Long covid

[Longinthetooth]

Interesting to read this week about the lady with long covid & had to reduce her thyroxine. I got covid in March which lingered a couple of weeks & went but then returned & I realized that I had long covid. Obviously, like the rest of us we attribute all bad days to the thyroid. I also reduced my thyroxine from 100 to 75 as I seemed to be over-medicated (after a good few blissful months). I would say that I've been free of long covid for a week now but am wondering if I may now be under-medicated as the usual mild headache is kicking in, etc. Not sure what, but thought I'd throw this out there. By the way, I am having blood tests at the end of December because I reduced my meds without asking the doctor. Capital offence.

[SlowDragon Administrator]

Covid seems to reduce vitamin levels

Low vitamins results in poor conversion of Ft4 to Ft3

High Ft4 can make you feel wired or hyper

Suggest getting FULL Thyroid and vitamin testing done yourself now

what vitamin supplements are you currently taking

When were vitamin levels last tested

GP unlikely to test more than TSH

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

plus both TPO and TG thyroid antibodies tested at least once

Do you have autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins (and antibodies if never been tested) 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Longinthetooth in reply to SlowDragon]

Thanks for replying once again & supplying the info.I've been with this doctor for 2 years after having moved house & he also follows the guidelines only. I write to this site to get the extra information which is invaluable. I have secondary hypothyroidism after having pituitary surgery but my mother has an under-active thyroid which I new I had before my surgery. No one believes you!

[SlowDragon Administrator in reply to Longinthetooth]

well you have to manage this by self testing

No good relying on a GP who only tests TSH

Or you need to request testing now and request they include vitamin D, folate, ferritin and B12

With secondary hypothyroidism it’s ESSENTIAL to test Ft4 and Ft3 always

Examples of other members private test results

healthunlocked.com/search/p...

blue horizon

healthunlocked.com/search/p...

[Longinthetooth in reply to SlowDragon]

Thanks you.

[Longinthetooth in reply to Longinthetooth]

Thank you.

[Longinthetooth in reply to SlowDragon]

I get slight earache when my levels are out which has happened today. Usually a good sign for me. Is this common with the thyroid?

[SlowDragon Administrator in reply to Longinthetooth]

Feeling deaf and ears full is quite common hypothyroid symptom

There’s over 300 different symptoms

Fortunately we don’t get them all

hypothyroidmom.com/300-hypo...

thyroiduk.org/wp-content/up...

[Longinthetooth in reply to SlowDragon]

Ok

[TaraJR]

I had the Moderna booster in October, and then had definite symptoms of being hyper again. (I've been hypo for decades and I take T4 and T3) I did a Medichecks test - T4 was high, T3 wa5 over range and TSH was 0.001. All had changed since September but I was on the same doses. I reduced my T4 and T3 a bit. I feel better now after about 4 weeks. I may increase my meds again, I'll wait and see.

The same thing happened with the Pfizer booster last October. The MRNA seems to affect my thyroid levels. Interesting, and annoying. But I'm sure it's 'a thing'.

[Longinthetooth in reply to TaraJR]

Thanks for replying. Slow Dragon said that because I had long covid that would mess up my vitamin levels & cause me to be hyper. So good to get the advice off this site as we can be in the dark. I don't usually alter my levo unless advised by the doctor after blood tests, etc, but on this occasion I did & have today, increased back to my pre covid level. I've got blood tests arranged for the end of Dec/Jan. I'll wait for 6/8 weeks now for my levels to correct. Hope you continue to improve. It's the time it takes for our bodies to balance that's a pain but if anyone has patience it's us lot. Such fun!

[MEguy in reply to Longinthetooth]

Do you have Long covid. You said it cleared up. You have a thyroid problem not long covid. Kate Garraway's husband has Long covid! He's had it 2 years or more now I believe. There are microclots been found in the blood in long covid.

[Hidden in reply to MEguy]

Kate Garraways husband is the obvious, extreme of Long Covid, using him as an example is disingenuous.

Are you able to provide the proof that Long Covid is a life long condition, please?

[MEguy in reply to Hidden]

I don't know what Long Covid is so I have no idea how long it lasts. It can be a few years or more from what I have heard. Hopefully they will work out what's gone wrong. They say they have found microclots but doesn't everyone have those?

[Hidden in reply to MEguy]

So how can you say Longinthetooth doesn't have or didn't have Long Covid?

I see you've edited your post to be less inflammatory.

[Longinthetooth in reply to MEguy]

Ok

[Longinthetooth in reply to MEguy]

My doctor said the symptoms were indicative of long covid. I also have a thyroid problem. Funny though, the aching back, shoulders, lethargy, etc, have fortunately gone. Just left with a thyroid disorder now! You don't know what you're talking about. Kate Garraway's husband has a serious, serious form of long covid. If you check online millions of people worldwide are suffering with long covid conditions, be it from very mild to the more severe. But, thank you for your response.

[MEguy in reply to Longinthetooth]

I know they have approved an extremely expensive drug called Ampligen to treat Long Covid in the US. I heard it has been approved the other day.

[Longinthetooth in reply to MEguy]

Hope you're fortunate enough to not need Ampligen.

[MEguy in reply to Longinthetooth]

I had ME for 16 years before it cleared up. Don't know why it suddenly did to be honest but I went through a bad time for a long time.

[Longinthetooth in reply to MEguy]

I can imagine. One does wonder if long covid is similar.

[MEguy in reply to Longinthetooth]

what are your Long covid symptoms? Do y ou get neurological symptoms with Long covid like you do with ME?

[Longinthetooth in reply to MEguy]

Do you really want to know or deny that me & so many others had/have it? I can imagine that your years of suffering with ME we're awful & to he over it must make you want to grab life by the horns.

[tattybogle in reply to MEguy]

So ... you had ME and it got better .. but you have no idea how .

You have no idea what long covid is , but you feel able to tell other people they categorically don't have it .

You don't have a thyroid problem , but you decided to come on a thyroid patients forum anyway , and proceed to suggest they take antipshychotic drugs (aripiprazole) that are being trialled for ME ,despite those drugs having know effects on thyroid hormone levels .....

Have you always' been this arrogant or is it a new symptom ?

[MEguy in reply to tattybogle]

Tatty I was trying t o help that person by suggesting aripiprazole because she or he said they have BOTH ME and hypothyroidism and I did not know that aripiprazole can affect thyroid function. I am also not denying anyone has Long covid I was speculating that Longinthe tooth only has a thyroid problem but he or she says that it is both long covid and a thyroid problem so I am happy with that. Hence my last question about long covid symptoms to longinthetooth

[tattybogle in reply to MEguy]

Maybe so , but it's neither safe or helpful to suggest medications you have no experience of to people with health conditions you don't understand , unless you also make it VERY clear you have no personal experience of it and know nothing about it's suitability.

your previous suggestion to Pen1966 re. "Try aripiprazole if you can get it .." made no mention of how little you knew about it ,.... it sounded like a firm recommendation.

Also .. i think you are splitting hairs by saying were not denying anyone has long covid ... the reply above seems to say exactly that.... "You have a thyroid problem, not long covid.. "

if you re-read the guidelines we all agreed to for using this forum and bear them in mind when replying to people, your help may be better received in future :

" Forum guideline 18. If possible, show a clear distinction between personal experience or opinion and evidence-based information.."

"People MAY be able to evidence some of their information by linking to research, reliable websites or quoting from well researched books and if at all possible this should be done when making 'definite' statements.

Just because something worked for you, this categorically does not mean that it will work for everyone. Please remember this when you post."

[Longinthetooth in reply to tattybogle]

Silly Billy. But his forum name says it all.

[MEguy in reply to tattybogle]

OK thanks for explaining the rules to me. I will use them when I post in future.