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New Message on Pituitary Chat

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From: taranallan
Message 1 in Discussion

Hi everyone!!  I am somewhat new here.  Sorry if I repeat myself for those of 
you who know my history. This is my first time posting in this section of the 
group.  I have been learning so much!!!  Hysterectomy in January 2004 due to 
severe endometriosis. It was within a few days after that that the pituitary 
tumor started to show its ugly head (nausea & vomiting) Diagnosed with rathke's 
cleft cyst in April 2004.  Have had 2 trans-sphenoidals (June 2004, Aug 2005) & 
a craniotomy in Dec 2005.  Was on & off Cortef between June 2004 & January 
2006. To make a very long story shorter, diagnosed with hypothryoidism in 
January of last year & put on Synthroid.  Also thats when my growth hormone 
levels dropped.  Moved to SC from NC in January of last year.  Endo there tried 
to find an infusion center to do the arginine growth hormone stim test done.  
Tried for over a year & couldn't find a place to do it that would take my 
insurance.  IGF-1 would go anywhere from 85-119. In October of last year, 
started having severe dizzy spells, low bp, low heart rate, insomnia, etc.  
Symptoms would especially get bad in the afternoon & evening.  Ignored it until 
January.  Came close to blacking out several times. Been on Ambien for the 
insomnia since last year. Cardiologist was saying it was endocrine related.  
Endocrinologist said it was cardiology related. Increased my synthroid in Feb 
to 112 mcg. Went back & forth between the drs. Moved to VA.  Dizzy spells, etc 
continued to get worse. Same thing with the drs happened here even though blood 
work started to show something in March.  At 11am, cortisol was 4.6 back in 
March.  TSH was .79.   IGF-1 was 116.   Endo still said it was cardiology 
related. Started having severe headaches along with it all back in April.  Back 
on April 17th, had a really bad spell.  Severe dizzy spell that went into a 
severe migraine with nausea & vomiting. Became extremely lethargic.  Heart rate 
dropped down in the low 40's & bp shot up to 152/101.  Couldn't keep anything 
down.  Saw my pcm the next day who said I needed to get a 2nd opinion from 
another endo right away.  She said even though the 4.6 was in the "norm" range, 
for someone that has been through 3 surgeries on their pit, this was too low.  
She also noted the low growth hormone, the low normal TSH.  I contacted Dr. 
Ludlam out in Seattle that night.  He couldn't prescribe Cortef having not ever 
seen me before but highly recommended it & talked with my pcm the next day. 
Cardiologist also agreed with Dr. Ludlam on all of this.  He(cardio) & my pcm 
had no problem with putting me back on the Cortef at least until I can get out 
there to see him.  I am on 20mg in the morning daily. He also had my pcm do 
baselines for him.  8am Cortisol came back as 9.3 that were done on April 20th. 
TSH is .77 & growth hormone had dropped to 47.  I am flying out to see Dr. 
Ludlam at the end of this month.  He is planning on doing a cortsym test, 
pituitary panel & growth hormone stim test while I am out there.  Does this all 
sound like hypopit? Also since I had that bad episode in April, the insomnia is 
getting worse.  Ambien doesn't even seem to be helping much anymore.  I am now 
having horrible hot flashes/night sweats to the point where I am lucky if I can 
get 3-4 hours of sleep a night.  They tend to wake me up along with my husband 
around 3-4am.  Gyn dr increased my hrt, but its not helping.  I have also been 
getting extremely jittery & shakey over the last week or so. (I wondering if 
its from the lack of sleep) I am also getting bad pain in lower/middle back 
(especially on my left side near my kidney) & horrible leg cramps.  Ever since 
April 17th, it doesn't take much for me to overdo it. Is this from the low 
growth hormone?  Is this all related? Any info would be greatly appreciated.   
Thanks in advance..P.S. We also found out back in March that it looks like the 
pituitary cyst is back already.   Tara

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