I've been trying to put off writing this blog post for a while. It's hard to admit that things that are completely within my control have gone haywire. Here it is. I am not looking for sympathy nor am I attempting to get attention. I want others to learn from my experiences.
I have spent a long time being over replaced on hydrocortisone. I didn't know it. I have always told people, "You will know if you're over replaced! You will get fat and not sleep!"
Because I get a lot of exercise, my hydrocortisone needs are higher than the average person's. Also, I think most of us think that if we feel bad, more HC will help us feel better.
From January of 2016 through July of 2016, I got A LOT of exercise and completed a run from the lowest point in the US to the highest point in the US. It was hot and the effort was physically demanding. It required a lot of HC. When I was done training and with the run, I gave my body some time off. I only taught spin classes and ran for fun. I couldn't do much more as I had splitting headaches (not migraines these were full on, straight up headaches). I noticed my blood pressure was crazy high. What did I do for this unrelenting pain? I took more HC.
The headaches and high BP persisted until January. I did try to get help from the medical community. Their suggestion: beta blockers or calcium channel blockers. My reply: NO. I knew that the high BP was a symptom of something being wrong. I needed to eliminate the cause of the high BP and headaches, not mask them and make myself incapable of exercise. I lowered my florinef to no avail. It might even have raised my BP. I got my thyroid checked and it was nearly perfect. Iron, fine. I went off all of the supplements that I was on that were unnecessary. Finally, I had nothing left to change.
In the mean time, I had become less and less able to exercise, sleep became less, hair falling out like crazy and I got a kidney stone. BP remained impressively high. Headaches consistent.
The only thing left to change was my hydrocortisone. Hesitantly, I decreased it on January 8. Within days, my headaches were gone. Within a week, my BP back to normal. Within two weeks, my appetite decreased. I hadn't realized I was eating so much and so often until I wasn't nearly as hungry. I think it's important to note, I didn't gain weight from too much HC. I always assumed that if I took too much HC, I'd get fat and I'd immediately know that I was over replaced.
It's been almost seven weeks since I decreased my hydrocortisone. My weight is about the same. I am sleeping better. My eczema has flared like nobody's business (because there's less HC in my system). My hair is still falling out badly enough that I will soon need to wear a turban. I'm not kidding. [I have read that hormonal hair loss takes three months to stop and then reverse, my fingers are crossed that the loss will slow, stop and reverse in the next few weeks.] I have what I think is a stress fracture in my foot, probably from spilling calcium. I am a hot mess but trying to learn from my experiences.
I am taking this less mobile time in my life to find a new routine in my daily life and exercise life. Live and learn!
Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.
Friday, February 24, 2017
Wednesday, November 23, 2016
I just met with a client. An intelligent, lovely, young woman who is struggling with many physical symptoms. She has been attempting to improve her quality of life for five years. She has seen ten or more doctors. In an effort to discover what was wrong, she went to a very well respected medical institution. She presents with nearly every symptom of adrenal insufficiency and was diagnosed with POTS. Her 9 am cortisol was 8. She was given Florinef and the information below.
When I read this "treatment plan", I cried. I cried for her and I cried for me and I cried for all of you (don't get the wrong idea, I didn't sob for hours. It was a few tears for each of us) who have been mistreated by physicians who have "great" reputations and very little knowledge.
This woman was nearly at the point of "definitive adrenal insufficiency" with her cortisol results but was not given an ACTH stimulation test. She was told to meditate and read for 20 minutes a day. This was in 2015, we are nearly to 2017. So much life wasted because a doctor only looked at lab ranges and had no idea about the circadian rhythm of cortisol in the human body. No amount of reading inspirational crap nor meditation has ever been documented to cure adrenal insufficiency. Worst treatment plan ever.
Saturday, October 8, 2016
The other day, I had a real life experience that reminded me why people with adrenal insufficiency need an injection kit. Negligent doctors will not prescribe Solu-Cortef and the needles (in some states, prescriptions are needed for the needles). It is standard protocol and life saving to have an injection kit on hand at all times.
"The endocrinologist has a responsibility to ensure that Addison’s patients have adequate access to life-saving emergency injection materials and repeated, practical training sessions in how to use them,while the general practitioner plays a vital role as in arranging prompt emergency admissions." Adrenal crisis in treated Addison's Disease: a predictable but under-managed event, Katherine White and Wiebke ArltHere is what happened to me. I went to sleep on Thursday night after spending some of the day in preparation for the approaching hurricane. Not a big deal, I was not stressed about the hurricane nor the preparations. I awoke twenty minutes later and thought, "OH SHIT, I'M GOING TO THROW UP." I have not thrown up for four years, since I quit drinking. I knew this was serious. I immediately put an 8 mg Zofran ODT in my mouth and grabbed a throw up bowl. I threw up immediately. I knew it was not over. My husband got my injection kit and began studying the directions. In the mean time, I contacted a fellow adrenal insufficient person and then threw up a couple more times. Stupidly, I was uncertain as to whether I needed the injection or not. The answer was a resounding, "Yes!" I hate shots so I tried to put HC under my tongue but it didn't make me stop throwing up.
"...gastroenteritis is a particular dangerous cause of adrenal crisis, oral hydrocortisone is frequently insufficient to reverse impending adrenal crisis, current education of patients is often not sufficiently effective, unwillingness to call for help...carries a huge risk, and at a certain point in time damage from adrenal crisis will become irreversible no longer responding to medical measures." Adrenal Crisis, Bruno AllolioHere is where things went wrong:
1) My husband didn't know what to do and felt the need to do everything perfectly as opposed to quickly. He was VERY slow to give the shot
2) I was hesitant to receive a shot despite its lifesaving qualities
3) I had several Acto-Vials that were expired and/or battered. It took several tries to find a vial that would work properly
I was given the shot by my husband with coaching from the AI friend. Her advice, "Just stick her now!" I didn't feel better immediately but the vomiting did stop after about an hour.
This is the part I want you to read if you have adrenal insufficiency and don't have an injection kit.
Hurricane Matthew was to take a direct hit on Vero Beach, Florida 2:00 to 4:00 am. I began the vomitfest at about 11:00 pm. If I had not had an injection kit, there was no way in hell that my husband could have gotten me to the hospital nor was there any way for EMTs to come to my house. I could have died waiting for the opportunity for things to clear up enough and roads to be open.
If your doctor has put you in the position of dying by refusing to prescribe an injection kit, find a new doctor or find the White and Arlt study that I quoted above and take it to your doctor. Don't die just so your doctor can be "right" that you do not need an injection kit. You do need an injection kit. It could save your life.
An injection kit should include:
- 100 mL Solu-Cortef Acto-Vial
- 21 gauge needle
- 25 gauge needle (length will depend upon how much fat you have on your leg)
- Zofran ODT (I can't stress the ODT enough) ODT, ODT, ODT
- Alcohol pads
- NADF emergency crisis form
- Instructions on how to give the shot are vital. I like the NZ Addison's injection directions
- A few hydrocortisone pills and some salt pills