Very low morning cortisol, can this be something innocent?

Hi everyone,

due to the amazing wealth of knowledge and experience here I am wondering if you could share your views and advice. I will give a short summary of recent situation below-

- low T4 level (9 to 10 across multiple tests) over the past year but a normal TSH (usually about 1)

- GP referred to Endo who did more detailed blood tests to look at possible pituitary issues and I haven't got all of the results back yet but they phoned and said cortisol came back very low at 75 nmol/l, taken around 10.30am. He has now requested more tests including synacthen to look at cortisol in more detail.

-It is really hard to sit with the uncertainty of not having all of the results but the combination of low T4 and normal TSH and now the discovery of low cortisol is leading me to think this has to be a pituitary issue?

[SlowDragon Administrator]

Welcome to the forum

Can you add the range on Ft4 (figures in brackets and each result)

Ranges vary in different labs

Have you also had thyroid antibodies, Ft3 and vitamin levels tested

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Majority of endocrinologists are diabetes specialists

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors

[e-mail]

[Hidden in reply to SlowDragon]

Thanks for your reply. I should have added more detail about the previous thyroid tests. The lab's lower range for T4 is about 11.4 but I don't have the results in front of me. B12 was fine but I still supplement, D was low 18 months ago but I heavily supplemented and now above 70. Thyroid antibodies have been done twice and were normal. Iron stores a bit low so also supplementing. I stopped all supplements before most recent tests that showed low cortisol though.

[Hidden in reply to Hidden]

Sorry and to further add, I'm not on any medication and have no history of steroid use. Symptoms wise the main issues are low energy, weight gain and poor immunity.

[SlowDragon Administrator in reply to Hidden]

Have you had both Thyroid Peroxidase antibodies (TPO) and Thyroglobulin antibodies (TG) tested

NHS only tests TG antibodies if TPO are high (positive for autoimmune thyroid disease)

Significant minority of Hashimoto’s patients only have high TG antibodies so struggle to get diagnosed

20% of Hashimoto's patients never have raised antibodies 

Have you had ultrasound scan of thyroid

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to Hidden]

Vitamins

How low were vitamin D and B12 before supplementing

What are actual B12, folate and ferritin levels now

Vitamin D may be better nearer 100nmol

Approx how old are you …..pre or post menopause

Have you had oestrogen, progesterone or testosterone levels tested

Or prolactin levels

Or an MRI of pituitary

Or 24 hour urine collection for cortisol testing for Addison’s or Cushings

More detailed Cortisol and DHEA test not available on NHS

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

[Hidden]

Thank you. Not menopausal or on medication. There are more thyroid tests that have been done that I don’t have the results of and more tests being done about cortisol this week.

Right now I’m very concerned about the very low cortisol and was wondering if anyone has any experience of a level this low and what this turned out to be? All my googling so far is saying this isn’t a good sign.