Long Covid and Thyroid.

[DoeStewart]

Hello folks, I will try to keep this as short as I can. I have been unwell since beginning November with a slight cough, had covid test 15th Nov - negative. Spoke to GP over phone 16th Nov diagnosed sinusitis and gave 5 days penicilan? I felt worse by 18th Nov with most covid symptoms and saw the GP who changed antibiotics to Co-Amoxiclav for 7 days. By day 6, I felt on the mend but within a week was very ill again. I had another covid test 7th December - negative, rang GP who sent me to a covid hub. I was examined, told at some time possibly Sept/Oct I may have had covid without symptoms and now have Long Covid with symptoms - take paracetamol? I was very unwell and on 19th Dec was in an ambulance going to hospital. After a barage of tests which were fine, again told sounds like Long Covid, get an antibody test to see if positive or not. One odd thing that did show up though was my thyroid results at hospital. On 18th November I had bloods taken at GP surgery and thyroid results on 100mg Levothyroxine were

TSH 0.34 ( 0.30 - 5.50)

T4 18.2 (11.5 - 22.7)

In hospital

TsH 0.10

T4 34.8

No ranges unfortunately but huge difference. Endo has told me to reduce Levo to 75mg each day and retest in 4 weeks. Any idea why this has happened?

Sorry about the long post, thank you.

[SlowDragon Administrator]

Looking at previous posts and massive drop in levothyroxine dose over recent years

Obviously you need to get FULL Thyroid and vitamins tested

Ask/insist on GP testing

healthunlocked.com/thyroidu...

[DoeStewart in reply to SlowDragon]

Hi SlowDragon, I have mentioned further testing to GP, refuse to do T3 as "not necessary" and said don't need vitamins as tested last year 🙈. GP are following Endo's instructions to the letter and insisted I do the same? Do you ever feel you are banging your head on a brick wall? I can't get the hang of doing my own bloods with the lancet, I normally have a nurse come to the house to take bloods but this isn't available at the moment.

[SlowDragon Administrator in reply to DoeStewart]

I use to pay extra for private blood draw.....but have got the hang of lancets ....by buying heavier duty ones on eBay

ebay.co.uk/itm/10x-Unistik-...

Just TSH, Ft4 and Ft3 £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Vitamin D test here only requires 4 drops blood

Vitamin D NHS postal kit

vitamindtest.org.uk

[DoeStewart in reply to SlowDragon]

Thats interesting SlowDragon. Can I ask about the NHS private service, where is this done? I think I could manage 4 drops for vitamin D test though

[SlowDragon Administrator in reply to DoeStewart]

Monitor my health test done at Exeter hospital

monitormyhealth.org.uk/our-...

monitormyhealth.org.uk/our-...

Thyroid test requires about 15 drops in test tube

Follow Seasidesusie tips on how to do test

Especially....be warm, exercise before test and stand up

healthunlocked.com/thyroidu...

[DoeStewart in reply to SlowDragon]

Thank you for your help, I'll check up on Seasidesusies tips for blood collection

[SlowDragon Administrator in reply to DoeStewart]

See 8th reply from Seasidesusie on this post

healthunlocked.com/thyroidu...

[DoeStewart in reply to SlowDragon]

Thanks SlowDragon thats a great help, much appreciated

[SlowDragon Administrator in reply to DoeStewart]

Monitor my health is still a DIY at home kit

[Redlester in reply to DoeStewart]

I don't know if this helps, but I have had trouble doing bloods with lancet, time before last had to have a go at 3 difference fingers and got almost none but found that in my case if I pricked the pad of my first finger with the lancet I got loads of blood very easily.

[DoeStewart in reply to Redlester]

Thank you for your reply and your advice, I'll give that a try.

[Bearo in reply to DoeStewart]

I’m still having TSH/T4 blood tests at the GP’s as I’m still titrating Levo. Had one this morning and asked the Health Care Assistant if, next time, they’d be willing to fill the vial for me to post off for my first private test to get a T3 result. She said she thought that would be ok. So I’m hoping this is what will happen next time. I didn’t do it this time as my appointment was deferred until today and it now feels too close to Christmas.

[DoeStewart in reply to Bearo]

Oh thats a good idea Bearo- I have my next bloods on 12th January to see whats happening after reduction in Levo, I am also getting antibody test at same time. I have a medichecks thyroid function test at home, couldn't use it due to lockdown, I will ask phlebotomist when I go if she will fill that test for me at the same time, at least I'll know my T3 then. Thanks for the idea.

[SarahReed11 in reply to SlowDragon]

What does a FULL thyroid test involve please?

[SlowDragon Administrator in reply to SarahReed11]

Looking at previous posts you are on levothyroxine plus T3?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[SarahReed11 in reply to SlowDragon]

Appreciate the full information! Many thanks!

[NWA6]

Hey DoeStewart 👋 It sounds like you’ve been on a rollercoaster of a ride 😞

Personally I think I’d push back with the GP and ask for more investigation. I wouldn’t drop my Levo based on one result esp as you don’t know your FT3 result and from what I’ve read about long Covid, that is often low.

Although had you taken your Levo the day of your test?

If your GP won’t do FT3 test, go private. I think more thought is needed first before changes.

[DoeStewart in reply to NWA6]

Hi, thanks for reply. Yes I had taken Levo early morning on the day I went into hospital so expected my level to be incorrect but not by that much - wouldnt think the T4 would increase by such a huge extent surely?

[Timetraveler67 in reply to DoeStewart]

Hi I just wanted to reply as I experienced a big big difference in results In my tsh ranges last month, Medichecks said my tsh was 3.9 and 2 days later the nhs result was 11 the ranges were the same so I was gobsmacked how there could be such a big difference. Sorry to hear you have been feeling so unwell I hope you feel better soon x

[DoeStewart in reply to Timetraveler67]

Thanks for your reply. Did you find out why your results were so different? My TSH had changed but T4 had shot up as well

[DippyDame]

It sounds as if you have had antibiotics for an infection

"Certain proteins in the blood may be elevated as your body fights an infection or some other inflammation."

mayoclinic.org/symptoms/hig...

I have read that high levels of protein in the blood can cause abnormally high thyroid test results

See " Abnormally high test results"

healthline.com/health/t4-te...

An increase from FT4 18.2 to FT34.8 (I take it you mean FT not TT) does seem abnormal, as you suspect

Hopefully as you feel better your FT4 will drop again....full testing will check this.

If your GP refuses to do a full thyroid test then you might consider private testing

FT4, FT3, VitD, Vit B12, folate, ferritin and antibodies.

thyroiduk.org/getting-a-dia...

I'm not a medic but this might be an explanation.

Best...

DD

[DoeStewart in reply to DippyDame]

Thank you for your reply, very interesting links which make sense. I normally get private testing anyway as GP only does TSH/T4 and you would think I had asked for a face lift on NHS instead of vitamin testing so get that privately as well. I can't get the hang of the lancet to do my own bloods although SlowDragon has given me a link for other lancets so could be worth a try. Yes the figure from hospital blood test was T4, up really high. Fingers crossed everything returns to normal on this lower dose of Levo and I can return to my normal dose . Once everything back to normal regarding Covid ( whenever that is) I will go and see a private Endo who specialises in thyroid and get myself sorted out hopefully 🤔

[helvella in reply to DoeStewart]

Lots of things there from DippyDame

Possibilities that spring to my mind:

One or other medicine interfered with the FT4 test giving a false positive.

The illness itself interfered with the FT4 test.

The illness cause FT4 to rise inappropriately. (That is, test was right but indicates a transient issue.)

The FT4 test is susceptible to interference that has not occurred on previous tests. For example, the rarely reported antibodies to T4 itself. More likely, I feel, if the lab is not your usual one.

Be extremely wary of making changes to a long-term regime on the basis of the extremely limited evidence. It just might be reasonable to try changing your dose, but that change could need to be reversed in next to no time.

Hope you start really getting better very soon.

[DoeStewart in reply to helvella]

Thank you for your advice. I have been on lower dose for 3 days and know it will take a while for the change in Levo to start causing me problems. Endo wants retest in 4 weeks and has advised the GP surgery of this. I am thinking after that next test I may be going up in dose again. I think the hospital Doctor was thinking along the lines of the virus causing the upset in T4? I will post again if any change or when I get next test results.

[DippyDame in reply to DoeStewart]

Hope you feel better soon.Take care.

[DoeStewart in reply to DippyDame]

Thank you very much

[pennyannie]

Hey there

Can I Just send a hug as I've no answers ?

[DoeStewart in reply to pennyannie]

Oh pennyannie thank you so much - I certainly need all the hugs I can get.

[pennyannie in reply to DoeStewart]

I'll double up then !!

Take good care - how are your family ?

[DoeStewart in reply to pennyannie]

Thanks very much. Rest of family all fine thank you, just me, the special one 😂

[annnsandell]

To my mind, this is somewhat incredible, frightening even, especially if this might be repeated with many others. This is obviously not just your medication too high. There certainly has not been enough research about how COVID-19 affects the body. What Long Covid symptoms have you had and what made you go to the hospital? I have seen chest pain, palpitations, and arm numbness, brain fog & dizziness all listed as Long Covid symptoms as well as what you would expect like breathlessness. I understand that there are Long Covid clinics being set up, no doubt you will need a Covid test and referral from the GP for that. There is a statement 'Thyroid UK Statement regarding Coronavirus (COVID-19)' this includes some research so it is all being considered. I guess the problem is that most Coronavirus cases that are ending up in hospital are older or have other problems anyway making studies more difficult.

Good luck and it will be nice to know the results in 4 weeks.

[DoeStewart in reply to annnsandell]

Hello annnsandell, it is worrying isn't it? My symptoms for over 5 weeks have been a cough( not one I would describe as continuous), a headache all the time, severe fatigue, breathlessness, pressure on my chest, pains in my sides and back, nausea and not eating. On Thursday morning when I went to hospital I physically couldn't stand up and was dizzy along with all the rest. I have had 2 covid tests both negative. It seems Long Covid is something you get after you have already have covid. The covid hub I was referred to said I had probably had covid in Sept/Oct ( no symptoms) this had turned to long covid? I need to have an antibody test to try and determine if I have had it or not, although no test seems to be accurate according to the medical profession. I am 67 years old and normally fit and well.

[krl55717 in reply to DoeStewart]

Having Lyme and EBV along with thyroid issues, I have some experience with odd symptoms. I follow (and have taken his herbal protocol) Dr. Bill Rawls with Vital Plan. This coronavirus is a stealthy microbe as are the ones with lyme and EBV. Their goal is to settle in and hide from our immune system. I would get your tests, but I would look up his latest blog and consider starting on a long term herbal program that can slowly help your immune system. Along with that, your limbic system can become impaired (research). Look up DNRS. I think people are doing that and having some success with long covid. Another great ) respected herbal guy is Dr. Stephen Buhner. Look him up. My husband has Covid19 right now - I have him on Dr. Buhners covid protocol.

[DoeStewart in reply to krl55717]

Thank you for your reply, I will research what you have advised

[Redlester in reply to DoeStewart]

I would echo that advice re limbic system and DNRS - a lot of people with ME/CFS have what is considered to be the equivalent of what is now being called "Long Covid" but were ignored and their illness dismissed by the medical profession until covid came along . I have read a lot about DNRS and a lot of people with ME/CFS have benefitted from doing it. Good luck - really hope you improve. Listen to your body - don't try to push yourself too hard if you don't feel well.

[annnsandell in reply to DoeStewart]

Oh dear, that does sound severe and like Long Covid. Yes, for others that are listening, the first part of the virus you fight it off lasting up to a week. If you don't get better at that stage, your body can attack itself particularly the lungs and kidneys when you may need hospitalisation to recover or slowly recover at home over weeks. Long COVID seems to come in weeks or months later and you might not even know you have had the virus. My husband and I have Long Covid symptoms but not as severe as yours but no signs of much improvement 9 months later after the initial recovery. Mine are like heart and thyroid symptoms, his are more breathlessness and fatigue-related. The COVID anti-body test can show antibodies or T cells. Many COVID tests for the virus are unreliable particularly when you have no symptoms and should be timed correctly. So you will test negative if you have been in contact with the disease but it has not developed. At least as we go through this, more is being learnt and leading to better treatment. I have said right from the beginning that everyone who has had this virus needs a proper check-up, we might be getting there, our GPs are still hiding.

[DoeStewart in reply to annnsandell]

GP's are certainly hiding, diagnosing everything over the telephone at mine. I have heard some awful stories about things being missed by them, my husband is one such case. I hope the medics learn more about Long Covid but I won't wait for my GP to help me with my symptoms - useless

[Bluespots]

I am relieved someone else has also concerned about Long Covid. I was unwell in February after meeting overseas traveller. More unwell and more thyroid and immune system chaos ever since. Had ME for 30 years so I am used to managing fatigue. This has been different...way too late for testing or antibody test. Could have just been another virus, but timing. Not classic long cover symptoms........extreme fatigue, malaise and diet problems, nausea. Hope you improve. best wishes.

[DoeStewart in reply to Bluespots]

Hi there, thanks for your reply. Those symptoms you describe are certainly Long Covid according to what I've been told, you don't need to have all the symptoms on the list just one or two of them. Hope you are on the mend and thank you for your good wishes.

[JLTsirius in reply to DoeStewart]

Hello DoeStewart. Sorry you are having a rough time. You might find useful - if you are on Facebook ? the group called - Long Covid Support Group, and then use the search box using various search words, even on thyroid. There are over 30k people on this group, I found it very useful for understanding some of my Covid symptoms. If you post a question, just be mindful that most are not Drs, but many folk have done lots of research to help themselves so anecdotal info i found very useful. I was also given antibiotics, as they had no idea what was wrong with me and CV testing was not available when I was ill. Of course they made no difference as AB's for a Virus are hopeless.

[DoeStewart in reply to JLTsirius]

Thank you for your reply. I'm not on Facebook but my husband is so he will find me that Long Covid support group. Its good to read about people who are going through similar symptoms as yourself. Yes AB's made no difference whatsoever. Thank you for telling me about this group.

[Bluespots]

Hi, thanks for comment. Also symptoms of ME, which I have had for 30 years, but seems exaggerated and tiredness, before exertion ( as opposed to fatigue after exertion ME) I suppose we will never really know. I have been taking extra vitamins etc.....particularly high dose vitamin c. Seems to help. Take care too.

[DoeStewart in reply to Bluespots]

Just a thought, I saw an article on TV recently, think it had been on This Morning programme. It was the guy who used to be the resident Dr on there, I think it was a Dr Steel? He recommended vitamin B and also the best Co-enzyme Q10 you can afford for the fatigue? No idea if it works but I'm going to give it a go, I already take vitamin B so will add in the Co-enzyme when it arrives. I also take vitamin C and D - lets hope we both on the road to recovery soon.

[Bluespots]

Hi, I already take all those. Yes hopefully, it willl stop raining in 2021 and we will start picking up again. Regards.

[DoeStewart in reply to Bluespots]

Haha yes. Regards to you.

[Beads]

I haven’t seen anyone else ask, had you taken your levo the day of the hospital test? How long before the blood draw was your last dose?

[DoeStewart in reply to Beads]

Yes I had my Levo about 5:45am, ambulance about 9:20 and bloods taken about 10:30. I knew the test would be incorrect but not by that much

[Beads in reply to DoeStewart]

None of us know how much it goes up by. If we still had working thyroids we’d get a constant trickle, but with a single dose each day our levels are going to rise sky high, then settle back down as it’s bound and absorbed into cells. The only way for us to find out is to invest serious money in a couple of dozen kits and do a finger prick every hour for a whole day. This might be totally normal for you. I think I’d be questioning the endo.

[DoeStewart in reply to Beads]

Trust me, if I hadn't been so unwell I would have queried his decision but at the moment I am in no fit state to question anything. Once I've done my 4 weeks of 75mg and been tested again then hopefully I will have a better idea of what the heck is going on.

[Dillongirl]

Thank you for raising this question. I've read most of the replies to your post and can relate to many of the symptoms mentioned. I too had Covid early March upon my return from Bulgaria. I rang my practice and was told that Bulgaria wasn't on the list so I probably had an odd type of cold. Told to stay at home, rest, drink plenty of fluids and if it didn't go in two weeks to ring again. So I never did get a test - wasn't too ill and apart from sudden bouts of tiredness which meant I just had to sleep in the day I appeared to get over it. BUT I too have had one symptom or another for the remainder of 2020 (may be still but appears better). I wonder whether I wasn't so badly affected as I take Vit C, D & zinc and a blood thinner anyway and as soon as I got a tickle in my throat I started taking Echinacea.

Symptoms were not so severe and appeared to clear after a fortnight when my sense of taste and smell came back. I gardened for short periods during the summer with long rests in between. Things like brain fog lifted around November. Otherwise, the main symptoms have been breath, heart, muscle related. Also very emotional for no apparent reason during September. Then end of October and during November previous symptoms seemed to return but worse and slightly different. Leading to all the tests I've had. Last week I wrote to my GP about this and asked to be referred to a long covid clinic but haven't had a reply. Oh yes and the antibody test (6 months later) was also negative. Good luck

[DoeStewart in reply to Dillongirl]

Hi there, I also take Vit C, Vit D, a good B complex and Magnesium. I am normally quite fit and healthy but the symptoms I had really floored me. I am slowly recovering, I tend to have one or two symptoms every week now - normally the cough or the fatigue, they are lingering the longest. Not had results of my antibody test yet, I know none of the tests are 100% accurate anyway. I hope you get something sorted with your health soon and begin to get well. Good Luck

[Dillongirl]

Yep sounds familiar. I found your post encouraging as I thought I may be imagining it all. some people are only too ready to point to age and I refuse to give in to that.

I'm 70 and normally quite fit and active despite having a pacemaker. I ski - maybe next year will be the last time, I swim - when allowed, cycle - during quiet times, I garden/split wood, practice yoga and now walk daily. Yes I do need to pace myself but this year I've been knocked sideways after doing any of these things. (except yoga - that helps and skiing - haven't gone) I just have to hope that it will all pass. Hence my changing my diet etc to help my system to fight back. Good luck to you too.

😀

[DoeStewart in reply to Dillongirl]

Aren't we both fortunate to be normally fit, well and active at our incredible old age 😂😂. I agree, I refuse to put everything down to age, if we are unwell then we should still be "treated", not dismissed because we are no longer 30. Keep on doing what your doing for as long as you can, I know the body is weak at the moment but I'm sure your spirit is eager. I send you a big hug and hope you are soon cartwheeling down the road. 😉

[Dillongirl]

I'm happy to be able to get on my bike. haven't cartwheeled since school 60 years ago! You too.