Posted , 6 users are following.
i was diagnosed with AI, due to hypopituitarism, a little over 6 months ago. been taking hydrocortisone 3 times a day, and i got tired of it so i just stopped taking it. I was expecting headaches, tiredness, vomiting even but none of that has happened, i feel wonderful. i dont know how this happened though, i had blood work that confirmed AI. Has this happened to anyone else?
1 like, 20 replies
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Roddy999 seesmith123
Posted
Having no natural cortisol and stopping your hydrocortisone HRT means that you have no means to fight inflamation. Provided nothing happens, you won't notice any difference. For a lot of people, hypopituitarism doesn't have obvious symtoms, just a slow decline over many years - that's why it takes so long to diagnose.
But heaven help you if you have an accident, have a serious illness, whatever because you have no cortisol to fight it. Your blood pressure will flatline, you will slip into a coma and you will die. There is no way that A&E or the ambulance crew will figure out in time what to do.
hanny32508 Roddy999
Posted
Also - would you advise people with this kind of adrenal problem to wear a bracelet?
Roddy999 hanny32508
Posted
Yes, it is essential to wear a bracelet or a dog-tag. If you are in an accident or just keel over, the paramedics need to know to give you emergency hydrocortisone injection asap, not wait until you get to the top of the Q at A&E. You should also carry a steroid card.
IMO, you don't need an expensive MedicAlert, there are a number of sites on the net where you can have them made to order. It should at least have the "snake and staff" symbol, ideally on a six arm "cross" and say "Addison's". I have a dog tag so have room for my name and NHS number plus ICE contact.
Roddy999
Posted
I don't rule out the possibility that your pituitary has recovered - indeed it is not a rare outcome. [See www DOT ncbi DOT nlm DOT nih DOT gov/pmc/articles/PMC2585697/ then Aetiology "At least partial recovery of pituitary function in 40%–65% of patients has been reported after surgery"].
BUT it seems obvious to me that one should make a decision based on a couple of simple blood tests and your endo's years of experience and training, rather than oh, let's see if I survive a minor illness.
Roddy999
Posted
"your" = seesmith's