The endo should also be testing renin and aldosterone - and you may have to take florinef.
I take salt tabs to keep my BP up, and florinef, and salt my food like crazy. You also need to know if your K spikes or drops so you know to avoid or add K.
If you crave it, you need it most times. Mmmm salt.
The stim test was a big fail, alrhough your however i am not surprised. Id be willing to bet she did a baseline acth, if she didnt you need another endo. The steroids could be what are throwing you off, they can cause the pituotary to not do its job properly. It already sees that you have cortisol, so it doesnt produce acth to signal the adrenals to produce cortisol.
It can take the hpa axis a while to get back to homeostasis, but it wont do so while you are on the steroids, unfortunately it sounds like you meed them right now with the other isssues.
You would need to be off steroids for at least a month to het a more accurate indication of what is going on adrenal wise.
My guess is that any cortisol issues you may have would be steroid induced.
Haha...do I salt my food....this is an understatement. I have a craving for salted butter....I eat flour tortillas with a thick layer of salted butter multiple times a day, this is my snack of choice, will put salted butter on EVERYTHING including PB&J sandwiches, ritz crackers, cookies, cinnamon rolls, pastries, doughnuts, all veggies, I add salted butter to my soups, quesadillas, etc. and I crave diet coke which has a large amount of Sodium. Everyone else thinks its quite disgusting but my body craves it.
I see the endo on Wednesday to discuss my results, I will let you know what she says and if I end up switching to a different endo!
I would find another endo pronto...
Calcium should never be abnormal - they should check your parathyroids. Read up on that. You likely have a small parathyroid tumor.
With low BP, you may need florinef to hold sodium. That will resolve the low sodium and keep the BP up - they put me on beta blockers too but it was too much. Between the calcium and sodium issues - that can really mess with the heart. Do you salt your food?
I asked about your skin as primary (adrenal) typically have a tan as the pituitary is still working and trying hard to signal the adrenals but secondary (pituitary) is where no skin changes happen and ACTH is low, the adrenals are not signaled. It is tan, not red though.But as ACTH is often botched by the lab (it degrades in minutes once drawn so it needs to be a chilled tube, spun immediately, frozen promptly), accurate readings are very hard to get.
I take salt tablets, unbuffered, to keep my BP up. Typical is to spike in K you need to see your tests to know if you need to avoid K when you are sick or if you need to have extra. I am not typical - I need it so I have tomato juice, salted.
TSH is 0.5, so it is low normal (normal range 0.35-5.0), T4 was normal at 109 and Free T3 was 5.0 (normal below 4.0, I can't remember the low range number)...total T3 was 189 (normal high value is 153). Sodium and potassium are fine right now, but over the past 2 years have had low sodium twice, potassium has been ok. Calcium has been elevated sporadically, they tested PTH and it was at the high end of normal so they just kept an eye on the Calcium and it went down on its own. Blood pressure has been low...86/50 at my last rheum visit (a month ago) and 98/64 at my last primary care visit a week and a half ago. I'm on a beta blocker anyway for my pacemaker/heart rate but its a low dose. I do have orthostatic dizziness/lightheadedness frequently and for some reason when I am somewhere with bright lights....like every time I walk into Rite Aid their lights are bright and I get dizzy and usually have to sit down at the pharmacy waiting area until it passes...so odd. Thank you so much for your input, I see my endo on Wed and I do plan on talking to her about her experience with adrenal issues and make sure I shouldn't be seeing someone more specialized. I have been through so much with my symptoms over the past few years I am done seeing docs who don't have a clue. As far as skin changes...its hard to say...I am a redhead with lots of freckles, but my skin is always bright red underneath my freckles and I don't know why. But even in the sun...a tan for me is redness like a burn but it just doesn't hurt! :)
As a layman, I would find that stim test to be a failure.
I would also get the doc to test other hormones - you may be hypopit or panhypopit? What was your TSH?
With the failed test, I would go to a pituitary center and get under the care of a neuro-endo. Odd are better (sadly not 100%) that you will get a more competent doctor that will test you more completely instead of piecemeal. You don't know if you are primary or secondary (any tan?) and with the heart issues, a complex case should warrant a doctor that can take that on. But you should also read up so you know if your doc is doing a good job or if you have to switch. Always get copies.
How is your sodium and potassium? That will give you an idea of how your renin and aldosterone readings will come in.
There are some links in the health pages, so read up in there as well as older posts to learn more. Feel free to ask more questions as well!
I should also add I am a 31yo female, I also have a pacemaker due to 2 cardiac ablations of my sinus node for tachycardia, this was placed in April 2010. The other symptom I forgot to mention is extreme hair loss, I'm losing it in handfuls. I was originally referred to endo 3 weeks ago for the elevated T3, but since the TSH and T4 are normal she ordered the cortisol...that is how I ended up having the ACTH stim test yesterday. Thanks :)