Newly adrenal insufficient and have some management questions

[Sickoftheroids]

So I am newly diagnosed with adrenal insufficiency. It has been a struggle trying to figure out the appropriate dosages of Cortef to take and when to take more. For example I usually take 15mg in the AM and 10mg in the afternoon. I want to start being more active and exercising but I feel like my body hates me if I do anything physically taxing. My dr said to take some extra before exercise or when I get sick but how much extra is the question?

I have all the normal symptoms of low cortisol, the extreme fatigue, muscle and joint pain, dizziness upon standing. Taking the hydrocortisone does seem to help for the most part except I am also losing my hair. My hair has been thinning for a few months since my diagnosis and I was wondering if anyone else has hair loss problems? My other issue is zero sex drive which is really frustrating. I was wondering if anyone else had these issues and if they resolved after being on cortef for a few months?

[ggreg]

Hi Rumpled.  Thanks for replying again to my last post here.  But my latest post is with my original post, it has my name under the title, "Can AI cause depression?" or something like that.  You see, I saw the endo people again in early December, and they found my cortisol (adrenal) was still very low, and I talk about what happened.  I was wondering what your feedback might be on it?  Thank you for anything you can offer.  Gail

[rumpled]

ACK! Sorry it all got lost...

The half life of hydro is pretty short so after a few days it would be out. It is about 6 hours for half life, then fully out who knows... people vary.

Fludrocortisone is an aldosterone replacement and would cause a lot of symptoms. My doc tapers you up and down as it is a powerful little pill and there is the florinef fluffs (weight gain) that can happen with it.  30mg HC is more than I am taking and I don't have adrenals. I took 20mg often 15mg. If you don't need it, you may have too much and then may get steroid induced Cushing's.

It is all very complex. I know some of my friends - even my tumor twin - had weird plummeting potassium - but never could figure out the cause. I drop in a crisis which is the opposite of normal.

[ggreg]

Rumpled, the results of my endo doc visit is at my original post, about a half-dozen posts below this one.

[ggreg]

Thanks, Rumpled, for all the interesting information!  As I said in someone else's post where I hijacked it when I was reading your info, I DID stop the 5mg of hydrocortisone on Thursday, and it's been at least a week or more since I have been taking my potassium, and so three full days later of stopping the hydro, Sunday morning, I feel FINE.  

I think even tho hydro stays in the bloodstream awhile, three days is probably enough to prove to me that I don't need that medication, that something else was amiss the day I saw them last spring other than a TRUE adrenal problem.  My understanding is adrenals can get low under stress, which I had at that time, and so now, feeling no stress, my test should come back normal.  If not, I'll ask them how come it shows as low when I have no symptoms!  Perhaps something else is at work here, I have no earthly idea.  They should, though.

I did tell my primary doc about another endocrinology group in town, but he insisted I go back to the same people as before, which I suppose makes sense.  But as long as I feel no symptoms, which I didn't have any symptoms until I took the hydrocortisone, then I think (1) they gave me too much to begin with, the full 30mg hydro and some fludro, and so I had wired-type symptoms, and (2) after being on those drugs a few months, then the side effects took its toll, making me super depressed, which caused me to finally ease off those drugs, until now I am taking nothing and feeling fine.

I'll let you know what happens, at my original post, after I see the endo doc this coming week.  GG

[rumpled]

I hope the endo is helpful.

Sodium and potassium work in tandem and usually one goes off with the other. Since AI is a salt wasting disease, usually one has low BP or fast pulse or some off sodium or potassium (usually high, I am low) with the cortisol issue and there are some exceptions (like my low K) but there has to be an issue.

The adrenal puts out a lot of hormones - maybe more than is known. So I just replace cortisol, fludrocortsone and DHEA for my removal but all of us with bilateral removals never feel 100% right (but way way better than we did with Cushing's, which was also killing us).

It is complex, and most endo's do thyroid and diabetes so it may take doc shopping.

[ggreg]

Hey Rumpled.  I do not know what tests they did for me at the endo place, but I'll of course find out when I see them next week.  However, I CAN tell you that I do not think the test was Renin/Aldosterone because my blood pressure is perfectly normal, as is my heartrate/pulse.  

I have carefully considered stopping the hydrocortisone completely the week before I see the endocrine docs, so they will have a real level to test of my adrenals/cortisol.  That would be tomorrow to stop, and I probably will, mainly to prove to myself that I don't need it... I can always go back on the bit I am taking if I feel any symptoms... which I did not feel at all when I went over to the endo place last spring.

I do have some fludrocortisone, but I stopped it altogether when I began to drop the dosage of the hydro.  Since I am doing so well, and since the fludro would have a similar action on my depression as the hydro, no way will I take it solo.  But I'll take some time to look up the side effects... the thing about that drug is it doesn't stay in the bloodstream very long.  

I think I will also stop my potassium altogether... I haven't taken it in about two weeks anyway.  Once again, this will help the endos get a more accurate test, however they do it.  I will get a copy of my blood/labwork from last time AND this time, and I will inquire as to what test was used before and now.  I will also ask them what made them think I had an adrenal problem to begin with.

You have actually helped me not fear so much my endo appointment end of next week.  See, they wouldn't work with me when I first had a problem, so I really didn't want to see them in the first place, but my primary insisted.  Anyway, I understand all this much better, I feel more in control, and actually, should I stop the hydro for a week, even tho it does stay in the bloodstream a pretty good while, and should I feel exactly the same, then irregardless of what they tell me, I'll just keep right on going the way I always have, with my basic medications before all this happened.

Thanks, Rumpled, you are very knowledgeable.  I'll let you know at my original post what happened at my doc appointment, probably that weekend.  GG

[rumpled]

How were you diagnosed - was it with a sim test? Adrenal antibodies? ACTH? Renin/Aldosterone and sodium, potassium testing?

5mg once a day is not a dose that... replaces. 30mg is a replacement dose. So if you are getting along on 5mg, it would seem that maybe you don't need it - are you sure the issue is cortisol and NOT a renin/aldosterone issue?

Fludrocortisone may be the better replacement for you? I know in some it causes K to drop, but I drop K and take it with Na and hold both. So it can work both ways.

[ggreg]

Hi Rumpled.  Thank you for your comment above.  Sorry I haven't come back in so long.  But I have a question for you.  You probably know a little about my situation, where they diagnosed me with adrenal insufficiency (which I disagree with) and taking hydrocortisone made me so depressed that I dropped the dosage somewhat gradually from 30mg to 5mg.  Now, I also take a once-a-week general vitamin, and becuz back in Feb they found my potassium was flat, I still take one of those each week also.  I am wondering, it's been so long, perhaps I shouldn't be taking it... I use plenty of salt.  Well, I WILL be seeing my endo end of next week, so I'll ask them about it then.  Just wondered what you thought.  GG

[rumpled]

I don't know if the HC causes it to be honest. I think if anything it is the overall disease. I would only take potassium if prescribed. Usually, sodium and potassium work together so if you balance sodium, potassium is fine. I drop sodium and potassium too (normal is to drop sodium and spike potassium).

AI can be caused by different things - like pituitary tumor, auto-immune adrenal disease, or removal of the adrenals - that I know.

[ggreg]

I posted a q earlier, but reading what you said to this q has got me to thinking.  When I was hospitalized last winter, they found my potasiium was flat.  I now take a daily vit and potsssium (2x wk).  Now, my main question was can Hydrocortisone cause depression?  Thank you.  Also, what can cause AI?

[rumpled]

If you are exercising you are losing sodium... AI at its heart is a salt wasting disease so if you start downing a lot of water, well... you can wash away even more sodium. You are better off with a gatorade type drink and to sodium-load before and during you exercise. You also need to be aware of what is going on, and work up and experiment with what works for you - like short times, how much salt, how much extra cortef - it is not just cortef but SALT SALT SALT.

Are you on florinef? Are you primary or secondary? Do you take DHEA? How are your other hormones? Do you get copies? How is your sodium and potassium? That will tell you if you need to up sodium and avoid potassium or if you need both.

What time in the afternoon do you take the 10mg? I take dex now (suppressing my dang tumor) but when I took HC, I took 5mg at 2pm. Any later and you may not sleep well. So that you have to see as well.

It can mess with hair, bones, muscles etc.