Long Covid: Hi Everyone, could only happen to me... - Thyroid UK

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Long Covid

scoobydoo87 profile image
28 Replies

Hi Everyone, could only happen to me.

After struggling for so long with my Thyroid symptoms, I decided to see a private endocrinologist. Wish I’d done it a lot sooner.

The best thing was, he sat there and listened to both me & my husband for nearly an hour. No yawning like my Gp.

He’d gone through all my past history & blood tests before hand .

He more or less changed all my medication.

He gave me a trial of T3, Vitamin B6, folic acid & Vitamin D. Also changed my form of HRT to a gel.

I have put on nearly 5 st over the last 5 yrs so he prescribed the new Diet injection Saxenda.

I felt like a big weight had been lifted & so happy that someone actually believed me & understood .

He wrote to my Gp & unbelievably she did everything he’d asked.

So to start everything gradually.

A month later I contracted Covid, no cough, or the normal symptoms. I couldn’t stand up without getting out of breath, tremors. Couldn’t walk up stairs without stopping. No appetite & feeling sick. Lost my taste. My everyday foods & drinks taste rancid. Couldn’t do anything, even brushing my teeth’s an ordeal.

8 weeks on & I’m still the same. Our health centre has a covid clinic for people like me, to give advise & check for heart problems , blood pressure , chest problems etc. nothing they can do medically till I get to 12 weeks , then I’d be referred to a long covid clinic.

So there it is . Not a clue if any of my new medication is working . Only taken the Saxenda, for the first 4wks. ( definitely worked, lost my appetite & lost 1 stone )

Since getting Covid lost my appetite anyway.

All I can do is wait & hope I haven’t got long Covid & get better soon

Just a note to add. I have always stuck to the Covid rules. If anything over the top , I tested 3 times a week through work . I’d had both jabs and the booster along with the flu jab. Still got it .

I wouldn’t wish this on anyone & dread to think how I would have been if I hadn’t been jabbed.

Sue

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scoobydoo87
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Lizzo30 profile image
Lizzo30

The late great Dr Katherina Dalton warned women against taking too much or even any vitamin b 6 Just thoughtI would point thst out

I have long covid my legs and hips have been aching like mad recently I took magnesium citrate powder last night and it has made a big difference today

greygoose profile image
greygoose

Glad you got the T3 prescribed. But, just taking one or two B vits isn't going to do you much good. They all work together so need to be kept balanced.

Most importantly, did he test your B12 before prescribing B6 and folic acid - the best form is methylfolate, anyway. If he didn't, personally, I would stop the B vits now and get B12 tested asap. :)

Alanna012 profile image
Alanna012

To reassure you: I caught covid end of march/ beginning April last year, and I had the high temperature for all of 3 days, virtually no cough, and I was still symptomatic until January the following year. At that point I took a course of steroids (because my asthma attacks were suddenly huge and asthma UK said it was still covid related, inflammation in the bronchials and lungs) and since then I have been back to just 'thyroid sick'.

So 8 weeks isn't much. I don't know anyone who became really very ill with it who was feeling well in that time. My neighbour is a nurse and said 6 weeks is the very minimum for proper recovery. Many people go back to work still not feeling completely recovered. My ex is fit and strong, and it took him around 16 weeks before he felt back to himself.

We both had lungs scans which came back as good and neither of us could breathe properly.

At 8 weeks I still couldn't breathe properly, at 4 months, I still couldn't walk down the street without feeling like I had sand in my lungs, and being extra tired,l (which I thought was impossible) although I was otherwise well. I didn't feel 90% there until November.

When this virus really gets a strong hold, it takes months to recover. It is a strong virus in that sense.

I did eventually take lots of zinc, and vitamin c.

I know that actually doesn't sound nice, but wanted to let you know it's not unusual to take significant time to recover, but you can completely.

I am actually highly suspicious that the medical profession has been so fast to describe lingering malaise after covid as 'long covid' when people develop the same symptoms following pnumonia, flu, glandular fever or Epstein Barr they dismiss it as chronic fatigue, M.E or fantasy/ depression. But maybe some features like the breathing difficulties are peculiar to covid.

You need to rest as much as possible. Completely whenever you can. I am querying the Saxenda. How does it work exactly? Could it be blocking your ability to gain energy from carbs or nutrition from food in some way?

scoobydoo87 profile image
scoobydoo87 in reply to Alanna012

I stopped taking the Saxenda when I got Covid as I have had no appetite since. Nothing tastes right either.

I have no choice but to rest, just do very little when I can.

I was diagnosed with Cfs/Me a long time ago, along with Fibromyalgia.

This is different for me, the breathing difficulties are something I’ve never had before. I’m no stranger to feeling exhausted .

My son & husband had hardly any symptoms of Covid . It’s unbelievable how bad it affects some people.

Sparklingsunshine profile image
Sparklingsunshine in reply to scoobydoo87

Hi

If you're a female and already have any autoimmine conditions you are a higher risk, due to our strong ger immune system we don't die from covid as often as men do but our Immune system overeacts and goes a bit hyper. They think long covid is either due to the immune system overacting even though the virus has passed, like a residual effect, your body doesn't realise the virus has gone and is one high alert.

Or there could be still pockets of virus in your body and your immune system is trying to get rid of them. Some interesting research showed people with persistent long covid have tiny microclots in their bloodstream and this was causing issues.

Some people have found when they got a jab their symptoms passed, by giving the immune system a kick up the bum it helped clear the virus out. Are you due a booster?

scoobydoo87 profile image
scoobydoo87 in reply to Sparklingsunshine

I had my booster just before I got Covid along with my Flu jab , at first I thought it could be a reaction until my husband & son came up positive for covid, so I went for a test & was positive.

userotc profile image
userotc in reply to Sparklingsunshine

Re "They think long covid is either due to the immune system overacting ...", I believe the "experts" are quite certain that is a hallmark of covid with a cytokine storm. The question is what are they doing about it?. In my opinion, mainstream "experts" are doing very little. For example, vit D (at the right serum level) has several mechanisms and reducing that storm is just one and the vaccine doesnt do anything for it.

Why oh why isnt more done on natural protection and treatment? I think I know why and it doesnt help us at all.

posthinking01 profile image
posthinking01 in reply to userotc

Vitamin C is necessary to reduce a cytokine storm. It also helps the adrenals - B6 can reduce cortisol in the body which isn't good if you are already low - I am on steroids and find B6 gives me loads of energy - probably because I am a little over medicated on cortisol.

userotc profile image
userotc in reply to posthinking01

Vits B, C, D all have roles in natural immunity but I think D is the key one re mediation including protecting against cytokine storms. AS I said 6m ago here, its a pity/worry that natural protection is barely considered, particularly by Governments.

The pandemic appears to be winding down but I see no plans for natural includion for the next one(s) in the future, Im afraid.

posthinking01 profile image
posthinking01 in reply to userotc

Vitamin D is not good for the kidneys - it makes me ache.

userotc profile image
userotc in reply to posthinking01

Do you have evidence/a link stating it's no good for kidneys? I have some indicating otherwise.

posthinking01 profile image
posthinking01 in reply to userotc

Well first of all I am renal patient -at a major London renal hospital - been told recently when asked what I took supplement wise to be careful with D as it can cause issues with the kidneys - I agreed with him and said it does not agree with. Laying down too much calcium and I get kidney stones.

userotc profile image
userotc in reply to posthinking01

I can send links from prominent kidney sites eg da Vita, which indicate D supplementation be considered (with low/deficient D being a characteristic if CKD) but I suspect it may be fruitless in your case, particularly as you've had issues. Of course, there can be issues with anything (maybe even vit B, C) so it will not suit all.

My mum has stage 3 CKD but supplements vit D and there is evidence it has helped her eGFR although we continue to monitor. If you're later stage, maybe that's the issue?

userotc profile image
userotc in reply to posthinking01

If you supplement vit C (as indicated earlier), I trust that you/doctor has considered if that could be causing your pain/stones issue rather than D? See "avoid" list here kidney.org/atoz/content/vit...

posthinking01 profile image
posthinking01 in reply to userotc

I'm sorry to say that what my Dr. knows about nutritional medicine could be held on his little finger if that. I have been extremely ill in my life and thank goodness started studying nutritional medicine when I was 19 to understand what my symptoms were - and I discovered that more often than not the body was asking for 'extra' as it was dragging nutrition to send to the part of the body that needed it - I am now 74 - it was actually the medical profession who, at aged 11 or 12, when I had serious chilblains so bad - on my elbows my buttocks - my fingers - toes - end of my nose etc. etc. - my teacher used to let me sit on my legs on a chair to stop the pain - prescribed me a fizzy calcium drink - then low and behold I ended up with renal colic and kidney stones.

Of course I now realise that I have had a metabolic circulatory problem (thyroid dysfunction) since birth,with the problems I had already experienced as a child. It was magnesium I was low on not calcium. Vitamin C - yes can dehydrate the body and cause 'gravel' but not in my case - I developed scurvy when first being put on thyroid meds of 25 mcg without adrenal support - obviously my adrenals were a major problem in my illness - I had bright red bruising on my body - my teeth were loose and a scar on my abdomen was getting wider - thank goodness I realised what it was and immediately took high dose of C and eventually it corrected itself. My poor worn down adrenals were screaming for Vitamin C to help them as the thyroid meds sped up the metabolism. The adrenals have and need the most Vitamin C in the whole of the human body.

So whatever you feel is working for you then please continue - yes B6 should not be taken over long periods because of nerve damage but nothing should be taken unless you know it helps or you are deficient and..... before anyone says it - B's work together in synergy - I know that and it has been my mantra for many years - Vitamin B also depletes C - but there are times when I work out my individual needs and realise that my body needs an extra boost of something or the other. But not everyone can do that I realise. I was very lucky up to a couple of years ago to have regular and extensive vitamin and mineral tests and more often than not I was always right when I saw the results. The amounts (dosage) he wanted me to take ( I always resisted his supplements and told him I would buy my own) - were always a lot higher than I wanted to take so I would take a dose a lot lower than he told me to take - slowly does it in my opinion.

I research my 'field' regularly to get me through my health issues - and without my knowledge and common sense approach to my health issues I would not be sitting here now.

I do not metabolise D very well so keep off it - it works for many but not for me - if something is making me ache throughout the whole body I have learned - my kidneys are saying 'ouch'.

What I also found when being tested regularly, as the consultant I was seeing told me 'you are deficient in this and that' and told me to take what I was deficient in - next time I went to see him (3 months later) it appeared that what I had taken had caused others to drop down and be out of balance - so yes you should be careful with supplements and know what you are doing and what drugs you are taking that supplementing could cause an issue with - but actually no-one has every died from taking a supplement - I wish I could say the same about the drugs industry.

As I have said sometimes the body 'asks' for extra help with a vitamin or mineral - at this time with me it is B6 that has helped - but whether that will help everyone - that is for them to decide and use their own common sense.

We are very lucky today that we have the internet which can inform us if we are interested - when I first started out before the internet I was writing to Professor's all over the world to get their advice and sitting in the library or a bookshop eager to 'learn' what some 'expert' or other was saying. It was not easy believe me. Also cost me a fortune in books.

What we must not forget is that every person's health is so individual - what works for one may not work for another - I don't take anything unless I have researched it fully - trusting my own judgement even more so than a consultant who is allegedly an 'expert' in nutrition. It has taken me over 55 years to understand the wonderful world of the science of nutrition and what I have discovered in my own illness is that the body talks to you and will show you signs of what it needs - you just have to recognise it !

Hope this helps.

userotc profile image
userotc in reply to posthinking01

I totally agree with most/all of your comments. Particularly statements like "what my Dr. knows about nutritional medicine could be held on his little finger if that". I just didnt want to say that as Id got the impression you believed in your doctor(s)!

Like you (and following the bad experience with medics/allopathic medicine 6y ago, as outlined in my profile), I had to revert to a natural approach which I use for myself and parents. Consequently I have studied Naturopathic Nutrition for the past 3 years and will qualify as a practitioner this summer so that I can help others.

Stay well...naturally!

Alanna012 profile image
Alanna012 in reply to scoobydoo87

Yes I have a diagnosis of fibromyalgia and chronic fatigue as well, so yes, I just came across as patronising saying rest, when you are probably already resting more than the Pharoahs.

It's very scary but I promise the breathing will, and does get better.

Just like you in the first few weeks I got out of breath simply bending trying to load the washing machine and going up the stairs, I did it on all fours.

You need to take supplements to support your immune system. What was your vit D level and how much were you prescribed? Perhaps you could take more.

I think especially if, like me, your adrenals are already struggling, then it does take longer to get back from this illness. You were strong enough to fight it off, which is good, but it will take time to recover. Which, if you're already feeling ill just sucks.

The T3 is good, apparently there was a study showing diminished levels of T3 in the lungs of covid patients. Not sure about how robust it was though.

Unfortunately it's winter, but if at all possible I encourage you to take a reeeaaally short walk maybe just in your garden or to the end of the drive or road whilst deep breathing. Force your lings to take in as much air as you can and breathe it out slowly.

One other thing I did was follow Dr Myhills protocol of using a salt inhaler with some lugols iodine drops added. Would do that for around 20 minutes a day for several weeks.

scoobydoo87 profile image
scoobydoo87 in reply to Alanna012

Thanks for your advise , going to try short walks this week , definitely need some fresh air, just wrong time of year.

NWA6 profile image
NWA6 in reply to scoobydoo87

Yeah, wrong time of year, that damp air will not do you any favours 😞 We all had Covid in August, hubby had a really bad cough, he still coughs now over nothing. The damp air has been getting to him a bit atm. I didn’t get any usual symptoms. Only thing that I suffered with was lethargy, sore eyeballs and general feeling of unwell. I had to up my T3 within 4wks post Covid.

For me, thyroid function and low B12 need addressing/monitoring post Covid or any other serous virus.

I wish you well and hope you get some relief soon 🤗

jjf255 profile image
jjf255

Sorry I don't have much advise for you, other then telling you what happened to me and what I am trying to do to feel better. I live in the U S and had covid in early April of 2020 without the upper respiratory symptoms. I ran 103 degree temp for 8 days, felt like death warmed over, lost my taste and smell and had no appetite. Within a few weeks I started having severe joint pain. My doctor's office was closed and they were only taking phone calls. The nurse said it sounded like long haul covid, but admitted they really knew very little and to just treat the pain with Ibuprofen and Tylenol. It took almost 9 months for the joint pain to start to lessen. Fast forward to April 2021 and I got the covid vaccine. Within 4 hours of getting it, I ran 102 degree temp and within the following week the joint pain started all over. Now my doctor said they are seeing more and more of this with those that have had covid and then get the vaccine. He said it is inflammation through out the body. His answer was to treat with an anti inflammatory. I am now searching every way possible to lessen inflammation in my body.

Batty1 profile image
Batty1

I never heard of Saxenda so I looked it up and it says it can cause thyroid issues.

scoobydoo87 profile image
scoobydoo87 in reply to Batty1

I’ve read quite a few contradictions lately . I’d gone through all my medication to see if any had side effects like my symptoms. It’s as well I’m not taking the Saxenda now.

helvella profile image
helvellaAdministratorThyroid UK

Probably best to look up liraglutide - the International Non-Proprietary Name for the active pharmaceutical ingredient of Saxenda.

Batty1 profile image
Batty1 in reply to helvella

liraglutide (Saxenda) same thing when I looked it up .

helvella profile image
helvellaAdministratorThyroid UK in reply to Batty1

It is the same thing (didn't I say that?) - but searches don't always find all the information if you use the brand name. Especially if the medicine is available under different brand names. Like Victoza or (in a combination) Xultophy.

And in documents like the British National Formulary, it is under the heading Liraglutide:

bnf.nice.org.uk/drug/liragl...

Batty1 profile image
Batty1 in reply to helvella

I didn’t say you said that I just stated when I look it up on drugs.com it provides both names… Im unable to to in to the site you provided.

helvella profile image
helvellaAdministratorThyroid UK in reply to Batty1

Forgot that is not accessible outwith the UK.

This site does the same:

drugs.com/monograph/liraglu...

You might get there if the search engine has indexed the contents well. But you might not.

scoobydoo87 profile image
scoobydoo87

I don’t think many people know it’s available on the NHS now, for people who fall into the criteria .

ie : Over a certain bmi , pre-diabetes etc .

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