...and yes, the hypertension is gone, the potassium is pretty good most times and I am physically stronger. However, this past year has been quite challenging health-wise.
After moving to the southwest from the east coast to "heal" more from surgery, instead of continuing the healing process, I've ended up becoming sick several times. Perhaps the altitude, perhaps the dryness, but I've had four sinus infections, bronchitis and a case of pneumonia in early October after moving into my new house downtown. And now I find my sodium levels are off, electrolytes mixed with estrogen imbalance + Hypoglycemia = daunting and scary at times.
When I moved from my first house rental in August 2011, it was discovered that there was black mold in the bathroom, which can be deadly for a person with an auto-immune condition. It was there the entire six months I lived there, which is probably why I had chronic sinus infections. I had no idea black mold could survive in a desert. But it is pretty prevalent here.
The good news is I FINALLY found the right doctor, an environmental family practitioner who specializes in auto-immune, adrenal and rare diseases, like Conn's Syndrome. Her name is Dr. Erica Elliott, and she practices in Santa Fe, NM. I went to see her for the first time in September, and she understood exactly what I've been through with Conn's and hypoglycemia and hormone imbalance. She also has a lot of experience with the effects of toxins in the home and is helping me get through my symptoms. Thankfully, she is aware that living with one adrenal gland is a difficult journey at times.
As far as the electrolyte/hormone/hypoglycemia issues, Dr. Elliott is treating me with supplements and has put me on a strict diet...no yeast, gluten or sugar. She's informed me alcohol can be deadly to me. I only drink wine, and after a glass, maybe two at the most, I've noticed sometimes I crash and am majorly out of sorts, especially if I'm dehydrated or don't eat. I had no idea how bad hypoglycemia can affect me and had a horrible experience at the end of October with just one glass of wine.
So, my life is changing still, even after all this time. I am learning what works, what doesn't. Those who have had the surgery to remove the tumor and are thriving make me happy for them. But so many have contacted me and told me they too are struggling with other problems. Your surgeon will say you are cured, but they don't know what's in store after the adrenal is gone. Little information available here. It's seems we are learning as we go along. I thank God I found a smart doctor who researches.
Dealing with one adrenal is unknown territory, but achieving balance in my body, mind and soul is my mission. I think Dr. Elliott will get me there, but know I still have a bit more healing to do.
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7 comments:
As a patient 5 yrs post adrenalectomy my BP and serum K levels are fine but the rest of me is sick. After surgery Lyme took over and I have been fighting ever since. I agree life with one adrenal changes things but you can't get a conventional doctor to admit that, including the one familiar with Conn's on Yahoo Groups.
Integrative medicine saved my life, appropriate diet, supplements, herbs etc prescibed specifically for me; a doctor who listens and cares, a very difficult thing to find.
Glad you could find someone to help you, it is a difficult task.
Anonymous,
I am sorry that you are now dealing with Lymes on top of such a difficult disease like Conn's. The thing is, there is no research being done on us...doctors just regurgitate medical texts and unless they really take an interest, they will say you are curing, bye bye.
I wish you luck and positive energy in your healing process.
Carole
I’m impressed, I must say. Really rarely do I encounter a blog that’s both educative and entertaining, and let me tell you, you have hit the nail on the head. Your idea is outstanding; the issue is something that not enough people are speaking intelligently about. I am very happy that I stumbled across this in my search for something relating to this.
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Hi there, my husband was also diagnosed with conn's over 2 years ago. He had the adrenalectomy 2 years ago this March. Unfortunately, his blood pressure is high still and potassium is very low. We are seeing an nephrologist currently who is changing his blood pressure medication (again). He is asking for another CT scan of the remaining adrenal gland. I'm concerned because our beliefs were that the high BP would be gone after surgery and that was not the case. Any suggestions/ideas of what we need to be doing?
I was sick for 5 years with bp 200/120 in icu, taking lots of meds, fatigue, migraines, anxiety-seizure like symptoms-mental fog, etc. In April 2011 I was diagnosed with a tumor in left adrenal gland-hyperaldosteronism-surgery-removed adrenal gland!! I am so frustrated because I'm having all these problems and the endocrinologist says I'm cured and won't help! I have developed hypothyroidism, have celiac disease, fatigue, headaches, now hypoglycemia, hypertension again, fluid retention, trouble urinating, etc. I still have anxiety, just had two lumps removed from my right breast, not cancer but not normal so high risk for breast cancer!! Thank you for this Blog-I only wish I lived in Santa Fe so I could go to your doctor but living in Idaho can't afford to make the trip!! I'm a very outgoing person, usually, and sometimes I just cry wishing someone would listen to me and tell me I should be all better!!! Any ideas or help would be greatly appreciated. At least thanks for listening!!!
Hollie,
I am so sorry to hear this. Sadly, I am not surprised, both with your new health issues as well as the reaction of your endocrinologist.
Email me any time at clangrall@gmail.com
I have been through many of your symptoms. We need to stick together, as I believe in my heart, many more have this disease than they realize. Drs. ARE NOT testing for it enough.
Carole
2 half years after surgery. i was told i was cured,but was still felling tired and drained as if i still had conns. i was told by my doc it was all in my head treated with pills prozac . then bingo they found i have to much iron in my blood, i have been referred to haematology on 5 november 2012. every person with conns needs to understand that we have all been there and not to worry. lots of luck to us all.from steve in london.
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