Hi, is anyone diagnosed with functional B12 deficiency here? If so, could you tell me if you have B12 injections, how long does it take to feel any positive effect? And what frequency might be needed.
Going round in circles between neurologists, psychologists and endocrinologists all doing their best in their own silos but still not seeing any improvement in certain symptoms and they’re still mystified over some aspects. Currently DH diagnosed with autoimmune thyroiditis, NCGS and psoriasis (the latter in remission due to gluten free diet). They’re dismissing B12 deficiency as a cause for unexplained memory loss and cognition because his B12 levels are high end normal.
I’ve found a practitioner who will provide injections to see if they help at all but want to know what to realistically expect
Thanks
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Zmalp
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Symptoms are severe enough to be admitted to a specialist neurology unit for a week and still under outpatient care there while they continue testing. There’s absolutely no recognition from anyone we’re seeing that they need to test beyond serum B12. We’re already paying for private endocrinologist, liothyronine and LDN plus thyroid panels every three months as the NHS won’t pay for free T3 testing. I don’t think I’ve got much chance of getting MMA tested outside of yet another specialist consultant and more months on the waiting list, sadly. I might get the endo to agree in February but the lab will probably refuse as they did with T3
Generally, MMA and homocysteine can detect functional B12 deficiency. If you cannot get MMA, try homocysteine. It is not specific to B12 and folate deficiency can also cause this. Active B12 test, if available, can also be used.
Also, does he have microcytic anaemia i.e. high MCV. That is another indication of functional B12 deficiency but may not happen in all.
If all of these are fine, the primary cause may be somewhere else. Still, in all neurological problems, keeping B12 high helps and I would still do like twice-a-month shot to aid in recovery.
I’ve done some digging around. Good to read that your husband’s psoriasis is in remission. Please note, the last place a gut condition presents is the skin.
So, NCGS, meh to that diagnosis, I mean that Professor Dave Sanders has written about it and I know about the accuracy and reliability of tests. From a mathematical perspective. Your husband may have coeliac disease but I do not know. So, being cautious, he may not just be deficient in B12. He may need other vitamin Bs and magnesium. 🤷♀️
There are people with functional B12 deficiency on here but working out exact diagnosis whether it’s P.A., B12D, functional B12D takes time.
First and foremost, is getting his memory and cognitive function improved.
How long does it take ? Okay, how old is he ? How long can you identify when he became deficient ? How severe are his symptoms ? He has neurological symptoms but maybe he has other symptoms like numb feet, urinary problems, shortness of breath on occasions.
His recovery will depend on how proactive he is. People cannot expect recovery in 2 weeks. If they push themselves or others demand then he will relapse. Those are harder for the person on an emotional level.
Pacing is key. Part of the Nervous System is rest and digest. Coeliac and NCGS can and does affect the brain. Professor Marios Hadjivassiliou is a world leading gluten mediated neurologist and Professor Daniel Aeshlimann is a world leading researcher in Matrix Biology and Tissue Repair. He specialises in the gluten protein that attacks the brain (TG6).
So, good diet, hydration, gently does it. It maybe worth discussing a trial of injections to neurologist and name drop. Professors Sanders and Hadjivassiliou are based in Royal Hallamshire Hospital and the University of Sheffield,U.K. Professor Aeshlimann is based in Cardiff University, U.K.
Just an image of the systems of the body that P.A./B12 deficiency can impact. Dieticians know quite a lot too.
Thank you. He’s 41. There’s been some kind of low grade long term memory issue for around 20years and it seemed to commence when the psoriasis started with some other symptoms which relapse and remit over longer periods. He can’t remember any of it now so we have to piece it together from old conversations and family members etc plus medical files which contain very little.
Serious symptoms started 5 years ago and have escalated in terms of memory and cognition since then. Went gluten free three years ago and was fairly strict but then has been very strict for the last 12-18 months since we finally discovered the autoimmune thyroiditis, so I would have expected memory and cognition issues to show a bit of improvement if it was gluten ataxia. He has had some instances of accidental cross contamination on holiday but we’re strict at home. Neurological symptoms much worse after a virus or infection. Currently in an investigation pathway for Hashimoto’s encephalopathy but the neurologist doesn’t think it is based on results so far - still ongoing but they’re leaning away from that. I’m less convinced. A lot of his symptoms are much better now his thyroid is being treated but these remain:
Complete exhaustion and fatigue with corresponding slowing of brain function after 6pm
Tinnitus
Dizziness when bending or standing (has improved on T3 and LDN though)
Very cold hands
Severe long term memory loss - complete blank, impaired short term memory and some cognitive issues mainly associated with memory, can’t multitask
Some pins and needles in hands
Fatigue makes it much worse and balance and co-ordination is visibly impaired, will sway and drop things
He is in work but in a very different job as he was unable to continue in his former professional career and he has to be very careful not to do long hours or push himself. Doctors are quite baffled when they see him in a flare up about how he can work because he can present as so confused by 5pm when in an autoimmune flare. But he’s not like that at 6am after sleep. It’s quite an unusual memory loss pattern apparently
ETA he’s on a number of supplements to support his thyroid function including methylated B complex, vit D, magnesium etc
You’re diagram is interesting, Narwhal. I was tested last May and B12 was 162. This was not flagged and things had got much worse cognitively, neuropathy in left hand, fatigue…and many others. GP’s response abysmal except one is beginning to listen but not willing to give injection anymore than one every two months. This is useless and did nothing for my symptoms. I began self injecting B12 13th Oct EOD. I am now enjoying good normality, not complete normality but but ongoing improvement. I told the doc what I was doing and he wasn’t phased. That’s a potted history, now my question. In your female diagram showing the bladder, does that indicate for males also. About eight years ago I tested for my bladder function pressure and it was borderline. As time passed I went into retention due to muscle failure and now have an indwelling catheter. My B12 has been reducing probably for years, and because of unexplained fatigue etc I starting recording them in 2021 and have found that they became more frequent until this year they became permanently present. Muscle works with nerves so have you ever heard of this type of problem occurring where a bladder muscle could be affected by B12 deficiency?
B12again, sorry to read, give me a prod tomorrow as need rest. Okay the pelvic floor muscle is in in both male and female. It requires innervation (posh for nerves working).
I had a neurogenic bladder meaning it did what the hell it wanted. My mind - do I need a wee, oh I already am.
My mind thinks I have finished - oh no I haven’t.
Oh look, I did not even know I did that.
I want to go but I can’t, run taps, come on, come on. You will urinate. Push my abdomen, sing, dance on toilet. Hooray, any more nope. Get up, clothes on, No not again.
Male or female anatomy B12 will impact bladder function. 🐳
So, for clarification. Please correct me if I am wrong and I would be grateful, if you may explain a few points due to my own lack of understanding. Thank you.
* May 2022 - B12 was 162 mg/L (which was not flagged).
* Symptoms increased to cognitively, neuropathy in left hand, fatigue…and many others.
* Did you have another vitamin B12 deficiency test ? If so time, date, result, this was flagged ?
* 1 mg/1ml of Hydroxycobalamin intramuscularly (IM) was commenced at what time, date, G.P. Surgery.
* Did you have loading doses - So Every Other Day (EOD) for 2 weeks ?
* Or did your G.P. have their own weird way. Then decided on a Treatment Plan of every 2 months.
* Due to Treatment Failure (note my wording) and being proactive due to your health and Quality of Life, you commenced self administration of 1 mg/1ml of Hydroxycobalamin IM on 13th October 2023.
You have noted improvements. You TOLD (verbally) your doctor at time on date of S.I. Once, you provide me with further details, then, I would strongly recommend that you put it in writing. It becomes part of your notes.
Medical History
8 years ago bladder function pressure - borderline.
Then retention (muscle failure). So, indwelling catheter.
So, you under Urology ? and have a Continence Nurse ?
Hope that helps, back tomorrow as busy day ahead.
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Good that you can identify his medical history and current symptoms.
Professor Margaret Rayman, Professor of Nutritional Medicine at University of Surrey is a specialist in thyroid diseases and has a thyroid condition herself.
A dietician knows lots of biochemistry, Professor Margaret Rayman works in the School of Biosciences. These people also know their stuff:-
If you're in UK, might be worth tracking down any B12 deficiency guidelines your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland has. They may also have something on high B12 levels.
Should be some useful quotes to show doctors in this document including
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
In my words this means if you have the symptoms, you should be treated even if test results are normal.
This case study mentions someone whose B12 deficiency was missed because their serum B12 levels were normal. They developed spinal cord damage due to delayed treatment.
Might be a good one to show doctors if they are dismissing possibility of B12 deficiency due to normal serum B12.
This diagnostic flowchart suggests that doctors should consider continuing B12 treatment in patients who show improvement even if tests such as MMA are normal range.
Thank you. He was tested twice but potentially on insufficient gluten. My daughter is also showing signs of stomach sensitivity to gluten and she’s negative for coeliac too. There’s absolutely no way he can do a gluten challenge. We brought my daughter immediately off it when she started having a few issues. There’s no way I’m risking her immune system.
Iron levels are good. So is folate now but he’s supplementing methylated B complex
I’m having a very fed up week. Exhausted by fighting it. He’s trying so hard to recover and he’s doing everything he can to be well while battling with a system that keeps making mistakes, has no answers for him and just asks the same repetitive questions at every appointment because they haven’t read the case notes. If I have to listen to one more psychologist start with the premise it might be anxiety before the penny drops and they realise how serious the memory loss is, I may scream. That’s exactly why they misdiagnosed his thyroid issue for so long.
I’m sitting here listening to a Michael Rosen interview with Thyroid Trust and crying because so much of what he says resonates.
I just thought maybe we just get the B12 injections and see if they do anything. I just don’t know how long it would take to see a glimmer of improvement.
Every single breakthrough we’ve had has come from me relentlessly researching and pushing and demanding. This time last year he was rushed into Acute Medical in an awful state and I finally got them to focus on his thyroid levels and diagnose after months on the waiting list for them to even look at his case when I’d already had a full thyroid panel done 10 months before showing the issue. I’ve had to push on for LDN. When he’s ill, he’s too sick to cope with them and the questions he can’t remember answers to. The only one I have any faith in is his endocrinologist.
Didn’t intend to moan on, just to say thanks to everyone here
That’s a lot Zmalp : You’re doing a lot to fight for him! All of us know how frustrating and absolutely exhausting that can be. It sounds like you could be on the right track. I’m sorry I don’t know how long it will take to notice a difference from injections . But I just wanted to say , you’re both doing a great job. Read the advice you’ve been given here, show your endo or start injections. Keep going. Good luck.
"I just thought maybe we just get the B12 injections and see if they do anything"
I tried for years to get B12 treatment, was refused by NHS several times despite a previous low b12 result and many typical symptoms (over 50 symptoms) including many neurological and dementia type symptoms, I chose to treat myself.
I’m going to see his GP myself. I can’t see the hospital test results but she should be able to. Her frustration is she can’t get us past horrific waiting lists to consultants hence why we saw the endocrinologist privately plus originally saw the neurologist privately but he then put DH straight into the NHS pathway as an emergency inpatient.
I honestly don’t trust any test results until I’ve seen them with very good reason. There have been so many damaging mistakes from previous teams before we moved here. I’ve had his ferritin done and he’s had other tests previously but absolutely nothing investigating B12 other than the usual with the standard thyroid panel. This niggles me because the psychologist he saw two years ago, brought in as a second opinion as they were baffled , had a hunch it was B12 related and told me to get copies of all bloods myself as the hospital weren’t releasing them to my new area despite requests. I had to SAR to get them. And discovered they hadn’t tested a lot of what they said they had and also had misrepresented abnormal thyroid results as normal.
He’s got another huge neuropsych test coming up and more bloods due so I’m going to ask his GP if she can get more blood work done to look at this area as neurology aren’t finding what they expected yet.
I’ve found a practice who will give him B12 so may well just try it. This is where we are with T3 too. If it works, I’ll push back at the NHS given the severity of his symptoms
Hello Zmalp, I found this short video (from a forum member, sorry can't nb who) easy to understand. Show to those who do not. Maybe it will be of some help .Best wishes .
Tests can be helpful in diagnosing B12 deficiency, but there is no gold standard test for diagnosis. Therefore, B12 deficiency is usually a clinical diagnosis, based on a combination of signs, symptoms, and lab tests.
You might want to follow this link to an article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency"; when it opens, click on the three vertical dots at top left, then choose "pdf". The article will open as it appeared in the medical journal, or it might be downloaded, depending on how your device (phone, computer, etc) is set up.
I suggest reading the abstract, then reading the article introduction as far as the first case study. Then skip to Case Study B and read it. Notice that based on clinical suspicion, B12 injections were begun.
Then skip to the section called, "How should treatment be given?". Notice that two regimen are described, one in general, the second for patients with neurological symptoms (eg, tingling in hands or feet, loss of sensation in hands or feet as tested by poking with monofilament when patient positioned so not able to see when the poking is occurring, headaches, brain fog, psychiatric symptoms such as irritability, depression, mania, etc, difficulty recalling words in discussion, etc), in which case treatment is injections about twice per week for up to two years, with some people unable to reduce from loading amounts. Then skip to the Conclusion. Look for "In case of doubt...", where authors repeat description of a trial period, based on clinical suspicion in the face of ambiguous test results, of injections twice weekly for three months, followed by a thorough examination.
Doctors generally have a poor understanding of issues pertaining to B12 deficiency with neurological symptoms. (The authors of the article say that is because medical schools have been presenting erroneous information for generations.) Doctors generally are aware of blood symptoms (Pernicious Anemia), but unaware of everything in this article, or worse, believe things that are erroneous (see table on second page of the article). This article appeared in a peer-reviewed medical journal, and the authors include physicians/researchers, who assiduously offer citations for all assertions. The contents are valid medical information.
You mentioned, "I’ve found a practitioner who will provide injections to see if they help at all but want to know what to realistically expect." I think it is remarkable that you have found a clinician who is aware of the "clinical diagnosis" nature of B12 deficiency (as opposed to diagnosis based exclusively on test results).
If it were me, I would try to compile a thorough listing of symptoms, using this listing of symptoms:
For each symptom that is present, try to describe the symptom in terms of severity (eg, level of functioning vs impairment). You will have seen an example in the article, in the case review of Patient B. Be aware that some symptoms are apt to show improvement in the relatively short period of 3 months, and other symptom improvements take longer. (I myself have been injecting daily for more than two years, and some symptoms, eg, balance and brain fog, are just now starting to show improvement.)
Then, if it were me, I would proceed with the three (or more) months of trial injections. B12 is not toxic at any level.
Not sure how much this will assist your husband. About 15 or more years ago, I was diagnosed with pernicious anemia. I can only acquire B12 by injection.. Before the injections, I was extremely tired, had some memory issues and felt defeated. Started with one injection for 4 weeks, then one injection every 4 weeks. I now self inject and have for a long time. After the loading injections, I started feeling better almost immediately. The first symptom to respond was the constant dragging tiredness. It took a bit longer for my memory to improve. I’d say maybe 6 injections later. Now I inject when my body tells me to OR every 4 weeks, whichever comes first. I got smart and decided I didn’t need the shots anymore and that was a huge mistake. I also take VitD3 and Folate. Plus 50mcg of levothyroxine. I feel so much better now and I function pretty good.
Zmalp : I did get a functional B12 deficiency diagnosis from primary care, back in 2016.
After trying for a year to find what was going on with me (lower back pain/left hip/groin pain, daily diarrhoea, exhaustion), my B12 was found to be out of the normal range - by 1ng/L ! Relieved that she had caught the problem early, she very soon realised that I was unresponsive to the B12 injections and continuing to get worse. She had my MMA tested - it was raised in spite of the injections. Because she had already checked for renal problems, the testing laboratory was able to confirm her diagnosis of functional B12.
She requested 3 B12 injections a week - the highly reluctant nurses actually only ever gave me 2 a week - but improvements were so obvious that everyone commented. My delighted GP continued this frequency for six months. Until I got worse again. It was at round about this point that I started self-injecting - EOD for the first two years. Then every third day (so back to 2 per week) and now every fourth day -but only because I'm currently using Pascoe and it's got 50% more B12 in each ampoule.
I later also had Coeliac disease and SIBO (can raise MMA and rob B12 from "host") ruled out. Family history, rife with autoimmune conditions: vitiligo, psoriasis, Grave's disease, would suggest Pernicious Anaemia likely - but three IFab tests said otherwise: all negative . Homocysteine was "normal". I had osteoporosis of the spine, now with vitamin D and Raloxifene treatment reduced to osteopenia. My folate and ferritin continue to be unstable on occasion. My MMA finally, on the sixth test, dropped into range - three years after the GP's request for the first test. I can only assume this was due to frequent B12 injections.
Gastroscopies found "flattened mucosal pattern at D1 and D2 "(duodenum) and "patchy gastric metaplasia". I have seen many consultants, had many tests and scans over the last six or seven years. Nothing else was ever found. My DNA was looked at to see whether there was a genetic reason for raised MMA - again, nothing found (Adult Inherited Metabolic Diseases). I have cognitive issues and short-term memory loss yet nothing abnormal was found from MRI brain scan (Neurology)- now that surprised me !
So I'm sticking with my GP's diagnosis of functional B12 deficiency. It has been my personal experience that frequent B12 injections help to control most of my symptoms most of the time, and the research by M R Turner and K Talbot: Functional vitamin B12 deficiency (2009), although quite vague, agrees with this approach. There really isn't much research on the subject.
All of these appointments, tests and scans that I have received have been from NHS primary and secondary care - except the full-panel 6 thyroid tests I had done as a postal blood test with online results for about £60: this to rule out Grave's disease early on, as two of my sisters have it. I don't.
MMA tests are not easy for a GP to get on request - many local hospitals won't be able to oblige. She was successful on her third attempt. I wish you both a similarly tenacious and supportive GP. I believe that she followed up every lead - and there is (currently) nothing left to investigate.
Please do something nice for yourself. A bubble bath, nails done, hair cut. Whatever makes you feel nice. You need just a few hours to be you and breathe.
There’s something in science called ‘seronegative’. It means the blood results come back normal i.e. coeliac disease but they have all the signs and symptoms. A tTg-IgA test is around 95% accurate. Your husband may be the 5%. 🤷♀️
Anyway, with regards to the psychologist, print out 2 pages of deficiencies that can occur due to malabsorption illnesses and give it to them. Then ask them what they know about psoriasis, autoimmune thyroiditis and NCGS. (These are firm diagnoses).
I, personally, would ask them when they attained their medical degree and from which university.
It is definitely worth booking a private dietician’s appointment.
I have coeliac disease which was found far too late. I take all supplements, they have to be taken separately due to dosages, interactions, bioavailability, gluten, dairy and minimal fillers . It’s been quite a journey.
I was having a tough week 😊 Thank you. My daughter had Covid then too.
The psychologist already said she knew little about his autoimmune conditions and was just there to do the cognitive assessment. It is just so depressing when they try to make out it’s possibly psychological. That was checked and dismissed many times when he was less amnesiac than now and yet they still try it just because they don’t understand what it is.
We were back today for the long test and he is clearly experiencing cognitive and memory loss in certain areas of his brain.
Oh I’m so sorry about your week. Sending a big cwtch (Welsh for cuddle).
Please remember that cognitive and memory loss are symptoms of many illnesses. It is a medical professional who takes a good medical history, family history, orders tests, makes referrals to other specialists who order and undertake further tests. It is part of the Diagnostic Process. 3 diseases have been identified.
Autoimmune diseases are chronic conditions which have flares and can be exacerbated by temperatures, weather, foods, chemicals, lack of sleep, too much exertion. For example there are occasions when we have to, like moving house, attending celebrations. These exacerbating events are called ‘triggers’. They are not psychological they are biological. Please note that people with arthritis suffer more with their joints in cold, damp weather. It is that simple.
I hope your daughter is on the mend. You take good care. 😘
I can absolutely tell you she didn’t know what encephalopathy was as he was originally being queried for Hashimoto’s encephalopathy and she was getting mixed up with encephalitis.
She also didn’t know anything about T3 and what role that plays, which is much more basic than HE -admittedly a rare condition.
She said rather than her see us with the results, she might ask his neurologist to follow up - and he’s gone as far as he can without seeing the results. In fairness he ordered the tests months ago.
Tests were fairly basic type with them looking at the level of cognitive and memory deficit. From what he told me immediately afterwards, I know issues will have shown up e.g. when asked to list some animals, he could only think of three kinds - the family pets. Yesterday he looked at a drawing of a bat on a food label and thought it was a bird - couldn’t remember what a bat is. It’s anything he’s not coming across frequently- puff, gone like it was never there. Always worse with the tinnitus and dizziness and extreme fatigue. It’s got to be some metabolic or autoimmune pathway somewhere. There’s absolutely no structural issues on MRI or EEG.
She was trying to suggest at first it might be a stress response to being ill but nobody gets that level of impairment with feeling stressed!It was an assistant psychologist administering the test so possibly the penny will drop when she sees the results.
I wish you all the best with it. Oh bless hubby and you.
Yes, it is stress but it is oxidativestress which is a physiological response or biological response. Causes includes lack of oxygen to the brain, inflammation, low blood sugars, problems converting T4 to T3, deficiency of amino acids, vital amines and minerals. Magnesium is super important for the brain, nerve impulses and muscles. Magnesium threonate crosses the blood brain barrier as it is more bioavailable.
We give magnesium sulphate in emergencies for seizures. Celiac.com have a huge list of what people with NCGS can be deficient in. Scott Adams has been extremely thorough.
I haven’t been formally diagnosed with functional B12 deficiency yet (I had high MMA, high normal b12 but had also been taking oral B12 supplements including the MORNING of the blood test 🙄 which can affect results), but fwiw my B12 loading doses were incredibly helpful symptom wise. I’m now just waiting to see a B12 specialist on Thursday to optimise my treatment. It also looks like I might have NCGS but working that out is early days.
I didn’t have anaemia but my MCV and MCH were also high range, which I now understand as typical of B12 deficiency. My MCV very slightly went down when retested a few weeks after my loading doses - my MCH went up but that might be due to the ferritin treatment. When I started I also had B9 deficiency and borderline low ferritin and vitamin D.
He’s just finally had his neuropsych memory assessment but it’s usually months here for them to get back with results.
His thyroid levels are back and TSH is suppressed if anything so it’s not that causing it. Free T3 now normal too.
Going to try to get hold of the GP. Did speak to a friend who works at the hospital and she’s not sure if they test for it there but said get the GP to try.
On a positive note, neurology can’t find any damage on scans and genetic screens are clear - got the results back last week on the latter. The negative side is nobody has a clue what is wrong with him. It’s so frustrating because he just deteriorates while they pass him round waiting lists.
My NHS GP recognised the B12 deficiency and give the loading doses but the formal diagnosis has just come recently from a private sector specialist. In the end he didn’t think it was functional but more classic B12 deficiency because of the supplements (he declared an in-range active B12 test as low because it should have been higher with supplements). It was not as expensive as it could have been (£200 plus a private prescription) if you want the details?
Interestingly I’ve got an NHS appointment with a neurologist tomorrow so I guess we’ll find out what they say!
Good to hear your husband doesn’t have any obvious damage, but I really hope you get some answers soon.
What type of specialist is it? I have a friend who is a gastroenterologist and she told me to try the GP first when I asked her but been told today they’ve got no appointments again and got the most ridiculous message back from triage GP who clearly has no idea what I’m talking at all.
Do you mind telling me which private testing you used? We usually end up having to go private for everything. I only got to neurology because I booked a private consultation first and then he was rushed into hospital for tests within 3 days as they were so concerned about his cognition. Today he couldn’t list more than 3 animals! They cannot understand his cognition and memory loss presentation at all. My daughter has just had Covid and he always flares up if he has a virus so I suspect he’s in a flare up now. But the memory he loses after every flare doesn’t return even though his processing gets a bit better. It always comes with a host of symptoms that fit into hypothyroid or B12 issues though.
When he was examined by a specialist psychologist two years ago, she was so sure it could be B12 that she told me to SAR the hospital to check they’d tested what they said they had. They hadn’t but when we tested, his B12 appeared ok and literally everyone we’ve seen since has never considered functional B12 deficiency. He’s had so many other tests, it makes no sense for them not to check this out too
He’s a B12 and iron deficiency specialist based in Cambridge - check out the Cambridge Iron Clinic. Before I made a booking he also asked for blood test results and symptoms, and indicated he thought it was B12 related and he could help based on those.
Have you come across that pre-print of an academic paper which was a case study of someone with normal B12 blood serum but hardly anything in their cerebral/spinal fluid?
There is so much that the medical world do not know about B12, that many of the professionals say that they should treat the symptoms and not the blood tests. I am deficient with a high B12 serum test. You have been told by a professional that his symptoms appear to be those of low B12…so I think that is where you need to start. If you can get an Active B12 test done, that may help give an indication. There are many cases where a diagnosis can not be confirmed until injections have started to make a difference. You seem to be going through a really rough time - injections are not toxic in anyway, so it may be worth trying sooner rather than later.
Thanks everyone. This has been very helpful. I’ve had to digest in small chunks as I’ve just had to deal with his latest thyroid results and neuropsychological assessment appointment as well as childcare over half term so I haven’t liked some replies until now. I do very much appreciate people’s time to help.
I think I’ve realised from the articles that it could also be PA with a false reading and I don’t think he stopped supplements for 2 weeks before testing anyway. A few days, yes, because of biotin but he definitely won’t have had 2 weeks clear when the NHS tested as they’re so unpredictable. Private testing is for a thyroid panel so we get his T3 results and vit D.
I’m still battling to get a GP appointment - they appear to be in meltdown again so I will see if they can see him this month, otherwise will book in with a local health clinic privately again who specialise in vitamin injections. I may get lucky and neurology may get back to us soon but I’m not holding my breath. Going to ask for MMA and homocysteine testing and for them to trial vit B12 injections anyway.
One last question: we’ve always been confused as to why it gets so much worse in autumn and is a bit better in summer. We’d thought maybe that was thyroid function but does anyone on here also have that issue?
We also think the exposure to viruses in autumn could be part of it but I thought it was worth checking to see if others have this too.
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