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?
Well, you've given me hope that it might happen to me!
Glad you're feeling so well.
I eas wondering how you were diagnosed. What tests? Also, what dose of hydrocortisone were you taking? Thank you. Janelle
i was diagnosed by an endrocrinologist with cortisol blood test, you know that you take and they test your blood every 15 or 30 so mins( i dont remember exactly) And i was taking 25 mg a day of hydrocortisone.
Were you taking 25mg 3× a day or 25mg total each day? Just curious because I had the same stimulation test and my dr put me on 5mg Prednisone a day in the morning but had major side effects to it....caused IBS. Want to try hydrocortisone but my doc won't listen to me. Thank you for your response. I appreciate it! Also, i am curious if you could tell me about some of your simptoms you experienced? Thx Again, Janelle
i take 25 total a day. I was on prednisone before, but i hated it as well and HC worked a lot better. Before i was diagnosed i was experiencing: awful headaches, weight loss, tired all the times, couldnt sleep at night, i was throwing up all the time, my joints hurt, my heart was racing and i was dizzy.
i take 25 total a day. I was on prednisone before, but i hated it as well and HC worked a lot better. Before i was diagnosed i was experiencing: awful headaches, weight loss, tired all the times, couldnt sleep at night, i was throwing up all the time, my joints hurt, my heart was racing and i was dizzy.
Sounds like me. So, now your completely off any meds and doing well? Wow. What do you think helped you the most to your amazing recovery? Janelle
yep, i am 100% off medication. I honestly am not sure what helped me recover, i dont eat processed sugar anymore so that might of helped, but besides that i didnt really do anything specific besides pray a whole lot. I really think it might be a miracle.
That's wonderful! What a blessing! Very happy for you. Thanks for all your help.my thoughts and prayers are with you!
thank you, mine are with you as well.
Cutting out sugar is often helpful with many illnesses. But also - adrenals are able to recover somehow. As long as your thyroid is still in tact and functioning well.
really? i have never heard of anyone else recovering from insufficiency/addisons.
I thought we were talking about adrenal - insufficiency. Not necessarily addisons. I'm on Cortef to sort of kick start my adrenals in the morning and in the early afternoon. Nothing for the evening. I sleep well and am actually rested in the morning.
For many years I suffered the effect of a treatment for the thyroid. Would I have know at the time that the adrenals need to work in balance with the thyroid I would have never gone for this radio active treatment, that ruined a good part of my life. The adrenals could no longer function properly and now that I'm helped by taking Cortef I haven't felt better. I can concentrate better, hear better, drive my car better, I have an improved memory, and can move about without having the feeling that part of my body is left behind.
Would my thyroid have been left alone and would the medical world have checked the working of the adrenals at the time ... I keep wondering about that. In those days, some 30 years ago, there was just a quick diagnoses and I trusted that the docs knew what they were doing.
I think this A1 sounds like secondary adrenal Insufficiency and not Primary Addisons as I read this below
Clinical manifestations of hypopituitarism depend on the type and severity of hormone deficiency. The consequences of adrenal insufficiency (AI) range from smoldering and nonspecific findings (e.g. fatigue, lethargy, indistinct gastrointestinal symptoms, eosinophilia, fever) to full-fledged crisis (e.g. AMS, severe electrolyte abnormalities, hemodynamic compromise, shock). The presentation of central AI (i.e., arising from hypothalamic or pituitary pathology) is often more subtle than primary AI. In central AI, only glucocorticoid (GC) function is disrupted, leaving the renin-angiotensin-aldosterone system and mineralocorticoid (MC) function intact. This is in stark contrast to primary AI resulting from direct adrenal gland injury, which nearly always disrupts both GC and MC function, leading to more profound circulatory collapse and electrolyte disturbance
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.
Seesmith has hypopituitarism so in all probability his/her thyrroid and adrenals are perfectly ok. The problem arises if they are not getting any instructions [TSH and ACTH respectively] to produce thyroxin or cortisol as needed. So unless he/she really has had a spontaeous recovery of pituitary function (which only blood tests will show), it is a very large accident waiting to happen,
Roddy999 formerly ruadhraigh52147
You understand the problem better than I do. It took indeed years to discover that I was in need of cortisol. What a better life I gained. My blood pressure till then had always been very low and is normal now.
Also - would you advise people with this kind of adrenal problem to wear a bracelet?
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.
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.