I finally saw my endocrinologist after waiting 2 ½ painful months to “hear” the results of tests that I already knew were normal because the results came in months ago. (He said my case wasn’t urgent because I didn’t have a tumor - but still apologized for not being able to see me sooner) I am feeling a bit depressed and could use any comments/opinions/suggestions in this latest “development”. I’m leaving a lot of historic detail out – but hopefully I’ve given enough to explain the current visit.
All the latest tests have come back normal – these include but are not limited to tests of my parathyroid, GI absorption, 24-hour urine, active vitamin D creation etc. The only new test that was not normal was a bone turnover markers test or “collagen cross links test” (deemed experimental and uncovered by my insurance), which according to my doctor showed me 2-3 times higher rate than normal- “941” the “highest he’s ever seen since giving the test”. Based on the bone turnover rate, my fractures and bone density of -3.6 in my spine (despite the fact that he still has no idea why this is happening) he wants me to start a bisphosphate immediately – he prescribed actonel but also mentioned fosomax and boniva as options. He was glad I stopped breastfeeding only because he didn’t know what effect it would have on my milk. He also wants me to continue taking the collagen cross links test every 3-4 weeks to recheck my progress and said I need to fight my insurance (without his help because he would have to charge me extra for that).
I asked if we could wait and see if I improve just by stopping breastfeeding, continuing better calcium supplementation and exercise - he said that there is no way this high a rate of turnover could be explained by breastfeeding and pregnancy – he thinks it must be something genetic even though no one in my family has had this problem.
I asked if my calcitonin could be low (since I read a case study where rats whose calcitonin were taken away experienced spinal fractures during pregnancy while those with normal levels did not) – he said that there is no reason to think I have low calcitonin and they would only check if I had a parathyroid tumor and even then they still have no idea what normal even is to make a judgment. He said taking the calcitonin would not be strong enough medication.
I asked about forteo based on what I’ve been reading from this forum and he said that it was an “expensive” “troublesome” synthetic parathyroid hormone that he wouldn’t recommend unless the bisphosphates didn’t help.
I told him I was very concerned about taking medication without clear understanding of what it’s side effects will be now and more than ten years down the line – because I am still young and hope to have more children. He didn’t give me any information or feedback other than to say he wouldn’t tell me to take the medication unless he had a good reason. I guess he’s not used to having patients who actually want to make an educated decision. He just said this was a “speed bump” in my life that I would “get over” if I just “take the time to go over it slowly” . . .
I left the appointment saying that I would like to wait for a second opinion before starting any medication. He said that was fine and I didn’t need his referral. I feel like the appointment was a complete waste of time. He wouldn’t even recommend me to physical therapy – said my primary care doctor had to do that. I just found a new primary care physician who I hope will start taking an active role in managing this issue since the specialists don’t seem to care about my quality of life.
Am I completely in denial when I cling to the idea that I could get better without medication? Am I naïve to think this could just be a rare pregnancy + breastfeeding + bad diet + inadequate exercise + possible hormone deficiency they just can’t diagnose??? Am I being too paranoid for not wanting to risk taking bisphosphates or other medications that have such serious side effects and so little studies in people my age with hopes of future children?? Does anyone have better information or first hand experiences to help me make an educated decision?
I hate the idea of just treating the symptom instead of dealing with the cause – but all the doctors are saying that they may never find a reason.
On a personal note, my mother-in-law called today to tell me they wouldn’t be upset if I couldn’t have any more children that I should just take care of myself – I just started crying because it sounded so cold and I’m not ready to give up all the plans I had for my life. I need to believe I can fight this and get my life back on track.
I’m starting to get this horrible feeling that everyone thinks I’m completely crazy to even think I can gain my bone strength back and lift my daughter without pain without medication - let alone have more kids.
I know many of you have already gone through this same issue - I'm so grateful for your feedback and stories.