Did anyone get any strange or unusual comorbidities around the time of their B12 deficiency or PA diagnosis?
I just spoke with the hospital concerning a check-up on my parotid gland - a pleomorphic adenoma I had removed in 2020 along with a co-occurring thyroid nodule removal. They state that they want to keep monitoring the parotid area, even though it's coming up to three years since surgical removal.
It got me wondering about other co-morbid or co-occurring health conditions for other people. As it seems to me that the salivary glands are at the first stage of B12 absorption. The thyroid is not hypo or hyper, just half of it is now missing. Plus, I had awful gut problems in early 2019 and a colonoscopy removed 3 polyps. But I think that's when it all 'kicked off' following a stressful period.
By the time B12 deficiency came around in March 2021, I'd had about 100 hospital appointments (it felt like it) for other things. I'd literally just turned 40 and never had any health issues. So I just wanted to get through Christmas 2020 and have a couple of glasses of wine. But along the way I had peripheral neuropathy, palpitations, poor sleep, heat in the body - all put down to 'stress' and was made to feel like a hypochondriac by the GP. By Match I was most certainly anemic, so I called the GP and it took 30 minutes to suspect B12 deficiency. By then, I had severe psychiatric problems and confusion and thought that no-one believed me and I wasn't going to get help. So I started to self-medicate with sublingual thinking I could handle it myself. It was the worst thing I could've done but I'd been so busy with other health issues, I couldn't quite believe I had something else so horrible and debilitating to deal with.
What I'm struggling with now, because I'm undiagnosed for B12 or PA, is being able to communicate my thoughts about the potential of B12 deficiency in connection with the parotid tumor with the ENT guys. There is now, it seems to me, a critical piece missing from the overall picture in the form of B12 deficiency, simply because I was very stupid and panicked about getting treatment for B12 and wasn't thinking straight at all at the time (March 2021 was lockdown three, when it really took hold of the NHS and I couldn't get an appointment for a week. They'd stopped answering the phones and e-consult too two days for a response. Then another wait for a blood test for another week). In the end I tested normal and showed no signs of anemia (it was 2 and half weeks before the blood test and I was taking a daily sublingual...madness but I was not well and thought I was dying).
So, any meeting I have with them, I think I just have to play the game and pretend it never happened, otherwise they'll think I'm completely mental?
But it seems to me there is clearly a root issue in the gut and potential gut dysbiosis. When I'm asked 'is everything OK with your salivary gland' I start to think "Well, yes but the rest of me is totally broken. Anything you can do about that?' Maybe because he is ENT he won't be interested? But I would be interested to know about B12 deficiency if it did potentially relate to a salivary gland tumor because it's a key stage in the B12 absorption process, isn't it?
My B12 issues could be autoimmune/PA, but we will never find out since I've had to self inject for two years and am not fully healed.
A bit of a pickle I've got myself into and seemingly absolutely no way to get out except to pretent that B12 never happened and that I'm in full health. Which I'm totally not and inject weekly. Never had loading doses, never got a diagnosis.
But I am tempted to raise the issue in a face to face with the ENT. What do you think? Is it worth it? OR will I get yet a further stain on my medical record to suggest 'health anxiety'?
Life is odd sometimes!
All the best to you
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Pickle500
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Thanks Nackapan. It's sounds like you've had to manage quite alot without a diagnosis on the records.
In the end I pushed my levels up to 650 using a daily sublingual at 1,000mcg (cyano). I just couldn't think straight and was full of paranoid, anxious thoughts. I needed some help to get out the haze. I misunderstood the GP and then kept going with a daily drop...so it was pretty much my all doing, unfortunately.
I tried to calculate that if it was around 13 days of daily sublingual at 1,000mcg, if we divide 650 by 13 days we would get to a serum blood level of 50.
Of course it's total speculation but I'm fairly sure I was managing an extreme deficiency.
"But I would be interested to know about B12 deficiency if it did potentially relate to a salivary gland tumor because it's a key stage in the B12 absorption process, isn't it?"
[Edit] Bile and Pancreatic fluid secrete into the small intestine, not the stomach so it seems plausible that a haptocorrin production defect in the salivary glands could cause a problem with the protection of B12 from stomach acid.
I'm resigned to my own health anxiety diagnosis but I know the actual history and symptoms I experienced and also the important things that were conveniently left out of my record (like the 2019 dosage recommendation) so I now understand where they were coming from but also why they are wrong about it (the relevant information is not in my record). I'm not bothered to fight their system since I know more than they do on the topic and can effectively treat myself so I don't need anything from them anymore except some regular check-ups which they will probably fight me not to have done LOL.
Good they will keep monitoring for you for things of concern though. There is zero interest in proactive activity of any kind with my GP's, you are out of sight and out of mind as soon as you walk out the door of the surgery.
B12 is needed to repair DNA - if not available, cellular dysfunction can result which could potentially lead to the growth of cancerous cells. Ref : pubmed.ncbi.nlm.nih.gov/112... . I'm sure if you suggested to most GP's that B12 deficiency is a known risk for cancer they would outright laugh at you but the cited paper is from Bruce Ames, one of the most cited scientists in any field. Again we come back to nutritional ignorance and denigration of nutrient deficiencies as really "no big deal", an ignorant attitude we're all too familiar with.
I suppose my thoughts that the parotid and B12 could be linked is more rooted in the idea that B12 absorption stopped at some point. I had a low meat intake, but I was also in a stressful job and reaching for poor high refined carb choices. So my thoughts are whether a dysbiotic or imbalanced gut sort of broke out around 2019. And a consequence of that gut imbalance was a sort of malfunction in the salivary gland where it was strained or malfunctioned due to lack of B12 intake.
Tenuous perhaps.
At the very least neither tumor was cancerous. So I have that to be thankful for. It just seemed curious to get B12D and there is a good chance it was linked to poor sleep, stress, bad dietary choices and the odd drink.
You could push for monitoring if you do not have all of the answers to your problems and there is more going on. I realise it stemmed from dietary causes for your b12 deficiency.
So you have that answer.
Get blood tests from 'the system'
I keep up a presence at my surgery.
We must try snd keep the awareness out there .
We all need medical intervention at some time.
I'm challenging the system as want my prescription of b12 injections. Also to be on my medical record.
They have seen the improvements in me and have found nothing else to blame for all of of my symptoms.
I've also had to be a voice for my 93 year old mother.
She is on 2 monthly b12 injections.
Cherylclair posted about ENT and thr connection to blocked salivary glands.
Thank you. Well, there was for sure a dietary link.
But I was still consuming meat once a week. And fish on a regular basis. But over time, and with the stress of a job, I was reaching for quick comfort food and not paying enough attention to my choices. Fish and chips, pizzas, burgers. Terrible really but it's amazing the habits you form without realising what you're doing to yourself.
I guess I have to accept that it was diet. But I do feel that there was something that triggered in the gut around that time too, what with these tumors in various parts of the body. Like an outbreak or something!
And since B12 takes about 2-3 years to deplete once intake is stopped, I figured it must've stopped working properly around that time. My intake of meat continued but it was perhaps poor choices and an overworked gut.
Hello Pickle. I can emphasise with you regarding your frustration and on-going concern over not getting to a "full diagnosis". How you feel is total valid and entirely understandable to any GP ready to really listen and be open minded about it. It seems such types are rarer than we hope or would expect! I am a newbie here with little biochemical / endocrinology knowledge. But I do recognise the more than tricky position you are in regarding the underlying undiagnosed B12 issue. And I am working on how best to resolve it. You setting out your situation made me think more clearly of my similar one.
Two years ago, I could not name the GPs in my practice. Now, I too fret that they consider me a nut job with health anxiety issues. For reference only, in 2016 we did the Coast to Coast walk. In 2018 the West Highland Way. Early 2019, the Jurassic Coast walk. I was just out there doing stuff. Then in early 2020, the hot hands, the tingling feet, aching elbows started. Now I am getting numbness in my feet. It's literally terrifying, amping up my anxiety.
Like you, I too feel my diagnosis is not full / nor clear, having been told in 2021 after many tests, scans, 'scopes etc to consider I was just suffering from health anxiety. I am worried now, even with a nerve damage diagnosis they will just tell me to eat more meat and vegetables. We shall see.
I know you are thinking the salivary gland could be causal and / or a triggering / contributory factor. It sounds highly likely to me. Though I am beginning to suspect ( again like yourself) that we get onto the B12 ( vitamin deficiency) rollercoaster from a combination of lifestyle factors, co-morbidities / injury drivers.
That all said....as the saying goes, we are, where we are... So, what are our options..and approaches ?
I feel my challenge here is twofold. Firstly, how best to get the vitamin deficiency i.e. B12 situation diagnosed and secondly, having it better understood by your GP(s). The latter informing their medical response.
In terms of my approach, I have decided to try my very best to draw a new start line. Don't ask don't get. That's my key objective.
I will play it partly dumb where needed. But I am determined that this time, I will be more ready, less emotional, and not just tow the line to more ill health.
So, when I am asked by the GP.." ...how can I help? ..or let's discuss the way ahead? I will be better prepared.
I am going to calmly state ( without ANY rambling preamble, or past history, the following ..
1. I am still suffering greatly, and would like to draw a line on the past and request a "new start" in terms of testing my current condition, regardless of the previous tests / positions.
2. I will say that I know my body best, that I have the same continuing symptoms, and more to deal with, and I know best how I feel.
3. I will explain that to get things fully sorted, this might mean more than just a re-run of the standard frontline blood tests for Vit Deficiency i.e. a need for IF, MMA specific tests as well..etc. And I request his support on these
4. I intend to say that I think it's reasonable to refer to NICE guidance etc, and request that he refers to the documents I will provide. I won't outright say he is under-informed 😃
That's as far as my thinking had gotten.
But if that all happens, it would be a better position than I am in now. If not, I will put that all in a letter and hold my ground. Move GPs if needed.
Apologies for going on and on here. I dont think my reply helps you much tbh. Apols. I don't have the depth of knowledge to do that. In fact, I think my response here may be more about me clearing my own thinking.
But perhaps my key message is that each encounter with our GPs needs to better planned and prepared for? More planning less emotion in my case. Looking at winning key steps and outcomes?
I am an easy going person, I don't like conflict. But I am determined to stick to my guns, to stick to the facts, set out clearly what I would like to happen, expect the use the available guidance..I aim to be more logical, bolder and firmer... but not aggressive with my GP..
Hello Nackapan. It was good of you to respond 🥰..and many thanks for sharing your perspective and advice. It's such a tiring and tough battle, and one you would think GPs would be ready to pitch in and help you with. I am going to take a list of "requests" as you say. 👍
It seems that lots of us find symptoms appearing and developing and we do our best to understand/address the situation. But our anxiety and frustration rise up as we do this. My GP seems to think I started with the anxiety (the.. calm down dear attitude? ) and I am emotionally amping up the feelings and symptoms.
Thanks for your reply. And yes absolutely planning is critical to a good GP outcome. I am a bit of an emotional character and so I have to work on suppressing those emotions with the Doctors. Mainly because emotions lead to anxieties and fears that can come across as healthy anxiety.
My issues are also linked early experiences. I lost my father to bowel cancer as a boy and it happened fast, within 6 months. So forgive me, Doctor, if Im a little anxious in our meeting after Ive already been sent for a colonoscopy and had polyps removed, then had a neck tumor and half my thyroid removed within the next year.
When I first went to the GP with genuine B12 deficiency symptoms (palpitations, headaches, low energy and poor sleep--I started to and still do sleep in another room to my wife to try to sleep better). But I was asked 'if I had been stressed lately and if I have a stressful job'.
He did test me for diabetes but when I asked if it could be linked to thyroid he became very condescending. So I stood up and walked out to do my diabetes test.
So of course, why would I fact further humiliation from GPs and a risk of having health anxiety on my records if Ive been told its stress? When I had my surgeries to removed the tumours I asked the surgeon if pins and needles could be linked and he was very confused and said he couldn't help with that.
Then with lockdowns I stupidly felt Id taken up alot of NHS time. Until it was too late. The GP i spoke to when in the pit of deficiency was kind but he didn't really believe me. He said there had been alot somatic issues lately. So already, before Ive even explained and had to wait two days for an appointment, he's making me feel like Im a burden. Or that Ive made it up.
So of course Im tempted to try B12 sublingual since no-one seems to believe me.
And again, forgive me Doctors for having some concerns about my gut.
Its the arrogance of GPs that kills me. And potentially has ruined my health.
Good to unload these things with each other!!! Thanks
In 2019 I had primary hyperparathyroidism before my diagnosis, I had three parathyroid glands removed due to hypercalcemia ( to much calcium in the bloodstream)
I was then diagnosed with hypogonadotrophic hypogonadism ( my body doesn’t produce enough testosterone. Now on injections .
Then my PA diagnosed, and finally last two months MGUS ( immunoglobulin over production of IgG colonal antibodies) and severe spinal stenosis and degenerative disease.
You’ve been treating your B12, which is good. And if you had anemia previously, that might not appear on new CBC tests since your B12 levels have improved — I hear your frustration there. But you can still be tested for what is causing your B12 deficiency.
There are only 2 reasons someone becomes deficient in vitamin B12:
1) They are vegan or vegetarian for several years. We get B12 from meat and dairy (animal products). It takes years to deplete the B12 our body stores from food. If someone is avoiding animal products for years — and not taking b12 supplements — they can become b12 deficient.
2) They have an issue inside their body preventing them from absorbing B12 from food. This happens in the stomach or the intestines.
You said you were avoiding meat for awhile; was it for several years? Did you also avoid dairy and eggs? If you still consumed dairy/eggs, your B12 deficiency likely was not caused by your diet.
It’s great to treat the b12 deficiency. As you know, low B12 is a serious issue and must be treated right away. But your doctor needs to investigate why your b12 was low.
You asked about looking for a common thread. Autoimmune issues are a common cause of B12 deficiency. They also tend to come in groups, where if you have 1 autoimmune issue, you likely have several. Your doctor can do some simple blood tests to check for a few common ones, if they haven’t already:
- parietal cell antibodies (PCA) test: this means your immune system is attacking the lining of your stomach
- intrinsic factor antibodies (IFA) test: if the PCA test is positive, they need to test to see if your immune system is attacking intrinsic factor, which is created by parietal cells. B12 needs intrinsic factor in order to be absorbed in the stomach.
- transglutaminase antibodies (IGA) test: this checks for an autoimmune disease in your intestines (celiac disease), which can prevent B12 absorption.
- h. pylori antibodies test: this looks to see if your body has ever fought (or is currently fighting) a bacteria called helicobacter pylori. If you have more than 0, then that may explain an origin for your b12 deficiency. H.pylori destabilizes normal processes in your stomach and can have long-lasting impacts, including chronic b12 deficiency (and other nutrition absorption issues). If you have any antibodies to h. pylori (even if it says “negative,” but the number of antibodies found was > 0), then your doctor needs to test for PCA.
Those tests are focused on identifying a cause for your B12 deficiency. Even if you have treated your B12 and your levels have improved, these autoimmune issues will still be there, and you can still test for them. These are not all the tests you could do, but they are easy blood tests that should be done to figure out if your low B12 was caused by autoimmune issues.
You mentioned several other health issues. Autoimmune issues come in groups. You’ve had thyroid issues, so your doctor has likely checked your thyroid levels, but did they check for thyroid antibodies (such as thyroid peroxidase antibodies)?
You described some symptoms that align with adrenal insufficiency; has your doctor checked for antibodies to your adrenal glands (specifically, antibodies to the steroids they create, such as 21-hydroxylase)?
Have you been tested for diabetes? The autoimmune type can develop alongside other autoimmune diseases.
If your doctor starts finding autoantibodies that are attacking your organs (stomach, thyroid, etc), they need to do more tests to see what else is involved. Antibodies to your pituitary gland? Antibodies to your gonads (ovaries or testes)?
You are seeking a systemic answer, and autoimmune disease is a common systemic issue related to B12 deficiency. I hope you find answers soon.
I think because there a many potential causes for me, it's difficult to pinpoint the deficiency
No I was not vegan or full blown vegetarian, but I did take a low meat diet for quite a few years. So its definitely a possible contributor.
Then the other thing is that it was triggered by alcohol. As Ive said before, I was not a heavy drinker in recent years but was as a younger man. I definitely at times felt some similar effects to B12 deficiency when having some big nights out - sometimes waking up with numb limbs. And occasionally wondering if Im harming my nervous system.
So when the deficiency happened, I will admit that I did get strange sensations when drinking so stopped for a while. But then I did drink at Christmas and a few weeks after.
What I am inclined to decide on is that the low B12 intake, alcohol use and extreme stress in a job (with sleepless nights and a house move contributing) increased my Homocysteine levels to a dangerous point. That point was Jan 2019, when basically all these symptoms arrived. Without enough B vitamin consumption, my body could not cope with the levels of stress I was facing. This stress increased homocysteine but potentially also weakened my gut barrier.
I say this because, to me, I don't fit neatly into either of those two categories. The deficiency couldn't be solely dietary as I ate dairy, fish and meat about once a week maybe less. But I also do not fit the category for Autoimmune because I self treated the symptoms with sublinguals which is what took me way over the serum range before I got tested. I think I even subconsciously skewed the test because I felt ashamed that it may link to alcohol and couldn't face that reality.
But since Ive forgiven myself for that (I wasnt alcoholic) and recognise that other things were going on here including major stress and low intake.
For me, its all about homocysteine. And this is high when B12 levels are low and alcohol is consumed (probably because it uses up B12 to detoxify). So I was 'running on empty' for the lifestyle I was living and the body gave out.
So, I think this is the reality. And the door has really closed with my GP on the B12 discussion. But I was interested to think about its impact on the other issues and discuss this with the ENT. Alas, there could be a connection, but there might not be. But it does seem to me, from what Ive read, that medical science is totally missing out on understanding B12s relationship with homocysteine levels and the reality that high homocysteine is responsible for many health problems.
Either way, thanks again for your reply and thoughts.
Regarding communicating with the ENT, you seem to me to have laid your issues out quite clearly in your post. I would be interested in hearing what others think, but perhaps you could print out your post and begin your communication by letting the ENT read it.
Regarding B12 deficiency and salivary gland tumor, this link is to the results of a Google Scholar search. If you like, you can browse through the results and see what you can find. In many instances, you can access only the article abstract, but sometimes if you enter the title into regular Google, you can come up with a free version of the entire article.
Yes, absolutely - salivary haptocorrin is key at initial stage for protection of B12 extracted from food (extrinsic factor). I enquired about this after being found to be B12 deficient. My GP put this forward to a senior ENT consultant and he supported this. I have had saliva gland issues (swelling) and related saliva duct problems (strictures).
I found this ENT consultant more knowledgeable about B12 deficiency, severity and range of symptoms and effective treatment than anyone else I have seen in medical practice.
I have asked my Oral Medicine consultant for a haptocorrin test, after reading about research where this was measured.
Thus far they have only managed to find out that serum total B12 minus active B12 levels would give an inactive B12 total. Since inactive B12 and b12 analogues are cleared from the body by haptocorrin, this might give an indication ... but only at a much later stage in B12 transportation. This of course is skewed by frequent B12 injections; my total serum b12 and my active B12 are now both high, and could remain so, even if I stopped injections, for many months.
I cannot do that. It is a regressive step.
Even though my Oral Medicine consultant was once worried about my serum B12 levels and my self-injection frequency, he has now altered his opinion and now believes that my body would not be able to function with less B12, and that tablets would not work.
I am still trying to find a test that will measure the haptocorrin levels in saliva. This has the function of protecting the B12 released from food through the stomach, which makes this entirely separate from the function of later haptocorrin (r-binder) in clearing unwanted useless B12/ B12 analogue from the system.
One might expect this to be a simpler, cheaper test - yet may be unavailable for two reasons: no-one requests it (outside of research) and because given a low haptocorrin level result, there may be no remedial action. In other words, not cost-effective; even though the answer might help you to understand your condition better, if there is nothing that anyone can do to prevent/minimise the effects, there is little incentive to do the search.
That won't stop me asking ... I am in the process of replying to the latest medical report and will let you know the outcome.
- I first had saliva gland swelling in 2012, and was first found to have B12 deficiency in 2016.
- I also had a colonoscopy where a couple of benign polyps were removed, back in 2015.
- I do not have thyroid issues -but have two sisters with Grave's disease.
Life is odd sometimes, you are right.
We can't be the only two wanting the answer to this question.
After some research I want to update/revise my comment on Haptocorrin. It is secreted by the salivary glands, bile and pancreatic fluid. ref : sciencedirect.com/topics/ag... , but the two other sources apart from salivary glands secrete into the small intestine, while it seems that only haptocorrin from swallowed saliva reaches the stomach. So on reflection I agree with Cherylclaire - it seems at least plausible to me that a haptocorrin production defect in the salivary glands could cause a problem with protecting B12 from stomach acid.
Thanks for your interesting reply Cherylclaire. Lots to consider there and yes, that is a very good idea to have a haptocorrin test. I suppose even getting an MMA or Homocysteine is hard enough but this would make alot of sense too.
B12 absorption is so complicated, it needs a degree in itself doesn't it? I think it's interesting to ponder the causality of salivary gland problems. And which came first? Could a salivary gland malfunction/swelling or tumor block production of haptocorrin? Or could it be a consequence of lack of B12 somehow? Perhaps less likely.
Well, Pickle500 , I have now written to my consultant to find out whether a salivary haptocorrin test is currently available - aside from for research purposes.
I have had six MMA tests in all - five of them were raised and the final one had dropped within range. It had taken about three years of frequent B12 injections to get there though. Homocysteine was "normal" however.
In all probability, the salivary gland swelling and saliva duct strictures were not the sole cause of my B12 deficiency problems. I was told that the strictures could have been a birth defect, although I did not have any "hamsterface" swelling until 2012.
I had massive tonsils as a child - GP was fascinated by them ! IF space-invading tonsils perhaps was the primary cause of duct restriction, then wouldn't a developing tumour have the same effect ? So much still a mystery, but may be inching forward.
IF I can find out more, and/or a test is available, I will of course let you know. My consultant is probably too busy to reply, so I might have to wait a few months until next appointment.
Please do, if you find the time. I would really appreciate that. Just at least out of fascination, since there seems to me a clear link there. I also read somewhere that a pleomorphic adenoma can arise from a lack of food intake. And that got me wondering if it's a reaction to a break in the usual digestion process. I.e. I was reaching for processed foods with low nutritional value, not sitting for proper meals, not consuming a healthy 'meat and veg' diet. Too many carbohydrates. So I think there is a chance that the poor diet, plus stress, resulted in a pleomorphic adenoma. And then there's just the question of whether it went on to encourage B12 deficiency.
I think it's impossible to say for sure and it's most likely the diet and stress that set everything off. More and more I read about the need for B12 during times of stress, when enjoying alcohol or a heavy night, and for exercise. So potentially my stores depleted severely and the parotid pleomorphic adenoma was a reaction to that.
I doubt I could convince the expert ENT on that but my curious mind ponders these things, particulary as the causes seem generally unknown. Funny, me too - I had my tonsils removed when I was 5. So I think the ENT area is a sensitive spot for me too.
Your story of consistent injection over 3 years is very encouraging. I also always keep in mind that you were told it can be reversed, just need perseverance and time. That keeps me going when I have those regretful days, so many thanks for sharing.
Yes, I am still convinced that I can get more of a life. Still trying to pinpoint how.
My tonsils, huge as they were, were not removed until I was around 20 ! During my childhood, despite having recurrent tonsilitis, there were many doctors who believed that removal of tonsils just pushed the infections further down - and that it was worth waiting as tonsils diminished towards adulthood.
"But I also do not fit the category for Autoimmune because I self treated the symptoms with sublinguals which is what took me way over the serum range before I got tested. "
This is addressed in the article, "The Many Faces of Cobalamin (B12) Deficiency." Basically, as I understand this part of the article, the authors say that oral supplements raise the serum B12 level enough to put the test results into the reference range, while not significantly addressing the physiological B12 deficiency.
Indeed, thank you for highlighting. After about 5 weeks of sublingual I recognized I was not going to recover and researched that many people relapsed on sublingual after initial success. I recognized that situation in myself and so began injections. And Ive had many since then.I'm inclined to believe I had gut dysbiosis . But I know the medical community is not convinced on that. But it would potentially explain the sequence of parotid enlargement, gut pain and discomfort/heat followed by colonoscopy for polyps, then a thyroid nodule discovery and 1 year later B12 deficiency.
Or, it could just have been driving my levels very low after a stressful few months and by body using up alot of B12 from the liver stores.
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