I was recently newly categorised as extremely vulnerable (potentially for needing longer term steroid treatment for allergic reactions rather than my recently diagnosed PA?). Unfortunately I have just caught Covid and gone downhill fast. I have received my obligatory NHS phone call for treatment assessment and told that I dont qualify!! - the response of the NHS would be really funny if their procedures and processes weren't so unfathomable and distressing. However when discussing my medical conditions with the Covid Treatment Team I was mystified as to why PA is of no interest to them? - especially as a study at Addenbrookes indicated that VitD and VitB12 are essential to recovery from Covid.
Does anyone know why those of us diagnosed with Pernicious Anaemia are not considered extremely vulnerable and therefore do not qualify for treatment for Covid under the following NHS headings:
1. A condition affecting your immune system or a condition or treatment that makes you more likely to get infections .
2. Certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)
Surely PA can be both an autoimmune and an inflamatory condition? PA also seems to have left me unable to fight any type of infection without medical intervention (my diagnosis took in excess of 20 years so this may be a factor), I wonder if others with PA have this problem too?
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CroquetQueen
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Hi CroquetQueen. I caught covid in March 2020 and almost died. I have been left with diabetes type 1 (No family history) vertigo, confusional migraines that have left me in DKA because I could neither talk nor understand why I needed insulin at that point and I had to be hospitalised again. They didn’t know what was happening to me. I still have these. I have also painful ears, extreme fatigue and I could go on. All due to Covid. While I was in hospital for the 3rd time, one of the doctors told me that the reason I had had it so badly was because I have PA. I tried to explain to my GP that they had told me I was vulnerable but she would have none of it. She said I wasn’t on the list. Oh i also have asthma and an under active thyroid…autoimmune diseases…but no…I’m not vulnerable. I had my booster shot a couple of weeks ago…and I was sooo ill. I almost ended up in hospital again because my keystones went up to 4.3. Thankfully ..and no thanks to the gp …I managed to get them down again. I totally understand where you are coming from.
So sorry to hear about what has happened to you and thank you for sharing the details, its so helpful to hear about other PA patient's experiences. The Covid Treatment Team and their pharmacist kept repeating the same line to me as your GP did - PA is not on the list so doesn't qualify for early anti viral treatment, no amount of persuasion will change their minds. I am now completely mystified as to why I was categorised a couple of weeks ago as extremely vulnerable, there is no information to explain why, or why my current medical conditions don't qualify me for treatment. The Covid treatment had to be given within 5 days of symptoms starting - that opportunity was taken away from me by their pharmacist. Only two days into Covid and very ill so who knows what this will cost the NHS and me in terms of future support and suffering - a lot more than 5 days of tablets I suspect.
There are other interesting parallels between us. Yesterday I suffered a headache like no other accompanied by delusions, it really scared me. I too am asthmatic. Each time I receive my Covid injections I become really ill and take a huge backward step with my PA. For this reason I was slow to get around to booking my 4th injection and as a result I'm paying a high price.
I think you make a really interesting point about being told you don't qualify when PA is auto immune, can involve inflammation and can make you prone to infection.
Maybe PAS would be interested in finding out from HRA why you don't qualify or at least could suggest some info you could pass on to the Covid Treatment Team.
Thank you for your concern. Yes I am a PAS member and following your suggestion I have written to them by email this morning (was too ill with Covid yesterday to process anything coherant!). Thank you for the suggestion, we will see if they reply.
Unfortunately the NHS ensure that you have no way back in to speak with the Covid Treatment Team again. They call on a you on a Private Number, however, if they decide you do not need treatment just yet, but are eligible for self referal, they will give you some sort of contact details. In my case a chat with the pharmacist removed that opportunity too, as neither my type of steroid treatment nor PA are on the list qualifying me for early treatment (anti viral etc) and therefore as extremely vulnerable - very confusing as the NHS had just categorised me as such but do not explain why.
I will try contacting Tracey Witty - thank you for her name - when I can muster some energy later
I will tackle my MP, Grant Shapps too, when I feel up to it. Another great suggestion thank you, but from experience I don't hold out too much hope there!!.
I have read news stories where people who are unhappy with treatment for B12 deficiency have gone public but haven't read any news stories about people with PA not being eligible for covid treatment.
If you felt really strongly it might be an option to go to the Press/other media.
I do think that going public is likely to permanently affect GP/patient relationship or may get a patient labelled as being awkward but it can sometimes be effective.
Newspaper article about patient struggling to get B12 treatment in Scotland
You seem to have the enthusium that I once had and hopefully may one day return to me. At another time, or in another life I would have loved to bring our plight into the the public domain but hopefully someone else will take up the challenge.
Sadly I have some serious problems to overcome before I can be of use to anyone. I have a potential allergy to B12/Cobalt - you may recall commenting on my first post a couple of months ago, please see Technoid's comments and my reply below. I didnt include this in the question I posed above because I didn't want to detract from the subject matter but you can only imagine how hard the refusal and lack of covid treatment has hit me due to the predicament I find myself in.
I had little to respond with regarding my previous post until recently and I'm sorry that I havent had the energy to reply to your very helpful suggestions, all of which I had been slowly working through. I will try to post an update regarding the allergy in the coming days for someone else to refer to in future in case the outcome of my contracting Covid gets worse.
If you have the energy you could discuss this with your MP or perhaps someone could discuss on your behalf with MP. You would probably need to give someone else your signed written permission to act on your behalf.
MPs website should have a phone number or online form to contact case workers and list of dates for advice surgeries.
PAS and B12 Deficiency Info may also be interested in your story.
Don't worry about responding to any posts.
I think we all know what it's like to struggle to find the energy and think with a head that feels it's full of cotton wool.
Great detective work - I did't spot that link when the NHS emailed me this on Tuesday as an "Extremely Vulnerable Person". Perhaps my MP will get a message today from me if I can think clearly - it always takes him several weeks to reply though so will be too late for me this time (treatment has to commence within 5 days to be effective), but it may help someone else in my predicament (potentially allergic to B12/Cobalt) or even me in times to come - although I will be going out of my way to avoid contracting this again!!
We're all getting over Covid here (for the second time in 6 months!) My daughter has cystic fibrosis and ended up very ill in hospital, and I must admit, I thought I would be joining her as I was so poorly. It does seem daft that we aren't considered as extremely vulnerable with P.A. Personally, I find my immune system tries to kill me every time I catch something. Even a cold wipes me out for weeks.
This incarnation of Covid seems to be bad on the chest for a lot of people. I'm a month in and still getting breathless doing things that I could normally do without a problem. Even my husband, who has no underlying conditions has found it tough going. For a few weeks, we were waking each other up at night with the rattling, wheezing and coughing.
Thank you for your comments and so very sorry to hear how you are all still suffering. Where PA is concerned it really is the forgotten disease...... but hopefully with determination and the right pressure on the right people we can slow down or stop unnecessary future suffering, especially from Covid
Sorry to hear you have been so unwell. I caught Covid in July, and I managed to speak to the assessment team (I think they were based at Guys) to ask them if I should be on the treatment (I have an autoimmune disease, plus functional B12 deficiency, and have sleep apnoea (on CPAP). They essentially said no - and when I questioned why (as my autoimmune disease is very similar to Rheumatoid Arthritis), they said that it wasn’t the disease itself (RA) that made people vulnerable, it was whether they were on ‘Disease Modifying’ drugs, that essentially switch your immune system off and so make you very vulnerable to things like Covid, as you have no defence against it. I am not on those, so was not considered vulnerable.
Yes, I was told much the same. Initially I was advised that I was very vulnerable, but downgraded as not taking disease modifying medication. When I did get it (early this year and relatively mildly), I took extra B12 and methylfolate (on sublingual/oral) and NAC plus quercetin (as I use it already) and the usual vit C, zinc, magnesium, vit E etc and although it did cause some longer lasting changes these are slowly resolving. If the virus can affect one carbon metabolism, more B12 seems like it may be necessary for many. Cheers
Thank you for the super list above of supplements you used to help you through Covid. As I have been dosing up on much the same thing it gives me some comfort.
You clearly discovered the reason why PA patients are not considered extremely vulnerable. I had suspected as much, but unfortunately this was not explained to me when the Covid Treatment Team called me as an "Extremely Vulnerable Person" despite me questioning them. Thank you for confirming this and making us all aware.
Sorry to hear that you are suffering. COVID does seem to affect people in very different ways.
In relation to PA and autoimmune conditions and COVID
a) not all auto-immune disorders mean you are more susceptible to COVID. In general the auto-immune disorders that involve the use of immuno suppressants (eg rheumatoid arthritis) are the people that are categorised as being vulnerable - more, I think because they are on immuno suppressants than because they have an auto-immune condition.
b) Diabetes is one condition that is known to make patients more vulnerable - not sure if the reasons are known
c) if a PA patient is being treated then in theory they shouldn't be B12 deficient. Please note 'in theory'. Treatment for PA, and auto-immune thyroid conditions doesn't involve the use of immuno suppressants so neither condition is considered to be in the class of conditions making patients more susceptible.
Thank you! I know you are correct (as always) but I still wish there was a little more compassion and help available for how people actual present, rather than just the theory - pretty much like for everything to do with PA and B12d.
I hope you are OK and as well as possible. Best wishes!
Thank you for your kind thoughts and a clear and detailed reply. Dilly_blue and Bookish have made the same or similar points confirming the reasons why those with PA are not thought to be "Extremely Vulnerable" to Covid; this is much appreciated.
I was further interested in this subject as, in my case, I am suspected of being severely allergic to B12/cobalt so have had to abandon my usual EOD treatment plan and as a result I am probably not getting enough B12 (0.5ml once weekly with heavy antihistamine support). I of course told the treatment team this - please see detailed discussion with Technoid below. Please note that I did not mention my potential allergy in my question above as I did not wish to detract from the issue at hand.
I had vainly hoped that the NHS treatment team would have considered, in someone not receiving enough treatment for PA (or no treatment at all in some cases), that B12 deficiency will interrupt the intricate processes involved in immunity, weakening the body's defense system against disease. This would have qualified me under the NHS category 1. above:
"A condition affecting your immune system or a condition or treatment that makes you more likely to get infections" .
The second puzzle, and not related to the question I posed above, relates to my being categorised as extremely vulnerable only two weeks ago, following the heavy treatment with steroids I had to endure to get rid of hives (assumed to be the reason as there have been no other medical changes). Given that high doses of steroids are known to reduce immunity to illness (although they can also reduce inflamation, as with my hives) I am at a loss to understand why I was told that I didn't qualify for treatment and remain mystified as to why the NHS bothered to recategorise me in the first place. I feel as though they are playing Russian roulette with my health and that their actions appear to be a sad waste of resources.
Sleepybunny above, has suggested I raise this situation with my MP and when I find some energy I plan to do so, even though it will be too late to receive treatment for myself (has to be administed within 5 days to be effective). It may be helpful ultimately for those who are newly diagnosed with no B12 treatment to date or in very rare situations like mine
I'm still covid free at this minute but fear it significantly - and I'm lucky not to have health anxiety.
I'm exactly the same as you and get everything. I went to an outdoor party in the summer, including several vulnerable people, including those in the "extremely vulnerable" group, I didn't get close to anyone and yet I was the only one to get ill afterwards (someone there was "getting over a cold").
So much so I asked for a referral to Addenbrooke's Immunology department and had a number of tests done. Two showed up significant things but the consultant has just said I should have my childhood vaccinations again (for the 3rd and in some cases 4th time) and dismissed me!
I've been asking the questions of, in theory, the right people, to no avail. My friends, including 3 who do get help, are baffled as to why I'm not eligible for help and have been very encouraging as they know they are likely to "kill me off" if they see me but do want us to have fun together sometimes. I'm self employed and I can't afford to be ill: even "a cold" can turn into weeks of infections, etc.
I'd love to know if there are some reasons/solutions.
Thank you for taking the time to reply, sorry for my slow response, I have been so very ill with this. I sympathise with your thoughts, we are self employed too. If you read the discussion between Technoid and myself below you will see that I have a further, more serious problem. I too am being referred to Addenbrookes - medicine allergy department - but sincerely hope they dont dismiss me as they have you; however, nothing would suprise me!!
I think you have done wonderfully well to reply to everyone in such detail and I really appreciate your efforts. Goodness knows how you've managed! I can't believe how bad it must be to be allergic to the B12/cobalt and so not be able to get the treatment that is so essential. Addenbrooke's Gastroenterology department have been superb for me so I have every hope in you getting good care there - they are brilliant.
Thank you, I am quietly hoping so too as my oldest daughter was under their food allergy department for 15 years (she has extensive life threatening food allergies - now 33), I have a food allergy too diagnosed by them 12 years ago - Dr Annette Wagner and Dr Nasser were brilliant, but Annette has now retired. I've had so many knock backs this year including an admin error cancelling an urgent appointment Dr Nasser wanted me to attend early December- now I have to wait until March 2023.
I will leave nothing to chance and go prepared to Addenbrookes with the scant few medical papers I've been able to lay my hands on, to make sure I'm correctly assessed and then treated (fingers crossed) - they are planning skin prick tests but I know these not to be sensitive enough to detect Cobalt allergy - intradermal or skin patch testing over 48 hours will almost certainly be needed if its Cobalt. If not B12 or Cobalt, I will be singing from the rooftops and you will all hear about it!!! (although I then have the journey to find out what it was that had such a terribl eeffect on me. I still plan to update my original feed on "Suspected Allergy to Cobalt and B12" in case it helps someone else withPA who feels as desperate as I did two months ago.
For the time being I'm determined to overcome Covid - I refuse to be beaten just yet despite the NHS Covid Treatment Team's best efforts.
My goodness, you really have been through it, haven't you? Poor soul. Makes me feel like I've had it easy!
As good (usually brilliant) as their Drs are, Addenbrooke's appointments booking system is notoriously atrocious! I live well over an hour away and it's a nightmare going in, not knowing whether your appointment will happen or not! You and I are not alone!
It seems a slightly crazy thing to say but "at least" with your background of allergies they will/should be more likely to take you seriously. I so hope so.
CroquetQueen I recall last time you posted that your B12 injections were stopped due to allergic reactions, any progress on this, re: desensitization etc? Since you had untreated PA for decades according to your bio you will likely need regular B12 injections to keep well or at least stable. If you're not getting injections, or not frequently enough, you will be B12 deficient with all the serious and progressively destructive effects on the body and mind which that condition implies.
"Vitamin B12 plays a crucial role in the proper functioning of immune system. Methionine synthase, which uses methylcobalamin as a cofactor, is essential for the synthesis of purines and pyrimidines in all cells, including fast-dividing immune cells. Several studies (both in man and on animal models) have reported the exact function of vitamin B12 in the immune response.
B12 deficiency leads to a low number of lymphocytes and impairs the activity of NK (Natural Killer) cells (the most important for destroying cancer cells)"
You have a good memory and are very observant!! Yes I have a serious problem as I appear to be allergic to B12/Cobalt so my treatment plan EOD has had to be abandoned - I was undiagnosed for decades as you have recorded, until early this year when, after a ridiculous fight to be diagnosed, despite unquestionable blood test results (B12 183 ng/l & IFA 100u/ml!!), I received standard treatment not suitable for those with neurological symptoms. After another fight and finding some specialist support I went onto a programme of EOD with the intention after several months to decrease the dose very slowly depending on clinical symptoms. Some of this was supported by the NHS (the rest SI) and, thank the lord, I suffered my severe allergic reaction after an NHS B12 dose by IM - less explaining to do!!.
I will update my previous posting regarding allergy to B12/Cobalt because my situation is extremely rare and the hard journey I have been on (and still on!) is important to record somewhere. For the purpose of this discussion I had to go without B12 for a month then reintroduce fortnightly with a 0.5ml dose and heavy support from antihistamines. My GP with help from my specialist has increased this to once a week but the specialist would prefer twice if hives can be prevented. Sadly hives or anaphylaxsis will strike without warning so I take a huge risk every time I inject and have remained on 0.5ml once a week without having yet triggered the hives again. Help is hopefully at hand from Addenbrookes Hospital Cambridge, but not until March 2023!!
I of course told the Covid treatment team all of the above and that I am getting far less B12 than I need and am potentially deficient but they are trained to go by the book and the rules set out for them. I know that due to my allergic reaction and reduced treatment I am at high risk of a very poor outcome from contracting Covid - the NHS doesn't seem to understand much about B12 and PA and even if it did, the rules are there to be followed....
Something off at a tangent here - I use a basic saline nasal spray (Sterimar) every day, and have done for a couple of years (I have sleep apnoea, use a CPAP machine, and find that saline spray helps with my breathing over night).
My whole family (husband and three children) caught covid in March, and I didn’t, yet I was obviously looking after them, and in close contact.
I wondered why, did some googling and came across some research articles saying that use of a saline nasal spray can reduce the impact of a covid infection (it was trialled, participants used a saline nasal spray four times a day from the first day they tested positive for Covid (controls didn’t use a nasal spray), and results showed that those that used a nasal spray tested negative after five days, and hadn’t had so many symptoms like sneezing (ie viral load was much lower, and less likelihood of passing it on (sneezing is a major transmission route). Controls had a higher viral load, and continued to test positive beyond five days (can’t remember how long for).
I suppose in some ways it is like washing your hands regularly - I think up the top of the nasal passages is where the virus lodges and multiplies (hence that is the main testing site). Rinsing it with saline spray then blowing your nose is perhaps a way of keeping the multiplying virus in check?
I think it is definitely worth considering - for anyone concerned about Covid, whether you do it daily as a possible preventative measure, or four times a day when you test positive (to potentially reduce the impact of Covid).
I did get Covid, in July, so was obviously not completely immune!
Thank you so much, this is a fantastic tip . I will send my husband out shopping (he hasn't contracted it yet so my isolation may at least be working for him!) I have been gargling with sea salt and warm water every two hours throughout the day and in doing research on this I found some benefits which may help reduce the viral load too.
"How does saltwater clean your throat? When you gargle with saltwater, you are submerging the cells and drawing liquids to the surface, along with any virus and bacteria in the throat. When you spit the saltwater out, you’ll rid the body of those germs, as well. Another benefit? Moisture on the surface of the throat acts as a lubricant and helps soothe irritation."
I really appreciate all the concern I have been shown on this feed. I seem to be turning a small corner thank goodness having managed to SI yesterday with my reduced dosage of B12 without coming out in hives (please see conversation above with Technoid). This is my first altercation with Covid so after the NHS refusal to treat I have turned to natural remedies for help and the Wim Hoff breathing method - for anyone reading this however I am NOT recommending this as a treatment method for ANYTHING and certainly NOT without full research and practice - it is NOT a subject for health matters regarding PA but has helped me with other conditions such as Asthma enormously; we are all different.
It is a good tip. I use coconut oil (yes, up my nose - fortunately I like coconut!), having found that I reacted to the chemical on the testing swabs and that copious application to nose/throat reduces impact considerably. I gargle enthusiastically with salt water (as it is supposed to be good for the vagus nerve, like singing) and also oil pull regularly with coconut or extra virgin olive oils. I know from the Sjogren's forums that those with less natural moisture in passages are at increased risk of catching anything airborne as less to trap it as first line of defence, so many use some form of additional moisture-provision. I find I get a really dry mouth in the night, so when I wake I sluice mouth with a salt water/bicarb mix for a minute or so and spit, and it helps a lot. Plus lymph exercises morning and night. So maybe the combination of that lot played a part with my moderate covid, too. When it was at its height and I had to go out, I could coconut oil my nose behind my mask and no-one could see me shining like Rudolph!! Now I do it when I get home....
Yes, Coconut oil has so many health benefits, it will never cease to amaze me how mant there are, including yours!
I wonder if you have ever read "Breath" by James Nestor. Almost certainly you are mouth breathing at night causing your dry mouth. This is a book everyone should own! It is an incredible factual book about the role our noses play and how we have lost the art of breathing correctly - through our noses. Far from being sensationalist or attention grabbing, James put several years into his research, some of it he was personally involved in, and the information he uncovered means all of us, especially those with autoimmune diseases, can improve our health for free and it is all scientifically documented.
I was reading this book and another by Wim Hoff when I was diagnosed with Pernicious Anaemia 9 months ago and both have provided a supporting role in improving my health as I started B12 treatment, that is until it all unravelled as you will see above amongst my many replies above......
Thank you for that. I don't know the book but will get hold of a copy. I don't think I mouth breathe now (but can't be sure!) although I did for most of my first 50 years as I struggled to breathe through my nose at all until I gave up dairy, by chance resolving that particular issue. Now I can breathe easily! As I have fibro, small fibre neuropathy, burning mouth and possibly Sjogren's, there could be a number of reasons for mouth getting abnormally dry. Best wishes
Good to hear that you were able to correct your breathing and become a nose breather again and healthier as a result. Yes, you are absolutely right, intolerences often cause nasal congestion and you clearly solved yours. Sorry to hear that you have all these other conditions that cause you a dry mouth, it can't be pleasant.
The book is a great read for mouth breathers like myself - now an ex-mouth breather! but for all nose breathers it serves to explain why it is so important to breathe the way we are meant to, how our noses and mouths have evolved due to modern living and why mouth breathers may be causing themselves a few health problems.
Glad to hear you are making progress too! Quitting gluten was also a rather late but revelatory experience for me. Breathing is hugely important but I used to get really annoyed with the CBT/mindfulness/pain management type people always wanting me to focus on my stomach for breathing when that was the last place I wanted to be thinking about - once I stopped seeing them and found tapping (EFT) and meditating and had a nice little calming mantra for breathing I could deep breathe without even thinking about what my stomach was doing and was far more relaxed and in much less stress and discomfort as a result.
I’m glad you’re starting to turn the corner - hope your recovery is speedy and smooth! Thanks also for the info on gargling with salt water - I’ll add that in next time I get Covid!
Another good one is sleep - I have a brilliant book by Matthew Walker (a British doctor and academic, currently in the US), called ‘Why we Sleep’. In it, he says that our immune systems don’t tend to work very well if we are consistently getting less than 8 full hours of sleep a night. And in fact the immune response to a vaccine is massively reduced if you got less than 8 full hours of sleep the night before the vaccine. Even getting ‘only’ 7 hours of sleep is really damaging to the immune system (and general health).
Alcohol, caffeine, other stimulants, and night-time shift work can all impact heavily on quantity and quality of sleep, and consequently on health and the effectiveness of our immune systems, unfortunately… I have managed to cut out alcohol, but am struggling to reduce my reliance on caffeine and late nights!
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Pernicious Anaemia
long time Pernicious anaemia sufferer!
Is it Pernicious Anaemia or not.
Pernicious anaemia?
