Addison's problems, PLS HELP! Anyone else have advice too???
I am 33 yrs old and was diagnosed with Addison's at age 20. I have been on over 10 different medications, and for the past few years I have been on Cortef, which seemed to be working well for me. I have 2 children - one born 7/7/03, the other 10/02/04. Ever since their births my health seems to be on a zig-zag. Since the first birth, I have had massive potassium issues (with Addison's it tends to run high, mine was lower then the hospital staff had ever seen in a live person). In fact, I went into cardiac arrest. Since then I have been on a roller coaster of Cortef and Potassium. I get this weird leg pain before I am going into an Addisonian crisis - my endocrinologist does not even understand it. Thankfully I am usually able to avoid it because I have that sign. but now, I am having similar pains with the potassium, so I don't know which to take - my doctor said to take them both but I would think that kind of evens each other out, so what would be the point. Last time I had massive potassium problems I took so much to replensih that I ended up in ICU with an Addisonian crisis. The past weeks I have been experiencing much lightheaded-ness, but have not been able to check my blood pressure. I think that it is low when that happens but I can't be positive. I am also ALWAYS hot, like boiling, no fever or anything like that but I feel like I am going to pass out. I am also ALWAYS tired - and I mean ALWAYS. I could sleep 10 hours and 20 minutes later take a 2 hour nap. I never really feel refreshed from sleeping. And I have about a zero sex drive, which my husband does not appreciate Has anyone ever taken testosterone shots? It has been suggested to me but I am kind of wary.
ANY SUGGESTIONS/THOUGHTS/IDEAS WOULD BE GREATLY APPRECIATED, THANKS!
It sounds like you are really struggling. Hopefully folks who respond will be able to give you some brainstorming ideas. I am sick but undiagnosed myself but my husband has Addison's (pituitary failure). I have some thoughts and I'll throw them out there.
Have you had a recent full thyroid panel? I mean a TSH and FreeT4 amd Free T3 with Hashimoto's antibodies at the same time? Pregnancy can send your thyroid into a tailspin and already having Addison's will raise your risk of getting it in the first place.
When you were diagnosed with Addison's, did they determine if it was primary adrenal or pituitary in origin? Did you have adrenal antibodies checked and an ACTH level (not the stimulation test, just pure ACTH) measured as being high (indicating primary)? Or was your baseline ACTH level low indicating pituitary?
If you were suspected of having pituitary based Addison's or you aren't sure, you may want to consider a full pituitary hormone workup to be sure everything else is functioning okay. (growth hormone as IGF-1, LH/FSH/TSH/ACTH)
Have you ever had your aldosterone and renin levels checked? In classic Addison's, aldosterone is low and I don't know how that would fit with your now LOW potassium but most primary Addisonians have to take Florinef in addition to their cortef to control their fluid balance and electrolytes. That may be something to look into if you haven't already.
What kinds of doses of cortef do you take currently? Being on too much cortef can sometimes make potassium low and give you other weird symptoms as well. The average dose is 20mg/day but some require more or less individually. If you are on too much, it can make you feel addisonian when you are actually suffering steroid side effects (being hot, muscle weakness and pain, joint and nerve pain are things I know people describe on too much steroid among many other things)
One last question would be have you had your blood sugars checked recently, including a hemoglobin A1c level? Autoimmune Addisonians have a much higher chance of developing Type 1 diabetes. Sometimes, folks don't present with classic symptoms of drinking more and urinating more, but instead with nerve issues (numbness/pain) or extreme fatigue. Sometimes it is something as simple as blurry vision that gets someone diagnosed. High blood sugars would most definitely cause your potassium to be low, also. Being on the cortef raises the chances of having higher blood sugars and making previously hidden diabetes come out into the open. This is a relatively easy one to rule out.
I hope that your doctor is working hard to figure things out.. your body is definitely screaming at you that something isn't right. Don't hesitate to seek a second opinion in addition to working with your doctor. Quite a few of the different chat boards talk about specific endocrinologists they have had good luck with. Also keep in mind that if your disease was originally described as primary autoimmune Addison's that you could explore the other nonendocrine types of autoimmune disease. Once someone has one autoimmune issue, they often unfortunately can develop other types. Unlikely, but if the endocrine stuff comes back normal, it is something to consider.
As for the testosterone shots, that is typically not the way that women's testosterone levels are medically replenished-most doctors will use topical creams that are far safer. I would not recommend injections, though. First things first-figure out what is wrong...don't try to 'Band-Aid' the situation. It could be your drive is low because you are very sick and exhausted. If it is hormonal-then make sure you're treating the right issue. Thyroid, adrenal and pituitary problems can all make for low libido.
Take care and keep us posted on your progress,