Thyroid&Adrenal failures following head injury
I am new to this board and have a few questions.
6 years ago I had a horse hit me on top the head as I was bent down picking up a bale of hay. Had severe headache and neck pain for 10 days and thought I was ok.
One month later started having severe chest pain, migraines,muscle weakness and pain, shortness of breath, tremors upon any exertion, increased urination upon being upright very long, passed out(first time in my life) after going up 1 flight of stairs. Had cardiac workup, only MVP showed up. Local doctor told me i was "menopausal".
One year later after continuing problems was diagnosed low thyroid and then another 18months later diagnoised with adrenal failure(Addison's). I continue to get worse with the exercise intolerance and weakness, left kidney area pain when upright and increased thist and urination with flushing of cheeks and chest. In March 2011 diagnosed with POTS (postural orthostatic tachycardia syndrome). Using compression hose and increasing salt and water which has helped some.
The last 18mo I have woke up every morning with bright red cheeks and chest and now am keeping it during the day.
I am seriously starting to think this may have a connection to the head injury.
Brain MRI's pituitary looks normal. There is about 5 areas of high intensity in the grey matter (neurologist thinks migraines?) My ACTH at diagnoisis of Addison's was low (16) when it should have been high. My pituitary was not asking for more cortisol when my base reading at the ACTH stim test was 3.99 (anything under 10 is too low) and only stimmed to 5.7 in one hour.
My TSH is very suppressed less than 0.01, but my free t-3 and free t-4 are in range. I take nature-thyroid for low thyroid. Serum Cortisol was low at 2.1 at 1pm (after taking 30mg cortisol that morning), My prolactin is slightly elevated. Renin and aldosterone are both low as is DHEA, potassium, rbc magnesium, urine metanepherine, creatinine, specific gravity,potassium all low. Urine histamine is high.
Is there any specific test to indicate whether the failures I have are related to the head injury?
I have had autoimmune involvment in the past with 20 years ago - a three year battle with mixed connective tissue disease.(current ANA is neg) and I do have high anti thyroid antibodies. I know a steriod shot of celestone and kenalog will dramatically IMPROVE my problems for a while, then I go back to the way I was. I also have had 20 years of unexplained hive like swellings that can take 2-3 days to go away. I take zyrtec and benadryl every day and most of the time are controlled.
All the doctors I see get all worked up about the suppressed TSH and low ACTH and try and lower my meds and I get VERY sick. When I asked one Dr why would my cortisol be so low at 1pm when I had taken 30mg of cortisol that morning, and he said "MY labs do not reflect my medication, the proof I am on too much cortisol is the suppressed ACTH". Gee I guess he did not take into account the fact my ACTH was low AT DIAGNOSIS of Adrenal failure when I was not on any cortisol.
I am so tired of doctors that refuse to take the time to look at your records and are not interested in listening to their patients. If they can't run a lab and have a simple answer, your case is too complicated and you get NO help. I have found no one to look at the big picture.
Where do I find a VERY smart doctor that can handle pituitary, multiple endocrine failures and autoimmune issues at the same time? I would be willing to travel if necessary. I live in Indiana.