I’ve had experience with the NHS and trying to get them to listen. I previously suspected that I had hemochromatosis when my GP didn’t suspect it. I paid for a generic test which came back positive. So after reading various posts on here I’m preempting my GP not looking into a PA diagnosis. My B12 levels have already dropped from the 400’s to 200’s in just over a year.
I understand that many people decide to self administer B12 shots. When would one do this as in is there a certain level of B12 that would push someone to take this route or is it when symptoms show?
If I decided to self administer how difficult is this? As in the cost / availability / method?
I’ve chased my recent biopsy results up today but they said it could be another 2 weeks. So, for now I’m none the wiser. All I know is that my recent endoscopy showed generalised atrophic gastritis mucosa and I’m low on folic. Only symptoms I’m having are churning in my stomach and pale stools. I had an endoscopy previously to confirm Celiac disease and I recall I had inflamed gastritis back then so it’s definitely progressed. My recent endoscopy said H Pylori negative. I also have Classical Ehlers Danlos syndrome which is a connective tissue disorder, Gilbert’s disease and hemochromatosis.
I’ve paid for a private PA test which includes IFAB which I have next week. My plan is to take 1000mcg oral supplements until I know a little more regarding the biopsies which were taken via the Sydney protocol.
Thanks in advance!
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Before I got tested the haematologist told me I must go without any B12 supplements for three months before he would test. If you have PA (and I suspect you do), supplements wouldn't do you any good anyway. PA is the inability to absorb B12 through the stomach, so the supplements would do nothing but just make the blood look falsely high. Doctors should take your symptoms into consideration just as much as blood levels. Even if your blood levels are within range (but lowish), and you have neurological symptoms they must be addressed. Also to leave symptoms untreated they can become permanent and even if B12 is then injected it could be too late to reverse it. I have been treated appallingly, as are so many of us. So many GP's do not seem to care what happens to us.
Thank you. I do not have any neurological as of yet. This was why I was asking how does one go about self administering B12 if the time comes and my GP doesn’t listen.
I agree 100% with what you write .It is appalling how P.A. patients are treated( well , not treated ) I have permanently painful burning feet through lack of treatment . I can’t describe how my life is affected .
I am so sorry to hear that wedgewood. One of my symptoms is burning feet at night and it is horrendous. It came back after GP stopped injections 4 years ago saying I did not have PA and it must have been a misdiagnosis, but these symptoms came back and tests showed that I do have PA. However there was no intensive B12 injections until symptoms improved and then every 8 weeks as in guidelines. No just every 3 months (not even 12 weeks). I have to have district nurses come and do mine and they interpret the guidelines as not to be given earlier than every three months but it does not matter how much after the three months it is given. I had the burning feet at night, tingling in hands, feet and legs all day. I am now buying my own B12 and I have been injecting every other day for a few months now. The tingling in my feet, hands and legs has stopped. I still have a little bit of hot feet (no longer burning) during night but it does not prevent me sleeping, like the burning feet did. I still have the D/N's coming whenever they like with their B12 injection. They do theirs in muscle and I do mine subcutaneously (in skin/fat). Injecting oneself is not much fun but compared to burning feet it is worth it. I take 5mg of folic acid when injecting as it helps the B12 to be absorbed better.
I’m really pleased that you are improving. That is truly great news . I was left too long without treatment , so my feet will never recover . All for the lack of cheap B12 injections . But this forum is really a life-saver . Best wishes
Hi, there are links between gluten and B12 deficiency through molecular mimicry/cross reactivity with parietal cells. So you may be increasingly unable to produce intrinsic factor as well as stomach acid, but it may not be pernicious anaemia. Either way you will most likely need injections, not oral, and at this point it would just obscure your testing. Best wishes
Hi there. Thanks for your reply. So the best thing I can do is wait for the biopsy results and further tests? I am just worried that the B12 may drop even further before I know anything further. Does the drop in B12 happen quite quickly or will it take a few months? I have also been given folic acid to take but from what I can gather taking this can affect B12 in some way so I am not sure whether to take the folic or not?
Hi, I cannot advise you, I'm afraid. As Nackapan said it would be sensible to hold fire until more testing has been done. Even if neurological symptoms are present, it is still better to wait for a proper diagnosis if one is achievable - once you've had all the tests and got nowhere, that might be the time to think about self-treating (and plenty of advice here on how to go about that if needed). But you have the benefit of time with not having neuro symptoms and it is generally a slow drop not a fast one. Personally I would not think the folic a good idea. The testing and B12 first, and then folic or folinic or methylfolate.......high dose folic is not right for everyone. Get and keep a copy of all of your test results and see how things develop. Cheers
Thank you and this is my plan. I will await the biopsy results, take the PA test await those results and take it from there. In the meantime I have contacted my haematologist who i am under the care of for Hemochromatosis to make him aware.
I know someone who has haemochromatosis initially diagnosed by a private genetic test and then by an NHS test. In her case haemochromatosis led to an enlarged liver that caused pain in her side for many years. She then discovered that she had had a very high ferritin levels for many years (ferritin levels are a key indicator of haemochromatosis), and routinely now has venesections which bring down the ferritin levels. The haemochromatosis also led to gall stones and gallbladder removal.
If you have haemochromatosis diagnosed by a private genetic test, you need to get your ferritin levels checked; the NHS should also do a genetic test.
You also need to be in the care of a liver speclalist indefinitely and you will need to have fibroscans routinely (e.g. every year or every other year) to check that you are not developing any problems with fibrosis or NAFLD; typically a haemochromatosis nurse specialist organises the blood monitoring, the fibroscans and the venesections (if needed).
There are cases of patients with both haemochromatosis and PA but they are not necessarily linked.
Does your husband have PA as well? The person I know has had low levels of B12 but I don't think it turned into PA (she does not have B12 injections). She had terrible fatigue for years which was ascribed to ME for years and discovered that she did have low levels of B12 - fortunately oral tablets worked and it seems that the intrinsic factor and parietal cell issues linked with PA have not developed.
My haemochromatosis genetic test was via haemochromatosis UK. I have C282Y homozygous. I have had ultrasound, fibroscan and MRI of my liver all normal. My levels were Ferritin 1276 and iron binding saturations 91%. this was all at the beginning of 2022. I had weekly venesections for just over a year. My levels are now where my haematologist feels are good. Therefore, I have blood tests every 3 months and a venesection when needed. All this was picked up incidentally when applying for life insurance. I am glad it was discovered before it got worse!
That all sounds good. When you get your new B12 test done, see whether you can raise your B12 levels to much higher levels (e.g 500 ng/L) using 1mg tablets. It took me between 6 months and 9 months to raise them; I sometimes took 2 tablets a day but it made me feel wired. Getting the levels back up gave me energy again.
You have not talked about having symptoms of extreme fatigue. This is the most notable symptom of PA and from reading accounts on this forum, people with PA are floored by the disease until they get treatment. Do you have extreme fatigue?
Thank you. I'm assuming you have autoimmune atrophic gastritis? I assumed it wasn't possible to raise the levels via oral tablets? However, this was my plan after my next B12 test and until i get the results back from my biopsy etc. I am a little concerned that the B12 levels might drop and cause irreversible damage if i don't do something soon.
No fatigue at all at present. I can go to the gym normally as I have always done. I do not feel any different. The only reason i am investigating this is due to the endoscopy report showing generalised atrophic gastritis mucosa and the only reason i had the endoscopy was to check up on how my Celiac disease was going.
I don’t have gastritis. I have Bile Acid Malabsorption (BAM), a very common cause of gut issues; it appears to be common place for people with BAM to have Vitamin D and B12 deficiency. Bile is formed from cholesterol and cholesterol plays an important role in the formation of Vit D; people with BAM typically have NAFLD and elevated cholesterol and triglyceride levels; I’ve no idea why this affects absorption of Vit D. It’s not clear why BAM patients get B12 deficiency; some patients have had ileocolonic resections typically because of inflammatory bowel diseases; this reduces absorption. I had an infant ileocolonic resection which must play some part in this.
Oral B12 tablets definitely worked for me. If you don’t have extreme fatigue which is a sign of PA, maybe they will work for you.
Hi, unfortunately many people (even some with PA) can raise serum levels with oral/sublingual B12 (mine went above the top of the range), but it doesn't mean that it can get into the cells to do its job, so it is by no means a certain way to treat a deficiency and may well not repair damage caused by deficiency. With oral etc I just slowed progression down a bit, with injections I am starting to heal. Cheers
I guess I don’t understand why sublingual B12 supplements may not get into the cells even if you don’t have PA. I recently started taking a sublingual B12 supplement in between my injections and I definitely noticed an improvement in how I felt. It did raise my level higher than just injections by themselves.
I’m not sure what caused my B12 deficiency, other than the fact that I had COVID before I began to develop symptoms. Since then, I have had my intrinsic factor tested, an endoscopy, gastric emptying test, CT scans, etc. All came back negative/normal. I have no other health issues or disorders. I did work in a water damaged office for several years that tested positive for mold, and often wonder if that contributed to the B12 issue as well.
Hi, all I can say is that there are many stages of processing, any of which can go wrong. If sublingual is making a difference to your symptoms then you are absorbing at least some of it and that is good. Raising serum is irrelevant as it is not a useful indicator of effectiveness. I also used to absorb some of it, but less so now, so I really notice benefit only from injections. Increasing age doesn't help, even in otherwise fit and healthy people. It is interesting that you, like me, had high folate. In the absence of enough B12, it gets stuck and can pool in the blood. I have read:
'several studies have shown that people who have low serum vitamin B12 concentrations are more likely to have anaemia, elevated plasma total homocysteine (tHcy), and elevated serum methylmalonic acid (MMA) if they also have high serum folate concentrations.'
If no-one has yet tested hcy and MMA then that would seem like a good call, although both can also be normal and you still have treatable deficiency. It would also be interesting to know if you (like me) have genetic SNPs in one carbon metabolism/folate cycle/methylation, as you may do better with more or less of the methyl groups. Some with polymorphisms can't tolerate methyl at all and some need more. I had already started a low dose of methylfolate, having read that it might be helpful, and it made a huge difference for me personally (prior to private genetic testing, after which the reason made more sense, as with my positive reaction to magnesium). I was already on high dose oral B12, but now I don't know for sure whether the methylfolate supplementation simply bypassed my inadequate B12 (because I wasn't actually able to use the oral) or was working better alongside it.
If you aren't methylating well then it is likely that you would have had a disproportionate reaction to the mould as you wouldn't have been able to clear the toxins effectively. You should be able to test how well you clear toxins, even if you can't find genetic testing. But you'd need someone to help you with treatment as you could do too much too fast and get reactions. B12 is commonly low in those with chronic mould exposure.
I am working with a nutritionist/naturopath currently and we have talked about methyl issues as anything methylated really amps me up. My nervous system is so sensitive since having COVID.
I have had my MMA and homocysteine checked and both were normal. My folate has come down with injections and I am careful about eating a lot of foods fortified with folic acid. I will say that I’m having a hard time getting my B12, folate and ferritin all at good levels at the same time. I think if I could do that, I would feel almost normal? It’s so hard.
I have learned so much from this forum and you in particular as we seem similar in some ways in our deficiency issues. What is your ferritin? Mine was around 100 religiously until I had a bout of poison ivy in August and it plummeted to 60, which is where it was when my B12 deficiency was discovered.
I am glad to hear you have someone to work with. It can all get so complicated and what works for one can be dire for another. I only change one thing at a time and always start really low and slow. My ferritin has been awful for years, anaemic at one point, so no doubt that is still ticking away as a problem to work on. It has improved slightly since being gluten free and dairy free - wasn't absorbing anything at all really, so started using several supplements on the skin rather than try gut absorption. My B12/folate issue is unspecified but at least partly genetic as I am the 5th of 6 known generations.
Can you handle vit C, vit D and magnesium and do you have histamine or mast cell issues post-covid as quercetin may be useful if so (but chop the tablets into small pieces to begin with). Mould often triggers mast cells, as do viruses and autoimmunity. You might find this interesting from BMJ on covid etc bmj.com/content/370/bmj.m27...
I don’t have histamine or mast cell issues. At least I don’t think I do as I have seen many specialists and I’m now seeing a nutritionist who is extremely knowledgeable in functional medicine. I have looked up the criteria for both before and I don’t fall under either one. I feel like I don’t fall under any specific criteria which makes it hard to treat my symptoms when I’m not sure what is causing them.
I’m currently on a plethora of supplements that include D3, iron with vitamin C, probiotic, vitamin A, Omega 3, and magnesium. And of course B12. I do take a B complex every other day as well that includes B6, folinic acid, niacin and biotin. I also take a supplement with betaine Hcl and pepsin when I eat red meat as I’m certain my stomach acid is not the greatest. But this is honestly the best I have felt in 3 years. I’m still not great, but better than I have been since having COVID.
My worst symptom currently is chronic muscle tension in my legs. This is a symptom that will disappear for a few weeks and then show up again and be around for a few weeks. No clue why.
I try to limit gluten and dairy but struggle with that. I do feel better when I don’t eat it but it’s in so many foods that I like.
Thanks so much for the informative links! I appreciate your insight and hope you continue to heal like the rest of us. ♥️
That sounds good, I am glad that you are doing well and making some progress. Mast cells are funny things and many are affected by overenthusiastic activation without being anywhere near classic MCAS. I am weather-triggered, amongst other things and get all kinds of odd symptoms. It is possible that the muscle tension could be a mast cell reaction, but equally could be lots of other things including B12. I hope you can get to the bottom of it and that you also continue to heal! Thanks for your good wishes x
Hi, I'm sorry hear you're having such a rough time with your health
I'm just here to confirm that everything that mickeymouse42 has written is spot on regarding Haemochromatosis !
My husband was diagnosed with it over 20 years ago, and undergoes regular venesection and all the close monitoring measures mentioned, liver scans being particularly important.
I presume that as you were having symptoms severe enough to self diagnose, you've been found to have the " full blown " version of Haemochromatosis.
For anyone else thinking of genetic testing for this privately, be aware that Haemochromatosis is quite complicated genetically, with several different genes involved , which have implications for how it's treated.
I was tested ( because of our son's potential risk of having it ) and although I too have genes for Haemochromatosis, I am very unlikely to ever have raised ferritin.
My haemochromatosis genetic test was via haemochromatosis UK. I have C282Y homozygous. I am of Irish decent and this condition is named the Celtic Curse!
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