Covid/MCAS experiences?

[Littledancingtiger]

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 hashis? I am still very much 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.

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 and med 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 on a reduced dose at the moment but it’s nowhere near my normal and struggling to raise back up which I think may be because of the low vitamins/adrenal fatigue 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. 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.

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 hormones and also will look into a functional medicine GP. Regular GP says has now tested all he can, has prescribed gabapentin and ushered me out the door and that’s it basically. I felt like he would keep going and not give up on me when I saw him last week but yesterday after the bloods all came back “normal” he’s basically said this is as far as we go.

The reactions I’m having are really 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.

Anyone else been severely impacted by Covid or developed sensitivities and managed to get anywhere with sorting it all out?

[Dahliasanddaisies]

Hello, similarly I had covid and pneumonia last November and was very poorly. Check out my profile and 1st post for more details. But just wanted to say that I think what helped me get off the floor (I really thought I was dying/having a nervous breakdown)- took 5 months off work

- rest, rest, rest (very boring but necessary)

- Acupuncture

- Anything to calm nervous system - yoga nidra, meditation etc.

- No stress as much as possible, give up everything that's not essential for a few months

Can't comment on your vitamins etc but I spent alot of money on seeing various people and trialling HRT etc but none of that helped but I know how desperate you feel for something to help. Take care

[FoxyTed in reply to Dahliasanddaisies]

You are so right, great advice and yes it’s dreadful when one is suffering

[Judithdalston]

sorry had started a long reply but lost it while just searching something for you! Have a look at the Long Covid Podcasts run out of Uk by Jackie Baxter she has c140 episodes talking to a huge range of world wide scientists, drs, therapists, long haulers etc…some I find rather too alternative mumbojumbo but you’ll find two functional drs in Uk : Myehill and Tina Peers who did a lot with ME/ chronic fatigue/ fibromyalgia/ adrenal fatigue/ MCAS prior to Covid and added LC to their support. I am 4 1/2 years into LC and where I live find it is impossible to find anyone who recognises LC…the LC clinic was purely about breathing techniques. So I have had to be referred to individual depts who test/ scan then discharge( or more accurately don’t even bother to discharge just forget), sometimes without even speaking to a dr.on a phone. So had 4 ecgs, 1 echocardiogram, 2 chest X-rays, full blood tests and nothing found except acknowledged high BP/HR ( had been put on and left on 5 Hypertensive drugs) and finally Jan 24 got referred outside Trust 2 hours away to Falls consultant with tilt test table who confirmed bad postural hypotension on standing. But other than some BP drugs being removed, got no help, discharged to GP who just insists high HR is a result of overmedicated hypothyroidism! During the last 4+ years done lots of research and DIY treatments with supplements ( take recommended Forum vits/ mins anyway): currently trialling high dose B1/ thiamine as some evidence that causes LC postural hypotension. Just had vit D tested and came back as 78 but that is with 8,000 iu with K drops almost daily ( in part reflects awful thick cloud summer skies in north Cumbria this summer). Other tests eg B12/ folate thru Monitor my Health have failed to be tested two tests in a row over last fortnight, and Gp who did ‘full blood count’ didn’t bother to do them this week despite being asked! It’s a slow go, hope you get somewhere much quicker….

[Sparklingsunshine in reply to Judithdalston]

Wouldnt it be wonderful if patients with rare, unexplained or complex medical issues could see a panel of specialists with a wide range of specialisms and get tests and a diagnosis, instead of going from pillar to post.

There was a BBC show a few years ago that did exactly that. What a shame though that it took a tv show to do some thing that medicine should be offering. It takes years for some patients to get diagnosed, that's years of lost opportunities you never get back. In some cases people give up.

There was a Dutch lady who caught severe CFS and went from being very healthy and active to bedbound. Sadly she decided to end her life via assisted suicide in the Netherlands. It made me extremely sad to read what she went through and how hopeless she felt. Surely we can do better than breathing exercises.

[Littledancingtiger in reply to Judithdalston]

Really sorry to hear of all your struggles too. It’s truly horrendous situation to be in.

It’s so so difficult when things like this go wrong as the NHS just doesn’t piece things together or offer very much at all. If your standard bloods are “fine” then out the door you go.

I haven’t even been offered any kind of referrals to check into why I’m having widespread nerve pain nor any investigation into why my ferritin is dropping so crazily. I’ve just been told post viral stuff is “hard”.

I look incredibly unwell which has been pointed out by family members yet my GP notes say things like “blood results fine but she’s not convinced” and she is “tearful and has low mood, is anxiety playing into it”.

I know the waiting times would be incredibly dire but to just be shoved out the door with drugs and no referrals on anywhere isn’t an answer.

I’ve called again today due to severely low mood but am now worried it’ll all just be blamed on that when it’s the physical issues causing the low mood.

[Judithdalston in reply to Littledancingtiger]

I think you’ll have to push for referrals…. unfortunately lots of research to try to find which symptom you want to concentrate on, then find the best match specialist probably out of your area who will , hopefully, communicate back to GP. Sadly not what I thought the NHS was designed for! I presume you have had your B12 tested?

[Littledancingtiger in reply to Judithdalston]

I was hoping for at least a neurologist referral due to the neuropathy, I visited a&e with it when it started up due to the severe pain and so is on my notes that they suggested a referral.

Yes I have pernicious anaemia diagnosed for some years so unfortunately not the cause of whatever is going on.

[Judithdalston in reply to Littledancingtiger]

Unless LC effects B12 absorption etc…presume you go on sister PA site too…I know B12 problems have been identified with LC but not taken that in properly as not seemed relevant to me ( although expected B12 blood result would have been good)! Have you also tried the Facebook Long Covid Support group…has two sub branches originally Uk based but now( cos good) lots of US etc people too. One branch is support / personal experience, other research based. Bet you’d find B12/neurological match there somewhere if it’s LC related.

[Littledancingtiger in reply to Judithdalston]

Thanks I will look at the Facebook group.

The B12 thing has definitely been a minefield for me, I felt well on just the shots for years then awful after heavy antibiotics usage and had to figure out an increased regime, did that and felt really well on a mix of hydroxo and methyl every day for 4 years with co factors and was doing that when I was struck down by all this… it’s definitely like the balance has gotten upset/off track somewhere.

I wasn’t reacting strongly to methyl B12 and now I am so something is definitely upset/missing/has changed in me!

[Judithdalston in reply to Littledancingtiger]

Have seen mention of methyl upset in LC in US patients who get such things more easily tested on insurance!

[Littledancingtiger in reply to Judithdalston]

That’s interesting….

GP recommended running DNA testing and looking at methylation etc. but obviously all going to be private and not via him.

We have a decent amount of savings I can tap into to try and get myself well so I am very lucky in that regard but it’s just knowing where best to put it. Don’t want to be chasing red herrings, wasting money and getting nowhere!

[Judithdalston in reply to Littledancingtiger]

I looked at the DNA testing related to methylation about a year ago…what a minefield. Gary Brecka the US web guru was popularising it as ‘curing’ everything/ everybody by using his DNA testing ( from memory about 800 dollars a throw) plus ‘cure’ supplements …but his science didn’t hold up. Looked at cheaper Ancestry ( there are many more) type DNA testing but although some named genes are in results, they group the likelyhoods of having x disease etc in groups that are difficult to unpick. But you’ll find methylation discussed in the sites I suggested before. Gp a bit cheeky suggesting it without further guidance!

[TiggerMe Ambassador]

Have you got some results to show? Has your GP checked your blood cortisol level... well worth doing a 4 point saliva test as it certainly sounds like your adrenals are exhausted.

Have you been taking a lot of zinc as this will lower your copper levels?

Which form of B6 had you been taking? Have you checked your levels? It could actually be that your levels are low after taking it for so long as if you have the form your body can't deal with it actually blocks uptake

[Littledancingtiger in reply to TiggerMe]

It was actually a blend of P5P and pyroxidine which I’ve since read can be a big big mistake!

Morning blood cortisol was checked. I will do a saliva.

Cortisol levels

[TiggerMe Ambassador in reply to Littledancingtiger]

I only found out having done an Organic Acid Test that mine was low due to pyridoxine in my B complex so swapped to P5P and perked up considerably

I've not had covid but I recognise all of your symptoms having had years of low fT3, vits, mins and exhausted adrenals

Heme iron is the easiest form to raise/ maintain ferritin levels and thankfully doesn't cause any digestion issues.... healthunlocked.com/thyroidu...

[Littledancingtiger in reply to TiggerMe]

Meant to add not a lot of zinc no but there was a very low amount in my multi only around 3mg but no copper in it again a mistake!

[TiggerMe Ambassador in reply to Littledancingtiger]

It seems we fall into two camps with low zinc / high copper seeming to be the most likely but that's no good to you if you are in the low copper camp 🙃

Honestly since joining this forum I feel like I've done a full degree in thyroid health... so much to learn and so many pitfalls... but it does come good in the end 🤗

I found adrenal support made a big difference and getting HRT levels right and adding in testosterone 💪

Also taking your thyroid hormones when your cortisol levels are in the best place during the day or night

[Littledancingtiger in reply to TiggerMe]

Thank you, hoping thyroid doc can help with some of this at least. I have booked into one off the recommended list. Whilst I wait I will definitely do some more testing. I can definitely do some of the MCAS testing and the adrenal profile.

Still struggling to tolerate any meds and supplements at the moment though as can kick off the fight or flight and/or nerve pain. It’s so up and down though. I kept thinking for sure MCAS myself as some seem to develop that after Covid but my nerve pain and reactions are very up and down and not really consistent from day to day, so I could do one thing one day with one result and the same thing another with a different result which I’m not sure would be right for “true” MCAS.

I seemed to feel better initially after stopping B6 then I hit a period of feeling considerably worse 10/10 pain for a while usually in the evenings now it’s seemed to lessen again to be more up and down. So it’s random. That does seem more consistent with what the B6 tox folk seem to report.

It was only after reading lots of accounts of people’s issues with B6 that I discovered they were being troubled by tolerating meds and supplements for some time after getting “toxic” on it and the whole worse before better scenario that seems to happen once you quit so I wonder if it’ll just stop and slowly right itself eventually once I’m out of the 6-8 week “worse before better” period that’s mentioned in the limited research data I can find. I’m in week 6 of quitting.

I’ve also read that Covid can cause severe adrenal fatigue for people and neuropathy though plus the MCAS and the other long list of lovely symptoms so it’s a lot of overlap with the two with what could be going on with me and certainly hard to figure it all out.

I’m certainly trying desperately to do all the things to put me right and really appreciate people on this forum trying to help, advise and sign post it’s very nice to have folk to talk to who get autoimmune diseases are hard work at any rate!

[TiggerMe Ambassador in reply to Littledancingtiger]

Could it be histamine intolerance? Took me years to work out that one! So now I avoid anything aged, leftovers and histamine releasers like avocado and spinach, game changer 😅

I find subligual's where possible offer better uptake with less gut issues.

Before I tried hydrocortisone tablets at a low dose to try and give my adrenals a hand I bought some 1% hc cream and was amazed just 1cm of this could do, effects lasted about an hour but convinced me it was the right route to take

Yep, finding your clan is a massive relief and so helpful 🤗 It saved me

[TiggerMe Ambassador in reply to TiggerMe]

Should say I also can't tolerate dairy, barley and nightshades, food intolerances are a biggie

[FoxyTed in reply to TiggerMe]

Tigger re the copper, how do we add that in? I take seeking health methyl free B complex as can’t tolerate methyl’s, I take zinc P 30mg, Vit C, Vit d and mag glycinate but I have wondered about copper? Any thoughts? Tk u

[TiggerMe Ambassador in reply to FoxyTed]

There are supplements with the correct ratio like amazon.co.uk/gp/product/B07...

[FoxyTed in reply to TiggerMe]

Tk you

[FoxyTed]

Just to ditto Dahlias reply, rest is sooo important. Covid is a nasty beast😡 your symptoms are post viral affecting the nervous system, so try and do things to calm this💐

Best wishes

[Littledancingtiger]

I just had my appointment with a doc off the thyroid U.K. list. Sex hormones are fine. Cortisol is elevated throughout the day. Follows the pattern it should I.E: highest in morning and lowering throughout the day but yes elevated throughout the day at all times.

Doc is going to work with me on getting my meds back in the right place. Suggested I need to go low and slow and have patience.

Got a few free “discovery” calls lined up with functional med doctors/nutritionists.