist?
There are people whose diagnosis has come via a gastro specialist.
There may be some useful quotes in documents below that you could include in a letter to GP. I used to put referral requests into a brief , polite letter to GP along with evidence that supported request eg symptoms list, quotes from UK documents, medical history
You may also find it useful to track down any local guidelines for your area of UK on B12 deficiency and also local guidelines on referrals to neurologists/haematologists/gastro enterologists.
If you can't find local B12 deficiency guidelines, your best bet is probably to submit a FOI (Freedom of Information) request to your CCG (Clinical Commissioning Board) or Health Board asking for a copy.
It's also possible to submit a FOI request to GP surgery although they may not have the info you want.
If you're persistent, there's a good chance you'll get some referrals on NHS although your GP may not like your persistence.
"eating 100g of liver for lunch"
Might be worth seeking some dietary advice if you're trying to maximise dietary intake of B12. Liver has high levels of vitamin A which may be an issue for some.
Have you talked to PAS?
PAS membership is separate to membership of this forum.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
I suggest comparing the info in BNF/BSH and NICE CKS links with the info in local B12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to get hold of the local guidelines.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF UK treatment info is out of date in above book. 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.
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.
Like you, my serum B12 results were well within range eg 300 - 500 ng/L despite severe symptoms of B12 deficiency.
I had had one below range serum b12 result in past for which I got one set of 5 or 6 loading injections then no other treatment despite the fact that I challenged it, wrote letters etc.
I had some difficult experiences with the medical profession and when I had exhausted all chance of getting NHS treatment, I chose to self inject. I never wanted to but I had already developed spinal symptoms and dementia symptoms.
There are threads about self injection on this forum but I see it as a last resort.
From my experience. I’m a runner and cyclist 4 kids, senior job, like to keep fit but since PA diagnosed with 57 ng/l (range 180-1000) is all in the air. I got Achilles bursitis and secondary tendinitis and really in pain with very tight calf’s. I thought it was an injury but now believe it a symptom of PA. So that area needs physio.
I was advised and researched the best route to go - FOR ME note everyone is different.
1) private gastroenterologist with experience of all matters. Had an endoscopy to rule / confirm things.
2). Private Neurologist to check why I’m aching and have electric shocks in left arm and aching in upper limbs.
3). My plan is finally to see a private haematologist after a collection of results from 1 and 2) and bloods.
Issue is without private experts it’s difficult to get comprehensive understanding of your personalised issues and create a health patient plan.
I’m personally on 3 month jabs following 6x loading , daily 1000ug b12 tablets. Daily 6000ug solution in 2 litre of water per day.
It’s like a rollercoaster and every day is a new experience for me.
I’ve been reasonably lucky with GPs but had to push using the evidence from private gastroenterologist as GPs are limited in all forms of diagnostic and advice. If you clearly evidence and put your case forward to the GP stating you are at risk of developing cardiac or neurological complications and if these were to develop and it could be shown that the primary care guidelines have not been followed then the medico-legal consequences could be severe.
Thankyou so much. I’m not aware of any stomach problems and I’ve never had any problems eating any particular foods. The GP had agreed to send me for intrinsic factor test , MMA, iron , folate and repeat b12 blood tests. So I’m hoping that will show something. But a gastroenterologist might also be the way forward if PA is confirmed. I really hope the bloods show something. We had such a lot of stress last year and I’m wondering whether this could be what started it off. Since I had my last little boy 5 years ago I’ve had periods of feeling vertigo/ dizzy/ unsteady on my feet so I’m not sure where it started , possibly pregnancy..?
Gas and air mix contains nitrous oxide and nitrous oxide turns B12 into a form that the body cannot use.
I think the potential issue with nitrous oxide in gas and air mix might be even worse for those people whose B12 levels were low to begin with.
I'm guessing that after exposure to nitrous oxide, it would take some time for the body to get rid of the inactivated B12 and to build up levels of useable B12 again.
As far as I know, pregnant patients are not routinely told that gas and air mix may cause issues with B12.
NHS page on pain relief in labour says that gas and air mix has no harmful effects for mother and baby. There is no mention that nitrous oxide inactivates B12.
This is absolutely fascinating, I never knew this about gas and air - yes I was in proper labour for a good 12 hours using gas and air! I’m definitely going to look at this information tonight- thank you so much ☺️ x
I suffered post natal depression and developed migraine symptoms a few days after a long labour with prolonged exposure to gas and air, I suspect that I was probably already at lower end of range for B12, I had some mild symptoms prior to birth which I put down to being pregnant and one day I may access my birth/maternity records to see if I can find out.
No midwife ever told me that gas and air mix could inactivate B12 in my body.
There have been midwives posting on this forum who suspected their B12 deficiency type symptoms were caused by regular exposure to nitrous oxide.
If you want to know more, search online for "midwives B12 deficiency uk" but be aware that some links may have upsetting details.
Hi, at this point, all I am going to suggest is that you go to an Urgent Care Centre, americanization, who do better blood tests than GPs. The woman who informed me, went with a book, as it took her 6 hrs to be seen.
I don't want to be too hard hitting in what I say, but you would be wasting your money to arrange for any private investigations.
B12 deficiency is woefully misunderstood, ignored and denied in the UK medical practices. As many of us have done here, you will feel belittled, humiliated and made to feel like you're insane unless you have a confirmed B12 blood test with a clear deficiency and a referral to a specialist from your GP.
You did mention this "The GP had agreed to send me for intrinsic factor test , MMA, iron , folate and repeat b12 blood tests. So I’m hoping that will show something. "
And that's great progress. At least this way you're getting investigations into whether you have PA or not.
But if you are self treating by taking B12 lozenges every day, and you've already had a B12 blood test that showed roughly 400, I'm afraid it may be too late to get the help you need.
I only say this now to save you the money, heartache, stress, and toll on your life that undiagnosed B12 deficiency has. I won't share the impact it's had on my life but it has been no less than devastating.
Take your guidance from your GP. But if you're self administering B12 via lozenges, it's likely this will affect your B12 blood levels. And you'll have to stop taking them and wait for 6 months before they get back to 'normal' i.e. your blood test represents your blood stores for what they are.
B12 serum blood tests measure active and inactive B12, which means you may have alot of B12 in your blood from the lozenges that isn't actually getting into the cells. And that's usually why injections are prescribed - because they're more effective at getting into the cells. You need sky high b12 levels for this to work.
The only other private option for treatment is to go to a cosmetic salon for private injections. Beyond that, you may have to consider self injection so you get the treatment you need.
Sorry to be so hard. But it's a brutal reality of a condition that is no understood by medics unless you show up on the blood test. You clearly have a good GP who is doing further tests, so wait to see what they say. And if it's a dead end, self-medicating with injections sourced from Germany may be the only way.
Just to also add, Cookiedough2022, that it could go two ways here, after your next blood test.
1. Bloods show high levels of B12
The lozenges may be being absorbed into your blood stream but not into your cells. If your test is in the 1,000's then this is very likely. However, the GP will say 'you're normal, B12 is not your issue' and may leave things there. Depends on your GP!
2. Bloods show B12 deficiency
If your bloods show a deficiency, it's very likely you do have PA since alot of PA sufferers cannot absorb sublingual liquid or lozenges into their blood, let alone their cells.
Option 2 is a good outcome in terms of getting the treatment you need. And that would be a course of 6 injections over 2 weeks, followed by every other day if you have neurological complaints. Which it sounds like you do.
If it's Option 1, come back on the forum and let us know. And the best course of action could be to get some injections from salons to see how they do it, before you invest in self-injection every other day. Don't worry - you'll become a confident pro in no time.
Just sharing my own experience which is similar to yours, and don't want you to lose the money and face the stresses I did without a firm blood test and diagnosis.
Hi again guys, so I’ve started a loading dose over the x6 b12 injections next 2 weeks which is great but the gp says she can’t give any more after this until we have some confirmation from bloods or the green light from haematology/ neurologist. I said I’m happy to go privet. I just don’t want toGo backwards after having those 6 and I know it’s going to take more than that - GP also thought it would too although she said her hands are tied prescription wise even though I wrote a long email will the NICE guideline and other research papers says treat the patient symptoms rather than bloods! Could anyone privet message me any recommendations- I’m in Cornwall but I’m happy to travel! I just feel 6 injections won’t be enough and I want to get to the bottom of the cause of all this as I’m only 38! Thankyou so much xx
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