Rubber Stamp by Endo

[ShannonD]

Well, I have now been seen by the endocrinologist (beyond my primary doc), and been told I have Addison's.  I guess I already know that. Despite not having an ACTH stim test, he felt very sure that I had Addison's.  I wrote a comprehensive history of my symptoms and treatement thus far.  He said that the salty saliva, and salt crystals visible on my skin was common (as well as the hyperpigmentation, low serum sodium)

 He encouraged me to take my medications in a more regular fashion.  Thus far I had been taking very small portions of hydrocortisone all day long.  He said it would be better to take larger doses 2 x daily, to mimic the natural diurnal peaks and valleys.  He said that if I take low dose all the time that I have increased risk of osteoporosis.  First I had heard that.

He also told me that replacing testosterone might increase risk of osteoporosis.....which seems counterintuitive....I am going to have to see about this.  I feel so much better, and it is nice to have some libido back. I am only replacing a physiologic dose.

I forgot to ask him before I left his office about injectable hydrocortisone, and medical alert bracelet/necklace.  What do you all recommend?  What does your alert bracelet say?  So far, I am pretty aware of when hydrocortisone gets low, and I know that I need to take more....not too many problems with nausea....because I know at the onset of the nausea, that I have to take more hydrocortisone.  Can't imagine injecting myself with 100mg of hydrocortisone....but I am probably still in denial.

The doctor I saw was Dr. Mervyn Lifschitz in Denver.  Bit of an old fashioned office.  Classic white haired doc.  Graduated med school in 1975 in South Africa, prior to getting boarded here.  I think he is a decent choice for addison's in the denver area.  He definitely pays attention to history and physical exam, and did not make me feel 2 inches tall for not having an ACTH stim test.  He is probably a bit old fashioned as far as "med management".  (ie no testosterone).  Tough for me to say yet if that is a good thing or a bad thing.  

Generally feeling better than I did earlier this summer!!  Dusty, I have a write up of my story, but I would like you to read it first before mainstreaming it online. It likely needs some editing, and it is long right now.

Take care all.  Thank you for your help.
ShannonD

[Idaho Dusty]

Shannon,

Welcome to the club!  It's good to know what beast you are fighting so you can do it efficiently.

I think your doc is off his rocker about osteo and testo.  As far as men go:  "Maintaining testosterone concentrations in the normal range has been shown to contribute to bone health, lean muscle mass, and physical and sexual function, suggesting that testosterone replacement therapy may help to prevent frailty in older men." (to access this link, you need a FREE medscape.com membership-well worth the 2 minutes it will take to sign up).

For the shot, I've got 250 mg of solucortef and a 21 G needle.  I like having the 250 because I spend a lot of time in the backcountry and far away from hospitals so it gives me more to work with than the traditional 100 mg of solucortef.

My bracelet says, "Adrenal Insufficiency Needs stress dose of hydrocortisone"  I got it from medicalert.com

Additionally, if you can, get a script for Zofran.  It's a life saver when you get nausea.  It could keep you out of the er and keep you from having to give yourself a shot!

Shannon, my mom sees Rees-Jones for her thyroid and LOVES him.  He's pretty progressive.  I don't know about his experience with Addisonian's though.  I'd be hesitant to not have all the hormones replaced that my body's supposed to have.

Did he test your DHEA-S?

I'm looking forward to your story whenever you are ready to give it.  Feel free to change names if that makes you more comfortable!

How are you feeling now?

:) Dusty

[ShannonD]

thanks,

I am taking quite a bit more hydrocortisone now.  I am still on florinef .05mg daily, and now I take hydrocortisone 5mg in am (I was on 2.5) then I am repeating about 4 to 5 at 11am and then 2.5, 2.5.  I feel much better. THe doc I say was saying that if I take smaller doses during the day,....don't match the diurnal rhythyms, that I am at greater chances of osteoporosis.  Right now, anyway, I would prefer doing 5mg, 2.5, 2.5, 2.5, 2.5....only because somedays, like today, I did 5 then 2.5, 2.5, 5....and the second 5mg really overloaded me.  weird. Like we have all said....easier when nature does it for you.  Except in the am....I feel liek the larger doese are going to over do it and then I feel weird in the opposite way.

Any comments....do you really think that if I take 5mg then 2.5s, that I will get osteo.

I tend to agree with you on the testosterone.  I actually can feel the central weakness (kyphosis) kick in with the glucocorticoids, but the testosterone really gives me strength and keeps my posture straighter.  

My doc is willing to prescribe the testosterone...so either way will work, but I might see Rees-Jones.  I think he is on Dr. Friedman's web site.  I would also like to just talk to someone else.  

THank goodness for your web site.  My diagnosis took less time than most, and all I know is that I was profoundly miserable for long enough......every day....feeling miserable, is awful. I feel normal now, pretty much.

If I were to post my story, would I simply post it here?
ShannonD

[ShannonD]

By the way, regarding the DHEA-S, the serum was normal.  The salivary was actually high. Don't remember if you remember me telling you that I had acne and hair growth problems (but very LOW testosterone)

On one web site (a naturopath on east coast, who had a retreat, who has now passed on).....he listed 7 stages of adrenal fatigue - to insufficiency.  The 7th stage was low DHEA, low cortisol.  The 6th stage was high DHEA, low or even normal cortisol.  On the metametrix web site, it also notes this pattern, and simply notes that it is uncommon but does denote a stage of adrenal fatigue failure.  

In some previous posts, I mentioned that I would have these "attacks" (situations of stress) where I felt like I was making the wrong hormone.  I would get oily, and salty....I was waxing my eyebrows weekly (almost;) At first when I was taking hydrocortisone, I was having a hard time to tell if the acne was from the HC (despite really low dose 5-7.5mg daily) versus......was I actually making the "wrong" hormone.  I am now quite convinced that I was making excessive DHEA, and too little cortisol, and almost no aldosterone.  If it were not thought to be impossibe, I would think that I had late onset CAH of the 3 beta hydroxysteroid dehydrogenase deficiency. (Because in children....it is considered: salt wasting, low aldosterone, somewhat low cortisol....and low progesterone and testosterone). But supposedly there is no such thing as late onset.  Either way.... probably does not make a difference, because the treatment is the same (florinef, HC).

I still wonder....if I got it in stage 6 of 7.....is there hope for weaning someday?  I think that may be the denial side of me, that did not want to take the meds in the first place.

Shannon

Shannon

[Idaho Dusty]

Hey Shannon,

Cute picture!  Beautiful baby!!!  Fun to be able to put a face with name.

Interesting with the DHEA, we're "supposed to" convert DHEA to testo.  You are an obvious example that it doesn't necessarily happen.  When I supplemented DHEA, my testo was nearly nil.  Do you get angry and irritated easily?  When only supplementing DHEA (and my thyroid was off), I was mean as hell.

How are you feeling today?  Do you work outside of the home?

I used to be really against meds in all forms.  I suffered from migraines for 20 years without ANY meds, including antinausea or pain meds, had my son at home with midwives, saw accupuncturists, massage therapists, chiropractors, etc for exhaustion and persistent nausea.  Now that I feel well with meds, I can't imagine giving them up and possibly backsliding.  I guess I've changed my mindset and created acceptance to the drugs I have to take despite years of "hippie" thinking.  If you do get to feeling better than you ever have with the meds, perhaps you will become OK with them too?  Perhaps you will get stronger and be able to get off of them?  Anything can happen!

:) Dusty

[ShannonD]

Dusty,
Thanks for the compliment....on baby Quincy.  I am so happy that I have enough energy to enjoy her now.

I was reading on (alot) of different web sites about the varying stages of adrenal exhaustion --->insufficiency.
Somewhere between 6 to 7 th stage of process becoming hirsute and having temporarily high DHEA can be part of the process.  Body trying to sqeeze out last of its juice but machinery has failed to make adequate cortisol and alsosterone.  I will need get DHEA rechecked down the road to see where I am at.

There is a Doc in UK, Dr. Durrant peatfield (actually got his license pulled by the council for prescribing armor thyroid for subclinical hypothyroidism - because the grey haired endos didn't agree with him UGH!!) Anyhow, he says that some folks can wean off HC after anywhere from 8 weeks to 6 month to a year.....but that if you are symptomatic weaning off,,,,that you musn't.  Interesting.  I am not per se holding my breath, because as you mentioned, I feel so good now that I suspect I will always need at least a little HC, if not all the time during stress.  BTW, he (and thyroid-UK) doing some interesting stuff on fibromyalgia and thyroid, as Dr. Friedman is doing a study on chronic fatigue and adrenals.

My testosterone was really low when it was checked.  Do you think that 1mg daily is enough replacement?

Good question if I work...I am on your web site so much.  I am a little obsessive right now having been newly diagnosed.  I work 1/2 to 3/4 time (about 25to 35 hours per week) pretty high paced at work, but down time is good (but with crawling baby....running marathons in the house).  THank goodness I was able to get diagnosed fairly quickly....thank you.  Or I would not be functional.

Your attitude is infectious!! Now that I feel better....I just want to enjoy my life...but part of that comes from watching you be so involved in your life.  As I was getting diagnosed, I was so self centered.....partly because my body would not let me think of anything else.

take care,
Shannon

[Idaho Dusty]

Shannon,

I take 2 mg/day replacement.  Ashley said Dr. F told her to take half in the am and half in the pm so that's how I'm doing it.

Thanks so much for the complements, I really appreciate it.  It's my passion to help people get diagnosed with something if they are sick.  So many doctors don't care and we have to empower ourselves and be our own advocates!

Thanks for sharing your experience and information.  Together we can help others better than individually.

:) Dusty