I'm so happy to have found this forum! Looking for some advice please on private testing.
I suspect my thyroid function and possibly adrenal health has been poor for quite a long time, probably declining since late teens (I'm now perimenopausal, at 47 years old). My worst symptoms include brain fog and difficulties with memory and organising my thoughts. Writing this post is... tricky!
I've had several TSH tests in the past and they've come back normal when I've felt anything but. I resorted to self-treatment by taking a strong multivitamin, liquorice, Vitamins C & D, 5HTP, CoQ10, Omega 3/6/9. I also recently consulted a dietician who advised to stop the liquorice, C & D, Omegas, and I ran out of 5HTP so stopped that too and then thought I should stop all the supplements as I wanted to get tests. Don't know if it's coincidental or not but having done that, a few weeks later I feel absolutely awful - constipated, foggy and exhausted, I'm actually sleeping a bit more soundly but that's because I hardly wake up.
I have moved a lot over the years and haven't discussed my thyroid/adrenal issues with the current GP although I have seen him a couple of times over the year to start HRT which hasn't consistently helped anything much.
I really need to get to the bottom of this but with my brain feeling so foggy it's hard to sort it all out. I've seen recommendations to get some tests such as TSH, FT3, FT4, Thyroid antibodies and cortisol levels via saliva tests which I can easily see the reason for. But I've also seen suggestions to test for RT3, B12 & D3, 4 x iron tests, Magnesium, Potassium, Sodium levels, sex hormones, MTHFR, inflammation... can anyone help with indications for why you would or wouldn't need these tests, please? Some of them seem hard to source in the UK and quite expensive. Would you go for the "basic" tests and then get other tests done if it seems to be needed? Is there a hierarchy with some being essential and others less useful?
And as I felt so much better on my supplements, which would you restart and which do I need to stop before testing and for how long? I keep trying to read up but am struggling to make head or tail of it all.
Finally, would you advise speaking with my doctor before arranging tests, or waiting to get the results and then speaking with him?
Very grateful for any and all advice
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FoggyThinker
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For now, my suggestion would be to stay off supplements, test the full thyroid/vitamin panel and do a 24 hour saliva cortisol plus DHEA test. This will give you the basics. It will tell you your thyroid status, the state of your adrenals, and whether or not any of your key nutrients are low or deficient. Post all results, including their reference ranges, on the forum for us to comment. Further guidance can then be offered.
For the full thyroid/vitamin panel the two most popular tests are, and they're comparable so you could choose either:
Both tests include the full thyroid (TSH, FT4, FT3, Thyroid antibodies) and vitamin panel (Vit D, B12, Folate, Ferritin). They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Forget reverse T3 testing, this is a bit of a red herring. It can tell you if your rT3 is high but it can't tell you why. There is only one thyroid related reason for high rT3 and that is if there is an excess of unconverted T4, and the thyroid panel which includes FT4 and FT3 will show that anyway.
Both of these tests can be done by fingerprick at home, or for extra cost you can arrange phlebotomy.
If you want to do the fingerprick test I have some tips to help, just ask if you want me to post them.
Always advised here, when having thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
**
For the cortisol plus DHEA test then there are two companies offering this test - Regenerus and Genova Diagnostics. Again basically the same test. Regenerus email you direct with the results, Genova send them to ThyroidUK who then send them on to you when you've given them permission. Details here:
Finally, would you advise speaking with my doctor before arranging tests, or waiting to get the results and then speaking with him?
Personally I wouldn't, I think your GP may dissuade you saying that private tests aren't reliable, then offer you a few tests which wont cover everything you need.
There's no saying your GP will accept the results of your private test (some do, some don't) but even if he doesn't if there are any abnormal results your GP can then be invited to do his own test and you'll have guidance from us on how to move forward.
Huge thank you, that is exactly what I needed - your advice is very clear and all in one place and my poor addled head has managed to absorb it. YES PLEASE I would love to see the finger prick advice, I've never done one and am a little nervous!
Some people can easily do a fingerprick test, some can't, but you wont know unless you try. If it fails the company can send a replacement test to try again or you can change to venous blood draw if you would rather pay for phlebotomy (check that as I haven't looked lately).
I don't have trouble doing them, sometimes the blood flows more easily than others, sometimes I would be able to easily fill two microtainers although sometimes only one. The microtainers require 0.6ml or 0.8ml of blood (for comparison a teaspoon is 5.0ml, so it's a very small amount needed).
Here are my tips:
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style, should make the hand tingle (well it does with me!)
* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf or use an ironing board to get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. Middle finger seems to be best for me, if flow stops I then go on to ring finger.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, at the same time try and make a very slight twist with the lancet (the blade retracts very quickly so you have like a nano second to twist the lancet). I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.
Sometimes the sample has haemolysed, ie the red cells rupture. This may be due to:
* bacteria (so clean area thoroughly and allow to dry)
* intense exercise (so don't go mad trying to get the blood to flow prior to the test)
* squeezing the finger to get the blood out (you can gently "milk" the finger but don't squeeze)
* shaking the tube vigourously instead of gently inverting it.
* sample collection was prolonged
* if there was a long delay between sample collection and analysis
* there is too little blood in the tube and too much coagulant for the amount of blood
Sometimes there's not enough blood in the tube to do all the tests so it's important to fill the tube to the line.
The Medichecks tube requires 0.6ml of blood, the Blue Horizon tube requires 0.8ml of blood (at least they did last time I used them).
Read the Ts and Cs of both companies before ordering.
If you have doctor's comments it delays the results by 24-48 hours, we generally say don't bother as you'll get a better interpretation here.
Both companies tend to use the same lab for processing the tests - Eurofins County Pathology, occasionally The Doctor's Laboratory, so there is no difference there.
Don't do the test in a heatwave, the high temperature may spoil the blood.
Only do the test on a Monday or Tuesday and send back to arrive next day to avoid delayed delivery and the sample hanging around over a weekend when the labs don't work.
A Tracked24 return envelope is included in the kit. This doesn't guarantee next day delivery. I always go to the Post Office counter and purchase Royal Mail's Special Delivery Guaranteed Next Day by 1pm, it costs about £6. You get a receipt with tracking number and you can track the package. If it doesn't arrive the next day you can claim a refund on the fee.
Many thanks again SeasideSusie, that's really helpful (especially with the heatwave this week, I guess that gives me a bit longer to get my tests ordered anyway!!)
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