Can anyone advise me what kind of specialist is needed in the UK to diagnose Functional B12 deficiency? My GP practice doesn’t seem to know.
After a frustrating few months waiting weeks for phone appointments, we are still no further on with being able to access B12 injections under medical supervision with the NHS. The GP I spoke to today was sympathetic but isn’t allowed to prescribe unless there’s a deficiency in bloods or a consultant instructs. The practice tried writing to endocrinology at the hospital but made a bit of a mess of it and didn’t get much helpful response as a result. They’re now trying neurology at a different hospital. All of this takes months of back and forth. In the interim, I booked a course of weekly B12 injections at a local clinic and my husband has seen an improvement in symptoms, with a subsequent lapse over Christmas when the clinic was closed. Potentially his symptoms are severe enough to need injections every other day so I want to push for this on the NHS under medical supervision. I’d just like to be armed with which specialist we need to see in case neurology don’t feel they can diagnose either. Nobody I’ve spoken to seems to know who should be advising on it!
Thanks
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As you have discovered the NHSis very bad when it comes to dealing with B12D. Most GP's don't seem to realise how dangerous it can be and know next to nothing about it . And the same applies to consultants. IMO finding one with a comprehensive knowledge of B12D is like trying to find a needle in a haystack. And the chances of getting B12 injections eod (after loading doses) on the NHS is practically zero.
Quite frankly I feel the stress of trying to get the correct treatment from the NHS just isn't worth it. IMO you would be better off treating your husband yourself.
Thanks. I absolutely hear you. He’s got autoimmune conditions and is therefore seeing a private endocrinologist (due back in Feb) and still under a specialist neurological unit’s care - although they take forever as it’s NHS, as hex was referred with suspected Hashimoto’s encephalopathy. He’s got dreadful memory issues so they should be taking this very seriously. They’ve ruled out a host of conditions to date but not examined the possibility of Functional B12 Deficiency yet and HE is an exclusion diagnosis. I totally expect we’ll end up down the self-injection route but given how very badly his life has been affected, I’ve got to fight for a diagnosis and an understanding of how it affects his other conditions. We already pay for an endocrinologist and medication. We did originally access the neurologist privately but it was so complex, he immediately referred us to an NHS hospital. I’ve asked a consultant friend who to see for a B12 diagnosis and nobody seems to have a clue. Isn’t it crazy?!?
The NHS reminds me of the poem by Henry Wadsworth Longfellow.
'' When she was good, she was very good indeed. But when she was bad she was horrid.''
I'm amazed at how many bodily functions go wrong without B12. Researchers are constantly finding new links to so many illnesses. And low B12 levels exacerbate inflammation so high B12 levels will help with your husbands Hashimoto’s.
The good thing is the fact your husband started getting better with B12. You are doing the right thing.
I have no words for the state of the NHS at the moment. I’ve worked in parallel with them for years in another public service and the decline has been horrendous to see.
Pretty sure this is tied in with his thyroid function and both need to be properly balanced for everything else to work. Both B12 and thyroid hormone levels affect so many systems, as you say.
We’re plugging away with the weekly injections for now while we get a response from neurology. Just relieved there’s been some improvement finally. Still a long way to go, but a bit of progress 😊
Management section in UK document "NICE CKS Anaemia - B12 and Folate deficiency" discusses referrals to specialists.
There are people on this forum with diagnosed Functional deficiency so might be worth searching forum posts for "Functional B12 deficiency".
I think Cherylclaire has Functional B12 deficiency.
I saw neurologists, an endocrinologist, a rheumatologist and only one of the neurologists thought B12 deficiency was a possibility despite my 50 plus typical symptoms, still didn't get a diagnosis due to normal range serum B12.
Thanks - no, he hasn’t seen a haematologist. The last GP said he’d only ever come across one query of the condition and didn’t know the outcome. He tried endocrinology first as they might have been able to access MMA testing.
I’ll book him in with a haematologist privately if we need to. Both yesterday’s GP and I are now referring back in to neurology - he’s an open case as they’re still waiting for the results of his memory assessment to be passed back to them.
They were dismissive last time I queried it but that was before the memory assessment and liothyronine trial. They may be more receptive now there’s been some progress following the injections. Still expecting a bit of a battle though.
Might be worth putting queries in a letter. Can be useful to have a paper trail. Keep copies in case there is a need for a formal complaint at some point.
Yes - I do have a functional B12 deficiency diagnosis !
This was, unusually, a primary care diagnosis from my excellent GP.
Having noticed that I was unresponsive to the loading B12 injections given for my apparently mild B12 deficiency (196 ng/L with a range starting at 197 ng/L), then deteriorating on a three-monthly maintenance dose, she requested an MMA test.
The MMA test was difficult to get for a GP: she tried three times before she was successful. Many local hospitals do not provide this test at all. This is likely to be nigh on impossible now for a GP to request - despite the new NICE guidelines suggesting this test as a secondary back-up for those with suspected B12 deficiency symptoms yet borderline serum B12 test results.
Still I think worth trying to persuade a GP to request MMA test from major hospitals in your area.
Once I got this diagnosis, confirmed by the testing hospital, EOD injections were requested to start immediately - because my GP had already had renal problems ruled out by blood test as the cause for raised MMA.
How did she know what to do ? She had had one B12 deficient patient, 10 years previously, who was similarly unresponsive to treatment, and had discovered the cause and made a mental note of the required test and eliminations. Later, SIBO was ruled out too as a potential cause of raised MMA. My MMA continued to be raised for three years despite frequent injections. It was tested 4 times by haematology, all results raised, and finally on the 6th test MMA had dropped into mid-range. This was carried out, with DNA tests, by Adult Inherited Metabolic Diseases.
No genetic cause was found for me from DNA search.
I now self inject. Over seven years from diagnosis, I still cannot manage my symptoms or function well with less than one Pascoe (1500 pg/L) B12 injection every fourth day - any less means a swift return of symptoms (perhaps most noticeably memory and cognitive ability) which takes a while to correct. I no longer try to reduce my frequency.
Occasionally, I need more. I am getting better at knowing when !
My GP left the practice - so I no longer get the regular monitoring or blood tests for folate, ferritin, vitamin D or thyroid - all of which were also problematic for a few years.
Thank you. I think my biggest concern was how we’d know when to reduce them down. However I can see now he needs more than one per week so I’m less concerned the longer he has them as I feel more sure of the effects. He can tell himself now too which is great
Once I started injections, it took me a couple of years to get folate and ferritin to stop dropping once reaching optimum level and stopping supplements. Now no longer sure what my levels are.
My osteoporosis of the spine eventually reduced with daily Raloxifene and vitamin D on prescription - and is now (as far as I know this still holds) down as osteopenia. Never knew that could happen.
In spite of the frequent injections, it took me three years for my MMA to drop from constantly raised into mid-range. I'm normal !
After self-injecting EOD for over 2 years, I decided to reduce it to every third day - so really back to the 2 a week given by the NHS on getting a functional B12 deficiency diagnosis. This was continued for 6 months, then moved onto a maintenance frequency of 1 injection a month. This last did not work for me at all - so really hold out until you are both sure that your husband has reached a level of improvement that he wants to maintain permanently and that the maintenance regime given is adequate to do that job..
You may find that he will need to self inject eventually in order to get symptoms under control as much as possible. There is no point at all in suffering cyclical deterioration before getting the next injection - it won't lead to any health improvements.
I do understand that you would both like to get the correct treatment with the support of the NHS, but sometimes it just is not possible long-term.
Having to keep proving that a particular regime does not work for each individual can be risky. Nerve damage in particular can be difficult to mend. Neurological symptoms need time, and EOD injections until healing is complete (not until the nurses get sick of you taking up their time). All medical guidelines for the UK state this and are readily available for GPs to consult.
I wish you both luck - we are, after all, all different, whether we are treated that way or not.
Hi, so sorry to hear you’re having such difficulties. I was diagnosed with Functional B12 def. To cut a long story short! had been under ME diagnosis for nearly 20 years, recurrent infections, deficiciences iron, vit d, etc and raised Tsh,etc.
My serum b12 was 240, deemed ok by NHSbut was very poorly with neurological symptoms, numbness one side, pins & needles, exhaustion, confusion, vision issues, migraines,etc so after much battling convinced Dr for a referral postal MMA test at St Thomas NHS, Viapath which I paid £30for. That showed very low active b12 & MMA 700+, so confirmed as a functional defic.
This test isn’t available as such now, but I was told they are working on making this available again soon,without the need for a Drs referral, but meantime our nhs Drs should be able to order it via Doctors Labatory, which I presume is at St Thomas, and they will do it?
It goes to show the NHS serum range for b12 was not accurate in my case, in relation to MMA testing. I was advised to have alternate days inj until all neurological symptoms gone, but Dr would only allow loading dose of 6, but then monthly inj. It took 3 yrs to lose the pins & needles, etc and the injections seemed to last for abt 2 wks, then wear off.
I changed to sublinguals during covid, they’ve kept my active b12 levels ok, but serum levels dropping from 6000+ to 1000 last time, but I was advised that a Functional deficiency may not be a lifetime diagnosis! Like Claire, my gp has left, so it’s a case of starting over, but the old symptoms and exhaustion are now kicking back in so am hoping injections can be reinstated!
Yes, lots of links between other deficiencies. My very low iron stores naturally climbed after b12 levels improved, whereas supplemental iron hadn’t helped much in past. It seemed easier to keep vitamin d levels up? Thyroid levels improved, though I did introduce gluten free diet at similar time, but although I feel better on gluten free I have tried gluten at intervals and it doesn’t seem to drive thyroid levels high,so again, as you say, these things all work alongside each other. My chronic sinusitis was much much better. Guess once everything is working better, general health and ability to fight infections is improved. I was lucky enough to talk to the amazing late Dr Chandry and have found his book to be brilliant and a great one to offer to your Dr if they’re looking for further knowledge.
I’ve had Mma tests via Medichecks (urine) and an organic profile, but they are expensive. Bear in mind too, that MMA can be in normal range, but one still may have b12 deficiency & benefit from injections! There’s so much to be learnt about b12 yet it seems, homocysteine is another test that can help diagnose it, but yet again, not easy to obtain on NHS! I did a home test via Yorktest but not sure if that’s available now.
It’s so frustrating that help is so sporadic, something as simple and cheap as injections can’t be offered but in my experience various other medications to try to alleviate symptoms have been offered instead, such as antidepressants, migraine tablets, etc! various Drs have said to me they have very little knowledge of B12 & default to just testing and not listening to symptoms. Really hope you soon get the help and support you deserve!
Jo - It was at St Thomas' Hospital that my GP finally got my MMA test request accepted.
Also that was where I later had 4 MMA tests carried out, by haematologists, alongside many other blood tests. They were the ones who sent me to a neurologist and later Adult Inherited Metabolic Diseases for DNA testing.
Yes, I also had antidepressants offered to me initially - (about 4 times !) - but refused, knowing that the dizzying volume of altered mood-swings had a physical foundation and was related to B12 deficiency. Luckily, my GP believed me eventually - and from then, it was just a matter of continuing eliminations via secondary care.
As fast as alternatives were eliminated (which is "not very"), more were suggested, however. It takes years. Years in which I was not prepared to deteriorate again - so, as much as I was willing to go to any and every consultant appointment, I was also not going to reduce down from being on my knees with 1 maintenance injection a month to the locum haematologist's suggested "certainly no more than 1 injection every 2 months" ! After all, I had a full-time job to save !
I started self injecting at this point, telling my GP the day after I did the first. Yes, every other day injections helped me back to work - but only on a phased return starting with one day a week, later increased to two. I never got past that, and eventually accepted voluntary redundancy during lockdown. In the end, something of a relief, I have to admit.
ALL of the tests, checks, monitoring, scans, GP and consultant appointments were via the NHS. The only private test I ever had was a single postal blood test for thyroid - the only way to ensure the autoimmune checks are included. This was because I have two sisters with Grave's disease (among other conditions). A relief to know I did not have that too.
I have never refused or even altered an appointment. I did refuse the antidepressants, and have also refused statins once when ventricular ectopics were found on a 24-hr heart monitor for arrhythmia. I have recently started statins anyway, as calcification of coronary arteries was later found on a routine lung healthcheck scan.
I also have had sinus problems - these are seen as being related to recurring gum infections including an abscess that has been there, off and on, for over three years. I am awaiting a biopsy and a procedure in which they will cut through my gum to access the infected area in which I may lose a few teeth: it has been a long wait. Good - that could have really ruined my Christmas !
Thank you! I was going to pay £200 for the MMA test and then someone told me it’s not definitive and the best way to know is to see if the injections work. And I could get 7 clinic injections for that price…so we did that. I could see by number 4 there was a real impact.
If I don’t get anywhere with them soon, I will source self-injection and then go back to them with any continued improvements to try to get diagnosis confirmed. They’ve carried out a truckload of tests on him so far to no avail around his memory loss and have drawn complete blanks - it seems crazy given the cost of that that they won’t do a few far more simple things and a perfectly harmless trial of injections 🤷♀️ I can tell the GP feels frustrated too
Yes crazy.If the Gp I'd frustrated why don't they give your husband a trial of b12 injections ?
They can prescribe them on clinical symptoms / nothing else found basis .
I bought my own b12 in lockdown ? March 2020 .
As fearful of the b12 injections not continuing at the surgery.
Ironically after deciding to do this with help on here, my chosen Gp actually rang saying despite alot of opposition from. Peers is going to prescribe B12 fof me to inject at home to reduce precious nurse time . These were to be Sc which i had to take responsibility for.
Nurses as Subcutaneous B12 in jections ard jot licensed in the UK would not show me what to do.
Also would not teach IM.
So I've done sc at home ever since with prescription B12 and bought B12.
It appears in the clinical commissioning area, he isn’t allowed to prescribe unless there a serum deficiency or instructed by a consultant. We had this over levothyroxine too a year ago, which was why DH got to emergency level before he was prescribed. And even the consultant can’t prescribe liothyronine here with demonstrable clinical need. No access to MMA testing either. We really are the postcode lottery losers.
I can live with having to sort the self-injections because I’ve been expecting that really. I just want the diagnosis ultimately because he’s been misdiagnosed before and I want him to have that recognition.
It so wrong though, that people have to go through this and fight like this. It exhausts me and I’m healthy! It’s just not right that sick people are treated like this and have to battle for reasonable treatment
West Cheshire/Wirral. I’ve seen the new guidelines 👍 thanks. We don’t even get to see a GP. Everything is on the phone. Honestly, it’s horrific. I’m appalled by how primary care here has deteriorated. My husband can’t process what he’s told on the phone when he’s in a flare-up so it’s doubly bad.
Hoping we get some sense from the neurologist or endocrinologist to refer this to someone who can diagnose but I doubt that will be soon.
He’s got high normal levels in blood and the GP expected to see anaemia etc if he was having difficulty utilising B12 so I would send the new guidelines but I’ll never speak to that GP again - they’re all locums. I’ll give them to the consultant instead.
His is complicated by being misdiagnosed initially and then having autoimmune thyroiditis and severe gluten sensitivity as well. There’s a lot of crossover on some of the symptoms but probably because there is interlinking between B12 issues and thyroid function.
I’d really like to understand some of the research behind what could be going on here with the functional transport issues but a lot of the articles seem to be locked behind medical pay walls. Perhaps PAS might have some information.
Check out your nearest Nuffield Hospital and search for Pathology Direct Services My MMA was around £75 including the blood draw. You don't need to pay a referral fee if you have a private blood test suggesting that MMA would be helpful
My husband injects my B12 for me. It may be easier for you to learn how to give the injections than to keep fighting the medical system. Then you can do it as often as needed to keep the symptoms away.
I think I’m going to have to do that sooner rather than later. He’s off on holiday for 2 weeks in the sun this month then can’t get a shot as soon as he gets back as the clinic is closed for holiday. He relapsed quite a bit over Christmas so three weeks will not be good at all.
He probably should be on alternate day. He’s definitely been better in the occasions he’s had 2 in a week.
One reason we didn’t go for the self injection option after Christmas was this holiday and concern over taking needles etc abroad with no GP prescription. I’m not sure how we’d manage that for future holidays?
I’ve obviously got a ton of research to do around how to do this and where to source it from. I’m also wondering if his endocrinologist will be able to issue a private prescription like we have for his liothyronine. Or if the pharmacy we get his LDN from can prescribe.
He’s picked up again tonight after this morning’s injection. Still fatigued but much less foggy-brained 👍
Diabetics must carry needles all the time. If they did confiscate them, maybe you can buy more where you arrive? I am in Canada and do not need a prescription for injectable B12 or the needles here.
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