Wednesday, September 22, 2010

Entry #23 - Addison's-We are not machines!

Prior to my diagnosis with Addison's, just about ten years ago, I had been told, repeatedly, that I had a sodium deficiency. It was one of the signals of my undiagnosed Addison's disease, but the puzzle pieces had not yet been put together. Initially, I did not really crave a ton of extra salt, but physicians had been telling me to make sure to add extra salt to my food. My doctor appointments would always reveal extremely low blood pressure and blood work would show sodium levels to also be too low. Doctors would conclude that everything could be solved by me adding extra salt to my food.

A Favorite Family Dinner
(Grilled chicken sadly not present for picture.)
I began adding salt to the food on my plate. At home, I'd grab the salt shaker and sprinkle it all over my plate. In restaurants, I'd add a light layer of salt to my food. Salt, salt, salt. But, my blood pressure still remained abnormally low.

No one knew, as I became very ill, that an unknown auto-immune disease was attacking the cortex of my adrenal glands and wreaking havoc on my body.

In the weeks before my official diagnosis, I had gotten to the point of craving V8's. I'm not talking about a "that sure sounds good" craving, I'm talking about a "I need a V8 moment from out of this world and can't focus on anything else around me until I get that V8" intense kind of craving satisfied. My mother watched me down multiple V8's over a long period of time and she was perplexed. My mother actually questioned me, "Do you think you might have some sort of mineral deficiency?" I told her that I'd had all kinds of blood work done at so many of those doctor appointments and all that could be found, as far as a mineral deficiency goes...was the need for more sodium. Perhaps that was the reason I craved V8's so desperately, for the high sodium content. I began to think it made sense.

 Looking back, I realize that those cans of V8 helped to maintain my body functions. With aldosterone levels disappearing, these V8's were helping to somewhat replenish the sodium in my body, but that wasn't going to be enough. Soon, things would progress far beyond a V8's ability to give me a mysterious energy "fix." Eventually, I would not be able to even sit up to drink anything.

After my diagnosis with Addison's disease, I began taking Hydrocortisone and Florinef. This meant I no longer had the severe cravings for V8's. However, in talking with other Addison's patients from around the world, I have found sodium levels to be another area of fluctuations we must confront on a serious level. Of course, it makes sense that people living in the South or in parts of the world with higher temperatures would have more trouble with dehydration and sodium regulation; it comes with the territory and is our "normal" part of life. For friends with Addison's who live in milder climates, they may still have to manage their sodium levels. I have an Addison's friend who is an avid tennis player and he needs salt replacement on a regular basis. Then, there are others who live in cold climates, but they sometimes travel to harsh, hotter climates which can throw their sodium levels out of whack. Regardless, if you have Addison's disease or any adrenal insufficiency, you need to make sure your sodium level is as normal as possible and that you remain hydrated.

Most salt substitutes also contain potassium. To meet my personal health needs, my Dr. regularly checks my blood levels and this includes my potassium levels. Since my life here in Texas is very active, I'm often outdoors. We have acreage in the Piney Woods where I love to hike, and I have a beach just down the road, so I must sometimes replenish my sodium and potassium levels. Klor Con is also used as a salt substitute for some people because it is mixed with salt. My Endocrinologist prescribes this medicine to me. Klor Con is a form of potassium chloride that helps replace lost electrolytes. However, in high levels, this can be toxic. You must show a need for this medication before a Dr. will consider prescribing this supplement. For me, it is a tremendous help. But, it is not a pill that is a part of my daily Addison's maintenance program; I have learned to be wise about when I need to take Klor Con and when I need to leave it in the bottle.

The past ten years has taught me to be finely in-tune with my body. Changing conditions, externally and internally, require diligent attention and action. If you have Primary or Secondary Addison's disease, this is something that is learned over time, like anything else. The thing that is so unique about this disease is how one person's treatment may be different from another person's. You must find what works for your body, especially knowing when you need to increase particular meds or taper. Keeping a journal might help. Sometimes, the process of looking back can be a powerful tool in managing your disease.

If you are struggling, please consider (for at least for a month) recording your activities, your dosages and times (which should be on a regular schedule), the climate (hot days and cold days can impact a person with Addison's - it can cause physiological stress, depending on exposure), your fluid intake, diet and sleep can help increase your chances of having lots of good days by reviewing this health journal. I did this, off and on, for years before I developed a keen sixth sense via lots of homework and experiences. Just keep in mind that your regiment might require additional attention for changing circumstances. That's the part of having Addison's disease that can be most challenging...knowing when to take additional action. However, even with the best plan and the most diligent action, Addison's disease can still throw cheap daggers your direction. We are not machines. If it were that easy, we could plug in codes and commands and we would run perfectly. If we were machines, we would not have developed Addison's disease in the first place. Unfortunately, we are not mechanical, so there will always be unknown variables as obstacles. So, do your best. Part of my personal plan is to also say my prayers; God has seen me through times of health troubles after medical intervention sputtered. Develop a strategy, but don't beat yourself up when things go wrong or when you have bad days. Many people with adrenal insufficiency experience difficult struggles, physically and emotionally, remember that you are not alone.


  1. This is a timely post for me as I am in a bit of struggling period right now. My thyroid is low and I have to wait another month to find out of I should go back on synthroid and I started medication for a stomach motility problem.

  2. Lana - the good news is you can just hit the arrow on my music player and it will do its thing. I turn on/off the auto play depending on my posts.

    The bad news is I was in the hospital last week. I went in with partial blindness and parasthesis (paralysis). I've got several new diagnoses to go with the others. Pernicious anemia (B12 deficiency) appears to have caused some nerve damage. Polycytosis (high red cell count), don't know what that is contributing. The vision is the result of swollen optic nerves, from a rare condition called pseudotumor cerebri, which causes high pressure in the brain. Don't know why I have it though, it's usually the domain of obese women. How weird is that?

    This ordeal has knocked me down pretty good. I'm trying to get my strength back so I can get back to work and focus on this rather complicated health situation. Thanks for checking in with me, Lana

  3. 1) Holly - I will email you. I know you have been struggling...are you staying with same endocrinologist?

    2) MichaelO - I knew something had to be wrong, but was hoping you were on vacation. I bet you wish the same thing. :-( Just so you know, I have had huge issues with Pernicious anemia, but I have no idea about the rest. I am accustomed to have low red blood I don't understand the high red cell count. The high pressure in the brain doesn't sound so hot. Maybe that has put pressure on your pituitary also??? I've also had my extended foul health issues beyond adrenal problems, so I know it's difficult to sort through. I feel so awful for you and for your family -- there's no happy response other than I hope you start feeling better, very fast. It's good you are trying to rebuild your strength; one step at a time is sometimes the best we can do and sometimes that really is BETTER than good enough. You have so much to keep fighting for...your family...your music...your song-writing, etc. Sure wish I had a magic wand to wave your direction. I don't, so I'll say a prayer cause I know prayers travel across the miles and touch the person prayed for. It's done. It's coming your way. Meanwhile, keep up the battle.

  4. So frustrating to have things out of whack, but not be able to pinpoint the problem!! Annie's trending low these last 2 days--especially today--but I have no idea why. I gave her an extra little hydrocortisone just now, and she seems to be better. I just hate not knowing what to do--or what exactly is wrong. It is so much a "managing" type of illness...but because it's endocrine, if you adjust one thing (salt) you need to adjust something else (potassium)...or another thing (fluids). Very frustrating!


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