All my test results and experiences of the last 6 months read like Dr. B's pituitary/hypothalmus axis information in his guidelines.
My pituitary is shot and all 3 hormones it produces are extremely low.
Thyroid is no longer functioning at all.
Adrenal numbers are low and 1 pt. above Addison's disease.
Immune system Natural Killers extremely low. B and T's are low.
Platelets low.
Just waiting for GP to consult with endocrinologist on medication dosing.
So here is where it get's weird. My son has Schmidts syndrome. Total thyroid and adrenal failure at age 13.
Needless to say my head is spinning. I am waiting to hear back from his endocrinologist now. I need to know if my son was tested for Lyme? I will push for WB, as well as a CD57.
Problem is he is at the world famous Children's hospital in Steere's city.
We must also have some genetic predisposition for this type of endocrine issues. I am feeling very " chicken or egg"?
Once again I have more questions than answers.
God bless,
Paul
Posted by seibertneurolyme (Member # 6416) on :
You probably should double check, but I do not think the low platelets is from the pituitary issue. I could be wrong, but I think something else like babesia maybe or another infection is more likely to be causing the low platelets.
Bea Seibert
Posted by OtterJ (Member # 30701) on :
prconn, how was your child diagnosed? Does your son's hospital run complex autoantibody tests to diagnose Schmidts?
I have been debating whether or not I have histiocytosis due to the fact that prior to lyme, I had problems with infections and suspect that I may have a defect in the natural killer cells and or perforin. Without these, the body produces high amounts of inflammation.
I am looking for a lab that could run an anti-pituitary autoantibody test, but have not found any to rule out lymphocytic hypophysistis which is inflammation in the pituitary.
Paul, is your hormone failure primary or secondary? For instance, does your adrenal glands work, but your pituitary not function and cannot stimulate the adrenals?
Has your doctor done a full hormone panel which would include ACTH which is produced by the pituitary to stimulate the adrenals.
My pituitary gland continues to fail due to the lyme, but I don't think that is the full picture here. PM me if you want to chat privately.
[ 11-06-2013, 03:49 AM: Message edited by: Robin123 ]
Posted by prconn (Member # 7113) on :
My son was diagnosed in acute adrenal failure at 13. We though he was being a lazy teenager.
He also had this amazing tan that alerted Drs. in the ER at Childrens Boston that something was up with his adrenals.
I also have had an amazing tan my entire life 48yrs. People have always commented on how dark my skin is for being 100% of Irish decent. In hindsight how could I be this stupid to sit on this for so long. I was told it was not genetic.
He was in ICU within 15 minutes of arriving in the ER. He had lost 30 lbs in just 6 months. We really thought he was starting puberty and loosing his baby fat.
He has always been a bit beefy and solid as a rock. in the end his puberty was delayed because of the entire fiasco.
He is now 6'4" 19 and beefy and solid again. Based on his experience of bouncing back so well. Once medicated gives me great hope for my full recovery.
I do have have a low ACTH #. Just Friday had the cosyntropin stim test. My adrenal baseline was 11 and jumped to 18 after injection.
My understanding is that a baseline below 10 is Addisons.
All 3 of the pituitary numbers are very low. LH,FSH and MSH(melanin) aka the great tan hormone.
My thyroid is just not providing any number at all.
Having been researching this Hypopituitism.I have found forums out there were people diagnosed with Hypopituitism should be looking into getting the cd57 immune test. Turns out the many also have lousy Natural killers numbers.
Then when Western blots are run they are positive for Lyme. This leads to my total confusion of what came first.
Are we just the canaries that someone needs to be looking at closer? I have had terrible fatigue since graduating H.School.
Looking back I know of at least 4 instances throughout my life that I was in adrenal crisis.
I was told I had Kidney stones they could never find. Within 1 hour of the stim test Friday my left Kidney was raging. Just God awful pain for the weekend.
Today it feels better but still tender. All 3 of the prior "kidney stones" were on my left side as well. My right was tender but nothing compared to the agony of the left.
Just not sure where to turn now. I am still waiting to hear from My son's endocrinologist.He holds clinic tomorrow so I should be hearing from him then.
I also did my first coffee enema today. HEHE I will try anything at this point to get things moving.
So still hanging off a cliff here. HAHA
God bless.
Posted by Robin123 (Member # 9197) on :
If you find the right supplements for you, your health can improve.
Examples for me - I tested low in thyroid - low T3 - went on Armour thyroid and I feel more connected to the world - it boosted my metabolism.
I had high prolactin - a pituitary hormone. My anti-inflammatory treatments are reducing the high prolactin level, which has dropped from a high of 220 (it's supposed to be at 20) to 150 to 115 to 78!
Anti-inflams include mangosteen juice, noni juice, grapeseed extract capsules, turmeric powder in capsules.
Posted by sk8ter (Member # 8671) on :
please check Congenital Adrenal Hyperplasia...there is a gene test for it at Athena Labs....there is late onset and it can hide tell later or come out at puberty like your son... CARESFOUNDATION.org is the national site.....