I finished my loading doses +3 a week and a half ago, my active b12 level was 16- classed as sever deficiency i believe.... Saw my gp this week as my fatigue is getting worse, shortness of breath is back and my nerve related back/hip pain and heaviness in my arms in legs has continued/got worse. She basically said they've ruled all the urgent things out- I've had an echo, chest xray, bloods for heart problems. I have re referred myself back to my neurologist, who I was discharged from just 1 year ago for something seperate, due to my neuro symptoms and my gp not seeming to be bothered about these. I feel this will cut out me having to argue with my gp, as I'm guessing my neurologist will be able to make a plan and this will be followed with no hesitation. I am aware that my gp aren't working to nice guidelines, I had to quote this to even get the extra 3 loading doses. My gp agreed to do bloods for vit d, which came back the lower end of normal but of course they've said its fine, I am taking supplements for this anyway. Thyroid, diabetic screening and crp all normal. My gp said if neurology find nothing then she will refer me to respiratory for more investigations because I'm breathless but then said its more than likley fatigue and its just how it is. To be honest I'm feeling so stressed again. My fatigue just feels extreme, I'm constantly yawning, have tension in all my neck and shoulder muscles, my joints all hurt and the breathlessness is just becoming so tiring. I've had less than a handful of better days during my treatment and once finishing😮💨. I am unable to go back to work or do any of my normal daily activities. My main question really is is this even normal?! I feel nearly as bad now as I did when I found out I was deficient, minus chest pain and constant palpitations. I cant stop thinking is there something else going on thats not been picked up. My gp doesn't seem phased.
Has anyone else struggled with the crippling fatigue or should I be pushing for more to be done? My gp basically said any problems go to a&e because there's nothing more we can do for you at the moment 🥴. I've been in hospital twice before they found out I was deficient and I'd much rather be supported by my gp than go to hospital unless it's life threatening of course.
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Hgsn
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My folate was tested and came back within range. I had lots of general bloods done in hospital, along with my b12 and this is how this was found. All my other bloods were completely normal. I am due to have my level checked in April, they will then also do my IF to see what's causing it but through this forum I can see sometimes this can come back negative when actually it isn't. I have been told if I need another injection it will be given in April once this result comes back. I just don't feel they have an understanding of b12 deficiency. I'm having neuro symtoms but being told to get on with it 🥴
I dont take any medications apart from vitamin supplements and don't seem to have any of th the symptoms of chrons ect.
They have ruled out anything cardiac and the bloods all came back normal the other day so other than a neuro review I don't think they are planning on looking into anything else.
I know being completely ignored. I had to quote the nice guidelines to get the 3 extra after 4 days of finishing my loading doses I was awful. I'm sure my neurologist will end up instructing them to continue doses once I am seen next week, she is very through and listens to the needs of her patients. I know without her thr battle will continue with the gp and its so deflating. I'm not sure why they are so resistant to give a meditation thats needed.
I have seen the same gp twice at my practice but I will request to see someone different if needed.
Were your symptoms better when you were getting your loading doses? If they were then it would be wise to keep loading until your symptoms are gone. It might be easiest to take things into your own hands and self-inject in order to get enough B12. Lots of people on this forum self-inject. When you are feeling so crappy, it is hard to have the extra energy you would need to effectively battle the broken medical system.
I feel like my symptoms flared with the 6 doses initially but I put this down to my body just dealing with the high doses. With the 3 extra everything really calmed down for me. I wasnt 100% but things got alot better. Since stopping the symptoms have just crept back in day by day. I've seen people self injecting and it's something I was going to discuss with my neurologist maybe. I was trying to hold off as my levels have been booked to be checked but I know waiting could be dangerous also. I'd also looked into going to someone who is doing b12 injections.I'm getting married this summer and I need to be able to function. With this level at fatigue I'm just finding everything hard.
People with nerve pain often find it gets worse before it gets better. It is because the nerves are healing. The guidelines recommend that you DO NOT retest B12 levels after you have started a course of injections. Often they are high after injections, but this does not have the same significance as if you had high levels with no supplemental B12. They are probably not going to be low even if your body is not getting enough B12 because you have had injections recently. So it is pretty pointless to retest the B12 levels. Your doctor should know that.
They're pushing for 90 day b12 check to see how much is fallen and do the intrinsic factor testing. They appear to be very number focused but I'm trying to advocate for treating my symptoms not the numbers. My gp has documented I'm still having neuro symptoms but advised I see my neurologist instead of just working to the guideline. I expected fatigue for a while because my level was really low but it seems to be getting worse the longer I've gone without and the neuro symptoms are still present. I did have days of feeling bright and more able whilst having injections mixed with periods of my body repairing and not feeling great.
So sorry this is happening to you. Mine ignores guidelines too. I did complain in letter but the GP was horrible to me and they have 'lost' the letter. I am afraid if I compain too much they will ask me to leave and then I'll have to learn how to play another practice's system. I think you may have to treat yourself, and you probably can't wait while they ponder and refer you... it took 15 months to see a neurologist, I was so ill when diagnosed I couldn't have waited that long without injections (they stopped mine after loading and pronounce me cured - which I think is similar to what has happened to you).
It sounds as if you are B12 deficient and must have EOD B12 injections until you are on an upward trajectory. You make no mention of your ferritin count. If your ferritin is below 100 and you are B12D your debilitating symptoms could also be iron deficiency. I found that I had to be very, very ill before I was regarded as clinically anaemic but iron deficiency not classified as anaemia on NHS scales is equally debilitating and needs treating with haem iron, a bovine derivative, rather than a synthesized chemical iron. Much kinder to the digestive system.
They haven't actually tested my ferritin, as far as i am aware. Its been all half done as my b12 was tested in hospital, without my IF being done and my gp has the attitude of you're fine you've had the doses 😮💨. Maybe I need to request this to be tested. I am just deflated with having to fight to get an appointment and the attitude is what do you want us to do?! I have brought some iron supplements but have held off taking them but maybe I should, would this support?
I'm sure it would. Knowing your ferritin level is essential with PA, in my view. I had no peripheral neuropathy, self-injected EOD for a year but reached an improvement ceiling. I then followed the ironD trail. My ferritin was 30 which was 'normal' in the medical range, saw a haematologist (privately), had a ferritin infusion (privately) and began haem iron, not the chemical one the haemat. precribed. I found out about haem iron on this site, from Three Arrows Nutra in the US. I began to improve again. The anaemia part of pernicious anaemia does mean something. With B12D you can't make good blood.
My GP sounds similar and I'm afraid if you can't realistically move GP you have to work round them. I think you have to self-inject. After a lot of research and much help from this group I have stabilised to be OK with some bad times (levels weren't as low as yours, about 150, and had been low for a long time). My GP ignores NICE guidelines, my letters and my neurologist's sensible recommendations (so don't believe they will pay attention to the neurologist, sorry - but at least they refered me - luckily the retired GP who spotted B12D refered me originally and I have seen the neurologist twice but the wait is long). I have managed to make progress by research, injecting myself weekly (more if I feel bad or am stressed), taking minimal supplements (vit D, Folate, K), good diet and getting different members of the practice to conduct tests when I can (they do an annual blood test and mostly will test what I request). This group has helped find the strength to keep fighting the cruelty/ignorance of both GP and GP's admin staff. I was low on folate, deficient on ferritin and vit D but seem to have recovered those over a few years (it was slow). Also my MCV has gone down by over 15% back into the normal range - this was gradual over 6 years of injecting. I also reviewed past blood tests going back a few years, and found that although I hadn't had many deficiencies, many markers were consistently borderline low, which I now think indicates something isn't right -- I am happier to take supplements to get well into the normal range if I can, I suspect being 'almost deficient' may be bad! I do hope you find a way!
I freaked out early and started self-injecting 1mg per week hydroxy cobalamine as communication with GP was so poor and they were clearly not following NICE guidelines. I think a lot of forum users buy from German pharmacies it quite cheap under 20 Euro for ten doses including postage. Far from idea, but this is all far from ideal.
I am really considering this. I feel like even weekly would just give that boost for me to be able to function properly but then I'm also conscious of my neurological symptoms maybe needing more regular doses. I'm in the UK but would be interested in the link if you have it.
I think we must have the same G.P. Mine keeps sending me to A&E! Last time it was because I had an eye infection for goodness sake. I had a reaction to what they prescribed, but they couldn't even change the prescription. No wonder A&E is packed. Most G.Ps, I'm sure, got their qualification from the back of a Cornflake packet, or so it feels to me.
As for cardiology, its taken me ten years to get re-referred due to some junior doctor just out of nappies telling me that my palpitations were due to stress and discharging me, despite two consultant cardiologists saying there was a problem. Cue G.P. offering antidepressents. Erm, no, I'm not depressed, I'm ill. Turns out I was right, as I DO have a heart condition. Going to the hossy today to be fitted with a heart monitor for the week so that we can see exactly what's going on - that was the result of the G.P sending me to A&E and me begging the Doc there to refer me back to Cardiology instead of just sending me back to the G.Ps care, which means no care!
Ok, I'll wind my neck in now and crawl back under my rock. I just wanted to know that I hear you and completely understand where you are coming from.
Sorry you're having such a rubbish time. I do feel like my chest pain and palpitations was fixed by the b12 injections and I've only had slight flutters on bad days but no chest pain. My echo was normal. Hope your monitoring gets you sorted. GPS are so frustrating. When I went back to mine on Monday I said to her I can't function and I am not back at work "oh really" was the reply. I had one of the nurses tell me I "looked fine" when having my 3 extra doses. I'm normally a very strong person and I just broke down crying with frustration. She had never seen me before but apparently I looked fine, although I felt AWFUL.
I work for the nhs so I know exactly how it all works and I know I am being fobbed off, makes it even more frustrating. I don't want to annoy my gp or tell them how to do their job but if they can't work to a simple nice guideline 🥴.
Numerous times on my notes: 'patient looks fit and well'
I'm a nurse who trained in the 80s and the care now appalls me, or should I say the lack of care.
I diagnosed my own P.A. by recognising the symptoms and doing a private IF test, as I couldn't POSSIBLY have P.A. It was positive, but they wouldn't accept a private test and as my B12 levels were 'normal' they refused to test - so I refused to leave the room until they did. Still only got one jab, no loading doses, and then 3 monthly. Guidelines? They are just that, guidelines and don't have to be followed apparently! I now jab myself twice a week to stay stable.
When my thumpy heart started getting worse - more severe, more frequent - I got concerned enough to go to a new GP, while my own GP was away on holiday. He sent me to the hospital to have a 24hr monitor fitted. This showed about 4,000 episodes : "ventricular ectopics" - which have no known cause, can start for no known reason, and stop in the same way. No need for a cardiologist as primary care can deal with it. I was offered statins, which I refused - preferring to see if this would in fact go on it's own. Yes, it did ! After a few months, it had gone and did not return.
This was a relief, as both my mum and dad had had heart problems.
So the only downside was that this new GP panicked -and had my NHS B12 injections stopped. This was because I was also self-injecting.
I honestly believe that the thumpy heart had more to do with B12 deficiency symptoms than being related to frequent injections. I have now had frequent B12 injections for about 8 years - and never had another episode.
My usual GP, on return from her holiday, assured me that the newbie's action would change nothing - she would continue to monitor my ferritin, folate, vitamin D and thyroid...... but not my B12 as "pointless" ! This GP has now sadly left the surgery.
I have been found lately, quite by accident, to have CAC (calcification of coronary arteries) and do now take statins. I'm now already being pushed to increase the statins x 4 ! It's only been just over a year, so you can understand my reluctance. I am now trying to get my cholesterol level down by diet and exercise - hoping this works before the next test.
My thumpy heart got better after starting jabs, but has got worse over the last few years again. ECG shows a change which the doc said could lead to SVT in the future, hence the futhur tests. He did prescribe me a tablet to try and control it, but it makes me feel sick, so I guess that will have to be changed.
I started self injecting B12 late December as my GP surgery refused even with 2 consultants recommending it. I saw partner GP 4 weeks ago and was told they do not follow NICE guidelines. They only do 6 loading doses in 2 weeks then one every 3 months for people with a definite PA diagnosis. I don't have this. I had 50% reduction in B12 over 12 months and neuro symptoms. I'm awaiting IFAB test result. I pointed out to her there is no definitive test for PA. Shoulder shrug. I told I self inject and symptoms had receded. She ordered head MRI. I asked for support to SI, B12 on prescription but was refused. At least they know I SI now!
Oh gosh. Did they give a reason for not following the guideline?! Surely it's what it's there for?! Never heard of such a thing. I dont understand why GPS are so resistant?
When I drilled down, she said it was staff time and space. They have so many people wanting B12 injections. I think the first ever NICE B12 guidelines in March 24 led to lots of people asking for them. GP surgeries were running on fumes as it was. They can't cope with the demand.
Maybe if the offered support with self injection they wouldn't have to facilitate appointments. All services are stretched, the service I work in within the nhs is one of those also suffering but when there's patients needing treatment they need to review the way things are being dealt with.
Maybe your report could be the one that tips the scale. I think we're probably all guilty of 'can't be bothered', I know I am, but if we don't report it's definite that nothing will change.Please don't think I'm telling you what to do, I'm just sick of these incompetents taking us for fools while taking huge salarys at our expense!
I have considered doing it. But I live in a smal town where the culture is not progressive. Everyone knows each other and reinforces the status quo. If the contex was a city, I'd consider doing it.
I see from your original comment that your active B12 test showed severe deficiency, but ruled out all urgent things. Do they not consider this deficiency to be urgent. I'm sorry you're finding all of this terrible resistance to regular B12 injections. They waste so much time and money looking for reasons not to treat us properly. i really hope you get this sorted soon. I think we all get the occasional day of awful fatigue, but to have it frequently is dreadful x
I dont feel like they feel it's urgent 😣 but it feels it for me when I'm struggling through everyday. I understand the b12 is going to take time to settle in my system but it just feels like having more regular injections at the moment would help me and my neuro symptoms.My gp said all the 'life threatening' things like heart attack and clots have been ruled out so she's happy... I'm glad she's happy! 😮💨.
I feel like such a moaner but I'm normally fit and well, have a young child and a busy life to be getting back to. I will definatley look into self injecting as I cant continue like this for much longer. I've got so much to look forward to this year and its just typical 😣
Welcome to the crazy world of B12 deficiency, where GPs would rather give you anything but B12... Your fatigue will improve with enough B12, but it takes time and the first few months are the toughest as your body comes back to life using tons of energy. Think of it like turning a supertanker around - your body had just started the manoeuvre with the loading doses, then ground to a halt so is now drifting unproductively on rough seas until you restart the engines and point the right way! I really hope your neurologist endorses eod injections, and if needs be you can source your own and take control of your healing. I wish consultants could report GPs for non compliance - they must tear their hair out too! Wishing you success.
Thank you! I know it seem crazy, they know the issue is b12 but they're trying to look for everything else but not sorting out what they know the problem is 😣😮💨. Me too, hoping my neurologist holds some weight in my treatment.
The old saying is "if you hear hoofbeats, look for horses" But it's as though our GPs have never seen a horse, and been trained to look for zebras. Or unicorns! Blimey I'm full of mad analogies this morning!
My GP was the same but eventually more accepting after I saw Dr Klein and had a diagnosis of non immune PA. I think it covered his 🍑! I now get 15 ampoules a month for SI which I'm very grateful for, but expect to be cancelled every time I order... So wrong that the correct, cheap, safe treatment should feel like a lottery win 😡
I'm afraid that you'll probably have to take things into your own hands. If you're willing to SI, it's worth getting everything you need ordered and in place for after your test. Also I would change GP if you can, you may not get the treatment you need, but it might improve. I'd already done my own loading, I still SI eod or sometimes daily, but I get 3 monthly NHS jabs since changing GP practice. Having a GP that at least tries to help a bit makes a huge difference.
Hi Hgsn. So sad to read your story. Very familiar unfortunately. I supplement Folate alongside B12 . My GP told me my Folate was ok but actually my B12 worked better having it alongside. The NHS ranges are what they are I’m afraid. Also as others have said keeping an eye on your iron levels too. My ferritin levels were too low for me to help me SI B12 . I supplement with heme iron and get my levels checked regularly too. My vit D was lower so again supplemented. I also take a B complex with only 10 mg of B6 [ can cause probs for me any higher ] Try to SI if you can . My fatigue was horrendous too but much better since being on this protocol . Good luck with it all
your experience sadly is very similar to that of many of us 😖
Whatever the cause of your low b12 level, you have many symptoms of pernicious anaemia and obviously need the injections to be continued according to Nice guidelines or these symptoms will become worse.
I didn’t get anywhere with my GP until I wrote a letter to the surgery after they kept reverting back to one injection to be given 3 monthly.
Over a couple of years I saw two neurologists who didn’t have a clue and agreed with the GP that 3 monthly would be adequate as long as my levels were above 1000 with injections. They also agreed that in their experience any returning symptoms were likely to be imagined!
I had a blood test a few days after an injection and my level came back over 1500. After waiting six weeks my symptoms were getting really bad again but they wouldn’t give an injection without a blood test, this time it was around 750, the GP argued that it was well within range. I pointed out that over the 6 weeks it had dropped by half and in another 6 I would likely have no b12 left again, reluctantly he arranged for me to have them 2 monthly.
This was not enough for my symptoms to recover and I was really struggling, at that point I wrote the letter. I asked for it to be stored on their files, pointing out that if my neurological symptoms worsened it would be because I had been denied treatment according to Nice guidelines. My IF had tested positive and my serum level was 58 when first tested so with the symptoms I had the surgery should have tested earlier and treated me before my condition became so serious.
My GP phoned and asked what frequency I wanted, he refused to start every other day or twice a week as this had already been restarted a couple of times during my early treatment and he said it couldn’t continue indefinitely. He wouldn’t budge on monthly, he said this would be on trial for one year. This has now continued for 2-3 years, some of the nurses have pointed out that this is unusual and they check that it is on my records, I usually try to get appointments with the ones who don’t question it.
I chose not to to inform the surgery that i self inject in between, usually weekly as I feel they’d probably stop my injections. I also now refuse to have my b12 tested although it keeps being requested when any bloods are taken, which is weird as it was never tested before my deficiency diagnosis.
Do you have access to your test results on the NHS app? Either print these out or ask the surgery for copies of all your results. These are often marked adequate, no treatment or within range when they are right at the bottom of range. Sometimes they are below range but the surgery do anything about it.
My ferritin had consistently been well below range for years with folic acid and vit D at the bottom of range so I always check these now.
If you do test positive for IF you must keep the printout as at times things seem to disappear from the record. Make sure they know that only around 50% come back positive even though the person does have PA.
It just seems unbelievable to me that so many of us are suffering because of a gp making a decision based on numbers. I still don't understand why they're so resistant to give out the injections if people are symptomatic? If it was a medication that could cause over dose I would understand but I believe there is no risk of this? Do they really think we want to be poked all the time and injected unless we needed it. So sorry you've had such a rough time. After my 6 loading doses I had to put a appointment request in quoting the nice guideline and that these shouldn't have stopped and they agreed to the 3 extra. I felt these actually boosted me the most. I managed okay for about a week, not 100% but enough to keep me going, so even this would be good for me as my symptoms did all really calm, apart from arm weakness.
I think after my appointment with my neurologist on Wednesday I'll see what happens. If not I will be writing into my surgery as you've advised and if worst case I'll have to start self injecting before they even check my levels in April and will just request my IF to be done.
I have patient access so the vit d , thyroid and diabetic screening she requested this week is on there. I previously had vit d levels of 28, from Jan 2024, with no notification it was low! I'm at 89 now (50 -220) but I had been using spray vit d for a month and 4000 tablets for around 1 week. My initial bloods that found my b12 deficiency, after a a&e Dr saying there was nothing wrong with me as this was my second attendance, were done at the hospital. When he saw how low my level was with my results he then changed his mind and said he didn't know how I was functioning 🥴. I attended with severe chest pain, so breathless I couldn't talk in a sentence, dizziness, fatigue. I had a 1 page print out of these results but my folate wasn't on there. I asked my gp this week and she said my folate was 'fine'. But fine to them and what's actually fine is 2 different things. I think I'll request for these go be printed by the surgery and just see if admin will allow me to pick them up.
It’s true, it all seems to be done with screens and numbers nowadays. B12 will not harm us, I once had a GP who kept on about toxicity but if you research it then you’ll find that b12 can sometimes be high BECAUSE of a serious health problem, it’s not THE CAUSE of the problem.
All your symptoms are very familiar, don’t hesitate to self inject if you have to wait too long.
The surgery has to provide you with printouts of tests if you request them but obviously they may ask that you collect these at a later date if they’re busy.
I’m so sorry to hear you are so symptomatic. I hope you can get enough b12 to follow the guidelines either from your doctors or on your own. I too had lots of fatigue, migrating body aches, heaviness and shortness of breath that seemed to get worse after starting b12. In the end I learned, for me, these were not from my B12 deficiency but rather from ME/CFS. This is a mind body condition that seems to develop when the brain feels unsafe. The brain stem gives you these symptoms in an effort to protect you, much like it does when you are sick with a cold or flu, or when you are anxious and get a stomach ache. It is especially common after insults to the nervous system from viruses, b12 deficiency, head injuries or psychologically traumatic experiences. The treatment is to convince your reptilian brain that you are now safe and it can stop creating these symptoms to keep you down. This brain retraining can be hard but is very possible to do. I don’t know if that’s what is going on with you but if you want to learn more this you tube channel has great information youtube.com/@raelanagle?si=...
So this is also something I have looked at. My mom has suffered from CFS due to stress, bereavements, illness at different times. She keeps saying to me everything I've had since having treatment may be down to chronic fatigue as she understands how hard this can be and not just my body but also my mind has been through alot whilst being unwell. I will take a look at this video and maybe some others online. How did you manage your cfs?
Hi there. Firstly, I am not a doctor - just another chemist from the states. After boggling my mind with his knowlege of assays, and me saying so , my biochemist dad once told me "A chemist is nothing if he is not an analytical chemist. He might not be anything else, but if he's an analytical chemist, at least he is that." That said, I am simply appalled by the lack of analytic inquiry in much or most of the medical community, as evidenced by your thread here and more widely elsewhere.
So, you've been tested for ferritin, B12, folate. B6, and D3. Is that all???
You didn't mention Omega-3's. But apparently you're a young mother. Did any of your symptoms manifest during or after pregnancy?
Okay, a given doc will only test what he or she knows. Most are not scientists, they follow the guidelines. With severe B12 deficiency you were apparently diagnosed with auto-immune PA. Very well. But as you have surmised, that is likely not the entire story. Aksundell describes me/cfs as "A mind/body condition that seems to develop when the brain feels unsafe." Okay. But why does your brain feel unsafe?
Your symptoms include severe chronic fatigue, breathlessness, muscle stiffness, and palpitations. To me -- again, not a doctor -- this screams pseudo-hypoxia: your pulse, blood pressure, and measured blood O2 saturation may be fine, but your autonomic nervous system is nonetheless suffocating. The oxygen is there, but your nerves and muscle cannot convert enough of it to energy.
B12 deficiency can certainly do this. But B12 has seemingly been addressed and yet your symptoms persist, alleviated periodically by therapeutic doses of B12. And perhaps that is the entire story. But B12 doesn't act alone. None of them do. Admittedly it isn't much, but if there's anything I've learned of biochemisty, it's that none of it is a simple as it appears, and none of it appears simple. The classic nutrient-deficiency disease resulting in pseudo-hypoxia is beriberi, a great imitator caused by thiamine (B1) deficiency. B3, B6, and B12 deficits may also contribute.
IF you've an auto-immune condition depleting your B12, what else might it be depleting?
Thank you for your reply. I basically went back to my gp this week and expressed my concerns that something might be being missed and asked about options for more bloods or other things that could be linked that could be happening. She agreed to do some basic bloods but her response basically was everything life threatening has been assessed soo...It interesting how easily they can dismiss people because its not seen as 'life threatening' to the person who's not suffering the symptoms.
My daughter is 5 so this has nothing to do with pregnancy or recent child birth.
My breathlessness at rest has calmed down today but I've literally done nothing apart from take a shower, change, eat and sit with my daughter while she's played. It's still an issue when I am active and moving around. I keep thinking maybe it is just the fatigue and my body recovering snd repairing.
On days I have felt able to I have done bits around the house or popped to the shop. A couple of days I know I've over done it and ended up really unwell for 2/3 days after so I am trying to be conscious not to do this. It's just hard.
Well, it’s complicated. Once I read the description of it I knew it was what I had. cdc.gov/me-cfs/hcp/clinical.... How to treat it is evolving. It seems like the people who get better retrain their brains not to be scared and to feel safe. There are lots of programs out there that can help. They usually cost a few hundred dollars and last several months. Some people get better right away, but most take time. I’ve been working on it for 18 months and have made a lot of progress but I’m not fully better yet. The first thing is to stop pushing yourself, so only do what is comfortable and won’t lead to worse exhaustion the next day. Think about how you are holding yourself, thinking and behaving in the world. If you are tense, in fight or flight your brain takes that as a sign that you aren’t safe. So, you need to relax your body, change the way you view and think about your world and then slowly you can increase your activity and build your tolerance for activity. Meditation especially yoga nidra seems to be helpful to increase neuroplasticity and change your deep seated perceptions of yourself and your place in the world. I took this doctor’s course resilience-healthcare.com/t... and also this one ansrewire.com. This page seems to have some good resources recoveryfromcfs.org/resources/
Thank you for this. It does make sense as I can't say it hasn't been stressful. I had all the horrible initial scary symptoms for 2 weeks, backwards and forwards to the hospital and gp before they found what it was. My gp told me she thought I had undiagnosed lvh causing my symptoms and when I returned back to the hospital after being discharged the attitude was why are you back, as I was there a week before with the same symptoms. It has been highly stressful not knowing what's happening, being so ill and almost not believed until my b12 result came back. I'm usually fit and well and that is something I always recognise as a blessing, so mentally this has knocked me for 6. I havent been back to work since I broke up for Christmas and all I can think is I'm getting married in 6 months, will I be well enough will my symptoms come back as bad as they were, will I keep getting passed around with nobody actually seeing the full picture. The second attendance at a&e the Dr said "I think you're just being anxious" of course I was! I couldn't breathe and my heart was pounding out of my chest, along with all the other things, at this point I was unaware of the deficiency. To be honest since September life has been stressful with my dad being admitted to hospital really poorly, my daughter starting school and a friend of mine went into sudden cardiac arrest at our house and me and my partner were doing cpr, luckily saved his life. So I can say my stress levels have been high for a while which could be adding to my symptoms also. I will take a look at all of this. I know my body is repairing itself and hopefully it eases.
Thanks for this. I've added Resilience Health Care to my Resources. I'd note that neither Ms. Agle nor Dr. Kennedy and her colleagues completely eschew "conventional" medicine and diagnostics; only that hope -- and treatments -- still exist when those fail to uncover underlying pathologies. Dr. Kennedy's parable of the conscious-brain parent throwing open the closet and showing the child within "See, there are no monsters: you are safe!" is telling. Because if she throws open the closet and finds "OMG! There really are monsters!!!" then those monsters must be exorcised before the child can recover. That is, you've got to set the basic physiology right as well: Diagnosis, Prognosis, Treatment.
Recognizing monsters can be hard.
ME/CFS is frequently linked to Mast Cell Activation Syndrome (MCAS). This is an inflammatory condition, perhaps auto-inflammatory. Some victims have found relief through very-low inflammation diets, such as carnivore: youtube.com/watch?v=DGQTL_W...
Hi Hgsn. My symptoms were much the same as yours. I was going to the GP for some time telling her I had PA (big mistake). My GP’s advice was I didn’t have PA and refused B12 injections. She did numerous blood draws and referred me for every conceivable test at hospital. Following a fall in the road and laying there with a nose bleed, in floods of tears and with no desire or energy to get up I knew I had to sort myself out. I went to a private specialist and have SI twice a week now for the last 6 months and feel so much better, although not fully recovered yet.
I’m sorry to ramble on but I just wanted to share with you that the only hospital specialist that I have been referred to who knew what was going on was the lady at the respiratory clinic. She recognized I had macrocytosis (over large blood cells due to lack of oxygen) and made the link to PA.
I note your GP is referring you to a respiratory clinic so my advice is to push for this as soon as possible as it may be your way forward.
I wish you all the best of luck and hope you get all the help you need soon. If you wanted to ask about the private specialist I saw please pm me.
Thank you for your reply. I an glad you managed to get seen by the right people and start to get sorted. It really is so frustrating seeing everyone struggling with their gp's when it comes to this. My fatigue has calmed down after resting over the last few days but my neurological symptoms are worsening 😮💨. Glad I have my appointment this week and hopefully will come up with a plan to keep things under control 🤞🏼
Just thought this might help, it's a brief outline of what happened to me.
Some links I post may have details that could be upsetting to read.
I suffered with chronic fatigue for many years and was told it was probably ME/CFS. I also had fibro type symptoms and multiple neurological symptoms including spinal and dementia type symptoms and many other symptoms affecting other body systems and also mental health issues.
I was never happy with the CFS diagnosis as in UK, a diagnosis of ME/CFS is supposed to be a diagnosis of exclusion. This means a diagnosis of ME/CFS should not be given until all other possible diagnoses have been ruled out. In my case some of the other possible diagnoses had not been ruled out.
I did have one B12 result which was well below range for which I was given 5 or 6 loading injections then nothing else despite me querying that I should have had more at the time. Later B12 results were within normal range.
I trusted the GPs at the time (big mistake on my part) and forgot I'd had B12 injections and carried on struggling for several more years. I eventually realised that I was headed for permanent dementia and neurological damage if I didn't find out what was wrong with me.
The next step was to write out every symptom I had and research every symptom's possible causes. After months of trying to read and research with a brain full of cotton wool, I had looked at many possible conditions and narrowed down the possibilties to about three conditions of which B12 deficiency was one.
I persuaded my GPs/specialists to order tests to rule out the other possibilities which left me only with B12 deficiency
I still think there's a slim possibility of Lyme disease as doctors wouldn't give me a Western Blot test, only the more basic test.
I accessed all my blood tests over and at this point remembered the B12 injections I had previously. It was a light bulb moment for me. I could also see clues on previous Full Blood Count (FBC) results.
Tests for PA and Coeliac disease had been negative but I didn't have all the possible tests and was never referred to a gastro-enterologist despite having IBS symptoms for several years.
I passed on lots of PAS info and info from other UK health documents to GPs.
I mentioned the possibility of B12 deficiency to most of the specialists I saw (only one of the neurologists thought it might be a possibility and even he didn't diagnose it as my serum b12 levels were normal).
I had some difficult experiences with health professionals and stayed far too long at a GP practice where they were not listening to me.
I eventually realised that this GP practice were not going to treat me and I made a decision to source B12 treatment privately.
I tried taking high dose oral B12 tablets or sprays (1000mcg or higher) but these did very little for me. Only B12 injections keep my symptoms under control.
It took many weeks even months to start to see improvements which I was not surprised by as I had been left undiagnosed and untreated for many years.
I kept a symptoms diary to track changes over time.
I improved for at least 8 years running from when I started treatment and wished I'd made the decision to source B12 treatment before...I could have avoided years of suffering.
I also moved GP practices more than once as I was still trying to get NHS treatment and did eventually find a GP who listened but still can't get enough B12 from NHS.
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No loading doses allowed 
Has anyone found it helpful to see an endocrinologist?
Supplements alongside B12
