I thought I’d share what has been happening to me these last few months and what I have learned the hard way. I hope you will be able to learn from my mistakes and successes.
Keep in mind that everyone is different and you will need to work with your doctor to determine what is right for you.
For the last eight and a half years that I have been diagnosed with Addison’s disease, I have done little experimenting to determine how to use my medications. I simply took a set minimal dose and never felt very well. By the beginning of February 2011 this is where this approach got me; to a point of collapse.
Symptoms of Collapse
cold (esp feet; hurts; like feet in ice water), chills, low temperature (92.3 to 95.6), difficult to move (feel very heavy), muscles cramp esp on exertion (neck and shoulders, legs especially), very nauseous, very dizzy, almost no short term memory, confused, unable to think much, depression, blood pressure low (105/70 p 73), ( my blood sugar stays pretty level with frequent balanced snacks) , constantly thirsty, frequent urination (1hr or less), legs jumpy (hard to sleep); trouble sleeping; very achy, panic attacks esp in night, pain in abdomen and back so that can’t move; abdomen puffy and hard; poor coordination (drop things, can’t grip); can’t focus well, dark circles under eyes, puffy under eyes, light hurts eyes; turn pale; suddenly stuffy and major drainage; fingers and toes are prickly or numb; difficult to breathe, chest pain (tight, like a weight on chest, unable to sit up straight or move), heart palpations, rapid heart beat; diarrhea, stomach acid heartburn (can’t sleep); gag when eat or drink, skin dry, itchy, sores, lips cracked; poor control of bladder; unable to move, trouble talking; vessels in legs shatter if bumped; ligaments not hold joints and pinch nerves; severe cough, shaky, anxious; hot flashes
All in all, a very unpleasant experience, but it sure motivated me to learn how to do better. I have been so afraid of taking cortisone that I wouldn’t consider taking anything beyond the most minimal dose. I kept telling myself that my feeling constantly like I have a flu was just how it was when your adrenal glands didn’t work. I also thought that I just needed to do less and rest more. I accepted that even a small shopping trip would cost me days in bed.
Collapsing this winter changed my perspective. It really scared me! I realized that I could die! What was I doing! Yes, I was afraid of taking cortisone, but now I weighed the risks. On the one hand, high levels of cortisone might lead to hypertension, diabetics, and osteoporosis. None of which I wanted to experience. On the other hand, it would hardly matter if I was dead. At best the symptoms I was experiencing when I collapsed weren’t doing my body any good and probably a lot of damage.
Risks in Perspective
I also had to remind myself that the dangers of taking cortisone are from taking excessively high doses for long periods of time. I was taking hydrocortisone (also known as Cortif) which is a very mild cortisone and not the much stronger and better known prednisone which most people take for limited times for skin conditions and joint problems. Prednisone is 15 times stronger than what I take and long lasting, while mine is identical to what the body normally produces. I am not adding to any existing level of cortisone my body is producing; I don’t produce any. I’m just trying to figure out the replacement amount my body needs and provide it, so I wouldn’t collapse again.
I also have blood pressure and blood sugar monitors. I can check and see it my blood pressure or blood sugar are going up. If they are all right then my level of cortisone is not excessive and I shouldn’t have any of the problems associated with high levels of cortisone. My guides are:
If my blood pressure is less than 100/60, then I need more medicine (hydrocortisone and fludrocortisone). Actually, I do best when it is 117/ 80 to 122/80 with a pulse of around 75. I feel awful when my blood pressure is 110/75 or lower. Right now my problem was that it is too low. I did try a higher dose of hydrocortisone for a week and my blood pressure and blood sugar did slowly go up. When I realized that they were consistently a little too high, I cut my dose of hydrocortisone down again, and the next day everything was back to my normal levels. It wasn’t fast or scary. I have confidence now that I can easily monitor and adjust my medication levels. I check my blood pressure at least three times a day (more often if it isn’t stable or is too low).
I also look for a fasting blood sugar level of 75 to 85. A daily level around 95 with raising not more than 40 after meals. Eating balanced snacks (40 complex carbohyrates, 30 protein, 30 fat) helps my blood sugar stay stable and helps me to feel better. I eat three small meals and three snacks each day. A good snack for me is a quarter cup of nuts and an apple. I eat lots of beans which also helps keep my blood sugar stable.
I take it three times a day before I eat. I try not to take it within thirty minutes of exercising or a meal. If it is below 95 in the morning then I know I’m stressed. After taking my hydrocortisone it will come up to 97 or so.
It helps to check several things to see if I’m stressed.
For example if I get up in the morning and my blood sugar is 70; my face is very pink, my blood pressure is 103/70 pulse 90 and temperature 92, I know I am stressed and need to take my morning dose of hydrocortisone and fludrocort immediately. Actually, I do much better if I take my medicine first thing in the morning. I’ve also found that I do not have to take my medication with food. I can take my medicine anytime as long as I take them with just a full glass of water.
Armed with such thoughts, I finally had the motivation and courage to learn what my medications do for me. I tried different doses of the two steroids I take: hydrocortisone and fludrocortisone. I tried taking them at different times of day and at different amounts. Here is what I learned.
It helps keep life balanced and good. When my levels are too low of cortisone, I become depressed, achy, tired, nauseous, and have headaches and muscle cramps. Though hydrocortisone has some effect on blood pressure, it is principally concerned with blood sugar. Even high levels of hydrocortisone wouldn’t raise my blood pressure much.
It controls mineral balances, principally salt and potassium, and will consequently affect blood pressure. It will raise my blood pressure, but it may take a few days before it will take effect. It doesn’t effect blood sugar much at all. You need to take extra potassium when you take Fludrocortisone because it will cause your body to dump potassium which will cause your blood pressure to go up too much. I tried dropping one potassium pill and my blood pressure did go up. I take four potassium pills each day (10 MEQ each)
Go by symptoms not the clock
Giving my body hydrocortisone when it needs it is a good thing and what a normal body will do in response to any sort of stress. Since my body doesn’t produce any cortisone, I have to give it what it needs.
I know I need more hydrocortisone when:
tire quickly, headache and nerve pain in neck, joint pain and stiffness, foggy thinking, depression and/or grouchy, anxious, shaky, pink or tan face and neck, blood pressure, temperature, and/or blood sugar dropping, sleepy (esp afternoon) , muscles cramp when use, mild cramps esp in neck, mild chest discomfort (tightening), gas, not hungry, lose bowels, suddenly hot, no appetite, draggy in morning, better in evening
I know I need more Fludrocort when
My blood pressure is low 110/70 or less; I feel tired, nauseous which can be severe, dizzy, feel like on fast elevator - lightheaded. I feel best when my blood pressure is between 115/80 and 125/80 and pulse around 80.
If I’m getting too much Fludrocort my legs and ankles swell, and my blood pressure goes up to 140/90. I might go higher, but this is the point where I cut my dose and bring my blood pressure down.
Salt can bring up blood pressure if I’m dehydrated which happens often in the mornings, but continued high salt will raise blood pressure too much and cause swelling.
A little salt in my glass of water will help me re-hydrate in the morning and my blood pressure will be normal for me within an hour.
Endocrine problems run in my family, so there seems to be an inherited problem with resistance to hormones. Maybe we have odd shaped hormones or receptors. Anyway, I seem to need frequent breaks to exercise. About three times a day for about half an hour seems to work. I also need other short exercise breaks at least every hour. Exercise only needs to be at a low level, but I seem to need to keep moving for about half an hour at a time a few times a day. I think exercise may help my medicine go into my cells. I’m tried higher doses and not been able to bring up my blood pressure or temperature until I exercise. If I feel tired when exercising, I need to stop immediately. If I’m tired after exercising, I have to cut back on the amount of exercise, drop to an easier level, or take more hydrocortisone. Staying in bed over seven hours will make me more tired. I think my cells become too resistant and my blood pressure drops from being inactive for so long.
If I give my body the cortisone it needs, my blood pressure will go down and my blood sugar will be more stable. Stress can make both go up and my temperature too. I know I’m in serious trouble when my blood pressure, blood sugar, and temperature start to drop quickly. I know am going into shock and need more medicine quickly. When you are injured or ill you may need in double or even triple your dose of hydrocortisone to help your body cope with the stress.
Timing Is More Important than the Amount
After 2 to 3 hours is it pretty much gone
I can take 5mg or 30mg and it will not make any difference in how I feel, so I take the lowest amount. I’ve found that for me anything more than 5 mg at a time seems to make no difference
45mg a day at 2 hr intervals works well; in late afternoon and evening sometimes I can go to 3 hr schedule
It will not make the hydrocortisone last any longer if I take more of it at one time.
Now I am taking 5mg every two to three hours and feeling much better.
I take 5mg before bed and sleep better. I even take 5mg when I wake up in the middle of the night. This helps me sleep better and keeps my cortisone more level. If I don’t have the cortisone at night, I toss and turn, hot and achy, for much of the night.
I’ve had to remember that though most people want to take their highest dose of cortisone in the mornings and lower amounts later in the day (similar to the body’s normal production of cortisone) and not take any four hours before bed so they can sleep (usually 20 at breakfast and 5 lunch; 5 at dinner; 25 to 35 is a normal dose of hydrocortisone), people are different. I don’t produce any cortisone, so I have to supply my body with some to keep any level up. I also have several other health problems such as injuries, allergies, and chemical sensitivities which increases my need for cortisone.
Most people take one Fludrocort pill (.0.1mg) daily; it is long lasting and they usually take it in the morning
Right now, I am having symptoms of low levels of aldosterone (the adrenal hormone that the fludrocort replaces) 5 hours after the last dose.
I tried taking more fludrocort in the morning, but it just caused my blood pressure to go up too much in the morning and I didn’t feel well later in the day.
Now I am taking 1/4 pill of Fludrocort every 5 hours and my blood pressure is more stable and I am experiencing less lightheadedness and nausea
Dealing with Normal Stresses
If you know something is going to be stressful, taking more hydrocortisone before the event may help your body deal with the stress.
For me the hydrocortisone will be gone within 2 to 3 hours so I can’t take any much ahead. I just try and notice any symptoms and give my body what needs as soon as I can
If I notice any low adrenal symptoms, I take 5mg of hydrocortisone. Usually I notice that all symptoms are better in 20 minutes. If things are not improving, I take another 5mg of hydrocortisone. I continue this process until I feel better.
If I bring up my cortisol levels before I go to bed, then I will not have severe fatigue the next morning which can last for days. Also, my blood pressure will be all right the next day, but I may still tire more easily during the day and need a little extra cortisone to fully recover.
Well, I’m still experimenting, but I’ve learned a lot and am feeling better. The main thing I’ve learned is that I have to actively monitor my blood pressure, blood sugar, temperature, and medication. I have to notice how I am feeling and give myself the cortisone and fludrocort my body needs when I need it if I expect to feel well and live long. I’m also realizing that everyone is different, and we each have to find what works for us. I hope my experiences help you as you find what is right for you.