So, it’s not COVID...which is a relief...but wh... - Thyroid UK

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So, it’s not COVID...which is a relief...but why have I been feeling so bad?

Josephineinamachine profile image

Hi all. Happy new year (let’s hope it’s a good one!). I’ve spent the last 5 days feeling really down, with symptoms that I (naturally, given the current climate) attributed to possible COVID. Test has come back negative. I have lost my appetite, food tastes bad, I’m exhausted and have no energy at all. Horrible headache all the time. Could this be symptoms of hypo? Am on 50 mg thyroxine. Diagnosed not long ago with under active thyroid (October) TSH only just over range. No antibody test or anything else tested. 25mg initially then upped to 50mg on basis on symptoms rather than TSH results which had gone back into range. To be honest I may just be reacting to a lonely, cancelled Christmas and just be bloomin miserable, but it feels a bit more than that?

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Josephineinamachine
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SlowDragon profile image
SlowDragonAdministrator

50mcg levothyroxine is only a starter dose

Bloods should be retested 6-8 weeks after EACH dose increase

Dose is increased slowly upwards in 25mcg steps

Unless very petite, likely to need to increase dose at least twice, or possibly further

Time to get next blood tests

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

Ask GP to test vitamin levels

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).

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

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

Josephineinamachine profile image
Josephineinamachine in reply to SlowDragon

Thank you SlowDragon

SlowDragon profile image
SlowDragonAdministrator

guidelines on dose levothyroxine by weight

Even if we often don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Josephineinamachine profile image
Josephineinamachine in reply to SlowDragon

Thank you 😊

DoeStewart profile image
DoeStewart

Hi, I've had these symptoms (and more) for over 6 weeks now. I too have had negative covid tests. The consensus of the medical profession is that I have had covid in the past without symptoms but am now suffering from Long Covid with all the symptoms? I am due to have an antibody test on 12th January at my GP surgery, these tests aren't advertised at our surgery but when I asked it was available. I have no idea whether I have had covid or not but if I havent then there is another bug doing the rounds with the same symptoms. I am having some better days now so hopefully on the mend but goodness me it made me feel very ill. I wish you better health,, be kind to yourself and rest when you have to. I found nothing that clears the headache and mine is still there after all this time. If you are under medicated this will just be adding to your problems. Good luck.

Josephineinamachine profile image
Josephineinamachine in reply to DoeStewart

Hi DoeStewart thank you for your reply. I’m sorry you’ve been feeling awful too. Long Covid is a worry. Will the test show that you’ve ‘had’ Covid then, if you’ve had it?

DoeStewart profile image
DoeStewart in reply to Josephineinamachine

I have been led to believe it will show up in the antibody test.

Josephineinamachine profile image
Josephineinamachine in reply to DoeStewart

Well it would be good to know! It’s the not knowing that drives people up the wall as well as feeling bad! Good luck 😊

DoeStewart profile image
DoeStewart in reply to Josephineinamachine

Thank you. It was the Doctor in the hospital who told me to get antibody test as I have had 2 negative covid tests ( I have been told these tests are not accurate? ) I have symptoms of covid which have continued for over 6 weeks so hopefully antibody test will confirm or not if I have had Covid. Unfortunately the NHS are putting everything down to covid but as someone on the forum has already mentioned, there are numerous bugs doing to rounds at this time of year anyway . I did ask the Dr at hospital what if the test is negative - her answer was that it is another virus then but we don't know what. Good Luck to you.

Localhero profile image
Localhero

Just to add to what the others have said above, I had similar symptoms recently and also tested negative for COVID. However, my endo told me that the tests are unreliable so it may well have been COVID. Also, he reminded me that, although we’re all currently fixated on one virus, there are actually lots of viruses still in circulation. If I were you, I’d look after yourself as if you had flu. Meantime get an appointment with your GP to review your thyroid medication which is really low.

Josephineinamachine profile image
Josephineinamachine in reply to Localhero

Thank you Localhero. Will do. You’re right - there are other things around not just Covid! I hope you’re feeling better now :)

Lora7again profile image
Lora7again

I have also heard some of these tests are unreliable and sometimes you need to take more than one. There was a news item on tv a few months ago where 3 young men were trapped in Italy because they kept testing positive for covid even though they had no symptoms. They were trapped there for months because of this.

fuchsia-pink profile image
fuchsia-pink

Sorry you're having a miserable patch in these horrible times. I can't add to what others have said - but hope you feel better soon. Am sending you a big (socially distanced of course) hug from the south coast x

Josephineinamachine profile image
Josephineinamachine in reply to fuchsia-pink

Thank you! 😊

SlowDragon profile image
SlowDragonAdministrator

Restless legs suggests low magnesium and or low ferritin/iron

Low magnesium often goes with low vitamin D

Josephineinamachine profile image
Josephineinamachine in reply to SlowDragon

I did try all the supplements when the RLS started and was low in B12 once upon a lifetime ago. I supplement now but not magnesium. Need to get this all checked now! Thank you 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Josephineinamachine

If supplementing B12 .......look at also supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 is under 500, or Active B12 under 70, perhaps consider also taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

cytoplan.co.uk/shop-by-prod...

amazon.co.uk/Jarrow-Methylc...

healthline.com/nutrition/me...

Josephineinamachine profile image
Josephineinamachine in reply to SlowDragon

Thank you 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Josephineinamachine

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

healthline.com/health/restl...

Web links about taking important cofactors - magnesium and Vit K2-MK7

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Low Vitamin D and low magnesium often go together

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Come back with new post once you get full thyroid and vitamin results

I will thank you...I’m due another NHS blood test soon. Is it worth it do you think to do a private test at pretty much the same time as the NHS test? Then can compare?

in reply to Josephineinamachine

I do this.

My surgery only tests TSH so I do a full Thyroid and vitamins test privately via thriva the same morning. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Josephineinamachine

See what you get tested by GP

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Likely to need next 25mcg dose increase in levothyroxine after test results

Just testing TSH is completely inadequate....unless TSH is high and then clearly shows you need next dose increase

My friend just had a positive result. Absolutely no symptoms, feels fine, and hasn’t been anywhere ... 🧐

Bearo profile image
Bearo

not being given under the same conditions as it was approved

Interesting...can you add a bit more about this?

helvella profile image
helvellaAdministratorThyroid UK

If you are not a subscriber, that link doesn't allow much to be seen - just the headline, really.

Discussing the precise dosing regimes, who decided what, efficacy, etc., is not really appropriate to Thyroid UK.

Issues of vaccination as they apply to people with thyroid disorders are appropriate.

Bearo profile image
Bearo

Thank you, your explanation answered my question perfectly.

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