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Adreanal Insufficiency No More

VHLDNA
0 Recommendations

I had my bilateral adrenalectomy in 1986 and have been on hydrocortisone ever since. My current endocrinologist who I have been seeing for about one year has been concerned with the low dose I take. He questioned my need for the hydrocotisone since my labs are so good. So yesterday I took a High Dose Cortrosyn Stimulation Test. Well this morning I got a phone call stating that my test was NORMAL and instructing me to discontinue the hydrocortisone. I will have more blood work in 10 days to make sure everything is still normal. I'm still in disbelief and wondering if anyone else has a simular story.

Explore topics in this discussion:

Dehydration Surgery Epilepsy Cortef Stress

19 replies

Deededell

I feel so blessed to have found you. In June 2006, I had an bilateral adreanalectommy due to pheochromocytomas on each side I have been on hydrocortisone as much as 30mg a day and I take .5 mg of Flournef. I have never gotten back on my feet. I am still as week as a kittlen. Can you please share with me what all they have done with you. I cannot stand this feeling of "UGH". Looking forward to your knowledge and thank you.

Blessings,
Deededell

rcscott65

How is this possible if you had both glands removed? Where do they think the adrenaline is coming from that is ample enough to supply your body?

My son is 11 and had his right gland 100% removed and 90% of his left. He is on 15mg per day so far. He does not feel tired or have problems if he isn't right on time. Were you experiencing this as well?

Rhonda Scott

VHLDNA

Sorry I have taken so long to reply I have been busy with work. I haven't been told why or how this is possible. I just know that it is. Like your son I didn't feel tired or have any problems. I have done nothing special to achieve this outcome. It's been about 3 weeks that I have been med free. I feel GREAT. Some of the side affects from the meds are beginning to go away. I will keep everyone informed of any changes in my situation. If you or anyone else has any questions I will be happy to answer them.

djeddah

i am new to this sight and i have been told that i have a cavernous angioma at the t2 of my spine. i have had some people tell me that i probably should be tested for vhl my mothers family have strong history of tumors and epilepsy. I have no idea and my doctor seem frustrated and i feel the same way. I guess i just need to educate my self. and thats is why i am here on this sight. can someone help out.

joyceg98

Sure! Glad to get you started.

Please send your postal address to handbooks@vhl.org and ask for a new member kit of information about VHL. This will get you started.

Information on DNA testing can be found at http://vhl.org/dna

There is also a list of clinical care centers for VHL. If you are near one of those, they can help you through the process of analyzing your medical situation and your family history and starting the testing process, both clinically (looking for symptoms) and through DNA.

Best wishes,
Joyce

djeddah

thank you joyce i will visit these sights and i will keep you informed.

thanks again,

Sean Perry

Porq

Wow this is amazing. My son doesn't have any side effects from his drugs but was wondering what you experience. He is on a very low dose of hydrocortisone and florinef as well. He has more energy now than before and seems to be a changed person.

TinaDiane

After a bilateraladrenalectomy, folks NEED replacement cortisone and florinef. I am unsure why
VHLDNA was able to go off her meds. I suspect she has some functional adrenal gland left. People can DIE without these medicines, and can get very sick in a short amount of time without them. I had a bilateral adrenalectomy 22 years ago due to pheos. I have read most everything out there about this. I am happy your son feels so much better. I have feel fine on my replacement dosages. I am on a much smaller dose of cortisone medication now than after my surgery. Modern medicine keeps advancing and now we know we need less than what we thought years ago. BUT WE STILL NEED THE REPLACEMENT MEDICATION.

Best of health to us all,
Tina

MichelleC

There is some thought that the adrenals MAY be able to regenerate IF there was some adrenal left when you had your adrenalectomy. I do not believe there has been any clinical studies on this.
My son had bilateral partial adrenalectomy and lives med. free with approx. 1/8 of each adrenal in tact.

Jacki1

Hi Tina, I'm just curious...I had my second "total" 42 years ago.I also have read everything there was to read. Several years ago my Dr and I experimented w/ my dose of cortisone. I now take 10mg AM, 10mg evening, and 5mg at night. I take .05mg of florinef. How much do you take? I'm curious because it seems like it varies a great deal from person to person! It also seems to change w/age!

Best wishes, Jacki

TinaDiane

Hi Jacki,
I take 10 mg of cortisone in the am and 5 mg in the afternoon. I take 0.1 mg of florinef every other day.

When I am sick, I take more cortisone. 20 years ago, I was on 40 mg of cortisone per day.

I feel alot better on higher doses of cortisone, but I get "Cushinoid" symptoms and appearance on higher doses, and the larger dose for me also began bone loss. I usually take an additional 5 mg every 4 days or so, if I am really dragging.

Always fun to talk to others with no adrenals. Did they remove all of your adrenal glands the first time and go back again?

Best of Health to us all!
Tina

Jacki1

Hi Tina

They took 1 adrenal in 1960, the 2nd in 1967. After "fiddling" w/the dose I left at 12.5 mg 3x daily, and .05 daily of florinef. It wasn't until 3 or 4 years ago that I suggested I take less!! Everyone in this group seemed to be taking far less than I. (Old Doc is long gone) Present Doc fiddled some more, and I'm down to 10mg AM, 10 @ dinner, and 5 @ bedtime. Interesting I've never altered my dose except for surgery. Happily, I'm very rarely sick; I've been told that "no adrenals" makes one very suseptable to EVERYTHING. Stay healthy, Jacki

TinaDiane

I am very rarely sick too. I know the dose of cortisone varies for everyone. Do you take the generic hydrocortisone or Cortef? I have taken the generic for 2 years and it seems ok. Some folks don't like it.

Best of Health
Tina

joyceg98

Tina or Jacki, instead of just dropping the medication, would it be smarter for VHLDNA to taper it down? That way, if problems begin to arise at some lower level, she might catch it before she hits bottom?

Obviously, you should always discuss any change in medication with your doctor, and monitor the effects.

Joyce

joyceg98

FYI, there is a certain amount of adrenaline that is generated by other tissues outside the adrenal glands. It could be that your body has "learned" to generate more to make up for the lack of adrenal glands.

Joyce

VHLDNA

I was already on such a lose dose of hydrocortisone (10mg am and 10 mg pm) this is why my current doctor suspected that my body was producing what it needed. I didn't get to this low dose overnight it took several years, many doctor visits and alot of blood work. I had been under his care for about a year and half at the time of the High Dose Cortrosyn Stimulation Test. I still look for signs of problems and know that at any moment things could change and I could be back on meds, but nothing so far. I've been off all meds for almost a whole year. I feel GREAT!

TinaDiane

I am very happy for you! I am glad you have good MD that does close follow up with you. I just want to warn folks with out any adrenal glands NOT to go off of their meds, it can be deadly and we would get very sick first.
The replacement dose for cortisone is now thought to be 10-20 mg per day, WITHOUT stress. Cortisone is a very important hormone that we can not live without, and it helps our bodies deal with stress and basic bodily functions. This is much less of a dose than what MDs thought 20 years ago. The adrenals also make aldosterone, a substance that helps the kidneys maintain proper fluid balance and blood pressure. Those of us without functional adrenal glands could "bottom out" with out florinef (medication that is a replacement for the aldosterone) and have severe low blood pressure and dehydration to the point of extreme illness and death. The adrenaline that the adrenals make is gone forever with the bilateraladrenalectomy, but the sympathetic nervous system makes a small amount of an adrenaline type substance, but not enough to make you jump!! People without adrenals that are steroid dependant (on daily cortisone) should wear a medical alert that states "no adrenal glands, needs steroids". If we are in a serious car accident, we would need iv cortisone replacement plus the stress dose.

Bottom line, be followed closely by a KNOWLEDGEABLE MD, and learn as much as you can!!

Best of health to us all,
Tina

sabrinakay

Usually anyone who has had a bilateral adrenalectomy cannot survive without hydrocortisone and fludrocortisone. I have heard of a few rare cases where the adrenal glands have regenerated to the point where these steroids are no longer required. I have been praying for that to happen to me but it hasn't so far.

sabrinakay

Also, the rule of thumb that I have received is that one day without steroid replacement will cause you to feel poorly and two days without steroid replacement will result in a crisis and ultimately death if a stress dose is not administered.

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