As an American living among far less progressive standards I’m so glad to discover this community. I’ve been trying to focus my brain cells to make this brief as I can. Thanks in advance for your generous reading.
I’m a 60 year-old female who has for five years reported memory and cognition changes, shortness of breath, fatigue, minor balance and vision issues, occasional mild dizziness, skipping heartbeats, headaches, cold hands and feet and—worst of all—hyperosmia. Desperate to ease the latter I found a study showing that, while some people with PA experience reduction in their sense of smell, others suffer an extreme increase. I live and care for my spouse in a senior community where smells can be a lot. Much as I'd love to be able to read again I'd happily give my entire library to be free of the overpowering smells.
The bulk of my symptoms were “treated” by my rheumatologist until he retired two years ago. He diagnosed Reynauds for my cold extremities and lumped everything else into Hashimoto’s and “unidentified ANA markers.” I get by with lozenges of cyanocobalamin (1,000mcg with Folic Acid X 4-6). The two physicians I’ve seen say B12 absorption is good though they’ve seen very few if any PA patients. The hematologist specializes in treating cancers and he positively lights up when he discusses those treatments but seems far less comfortable with PA. When I mentioned changes to my tongue, for example, he exclaimed “Well THAT can’t be related!” When I got home I looked it up and the answer confirmed my concerns.
The hematologist at first declined to see me because my B12 topped the range from supplementation. It’s never been tested before so we don’t have a history for comparison and there’s no way I could give it up for two days much less the weeks required to test it sans supplements. Intrinsic factor blocking antibodies are positive but of course “this is entirely due to supplementation,” says the hematologist. Parietal antibodies are 109 yet, even with the tongue weirdness, the hematologist states categorically “Absorption is normal. ”MCHC has been extremely low as long as it’s been tested, about eight times over four years. I’ve had other measures of anemia—attributed to nutritional deficiency when discussed at all. My primary provider wisely checked Methylmalonic Acid, normal at 0.28 and yet another “conclusive” factor cited by the hematologist.
The correlation between the appearance of an “X-Men” level sense of smell and when I’ve let B12 lag is so direct that I have no doubt about PA, only of how to convince a doctor to help. Your kindness in reading my tiresome tome means so much. I appreciate any ideas you can share.
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Pamelayne
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From what I have read ( i'm not medically trained ) it does sound like a B12 deficiency. The heightened sense of smell must be awful. With regard to your tongue somebody had put a picture on here where their tongue was wavy at the edges, a smooth tongue is also a sign of a deficiency. I didn't have the sore tongue I had the sores at the corner of my mouth.
Did they check your folic acid ? Many Drs and consultants do not understand the condition hence for the need for such sights as this one ! My haematologist admitted she new nothing about it and my Dr was much the same.
I can relate to the cold hands and feet and were also diagnosed with Raynauds ! My blurred vision was the first thing to resolve once I were on injections. The other symptoms have taken longer to resolve. You could try asking your Gp for a trial of injections to see if they help. I took it into my own hands and now self inject.
We have had other people who live the USA suffering the same plight as yourself. It seems to be a constant battle for many of us.
Thanks Jillymo; you've got me thinking. Like you I have occasional mouth sores, understand this goes with the gastric part. I did ask doctor for a trial of shots and his answer is that insurance won't cover it. On reflection I sense he may just be unsure how to code it so they will. Insurance hasn't declined a claim in the 20+ years I've had it so I'll call them and ask! So glad you responded!
If refused you could always do as many of us do and consider self injecting ! The sores at the corner of my mouth only started to heal once on treatment. If you have PA you will have low stomach acid so will not absorb sublingal hence the need for injections. I assume your not a veggie or a vegan and eat a good diet. You can google the PA society it will give you a long list of symptoms..........
What are the symptoms of Pernicious Anaemia ? Common symptoms include extreme fatigue, weakness, shortness of breath, brain fog, tingling, numbness, beefy tongue, depression, irritability, mood swings, burning feet, dizzyness, loss of appetite, problems concentrating.
Fingers crossed your insurance will cover you for injections.🤞
Didn't know this is possible Jillymo! Is the medicine available without a prescription? You've given me so many things to explore in like half a day; I'm so grateful!
Many of us in the UK by our supplies from Germany. If I were you I would write another post asking where you can obtain it from and who posts to your part of the world, somebody will respond.
I would rather self inject than risk further nerve damage. Stay on site read others posts and learn as much as you can about this wretched illness. Also explore your gut health to make sure your absorbing. I had gastroscopy and a colonoscopy which showed I had errosive gastritis and to my surprise Crohns disease ! Eat a healthy diet as it does seem you are absorbing the sublingal meds.
I hope you make some headway and your soon on the right road to feeling a little like your old self again. 😘
Dunno how I missed your kind response earlier Jillymo. Your suggestions feel right on point. I have indeed been trying to improve my gut health, first with expensive capsules (understand those limitations) and now with Kefir and other fermeted foods such as a slightly bubbly ginger ale my tummy craves now. We're even trying to aquire a taste for Kimchi—from a jar as I'm not that ambitious. Still there is much room to improve my diet so I appreciate that reminder, too.
So Medicare covers injection if B12 is below 200 and no other cases are listed. The hematologist suggested his hands are tied, that doctors have no discretion anymore. But I know doctors are always prescribing off-label. As usual I appreciate any insights. Reading a lot about oral supplementation supposedly being sufficient?
I have found that in the USA that physicians often will give out incorrect information about what is covered by my insurance company. I no longer stress as much about the information I get from physicians and consider it part of the process for me.
I was once told that my insurance company would not cover a CT scan would be to dangerous to check to see if a stone in my silica gland had passed. Better to cut my duct and surgically make a new gland.
I do not know if you have access to a paticient portal. I do and find it helpful to write to my physician prior to an appointment. Pretty much create a record and get away from the he said I said issue. I put them on notice in a nice way.
Heaven's WIZARD, sounds like you had to make a tough call and I'm glad it seemed to have worked out. I could be a lot more proactive with my health, feeling inspired as I see what others have done.
I'm a retired scientist, not a medic, but I spent a very long time doing investigations for PA etc. You mention your MCHC being low. [Pet rant now: MCHC isn't the best measure of anything nowadays. It's derived from Hb, RBC and MCV and depending on what system is used, the MCV isn't as good as it was.] More useful to give us the Hb, RBC, MCV & RDW if available, as they can tell us a bit more about what's going on. Some clues to Folate and Iron status in addition to B12 would be helpful too.
IFAb positive, and Parietal Cell Abs positive makes it all sound very much like PA. As others will advise, self-injection is unlikely to do any harm, but it's wise to have the first one with competent support in case of the very rare anaphylactic reaction that can be seen. The assumption that the positive IFAb being entirely due to supplementation could be right, but my money is betting on it being a true value.
As always, it's better to treat the patient rather than the numbers.
FlipperTD I can't tell you how much your post is helping. Your scientific perspective is what I've needed most. I'll post the other values but I think they're all in the normal range except for iron.
I've already imposed with a link to the values you list, FlipperTD. Here's a final draw unrepresented with the others. Feel free to post about them here as it will likely help someone else, too.
Reduced saturation generally indicates iron deficiency, but needs considering with all the rest of the results; particularly MCH & MCV, plus Hb. Much of this depends on the fact that you have been 'normal' in the past. Folks carrying a Thalassaemia Trait [quite common] have a reduced MCV and MCH regardless of iron status, and they're rarely deficient in iron anyway. [Long droning reason why, which I'll save for some other time unless someone asks!]
The Haemoglobin [Hb] molecule consists of Haem [with the iron in it] and Globin, the protein bit. A molecule of Hb has two pairs of unlike globin chains. In adult Hb, it's a pair of Alpha, and a pair of Beta chains. Production of these is balanced, so there's no excess of one or the other. In thalassaemias, the production is unbalanced, due to the genes they've inherited. Inherit a beta thalassaemia gene and you don't make enough beta chains, so you have an excess of alpha chains, and vice-versa. [It's actually very much more complicated than that, but it's a start.] The inability to make Hb at the correct rate results in smaller red cells being released. So, at a glance, to the uninformed, a thalassaemia trait case could be mistaken for a case of iron deficiency. However, there's typically no shortage of iron in these cases, although it is possible, of course.
So it's important to consider that a microcytic picture isn't always iron deficiency. We learn this quite early on! Needless to say, the combination of other pathologies can make it a challenge.
Sense of smell: When I was first given injections for B12 deficiency, my sense of smell went haywire.
For example, one day, I could not shop in a local supermarket because every time the automatic doors opened, I could smell sewage. I kept trying, knowing that this was not real. The doors opened, and there it was again ! I was fighting a losing battle; common sense vs false sensory information. I went home.
For a while, I had to double-check with my partner.
Since then, my sense of smell is more powerful and now seems to have corrected itself. Mainly I just notice this with more unusual smells, fortunately some of them wonderful. On spring evenings, my living-room is filled with the smell of the lilac tree situated in a neighbour's back garden. I would also certainly be an asset in stop-and-search drugs law enforcement teams ! Not all smells are wonderful when amplified, and I sympathise with you.
Let's hope this either calms down or you become more accustomed to it.
Tongue and corners of mouth: I have in the past posted photos here of these conditions and others.
My tongue is now not as awful as it was but can still have "pie-crust" or scalloped edges. The daily burning sensation, so I've recently been told by an Oral Medicine consultant, is due to nerve damage, and likely now permanent.
The sore, bleeding, split and peeling corners of my mouth (angular cheilitis) have been examined for years. Candida and staphylococcus have been ruled out after many attempts to develop cultures by the Oral Medicine team. They recommended I use nipple cream (100% lanolin) twice a day being careful about application to avoid any potential reinfection. This worked almost immediately and continues to work well. However, if I stop treatment, the condition returns just as quickly - so control, not cure.
I was diagnosed by my GP, fairly early on in B12 treatment, with functional B12 deficiency. This meant that my B12 injections were increased to two per week, which continued for six months. I now self inject at this frequency. Thankfully all other possible causes for any of these and my other symptoms have now been explored and eliminated ( bowel cancer, Coeliac disease etc) over many years of consultant appointments and tests and I have my very thorough GP to thank for that. Given this, I am happy to accept functional B12 deficiency as a diagnosis that is able to explain all of my symptoms, and frequent self-injection as the best means of managing it. Again, this is about control only.
You mentioned not being able to read currently, but not why. Vision issues or perhaps memory / cognitive loss ? I was unable to read for years due to the latter cause, but started gradually: reading graphic novels (visual memory aids), then reading aloud to partner a chapter at a time. I can now read alone again !
Thanks for sharing your experience Cherylclaire. May I ask how your testing for B12 proper went...meaning did you test low before supplementing or did you have to try and hold off supplementing for a while? Honestly I think I'd give up my sense of smell entirely rather than experience this. It's always accurate, though. In our building with 350 apartments I'd heard there was a water leak but knew not where until one day I caught a faint whiff of mildew twice. The cleanup team had told our manager it was finished but she made them return and they found an area that needed more drying. Ordinary things like someone's crockpot meal, sometimes my own breath..it's like being pregnant. Maybe we should hire ourselves out to high-end perfumers?
Thankfully, mine has calmed down and my brain is now able to identify smells more accurately. A re-set.
I didn't supplement with B12 - I'd never even heard of B12 before being told I was deficient in it ! I had no idea why I was feeling so awful.
In about 2015, I was getting exhausted at work - and took no notice. I started finding that I could do nothing in the evenings except recover. Later still, I had lower back pain, left-side abdominal/ groin pain, daily diarrhoea and fatigue. Stiff hobbling feet on waking. By the time I was using the bus-stop stand in the morning to hold myself up, just to get to work, I knew this wasn't right ! Several trips to the GP and bowel cancer ruled out, then abdominal/ groin scans revealed nothing, with the physio treating it like bursitis. Work was getting really difficult and I was finding it harder and harder to concentrate. My hair was falling out and my gums were bleeding. All I wanted to do was sleep.
I kept going back to the GP surgery. Then early in 2016, blood tests revealed a very slight B12 deficiency of 196 ng/L (with "normal" range starting at 197 ng/L ) and that was enough for the GP to start B12 injections. When she realised that I was continuing to deteriorate, she added 3 months' folate and ferritin supplements (both were low within range).
Then got my MMA tested. As it was raised - and renal problems already eliminated - she gave me a functional B12 deficiency diagnosis, confirmed by the testing laboratory. She had suspected this to be the case, and knew what to test for as she had had one other patient previously with the same problem - a whole decade previously !
So in late 2016, I was restarted with 2 B12 injections a week which would continue until no more improvements possible, then onto a maintenance regime of one injection a month. As I was showing gradual improvements finally, the GP continued my frequent injections for six months. Some of the nurses were not quite as delighted with this !
Eventually, I had to self inject, as the maintenance dose offered was not able to maintain the small gains I'd managed to get. I felt there was more to be had. The advice from a locum haematologist to my GP was to stick to the medical guidance and cut these injections down to one every two months. I knew this would not work for me - and at this point, just to keep my job, I was aiming for an agreed phased return. I really felt I had no choice by then, and my GP raised no objection when I told her. I told her the day after I had done my first injection, so she couldn't talk me out of it ! This was in late 2017....
Despite my GP looking for more or better answers for years, nothing but eliminations came back from various consultants' appointments and tests. I was always honest about my self injecting regime. I have had three negative IFab tests. The only positive findings have been patchy gastric metaplasia, a flattened mucosal pattern in the duodenum, osteoporosis of the spine, ventricular ectopics, CAC, angular cheilitis, burning tongue and saliva duct strictures.
So functional B12 deficiency remains my diagnosis, treated by two injections a week self-administered. I have been doing this for about six years now - by and large, this allows me to manage my symptoms . It isn't a cure.
Luckily, functional B12 deficiency, where there is a problem in the transporting of B12 to cells/tissues, is quite rare. It is difficult to detect initially as serum B12 levels can appear either within range or high. As methylmalonic acid (MMA) can build up, alongside B12, in the serum, where the link between these two is not being made effectively, an MMA test which returns a raised/ high result can be an indicator. Both renal problems and small intestine bacterial overgrowth (SIBO), as they can also raise MMA levels, should be eliminated as the cause.
Despite all these B12 injections, my raised MMA did not drop into range until my 6th test in mid 2019. It has not been tested since. My folate and ferritin can be erratic - these were monitored regularly until my excellent GP left the practice. My osteoporosis has reduced (!) - vitamin D and Raloxifene daily on prescription and plenty of walking - to osteopenia, and I have a Dexascan due this month.
Thyroid should also be monitored to ensure that it is not showing signs of struggle. For those with pernicious anaemia (PA), there is the risk of further autoimmune conditions: Hashimoto's or Grave's diseases, psoriasis, vitiligo etc. A family history of autoimmune conditions can help with a diagnosis. Despite plenty of that in my family, including two sisters with Grave's disease, my thyroid appears to be okayish. For this check, it was recommended to me to get a full-panel test privately: a 6-part postal blood-test including anti-TPO and anti-TG with online results proved worth the £60 for peace of mind, and not available on the NHS. Thanks, Marz , for the advice.
For all the other tests, appointments and monitoring, I have the NHS to thank.
Your knowledge about the subtlest aspects of this is impressive Cherylcaire, and you're right on about me on many counts (Hashimoto's, family history of autoimmunity, etc.) My MMA is normal and I didn't know until your post that it's a marker of SIBO, which I thought I must have. I was diagnosed at Mayo Clinic with Trigeminal Neuralgia about twenty years ago but before I made my way there I was undiagnosed by dentists and oral surgeons who removed teeth and gave me six antibiotics over nine months. I'm glad to find so much awareness of the gut microbiome here as I'm also convinced of its importance.
You can be tested for SIBO - it's a fasting breath test series over 3-4 hours. I was referred, by haematology I think, to eliminate SIBO as the cause of my raised MMA.
After 4 MMA tests, the haematologist was leaning toward deciding that the constantly raised MMA must just be my usual level - later on, and many B12 injections later, my MMA did in fact drop down to normal.
It had taken three years from my GP's original MMA test request and subsequent diagnosis. It had just needed more B12 to get it shifted. There isn't much written information but Turner and Talbot, neurologist researchers, wrote an article in 2009 called "Functional Vitamin B12 deficiency" suggesting as much. I took it to my first haematology appointment, but it was ignored as being outdated.
[Incidentally, I found it hard to trust the haematologist anyway - after being told at this first appointment that B12 was toxic, carcinogenic and highly addictive !]
I’m in the US too. IFAb positive, and Parietal Cell Abs positive means PA and most likely AAG. I have both along with Hashimoto's. Get an endoscopy to confirm. Start self injecting if you can’t find a doc to prescribe. No harm in taking it, even if you’re not deficient. It will take time for symptoms to reverse, has taken me 7 months to feel fully recovered. Also, check iron levels. I was also iron deficient and have been on iron supplements along with C.
Thanks so much ReallyWondering. It's comforting to meet someone whose already walked one's path. Please tell me what the endoscopy would be of? Last doc told me expressly not to take iron as it's stored in the liver. He did encourage me to take as much as 5,000mcg B12 per day orally. I was taught to do self-injections of blood thinner years ago and the lovely nurse advised me the technique (pinching fat) works with other shots as well. You're right ofc about Vitamin C...great reminder. 7 months though‽ Ugh.
They biopsy your stomach to confirm Autoimmune Atrophic Gastritis. They also look at it to see if parietal cells have eroded. Have you tested for intrinsic factor antibodies or parietal cell antibodies? These would show you that something is going on that’s impacting your B12 absorption. I take iron because I am deficient.
Thanks RW, yes...parietal cell antibodies were high at 109. I was surprised when I had to reach out to the doctor after the results came in as he didn't acknowledge it at all. When I did he said I'm clearly absorbing B12 sufficiently because my levels are so high. Is there a counter to this argument? He mentioned no further testing options or behavior. Feeling a little mad about that, if I'm honest.
Your doctor is misinformed. Most likely you have AAG and PA and cannot absorb B12 via your stomach. You’ll need to get on B12 injections right away. The longer you wait, the more risk of permanent damage to your body. Do you have any pins and needles in your extremities?
Yes, RW, in fact I do sometimes on my right finger. Limbs seem to fall asleep much easier and more completely when I lie on them, too. Your encouragement means a lot. Feel like I can assemble some notes to take another run but wish I felt more confident about the science. I can say "A positive intrinsic factor could just as easily point to PA as to supplementation" but it it really just as easily? That said, I trust the consensus here and, even if he turns out to be right, he needs to convince me, right?
A positive intrinsic factor antibody means you have autoimmune antibodies attacking your intrinsic factor which is needed to help absorb B12. However, not everyone that has PA tests positive. A positive anti-parietal cell test means you have an autoimmune disease attacking your parietal cells in your stomach lining. These are also required for B12 absorption. That’s why an endoscopy is also required. They biopsy your stomach and look at the lining.
Hello Pamelayne! Southern USA fellow PA patient here. I was diagnosed back in the 90s by a very clever internist who deduced my intestinal surgery as an infant left me with no intrinsic factor. He did a Schillings test (which is no longer available) and the results were crystal clear. Even with a definitive diagnosis, I've learned to never expect any doctor to understand this condition or how best to treat it. In the US, cyanocobalamin is the standard treatment given once per month. But what if you don't want to try to eliminate a cyanide molecule every month. What if you think cyanocobalamin is not natural but synthetic and you want to try something else? After reading extensively, I think hydroxocobalamin is the way to go (along with most of Europe and the UK) . It hasn't been available to me in the US ever, even though I file the prescription with my pharmacy and ask them to order it. The response I get is that the suppliers aren't manufacturing it. Even if they did fill it, my insurance would require me to pay for it because it's not the US standard. (A compounding pharmacy could do it but costs hundreds of dollars) So I order my needles myself, order my hydroxocobalamin myself from Germany and inject myself every other week. Is this fair? No. But I order twice per year in the cool season enough to last me and take my health into my own hands because otherwise I would be in terrible shape. It is outrageous that B-12 can be given in fat clinics or to athletes but patients with PA are left to source it themselves. Amazon.de is where I order it from. Panpharma is the drug company. The sooner you can work yourself around to taking it into your own hands, the better you will be. The first injection should be monitored by medical for any reaction but from then on you can handle it.
Deejinsc the benefit of your help is inestimable. I really can't thank you enough! If I order soon I might be within a safe window. I'm literally sighing in relief. I agree it's a shame we're so far behind here in the states. Someone like you definitely gives us hope, though!
Deejinsc has given you good advice and remember you cant overdose on B12. If like me you have injected blood thinners you should be able to inject B12 without an issue. Here in the UK they prescribe 3 monthly injection ( its the one size fits all nonsense ). We are all individual and need different regimes. As for you question about an gastroscopy it looks at the gut linning and can take biopsies. I had one done in January which showed I have errosive gastritis which would affect absorbsion. I went on to have a colonoscopy 'yes a pipe putup where the sun dont shine', this looks at the colon. To my surprise it showed I have Crones which is another reason I am not absorbing.
I am really pleased to hear your feeling enlightened with some of the advice given.
Bless you Bless you Bless you........here's a huge. 🤗
That is surprising, Jillymo, as of course Crohn's is so debilitating. That couldn't have been easy. I'm so glad to know you're being treated even if it's not to the degree it should be. I've copied your idea to my list of things to bring up should the specialist agree to see me again. How much he could learn from an hour here!
I can definitely relate to the scent sensitivity. Even though I was on the shots for years, I started getting this strong scent sensitivity and realized once I started increasing my frequency that it was low b12. I also get a very sore tongue amongst other symptoms when I’m low. Even though my mma is fine too. I don’t even bother with cyano anymore as methylcobalamin works much better for me. Hope that helps!
Another huge help Swift20. I really appreciate not having to re-invent the wheel here, and our reactions sound so similar. After reading you all I feel the first relief around this I've known in four years. Thank you • Thank You • THANK YOU!!!
wow. didn't realize lozenges or oral b12 could drive results that high.
So, perhaps hold off taking the lozenges for 4 months and get tested again. in the meant time look into the other stuff.
i mean it helps to actually know.
However, in my case I did have a test that showed 190 before any supplementation but the docs didn't think I needed any injections. I didn't have 4 months as I was at risk for loosing my job and career so I bought supplies and just started injecting.
I hear you B12life but at this point I couldn't possibly go two days without supplementation. Never mind the headaches, dizziness, and cognitive issues—The amplification of smell would be more than I could bear.
You're on to something but my provider is very concerned about too much added thyroid causing bone loss or something. I'm certain I'd do better with a little more. Maybe it would be worthwhile to find someone else?
Sorry Marz. I was referring to the controversy about lab values and the view that TSH should shift significantly to the left. My doc refuses to be swayed by this argument. I've taken 75mg Levothyroxine for about five years (first thing in the morn. on empty stomach, lots of water). Antibody test was very high when done years ago.
FlipperTD can attest to how comprehensively I can send lab results yet, for some reason, the last two years only show my TSH while from 2020 only the FreeT3. It's odd because I spoke with my doc about the necessity of measuring both frees and I've looked with interest after every draw. For the past two years there's only an item called "Thyroid Function Cascade (TFC) Panel" and when I click on it there is only TSH represented. Here's an image of all the FreeT3s, again all I have available now that I meet someone who's actually interested 🙄
I know this won't say much at all and I'll try to speak with someone at the portal tomorrow.
As your FT3 is below range on 2 occassions and also VERY low on the other 2 - I would suggest many of your symptoms are caused by LOW T3. Many of us visit Thyroid UK Forum here on HealthUnlocked as well - to gain additional info and support....
I was there reading for 30-45 mins before bed. URL was thyroiduk.org/get-support/t...? Searched for "symptoms of low T3." If I have an account from years ago I didn't log-in, didn't realize you'd be looking for me.
Kinda curious about the expectation I'd be there and visible. Since it's not the same forum my username wouldn't be likely to match. I'd be interested to hear your thinking.
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Oral (passive) treatment of B12
MMA results - supplements or further test?
Seeing a biochemist to discuss maximising PA treatment...any ideas for questions?
Pernicious Anaemia and Covid Treatments
