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Old 11-19-2007, 03:54 AM   #1
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elphers HB User
Running out of options!

I have osteoporosis, mainly in my spine. My T score was -2.8.
I was on Actonel for 15 months and I went from osteopenia to osteoporosis. I also tried Boniva. Both of these gave me terrible back pain (joint pain)and I can't tolerate them!
This past August, my Endo Dr. had me try the Combipatch, an HRT patch. After using it for 3 months, I had cramping and spotting, and I am menopausal. So she said to discontinue that.
My question is-- any suggestions as to my next step as to what to take for my osteoporosis in my spine?
My Dad who died in June from complications during his 3rd kyphoplasty surgery (he had pulmonary fibrosis and had to be intibated on the table), had osteoporosis in his spine also. I saw the pain that he was in and hopefully won't have to go through that.
My other dilemma is I feel like I deserted my Mother. I stay Sat. nights with her because she has Parkinson's and needs help out of bed quite a few times during the night. I have done this for a year now, actually I lived there last year at this time for a month and a half. My Endo Dr. said that helping her, by pulling her out of bed and off the couch, which she goes to every night, is NOT good for my spine and I could easily have a compression fracture, like my Dad. So I told her that I can't stay on the weekends anymore. She has a caregiver 6 of the other nights, and will have to ask her to stay the 7th. I feel guilty, but am I wrong, worrying about having a fracture? I have a lot of other things wrong with me...............
I just started Synthroid for Hashimotos thyroiditis. I thought that I read somewhere that this drug is not good if you have osteoporosis. Has anyone else heard of this?
Thanks for any help! I don't see my Endo until Feb. so I am without any drug for my osteoporosis until then and really don't know where to turn!

 
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Old 11-19-2007, 10:16 AM   #2
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Re: Running out of options!

Hi Elphers

I am fairly new to the board but I have found a ton of information here from very knowledgeable posters... you will too!! I have OP with moderate high risk of fractures. First of all, do not feel you have to take Actonel etc if it does not agree with you and is not working... I decided against it and have started taking Strontium citrate(supplement) and most people have no side effects from it.. plus calcium plus magnesium plus Vitamin D. Try and gather and research as much info as possible. I too have OP members in my family and like you DO NOT want to face fractures... they are horrible and take sooo long to get over. You must remember to take care of yourself... no one is doing it for you. You did all you could for your Mom .. Bless Her! and now that you are not up to it..... don't feel guilty but explain your condition ... and spend quality time with her and let the workers do what you have done for the past year.
Some bone robbers: sugar, salt, caffeine, red meats by that I mean excess amounts daily and soft drinks. Eat lots of fruits/veggies and get exercise. Hope you will hear from the other faithful posters. Takecare, Canna

 
Old 11-19-2007, 11:32 AM   #3
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Re: Running out of options!

Elphers-Hi! Well I have the same combo that you have-hashimoto's thyroiditis and osteoporosis.I am post meno ,55 yrs. old and my osteo numbers are not good. I have been on forteo for the past year.
My hashimoto's was diagnosed about a year ago as well. To my understanding synthroid is ok as long as your dose is right and you do not go into hyperthyroid because of too high a dose.I have read that researchers have done studies on people who have been on synthroid for years and found no difference in bone loss between them and those not on synthroid. Sorry I do not have further test infor for you , but you could research this and see what you find. Getting the dose right should in my opinion be done in small steps, if your advance is too large then you risk hyper and hyper can result in bone loss. The way that they offer the thyroid pillls is in small increments for example 75, 88, 100mcg etc.When 75 was not adequate for me, my endo at that time advanced me to 100. I went hyperthyroid and caught it at 3 weeks, and went back to 88. The reason the 75 was not enough was that I had started on iron supplements because of low ferritin and even though I took the iron 8hrs. away from the synthroid it still diminished the synthroid's effect.When I quit the iron, I had to go back to 75. So, you must watch what else you are taking to see if it interferes. Also because the antibodies slowly destroy the thyroid, your thyroid functioning will be changing as time goes by-and everyone's thyroid will probably go at a different rate . So it is a bit of a moving target that we are treating.A good thing to do is to buy the Book Thyroid for Dummies. It is unlikely that you will read it cover to cover, but it does have very good information that you can refer to including drug interaction and what to do about it. Be sure to get your thyroid checked(blood tests) at least 3-4 times in the first year so you can see how you are doing.You should really like your endo or doc because you are going to need to deal with this person on a very regular basis. The other reason that I like the Dummies book is that it is good at telling you about hypo /hyper symptoms .I wish I had read it when diagnosed. I didn't get it right away but about 6 months after diagnosis.
Sorry to hear about all the challenges you and your family are now facing.You are so right- you should NOT lift, your mother. You will just need to reassure her that it doesn't mean you won't be there for her as you were before. She should be able to understand -I hope.
About your drug treatment. If it's ok, I would ask how old you are and how long ago did you go through meno? In terms of treatment options what are you now considering. I decided on forteo. It was not an easy decision to make at all. But, I didn't see a strong enough alternative for me spine -3.4 and hips were -2.7. After forteo , a person needs to do something to lock in the gains or bone changes even if no gains show on dexa. My doctor has told me there can be architectural changes to the bone that do not show on the dexa.Later, after the 24 months treatment, I may need to use a bisphosphonate or perhaps if there is something else available I will do something else. So, I am not suggesting forteo for you just saying it was what I decided on.

 
Old 11-19-2007, 01:46 PM   #4
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Re: Running out of options!

Hi Elpheres, Sorry to hear about your Dad. As guilty as you feel about your Mom, she knows you are doing the best you can. As long as she has good caregivers, she is being taken care of.

Osteoblast gave you good advice about the thyroid meds. i have Graves disease which was treated wsith RAI.. in other words other words..my thyroid does not function any longer on its own. I am on total thyroid replacement,137mcg daily. I have test done every 6 months and for me normal is a a below 1 tsh and upper middlerange FT4. Finding the right does is the tricky part. and it will take time to find the best one for you. Don't get discouraged if its changing every few months or so for a while.

Untill you see the endo you can start an exercise program of weight bearing walking and weight training. Both will be good for your bones and walking is great for the head. If your diet isn't grat try adding more calcium from both dairy and non dairy sources as well as lots of fruits and veggie like Canna suggested.

its good to see you back its been a while since you've posted. take care...phyllis

 
Old 11-21-2007, 04:54 AM   #5
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Re: Running out of options!

Hi all, Thanks for the replies! I really appreciated all of your info!
I do have another question-- I have been having excessive back pain for the past 4 days now! Does osteoporosis actually cause back pain?
I have a gyno appointment on Monday for my spotting, but I still think that it was from the HRT patch, which I did stop last Thursday.(the patch). I am 51 and in menopause.
I will have to ask my Endo in Feb. about the Forteo. Is that shots?
Unfortunately, my Mother isn't excepting my not staying on Sat. nights well at all. I know that she is in DEEP depression from my Dad dying, but she will be lost without me if I get a compression fracture. She still wants me to stay and she said that she will try to sleep in her lift chair. I really don't see that happening......... I am actually not cooking Thanksgiving dinner tomorrow as planned because my back hurts that bad! My husband said that we can go out to eat. Still worried about my back pain. I guess I should mention that also to my gyno on Monday, but it probably isn't female related.
Thanks again!

 
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