Hi. This is my first post and I am thankful for a forum such as this. I love my doctors (at Johns Hopkins) but I find that as brillant as they are they are very much "in the box" with conventional medicine. My primary doctors is an integrated physician and I have many stories first hand how combing the science of conventional medicine and the wisdom of alternative medicine really can be the answer for many patients.
I will make this short as possible. Seven years ago I was diagnosed with a thoracic herniation, which I am told only happens to about one in million patients. I "flip" houses, (buying distressed real estate, renovating for resale or investment) and I worked as hard or harder than any man on my crew. I has sustained an injury as a young child ( another story for another day) from an abusive " blunt force trauma" as my doctors term it to my back directly between my shoulder which I know know resulted in a fractured or cracked disc. Years later after all the heavy lifting I do the disc burst and I was reduced to lying in my den floor for six months begging God to come and take my home to be with my daddy, who I lost to ALS. He worked with me and his passing almost killed me too. Previous to that and after his death and after his death I struggled with several really hard life stressors, one being seven years of failed infertitlity treatments. This was the death of the family I wanted so badly. There were other stressors, but for now, suffice it to say by the time by disc burst I was already emotionally, physically and spiritually exhausted. I had been taking care of my father at home ( he was on a respirator for three years).
No doctor in my area knew what to do since they had never experienced a thoracic herniation but by the grace of God, and I mean that, I ended up at Wake Forest Baptist Hospital in North Carolina with a neurosurgeon who was able to decompress my spinal cord and clean up the disc, but unfortunately scar tissue grabbed some nerves and I felt like I was being electrocuted. I eventually had a rhizotomy with the hopes that I would be just left with some numbness on my right side, but I ended up with severe intercostial neuritis and radiculopathy of the deep roots of the spinal cord. Simply put, I felt like the entire trunk of my body had been douse with gasoline and set on fire. This lasted for seven years, but slowly, with the help of acupuncture, massage and infusions for inflammation my pain is slowly getting some better.
I said all that to get to the point of where I am now and that is in what my doctors call an Addisons crisis. My adrenals are almost gone, hardly functioning at all. I also have Hashimotos disease and my thyroid is all messed up. I am struggling with terrible fatique, depression, anxiety and a sense of being so overwhelmed that it is hard to even get dressed and out the door to get to a doctor's appointment, which is about all I get out. I have become very reclusive which is making my depression worse.
My doctors here put me on Cortef, 5 mg 4 X daily, but I have not improved. In fact I feel worse. I made an appointment at Johns Hopkins and they want to do the opposite of the protocol I have been under at home. They seem to feel that all the steroids I had to take for my back such as pain epidurals, steroids, and trigger point injections up and down my spine, coupled with "possible suicidal pain" as I was told people in my pain category were susceptible to. I am not suicidal, but there are some days that Heaven would be a relief. My doctors has planned a six month wean down off the Cortef to see if my adrenals will "kick back in" on their and they feel that it will take about a year and a half for my adrenals to heal.
Any help or suggestions that you can give with your own experience, which I believe people who have "walked in your shoes" are an invaluable blessing. Depression, anxiety, weight gain, lethargy and fatique...I need help with all of these. Any alternative treatments that may have helped would also be wonderful. I believe the body can heal itself if we help it and nature has provided many ways that do help.
Thanks for just reading and for any help you can offer.
Adrenals are... well... you just never know. I will tell you my experience comes from having cyclical pituitary Cushing's for at least 14 years, and then having my adrenals removed to stop it and now I I live on/for steroids.
The Hashimoto's shows you have some auto-immune disease - but in of itself, not related to the adrenals. But when you have one auto-immune disease, you tend to get more.
All the symptoms you are having is from the adrenals - so you are not crazy. You may or may not be able to get the adrenals to wake up. Did they do a stimulation test?
Weaning is very painful... even that 20mg can hurt a lot. I had to wean after pituitary surgery and would not be able to walk up stairs after dropping doses - it is akin to a heroin withdrawal.
It may be that your adrenals wake up, or that they will not. Your docs should run a stim test first to make sure that your adrenals are even functional.
There are other things that can help if you need them - the simplest being - salt!
I have also had friends go through what you did and develop Cushing's from the shots - so it can go both ways.
Frankly, being on replacements is ok. It makes for a different quality of life - but also, you are taking your replacements weird. Normally the body wants a burst in the morning, and less at night - and you are just dripping a bit all during the day... which is just bleah. I take 15mg in the morning, 5mg 2pm.
Thanks so much for your time to respond. So much you said is right on target. When I left Johns Hopkins they decided not to do a stim test until I was completely off the steroids because the tests would be skewed due to the Cortef. I am so on confused. I don't know which doctors to believe.
You are so right about the salt. I take 1/2 tsp. in the morning and 1/2 tsp. at night. Adrenals love salt. I have been doing some research into some alternative treatments and the one site that sounded credible was called Future Formulation by a Doctor James Wilson. He and the forum have some great ideas about adrenal recovery. I am always sceptical when a site sells products, but I know read two books about adrenal insufficiency and find that this Dr. Wilson seems to know what he is doing. He acknowledges that products such as Cortef as sometimes necessary and sometimes we can do things naturally to prod along these sluggish adrenals. Salt was one of his suggestions,
Have you tried any supplements such a pantothenic acid ( a B- Vit) or DHEA or licorice?
Having no adrenals, I need the dhea, and florinef, salt tablets (easier this way) as well as the steroid.
Is your blood pressure high or low? Do you crave the salt, or are you taking it because you read about it? My BP is low, I need it which is why I take it, not all of us with no adrenals need or take it.
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