Living with no adrenal glands

I had the honour of having both my adrenal glands removed last
December. I got over the op very well, or thought I did.


What exhaustion! It's like walking in to a brick wall at about 3pm,
and there's nothing I can seem to do about it - any suggestions would
be gratefully appreciated. After 3pm I could grump for England.


I am on .1mg fludrocortisone and I have tried various combinations of
hydrocortisone between 20mg and 40mg. Currently 10mg at 7am, 10mg at
1pm and 5mg at 5pm. The Endo seems quite happy for me to find my own
level and spacing, as long as I don't go above 30mg long term.


My other area of ignorance relates to what is called an 'adrenal
crisis'. How do I know if I am having one, or better still - how do I
know if one is on it's way?


Richard.
cross-posted JWG

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8 replies. Join the discussion

When I was first facing pheo surgery and the possible prospect of having both my adrenal glands removed, I researched this a bit. This is probably the best info I found on Adrenal Crisis, it has sypmtoms, treatment and personal experiences that can help you understand what the warning signs are that you need to head for the hospital.

http://www.cushings-help.com/911.htm

I would follow some of the advice on here also. Get a Medial Alert Bracelet or Necklace. Also have written instructions that can easily be found by family, friends or medical personnel with specific instructions on how to treat an adrenal crisis, this should be written by your doctor. There is an example of a doctors letter and instuctions in this section of the site.

There should be other members here on the VHL newsgroup that can help you out with figuring out how to self medicate, as I know we have several members that have lost both adrenal glands.

Donna B.
cross-posted JWG

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Hi Richard

I have been without adrenal glands for over 20 years (since I was 13 years
old). You are right about the exhaustion. I can't give you any advice on
how to avoid the exhaustion because I can't seem to do that myself. I just
try to make time to have a nap around 3 pm. Even 30 minutes helps, although
I have been known to sleep for two or three hours in the afternoon (that
happens maybe once a month ... more often if I'm under a lot of stress). I
make sure I get 8 hrs at night, any less and I cannot function in the
afternoon. Don't be hard on yourself. You need to get more rest.

I don't take any Florinef. As for cortisone, I take Cortone, I am on 25 mg
in the morning and 12.5 in the evening. I used to take 15 mg and 10 mg but
someone (a dr) told me that was a pediatric dose and prescribed more. Maybe
I should check that out with a specialist.

I have had a few mild adrenal crisis' and I have to say, you should educate
the people around you because it is hard to recognize it in yourself, even
if you know the signs. I tend to downplay when I feel rotten and one time I
even refused to go to the hospital because I was too sick. Diarrhea and
vomiting for three days. I couldn't have absorbed much of the cortisone I
took orally! Sometimes I wonder how I am still alive. I think that the
lack of cortisol can muddle your thinking. So make sure the people around
you know when to drag your butt to the hospital.

Good luck!

Renee in Canada
cross-posted JWG

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I also had the honor of having both my adrenal glands removed in 1986. I must agree with your Endo you will have to find out for yourself what works best. My current dose took several years to perfect. I had to have my Hydrocortisone doses decreased due to weight and height. I take 10mg in the am and 10mg in the pm. This may also be an issue for you. Dosage timing and spacing highly impact how you feel. For me I don't take my am dose until I've been up at least 1 hour and my pm dose about 9hrs later. You will have to see what works best for you. Maybe you could take your 1pm dose a bit later and you may not hit the brick wall at 3pm. Just a suggestion. As for the adrenal crisis I think you should discuss this with your Endo. I don't want to misinform you in any way. Best of luck and hope you find what works real soon.

Pris

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Pris,

Thanks for your help. I think I'm getting there slowly. I've had a lot of helpful suggestions, including splitting the dose in to 4 and taking at 5 hourly intervals. I'm usually up very early and I'm starting to find that what works best is 10mg at about 6am and 10mg at 12 midday. I don't find taking an extra 5 at supper time or splitting the midday dose makes any difference.

I was most concerned of late about my blood pressure, which can drop to as low as 105/45 by early evening. The endo has just increased my fludro from 100 to 150mcg and I do feel a little better.

Best wishes for Christmas and the New Year. Richard.

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Richard,

I too do not have adrenals any longer as I have had them both removed with accompanying pheos caused by having VHL. The last adrenal was removed in 1997 and so it has been almost 10 years now. It did take a few years for my endocrinologist and I to figure out the best regime for me with respect to replacement medications. I know that diet, exercise, activity, stress levels and lifestyle management all play a role into the levels and how you best manage those for effectiveness.

For me, we found that .1mg of fludocortisone every other day and 15mg of hydrocortisone in the morning and 5 mg in the evening, daily is what works best. If I am training or exercising heavily, or not feeling well, I can take an additional 5 - 10 mg of hydrocortisone/day. During something as enduring as a marathon, I will take a few additional doses, but that is as needed and depends on a number of factors.

I can only speak from my experiences, but I have found that a holisitc approach to overall health and physical maintenance, along with trying to maintain the lowest level of artificial inputs as possible have made a big difference. I am not saying that I don't ever "hit the wall" - I do loose steam in the afternoons sometimes, but taking a few minutes to relax and recharge or simply taking a brisk walk or changing the scenery has seemed to help me regain momentum and focus.

I recognize that everyone has different experiences. I would urge you to work closeley with your endocrinologist to figure out a regime or plan that works well with you. As I am sure you know, playing a role in your own medical care makes a big difference. Be a part of your team and commuicate with them actively and often - this will help you to achieve your medical goals and improve quality of treatment and life.

Best of luck to you and God Bless,
Camron

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I've been almost 40 yrs w/o adrenals. I had absolutely no problems until a year or so ago. I had been on the same dose of hydro-cortisone and florinef all that time 12.5 mg 3xdaily and .05 mg florinef. So I never linked my new "symptoms" to adrenal problems. Then my doc started "tweeking" my dose and when I took it. It has made a huge difference/improvement! I think it is very individual based on diet, stress, exercise...everything. The docs at NIH suggested I try to get by with less do to bone/female/osteo issues, and I now take (total) 30mg. I take 10 w/breakfast, 10w/dinner and 10 w/bedtime snack. I still sometimes get a small"smack" midafternoon, but it goes away in 30 minutes. I also take MANY meds, and my doc carefully has me not taking some meds with others. Keeping track of all this is almost as difficult as why I'm taking the stuff!

Take care,

Jacki

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Camron,

Thanks for your advice. I'm sure I'll get there. Having worked in the law enforcement field for 26 years and been fit and active, it has been a great come down to only just be able to run across a road now. Best wishes for Christmas - about the only two weeks when I am left alone by the medical profession! R.

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Jacki,

Thanks; I must be patient! Best wishes for Christmas.

Richard.

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