Not sure where I am going with this. I just know I don't feel all that well at times. I have quite a lot of things going on and autoimmune seems to be my biggest issue. I have an autoimmune arthritis and also hypothyroid. The hypothyroid was treated a long time ago, was left untreated and blood work was normal in reference to that for some time and now I am back on treatment due to a recurrence of being hypothyroid again. I have a feeling I have always been hypothyroid though. I do also have allergies as well as asthma or at least shortness of breath for which I do have medicine and an inhaler (dx as an adult).
The tricky part is figuring out what is going on. I have so much going on. I also have GERD. I think it has been since about 2008 I have begun to feel worse. I have fluctuating blood pressure, sometimes high and sometimes low. I also have lost weight, it started out very rapid VERY and now it just comes off gradually each month but not too bad like last summer. I get so tired I don't get out of bed for sometimes a day or hours. Not to eat or anything. I feel drained. This usually happens the day after I have had some sort of stress either emotional or physical like grocery shopping etc. I cannot describe how tired I feel because no one seems to understand how bad it is until they see it. My potassium is severely depleted through urine and blood testing while I am on prescription supplements daily. I also have low aldosterone as well as low renin levels. I did have surgery back in Jan. of 2010 on my abdomen. I seem to have a really good doctor on my side helping me figure this out but I am just kind of scouting for information on my own. I do also have some other blood work that was out of line like my creatinine was high but barely.. the magnesium I believe was at the maximum but not high.
Anyway ... I just hate it when I can't move because I am so tired. I guess my biggest question out there is can you have something like Addison's yet have a LOW potassium level consistently? The only once or twice I have blipped into the normal area it was just barely above normal and did not stay that way. My new doctor is trying a potassium sparring med called amiloride. I did notice though i am feeling pretty bad still. Last night was so bad I felt like an anvil was on my chest, short of breath and I almost passed out. My blood pressure right before that was not high but I don't really consider low- it was about 103/75. I usually fluctuate between that and high at about 140/94 at best. I just was looking over everything Medhelp has explaining Addisons and the only thing I can't associate my history and myself with is the high potassium. I mean everything sounds like me and I have never fit the bill for anything I have been dx with before so well.
Just another update. My blood pressure tonight taken at my usual time was 98/73 so it is fluctuating still.
Also to add, my doctor has done other tests like on my urine and I am not sure exactly which one and what the results exactly are. I have not had the follow-up since my 24-hour urine. I do know I am not going enough in 24 hours. I also note one thing about myself that has driven me crazy for the longest time. I will sometimes have a puffy face and then some days my face will look normal to me. I am NOT on any steroids not even for my autoimmune arthritis- haven't been on them for that in over a year. My daughter loves to take pictures with her camera and I won't let her go near me on days my face looks puffy like that!
No not on anything for it other than the amiloride for now. I had such an awful day today. After I went to bed last night I got up this morning with an awful headache. Could not get it to go away until about an hour ago. So it took a good twelve hours. Funny I started eating some salty snacks about an hour or two before it finally relented but not sure if that is just pure coincidence. I did eat and everything during the day. I tried sleeping it off for awhile too but no dice. I am just thankful it is gone. In the morning though I had pretty bad shortness of breath on the way to my husband's doctor's appointment. I felt really awful. I was supposed to get blood drawn today to check my metabolic panel but had issues with the lab so I had to go home without getting it done. I had to call the doctor about it and will probably hear back from him tomorrow well hopefully I will. I need to tell him how bad today was or maybe I should wait until I see him again. I have no idea. My husband asked me in the morning if I wanted him to take me to the emergency room but i told him they just wouldn't figure it out anyway. Every time I go in complaining of something to someone (ER or doctor) no one gets it. The only one who seems to understand so far is my new specialist or at least he makes me feel like he understands.
aside from having the low aldosterone and low renin levels recently the only hormones I remember having had done were back last summer 2009 and as far as I was told they were all normal. (basically they were a panel of the girl hormones) I may have had more done while in the hospital back in Jan because I did have a hysterectomy back then but the only concern that was addressed was the low potassium which actually kept me in the hospital two days longer than I was supposed to be in. Surgery was also held off for a few hours because I had to have IV potassium before they would do the surgery.
I have been having these days and symptoms for at least a year that I can remember vividly and do remember having them before that but my memory is not so good anymore either.
I don't even know why someone wouldn't manage their fluids well as to what the cause would be. Quite confused most days.
I have a friend who has the same issue - her K tanks. They do not know why either. And they have never found out why. She just goes low and passes out. They thought it was a rare interaction with a medication she was on, topamax, but even off it, it kept happening. Now she is better - but she has no idea why it started or why it ended. She has thyroid issues too (she is my tumor twin).
I know one other person too, but I don't think she has thyroid issues.
Have you thought about doing a daily journal to track when it happens?
Well I actually have a little health journal I try and keep up with daily. It tracks what meds I have taken that day and whether I took them during the AM or PM as well as where I have pain/discomfort. It also keeps track of symptoms per body area as well as a section for tracking BP and weight. I try to keep up with it daily and have been doing well with it for the last almost two weeks. I kept one for awhile all during last year and have them stashed somewhere but there is no telling where. I know when it started to get worse I stopped journaling a lot of it because I was just too worn down or sick.
Today has been an unusual day my left arm has a pretty bad tremor. None of the medications I am on now cause tremors as far as I have read. I am going to re-check though to be sure on that. About it being a medication interaction I, my surgeon as well as my PCP all suspected that might be an issue and all of us were scratching our heads going over and over everything trying to be sure we hadn't missed some interaction somewhere but none of us can find one. My new specialist does not seem to think there is an interaction either causing the K issue. Very interesting thing to have happen. I wonder if mine will just disappear too.
Still waiting to get my new blood work done. I am wondering where things stand at this point. When I have better days I feel like it is all behind me and it won't happen again but usually it happens again anyway.
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