Hypothyroidism and fluctuating low cortisol. What to look for privately?

[StillEverHopeful]

Can anyone direct me where to seek help for the low cortisol fluctuations I am experiencing?

It seems I’m on my own trying to sort out low cortisol that isn’t severe enough on blood test to be worth the NHS exploring further.

Due to increasing fatigue when my “usual” thyroid & cofactors lab results remained stable I explored a 4 point saliva test in July which indicated stage 3 HPA axis disfunction, August 9am blood cortisol was below range with note that adrenal insufficiency could not be ruled out & to consider further tests. GP said cortisol is detectable so not going to follow up with further tests. Husband persuaded her to seek further advice. End of august got message to say I was to have SST had to wait until last week for SST (10days after sudden death of close family member for whom I’m executor).

I have not received results of SST yet so presume they think everything is ok… but I am still very fatigued & have hyperpigmentation on my lower arms.

I’ve been reading Sarah Myhill’s book on chronic fatigue & she suggests a selection of things including hydrocortisone cream, Prenegolone and adrenal cortex (adrenavive) does anyone have any experience of taking this route?

or perhaps can direct me to a self help group or what to look for in private help I’ve seen there is a thyroid doctor at Country Health (?) Ipswich direction, but not sure if they would be able help with the adrenal aspect

Currently not eating dairy or grains and restricting refined sugars (apart from one or two blips which then leave me achy the next day)

Thank you. xx

[Jazzw]

Gosh, you really are going through it aren’t you? I just read your update to humanbean on your last post:

I had my SST a week ago and so far no results. I am assuming that if things were bad they would have contacted me already. So it’s now how to self manage my inconsistent/fluctuating low cortisol.. I’ll write a new post asking for recommendations on who to see privately I had my mother die unexpectedly ten days before the appointment & guess the stress of it pushed me into ‘normal’ My brain is mush at the moment as I try to navigate grief & managing my mums funeral & “estate” (no siblings) I will be trying to get appointments with gp but they only accept online contact between 7-8am (can’t cope with phoning or walking in to ask for appointment) and I am not expecting any help to be forth coming.

I think it’s possible your cortisol was artificially raised as a result of all that—but equally, I wouldn’t bank on that being the reason they haven’t contacted you. Once upon a time maybe… These days, it’s more likely it’s a note on a locum GP’s desk which he/she hasn’t acted on!

If it was me, I’d ring the surgery and ask the receptionist if the results are in. Did they do ACTH as well?

Sending a big hug for everything you’re going through right now. I’m so sorry. xx

[StillEverHopeful in reply to Jazzw]

My understanding is that it is the hospital endocrinologist who will review & report on the results which could take 3 weeks. Couldn’t get them to do ACTH test.

I’ve got online access to gp results & they usually appear as results in but you can’t view until GP has checked them and nothing is appearing in test results.

I was planning on filling in the online form for an appointment (open 7-8am) asking for an in person appointment but the website says that has not been available from 17/10 due to staff shortage. To phone our surgery can you can be in a queue for up to an hour to find they cannot tell you anything. I was planning to ask for an in person appointment to review a mild skin problem and hopefully ask more about the SST at the appointment.

Seeing as one gp said that because my cortisol was detectable it didn’t matter that it was below range and no further testing was needed I really do not have much confidence in getting the help I need.