Replacement cortisol

[Wired123]

Hi all, I’ve been seeing consistently low morning cortisol recently around the 179-225 mark when bottom end of cutoff is 133.

At times I have been around 130-140s.

My Endo is thinking of giving me cortisol tablets to take daily.

Has anyone got experience of this and can share their experiences?

[Hidden]

I'm steroid dependent due to not producing cortisol. Have you had a short synacthen test to confirm that your adrenal glands are not producing enough cortisol? |It seems a bit "strange" to say he's thinking about it, surely he should have confirmation that there is an issue? Sadly many Endo's don't have enough experience of pituitary/adrenal issues so it's important to see one that does. If you are given steroids to treat your insufficiency then it is likely to be for life. Do you know what the cause of your insufficiency is? I'm more than happy to share my experience as I've been on steroids for 5 + years now.

[SlowDragon Administrator]

When were Ft4 and Ft3 last tested

2 months ago....Ft4 was on low side ...and you were thinking of increasing

healthunlocked.com/thyroidu...

Did you increase

Had retest since?

Low cortisol suggests thyroid is under medicated

[Wired123 in reply to SlowDragon]

Retesting next week then seeing endo as have increased the T4 dose.

I’m sure the endo will be going back to the cortisol issue at my next appt and I’ll need to make a decision then.

[Wired123]

Maybe I should clarify, the Endo wants to start a trial but I’m reluctant.

My cortisol has been historically low for over 10 years, I’ve had the SST twice which was borderline.

Morning cortisol is on the low side and SST confirms my body CAN make cortisol when needed but not in massive amounts.

I have a flattened pituitary gland (known as empty sella syndrome) so the pituitary is not quite 100%.

I’m interested in hearing of people’s experience on cortisol replacement.

[Hidden]

As I said further up I am steroid dependent so take Hydrocortisone as I make very little cortisol (my early morning cortisol was 11nmol/Ls) There is a risk that if you start on it then you won't be able to come off in the future as your adrenal glands will stop producing it. You must make your decision on what symptoms you are experiencing & the quality of your life at the moment. I metabolise quickly so need to take my HC 6 times a day,otherwise I have low cortisol symptoms. Many people find that they can take it 3 times a day & are fine, but we all vary. If you go onto HC you will need to carry a steroid card, wear a medical alert bracelet, plus an emergency Hydrocortisone injection kit in case of emergency. If you are on Facebook then join the UK Addison's & AI info & support group. There are many knowledgeable people on there.

[Wired123 in reply to Hidden]

Thanks that’s really useful, will look on the FB group