As covered in my profile, I received my diagnosis of osteoporosis when I was only 18 years old during my evaluation after admitting myself for anorexia.
I'll be 22 this month, and even with calcium citrate supplements, a normal diet, producing estrogen again (since periods stopped when I was anorexic), and an active lifestyle, my DEXA scan from this summer showed almost no improvement.
I realize this is rare for my age, but I am hoping to find others for support.
I am scared for my appointment with an endocrinologist because I don't know what to expect. I'm scared that I'll have side effects from the medication (whichever he or she prescribes me). I'm scared that this will severely affect me when I decide to have children in the future. I'm scared that I'll never have a normal bone density in my spine ever again.
I'm not just scared, I'm terrified. :o(
I'm usually extremely optimistic, but it's hard to be so with this when I'm looking into the unknown.
Any input or support would be incredibly appreciated. I look forward to becoming active in this group and making friends.
-Erin
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Young, brittle, and scared.
- By ErinC
- Posted November 16, 2008 at 9:20 pm · 11 replies
- In Diseases and health conditions that can cause bone loss
- Shared with the public
Explore topics in this discussion:
Hysterectomy Fractures Osteopenia Anxiety Pain Menopause Anorexia Osteoporosis Depression
11 replies
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- Newest first
- By jac
- Posted November 22, 2008 at 5:11 pm
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Thank-you Erin, my GP did say that there are 3 stages of osteoporosis and I was 3rd stage, first stage being have signs of it. I am on so much medication I am getting really worried about taking so much, I do have to be careful anyway as I suffer side affects to medications that say no side affects. I don't think my GP would allow me to have an appointment with an endocrinologist, I've had to fight for the last 19years or so to get some one to listen to me and not judge me on my size alone.
Thank-you again and good luck to you also
- By ErinC
- Posted November 21, 2008 at 2:58 pm
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jac: Wow.. Uhm, I don't really know how to respond. I'd be in shock myself!
I'll leave it up to the other ladies to put some input on this, as I am very new to this also.
If you had a DEXA scan, you should try and get a copy of your results, or ask your doctor to share the information with you. After all, this is YOUR health!
The results will be in T-Scores. A T-score compares your bone density to the optimal peak bone density for your gender. It is reported as number of standard deviations below the average. A T-score of greater than minus-1 is considered normal. A T-score of minus-1 to minus-2.5 is considered osteopenia, and a risk for developing osteoporosis. A T-score of less than minus-2.5 is diagnostic of osteoporosis.
I would also recommend getting an appointment with an endocrinologist.. He or she will be able to evaluate you better and should give you more information.
Good luck, and keep us updated.
- By ErinC
- Posted November 21, 2008 at 2:52 pm
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KG: The World Health Organization seems a little off.. My scores place me under the osteoporosis diagnosis. I can't come up with a good analogy right now, but you see where I'm coming from, right?
Let me think.. It's like saying you can't read until you've read a novel. You can have the ability to read without reading an entire novel. Just as I can have osteoporosis without having a fracture [yet]. I've heard that most of the time people don't know they have osteoporosis UNTIL they have a fracture. I mean, really, DEXA scans aren't as mandatory as mammograms.
I'm not saying you're wrong, please don't think I am arguing with you.. I'm just trying to make sense of it.
I am planning on having a thorough examination with blood tests and all. I have an appointment on 12/12 with Johns Hopkins, as I trust their medical advice more than most doctors out there. I have a lot I need to discuss with them.. Including ways to avoid medication but still rebuilding my bones because I'm scared to death of the side effects. I also need to consider my thyroid condition.
Thank you. I appreciate your advice.
- By jac
- Posted November 21, 2008 at 2:44 pm
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Hi everyone I'm new to this site and very confused......
Your all using big names,scores and things I haven't got a clue about. I go to the hospital every month usually to see the pain management specialist, and go see the Gastro specialist about my consent bowel problems. Last month he asked my GP to send me for a bone scan, I went and then a week later my GP phoned me at home and asked me to go see her. She wouldn't tell me anything until I went. I walked into her room and she just said that I was lucky to get an appointment so quick for the scan and that I had osteoporosis and gave me a prescription for Calcichew-D3 Forte and Alendronic Acid 70mg to be taken once a week. Then she got up opened the door and said not to worry i'll be fine. I left in total shock.
- By KG
- Posted November 21, 2008 at 8:05 am
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Erin, I'd think twice about going on any medication. They don't know that it can be affective in pre-menopausal women who didn't get low bone density from steriod use. In fact, the World Health Organization says you can't classify a pre-menopausal woman with osteoporosis until they have had a fracture.
My suggestion would be to have every blood test possible (many here can give you a list or I can) to test all the indicators of bone health and growth. You may find a better and more proven approach for pre-menopausal women than taking drugs which we have no idea what affect they will have or if they'll even help.
- By ErinC
- Posted November 20, 2008 at 3:06 pm
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Rubylizard: Personally, I would get advice from a nutritionist. Perhaps a therapist, also, to get to the bottom of the anxiety issues. Once you are able to control the anxiety, it should be easier to eat. At least, one would think.
In my case, I battled with mild depression and severe self-esteem issues.. I believe it also had a lot to do with a "control" issue.. Like, I couldn't control the chaos in my life, but I had control over my eating. It's not that I didn't want to eat, it was that I was scared to in fear that I would feel out-of-control and gain a tremendous amount of weight. I could literally write book on my experience, as I have several journals where I documented everything.. But that's not the issue here, so I'll refrain from doing so.. Even though I have a feeling this will be fairly lengthy.
It took catching a glance of myself in a mirror from the corner of my eye before it finally hit me. I was 86 pounds and nothing but a walking skeleton.. Skin shrink-wrapping my bones. I walked up to the mirror and stared at myself like a stranger. I wasn't me. My distorted view of my body faded and I saw myself in real life for the first time in a year.
I decided to get help, and after a few evaluations, I was admitted to Sheppard Pratt in Towson, MD. I was inpatient for much longer than most of the girls (and few guys) due to my health complications (my liver was also affected, but is normal again). I was there for a day-long program for another two months after that, and I was set out on my own.
Basically, we all had meals together, and we were forced to eat. If we didn't eat, we were forced to drink supplements (cans of Ensure). I never gave any trouble and always did what I was expected, because I knew this was what I needed to get better.. Others didn't see it that way, and they suffered the consequences. I learned a lot from the groups, and even though it was the most difficult thing I have ever been through in my entire life.. It saved me. I wouldn't be alive today had I not taken action.
Although this doesn't apply to you, hopefully it helps in some way, shape, or form. Feel free to message me with any questions and I'll try my best to address them completely.
The therapy (Which I no longer participate in) definitely helped. Perhaps they can find an anxiety medication that can help calm you down so you are able to gain some weight and become healthy again. In the meantime, you may want to try to see if you are able to drink some of those Ensure shakes (usually in weight management / health aisles). It will supply you with the nutrition your body is begging for while you are searching for the answer to the anxiety.
I hope I have been of some help. Take care.
- By Rubylizard
- Posted November 20, 2008 at 1:22 pm
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erin... i'm not anorexic, but i have anxiety disorder and when i'm really anxious, i can't eat. i know this isn't exactly the same as what you went through with your eating disorder, but do you have any good advice on how to eat or what to do when the idea of eating makes you anxious?
this is why i have osteoprosis too...i'm too thin and i'm not having periods.
you give me hope that i can over come this since you were in a thinner place and somehow learned to eat more and are having normal hormone levels again.
- By LindaS
- Posted November 20, 2008 at 10:16 am
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Erin, I got osteoporosis when I was pregnant at the age of 31. I will be 50 in January. I have not gone thru menopause yet. After my initial bone loss of -3.9 in my spine, my body never lost more bone til now. I have pretty much been on miacalcin which is probably the safest but not the best working. Although I did actually increase my bone density with it. I didn't have any luck with the bisphosphonates. Hopefully the harm that was done has passed for you. I wish you the best of luck. Please take care of yourself especially during pregnancies.
- By ErinC
- Posted November 17, 2008 at 6:12 pm
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Kathleen: Thanks, I'll look into that.
Pam: Thank you for befriending me and for your supporting words. We'll find a way through this. I look forward to conversing with you more in the future. :o)
KG: I have not had any fractures yet. My scores are -2.6 in the spine, -1.7 in the femoral neck, and -1.5 in total hip. The only person I've seen for this is my PCP. I have called and left a message twice for the endocrinology office, but they don't seem to think Im important enough to respond back to.
- By KG
- Posted November 17, 2008 at 7:57 am
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Erin, have you had any fractures? What are your scores? What types of specialists have you seen?
- By huessysignoret
- Posted November 17, 2008 at 7:09 am
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Ah, you're the young lady I "lost" recently. I'm scared, too. I've never been anorexic, and I'm now 63, but I've been too thin for about 16 years. Osteoporosis has become today's boogey-man that doctors are using to scare the bejeesus out of women. How scared should we be? I just don't know. Since I react very badly to bisphosphanates (extreme pain) I plan to start a program of using biodential hormones (but I've had a hysterectomy -- you should be manufacturing those hormones already.) I've asked you to be my friend. I hope you'll accept, and read my profile, various discussions, et al. This Inspire group may help us all get through this together. For now, all I can say is: don't be so frightened, don't obsess, listen to women like you, don't accept everything your doctors say as gospel, and make sure you're able to make your own decisions about how to handle your condition! Good luck and God bless.
Pam
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