Hi all hope your all doing well, been back to my gp and he keeps insisting I have ME. The symptoms are similar but this is a new illness that they've categorized is it not? Sort of could apply to a lot of things but is this a way to move you on? Told him I was SI but he said that would give anyone a boost. Has ordered another serum b12 even though he said it was within range last time 3 months ago, don't know if that's to confirm what I'm saying about SI as don't feel he believes me fully about things in general. Has anyone else had this diagnosis , feels like another IBS kind of diagnosis ( catch all diagnosis that doesn't get you anywhere and stops all lines of further investigation)
ME/CFS: Hi all hope your all doing well... - Pernicious Anaemi...
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I feel its kind of like Fibromyalgia, except that in the case of ME/CFS I do suspect there is a disease/infection behind ME/CFS, which may be related to the virus called "mono". Theres an interesting documentary on it I watched that I'll try to find again. But the problem is virtually all the ME/CFS symptoms fit pretty easily into the symptoms of a B12 deficiency. Did your doctor mention how he's excluding the possibility of a B12 deficiency (or the damage from it) causing the symptoms? It seems pretty dubious to me.
But like Fibro, ME/CFS has no confirmed cause (yet) and no cure, whereas B12 deficiency has known causes and treatments. If someone becomes B12 deficient its going to be nearly impossible to tell some of those symptoms apart from ME/CFS, if someone had both conditions . I dont think an ME/CFS diagnosis adds anything worthwhile to the table when someone has a confirmed B12 deficiency.
Much more likely is the common issue of doctors being unable to believe a B12 deficiency could cause such long term fatigue despite injections... probably needs to spend more time on this forum which would soon show him its one of the most common long-term issues that those with PA contend with.
m.youtube.com/watch?v=YH1wn...
• in reply toTechnoid
Thank you I'll watch that
• in reply toTechnoid
Oh hang on I've watched that about ten years ago, thinking I had it but didn't relate to the joint pain. Doctors definitely didn't recognise it back then , think that's why thought it wasn't a real illness
• in reply to
So weird, definitely remember the opening credits with the carousel and the title but the dates are recent. Definitely watched something similar maybe? Was definitely more than 8 years ago before my children. Weird
• in reply toTechnoid
I never got a diagnosis of PA when I went to him back in October because my serum was in 500s. It didn't seem like an idea he wanted to entertain it was just ME and I couldn't really argue the case after the serum was normal. They say They don't measure active. I've had loads of injections now so I guess I'll never know. I just believed it was PA after a chance meeting with a Pa sufferer who told me I sounded exactly like her before diagnosis. Has some injections and felt so much better as I was literally so dizzy, ill,dementia like symptoms very frightening and they stopped after injection. Not seeing as much as an impact now but everyone here tells me that's common to get worse before you get better
Technoid• in reply to
If you had a strong reaction to injections thats a good indication you were B12 deficient. If a healthy person gets a shot of B12, its not going to do anything. If your deficiency was serious and/or longstanding, symptoms often get worse initially, then stabilize and improve slowly. But its slow going and takes a lot of patience. Of course need to support healing by looking at improving diet, rest, sleep, supplement if necessary, social supports, and some movement and very mild exercise to get blood going to where its needed and retain and improve function.
• in reply toTechnoid
Thankyou, just spoken to someone on here that has both conditions. Another autoimmune illness to add to the list, that's 3 now! (2 dianosed, PA undiagnosed)
Nackapan• in reply to
Mma is often used by specialists to diagnose functional b12 deficiency. I do not have a diagnosis either.
For me my serum b12 first ever testt was low 106 (200.900)
Medics convinced something else going on to give such severe symptoms.
To date nothing else found and im still making improvements on regular b12 injections.
• in reply toNackapan
Thanks maybe I'll try and ask for that test? Or get it done myself? You had that test result and they still didn't diagnose you, that's pretty bad
Nackapan• in reply to
I didn't need an a Mma test as serum b12 very low .Used mainly if your b12 test is 'within range 'but symptomatic
So yes a diagnosis of a b12 deficiency
The cause not identified.
It's obviously an absorption problem.
Still not enough known .
IFAB test shoukd be done before b12 Injections start .
Or after a gap of ? 2 weeks ( different opinions of that )
Mma if serum b12 in range specialists will use
I didn't have one 😕
IFAB picks up 50% of those with PA but worth having to maybe rule it in but it dorsnt rule it out as several people have had a few tests before its positive .
There is no gold standard test
• in reply toNackapan
Had negative IFAB test I think before I started getting injections
Nackapan• in reply to
Glad done .Unusual or NHS to do it with 'in range' b12
Also to start injections.
Main thing is your positive response to b12 injections and finding a regime that suits you.
Just keep tabs on folate iron ferritin vit D
With a high influx of b12 puts other things put of whack.
Or one absorbtion problem is accompanied by others.
.
• in reply toNackapan
I asked for it and it was done with the first b12 because the woman who told me about Pa told me to ask for that. I was in such a bad state at the time they probably just thought do it and get her out of here as I could hardly speak at the time, stuttering and just in a daze
I was diagnosed with ME in 1988. I knew that I needed B12 shots despite the blood test results, but it wasn't until 2014 that I finally gave up trying to get them on the NHS and started self-injecting. The improvement in my condition was remarkable, and I have continued.
So great to hear that you took matters into your own hands, and have improved . 👍👍
Hi Rachael, I might get heat from saying this but I feel like CFS/ME is Bullshit and often when no one knows why youre so sick. I just went Stanford CFS clinic in Atherton, California biggest waste of mine and my familys time and money took 1 year to get appointment for 40mins and no answers. But anyway I wanted tell you that I was reading that Addisons Disease and Pernicious Anemia sometimes go hand and hand. And Addisons disease has all symptoms of Dysautonomia and CFS. Maybe look into Addisons disease. I still dont know whats the hell wrong with me but Im over the medical field and I was an RN before gettng sick.Hope you find help
Thomas
You are right Thomas 707 . If it’s B12 deficiency , one is on one’s own -/ Well not as long as there’s a Pernicious Anaemia Society and this forum 👍
• in reply toThomas707
Yes I know what you mean, can't really accept things that have no cause or cure. It's all very frustrating isn't it. Yes I'm getting sick of trying to get help in that way now just have to help ourselves. Will look into Addison thankyou
My daughter was labelled with fibromyalgia ME / chronic fatigue Tested for ;
Addisons
Lupus
Arthritis
Caudal equina
Brain mris
Spine mris
Lumber puncture
All before trsting b12 and folatd yrsrs later .
I believe thr room of her problem.
Final diagnosis:
Vif b12 deficiency with macrocytic anaemia
Folatd deficiency
Vit D deficiency
Very low ferritin.
Ehlers Danlos. HEDS
And POTS
A nasty combination .
After 15-20 years now on medication .
After trials of diet and appropriate suppline exercise.
Also s wheelchair user.
Hef life has turned around.
After loading s full time senior English teaching post.
Went on to do a part time masters degree.
Volunteer work now able yk work 8 hours a week.
Waiting fir appointments have so much hanging on them.
I waited 18 months to see a neuro ophthalmologist.
Like you a total waste of time.
Even told could be psychological/ psychosomatic
Ect.
I mumbled that makes text disappear as I write??
My eyes are deemed healthy.
Must be brain to eye signals??
All very disappointed.
My daughter had years of it.
It eas only when I blocked her discharge ftom hospital more tests done and a general medical consultant took sn interest.
Keep going with investigations
I was also given the diagnosis of chronic fatigue (ME) then later on Fibromyalgia and now some lunatic has labeled me with functional neurological disorder ! ! ! All of which is very frustrating seeing that I have an array of various autoimmune conditions.
It is common sense your B12 will be high if your self injecting so why is your Gp retesting when it's pointless ? Keep an open mind and do what makes you feel better. I would rather they admitted they didn't know the cause rather than take a guess and label us.
Did he/she exclued your B12 symptoms one by one because I can assure you they are very different fron ME of which I do believe I had due to contracting many viruses when I were younger. I would question this Drs actions.
I agree with Technoid's explanation.
There is an excellent book by Dr Sarah Myhill who has devoted her life to helping patients with ME/ CFS “ Chronic Fatigue Syndrome and Myalgic Encephalitis “
It’s mitochondria , not Hypochondria “
I read all the books on ME and spent a lot of money going to health farms and private clinics. I attended the London Royal Homeopathic Hospital and underwent grueling diets for candida.
I did it all. 🥲
You have really been through the mill Jillymo A less determined person than you would have given up . . I hope that life is better for you now . Thank goodness for this forum .
• in reply toJillymo
No B12 wasn't up for discussion first time I went in, just did a blood test as I was insistent, fresh off the back of meeting someone with PA that was convinced that's what I had. His time, B12 test again, didn't tell me just saw it on the bloods form. I'm guessing it's to confirm what I say is true, that I have been SI but he won't even consider pA as a possibility.That's so frustrating for you, so they say you've got all 3 of just keep changing the diagnosis?
Jillymo• in reply to
I was given a loading dose then prescribed 3 monthly injections but still having symptoms i asked my Gp to prescribe 2 monthly. She was insistent she was unable to prescribe more despite my ongoing symptoms.
I were sent to see a neurologist ( quack ) but had to wait months to be seen. In that waiting time had I not have self injected serious damage would have occured. The neurologist wouldn't even consider B12 or listen to my symptoms despite my having autoimmune disease's. He had made his mind up before I had even walked in the door what he was going to label me with. ( Swine of a man )
It is a constant battle. I have been injecting now for 2 1/2 years and feel better for it. I am still waiting to be seen in gastrology.
I know exactly how deflated you must feel.
• in reply toJillymo
Jilly I do hope you get seen to at gastro, I've been stalled now on that too. I think women are seen as 'melodramatic' and 'emotional' and therefore not taken seriously by some medical types. Certainly had that experience when it took 10 years to get diagnosed with endometriosis (had to pay private in the end). Unfortunately a lot of what we say and symptoms we have are always put down to 'emotions' before being considered as anything medical. Sure the men experience a good deal of this too with getting a diagnosis for this particular illness.
Jillymo• in reply to
I cant help but wonder if ME, Fibromyalgia and FND are the same thing. I do have a complex autoimmune history but not one of these so called medics has the logic to join up the dots. The neurologist added insult to injury with his unfounded diagnosis of FND and I now have a case against him.
I have been ill since my late teens and now 72 and still fighting. ! suspected lupus ( 2 positive and one boarderline result ). I were later diagnosed with thyroid issues. Then came a diagnosis of sjogrens and things started to unfold with regard a diagnosis.
I have a serious blood disorder ( antiphospholipid syndrome ). My haematologist presvribed me folic acid a few years back which I think masked my declining B12. The numbness, stinging and burning in my limbs and dizziness was so bad I could hardly get about. My balance and bladder control had gone and brainfog which I had put down to fibromyalgia all improved with B12 injections.
Listen to your body and do whats right for you and keep a diary of symptoms that have improved.
• in reply toJillymo
It seems autoimmune illnesses follo on from eachother, once one thing goes wrong in the body, the floodgates are open for everything else to go wrong. Sorry to hear all that Jolly will pray for some strength for you in your angling struggles
Jillymo• in reply to
P.s Remember to insist on copies of all tests for your records. 😘
I'm too tired (no pun intended!) to address most of this properly but I'll try. Most but not all ME is usually onset after an infection. For me that was glandular fever. No ME isn't b/s. Yes symptoms can be similar to b12 deficiency I have both and b12 SI helps a lot but isn't a magic cure for everything I have going on.
ME/CFS is classed medically as a neurological disorder. But there is little funding for research and little known about it really. Sadly also often diagnosed as a catch all and lots of stigma attached still from people thinking it's all in your head as it's an invisible disability. I tend to personally agree with the findings on links to gut/mitochondria issues and the thinking it should be classified as an autoimmune disorder (it isn't currently).
There is an ME society which is super helpful for further info, they have free booklets on many helpful subjects related to living with it.
There's also no point in getting your b12 levels tested while you're also SI as your levels will be off the charts high.
Before SI my b12 was low (borderline deficiency) while I was taking very high doses of tablet form b12 and repeated tests didn't improve over a year before I got seen by a rheumatologist who said I clearly had a b12 deficiency and inability to absorb it so put me on injections. Haematologist agreed. I privately topped up every month between NHS injections and started SI more frequently during the pandemic.
Also don't forget GPs are just that. GENERAL practitioners. They're not specialists and rarely know much about ME or B12 deficiency. In my experience you have to do your own research and demand referrals to specialists for further investigation. Don't allow them to fob you off.. you are entitled to be referred just obviously be prepared to then wait to be seen by whoever. I know you want a gastro referral. If gp won't then make a complaint in writing/email to the surgery.
Hope that helps x
Thank you for using your energy to write what I’d like to have done, were I not so tired. I wish you better times.
One thing to add for OP’s attention is that there has been at least one study where people diagnosed with CFS/ME who injected B12 and also took folate every day improved their CFS functionality scores considerably more than people who didn’t. I can’t remember any details about it to help you find it, but Cort Johnson of Healthrising and Phoenixrising sites posts extremely helpful breakdowns of recent research and I’m sure I read about it on one of those sites.
Oh and EVERYTHING I know about B12 and PA I learnt from this group forum which has been invaluable and I'm eternally grateful 🙏 .
back in the late 2000’s I was diagnosed with chronic fatigue/post viral. Now I have confirmation of PA. Crazy thing is that I was folate deficient back then with bottom end of the range b12. As shown in blood tests. Hindsight from this points to a lifetime PA undiagnosed.
I was diagnosed with MS 11 years ago. The symptoms are similar to ME, Fibromyalgia AND PA. Who knows what's going on?! I'm not sure medics do 
Another documentary on ME. Yes I think very little is understood about it. I don't think ME is an imaginary condition but I do worry about those given an ME diagnosis because of normal B12 results who actually have a B12 deficiency and thereby remain untreated for the deficiency. And of course it possible someone might have both but I think it would be incredibly difficult to differentiate the two if the B12 deficiency was severe and untreated for years. Even frequent B12 will not cure some symptoms completely and long-standing fatigue I think is one of the most common unresolved complaints for many PA sufferers even when treatment is adequate.
m.youtube.com/watch?v=iz6nT...
• in reply toTechnoid
think I'm inclined to agree with you. I definitely have had periods of being bedbound over last 20 years and periods of being better with seemingly no rhyme or reason e.g. Pregnancy was the most active and healthy feeling I've ever had. In a particular bad bout now with b12 definitely being a factor as I wouldn't have improved in the beginning as you say. Coming round to the prospect it's probably a myriad of things go ing on at once. Just got to get one thing at a time sorted. Continue with b12 an d just keep ch ipping away. Stomach issues massively improved since taking hcl and pepsin so that has been amazing. The worse thing is the brain going,used to the body but the brain is my main concern. have to get back to 100% can't accept that I can't read a book anymore! De mentia kind of symptoms can't be lived with.Thanks for the videos
Regland 2015 "Response to vitamin B12 and folic acid in myalgic encephalomyelitis and fibromyalgia"
Chicken or egg situation? Does ME/CFS cause B12 issues or is B12 deficiency a risk factor for ME/CFS.
I have both ME/CFS and B12 Deficiency
ME/CFS followed a particularly nasty head cold with vomiting (not flu - I had that 4 years previously). 14 years later glandular fever made symptoms worse and 10 years after that a very, very mild case of Omicrom also made ME/CFS worse again. I do believe Long Covid and ME/CFS are the same condition.
I suspect I have had some sort of B12 issue all my life - minor symptoms affecting mouth and bowel function in childhood. B12 blood serum low 15 years ago. Bone marrow biopsy following MGUS (pre-myeloma) confirmed B12 deficiency 2 years ago. I now self inject from German supplies in addition to grudgingly given 6-weekly NHS injections to try to avoid development of blood cancers. Interestingly Long Covid research is often finding B12 issues.
Re Long Covid I often think of this story:
cambridgeindependent.co.uk/...
• in reply toTechnoid
Your a wealth of info, relate to that article so much, tell me my iron is normal but I can see my ferritin was at 20 within range but cut off is 15. Chronically low iron, been supplementing for 3 months and only raised it by 10 to 30. Always low no matter what I eat
Hi - I had a diagnosis of Chronic Fatigue Syndrome for a long time before the B12 deficiency was discovered. The deficiency did not show up in my blood work as anemia - except for one time and my doctor assumed it was a lab error. It was only when I saw a psych for the extreme cognitive issues that the B12 issue was found - he tested for Active B12 instead of Serum B12. I understand that Serum only shows what is in the blood, whereas active shows what the body can actually use. Most docs don't know the difference (or don't care). I still don't know why my levels go down - I had a full gastro check and they did not find gastritis or celiac, etc. So I just keep injecting. I did get relief at a clinic for traditional Chinese medicine that specializes in ME/CFS. I am in Germany. They took all of it seriously including the pain. TCM docs here are also MDs. The doc at the clinic suggested I stick a regimen of B-complex injections to avoid further relapses and neuro damage. I had a lot of deficiences, to include B9 which can cause similar problems. Not sure if this helps, but hoping you find some lasting relief. Take good care.
Please whatever you do do not agree to a diagnosis of CFS/ME. It has prevented me from having any but the most basic testing for decades. I started taking B vitamins at the very start of my illness since my symptoms matched with deficiencies. I had dramatic improvements then worsening and could not figure it out. Now all these decades later I realise that I was having the "worse before better" thing. Many times I told GP's that their B12 tests were inaccurate as I was supplementing but they ignored me. The folate in the supps I was taking prevented the macrocytic anemia. It was unmasked when I began Elliot Overton's B1 (thiamine) protocol. This happened just before Christmas and every medical person was on holidays while I was, I believe, quite literally dying. I began sublingual b12 lozenges and am already improving. First injection on Tuesday. So many additional symptoms over the years, it was clear I was deteriorating and new problems but they don't blink when you get multiple autoimmune diagnoses because "that happens". Several bad neurological problems for years so now not sure how much I can improve. Try B12, it will do you no harm and may save you from years of hell on earth. Worst that can happen is it doesn't work. Then I would try Elliot Overton's vitamin B1 protocol. I strongly suggest ruling them out first, since treatment for CFS/ME is still in the dark ages - sleep meds, antidepressants etc. In Australia at least, doctors basically abandon CFS patients to their fate.
• in reply to2Thess2
Thankyou I am self injecting B12 as when i couldnt get one for 3 weeks I deteriorated again very quickly, slowing climbing back up after being without injections for 3 weeks. Sublinguals do absolutely nothing for me even at extremely high doses
I've not had any diagnosis but it sounds like a classic case of 'The dead cat tactic'; shift the focus
I had ME about thirty years ago at a time of horrendous stress in my life.
I couldn’t go downstairs in my home for fear of not getting up again to get back into bed. It was awful but I had a GP at that time who had a family member suffering ME. At least I wasn’t told it was all in my head like so many others. I eventually managed to return to work but was never fully recovered. I wasn’t me any more! Twenty years later at another time of unbearable stress I was found to have PA.
Also at that time my diagnosis of Osteoarthritis was found to be incorrect, I had Psoriatic Arthritis.
There are other members of my family with Pernicious Anaemia and I believe it does run in families. I also believe that intolerable stress levels hasten the onset of AI disease.
Medics like to put labels on patients and I now feel I could visit my GP with my head hanging off, and be told it was due to arthritis. I don’t have any answers on how to be viewed differently, I wish I did x
Hi Twaddletop
Nothing to add but just wanted to say you are not alone.
I too was diagnosed with B12 deficiency problems around 30 years ago after horrendous stress for which I had to take PPIs due to gastric flare ups. Then, about 14 years ago I was diagnosed with CFS after an endocrinologist said I had had extensive blood tests which ruled out other things so it was put down to CFS.
All the best x
Thank you for your reply Moggy, I appreciate it. It’s going from bad to worse I’m afraid.
I’ve been suffering bouts of blurred vision for a few weeks. I got up this morning and my sight was like I was looking through a filthy window. I have to admit I freaked out. I started on a new biologic drug for PsA around seven weeks ago called Abatacept. It’s a once a week injection. Penny dropped this morning, what’s a contraindication of this drug? You guessed it blurred vision 🥴
My rheumatologist is still out sick, my GP told me she knows me well enough to know I’ll sort myself out. Stress levels are building and I’m wondering what next 😞
Hi,
You could always ask for your urine to be sent to a lab. CFS have metabolites that are only found in the urine of sufferers. This also doesn't rule out your B12 needs sorting. You can have both:
sciencedirect.com/science/a...
CFS also has low cortisol in urine too, and is thought to be a metabolic cause though most likely a multi-factor causality. There is unlikely to be a panacea for it, but a multi pronged approach that takes time.
Although sounds like your GP is a pain in the backside as even the NICE guidelines state that where there are neurological symptoms B12 should be given on alternate days until there is no further improvement. It can take more than one generation of doctors for the message to get through.
My husband has both CFS and IBS with migraine and some functional neurological symptoms. Look into other supplements to add to your regime. I've seen high dose thiamine help some, there are forms of magnesium - magnesium l-threonate actually passes over the blood brain barrier and my husband find both of these help. P5P also helps him - a bioactive form of B6. They can help if you have neurological symptoms too.
As vitamin B12 deficiency is auto immune then you may benefit from a low histamine diet. There will be other calls on your B12 too, especially if you have asthma or even a history of asthma. GP's are, on the whole, useless at this kind of stuff and yet they stand as gate keepers preventing referrals in their ignorance.
Hang in there and keep SI. You know what's right for you.
xxx
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