Have I got Covid 19, M.E. or a Thyroid problem ? - Thyroid UK

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Have I got Covid 19, M.E. or a Thyroid problem ?

Simonron profile image
24 Replies

Has anyone been tested specifically for T3 levels in their urine ? My Mother's experience shows this could be important. I note that today T3 is only tested in blood - and not often. torty.org.uk/m-e-joy-anthon... tells her story and a bit of mine. I have an enlarged Thyroid and can't stay awake. Biopsy next week. So, at this stage I am just saying hello. My C19 Swab and antibody tests report negative.

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Simonron
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SeasideSusie profile image
SeasideSusieRemembering

Simonron

I had a 24 hour thyroid hormone urine test back in 2015 with Genova Diagnostics. My thyroid blood test showed obvious signs of poor conversion of T4 to T3, the urine test confirmed it.

nightingale-56 profile image
nightingale-56

I remember being at this Conference and on seeing your Mother's name knew where I had seen her. It was a most enlightening day for me and pressed me to seek further treatment. I had met Lyn Mynott previously at Colchester at a meeting she had arranged to talk about Thyroid. I have had great help from Thyriud UK and never fail to recommend the Charity to people with Thyroid problems and those who only think they do.

I wish you and your Mother well.

Simonron profile image
Simonron in reply to nightingale-56

Wow. As I said in my comment on the site, we have no idea who my Mother may have helped. Wonderful to read you may be one of them ! Sadly my Mother is now in a nursing home in Jersey and has terrible short term memory problems - long term too I think, but no one there knows her well enough to judge that. I will try and tell her about you. Many thanks.

SlowDragon profile image
SlowDragonAdministrator

Really interesting that urine test can reveal issues that blood tests can’t

This may be extremely useful route to consider for many members with “normal” thyroid test results

Simonron profile image
Simonron in reply to SlowDragon

That was many years ago. I think the company that did the test mentioned in my mother's piece closed a long time ago. I don't think urine is tested by the NHS at all even now, and T3 in blood - seldom.

SlowDragon profile image
SlowDragonAdministrator in reply to Simonron

Urine testing is still done for cortisol

Interesting....will see if can find any company offering thyroid testing in urine

Yes most members get full thyroid and vitamin testing privately to make progress

SlowDragon profile image
SlowDragonAdministrator in reply to Simonron

First place I looked offers urine testing

Genova testing

gdx.net/uk/product/urine-th...

gdx.net/uk/product/urine-th...

jconnor123 profile image
jconnor123

if you had " normal " blood tests like me , with a slightly higher than normal tsh of 3.2 - 3.3 . if this urine test showed low thyroid hormone would the doc take the results seriously instead of looking at blood ? this could be really promising for a lot of people me included if so. thanks for posting this

humanbean profile image
humanbean

I've never done a urine test for thyroid hormone levels. This is because I've never known how urine test results for thyroid hormones are interpreted.

Just a made-up example and a what-if scenario :

Suppose I have a blood test that shows optimal levels of Free T4 and Free T3.

On the same day that the blood sample is taken for the blood test I do a urine test and collect 24 hours worth of urine. Suppose the results of the T4 and T3 in urine are in the top third of the range. If low levels in urine are not good, then are results well up in the range good?

This set of results implies to me that my body isn't making use of the T4 and T3 it has and is excreting it, which doesn't sound good to me. But low levels of T3 and T4 in urine are bad aren't they? So high levels should be good?

**Head explodes**

Simonron profile image
Simonron in reply to humanbean

My Mother is in no state to know what day it is, or remember me sometimes, so no help there. I trust there is part of the NHS that can be convinced to give urine tests another try. I know nothing more than I have written already - yet...

humanbean profile image
humanbean in reply to Simonron

I forgot to say...

Welcome to the forum. :)

humanbean profile image
humanbean

There is a urine test for thyroid hormones still available from Genova Diagnostics UK.

gdx.net/uk/product/urine-th...

For info on how to order one, see this link :

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

humanbean profile image
humanbean

Are we saying that our FT3 and FT4 levels can be optimal in blood tests but that these results are less accurate than urine tests?

That was really my point - I don't know how to interpret urine tests for thyroid hormones and they have never really caught on on thyroid forums so nobody is coming forward and saying "This is what the results mean in various scenarios".

I suppose the other problem is that urine tests should be carried out in conjunction with blood tests, making the whole testing process far more expensive.

Simonron profile image
Simonron in reply to humanbean

Yes, that's what my mother thought. I can't see how T3 can be OK in blood but not in urine or why that matters, but, looks like it matters a lot !

humanbean profile image
humanbean in reply to Simonron

I'm sure you're right.

fibrolinda profile image
fibrolinda in reply to humanbean

I did blood and urine on same day a couple of years ago, blood showed free t3 and free t4 at top of range and urine showed them barely scraping into bottom of range but couldn't find anyone to interpret what that meant😕 So interesting waste of money really😬

humanbean profile image
humanbean in reply to fibrolinda

Yes, it's annoying when we realise we've wasted our money. I've done it a few times and I get angry with myself every time it happens.

Simonron profile image
Simonron in reply to humanbean

Presumably the money is wasted - not due to the results but due to the lack of possible action resulting from them.

fibrolinda profile image
fibrolinda in reply to Simonron

Indeed, I thought I'd found the reason I still felt so ill, maybe not absorbing? But no way of acting or even confirming so... Sigh....

humanbean profile image
humanbean in reply to Simonron

Yes, that's what I meant. Test results are meaningless if we don't know what they are telling us.

SlowDragon profile image
SlowDragonAdministrator

The cortisol urine test (still used by NHS) is to see if over all cortisol output for 24 hours is too high (eg for possible Cushings disease) not sure if it’s also used to detect low cortisol

If thyroid blood tests are borderline ....I guess urine test might be helpful

penny profile image
penny

I was diagnosed by symptoms (private doctor) and then confirmed with 24-hr urine test. These were interpreted by the private doctor and sent to my GP. After several years of thyroid meds my GP wrote to me saying that as I had never been diagnosed as hypothyroid, despite having NDT, T4 and T3 prescribed by my GP, I could no longer have any medication. There was some mention of ‘foreign’ labs.

Simonron profile image
Simonron in reply to penny

We simply must get the NHS to accept other professional advice. This is definitely going to happen anyway as 'Expert systems' - that is, computer data stores of master humans in their specific fields being used in place of the human master. When Artificial Intelligence , pattern recognition is added to this data base the recommendations generated are frequently far better than the average consultant - because it as been programmed by the best consultants. When GENERAL AI comes in, oh heck - the computer becomes the best consultant by teaching itself. This is being brought online now. We just have to wait for it to impact us directly !

Hillwoman profile image
Hillwoman

I've done the Genova 24 hr urine test twice in the past dozen years, at the behest of Dr Peatfield (retired) who interpreted them for me. I think I may have had private blood tests around the same time, but certainly not on the same day.

Dr P considered the urine test much more accurate than the blood test, but I wish now that I'd asked for more information about his reasons.

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