Saturday, June 30, 2012

My Experiences of Learning to Live with Addison Disease this Last Year

Thought I'd explain why I haven't added anything to this blog in about a year. Please keep in mind that these are my experiences -- everyone is different and you should consult with your doctor to determine what is the best treatment for you.

When I last wrote, I was experimenting with different doses of hydrocortisone (under my doctor's watchful care). I tried higher doses which
just made my blood pressure and blood sugar slowly rise, so I cut down and in a couple of days they would come down again. I tried lower doses and my blood pressure and blood sugar dropped. About 60mg of hydrocortisone seems to work for me and keeps everything more stable. This is higher than most people need, but I also have several injuries and allergies. When I take less I get depressed, shaky, dizzy when I stand or move, cold, fatigued, and nauseous. I also learned that medication does not seem to stay very long in my body, so I need to take some hydrocortisone every couple of hours. Though I take a dose in the middle of the night, I am still so low by morning that I need a double dose to get me going. I've also learned that hydrocortisone has a very short half life-- from 2 to 6 hours depending on the individual. I could take a stronger, longer lasting cortisone, but I feel much safer with just the natural replacement hydrocortisone. 

Though my dose seemed to be keeping my blood pressure and blood sugar pretty stable, I was becoming more and more tired with everything I did. Finally last December, I was unable to get out at all without becoming seriously ill for days afterward. We couldn't think of anything else to try. I was faced with the dismal prospect of having to remain in my home for the rest of my life. 

Determined that their must be something I could do, I thought I would try and simplify my life and see if that would help me feel better. As I was going through some CD's, my hands and face started to turn pink and itch. I went to my doctor, and after some tests, learned that I'm very allergic to petrochemicals. The next few months were spent getting rid of as many plastics, polyesters, and vinyls as possible. I had no idea they were everywhere in my home! I also had no idea that some of the chemicals in plastics can interfere with my body's ability to use different hormones. Now that I am living in a cotton, glass, metal, and wood home (I got rid of lots of things!), I'm feeling much better! With Addison's disease I have little immune function and do not have the normal protection a body should have against chemicals. I'm realizing since I do not this normal protection, I need to be far more careful to avoid chemicals in my home and food. I also found that getting rid of particle board has helped me feel  better. Both the plastics and the formaldehyde in the particle board were giving me headaches and making me feel more tired. 

Getting all these things out of my home caused me to feel better. Now I can get out and only be a little tired the next day. I had had hopes of living a "normal" life and doing whatever I wanted, but I'm coming to see that that is unrealistic. My body doesn't produce any detectable amount of cortisone. I am totally dependent on the hydrocortisone medication to stay alive. I will never be able to live a busy life, but do I really want to? I'm realizing that I need to monitor stress and rest and relax to compensate for stresses. 

At first I had hoped that I could just increase my dose of cortisone until I could do whatever I wanted when I wanted. I now see that this simply won't work for me anymore than a diabetic can up their dose of insulin and eat whatever they want. There seems to be a reasonable amount of hydrocortisone I can take, then I must limit the amount of stress to that level of medication. No amount of cortisone will allow me to live a high pressured life, at least not for long, then I will collapse. My doctor has told me that I push myself until I deplete my adrenal reserves. Actually, I think all I know is pushing. I've always been tired and seem to think that as long as I can move, I'm fine. When I run out of reserves, I abruptly stop like a car that runs out of gas, except I takes me months of rest to slowly rebuild the reserves I need. 

Now, I'm trying to identify the things and activities that cause me stress. After a big day out, like yesterday, I'm needing to spend a lot time today relaxing and resting to rebuild adrenal reserves. I'm struggling with setting priorities, planning ahead, and eliminating or delegating activities which are stressful for me. I'm trying to listen to my body, notice the early signs of exhaustion, and stop. It is challenging to live a more disciplined life, but I've really had enough of pushing then crashing. I am enjoying being able to make commitments and not have to cancel at the last minute because I am ill. Instead of trying to do everything on days that I feel better, I now pace myself and am able to continue doing something each day instead of rushing one day and barely being able to blink the next day. 

I'm learning that Living with Addison's Disease means learning to live a moderate life. 

12 comments:

  1. I was recently diagnosed with secondary Addison's. My pituitary produces low levels of ACTH, as a result the adrenals do not produce adequate amounts of cortisol, but the aldosterone levels are not affected. I had a pituitary lesion removed last November 2011.

    I also have Hashimoto's, diabetes 2, Sjogren's, sleep apnea, high blood pressure, and GERD. I came down with diabetes 2 about 10 years ago. I've never been over-weight, was thin all my life, which made diagnosing the diabetes 2 a bit of a challenge since most doctors think you must be fat and sedentary to come down with it in middle age.

    I began to gain a few pounds slowly over the years due to the developing hypothryoid situation, but the extra pounds were written off by doctors as changing metabolism due to menopause. I've always been very active, gardening and hiking, so the extra pounds were hard for me to understand.

    I think I may have what is referred to as Multiple Autoimmune Syndrome, or possibly Polyglandular Autoimmune Syndrome. At any rate, the diabetes 2 started first. It makes regulating my blood sugar a real challenge because when my cortisol levels gets low, I crash pretty bad, and my blood sugar has gone down to 32 a few times. But in the mornings, if I don't take my diabetes med, my blood sugar will go above 200.

    It also makes regulating my blood pressure a challenge. In the mornings I still have to take my high blood pressure medicine--if I don't my pressure goes up, but toward the evenings, the blood pressure plummets, along with blood sugar, due to decreased levels of cortisol.

    I have to take prednisone because hydrocortisone is unavailable in pill form where I live. Prednisone does not get used up as rapidly as hydro, but it is a bit more stressful on the liver. It is also 4 times as strong as hydro, so I take 5 mg in the morning (equal to 20 mg of hydro), and then around 3pm I take 2.5 mg (equal to 10 mg of hydro). At night is when I start to crash, so I usually end up taking 1.25 mg (equal to 5 mg of hydro).

    I take Synthroid and Cytomel for the Hashimoto's, and I use a bipap machine for the sleep apnea. Before I had the pituitary lesion removed, I also had central sleep apnea but that is now gone and I have just the upper respiratory obstructive sleep apnea. For the Sjogren's, I use a special toothpaste, and thick gel eye drops. About every 2 or 3 months the lymph nodes in my neck get swollen and achy due to the Sjogren's, but the prednisone I'm taking for the secondary Addison's is helping a lot with the Sjogren's symptoms.

    I am so glad to have found your blog. I am learning a lot from reading about your experience with this disease. I really appreciate that you take the time out of your day to write and share with others on how you are handling the challenges of this disease. Everything I have learned about the practical aspects of how to handle this disease is from reading what others have posted online-- from your blog--and from various message boards, and I am therefore immensely grateful to you for sharing your story with all of us out here.

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    1. Love hearing from you. It is so helpful for us to share our experiences. I find that doctors have been able to tell me very little about how to live with Addison's Disease. We need each other.

      Mine seems to be Primary Addison's Disease. A lot of auto immune diseases run in my family and they suspect that the outer cortex of my adrenal gland has been pretty much destroyed. This is why I don't produce any detectable level of cortisone or adosterone (fludrocort replaces it).

      It sounds like you have many health problems to deal with. The endocrine system is very complex and interacts with each other part. You must find it a real challenge to balance it all. I will be happy to answer any questions that I can.

      I don't know if I'm technically a diabetic, but I must be very careful with what I eat. I can only eat very complex carbohyrates (mainly beans, and winter squash; 40% of calories) in combination with 30% protein and 30% fat (mainly from nuts). I can't deviate from this at all or my blood sugar will soar up past 200 then drop the next half hour to around 60. That sure makes you feel sick! My vision goes swimmy, dizzy, and I feel hot on the way up, and shaky, sick to my stomach, confused, anxious, and faint on the way down. This is why I'm extremely careful what I eat. I seem to do best if I have a couple of snacks between meals and don't go too long without eating.

      It seems that when your adrenal function isn't good, it really helps to try and keep everything (including blood sugar) as even as possible.

      I have put on weight too, but am trying to get to a point where I can exercise more and slowly lose some weight. Whenever I lose quickly (pound a week), I collapse then put on more weight than I started with in just a few days. I think it is too much stress on my body to lose weight very quickly.

      Could you order the hydrocortisone online or could your pharmacist? My doctor feels that there are far fewer side effects from the hydrocortisone, and I find it much safer for me to manage. I will have always have to take hydrocotisone, so I'm glad that it is milder and identical to what my body should produce. I feel more comfortable with that-- with just replacing what my body should be producing, but isn't.

      I have to take a dose of hydrocortisone in the middle of the night (5mg) to help keep things more stable, and at times, I've had to get a snack too to keep the blood sugar from getting too low. If i take too much hydrocortisone at night, I'm not tired and can's sleep, but if I don't have enough I'm sick to my stomach, have headaches, neuralgia, achy, crampy, anxious, and can't sleep.

      Wish you well in learning how to manage your health. Hope to hear from you again.
      Cheryl

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  2. Hi Cheryl,
    On occasion I have to get up and take a small chip of prednisone in the middle of the night, otherwise I toss and turn, feel jumpy and jittery, and can't sleep. Sometimes I take it right before I go to bed. It's always changing, so I just have to go by how I feel and by what my blood sugar is doing. If the sugar is crashing (which it seems to do in the evenings) and I can't get it up to a good level even after trying, then I take a chip of prednisone and that seems to even things out.

    Hydrocortisone is only available in Mexico by injection. The only cortisone type medication available in pill form here is prednisone or prednisolone. The Mexican gov't does not allow any medications to be ordered from outside the country and delivered into the country by mail order. Any such package will be inspected and held up by customs. I once got my daughter to mail my over the counter gel eye drops to me from NYC. Mexican customs held it up and refused to let me have it, even though they were just over the counter eye drops. Each country has its own rules, so I'm not upset. I just accept it and deal with it. The US certainly has rules that appear strange to people from other countries, so that's just life.

    I could bring back a suitcase full of hydrocortisone from the US, by plane, the next time I visit over there, but I don't have a US prescription for it. And to get a Rx would mean getting a US doctor to accept my foreign made diagnosis, and they never accept tests from other countries. So I would have to repeat a lot of diagnostic tests in the US, that I've already had done down here, and it would mean staying in the US a very long time to get all that done. So it's not worth it. Prednisone is very cheap here, and I don't need a Rx to buy it.

    The diabetes, Sjogren's, and Hashimoto's that I have are all autoimmune disorders, so I wonder what is going on with my pituitary, and why it's not sending enough ACTH to the adrenals, or maybe there's not enough CRH coming from the hypothalamus, and coiuld any of that could also be autoimmune? I know there are tests to determine if the issue is with the pituitary or with the hypothalamus, but those tests are a little too sophisticated for the area where I live. even a simple cortisol in serum test is a challenge for the labs here, and a waste of money since they won't process the specimen properly and therefore the results will be invalid. I just do the best I can, and so far I'm doing much better than I was a year ago, when everything hurt and I could barely walk.

    I'm convinced that the only way for most people to get better is to take things into their own hands and trust their own ability to know their own bodies. And this is the message I get over and over from reading blogs and message boards, so I know I'm not alone in my opinion. We have to be our own best health care advocates, and trust our own instincts, go with our gut.

    I got some repeat thyroid labs this morning and will get those results back on Tuesday. I'm thinking I need to jiggle my thyroid medications again, going by the increasingly lousy way I've been feeling. I'm waiting to see what my free T4 and free T3 look like.

    I'm breaking this into 2 messages since it's too long to post.

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    1. I didn't realize that different countries are so different on medication.

      Hope your tests give you information on what to do with your Thyroid. Mine is always low but in "normal" limits so I don't take thyroid medication. Supporting my adrenals seems to help my thyroid. Since the adrenal glands are the master controllers of the entire endocrine system, that makes sense.

      I also have to take some hydrocortisone in the middle of the night. I'm just awake and am achy and can't sleep. If I don't take enough hydrocortisone, I also get bad headaches, neuralgia, and sometimes panicy and sick to my stomach.

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  3. I wake up once or twice a night miserably hot, throw off the covers and wait to start freezing before I cover up again and try to go back to sleep. It's in the 40s and 50s here every night of the year, which I love (we live at 8000 feet) so we sleep under piles of blankets, but I end up hot around 3:00am, just horribly hot all over. When my thyroid is more or less in balance, this doesn't happen. But I wonder if it could also be cortisol related? Does this happen to you?

    I went to visit my son and daughter in law when they had the first grandchild, this past July, and I worked nonstop every day cooking, cleaning, mopping, doing laundry, etc, and I slept like a rock every night, and had a wonderful time. I already miss the little grandson so much. And I had no night sweats! They live at sea level, so I wonder if the altitude here is a reason for the night sweats? Or maybe my thyroid was more stable then, and now it's gotten wacky again? (Hashi's is always changing.) So I'd love to hear from you to see if you ever get night sweats, and if so, what do you think it might be?

    I've gotten sick twice in the past 3 months---vomiting, diarrhea, stomach cramps---from food poisoning. I'm very susceptible to catching things like that, and here in Mexico it's always a challenge to keep from getting sick when one eats out. We don't eat "street food" and I'm very careful about not eating lettuce, things like that, but all it takes is for one cook to not wash their hands. And we don't eat out that much for that reason. But sometimes we have to go into the big city for errands, and we end up having to eat because the errands take all day. I think we'll have to go back to our own rule of only eating at McDonald's or Burger King because they are always clean and we've never gotten sick from their food. The food may not be the most healthy, but not getting sick is more important bc getting sick sure throws me into a very long down time.

    I'm thinking that a lot, so much, is all related to the adrenal situation, the thyroid too of course, it all goes hand in hand. It's an ongoing challenge to get these things into harmony, without over dosing on the prednisone. I know of some people who've had bilateral adrenalectomies who take only 15 mg of hydro each day, and I just wonder how they manage on so low of a dose. I have to accept that our bodies are all different, and right now I need to take (the equivalent of) 30 to 32 mg of hydro each day. Whenever I try to cut back on the dose, I quickly go back to feeling awful all over, bones hurt, joints hurt, blood pressure crashes, and blood sugar too.

    Thank you for writing back. I appreciate it very much. Let me know if you experience the night sweats, when you get time to write again. Thank you and have a lovely weekend!
    Gail

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    1. Yes, I do get night sweats, but not too often anymore. It can also happen in the day. I really think it is related to low levels of cortisone in my body, which of course also affects the thyroid which regulates temperature. When I get overtired and don't have enough cortisone "cover" I can get suddenly very hot and just start dripping. When this happens, I know I need more medication and it goes away. We are at a pretty high altitude here in the Rocky Mountains and I've had the sweats at sea level, so I think it relates more directly to my cortisone level. I've watched it happen over and over and go away when I get enough medication. Glad you had a good visit with your family. Grandchildren are wonderful!

      Did you take more medication when you had food poisoning? Some of the best information I have seen on living with Addison's is Addison's Disease Self Help Group www.addisons.org.uk
      It tells about how to adjust medication for illness.

      Yes, I sometimes wonder how people can make it on such low doses of hydrocortisone when I can't. I get sick every time I try to cut my dose. It may be my injuries and allergies add up and/or I just don't absorb the medication well. I really don't know, but I agree with you that we have to take responsibility for monitoring our own health. There is so little known about managing low adrenal function and we are all so different. Autoimmune problems and low adrenal seem to run in my family.

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  4. I think the food poisoning had been slowly building up over 2 or 3 days because I had queasy feelings that would come and go. As soon as I woke up sick in the night, about to vomit, I asked my husband to bring me the glucometer and the prednisone. My blood glucose was 50 and so then I asked him to bring me some white sugar. It was around 3:00 am and I wanted to get my sugar up quickly. I took the equivalent of 20 mg of cortisone (5mg prednisone) and then he gave me a 1 gram shot of ceftriaxona (antibiotic). In less than an hour I started to feel better. I got 3 more antibiotic shots over the next 3 days. I think I know the little lunch place (in our capital city) where we got sick (we both got it), so we won't be going back there again.

    Wow, thank you so much for the website link. I'll be going there a lot. I'm glad to hear your take on the night sweats--I think you're right that it is cortisol related and subsequently thyroid related. I got my free T3 test back and it was 3 and I read that optimal for free T3 is at least 3.3 so I'm adding a tiny bit more of cynomel (in the US it's called cytomel) along with my afternoon dose of prednisone. This is only the second day so I can't make any conclusions yet. And yes, I think because I have other issues (Sjogren's, Hashi's, diabetes, high blood pressure, sleep apnea, etc etc) that this is the reason why I just can't get by with lowering my dose of prednisone. I just can't. My goal for now it to eliminate the night sweats as much as possible so I'll play around with doses of prednisone and cynomel and see where it takes me.

    My CBC was a little off, I had high monocytes, low neutrophils, and a high lymphocyte count. This has been going on for a while now, so I think I should probably go to a hematologist to see what might be going on. But it could be a reaction from the food poisoning, it's just that I get sick about every 6 to 7 weeks, I guess because I have a lousy immune system.

    Down here, you have to stay one step ahead of the doctors because they just don't have the skill or education level of developed countries. A couple of years ago a doctor here told me that the reason I had a fever was because it was hot outside. Yeah, he said I had a fever because it was summer-time and it was hot.

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  5. You have to be very careful with food poisoning since vomiting can be fatal with Addison's. It is so easy for us to become dehydrated and go into shock. Getting plenty of fluids (even if it has to be done with an IV at the hospital) is essential.

    Predisone lasts much longer in you r system than hydrocortisone which only lasts a couple of hours. If you take more cortisone than you need it will suppress your immune system and you will become ill a lot. It you don't take enough, then your immune system doesn't have the support it needs and you will become ill a lot. If you take the right amount, then you don't become ill much at all. Tricky!

    Low blood sugar can make you extremely sick to your stomach! Glad you knew what to do and were able to take quick action. I have to eat four times a day or I'm very nauseous. If my cortisone isn't also up, then my blood sugar won't hold steady more than a few minutes, so I think also taking the prednisone is helpful.

    It will be interesting to see how the medication changes affect your night sweats.

    Low adrenal function will affect the levels of lymphocytes etc. in your blood. The adrenal glands control the immune system (along with everything else). In times of severe stress adrenaline will pretty much shut down the immune system.

    I have been thinking about your comment about sleeping well after some busy days helping your daughter and caring for your new grandchild. I exercised more yesterday and slept much better last night. Since my outer cortex of my adrenal glands has been destroyed (we think), I don't seem to produce any DHEA either. DHEA gives you stamina. I don't have much, but I am learning that I can exercise for short times. I can go for a gentle ten minute walk, then rest for at least a half hour. If I do this several times a day, I seem to get enough exercise to get my blood pressure up, feel better, and sleep better. I am going to experiment more with this this week.

    Hope you have a good week.

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  7. I have loved reading your blog concerning adrenal insufficiency/Addison's disease and other co-morbid conditions.

    I too am struggling with these things. I live in Utah as well. My cortisol levels hover just at low-normal showing I have no reserves and I have very low aldosterone levels. In terms of med dosage, I have managed to come down from around 37.5mg of hydrocortisone to 20/30mg depending on stressors; what really helped was adding in a strong dosage of progesterone. For over a year I took florinef but now for some reason my blood pressure is stabilizing and I rarely have to take it, although my aldosterone level is still low.

    Because I was not at the point of an adrenal crisis with below normal cortisol levels, I struggled to find a practitioner that was knowledgeable enough or interested enough to treat me. In the meantime, my thyroid was suffering, probably for several years--and then I knew things were bad when I could no longer get out of bed or stay awake all day...my hair fell out in handfuls, and I couldn't think straight or drive comfortably--and these symptoms were not peri-menopausal! It took me a lot of doctor visits and some humiliating experiences in order to find someone that would treat me here in Utah.

    Now, the latest addition that I have a diagnosis of is basilar type migraines, which occur infrequently but are seriously disabling. These began three years ago after a chiropractic adjustment to my neck that resulted in severe whiplash and a TIA. This event seemed to be the final straw that when combined with the changing hormones of midlife, has created increasing health issues.

    You mentioned that there can be a genetic relationship to this disease. I have a daughter that is now experiencing similar symptoms with hypothyroidism related to low cortisol. I would love to know if you know of a genetic connection for this that begins in the young adult years, as that is when mine started and my daughter's as well. I have not been able to find this type of relationship when searching online.

    When I read your blog, my heart ached for you because I recognize the issues at hand. Each day is different now and one has to learn to take one day at a time and be grateful for that time; because when the cruddy days come, they can consume all your energy. I also feel like I can't handle another disease or syndrome prognosis (I haven't listed the other issues) but I have learned to sublimate the physical and increase the metaphysical.

    I think overall, what I really appreciate is the time you've spent educating the rest of us about adrenal issues. Maybe in this way you share your light by further educating those of us who suffer as well.

    Thanks so much--
    Lisa

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  8. Sandra
    I didn't find out until my adrenal glands were almost totally shut down. Though sometimes the adrenal glands are destroyed and will not recover, you can learn to live with it and feel fairly well. It is like a diabetic, you learn to listen to your body and how to use your medication. I have learned what stresses me and when and how much medication to take. I am also learning not to push myself and rest and relax when I need to. My prayers are with you.

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  9. 'm glad my blog could help you. It is so hard to deal with something that little is known about.

    Endocrine problems run in my family - rheumatoid arthritis, diabetes, Thyroid problems; Graves disease, Addison's disease

    My doctor (Dr. Dennis Remington in Provo, Utah) said that people can inherit abnormally shaped hormone cells and cell receptors which makes it so that we do not receive or use the hormones as effectively as other people do. We can also inherit genetic weaknesses of certain body systems.

    It usually takes time for the Adrenal glands to become fatigued and depleted so it usually shows up in the early twenties. This especially happens with women as they have the stress of child bearing. My daughter also has had problems with low adrenal function at that age. She rested and took some supplemental cortisone for a while and is doing much better now.

    Since the Adrenal glands are the master control of the entire endocrine system, it is very common to also have low thyroid if you have low adrenal function.

    Low adrenal function affects blood pressure. It will be low which can result in migraines. I feel much better when I drink plenty of water, exercise moderately, and take my fludocort for the water balance.

    Often the adrenal glands become over stressed after an accident. I have several spinal injuries. It takes a long time to recover, but it can be done.

    I also got the "it's just menopause" brush off. Hormonal changes do make low adrenal function worse. I feel much better now that it is over.

    Your hydrocortisone will help to stabilize blood pressure also. If you only need a little, it might do.

    As you rest, relax, and nurture yourself, you can feel much better. Hang in there!
    Cheryl

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