What is the correct dosage of hydrocortisone after failing an acth test?

[Yennn]

Im just back from my endo apt.. it wasn’t the doctor I originally saw or spoke to on the phone who prescribed me with 10mg HC. The doc I saw today and also an additional doctor came in to the apt as They both stated they did not think I needed HC as my second test I just missed it by 7nmol.

They said if it were them they wouldn’t even of put me on HC in the first place.

I was reading out information from stop the thyroid madness stating that 10mg was too low a dose. Dosage needs to be split between 4 hours higher in the morning then tapered to lower also showed them my self down temp checks.

I done two ACTH test. Both test done at 9am

First result

Was cortisol 251 range (240-600)

Doc said was normal

After test Cortisol was 395 <430

Failed to rise

ACTH 4 <20 normal

Second test done week prior

Baseline 377 (240-600)

After test 423 <430

ACTH 6 normal

The doctors reasoning for not upping my dosage is that my body doesn’t need it due to morning cortisol being within range.

And upping the dosage to 25mg or 30mg

And putting a patient on a steroid such as HC is a long term drug which has damaging effects such as osteoperosis. She even stated that in ten years time I could have a host of problems and she doesn’t want to be held accountable. I was in this consultation with two doctors for 1 hour 50 mins.

Their advice is 10mg HC first thing in morning.

🤯🙈

I am dealing with chronic neurological Lyme and mercury poisioning too.

My head feels as if it about to burst as I hate just had a back and forth heated discussion with those doctors.

I also asked them to check for PCOS

they said all results where normal even tho I have read you need certain hormones checked at a particular time of cycle.

🤯 everything with nhs seems to be an on going battling.

I finally felt since I got the phone call I had abnormal results back and when initially speaking over the phone to the first doc he said to come in and will discuss dosage and if needed increasing it😬 shame that doc has now moved to another hospital.

[Hidden]

The reference range for cortisol they gave you is for the whole day 240-600, cortisol varies throughout the day, it should be at it's highest first thing in the morning, so ideally it should be around 500 first thing in the morning. Although your base levels is not ever so low it is still low, however you didn't stim well, it should have risen by more than 200nmol/Ls. Your ACTH result is on the lower end of normal which would point to a pituitary issues (I think!)

Which hospital did you go to? Sadly many Endo's don't have a lot of experience of pituitary/adrenal issues, you may need to find one that does - the Pituitary foundation will help with that if you contact them.

Giving 10mgs HC just once a day is not very much & does show that they don't understand pituitary/adrenal issues. Hydrocortisone only lasts in the body for between 4-6 hours so you are hardly getting any benefit from it. Most of us on HC take it at least 3 times a day or more frequently. Its hard to say what the correct dose for you is as we all vary.

I think you should be asking for a second opinion, it's your right, but make sure it is an Endo who is conversant in adrenal/pituitary issues. if you are on Facebook then join the UK Addisons info & support group as there are some knowledgeable people in the group. I'm happy to try & help as well. Pauline

[Yennn in reply to Hidden]

Wow Pauline! Thank you thank you for all your amazing info!

Can I ask so I can arm myself with information how you knew morning cortisol should be at 500 ?

As they told me baseline normal 🤯

I went to stob hill hosp.

I first seen a dr B when was lovely but my follow up apt was with another doctor and an additional doctor came in.

To agree that he felt I didn’t need HC at all.

Thanks for trying to help me with dosage

When you say it all varys.. what is it that makes the variability as after my horrendous apt I am on my own to find my dose that I will find benifiets from.

I am on that group thank you ☺️

I’m sooo happy for your help!

Your info has been one of the best Iv read! I feel like all this health problems is like cracking the divinci code it really shouldn’t be this hard. Thank G for people like you 💓

[MULLIONAIRE in reply to Yennn]

Hi, if you look at this protocol pathology.leedsth.nhs.uk/dn.... You will find details of the levels endocrinologists should consider. Plus if you have symptoms that could indicate a pituitary problem the test is not always accurate. Agree, the Pituitary Foundation is a good place to seek advice. Good luck, diagnosis and even treatment when diagnosed is a minefield.

[Hidden in reply to Yennn]

This is from the UK Addisons website:

9am cortisol

The diagnosis is highly likely if 9am cortisol is less than

100nmol/L. If the patient is already on oral or inhaled steroids,

this may indicated steroid suppression.

The diagnosis is unlikely if cortisol is greater than 400 nmol/L -

but not excluded if the patient is acutely unwell at the time.

For values between 100 and 400 nmol/L the diagnosis can

only be excluded by a short Synacthen test (ACTH stimulation

test)

Patients in the early stages of disease may have 9am cortisol

values towards the top of this range.

REFERRAL TO A SECONDARY SPECIALIST

Refer to a specialist endocrine unit for a Synacthen (ACT

stimulation) test wherever there is a real suspicion of adrenal

insufficiency. If the patient is hypotensive and vomiting, or where

the 9am cortisol is less than 100 nmol/L, an immediate and

urgent referral is required.

This is from the CAHISUS website: cahisus.co.uk/pdf/CIRCADIAN... If you read through the leaflet it shows a chart of normal cortisol levels in a healthy person.

Hope that helps? Pauline