cortisol blood test tips?

[Judithdalston]

Any suggestions to adhere to for ‘9 am cortisol’ blood test being done at 7.40 tomorrow? I believe it is regarded as Addison’s or not, and nothing in between, so is there nothing that can be suggested to Gp if low but not too low? Did a private saliva test test some years ago now( pre covid) it was low , but in range, waking up, and always over ( x3 plus), noon, 4 pm, 11pm and then did own adrenal cocktail for a few months. So surely a 7.40 am test would only confirm the lowish morning levels if still like this, not mismatch at other times?

I have Long Covid problems, including high HR for some 4 1/2 years that the GP is trying to solve ( every other specialist signing me off despite diagnosed ‘postural hypotension’ with hypertension at rest) …his recent attempt has been to reduce levo.from 100 to 75 ( cont.with T3 5 x3) and reintroduce a hypertensive diuretic drug the Falls consultant had removed…so can I presume the recent stress of ‘meds’ change in c.3 weeks be mirrored in this cortisol test, and not what was happening before this?

[TiggerMe Ambassador]

Yep, the SST only shows if your body is capable of responding to ACTH but irritatingly they don't check your ability to create ACTH 🙄 so most of us pass the test as we don't have Addisons but adrenal fatigue which they don't recognise.

So you will get your baseline total cortisol and then how high it goes 30 mins after jab, quite likely if you arrive for 7.40am by the time they have done the admin etc it'll be nearer 9am

Have you got any recent full thyroid results to see where your are after the changes?

Edit... just looked back at your previous post last month and it certainly looks like 17.5mcg T3 gave a better result and still left room to go to 20mcg depending how you felt?

[Judithdalston in reply to TiggerMe]

It’s just a GP blood test, so a single draw. So I doubt I’ll get any further testing . I’m only at 3 weeks into Gp’s change of levo.down to 75 so not done blood test, but getting whole load of ‘hypo’ symptoms. I had previously done my own expt. re TSH upping T3 to 17.5, and by removing one of my T3 doses from 5mcg x3 to 5 x2 and 100 levo:

22/7/24

TSH 0.02

FT4 19.2 (72%)

FT3 4.2 (30%).

Bit surprised that FT4 was so much higher !

Tho old 17.5 T3/ 100 levo dose gave:

1/5/24

TSH 0.01

FT4 18 (60%)

FT3 5.5 (65%)

So better balance of Frees but even less TSH! The endo prescribed 3x5 T3 plus 100 levo gave TSH of 0.018; FT4 52%; FT3 40%. 19/9/23.

Obviously I am trying to establish whether Long Covid has damaged something that is creating the high HR/BP that I never had pre covid despite 2+ decades of hypothyroidism, but various drs.jump to the conclusion ‘it’s overmedicated levothyroxin’!

[TiggerMe Ambassador in reply to Judithdalston]

How did you feel on the slightly higher T3? Did it make any difference to HR and BP?

[Judithdalston in reply to TiggerMe]

The Long Covid seems to have produced so many symptoms ( eg high Bp/HR, breathlessness, lack of smell, greater fatigue etc etc) that’s is difficult to tell whether higher T3 made me feel better, similarly difficult to tell with BP/HR even though I record them regularly daily ( along with symptoms) as although I might think ‘I feel a bit better today’, next day/week or on standing a bit too long ( 8 mins at tilt table test) I realise I’m not!

[TiggerMe Ambassador in reply to Judithdalston]

I know what you mean, it often comes down to what you manage to do before stopping rather than actually feeling well that is the small tell tale sign of an improvement

What effect has it had on your vits, mins and iron levels?

[Judithdalston in reply to TiggerMe]

I had hypothyroidism and fibromyalgia before Long Covid so had already, partially learnt, not to over do things if I started to feel better, else weeks of feeling worse. 4 1/2 + years of LC tends to make you forgot what you were like before, plus we have ageing ontop… I take lots of vits/ mins, trying to maintain the ‘big 4’ at optimal, and despite daily/ weekly dosing I am surprised on c8,000iu of liquid vit D, with K, daily still results blood test of only 78; but iron , problematic for years to get above mid 50s is at 66 with heme. Last folate failed as sample stuck in Exeter sorting office for 24 hours, but normally 15-18; B12 usually 100-115. Lots of others supplements eg Mg, selenium, Thiamin, other Bs, alpha lipoic acid, augmented NAC, vit A etc all consumed…a mix of thyroid and LC support or ‘cures’.

[humanbean]

I would avoid everything except water between getting up and having your blood sample taken.

You can catch up on any medicines and supplements you've missed after the blood draw.

[Judithdalston in reply to humanbean]

I’ll be half asleep at that time as Long Covid has whacked me don’t normally stir to after 10 ( except for thyroid pills taken c 6 am)….

[greygoose]

So surely a 7.40 am test would only confirm the lowish morning levels if still like this, not mismatch at other times?

Yes. That's the whole point of it. The early morning reading is the most important. It's supposed to be quite high in range to get you up and started on your day.

And, if your early morning cortisol is low, it's not surprising when the other readings are over-range. The adrenals have a certain quota of cortisol to make in the morning, and if they don't manage it in the morning, they keep trying until they do. So, that means that the other readings are going to be high. And very often they don't manage it until late at night, meaning that your late night cortisol is high, when it should be low, and stops you sleeping. So, the trick is to raise your morning cortisol, and the rest will fall into place.

[Judithdalston in reply to greygoose]

Magic!

[RedOne1]

I had morning cortisol test with nhs endo which came back, in their words, very good. This just meant that it wasn't low enough to consider Addison's I believe. I think that's below 400? Mine was 450. I later had a 4 point saliva adrenal stress test privately which showed established phase 3 HPA axis dysfunction. I have been prescribed hydrocortisone due to very low cortisol level throughout the day. My fatigue has improved greatly! Might be worth considering a private test again if possible if results are low, but not low enough for Addison's.

I just had water before my test, I think it was at 9am. Hope you get some answers ☺️

[Judithdalston in reply to RedOne1]

Taken 4 1/2 years for Gp to consider this to rule it out as in short list of things that cause ‘postural hypotension’…it’s very disabilitating and would be nice to solve rather than tinkering with thyroid hormones and making those symptoms worse!

[McPammy]

I get a 9am cortisol test every 3 months now for past 5 years after having abnormally low results, under range. For myself introducing T3 helped that magically. It’s always in range now usually 250-300 at 9am (155-650). That’s normal. You don’t need it any higher really. As it goes higher when you are sick or stressed automatically. So you don’t want it up high on a daily routine. I also had three synacthen tests which all came back excellent. So no Addison’s. I’d suggest you get your TSH in range and therefore your t4 and t3 in range after taking your meds for a blood test. You don’t want them going over the levels. Aim for a healthy persons TSH of 1-2. A healthy person doesn’t have over or under ranges. I’m now symptom free following this advise.

[Judithdalston in reply to McPammy]

The only time I have proof of TSH in 1-2 range (1.20) was within first 6 months or so of being diagnosed nearly 30 years ago on 150 levo.but FT3 3% in range : felt so rotten was signed off work ( art teaching) for months and forced to retire from it. In between then and now learnt to improve vits/ mins but just ran out of energy most days till 2018 when added T3 and not surprisingTSH always well under TSH range! Except for short period of T3 monotherapy I have never had any Frees over 80%, so hardly ‘over medicated’. Long Covid has just added a layer ( a very thick one) where everything just isn’t working properly, I’m trying very very slowly trying to unpick what might be involved…Gp taken 4 1/2 years to consider adrenals.

[McPammy in reply to Judithdalston]

I found my sweet spot to be t4 low and t3 high in ranges. My TSH is currently 1.09 ( 0.35-5.50). My t3 is usually 5.6 (3.7-6.0) that’s after taking meds prior to blood draw. I do blood draws with or without to check how high and how low it gets. I take liquid levo and t3 Thybon Henning. I always split my doses also throughout the day. I’m never suppressed thankfully. I was first diagnosed in 2007 but it took until 2019 to get proper help when I went private. Now I feel great and symptom free. My Endo says that’s down to keeping TSH just in range.

[Judithdalston in reply to McPammy]

I wish…too many chronic ailments : diabetes ( type 3c after septic shock/ acute pancreatitis post ‘routine procedure’ to unblock bile duct went wrong), fibromyalgia, hypothyroidism and Long Covid to find a ‘sweet spot’!