Reassurance on recent saliva cortisol results ? - Thyroid UK

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Reassurance on recent saliva cortisol results ?

Sallybones
Sallybones
β€’9 Replies

Hy all have no one else to bounce thoughts off and have posted before and still digging for answers to the root of my ongoing 'fading away'!

Previous thoughts re thyroid results were possible central hypothyroidism so maybe I'm on the right track?

Had this private saliva cortisol test in June and gave a copy to my GP who referred me on again to what is my 3rd endocrinologist. None of them did a cortisol test.

From previous experience with health persons, I have no great expectations but they are going to do Synacthen stimulation test and early morning serum cortisol test, for which I have to attend the day ward in mid August. So just getting by day by day and sleeping a lot.

waking <1.5 (6.0 - 21.00)

12.00 3.10 (1.5 - 7.60)

14.00 6.05 (0.00 - 5.49)

16.00 2.12 (0.00 - 5.49)

18.00 <1.5 (0.00 - 4.49)

Bedtime <1.5 (0.00 - 1.99)

Should I be very concerned about these results or do I need to do another saliva test to confirm this one wasn't a false result?

Another lady at the clinic was told to do a 24 urine test for the same thing.

Any thoughts would be really helpful as beginning to think all is pointless thanks SallyB

9 Replies
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Having a Pituitary issue - ie Central Hypothyroidism - could also affect the adrenals. Has this been ruled out yet ?. Just read your thread of a year ago and before 😊

Sallybones
Sallybones
in reply to Marz

Hya Marz thanks for replying and taking time to read my previous posts.

Bear with me as I get bit befuddled.

The first endo I saw was so rude I refused to see her again and saw a different one at the same hospital, which is a couple of years ago now. Neither one considered anything but the Osteoporosis diagnosis I already had and was happy to put me on medication for that and as usual suggested a course of antidepressants. (My GP would happily have agreed to the Osteo medication but I declined all). No cortisol test was done by that endo and thyroid results were considered normal in her eyes. So that was that.

Not one to give up yet:-

Early on this year I was given the name of another Endo at a different hospital who supposedly was a very good all round consultant including Pituitary problems. I now ask for a copy of my GPs referral letters before appointments but this man again only concentrated on the Osteoporosis as apparently I'd been put in the Bone Clinic and that's all he could deal with!! Basic blood tests were done inc thyroid but no FT3 and no cortisol. In future I won't allow students to sit in on appointments because he was showing off to the young man and he was dismissive of me. His verdict on Osteo treatment was that the medication would do more harm than good!! Well that's fine by me and the only good thing about that appointment. Oh he gave me a leaflet on healthy eating after I told him I have Slow Gut Motility (Redundant Colon) & struggle to eat!

So with a bit of money available I paid for a saliva cortisol test and only now am I being investigated regarding adrenals, I presume. They still consider my thyroid to be 'normal' though it's still borderline low.

In fairness my GP referred me on again but only because I paid for the test and have abnormal results. So this is actually my 4th Endo and it was an inexperienced registrar with language difficulties I saw, because the consultant had been called away. The clinic was running very late, it was very hot and I struggled to think on the spot. She had no notes about me and it's my local hospital where I've attended many times.

I've since put together a letter with a history which paints a clearer picture of my life and sent it to the consultant. I had to do this for DWP tribunals so updated the info.

I've a Echocardiogram coming up too in August. I've been diagnosed with a kind of heart block (not meant to be serious). It just seems as if my body is failing bit by bit and nobody is bothered and now I'm getting really scared.

So I suppose I've just got to wait for these tests to be done and at least they are going to be done but yet another year is going by.

I have spoken to a very helpful lady at the Pituitary Foundation who spurred me on to get investigated but I suppose I want it doing yesterday!

According to my results I shouldn't have the ability to even get out of bed in the morning, which I do just manage, but at 2pm I should be running round, but which is when I fall asleep for about 2 hours.

I think I just wanted someone to know how I am at the moment and my friends / family think I get by ok.

Sorry for the ramble and thanks for your time SallyB xx

Marz
Marz
in reply to Sallybones

For the sake of others reading this thread - can you post your latest thyroid results with ranges. Sounds as if your FT3 is LOW 😊

Sallybones
Sallybones
in reply to Marz

Hi yes will post them later this evening xx

Marz
Marz
in reply to Sallybones

😴😴

Sallybones
Sallybones
in reply to Marz

Here we go

April 2018 st james nhs

TSH 0.71 (0.20 - 4.0)

FT4 11.00 (10 - 20)

FT3 not done

June 2018 Private Test early morning fasting

TSH 1.19 (0.27 - 4.20)

FT4 12.9 (12 - 22)

FT3 4.22 (3.10 - 6.80)

Iron 21.82 (6.60 - 26.00)

TIBC 56.62 (41.00 - 77.00)

Transferrin Saturation 38.54 (20.00 - 55.00)

Ferritin 50.2 (13.00 - 150.00)

Vit D 106 (50.00 - 200) taking supplements

Folate Serum 9.06 (2.91 - 50.00)

Active B12 300 (25.10 - 165.00) self injecting

Marz
Marz
in reply to Sallybones

I suggest you make a new post asking for comments on results. Heading - Could these results indicate a Pituitary issue ? Post both results and link your other posts if possible. Bedtime here in Crete - will look in the morning 😴😴

Sallybones
Sallybones
in reply to Marz

ok thanks Marz will do tomorrow. Sleep well xx

Sallybones
Sallybones
in reply to Marz

Hi Marz I don't have the energy at the moment to do another post. I'll wait and see what happens with the tests they do in August and then come back with either positive news or disappointment or frustration yet again. Hoping to move forward if nothing else.

Thank you so much. I did feel a bit better for just writing my post and you reading it.

BFN SallyB xx

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