Cortisol

[MummySS22]

Hi everybody! I’m new here frantically searching for advice! So I hope someone can help me. I’ve been reading the version of Mumsnet in google where you can just read threads and I felt I needed to become part of this community!

bit of backstory- I’ve been feeling like utter crap ever since the birth of my son last June. Extreme tiredness, muscle aches, bone aches, diziness, heart palpitations and extreme anxiety amoungst others. I’ve been begging the doctors for months to help me and they just say it’s anxiety but I know it not! (I’ve suffered health anxiety for 11 years as well OCD) I feel like they know this so just fob me off. Anyways, I’ve managed to get some bloods done. All the usual ones are normal.
I had a morning blood test at the hospital this morning for cortisol which was 200. I haven’t spoke to the doctor only read the results on the online portal thingy, which say “ borderline, if symptoms are suggestive of adrenal insuffiency and then some other test is advises” can’t remember what is called.
sooo anyhow, me being a raging hypochondriac gets straight on google and it says Addisons. Adrenal crisis. Can be fatal. Now I’m going out of my mind to waiting to suddenly die.

can anyone help? Offer advice? Opinions? Should I be worried or will I live to see another day?

I await patiently and appreciatingly (is that a word?)

If it is a tumour on the adrenal glands it’s fairly easy to treat - they will remove the tumour and the adrenal gland. Often this does mean swinging into adrenal insufficiency, sometimes this is a temporary thing until the remaining adrenal gland - if left untouched if there is only one tumour - “wakes” up and realises it needs to produce extra cortisol to compensate.

If you come over to the Facebook group there are lots of members with experience of cushings and we have one member who actually runs an equivalent Cushings group and you can ask to join this.

📸 Look at this post on Facebook https://www.facebook.com/share/wQMoKEAmVRGNggs3/?mibextid=K35XfP

Not sure if that link will work I’ll try again .-

📸 Look at this post on Facebook https://www.facebook.com/share/gm5MhY615wySN5qg/?mibextid=K35XfP

@Pigeonqueen thank you. The link is not working for me. Could I have the name of the group so that I may look it up

Of course - screenshot here -

@Pigeonqueen thank you.

after tests last week. The endocrinologist has brought my daughter’s appointment forward. I am now reading too much into that and worried sick

Have you had your calcium levels checked?

I think I have as iv and lots of other tests Including FBC, electrolytes which were normal. Bine profile which was abnormal but no follow up so they can't be that concerned. I've now been refferred Endocrinology

@MummySS22 if bone profile is abnormal then that sounds like your calcium levels are abnormal. High blood calcium causes all of the symptoms you are describing and if you also have an issue with your cortisol, can indicate something called MEN1.

can you get a copy of your blood results?

if your calcium is high, you need to have it re tested in the same blood draw as PTH and vitamin D. Likelihood is PTH will also be high, in that case it’s an illness called primary hyperPARAthyroidism which is easily cured, but if you do have MEN1 (genetic) there’s more to it. For now is stick with the fact you potentially have primary hyperPARAthyroidism and pursue that potential diagnosis. Endocrinologist will be the same person to deal with that if so. Feel free to PM me.

I've just gone back over all my results and my calcium is normal so I can't understand it why the bone profile says abnormal.

Can you share the figures for me please?

I've added a screenshot

Hmm weird it was flagged then. Calcium could still be the issue (there’s something called normocalcaemic phpt) which is where your calcium level is normal but you still have primary hyperPARAthyroidism but unless you have that secondary blood test done you won’t know (and it’ll be hard to get a GP to run it without cause).