Crash after Covid? : I’m really... - Pernicious Anaemi...

Pernicious Anaemia Society

33,371 members•24,568 posts

Crash after Covid?

9 months ago•25 Replies

I’m really struggling to balance my body back out after having Covid and so so puzzled. Not sure why this has happened or where to go with it next. Has anyone had a really bad crash after Covid?

I’m diagnosed pernicious anaemia and hypothyroid Hashimotos.

I had been in the same routine with supplements and thyroid meds since 2019 and was doing really well until I got Covid in May.

I was diagnosed pernicious anaemia many many years ago at age 20, I’m 34 now. I hit problems in 2018 when my injections were spaced out from 8 weekly to 12 and after finishing a long course of antibiotics. My face actually started to turn yellow. I started to SI every other day and by the end of 2019 I had really turned things around and healing continued so much so that I thought it was all fully behind me. My appetite returned and I put much needed weight on.

I even managed to find a new more demanding job last year and we moved to a bigger house.

I was SI hydroxocobalamin every other day and just carried on doing this as it seemed to be working out fine, multi vit daily, plus extra Vitamin D3 as D3 levels were low and a small amount of extra magnesium. Tested my levels semi regularly ferritin, folate, vit D and thyroid.

This combo worked really well until May this year.

After Covid in May I seemed to go downhill really fast, firstly bad stomach ache and reflux, then adrenaline and dry mouth/ dehydration as symptoms. Peeing all day long. Jittery and wired.

Thyroid levels checked as first suspected that was off but just a slight decrease in T3 level really my only change. And certainly a level I’ve had before without having all these symptoms.

My supplements seemed to be making these symptoms worse. So I quit taking all my supplements hoping that everything would calm down a bit and dial back and I could then reintroduce. Maybe the sudden stopping has has been a shock to the system and caused things to become worse?

I’m now experiencing neuropathy (body burning, sore tongue, back feels like it’s vibrating) and can no longer sleep. My face is pale, my skin looks a mess with spots popping up on my face and back. It’s like my B12 has simply stopped working and the balance I had achieved has completely gone out the window.

I keep winding myself up trying to get to the bottom of it and float different theories around to my partner like B6 toxicity as there was B6 in my multi and that comes with a whole host of symptoms. I thought I was safe with that as it was less than 10mg but who knows. There doesn’t seem to be any reliable testing for toxicity and it’s argued over (you can get a b6 blood test and have high serum b6 but as this is rarely ever tested loads of people could have higher b6 serum and be fine and plenty of people take multi vits without testing b6 levels) and no one really understands it. I just made sure I kept under the recommended 10mg. The treatment for that seems to be just to stop all b6, wait and it takes a very long time. People claim it can be worse before better etc. Would it have really taken over 4 years to become toxic? My partner keeps insisting I need to add supplements back in as things are going downhill and he wanted me to restart my multi but I’m too afraid after winding myself up about b6.

I know there’s no doctor out there that will take an interest in any of this so I’m feeling totally stuck and on my own. I had all this before when my liver results were off and my face was yellow so I’m panicking quite a bit. Managed to continue doing some work at home but I won’t get away with that forever. I’ve managed with a few sleeping tabs I had from years back but these are running out too and GP won’t give more they were always loathe to give them.

Not really sure what to do now… adrenaline has dialled down so I’m no longer peeing all day long and my stomach has calmed but the sleep and neuropathy is a huge issue. When I do manage it it’s like little 20 minute cat naps and I’ve stopped being able to dream. Brain feels wired. I had terrible insomnia on and off before I was diagnosed with pernicious anaemia or my thyroid condition.

Sorry I’m sure no one has any idea what’s going on here but I’m pretty desperate so just reaching out wherever I can for any ideas or if anyone knows any kind of doctor/nutritionist etc that could help.

Written by

Littledancingtiger

To view profiles and participate in discussions please or .

Read more about...

25 Replies

•

Nackapan9 months ago

I was ill for 5 weeks after getting over covid itself. Then still not back 'on track ' for a fes more weeks.

So I imagine its nothing to do with your supplements .

If anything you need them more

I needed a higher frequency of b12 Injections for a while too.

I also found antibiotics for dental work set me back too.

Try and treat it as set back you will recover from .

It's only July uf you had covid in May .

Our bodies just don't bounce back with dealing with ongoing chronic conditions as well as anything else.

Hope you can get time off work to recuperate properly.

Stay hydrated with soups and broths

Little and often regular meals

JHEW08369 months ago

I’m so sorry you are having a rough time recovering from COVID. COVID is what sent me into B12 deficiency 2.5 years ago. I’m still trying to get my body back in balance. I have had many of the exact symptoms you speak of. The jittery feelings (like stuck in fight or flight), wired but tired, reflux, nausea, loss of appetite, tingling in hands and feet, chronic muscle tension in legs, I could go on and on.

I do think COVID depletes our vitamins and nutrients by attacking our digestive system. I had no digestive issues or vitamin deficiencies prior to having COVID. I think you need your supplements but I totally understand that your body is in overdrive and your supplements probably exacerbate that. I have the same problem. I have to just start by taking the lowest dose and work my way up. If it’s too much, I dial it back again. I would also recommend a probiotic if you aren’t already taking one. That has helped me tremendously.

Littledancingtiger• in reply toJHEW08369 months ago

Thank you. Yes you’ve got the exact same symptoms as me.

What did you find that helps with the wired tired jittery feeling? And yes I find whatever I put in my body at the minute it seems to go crazy.

JHEW0836• in reply toLittledancingtiger9 months ago

I think what has helped me the most is a daily mineral supplement (my ferritin level is now around 100, whereas before it was in the 60s), more frequent B12 injections at every other week, and the probiotic that I take daily. I have just added a small dose of methyl folate that I seem to be tolerating well, but only taking every other day. I still have days where I feel more jittery than others and I am really baffled as to why. It’s not nearly as bad as it was though.

MrsTuft9 months ago

Yes covid can set us back. I’d up my B12 regime, and check all other nutrients are okay.

I’ve had Covid set me back when I was doing well three times now. SI twice a day helps. My folate vitamin D and iron also crashed due to Covid so I’ve had to address that too.

Like it wasn’t difficult enough eh?!

I don’t know what biological sex you are but Covid can crash hormones too - I also had to up my HRT for three months then lower it again to get any sleep. Plus it can triggers histamine issues so for me antihistamines h1 and h2 help.

Nackapan• in reply toMrsTuft9 months ago

Goodness. 3 rounds of it .Interesting about affecting hormones .

Makes sense though.

MrsTuft• in reply toNackapan9 months ago

In menstruating women it can stop periods temporarily. In women like me with no natural hormones as ovaries removed, on HRT, it can crash oestrogen levels by more than 2/3rds for about three months ish. There is no data to explain this but my doctor said that the theory is that it blocks the oestrogen receptors temporarily. It’s been tr absolutely worse thing. - and yes three times now!! Gah 😫

Nackapan• in reply toMrsTuft9 months ago

The menopause was thd trigger for my B12 deficiency/pa

An oopherectomy 2as my mums trigger.

Starting menstruation my daughters .

Just the other way round ??

MrsTuft• in reply toNackapan9 months ago

Yes having total hysterectomy was the beginning of mine getting a lot worse too!

Littledancingtiger• in reply toMrsTuft9 months ago

Thank you I’m female.

MrsTuft• in reply toLittledancingtiger9 months ago

Covid does weird stuff to hormones which can make you feel awful and unable to sleep.

Gobbozoid9 months ago

so I developed all my issues 4 weeks after having covid. Extreme urination being the worst one. Covid creates a cytokine storm in the body, in my case the bladder. I’d love to know how you got your bladder to settle. I’ve had 4 years of it meaning I can’t really go out or enjoy anything.

The Cambridge blood clinic think it’s the lack of b12 I got diagnosed as PA following Covid. At first the b22 cured me for 6 weeks. Now I have been doing eod for 3 weeks and feel just as bad as before I started. They tell me that is reversing out.

I am deeply tired no matter how late I sleep in and honestly have no real life. No energy and have to try to feign normality for the benefit of the woman I love.

There is also a condition called Covid bladder that could be responsible.

I am happy to chat if you want as I think we both are in the same boat a bit.

Littledancingtiger• in reply toGobbozoid9 months ago

It’s interesting you say 4 weeks after. When I actually had Covid I didn’t feel too bad initially. It was after a few weeks things really started to go downhill. I honestly feel like I’m stuck like this. Happy to pm.

Gobbozoid• in reply toLittledancingtiger9 months ago

Feel free. Yep I thought I could wait it out and be ok. 4 years on just as bad then they say I have PA. I need this to work. It’s early days first month of treatment but I felt better awhile back after just 6. This time it’s taking way longer but people keep say it’s reversing out.

topazrat9 months ago

I had Covid a couple of weeks ago and I'm still very tired. My partner had it at the same time and he's still not back to normal yet and he is otherwise healthy.

It was around 6 weeks last time before I felt almost back to normal, so I'm expecting it to be the same this time around.

We're away at the moment, and our usual long walks along the coast path have been replaced by gentle strolls on the beach and then enjoying a picnic and people watching.

Nackapan• in reply totopazrat9 months ago

Glad you well enough to get away .Sounds relaxing

MuppDog9 months ago

I also had a post- covid crash this winter. It impacted my b12, and my iron (ferritin). All my b12 issues are back on track, but still working on the iron

pramela9 months ago

I had covid back in 2021 and since then have been on fire, doctor has no idea how to treat it. I have looked this up on Dr Google and apparently there is a gland or something in your brain that gets affected, this controls your body heat and if this goes haywire then there is nothing you can do. I just sit or lie in bed, no exercise or no movement and I start to sweat. It is driving me nuts, husband is freezing cold even on a sunny day due to his meds, so it's an ongoing battle to get myself cool. I also am more tired than normal and my loss of words and forgetfulness is worse.. I feel like I've gone backwards to when I first was diagnosed 20 years ago no matter how many times I get my injections, so I just soldier on.

MoKayD9 months ago

Here is my B12/Covid story. In May husband and I came back from our vacation in Greece with Covid. I had read an article that said people with long covid have lower levels of some vitamins in their systems such as D, C, and the B vitamins. With that in mind, I gave myself a shot of B12 and started taking my multi vitamin the next day. It could just be a coincidence, but I started feeling better the day after the shot and was pretty much over Covid within a couple of days. My poor husband suffered for three weeks and had to go to the doctor who gave him 4 prescriptions. I offered to give him a shot of B12 but he refused. Maybe Covid wipes out vitamins from our bodies.

bookish• in reply toMoKayD9 months ago

You did the right thing. I also increased my B12 but was still on oral and it wasn't enough although I took a very large amount. As well as hitting blood sugar control and possibly thyroid function, covid may affect one carbon metabolism, reducing availability of methyl groups while increasing need for them sciencedirect.com/science/a... Now I'm on injections. Cheers

MindfulSquirrel• in reply tobookish9 months ago

I was coming on here to post that exact same paper. I’m in a similar position to the OP - a recent COVID reinfection last month has completely thrown my balance, and I’m beginning to suspect it’s because COVID throws my methylation process. Though oddly enough I was on a B6 break and restarting it was the most helpful thing I’ve found these last few weeks, and I did that partly based on this article.

ClareP59 months ago

hi, when I had covid it it completely depleted my B12 again and I injected every day til my symptoms went away. I was shocked it happened so fast. Good luck with your recovery.

PaintLadie9 months ago

I went through the same thing about a year ago after catching covid for like the 3rd time . I come out of it very nutrient deficient. I have been feeling better after vitamin and mineral loading. Although I am still on 3 to 4 injections a day. I usually split 2ml into 3 injections/day. Somedays when I'm under the weather again I will do an extra injection. I am supplementing all the cofactors including betaine, taking extra magnesium glycinate - 4/day, buffered vitamin C when inflammation on my skin acts up, an essential amino acid powder in juice, NAC, a probiotic with bifidus, I also had to for a couple months suck on Celtic sea salt to get my minerals back. I crave these items when I don't have them. Although I have stopped craving the salt. I still enjoy it, but I was amazed at just how much salt I was having to curb my cravings and start feeling normal again.

I have also been able to cut back on some of the other supplements and not have them every day, but only after a couple of months vitamin loading. I also think I was low on b12 after the birth of my 3rd child. She came a week before the lockdowns, but I think I had caught covid several months before it was a thing. A strange illness was going around my town and a friends son of mine had a fever for like 3 weeks; he's fine. I was sick with it for several weeks then put on bed rest and my child arrived a little early. Later I found out this strange illness was most likely Covid as it matched the description of Covid. I had been struggling with my health in a major way since. I had not made the connection to catching Covid, but when you are surviving you don't always have the mental capacity to connect the dots.

Littledancingtiger9 months ago

Thanks everyone. I feel like I am severely nutrient depleted and I also really look it too. Pale, dark eyes, dry lips and losing weight.

I’m going to run a bunch of testing myself for some additional stuff full iron panel, copper, zinc, folate, vit d, selenium, magnesium etc. and I’ll have to go from there.

GP I saw was not at all interested said if it’s long Covid then I have to “learn to live with it” and there’s nothing to be done anymore as funding has been cut. Only interested in running the same old tests and criticising me about my private treatment over the years! “Could the nhs not sort you out, why do you do so many things privately?”

I left absolutely exasperated. I’ve not been to a GP in over 4 years as I had kept myself well without them using private blood testing and doctors as needed. Last time I went to a GP was to fight to get my injections back after they insinuated I likely had MS instead and B12 was a placebo. I was vindicated in the end when I demanded to see a haematologist and my antibodies came back positive… again because I had already been diagnosed with PA in 2011.

I will start with the tests, make sure I eat as well as I can and go from there!