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I had one adrenal gland removed April 2009 and the other removed May 2009. I take hydrocortisone and Florinef, and, with bit of common sense, have no problems, issues at all.

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Duane37 do you do better with them gone and the meds or when you still had them and you were using the meds ? Thanks for your reply :)

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Duane 37 , Thank you for your reply ,I have had one removed ,the other seems to have been asleep for a while no tests been done even though i continued to tell doctors something was still wrong ,i did not lose all the weight after surgery for Cushings this happens to more then 100,000. i under went a gastric banding which failed then had a sleeve also seems to have failed but other signs of Cushings on my body but no one was taking any notice of me ,A new Doctor saw me last week & informs me my remaining gland is more then lightly asleep as my Cortisol is dangerously low so i have been put on steroids .how has your weight been with both glands removed as this is my biggest problem along side diabetes .....thank you for taking the time to answer my question ,Rita

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Hi Rita, I haven't really experienced any weight gain as the result of having no adrenals and taking the hydrocortisone. I dropped some pounds prior to the surgeries, and then regained them back over the next year. Been stable weight-wise for the last three. What worked for me was realizing that the fatigue feeling during the day was fixed by eating something salty and drinking more water. It avoided taking too much steroid, which can pack on the excess weight.

Hello Amalyn, I wasn't on steroids prior to the operations, so I can't comment on your question. However, my surgeon calls me every year to ask how I am doing. The past two times I told her that if she has another patient who is hesitating about having the surgery, tell them to call me, I'll tell then not to fret about it. Managing being adrenal-less is much easier than a lot of other conditions.

I have no diabetes of other autoimmune condition, just pure Addison's.

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My life with adrenal tumors was HELL. 1999 had the first one removed, then symptoms of tumor returned. The next 3 years was HELL, if HELL could be any worse. My doctors used me as a Guinea pig and had me on so many meds to control the roller coaster and side effects of meds.... I ended up with a nervous breakdown in 2001. Those horrible meds had taken me up to nearly 300 pounds. By 2003 moved out of that area and weaned myself off all meds. By 2009, finally found a doctor who listened to me and diagnosed me with a Pheo. After the second surgery, I spent 6 months getting used to steriods and LOST 35 pounds. Dieting got me down to 220. . Now I just go up and down with the same 15 pounds.
Having been through a total of 20 years of hyper adrenals, I would rather be on steroids than all those other pills to try to control the symptoms.

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dear duane 37 thank you for you answer it has helped in a small way but like so many i have so meny other things going on as well as i had a brain tumor & ovarian tumors as well as tumor on adrenal gland ,cushings , diabetes ,heart trouble ,arthrites ,just falling apart but would not lay down , weight will not move no matter what i do & now informed remaining gland maybe asleep ,i wish i could rip it out as dr `s have looked at me like i have been laying down stuffing my face its been driving me crazy ... but well done to you & thank you once again ...rita 53

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Dear Rita,
I had my adrenal glands removed in (wait for it)1969, and with Cortisone Acetate tablets and Florinef lived a normal life (lost 3.1/2
stones in weight) until January 2012. All of a sudden I was told I had got to change to Hydrocortisone and there was no alternative.
because they couldn't prescribe acetate any more. The last year has been hell. I have had all the side effect of Hydrocortisone
tablets. I am sure it is cost because Cortisone Acetate are on the Internet to buy. If I knew which Company was safe to buy them from I would buy them.

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Dear Patricia-1,
This is a bit speculative on my part. What the Acetate group does on the Cortisone molecule is to slow down the uptake by the body. It is faster than prednisone, but much slower than straight hydrocortisone. I'll have to check, but I think the Acetate has to go through the liver, while the Hydro is direct to the blood stream.

Another thing that slows down uptake by the body of steroid, or any other medicine, is food. Basically, give the body more to process and it dilutes the strength of the medicine at any point in time during the process. Same total amount delivered, but over an hour rather than 15 minutes. The food would have to be something substantial with respect to digestion, a piece of toast not likely to do it. A couple of eggs, big bowl of oatmeal, a couple of scones, something like that should be enough. And, take the hydrocortisone pills after the food, not during.

The chance of this helping is probably 50/50, but not a big commitment to try.

Also, I don't know the situation in the UK, but could you pay the extra cost out of pocket and get the acetate? It is a shame to do well on a med for 45 years and than have the bean-counters pull the rug from under you.

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Thank you for your interesting comments. I would like to buy them but am worried about the supplier. Do you know of a reliable supplier?

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