hypothalmus pituitary axis dysregulation

[foxglove2020]

hi im a newbie.. just diagnosed with the above and very low DHEA following saliva test. Struggling to find much information online and waiting for follow up with consultant. symptoms are considerable fatigue, insomnia, weight gain and muscle weakness. has anyone had this diagnosis? looking forward to hearing from you thanks.

[Hidden]

Hi What tests have you had done to get this diagnosis? Have a look at the Pituitary Foundation website pituitary.org.uk. From the symptoms you are describing sound as though you could have Cushing's disease which is when there may be a benign pituitary tumour secreting too much ACTH, which in turn stimulates the adrenal glands to secrete too much cortisol. Happy to help more if I can as I've had Cushing's disease.

[foxglove2020 in reply to Hidden]

Pauline, so sorry in delay. I hadn't been on here in a while and just seeing now. Thanks so much for replying...I'm attending a hormone doc and much of my hormones are v low.. e.g. pregnenolone, progesterone and dhea. I've started on meds to supplement these and sleep has improved dramatically but weakness numbness and poor balance remains. I've posted on thrypid community to look at thryoid panel. Thanks again

[lady_eve]

Hi, foxglove2020,

My diagnosis is secondary (central) hypothyroidism and DHEA deficiency, due to pituitary dysfunction.

I take levothyroxine and DHEA supplements, both on prescription. Be aware that DHEA is listed as a controlled drug in this country (UK) and should only be used with a valid prescription. I have been very fortunate in finding a private endo who is happy to write me an annual prescription for the DHEA. My levothyroxine is prescribed on the NHS.

Have you had thyroid function tests? If hypothyroidism is present (and your symptoms do tally with that) then TSH is irrelevant. You need to have free T4 and free T3 tested. Some doctors will look at the TSH, which will be suppressed, and tell you that you cannot possibly have an underactive thyroid gland. But TSH is produced by the pituitary, and if it's low then that's what results in the secondary (central) hypothyroidism.

An alternative to PaulineS's suggestion of Cushing's due to over-production of ACTH is under-production. Have you had any adrenal function blood tests? My baseline cortisol is borderline low (always low on saliva testing, but not low enough to justify treatment by any doctor I've met, yet) but my low DHEA saliva tests have been consistently replicated by blood test, hence the prescription for replacement.

Good luck with your future follow-up. Do let us know how you get on.

[foxglove2020 in reply to lady_eve]

I'm really sorry... I've only logged on now and saw this. Thank you for replying... I've since started on DHEA via a menopause doc.. my adrenal test showed normal cortisol. I've posted a query on the thryoid community to see if my bloods indicate anything. Again sorry for delay in replying