This is a medical information site regarding a rare endocrinology conditon, known as hypoparathyroidism. Our staff is here to help support and give as much knowledge as we know or direct to a hospital, clinic or a favorite doctor who we feel has done a great deal of care in listening, growing with this rare condition. Few doctors have seen this condition / disease so few really know anything about it. Our purpose is to learn more as we go through this and to support and to teach as many as we can with humour , hugs and laughter now and than.
Feb 20,2009 Month 5
This Has been a real challenge a challenege I did not expect at all. I have talked to others on Forteo and they did not go on for too long with the bone pain, while I have in fact gone on with the bone pain and it at times is so painful I have not slept in a few days and cried or walked for hours.
My calcium dropped when I was given two medication nueral blockers to help in the pain and the level of my calcium dropped rapidly because that was a side effect of that. I dropped and was put into the ER with Bracycardia and was NOT doing well on IV Calcium Carbonate /magnesium fusions again. My...
Month 4 of Forteo
so far this has been a journey. I have maintained a rollercoaster of a ride at times but not near as badly as i have been through in the last ten years. the lowest i have gone in the last 4 months was a 7.9 total calcium level. or a 1.14 ionized. the highest so far in a total calcium 9.13. normal setting is 8.7-10.5 on a lab.I am thrilled. Standing appt every 2x wks and will remain this way steady for 2 years or until something more compatible comes our way in studies.
Columbia University is doing trials december 2008-2010 on I-86 and I have heard that [ rumours ] this might be more...
Month 3 of Forteo
I am going into the 3rd month.
Golly I am announcing this as if giving birth to a baby *
the pain is intense , bone pain is intense. I have been biting my pillow. I have gone through in my head of how a bone cancer patient must feel [ not even getting close to their pain ] in this scenario, because DAMN this hurts like HELL!
I have been in so much pain I have removed about one hundred news letters off my gmail acct so I do not have to look at anything else to think about.
sound crazy?
it is!
Lands end, my catalog store for winter wear had to remove me from their christmas customer list...
Month 2 of Forteo
Well I am now on Month 2 of Forteo.
there are a few side effects.
BUT, get this, for the first time EVER, my calcium runs 8.5 - 9.4. The normal calcium runs 8.7 - 10.5 . This is the most normal I have been in years. I have ran so low in so long my brain has had a bit of an adjustment as my body has too.
The side effects that I have been having are headaches and some bone pain. I will discuss this with my Dr. when I see him On Tuesday. I was getting blood work every other day but alas my veins were not holding out SO we are going every other Tuesday because of this. I see my doctor...
