Fresh off the DX Block (smirk*)

[jessssssster]

Hey and Hello there all!

My name is Jesse, I live on the Oregon Coast,  and I've FINALLY stumbled across this very happening site. I was dx a couple of months ago with adrenal insufficiency, then hypopituitarism (ACTH deficiency), and then finally a microadenoma on my pituitary gland.  Currently I don't believe I'll go through with the surgery mainly due to a lack of insurance. If the MRI shows further growth this summer, then things may change. I would gratefully appreciate any advice you'd be so gracious to share with me on the topics of meds & ACTH deficiency. It seems that idiopathic (isolated) ACTH deficiency is an uncommon result from hyopituitarism, and thus far I'm feelin a bit...........alone  :/
My hydrocortisone has done very little to alleviate my symptoms and I'm considering a change-over to Prednisone. Any suggestions? My main issue besides fatigue is a persevering brain fog that begins in the morning and makes life oftentimes HELLISH.  My endo is supposed to get back to me next week after consulting with his neuroradiologist friend about a spot of ischemia (blood blockage) in my right hemisphere. I'm 26 and have had only slight head injuries, so I'm thinking, "Whaaaa?"         Thanks for reading and I look forward to talking w/ you all.

Best wishes,

~Jesse~

[SarahB79]

I am just shocked that the dr. I saw at Cleveland Clinic last week kept telling me there was NO way to have adrenal fatigue or insuffiency with normal or low ACTH values. :-P

Good luck! :-)

[rumpled]

Pred has *some* benefits BUT you must think that long term, the damage will be there.
Pred lasts a long time, longer than one day, and it does not allow the body the down time it needs to regenerate the bone and muscle and other things it needs to do. Hence why people on pred end up with bone necrosis and cataracts much more often than those on HC.
Unless you are a super duper active person and are going to *use* all the pred that you are gong to take, I would approach the pred carefully, and instead think about stretching the HC out into 3 or 4 doses. Your future body will thank you. Plus you have to think about when to take it as it takes longer to kick in. Who knew steroids were so complex.
I have no adrenals. I will be on this med long term.
My body was already wrecked by steroids (I had Cushing's disease) and I have no further desire to take even an ounce more than I have to. I live the damage. My prospective therefore differs.
Now I am faced with another disease and the treatment of choice is... prednisone... I have refused. I cannot face Cushing's again.

[jessssssster]

   I feel for your son Enzyme, that's an unfair age to have to deal with such a confusing disease. It's encouraging to hear that he has a supportive and concerned mom behind him. I'm fairly sure that although I did graduate at the top of my class blah blah & etc.. that my parents simply wrote me off as crazy / or thin-skinned and that was that. Kind of a hard decree to swallow when you yourself are young and experiencing a mystery disease, no? (lol) And just to add, althuogh these 7 years have been hellish for me personally, I recognize that they've made me stronger in many ways and I'm sure that your son will come out all the more warrior for it :]

A good friend from my Addison's forum has changed over from HC to Prednisone for four months now. She has reported easier mornings and an absence of brain-fog / fatigue, so I'm considering starting a mild dose....

I'm ordering my last round of blood labs this week and DHEA is among the values I requested. The Vit D was already found as delinquent.  To be frank, I'm extremely thankful that my disease was dx before I fell off the insurance train, but at the same time I am   #$*@**$^&#  pissed off that I'm the motivation behind the tests, scans, dx.... It's obvious to me now that we must be our own advocates and not rely on the pill-pushing corporate puppets we call doctors (sorry, a generalization and obviously not entirely accurate) but It's an abomination in it's own right that so many medical professionals can be so oblivious to lives (that's US) which are often so close to the brink of disaster. (*deep breath*)   Just coming to terms here and I appreciate you all for the open ears and for your support.

peace & sunshine ---->>  Jesse

[rumpled]

You are not alone - you just have not been hanging out with us sickies! I guess 'cause most of us hang alone, in bed...

Has your doc added florinef to your HC? How is your blood pressure - high or low? Are you craving salt? Do you need salt tablets? It helps when you get tired or sweaty, to up the salt as those with adrenal issues do not hold salt. That is why there is problems. Florinef will help hold the salt and balance the potassium.

Also, other things can be off - DHEA, vitamin D, ferratin, etc, so you have to get a lot of other things checked - plus if your cortisol is wrecked up - it effects your thyroid and growth hormone or even the androgens. So if your doc is not fully monitoring you for changes and stability on a regular basis, find another.

[enzymelover]

   You are correct. Isolated ACTH deficiency is uncommon, and makes me wonder if another hormone loss is soon to be a possibility for you. It took months for my son to adjust to hydrocortisone, but he was started on thyroxine simultaneously, and had hormone balance problems, and a lot of nausea (worse than before he started the meds).

I suggest sticking with the hydrocortisone, prednisone will cause problems. How much hydrocortisone are you taking?

My son had (and still has) a lot of vitamin and amino acid deficiencies, and organic acid imbalances, associated with his adrenal hormone loss. Testing for, and correcting these deficiencies may help a lot with your symptoms.

My son is 13, has a macroadenoma\cyst, has not yet had any surgeries.