Hi all my situation is very complex but tl/dr has anyone had luck with any doctors, functional docs etc. after severely crashing out from Covid or experience with MCAS, low vitamins and PA? I am still trying to dig myself out of the hole but unsure how to even begin to fix all this.
GP has mentioned possible MCAS/adrenal fatigue but that this isn’t recognised by NHS and I need functional med help to piece all of this together, will need to go private as beyond their help. Partner says we can afford to spend on it but I don’t want to throw money down blind alleys as there’s a lot of sharks out there and we need to be careful.
My ferritin won’t stop dropping since Covid, it’s usually 70-90. It dropped to 35 and has since dropped to 23 in only a matter of weeks.
Range begins at 10 but I know 23 is an appalling level.
Copper came back 14.58 with range 12-26, ceruloplasmin 0.31 with range 0.23-0.64. This looks kind of low too.
I’ve been trying to supplement iron alongside vitamin c which seems to pull me out of feeling extremely weak and able to get me out of bed but is not the total answer to everything that’s going on overall. I’ve become extremely supplement sensitive during this time, my usual supplement regime is giving me major issues - causing nerve pain in body (zaps, pins and needles, burning skin) and fight or flight adrenaline symptoms. It feels like everything has tanked and now I’m sensitive to it all and body is stuck in fight or flight mode and thinks there’s a threat when there isn’t one.
GP scratching head at low ferritin as FBC shows normal. Just mentioned heavy periods or a potential GI bleed, can supplement “if I like” but no real help offered. I don’t have heavy periods and this has all happened after Covid.
I’ve been struggling to tolerate my usual stable dose of thyroid meds well too since the crash along with my other supplements. I experience “fight or flight” panic, racing heart symptoms to them too.
I’m also very worried about B6 toxicity as this seems to make people sensitive to other supplements when it happens - though it’s not very well understood, does anyone have experience of this? I was taking 10mg B6 in a multi for 4 years before this crash and very stable. I always assumed 10mg or less was safe but after reading numerous other people’s experiences with it seems a fair few (not all) have had issues with this amount or less when they continually take it as it can build up in nerves and not be excreted the same way as the other water soluble vitamins.
I stopped B complex 6 weeks ago in case B6 was messing with me.
The nerve pain stuff is very up and down now at the moment. Better days or moments then really bad days again.
Suspect adrenal issues/low ferritin partly behind some of what’s going on here but not answer to all.
I’m very pale, weak and losing hair with neurological symptoms/ mental confusion and severe mood swings - I have pernicious anaemia and usually injections were keeping neuro symptoms at bay but im also now reacting very strongly to those. I’m becoming worried I’ll end up in a really bad way as I need all this stuff to keep me going but body is hypersensitive to it all. I was so well for 4 years working full time and in such a good place until now and now can barely get out of bed, shower and can’t leave the house.
Have booked in with a thyroid specialist to do more testing to look at adrenal fatigue and sex hormones and also will look into a functional medicine GP. Regular GP says has tested all he can, has prescribed gabapentin and ushered me out the door and that’s it basically.
The reactions aren’t really traceable - they are very up and down seemed to hit a bad peak a few weeks back and now it’s more on/off and up/down. My family have become convinced it’s B6 toxicity rather than MCAS and Covid has compounded the problem as there seems to be a “worse before better” period with that 6-8 weeks after stopping B6 followed by a slow gradual improvement.
I don’t know how to get myself better if I can’t take the things my body needs to get better and I don’t know where to turn. Feeling incredibly low about it all. I spent most of yesterday ringing mental health hotlines as I was by myself and so so low with it all.
Anyone else been severely impacted by Covid or developed sensitivities and managed to get anywhere with sorting it all out?
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I actually crashed stopping B6 around the time of getting COVID and then later read in a peer reviewed paper that B6 is really important for the methylation cycle, which I think COVID throws off for me. Have you come across this paper?
Have you considered the active form of B6 (pyridoxal-5-phosphate)? From what I understand, B6 toxicity is actually a weird combination of overload and deficiency as the cells can get overwhelmed by the non active form and stop being able to process it, and that technically shouldn’t happen with pyridoxal-5-phosphate. Do read that up for yourself though in case I’ve understood that wrong (and I’ll keep trying to find the source I got it from). I also suspect I got that weird combined overload/deficiency thing for folate from folic acid, and am doing much better on folinic acid now.
For a few reasons (weird response to folate, comorbid diagnosis of hEDS) I ended up getting my MTHFR gene coded and my nutritional therapist said it was the results she had most seen that supported the reported issues. But there’s also a lot of cr*p out there about MTHFR so you have to be discerning about what you listen to. The report gave me supplement suggestions, I was already doing most of them but they did also stress the importance of B6.
Here’s something that might be helpful for understanding B6 toxicity (my emphases).
“In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5'-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.”
I also had a terrible ride with folate /folic in 2019. Prior to being unwell from taking a load of antibiotics for chronic UTI infections I had taken methylfolate for years to keep my lower end folate levels high in range. GP recommended picking up a supplement and the first thing I grabbed was 400mcg jarrow methylfolate. It did what it needed, kept folate high in range. Didn’t really know the difference back then. Felt no adverse issues from it.
Unfortunately it was the reduction in my B12 injections that then made me very sick. I started to go yellow around the mouth, pale, weak, tired, dry hair, neuropathy pieced that part together myself and felt much better increasing the jabs.
When I tried to correct things and “learn properly” someone pointed me in the direction of the B12 fb groups and said they had the holy grail of advice and I needed to follow it. I attempted to follow the fb groups advice of 5mg folic acid for alternate day injections but couldn’t tolerate it. In fact I couldn’t tolerate any folic tabs at all as they gave me severe stomach issues.
My continued attempts at getting 5mg into me then gave me very serious issues akin to serotonin syndrome and a very bad B2 deficiency! It was only then I learnt I didn’t need 5mg I was fine with what I was taking before that I realised I’d seriously hurt myself for no reason. Unfortunately then it was too late and I had to let everything calm down. This took quite some time.
I had to stop the lot and reset. My folate levels stayed high for some time so it was fine to not take any for a while and it was nowhere near as bad as what’s happening now. I was able to get back on all medication and other supplements quite quickly after this adverse reaction.
I then dug myself out the hole, started on a multi felt really well and now boom 4 years later something else terrible is happening although much worse this time! B6 confuses me so much. I’d always read 10mg or less was safe (nhs website also says this). So many people take multis with no issues. So I’m guessing it’s some kind of issue with me. Maybe the gene testing is worth doing although not good if I don’t know how to use it or dig out of this. Some of the tox groups claim to be tox off P5P so it’s just so confusing to me.
I’m thinking maybe a cofactor issue downstream but I’m so lost digging myself out of this again when I’m now so intolerant to everything I try to take atm and don’t even know where to start. I’m not even sure which functional med folk I could even get in to see that are familiar enough with all this.
Best not to follow protocols described as the "holy grail" which cannot be explained or justified by those propounding it.
10mg of Folic Acid is under the EU tolerable upper limit although EFSA recently revised downwards very significantly the B6 Upper Limit, to 12.5mg a day. It does seem like the P5P/PLP form is much less likely to cause adverse effects.
You are probably aware that PA, or rather the autoimmune activity that causes PA, results in a reduction (or in worst case, elemination) of stomach acid - apart from causing digestive issue in general it also makes it a lot harder to absorb iron. Rexz may have some good advice in this respect.
Going by your ferritin level, it seems like it would be best to get your iron into a healthy range (with professional advice as needed) before looking into more esoteric issues that genetic testing could potentially lead you into.
Thank you! I’m currently focusing on the iron first and foremost and this seems to be digging me out of feeling weak and terrible. I know there’s a link between PA and loss of iron and I’m a bit worried I’ll also need iron infusions but I’ll need to cross that bridge if I can’t raise it.
My ferritin level was always fairly good before this Covid/potential B6 drama….
Well aware not to take “holy grail” Facebook advice as gospel now! That absolutely wrecked me back then. Unfortunately I was so naive at the time and just wanted desperately to get better.
I now know if I’d have just kept doing what I was doing things likely would have worked out perfectly fine.
It’s my intolerance to my usual regime of supplements and meds that is making me freak out at the moment as I don’t know where to start with it all and how to put it right. Some of the things I was taking were obviously keeping me really well and I know I need some of them like the B12, folate, vitamin d etc. probiotics… thyroid meds.
The B6 issue is freaking me out a bit as well as I had not had a break from using it and that seems to be recommended I didn’t really know it could cause much harm and just assumed I would notice quickly if it was but I have a lot of issues which are up and down and could be mistaken for other things, I took the multi consistently as I had checked upper limits recommended in U.K. for various nutrients to make sure I wasn’t inadvertently poisoning myself with anything. As 10mg was recommended limit I thought I was being safe/cautious.
I’m wondering if the loss of iron has caused more dramas than I’m giving it credit for though. I believe I’ve read you can need good iron levels to tolerate thyroid meds and you need iron for B12.
The adrenal fatigue thing I never completely got either but I’ve definitely been stuck in fight/flight/panic since this all happened and it’s a response my body is doing rather than something I’m doing myself.
Just feel very much at rock bottom with everything and wanting to put it all right but not knowing where to begin with it. Like I have all the ingredients for a cake but I keep failing at making the recipe!
You were absolutely being safe and cautious with 10mg B6 and I think its unlikely even with the revised guideline that this dose would have caused your issues. That said, if I was supplementing above the RDA of B6 I would trend towards using the P5P/PLP form as previously mentioned.
Remember that with your ferritin at 23, you need to deal with that before you attribute issues to anything else. Until thats sorted you won't have a clear picture of what's causing what.
I would not underestimate Iron. Like B12 and Folate it as an essential micronutrient without which we cannot survive. Iron functions in many different processes, here are some selected from the "Advanced Nutrition and Human Metabolism" textbook:
* Hemoglobin (carrying oxygen to cells seeme useful....)
* Electron Transport : ATP Production (thats the main energy currency of the body)
* Destruction of bacteria, viruses and microbes
* Thyroid Hormone Synthesis
* Carbohydrate metabolism
* DNA Synthesis
This list is not exhaustive but like B12 and folate, many critical systems in the body depend on Iron.
I wouldn't focus so much on supplementation - its always better to get what you need from a healthy balanced diet but simultaneously deal with any underlying issues that are causing poor absorption that is working against you. Many people with PA take betaine HCL with meals to help digestion - this isnt just about more comfortable digestion but more importantly about helping to ensure good absorption takes place. Others can provide more useful advice on this.
Once you dial these things in and your blood levels are looking healthier, you will find that the homeostasis mechanisms of the body are far more powerful and effective than anything we can do to try to get the right "balance" or "mix" of the right type of supplements.
Supplements are needed for specific cases in correcting deficiency or where certain nutrients are lacking from the diet or not being absorbed. But a good diet is much more likely to contribute to long term good health than a whole cupboard of carefully selected supplements. Supplements have their uses and I use plenty of them for specific use cases but their overall value in contributing to good health is often overestimated.
If you have macrocytic anemia as a result of B12 deficiency, iron stores may be briefly drawn on at the start of B12 deficiency treatment as new blood cells are created to replace the defective ones. But this is a very short demand (matter of days) so is not an issue for those injecting long-term. There would not be an increased demand for iron per se just because a lot of B12 is available, when self-injecting for example.
Thank you - some years ago I did used to use apple cider vinegar/lemon as I had read this was good for digestion. A lot of these things I used to do have fallen by the wayside.
My overall digestion seemed to be ok until very very recently but… things can always change especially with PA.
My diet is really very good and there’s plenty of high iron foods in it so you may well be onto something there. Thanks for this, it very much gives me something to look at.
Just to further support your comment about Betaine HCL, I’ve been taking this for several months and if I forget it for just one day you can really tell the difference to the constitution of my poo! So it’s evidently doing something.
Someone has already mentioned the Cambridge Iron clinic (who also specialise in B12) but with your ferritin at that level, I’d suggest looking into it. It’s a private medical clinic rather than functional medicine but the doctor knows his stuff, I felt very validated by it all and it also formalises a lot of our more tailored protocols on NHS records, which was really important for me.
I can ask if my nutritional therapist is taking anyone new if you’re interested, although she’s just got another full time job so she might not be taking new clients.
when I first got Covid 4 years ago I developed all my pernicious anaemia symptoms. Until recent’s year I didn’t get any help. Went private to Cambridge blood clinic and was diagnosed. I was getting significantly better but just 3 days ago I tested positive for Covid again.
Covid is known anecdotally (there isn't any hard data yet - it will be years) to crash hormones and certain nutrients. Certainly for me, three times now it's crash my oestrogen (I have no ovaries on HRT) and my folate, vitamin D and ferritin. I had to blood test, increase what I'm taking and then retest. It has taken 3-4 months each time to normalise.
The whole B6 thing there is no clear answer but I'd encourage you to use common sense - if you don't have high levels on a blood test and no strange neuro symptoms, and you're not taking more than 10mg a day (with a break for a month every six months), then I wouldn't worry. You can go down a rabbit hole with this stuff.
I'd also consider retraining your nervous system with something like DNRS/Gupta and re-toning your vagus nerve with things like breathing, yoga, massage, etc.
And look into H1 and H2 antihistamines to calm mast cells, or vit c/quercetin, or both.
Dr K at the Cambridge iron clinic - I had long covid and if you google Adelina Chalmers you can read her story. Also worth getting, in addition to his help, proper nutritional advice from a registered dietitian or nutritional therapist
Thanks have contacted Dr K this morning and he’s asked to see labs. I struggle with dieticians/nutritionists and would prefer a good strong recommendation that’s helped someone before doing anything as I’ve seen some terrible people privately who didn’t help at all and wasted a lot of money that way. I dug myself out of issues before instead but this time it’s just beyond me.
Hi, excuse the delay, have a mountain of things to do, including help an 84 year old with a foggy brain. Ok. When I was confirmed with Neuropathy, it was by a locum not my usual quack, who had ignored me twice in over a year. I then saw 2 Neuros, 1 a specialist, but they both failed to tell me what was wrong, how I could put it right or get rid of it. I was on 2 tabs 3 times a day, then, after 3 years I up it to 3 tabs. I read the leaflet, and it said that it was a painkiller, and you can take up to 36 tabs a day, 3 x 12, who wants to take 36 tabs a day.
So unfortunately, I have to agree with many conditions on this site, that we can all suffer differently, but hopefully, someone might be more helpful. Good luck.
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