Anyone got any sensible advice or input from GP re long COVID?

[EL8888]

I had COVID back at the start of February this year. I got it confirmed by an official test and felt fairly unwell and was off work for a few weeks. Since then l have felt consistently dizzy and tired. Even when sitting down then l feel dizzy. I contacted my GP, they did a set of fasting bloods. The results 3 weeks later were within normal range apart from iron and GP suggested l took iron supplements. I tried to explain l am
already taking a decent quality supplement including iron as well as iron supplements. l gave her the recommended doses in each but she made it clear she didn’t want to get involved in that and a few times told me to go to my local chemist . She didn’t even address my COVID issues, when l brought that up she gave me the “it’s one of those things” spiel. I asked what the next steps were and she said she didn’t know when l would feel better. I clarified next steps from them and she basically said nothing, then reiterated the “it’s one of those things” spiel. I wrapped the call up then as l was clearly having my time wasted. My current plan is to call back in a month if l am still as dizzy and tired.

There is a back story to this as my GP’s are crap at the best of time, they have also used COVID repeatedly as an excuse not to do stuff. I blocked their texts last year, as l was sick of their constant texts asking patients not to contact them Ironic as try to avoid them like the plague as they are typically clueless e.g. test results a few years ago were deemed to be “normal”, l requested and got a breakdown of the results and found one was way outside normal range. I also had to make a formal complaint about their lack of knowledge re referral to NHS fertility services. We are moving house soon and l will be switching surgeries then

EL8, you have my complete sympathy. I got absolutely no support from my GP over menopause or thyroid issues. They are not interested. Re the GP surgeries Im really not sure what is happening. Myself and my husband are meant to get regular blood tests, well over a year now and not a word. I did get my asthma review. Sadly, I think Covid-19 is causing huge problems re waiting lists/backlogs. Perhaps someone more in the know can reply to you better than I can. Hope you get some answers.

Well, I think they’ve identified the problem but they aren’t being very good. Low iron can make you feel dreadful & 100% the symptoms you describe. I speak vast experience. Can also cause breathlessness, heart palpitations/heart racing, night sweats, light headedness & fainting. Iron is also notoriously hard to absorb in tablet form - have a Google & there’s loads of info on it.

If you genuinely are taking two lots of decent, GP strength iron tablets then that’s a red flag that your iron is still low. My body struggles to store iron, like really struggles. I’ve been on an enormous dose of iron, taking it with orange juice, avoiding diary (all things that affected absorption) and I lived off iron rich foods & I kept being stubbornly anaemic. I now have to have regular iron transfusions at the hospital as it’s the only thing that works & keeps working for a period of time before dropping off again.. I also still take iron but use a prescribed liquid iron as it’s more easily absorbed than tablets.

Go back to your GP about your iron. You need to consider other options to get your levels back up. If you do that & still remain dizzy and tired, then long covid can be explored.

It could also be vertigo/labyrinthitis.

I had a really nasty bout of it following a viral infection in 2016.

@LivinLaVidaLoki l had labyrinthitis a few years ago and it feels distinctly different to that. The dizziness never ever alleviates with what ever this is

I think the problem is there perhaps isn't much GP can do? My colleagues have had long covid for 13 months, very gradual improvement but still nowhere normal. They have had heart monitoring and lung scans etc. Lots of diagnostic tests but no treatments...

Loads of people with long covid are experiencing this. Something to do with the autonomic nervous system (POTS) Can you check your lying and standing bp ? Or your pulse when you stand up ? That will give you an idea. There's a few really good facebook groups for long covid sufferers where people mention this quite a bit.
I had a really low iron (ferritin) - think it was 8. Didn't experience dizziness, more of a fast heart rate and palpitations but everyone's different.

@HolmeH l don’t think they have identified the problem at all, they are fobbing me off by attributing it to peripheral issues. I’ve had anaemia issues for years, they can’t / won’t explore them -that’s another story! I have had an anaemia diagnosis on and off for about 4 years. But have never ever felt like this, the GP conceded my iron numbers have been worst in the past. I literally feel dizzy constantly e.g. lm lay in bed at the moment but still feel dizzy, despite not moving and just typing on my phone. Plus the symptoms came on with the COVID and have never left.

I do all the right things for my iron levels -decent quality supplements and never miss, orange juice, fresh citrus fruit, spinach (had it 3 days in 1 week recently), Friday night is steak night our house (it started as a lockdown indulgence and stuck!) etc. I tried to tell the GP all of this but she didn’t seem to want to hear it and was talking over me

Cool. I thought the same, l am going to leave it a month, ring the GP’s, hopefully see a different GP and be more pushy about it all

@Gothichouse40 thanks. Yeah the surgery are lame at the best of times but have used COVID to be even more lethargic. I had to wait ages for the blood results and then only said they would call me back Wednesday. Wouldn’t even say AM or PM. I am working full time like most people and hoped they did not call back during a meeting. Im also nervous about returning to the office, as lm working from at the moment which isn’t great but stops the constant running round / lots of travelling. But it won’t be like that come June / July whenever as go back

TBH you’re just getting treated the same way people have for decades with post viral syndrome.

Pots , autonomic issues and chronic fatigue are all very common post any viral illness but more so with covid. Have you Facebook? There are loads of long covid groups that could help you figure this out.

I think lots of bad systemic viral or bacterial infections leave your body wracked for some time afterwards. I had whooping cough about 2.5 years ago, it literally took about 8-9 months to really feel like it was better. I had a low level temperature, claggy lungs, malaise etc for such a long time I thought it was the new normal.
I hope it goes for you soon

I have a similar post viral issue to long Covid and GP's really have no idea what to do with me, even if they wanted to help. You need to think in terms of promoting the best possible chance of healing, for me this has meant major lifestyle changes in terms of diet etc. and pacing - so you aren't constantly exerting yourself and can stay in a more 'healing' place. The CFS/ME websites have lots of advice and support.

www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf

Summary here:

www.emerge.org.au/treatment-and-management

So they tested you, said you had low iron, even with the supplements you've been taking yourself but you refused to take the dose suggested by the doctor?
What is it you want them to do?

Can you see a BANT registered nutritionist?

They will look at the factors leading to the long covid - pre existing imbalances and deficiencies - and the overall functions of the body.

Lots can be done for long covid if you look at the reasons why it has arisen.

@Roonerspismed

Can you see a BANT registered nutritionist?

They will look at the factors leading to the long covid - pre existing imbalances and deficiencies - and the overall functions of the body.

Lots can be done for long covid if you look at the reasons why it has arisen.

In other words, if you're a fool with too much money, then sign up with one of these snake oil salesmen and they'll tell you that your long covid is all because you eat cooked food and you should live on raw potatoes for 6 months....

@Iminaglasscaseofemotion the doctor wouldn’t give me a steer remember about what to take. She didn’t prescribe anything, she kept on re-directing me to a chemist. So there was no dosage to accept or decline, so no l haven’t refused anything. There’s nothing to refuse

What l want is for my symptoms to be looked into properly, let’s assume it is the anaemia (l don’t think it is for the record as my symptoms have never been so extreme). Doctor didn’t want to get into the detail of the causes of my anaemia or get into the treatment

There is a long Covid sufferers thread on Mumsnet and sadly, your experience is common. The general advice is rest and rest some more. You could push for an ENT appt also. The medical profession seem to be in the dark about long Covid but I guess they're learning things all the time.

There were also very supportive threads last year called something like 'my lungs are on fire' which followed posters on their journey through Covid. Some recovered quickly but others, like myself, have ongoing issues. It might help to have a read of those threads to see what other treatments people have had.

Did they check thyroid in the blood tests? How far are you moving? Would the new GP agree to take you on before you move?

Re the tiredness...
Try Googling Pacing, Boom & Bust
Sleep hygiene
A graded exercise programme may be useful once the dizziness settles.

If your iron is significantly low, otc supplements won’t sort it, you need the proper pharmacy strength ones. I had severe anaemia (I was called at 8pm and told to go to hospital after my bloods were taken earlier that day) and I noticed a significant difference after a just a week of prescription tablets - I was like a whole new woman after a month. Maybe it’s worth giving that a try - if it works, great, if it doesn’t then you go back to the gp armed with that evidence and push for more tests.

Has your blood pressure been checked? And your thyroid?

Might be worth just moving GP now to get someone decent who you can trust.

I would also say you haven't given your recovery very long if you were only ill in February. After swine flu pneumonia it took 6 weeks before I could do much at all, then over 6 months until I was better. My thyroid had decided to act up on that period too, my GP at the time said it isn't unusual for severe illness to bring on any autoimmune conditions. So you need to push to be treated, but if you can work from home then talk to your employer about an Occupational Health assessment, it may be best to keep working from home a bit longer rather than pushing yourself too hard.

bookworm

That’s a real shame you think that. Have you had a bad experience?

I had CFS and helped myself hugely through various dietary changes and some supplements. Not expensive ones!

I have retrained in the area. Most people we see are end of the roaders with the NHS with various gut issues, chronic fatigue, post viral, hormone issues, anxiety, depression, thyroid problems - most western ails.

I am evangelical about the improvements that can be seen. Of course not always a cure and always evidence based.

A lot of practitioners have seen real results with long covid patients - similar to CFS. I don’t want to suggest supplements here but things like quercetin, optimising various essential micronutrients, working out what has impacted energy production can really help.

No need for expensive tests and supplements; often simple food and lifestyle changes can have a profound effect.

This info may be helpful - relates to CFS/ME, but they are also types of post viral conditions, as long covid is. I would definitely look further at POTS too. I hope you feel better soon.
www.yorkshirefatigueclinic.co.uk/media/uploads/2020/10/26/theory-model-oct-2020-95446.pdf

Op do try speaking to the pharmacist.
Also i read that with say mmr a study re africa said that the reaction to vax wasnt as good if anaemic so definitely worth sorting if you are likely to get a covid jab just in case.

Could you be b12 deficient? Are you veggie/vegan.
B12 needs D and iron to work.
I do agree with pp in that you are only a short while into this.
I felt better after 4m but still had issues. I had pulsative tinnitus and covid can affect the ears.
My mum went on antidepressants for dizziness years ago and that seemed to work for her so i guess it depends on the cause.
If you are anaemic are you drinking tea as that affects absorbtion