can anyone help me with tips on how to manage addisons extreme fatigue, headaches and muscle weakness even though my endo tells me my meds should be sufficient.
Most endo prescribe approx. 20 mg of hydrocortisol or 5 mg of prednisone. They might break it into 2 doses. This is what their medical books tell them.
Initially I was put on 5 mg of prednisone taken once daily. I took it with my morning breakfast, since this is what it said on the informational packet that comes with the medication. I would have to drag myself out of bed every morning. I would get up for a little while, then I would lay on the couch until noon before I would feel like doing anything. The reason for this it that it takes about 3-4 hours for the prednisone to start working. Plus, I was taking it with meals, so that slowed down the process.
After about a year of playing around with different medicines and doses, this is what I came up with.
I take 1 mg of predinsone at bedtime. This gives me a base amount that last most of the next day.
I take 5 mg of hydrocortisol at 3:30 AM. For some reason I wake up every morning at this time. I believe the reason for this is that this is when the normal adrenal gland should begin producing cortisol.
I take 10 mg of hydrocortisol at 7 am about 20 min before I eat my morning breakfast. This gives it time to absorb and is not slowed down by the food.
I take 5 mg of hydrocortisol at 11:30 am about 30 minutes before my lunch.
I take 5 mg of hydrocortisol at 4:00 pm.
I also take an over the counter supplement called DHEA. I take 12.5 mg at breakfast at 12.5 at 2 pm. I use Natrol brand since it is checked for potenency… Most Addison’s men that take DHEA take around 25 mg and women take about 50 mg.
DHEA is a hormone that is produced by the adrenal glands. Most endo’s don’t prescribe or recommend it for Addison’s, but the ones that know what they are doing. I felt a noticeable increase in energy and well being when I started taking.
I also take .1 mg of fludrocort and 600 mg of calcium daily.
This the my addison’s medicine plan that I came up with. I figured this out after going on various message boards and seeing what works for different addison’s patients. I have a young open minded doctor who is ok with these changes as long as I am feeling good. Most endo’s might have a couple of addison’s patients and don’t really know how to aggressively treat it.
I have plenty of energy and live an active life and you can also. It is very difficult to fight to have your normal life back with several different hormones out of wack. But you can’t rely on your endo figuring this out for you. You have to be the captain of your own ship.
I would "play around with your dosages and timing and figure out what works the best for you. Then go to your doctor and say this is what I did, my overall well being is better, and I want to continue it. It is hard to do with addison’s, because if you are under dosed in your cortisol, you feel very passive and “go with the flow”.
I hope this helps you and that you have find better days ahead.
Chad
Iowa
Hi Chad,
Thanks so much for your detailed reply, it have found it so valuable. I have been so tired that yes, I just go along with the flow, however I know that I don’t feel right. Your reply has given me that inspiration I need to review what I am doing and what works for me, I can’t thank you enough.
I am going to try altering the timing and amounts of my meds because I too have to drag myself out of bed and then sit around for hours and often will fall asleep in the afternoon (obviously not if I am at work!).
DHEA is banned in Australia however I am going to check out homeopath stores/natural therapists to see if I can get some that way.
Thanks again, I will keep you posted.
Cheers
Jacqui
Just from your description, it sounds like you are under dosed. The key to addison’s is to have enough cortisol available in your system when you need it. Normal person’s adrenal glands probably produce about the equivalent. of 10 mg of hydrocortisol a day. But when their boby needs more, it automatically spikes it’s production. People with addison’s disease do not have that luxury. That is why most people need 25-30 mg of hydrocortisol a day. Even though you have more than you need most of the time, when you stress your boby it is available.
Most endo’s keep their patients on as low as dose as they can, usually around 20 mg. The doctors are afraid of the side effects of the cortisol use. The truth is that the people who suffer from side affects are the ones who use it to suppress their immune system and are on much higher dose. I would recommend that you take a calcium supplement, though as cortisol does rob your body of calcium. You should also have a bone scan (dexa scan?) every couple of years to make sure.
Every addison’s patient is different in lifestyle, metabolism, size, and shape and must develop their own plan to match it.
Good luck and you WILL get back to an almost normal life!
Chad
I really appreciate Chad’s input as to timed dosages.
I take 20 mg… hydrocortisone A.M. and 10 mg. P.M. with
0.1 mg florinef. I take it with breakfast, but I am going to start
taking it as soon as I get up as suggested. I, too, am so
fatigued that I can not get going until around noon. I, also,
have been diagnosed with multiple stones in both kidneys and a mass in the right one. I am having more tests next
week. This is really painful.
I was diagnosed in April 1974. I have been to many endocrinologists in this country. In the beginning I did not take Florinef/ Go to the link to the National Institute of Health - if you cannot click on it, copy and paste it to your address bar. http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682549.html
I suffered from muscle weakness. When your electrolytes (sodium & Potasium) are not controled, it is very dangerous. Your sodium drops low and your potasium becomes elevated. Have your doctor prescribe the correct dose and I believe many of your aches will disappear. Also, my doctor says not to take my afternoon dose of cortef if I do not remember it before 6 pm. Since it is adrenaline replacement it may not allow you to sleep well. In a normal biological clock, your adrenaling peaks around 7 pm and is at its lowest at around 5 am. The sooner you take it in the am, the better you should feel. I hope this helps. Learning about your disease it the best way to learn to live with it. Here is another link to the NIH - Mayo Clinic http://www.nlm.nih.gov/medlineplus/addisonsdisease.html
DO ANY OF YOU EVER HAVE BLACKOUTS? THIS HAPPENED TO ME LAST
SUNDAY AT MY DAUGHTER’S. IN FACT, I WAS ACCUSED OF OVERMEDICATING
MYSELF TO DRAW THE ATTENTION TO ME. WE HAD GONE FOR MY GRANDSON’S BAPTISM. I KNOW THAT I TOOK 1/2 OF MY XANAX PILL TO
SLEEP SAT. NIGHT, BECAUSE I WAS IN A LOT OF PAIN AND WAS IN A
DIFFERENT ENVIRONMENT. IN FACT , MY MOTHER, MY OTHER DAUGHTER,
MY GRANDSON, AND I STAYED IN A MOTEL. MY GRANDSON AWOKE SEVERAL
TIMES DURING THE NIGHT, AND MY DAUGHTER DID NOT GET UP WITH HIM–
I DID. ALL I CAN FIGURE OUT IS THAT I DID NOT GET TO SLEEP OFF THE
XANAX, AND IT WAS STILL IN MY SYSTEM SUN. RATHER THAN TRYING TO HELP ME COPE, ALL I GOT WAS YELLING. ANYWAYS, THINGS ARE NOT GREAT
IN THE FAMILY. MY DAUGHTERS ARE NOT SPEAKING TO ME, AND NOONE
WILL TELL ME WHAT I WAS SUPPOSED TO HAVE DONE. SO MUCH OF THE
DAY WAS A BLUR FOR ME. I HAVE AN APPOINTMENT MON. WITH MY DR.
HOPEFULLY HE WILL HAVE AN ANSWER FOR WHAT HAPPENED.
COULD IT BE THE BEGINNING OF ALTZHEIMER’S?
Two years ago I blacked out while eating Christmas Eve dinner at my sister’s. I was actually talking and started slurring my words and losing my peripheril vision. I remember my daughter (adullt) saying "Mom are ou going to sleep? That brought me around enough to get over to the sofa. I went to the doc the next week. She thought it was narcalepsey and sent me for sleep study. It showed sleep apnea and borderline narcolepsy. I now have a CPAP, but I am still skeptical that that is what happened.
Hi all - Thanks Chad - I have had addison’s for almost 11 years. I was switched from cortef to prednisone and believe it has made things worse. Your regimen has given me the push to take a more active role in my health. I have two crisis (the only 2 ever) in 2007 and 2009. I have not felt good all winter and spring. I take my prednisone at night - much better than morning - but still weak and low energy in the am - Thanks again.
I am brand new to Addison’s disease - I haven’t yet gotten the blood test results back - and am educating myself on all aspects of this disease. I’ve found a lot of factual info, but am really getting frustrated with how to feel better before the results of the test - I also have Polycystic Kidney Disease, which raises my blood pressure - the last few times I’d been in to the doctor, my blood pressure was almost normal - I did think that was odd, but it wasn’t until my weight plummeted to an alltime low of 126#! I was really sick in december with the flu that lasted 6 weeks. After that, my stamina has gone downhill. I am constantly light-headed, and now am getting headaches more often. I crave salty things - I also have a very touchy stomach, and often get sick first thing in the morning. I am now feeling nauseous more often during the day. I can hardly do anything - I worked in my garden - slowly - for 1 1/2 hours with breaks, and I am absolutely exhausted! I can hardly shake the cloud…, I work as a vet tech andI need to be able to focus. The air conditioning went out and it was 80 degrees all day - I almost passed out! I get test results back Monday or Tuesday… How do I know I’m having an “attack”? My husband is supportive, but also very frustrated as he doesn’t understand how I feel… We have a 2 year old boy to keep up with, as well as horses,and daily chores. Stresses abound. Money, moving soon, etc. Now my sides are starting to hurt -especially at night. Any suggestions? cbrmom
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my name is lenka grbavac
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