Thyroid UK

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Meaningless Private Tests

Hello,

I'm wondering if there is or has been a list for new members, of private tests they shouldn't pay to have, since the way the results are presented tells them very little?

Medichecks Cortisol I'm looking at YOU!

Perhaps on a notice -'Read This Before You Pay for Private Tests' pinned somewhere up high?

Could be added to and edited (if companies pull their socks up).

Can't bear the thought of even more companies making money off ill people (supplement companies are getting a hard stare too 😳).

The survey Charlie-Farley posted has got me all belligerent.

Written by

Sneedle

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29 Replies

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Charlie-FarleyAdministrator11 days ago

Errrr! don't blame me!😂

Sneedle in reply to Charlie-Farley11 days ago

😂my husband would say it doesn't take much for Belligerence to arise😁

Charlie-FarleyAdministrator in reply to Sneedle11 days ago

Yes I'm a bit of a 'senora grande cajones' My poor hubby 😱😂

Charlie-FarleyAdministrator11 days ago

Seriously though, I would say it's shifting sands, so the best bet is to pop a specific post up as and when. If it needs to be responded to by private message I'm sure we can do what happens with medication sourcing and turn replies off. Though more general conversations on pros and cons of types of test rather than who does them will be fine 😉

Sneedle in reply to Charlie-Farley11 days ago

Hi Charley-Farley I wrote you a reply then my phone glitched and I lost it! - please see my answer to Red Apple below😀

Sneedle in reply to Sneedle11 days ago

Sorry just seen I spelled your name wrong

RedAppleAdministrator11 days ago

Sneedle, 'Perhaps on a notice -'Read This Before You Pay for Private Tests'

I've only ever used private testing for basics like thyroid, vit D myself and have never had an issue with these tests. Can you elaborate on your observation that there are 'meaningless private tests' please? What is it that has made you so upset? Presumably your were expecting something that you didn't get?

Sneedle11 days ago

Hi there,

As part of finding out what is going on healthwise, I knew before buying any tests that cortisol would be good to have as I wanted to check out adrenal fatigue since a nutritionist I see form time to time mentioned it to me.

So when looking for tests here I went with Blue Horizon Gold Premium which included cortisol. However when continuing my trundle gathering info from this group, I learned that BH only contains a snapshot of one blood cortisol reading and nothing much can be gleaned from that.

So I then decided to buy a separate saliva cortisol test as recommended here, to find that the one I chose (Medichecks) is not useful as it doesn't give ranges for two of the four results, using the vague less than/more than system. It also doesn't include DHEA which I didn't know anythig about, it being necessary to determine the general direction of adrenal fatigue.

I've just found this post from Seaside Susie

healthunlocked.com/thyroidu...

(by checking on Google, not in the search box here) where it mentions Medichecks Saliva Cortisol is not really that helpful.

So I'm specifically talking about these two tests for cortisol which have not yielded useful info and since I paid for two tests for myself and my daughter, I'm doubly out of pocket on the Medichecks one.

My point being these companies are recommended here and that is fine, but for this test they are not helpful particularly medichecks which is a waste of money. So I was wondering in my post how other people could be warned of this while they are going through the 'choosing a private test' process (knowing nothing about how any of this works).

Jaydee1507Administrator in reply to Sneedle11 days ago

It's really difficult when you're just starting out with the diagnosis. So much to learn, so many pitfalls and dead ends. Supplements are similar and I could probably write a post by now of a number of pitfalls that people fall headlong into with those. There are so many details to get your head around that its hard to know where to look next even. All that and you have brainfog at the same time so no wonder mistakes are made.

If you're looking to investigate a particular aspect of this condition then do make a post and ask for specific advice on that subject. There are so many experienced and knowledgable members here willing to help you find the right path.

I hope you find the right tests and above all the answers to what you seek.

RedAppleAdministrator in reply to Sneedle11 days ago

Sneedle 'My point being these companies are recommended here and that is fine, but for this test they are not helpful'

it's certainly the case that private testing is encouraged here, simply because the NHS testing is so dire and mostly non-existent.

Thyroid UK (the charity thyroiduk.org, not this forum) has negotiated discounts for us with various private testing companies.

That said, there are absolutely no official recommendations No-one here is qualified to do that. It is always down to the individual to research, ask questions and make their own decisions about testing. Look at the information provided by the testing company, ask questions here from people who may have taken the test themselves, and get clarification from the testing company if there's anything you're unsure of.

Sneedle in reply to RedApple11 days ago

I completely agree and I'm not suggesting that anything here is an official recommendation. It's people trying to help each other. However I certainly did my best to uncover as much info as possible but could never have foreseen this particular circumstance, which is why I'm raising it to save others spending money on this particular test. As it appears it has been mentioned before that medichecks saliva cortisol is not helpful. I did not come across that information since I could never have known to ask the question in the first place. And perhaps was like others, a bit unlucky in not coming across posts mentioning this.

So that's why I'm raising this about this particular test. I think it's important and would hate to think that I now know about this, but haven't said anything.

RedAppleAdministrator in reply to Sneedle11 days ago

Have you provided this feedback to Medichecks?

Sneedle in reply to RedApple11 days ago

I'm definitely going to. Plus send Thyroid UK a quick email as Medichecks is listed on their site as a recommended company and I think it's important they know. Perhaps they might put an explainer somewhere on their site that cortisol tests need to be a) saliva four point and b) also test DHEA in order to be a useful indicator of adrenal state.

RedAppleAdministrator in reply to Sneedle11 days ago

Do come back here and let us know if you get a response from Medichecks. From what I've seen here, they are a reputable company and will take your feedback seriously.

Sneedle in reply to RedApple10 days ago

Will do👍

KBird01 in reply to RedApple10 days ago

I raised an issue about how they reported on coeliac tests and their Chief Medical Officer called me! He definitely wanted to get things right and also explained the test itself.

QUE6T-33 in reply to RedApple10 days ago

I haven’t had a 24 hour Saliva Test in ages, but the Genova test I found useful. It did include DHEA & 4 cortisol samples. I wasn’t aware Medichecks did one & it’s a shame you found it lacking. These tests aren’t cheap are they. If anyone knows of other labs offering the 24 hour Saliva test with full results, grateful to know who they are as I’m due to have one done! And agree that it’s sensible to contact lab yourself to check out detail of test, but it’s also useful to read ‘customer reviews’, which is why this forum can be useful. Other members experiences can offer an insight cant they.

SeasideSusieAdministrator in reply to QUE6T-3310 days ago

QUE6T-33

If anyone knows of other labs offering the 24 hour Saliva test with full results, grateful to know who they are as I’m due to have one done!

Regenerus thyroiduk.org/help-and-supp...

QUE6T-33 in reply to SeasideSusie10 days ago

Thanks - I’ll look into them 😊

humanbean11 days ago

1) I wouldn't pay for a reverse T3 test from anywhere.

2) I wouldn't do a saliva cortisol test that

a) didn't include DHEA.

b) tells the customer that more than four samples are required. (I might relax that rule if it included a wakening response sample.)

c) Uses reference ranges for cortisol that start at zero for any of the samples. Having zero cortisol at any time of day or night is not a healthy result - and ranges are supposed to tell us what the "healthy" (hahahaha) range is for anything that gets tested.

3) I won't buy complicated tests that I don't understand if they are rarely, if ever, mentioned on the forum, on the assumption that nobody would be able to help me interpret the results. If I can't understand the results when I get them, then I've just wasted my money.

4) I wouldn't do a blood test for cortisol that took place before 8am and after 9am. A random cortisol test - e.g. one done at 2pm - has such a wide reference range that practically every test must return a "that's fine" response.

humanbean in reply to humanbean10 days ago

I've just thought of another test I wouldn't go out of my way to pay extra for...

Serum Magnesium (Mg) or Red Cell Magnesium.

If I found a test package that included Mg and I wanted all the other tests in the package done I wouldn't reject it because it included Mg.

If you look at Table 2 in this link

ncbi.nlm.nih.gov/pmc/articl...

It tells you that only 0.3% of the body's magnesium can be found in the Serum.

And only 0.5% can be found in the Red Blood Cells.

The body prioritises keeping the right amount of Mg in the blood and will steal it from elsewhere in the body if necessary. So, the soft tissue, muscle, and bone could be deficient in Mg but the blood tests for it would be unlikely to show a deficiency.

Horsecrazylady79 in reply to humanbean10 days ago

humanbean blood cortisol tests can be taken between 06.30am and 10am. The closer to 06.30 the better though.

humanbean in reply to Horsecrazylady799 days ago

If you look at graphs of the circadian rhythm of cortisol it hits a peak at about 9am. I know the graph I've given is cartoonish but the graphs I've looked at always suggest a similar time for the peak.

This link :

endocrinology.org/endocrino...

says this about cortisol :

It is well known that cortisol has a circadian rhythm, with levels peaking in the morning between 08.00 and 09.00, and smaller secondary peaks after meals.13,14 This diurnal rhythm can be affected by sleep and working night shifts.

Since the advent of the newer cortisol assays, we often see a low afternoon cortisol, and endocrinologists are frequently asked to assess hypothalamic-pituitary-adrenal (HPA) function. There is good concordance with 09.00 cortisol as a starter to define HPA function, which is why we generally advise standardised 09.00 cortisol measurement first off.15 However, if this does not yield an answer, it may be necessary to move to stimulatory tests, such as a synacthen test or insulin tolerance test.

I am aware that persistent insomnia and shift work can change the time of the peak, but I don't know if anyone ever tries to find the time of their own peak cortisol production or how they would do it if they tried.

Cortisol circadian rhythm

DubiousThistle10 days ago

another of their tests that reports a < less than, is estrogen. I actually contacted them before I took the test and asked them if it was always a figure rather than a less than or more then, and they confirm it was. But they report, <19! Yes I know thats low but if you want to calculate estrogen progesterone ratio it’s meaningless.

Customer feedback on any issues I feel would be very helpful.

Milkyway8810 days ago

Following as I’m interested in testing cortisol and one company advises stopping all steroids (including inhaled), then just refer you to ‘your functional doctor’ .

Horsecrazylady79 in reply to Milkyway8810 days ago

Milkyway88 you should never stop steroids if your on them for replacement reasons, I.e if you have Addisons or any sort of adrenal insufficiency, if they're just inhalers or for a chest infections then they do recommend and are perfectly safe to stop before testing. When I was first diagnosed with Addisons, I was asked to do a morning cortisol test and even though I had the test done at 9am, I was told not to take my morning dose, which meant my last dose was at 4.30 the night before. I was in intensive care that night as my cortisol levels had dropped so dangerously low they weren't able to detect them (usually under 27n/mol) I had gone home after my test and crashed, the hospital were ringing my mobile from lunchtime to tell me to go back in asap so they could get me on a drip, it took my husband (now ex lol) 4 hours to answer them!! I didn't know any better at the time, that was a hard lesson learnt!!

Mino4010 days ago

I have never paid for a test, the NHS and my private medical coverage has sufficed. Personally, I think too much testing feeds into hypochondriac behaviour.

suwinter in reply to Mino409 days ago

Personally, I would have stopped at sufficed…

You are very lucky, as not all GPs/ specialists are willing to carry out all tests. Plus of course, not all of us have private medical coverage. An interesting reflection might be - how much of your testing has been covered privately? That essentially is what we pay for “as we go”.