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Old 04-22-2008, 10:04 AM   #1
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Just Diagnosed with Addison's

Hi there,
I was just diagnosed with Addison's last week. I've been sick for many years.....I was hyperadrenia a year ago, and now I don't have enough cortisol to get me up in the a.m., or enough in the afternoon to keep me above the grass. The doc started me on Cortisol Acetate. It's been a week, and I still feel the same....dreadful!
How long does it take for meds to kick in? I also have Hashimoto's Thyroiditis...and Rheumatoid Arthritis.....life is so much fun!
I look forward to any suggestions :-) Thank you in advance! Chris

 
Old 04-22-2008, 01:04 PM   #2
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Re: Just Diagnosed with Addison's

How much did he give you and just as importantly, how are you taking it (what dose, what times of day?)?

If you have been sick a long time... it may take a while... however, if you are not on the correct dose or taking it correctly, or if you need florinef, additional salt or or meds... then it just may not be all that you need.

With all your other auto-immune issues, I am going to assume the addison's is auto-immune too? I have hashimoto's too and several other auto-immune things as well...

 
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Old 04-22-2008, 01:36 PM   #3
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Re: Just Diagnosed with Addison's

Cortisone acetate has a 1 hour half life. Because of this it's not useful to treat adrenal insufficiency. I've not seen anyone stay on it for very long. Your doc should have started you on hydrocortisone which works for 80% of people with AI. The rest need Medrol.

 
Old 04-22-2008, 02:37 PM   #4
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Re: Just Diagnosed with Addison's

Dito. I am primary adrenal insufficient. Given my other AIs.. they assume it is AI related too and haven't done the confirmation study. The just know my cortisol was not.

I am doing well on 20 mg of hydrocortisone spread out in 4 - 5 mg doses. I take them in about 3-4 hour increments starting a 6 am ending at 5:30 pm.

Cortisol acetate is too weak. You need a different med.

MG
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Old 04-22-2008, 05:19 PM   #5
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Re: Just Diagnosed with Addison's

Thank you so much for your suggestions and sharing what works for you. I am currently taking 10 mg cortisol acetate at 8am and noon. I assume (don't know for sure yet) that the adrenals are being attacked by my body (like everything else!) ....I've had a very hard time with cortisol being way high (a year ago), so I'm wondering if that's why the doc put me on Cortisol acetate instead of something else (?)....Thank you all for giving me points to talk to the doc about. I'm trying to keep my chin up, but it's very hard sometimes. My best to you all.....

 
Old 04-23-2008, 07:01 AM   #6
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Re: Just Diagnosed with Addison's

You're welcome. Cortisol can be high in the early to midstages of adrenal collapse. Most with primary AI do not have Addison's, so most do not have the 21-OH adrenal antibodies.

 
Old 04-23-2008, 08:08 AM   #7
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Re: Just Diagnosed with Addison's

My cortisol was at 5 &#37; in the blood serum and only in normal region at 8 am. After i take my DHEA supplementation. ACTH Stim high.. 70 when normal <35

I am vit D deficient. Now aggressively treating this. Doesn't help the hypoT constipation issues.
I was vit B12, ferritin, and magnesium deficient.. But I have gotten those into the 40% range of normal and holding six months now.

My Hashimoto's antibodies are about 2000.
My CSF is at an elevated pressure and I have oligomeric banding and noted milan destruction.. MRI is clean.. as well as a bunch of other tests.. no MS or lupus.. so Hashimoto's encephalopathy is suspected. Go back in May for another round of testing on that one.

I am having issues with regulating thyroid meds because my T3 levels are/were 2 fold my T4 levels and I keep pushing my self hyperT in T3 while remaining hypoT in T4.

My endo claims I am normal because my TSH was 2 before meds.. all else was irrelevent. Bless her. So I am working with my IM and we are both in new territory. Know any good Endos with in 4 hours of Chattanooga, TN with this mess.

Right now my list is:
Thyroid: TPOAb, TGAb, TBG, TSH 3rd Gen, Ft3, Ft4, T2

Adrenals: ACTH, Cortisol 8 am, Aldosterone, and ACA, renin

Pituitary/hypothalamus: PTH, TRH

General AI: ANA

So anything I am missing? I am giving my blood chemistry a good 3 months to level out and equilibrate. So the Vit D and other mess will wait. Also any advice in getting rid of the water retention in the feet? Just the feet and my right ankle. Ocassionally my knees swell but that normally corresponds to a Hashi's flare and hypoT state. AHHHH! Okay better now. Crud.. I think I am working up to a hyperT swing again. This really sucks.

MG
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Old 04-23-2008, 10:08 AM   #8
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Re: Just Diagnosed with Addison's

Perhaps your doctor meant to give you hydrocortisone instead as the acetate form is used, well, hardly ever if ever. Most take HC or pred with HC prefered as it closer to what the body makes itself. At least you are dividing your doses.
I would call your doctor and get a proper medication.

 
Old 04-23-2008, 02:50 PM   #9
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Re: Just Diagnosed with Addison's

Thanks so much for all of this information! You all sound like physicians! I obviously have a lot of learning to do One thing for sure...I have learned to be my own advocate through this journey..... as I have an extensive history of weird health and surgeries....and doctors who say I am an enigma!
My doc is out this whole week, so I will hopefully connect with him first thing Monday to talk about my meds. I do have a question regarding meds...what would be the most natural form of cortisol to take? I know this must be a totally dopus question....but you're dealing with a novice here. My doc tries to use the most natrual form of anything, so I wonder if that is why he put me on cortisol acetate.
I take armour thyroid (2 grains). My tsh level was 7 (yikes! now it's 2)...I also was put into forced menopause after my last surgery (5/07), so I take bioidentical hormones, thankfully i've responded well to them. I take Vit. d 5,000iu a day which helps with my RA pain (I can't tolerate any meds for the RA), and I receive b-12 shots each week. I take a host of other supplements as well. One thing that the docs mentioned to me was the emotional trauma that they believed contributed to my adrenals going bye bye.....Last year I lost my beloved brother (age 52) suddenly, I went to the Mayo Clinic 3 times in MN, had surgery on the last trip (long story, I had PCOS), and then my daughter cancelled her wedding 18 days before the wedding day (Thankfully!), and then my mom became very ill. I was by her side 14-16 hours a day for 3 months....the docs think that the stress of everything burned my adrenals out or that it's an autoimmunce thing....I assure you..... I'm a "normal person" you all must be thinking "who is the heck is this????"
Also, one more question.....i've been having periodic weird cold sweats with a feeling of weakness,.....I have hypoglycema so it could be a blood sugar thing, but i've been hypoglycemic a long time, and never had cold sweats....anyone else ever feel like this?
I thank you for your time in reading this epistle! I Look forward to learning from you all. Thank you!
Chris

 
Old 04-23-2008, 03:58 PM   #10
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Re: Just Diagnosed with Addison's

I see two natural sources. One is OTC:

Pregnenolone:
From an endocrine functional definition glossery:
Pregnenolone is a natural hormone made from cholesterol in the body. Pregnenolone is an intermediate in the synthesis of all steroid hormones. It is synthesized inside the mitochondria, the tiny "power plants" found in each cell. Pregnenolone is synthesized from cholesterol and is a precursor for the biosynthesis of steroid hormones. Pregnenolone is the basic precursor for the
production of all the human steroid hormones, including DHEA, progesterone, estrogen, testosterone, cortisone, cortisol and aldosterone.

Hydrocortisone:
Basic anatomy and function of cortisol:
Cortisol is a natural steroid hormone produced by the adrenal glands (located on top of the kidneys) The adrenal glands release cortisol in response to a stressful situation. The cortisol gives energy and helps the body respond to the stress efficiently.
Cortisol is an essential hormone for life but too much or chronically elevated cortisol levels eventually degrade the immune system. We are insufficient which can be equally bad.. or T3 levels are allowed to over burn. But we have a fix Cortisol is available synthetically and goes by the names of cortisone, prednisone, hydrocortisone, or dexasmethasone. Hydrocortisone is 1/4 to 1/5 the strength of prednisone.. and it is closest to what our body would make if it could.. thus it is the preferred supplement.

Cold sweats and weakness? Humm sounds like it is hormonal and thyroid to me. What were your last Fts? When were you tested for estrogen and all the female hormones? Might be worth donating more blood.

Not an MD I am a chemist/chemical engineer. Go ahead.. say it.. GEEK!
MG
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Old 04-23-2008, 04:43 PM   #11
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Re: Just Diagnosed with Addison's

Thanks MG! You're hilarious!
Chris

 
Old 04-27-2008, 06:27 PM   #12
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Re: Just Diagnosed with Addison's

Hi Chris,
Welcome to Addison's Disease. I was diagnosed 10 years ago and would like to share some basics:
You should feel the benefits of the cortisol supplementation right away. It's a pretty fast acting drug and the dose we get as Addison's patients is a metabolic amount, meaning it should replace/mimic the amount a healthy adrenal gland would produce. That being said, maybe your dose isn't strong enough for your metabolic needs? Or maybe you need to spread your dose throughout the day- some in the morning when natural cortisol levels should be at their highest, and some in the afternoon to get you through the rest of the day- ask your MD what they recommend. Or perhaps you need to ask your endo to consider adding the mineralocortocoid drug Florinef to your treatment plan. Florinef will help better regulate your sodium/potassium levels which can ease the fatigue, elevate low blood pressure, etc. Don't know how this would interact with your thyroid condition & meds, but it's worth asking.

Most importantly is to educate yourself, especially for emergency situations. Illness & bodily stress strains the adrenal patient differently, we have to factor in and manage Addison's in tandem with every sinus infection, fever, broken bone, etc. Addison's is a very rare condition. Many doctors see it only a few times in a medical career and you will often need to fill them in on your special needs, remind them that you need stress dose steroids. Always disclose your Addison's diagnosis in every medical situation, to your dentist before any procedures, etc.

And if you aren't already for your other conditions, register with Medic Alert and wear your bracelet! Hope this helps!

 
Old 04-28-2008, 06:25 AM   #13
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Re: Just Diagnosed with Addison's

Hi Lesley,
Thank you for your nice post....nice to meet you! Some of your suggestions to me have been given to me over the years, and some just over the weekend by some friends...
7 Years ago, long before I was diagnosed, the doctors (many that I saw to get help and got nowhere) said that I had Neurally Mediated Postural Hypotension. My BP would drop 30-50 points when standing. NOBODY could tell me WHY it was dropping. All they would do is try to treat the symptoms... I went from doctor to doctor, each one trying to fix me..... Some had me taking Florinef, wearing compression stockings, increasing my salt intake, and taking beta blockers. Nothing helped me. I still have all of the same symptoms. When I stand up, or sit for long periods of time my legs and feet turn purple, I'm always dizzy or "half a bubble off center" and just feel wiped out everyday...after seeing a host of doctors I starting believing that I was losing my mind! I ended up seing a cardiologist for 2.5 years, and he had me on beta blockers, which made me feel worse....*sigh*....I've suffered and struggled with it all for years to no avail....Many of them were close to figuring things out....but they didn't think they needed to test me for addisons....."it's so rare!" ARGH!!!!! Also, EVERYONE says "you look so great!" It has been a nightmare!
So, taking Florinef with Cortisol would be better? To be honest, I am so freaked out taking any meds because I've been on so many through the years, and none have helped me. So my faith in them is pretty low. Is there a specific test that would indicate that Florinef is needed?
Also, getting a medic alert bracelet is something a friend suggested to me on Saturday. So I will get one for sure.
My doc is SUPPOSED to be back in the office on Thursday so hopefully I'll be able to get in to see him.
Here is another dopus question....what is the difference between adrenal insufficiency and addisons? Or are they the same?
Thanks again for your help!
Chris

 
Old 04-28-2008, 09:06 AM   #14
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Re: Just Diagnosed with Addison's

From the definition of Addison's it is primary adrenal insufficiency an adrenal gland that has approximately 90&#37; disfunction in the adrenal cortex. 70% of Addisonian's are autoimmune attack inspired and 50% have or will develope polyendocrine deficiency syndrome.

Hey, I meet the criteria for autoimmune polyendocrine deficiency syndrome. Ahh I am a rare oddity. Hashimoto's, Graves Disease, hypothyroid with periods of hyperthyroid, primary adrenal insufficiency, what is next? Don't you just love surprises! Now being a rarity, does that make me a collector's item or reject? Gotta laugh at excrement when it hits the fan... it makes such a wide spread splatter pattern... *Salutes sharply* Here's to trying and stay behind the fan!

MG
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Old 04-29-2008, 02:38 PM   #15
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Re: Just Diagnosed with Addison's

MG, thank you.
My gosh! Are you having fun yet??? Is THIS the fun part?? Well, I know one thing fer sure man, you HAVE to keep your sense of humor through all of this....I'm with you, it's better to behind the fan than in front of it ;-)
It seems to me (through reading posts) that there are many common threads that run through everyone with this disease....in addition to Addisons some have thryroid disease, hypoglycemia, PCOS, and other fun stuff....*sigh*......I'm sick of being sick! Will see the doc on Thursday to discuss my meds not working....until later, thanks again.
Chris

 
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