At Christmas, I got a bad case of Covid that lasted for a while. Then I started to get sick regularly. As in really sick. Every day, around 16:00, I would start to feel extremely bloated, and my stomach would get so bad I couldn’t get a decent night’s sleep. So I asked Google why I was feeling this way, and I was told to think about what I had eaten 6 to 8 hours earlier. Aha, I thought. Granola or muesli. Every day. Like clockwork. Then later, it was a sandwich. So I cut out gluten, and experienced immediate improvement.

I am now living a relatively comfortable gluten-free life. I doubt it’s coeliac, but whether it is or isn’t, I definitely feel better.

Sort of.

I was still getting insurmountably tired every day, and started to get aches in my shins and sometimes my forearms. So I made a GP appointment, and ended up getting a blood test. Now, I don’t know about your surgery, but mine doesn’t tend to get back to you with results very quickly. So when my phone rang one business day later, and my GP said he had something he wanted to talk to me about, I froze.

Well, it turns out, I was dangerously low in vitamin D, and moderately low in B12. Because I had been vegan for a while before that, he got me eating eggs, cheese, yoghurt, and other stuff to up my B12, but put me on what he called a ‘bazooka course’ of vitamin D.

Again, I felt better fairly quickly, but I still couldn’t shake the extreme fatigue. Then the subtle achiness returned. Then the tingly head. ‘Shit’, I though, and called the GP again.

Off to another blood test, and another call the next day. It turns out that, even having upped my B12 intake, my levels had tanked. So the GP suspects pernicious anemia. I am currently being monitored before one more blood test to be certain, but I currently have zero strength, zero endurance, constant fatigue, frequent aches… I feel like I’m falling apart. And I’m only 49. Also, until my accident two and a half years ago, I was pretty fit. So this is hitting pretty hard. To top it all off, I have absolutely no desire to ride a bike. Not even look at one. For the first time in many years, I didn’t even both watching the TdF. And I’m pretty sure it’s because I’m sick all the time.

Anyway, I have nothing much to ask or say about it all. I just wanted to vent. But if anyone has any thoughts about the things I mentioned, feel free to chip in. Who knows, you might have some advice. Otherwise, misery loves company!

Vent away, it does sound shit

Sounds like you’re having a really tough time, hope they find a solution for you soon and I’ll stop moaning about my far less significant ailments

You sure this isn’t all still Covid related? I mean, it’s a pretty new thing and the long term after/side effects aren’t really known.
Sounds bloody awful, my AF means I haven’t got as much energy as before, but I still love bike riding. Reminds me have an update for the AF thread.

Two things: first, some of that stuff sounds very familiar and long covid-ish. It’s been known to mess with vitamin levels and cause severe, crushing fatigue and PEM, so I wouldn’t write that off as a root cause.

Second, B12 and testing for B12 is complicated. The standard issue blood test is known to be unreliable and the more accurate test, which does exist, is often not used by GPs because it’s more expensive. As I understand it, blood levels of B12 don’t actually give a good indication of how much active – ie: useable – B12 there is in your system. B12 tablets are poorly absorbed by the body, oral sprays are better, but injections are the most effective way of rapdily upping B12 levels.

As someone who’s basically been wiped out by what is likely long covid for most of the past 18 months, I can properly empathise. I’ve been back on the bike now for about six weeks and gradually improving all the time, but it’s been a horrible slow, frustrating, non-linear and profoundingly depressing process. On the plus side, it sounds like your doctor is on your side and being proactive, which is a positive. Good luck getting through it.

My Dad has to have B12 injections ever few months as he can no longer extract it from food.

It does sound crap, really crap. You have every right to grump. So vent away.

(FWIW, we have been through this with mrs_oab many years ago. After a couple of years of seemingly random and very serious medical issues, she saw a Local GP. Who was just out of training and had a lecture on Zebra’s. Thankfully the locum was having a good day, and decided to send mrs_oab for every test he could think of.

Within 5 months she was diagnosed with a Primary Immunodeficiency Disease ( CVID ) and was one of the first patients globally on weekly self-administered at home subcutaneous infusions. We are surrounded by a slick NHS system to support the treatment and pay for the (huge) ongoing cost.

She still struggles with issues that few know about – chronic tiredness, aches and more. But at least she is still standing. As recently as the 1990’s she would have died from this years ago.

Keep hunting and working with the doctors.)

If it is any consolation, all bar the low B12 sounds very similar to the nine months I had leading to a diagnosis of Chronic Fatigue Syndrome, which is as far as I can tell a catch all diagnosis when they can’t really work out what is wrong other than it’s a post-viral syndrome.
Through diet and conservation of energy strategies I have got back to very near normal, although I do have some occasional transitory symptoms ( like last week 🙁 ) because the diagnosis was just before Covid struck, I haven’t had any of the usual cognitive therapies often used to help.
It has taken over a year though. Hang in there.

Thyroid OK? Iode? Are you prepared to eat fish such as sardines?

IIRC low vitamin B12 levels are linked to covid.
However they don’t know if having covid causes your B12 levels to plummet or if having low levels of B12 to begin with make you susceptible to getting covid.
There was something about it on radio 4 a while ago, check the iplayer thingy

https://www.bbc.com/future/article/20200127-how-a-vegan-diet-could-affect-your-intelligence

https://revero.health/

Eat more meat?

B12 injections are easy to get and routine – even Superdrug advertises them – worth doing it to rule it out.

With all the tests it’s probably worth getting iron levels checked. Not just haemoglobin but ferritin and TSAT as well. Iron tablets do work but not the nicest to take and do need to be taken properly. Otherwise iv infusions are available in a hospital outpatient setting, fairly quick and reasonably well tolerated by most people.

I’ve never had symptoms like the OP but my vitamin B12 levels are so low they’re off the scale. I have to have an injection every 3 months and the nurse always says “ooh, you’ll be feeling turbo charged tomorrow”. My reply is to show my Strava stats which show that the 50 mile ride I did yesterday at 14 mph was no worse than the one I did just after my last jab.
I expect it’s down to my alcohol intake but I always feel fine and don’t have the other symptoms of pernicious anaemia. I eat lots of meat and I’m one of the healthiest and fittest 68 yr olds I know.
I don’t bother about it.

Sorry to hear your troubles. I was diagnosed with covid aboit 5 weeks ago and after initially thinking I was all better have struggled for the last couple of weeks and have experienced some symptoms not unlike yours, albeit nowhere near as severe.

I made the mistake of googling long covid and seem to have every symptom going! So doing all i can, eating well, resting when i need to and doing good but light exercise every day seems to be helping.

If you reasearch back, 100 years ago life expectancy was in the 50s so it shows what advances in medicine and diet have done to nearly double this and I think diet has a lot to do with it. (Source ons https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/articles/howhaslifeexpectancychangedovertime/2015-09-09)

Veganism for all its merits does mean missing a lot of essential nutrients and without some serious supplements, many vegans show deficiencies. I think the combination of this, plus a nasty, not fully understood disease and being over 40 wont be helping.

(The article Paton linked is very similar to a number of peer reviewed articles I read when a fad succccitable friend went full raw diet and we were trying to advise against)

It sounds like you have a decent gp and you are doing all you can so really good luck.

The feeling of being far fitter than most then not wanting to do anything cant be great, so you have my sympathies.