Good morning, could I get some advice on a recent blood test?
The blood test last week was for electrolytes and blood count, but I also suggested a cortisol test as I have a suspicion that my level are a bit off atm. They also done an unexpected tsh and t4 test that I wasn't prepared for and had taken my levo that morning and hadn't stopped biotin, so the results are not reliable.
Test taken at 09.30 after being awake since 03.30 (thank you insomnia):
Plasma cortisol level 135 nmol/L (100 - 1000)
Tsh 0.01
T4 14.3 (9 - 19)
My GP was understandably concerned about the cortisol level so consulted with a specialist (cough, tern used loosely) NHS endo. Their response was, oh that's fine, I've been up a few hours so it's OK to be that low. And while their at it, I'm over medicated and should drop my levo dose and, by weight, I should be on a LOWER amount than the current 100mcg that I'm on. The biotin aspect was totally ignored. I have zero faith in this endo!
I had a mini argument with my GP who is happy(ish) to leave my levo alone but they won't investigate my cortisol further.
Is my cortisol OK at this level or do I need to push for further investigation?
TIA x
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J675
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I've got a Medichecks thyroid test waiting to be used, but due to the eating disorder recovery and having to stop my t3, I'm waiting for my current dose to stabilise before I do it. I'm going to find it hard financially to do a private cortisol test as well, so given my latest results, is this be something that I should pursue through my NHS GP?
I was taking 12.5mcg Grossman t3 (in two doses) with 100mcg Aristo t4 until a couple of weeks ago. I stopped the t3 pretty quickly as the anxiety and headaches were getting pretty intense, culminating with a 4-day migraine last week. Every time I took some t3, even 1/8 of a tablet, I was ending up with really bad anxiety and headaches a few hours later. The blood test last week was about 2-3 days after finally stopping the t3. It wasn't a thyroid test that I had warning about and I did try to make my GP understand that the results wouldn't be reliable for a lot of reasons... Not that they listened to me.
I know that my tsh/t3/t4, levels are all over the place atm due to what I'm putting my body through (mild refeeding syndrome) and having to drop the t3. It's the cortisol result that I'm ignorant about, and although I know it's related to everything else going on, it seems too low to me.
I have never seen a reference range for early morning cortisol in blood that is as low at the low end and as high at the high end as that before.
I wonder if the range you've been given is the "random cortisol test" range rather than the range specific to an early morning result.
I always think that the random cortisol test range is a complete cop-out and totally useless. They have absolutely no idea what they should be comparing the result to so they just give this enormously wide range that is totally meaningless. The cortisol levels of a healthy person at 9am are many times higher than at 3pm or 10pm for example.
Regenerus work like most companies. You order a test, get sent a test pack, do the test at home following their instuctions, post it off, and get sent your results via your account with them or via email.
Personally I would use Regenerus because they deal with the public directly. But if you want to use Genova the instructions on how to do so can be found here :
Make sure to read the info up to the point it mentions Regenerus.
When using a private saliva test you can get the test pack and use it on a day when you haven't suffered insomnia for hours and your getting up time is "normal for you".
Or you should ask the company you buy from how they suggest someone with severe insomnia should deal with the timing issue.
Once you have produced a saliva sample at the appropriate time you have to freeze it.
As a result of the fact you have to freeze the samples you can actually do the test whenever is convenient for you despite your insomnia. So, (I think) you could do it on a Wednesday and post off the frozen samples on a Monday.
But be aware that a saliva test should be done on a "typical" day rather than a good day.
I hope I haven't given you out-of-date information. I haven't done a saliva test for a long time because I have a very dry mouth and can't produce enough saliva for the samples.
Another thing you can do with a saliva test - if you realise you have made a mistake for some reason you can rinse out the little tubes, let them completely air dry, and do them another day.
With the current postal strikes it might be best to send your samples back by courier. I have no idea how much that might cost though, or how one finds a reliable courier.
Regenerus include details of a courier in with the test kit (it might be Fedex but can't really remember).
I tried to use them once, you ring the number given to arrange pick up, but it's an automated system so you don't get to speak to a human. When I tried I couldn't arrange it, not sure if they didn't like my post code (quite rural area but we are covered by all the usual companies) but it was a frustrating experience ending with me giving up and using Royal Mail's Special Delivery Guaranteed Next Day which was quite a bit cheaper.
Thanks extra info. My results on Patient Access just say "plasma cortisol level" with no time reference. 🤔
I'll have a look at the Regenus test and if I don't have some level of miraculous improvement in the next few days, I'll try and scrape up the pennies to get tested. Even if it shows there's nothing untoward, it'll put my mind at ease at least.
Be aware that doctors generally don't pay attention to saliva tests so you will be doing it for your own benefit.
This is a reply I gave to someone else who did a saliva test a couple of years ago. It might give you an idea of what you might expect to get and what information you can get from the results.
That's been an interesting read, especially where the poster said about their symptoms including extreme migraine. I had The Worst migraine pain wise I can remember last week and I'm still headachy with disturbed vision. It's hard not to have health anxiety reading through their posts.
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Cortisol 46 advice please
Help, feeling so despondent.
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