lowcortisol? /test interpretation/med problems

[faith63]

I hope you all are doing well.  I haven't been on here in quite a while.

I have Hash's and a damaged pituitary. I had gained over 20lbs in a 3 month period and 11lbs of it in 8 days, I guess this is a lot of fluid?  Been like this since 2010. I have had trouble with all thyroid meds causing a hyper feeling and at 120mgs my thyroid labs are still low.  I have recently learned my iron is at the bottom of the range. My AM cortisol was at the bottom of the range. 6.6 [6.7-22.6] AM ACTH 8 [6-58] The PM blood  5.9 [2.3-11.9] and 24 hour urine cortisol were normal.  The range on the urine confuses me..it was 21.3 [under 45]  I don't understand this as a 3 would then be considered normal?  Do these labs look cortisol deficient?  In April 2012, I was put on Pred 5mgs, I got hot/sweating spells palps, high blood pressure etc..started weaning off and could only tolerate 1/4 of a 5mg tablet.  I was switched to 20mgs of HC and started gaining 2.5lbs weekly and became very swollen and again my BP was really high.  Anything over 5mgs. I have bad symptoms.  After 2 months of steroids, I weaned and had horrible withdrawal.  2 weeks ago, I developed a full body, itching, burning rash and was given a dose pak of 4mg. Medrol. The first day, you take 6 tablets [24mgs] and go down by 1 tablet a day.  So these are high doses. By day 2, the swelling I had since 2010, started to leave.  I could see the bones in my hands and my nose was normal and I had a jawline and my joints weren't swollen and the pain was gone. I lost 4lbs in 3 days.  A day after my last dose of 4mgs. the swelling is coming back.
Are my cortisol levels indicative of AI? Does this indicate that I need a steroid, because of the drastic improvement?  Why can't I tolerate HC or Pred?  Maybe they have sodium retain properties that I don't need?  Can a person use Medrol at a smaller dose for AI?  Did this high dose/short time possibly lower my cortisol levels even more?

Any advise would be so appreciated!

Thank you, all

[rumpled]

Corticosteroids are a love/hate thing... the work for the auto-immune suppression to take down the swelling and itching... but the flip side is that on some people it messes more with the body than others.

When you are AI, you lose sodium. The body is trying so hard to hold sodium that it swells - so in a confusing mess - you actually need more fluid. I would read your levels as normal but that morning one is not great (I agree with you on the urine range! my lab gives a bottom). Have you had a stim test? Was your ACTH done properly (chilled tube, spun immediately, frozen promptly?) if not it was low from lab handling.

A lot of people gain on replacements... it bites.

[faith63]

Hey, how are you feeling?  Glad to see you're among the living!

I agree that the levels WERE normal but I'll bet they aren't now!  I got withdrawal symptoms after stopping the Medrol dose pack.  Doc put me on Medrol for replacement, 4mgs.daily.  I will start weaning off I guess.  I don't think low AM cortisol, warrants a full replacement, do you?  My serum sodium is low, in range, and my doc thinks it is because of all the fluid I retain, due to my hypothyroidism, my FT3 is not at upper end of the range yet.  Not sure if he's right or not.  My potassium and mag. were normal, in May.  He has no interest in retesting things.  Aldosterone was an 8.3 [4.0-31.0]  Renin below range.

With the low ACTH serum, low AM cortisol and empty sella, my doc felt it wasn't necessary to do a stim test.  With low cortisol, your ACTH should be high if pituitary is working and adrenals not..but you already know this,  I know.  So, he says it's not necessary.  I tend to agree but, I'm not sure.

As for the tests done correctly, I just know that I was told I had to go to the Hospital's lab because they had to be processed immediately.  I didn't know then what I know now.  ACTH, Aldosterone and Renin were done together.  I had not eaten or drank in 12 ours before the tests because I was told to fast..which wasn't correct, but typical!

Two things that have helped me immensely, was treating my low iron, which was at rock bottom and who knows how long it's been that way..not tested for 10 years possibly!!!  The other is Citicoline, a supplement used for low blood flow to the brain, that was found on a SPECT Scan and common to pituitary issues.  It has helped with brain fog issues.

Thanks.

[rumpled]

How is your sodium and potassium? Those may be off with a renin issue - it may be that you have an adrenal issue centered around not cortsol but renin, or the cortisol is on the verge, and the renin/aldosterone is effected first. The doc should at least keep an eye out. A stim test is THE test so if there is suspicion - which there could be, then that is the test to do. Ah I see your sodium is LOWish - do you crave salt and salt your food?

So, be careful with the wean - medrol is a bear.

Is the doc going to treat the low renin - Are they associating that with the BP issues?

I fast before all my tests. BTW when you replace, you have to replace fully or not at all.

[faith63]

Interesting about renin/aldosterone issue and not as much cortisol issue.  What is ther treatment/symptoms for the low renin?  I don't crave salt and swell worse if I try and supplement it and my BP is only high while on HC or pred.  Renin was below range, aldosterone at the bottom.  The renin was not addressed.  I was told it was normal.  I was told the sodium was low due to a dilutional state from all the swelling I have , maybe due to hypothyroid. Did not know I would need to replace all of my cortisol.  Why, can't you just add some to the low AM reading? Any advise/opinion on this would be so helpful!  Tired of feeling bad..in Medrol withdrawal and haven't slept in 6 nights.

[rumpled]

There is a condition called hypo-adosteronism - but I think that comes with low blood pressure?  Sodium does not get low from that - it gets messed up from the renin/aldosterone or a cortisol issue.

A tiny bit of cortisol is like throwing water into an ocean - sure, it is there, but is does not contribute so much - for most people. What is a suppressive dose can vary. You cannot just add some at one time - adrenals are lazy little things and if they sense that there is an external source of corticosteroid, they simply shut down. Hence why you have to taper or wean. Cortisol is a weird thing.

Withdrawal hurts - and has to be done carefully.