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717272 tn?1277594380

Bone loss from TX part 2

Precautions for TX:
I had a bone scan that had shocking results in October, verging on osteoporosis. At 57 and only a few years past menopause I did not have enough risk factors to justify it and connected it to treatment (finished 9 mos. ago).  I figured it was caused by a year of chronic diarrhea from Boceprevir and interferon stopping what estrogen production I still had after menopause.  Food that races through the GI tract can't be absorbed; may as well throw the calcium and vitamin D pills directly into the toilet. I only had it partly right.

My GYN said take calcium but I insisted on seeing an endocrinologist and now that doctor will keep me from turning into a crumpled bag of sticks.  Turns out that if I'd kept taking the GYN's calcium, I'd be heading for kidney stones, joint pain, hardened veins and stroke, not to mention being a hunchback.  The endocrinologist found that my parathyroid glands are malfunctioning and telling my bones to dissolve, to put more calcium in my blood.  The endo had my chart of my high TX calcium levels and made an easy diagnosis.  My vitamin D levels are back in the normal range now that Boceprevir diarrhea finally ended (low D will ruin your bones, too, but is repairable).  I'll have a scan and probably a mini-surgery to remove the offending gland (we all have 4 of them, so no loss).  My bones will completely rebuild and recover.  I won't be Igor after all.  

My thyroid survived TX but I have absolutely no idea if the damage to the parathyroid is related to TX or not and I will never know.  I am a little tired of being a side effects experiment for my treatment team.

Advice for TXers:
Ask for calcium & vit. D levels along with thyroid levels and ask that parathyroid hormone levels be done at least once during TX.  Get a bone scan before and after TX if you can afford it.  

If you add a protease inhibitor, DON'T just accept the diarrhea that often comes with it.  Ask for help managing it.  

Check out your bone health and hormone production after you finish TX.  If you don't find the problem right away, you can end up with terrible damage.  Men get osteoporosis too.
22 Responses
9648 tn?1290094807
I think everyone should see an endocrinologist at least every few years. They are the only doctors who seem to monitor those things properly (bones, glands, hormone and sugar levels, etc.). Mine is more knowledgeable about hepC and its tx than any of my other doctors. I really feel like she's the only doctor I have who is proactive and trying to keep me healthy (the others only want to see me if I'm sick).

Good luck with the parathyroid. I have a friend who has that problem.
Avatar universal
newleaf i also was in the boc trial. 5 months eot. my problem is my hands.stiffness and pain. esp. at night. as long as i stat busy. pain is not there. do you know what this could be?
717272 tn?1277594380
I just know what hyperparathyroidism does, since that's what I'm researching lately.  Since it causes the bones to throw extra calcium into the blood, that calcium builds up in places it should not be.  You should have your calcium levels from TX.  What were your numbers?

Joint pain was one of the effects of having an overactive parathyroid.  Also kidney stones and atherosclerosis (hardening of the arteries from calcium build-up).  We have a lot of unexplained joint pain in this forum and I'm wondering if it might be related to this.
Avatar universal
so how do you repair the vit d difficiency?
Avatar universal
Taking calcium without magnesium is useless.

http://www.acu-cell.com/acn.html
Avatar universal
High Stomach Acid is of equal concern since it will frequently result in calcium and/or magnesium loss.


this is why i dissolve magnesium in water and spray it on my skin,,,by passing the stomach acids
717272 tn?1277594380
Once the diarrhea is gone, you should be absorbing nutrients through the intestines again.  After mine straightened out I took (still taking) 1200 units of D3 and raised my D levels from 32 (low) to 43 (normal) in just 3 mos.  Endo said that bone loss from D deficiency was repairable.  Of course it can take a year or 2 to bring the bone density back to normal levels but beats a permanent future of swiss cheese bones and fractures.

Rocker, people whose parathyroid hormone levels are too high should not take calcium at all.  They already have too much & it makes everything much worse.
Avatar universal
You mean taking calcium supps ?...but we have to have some calcium i would think from foods..i get all my vitamins and minerals from foods now...i havnt taken a multivitamin for over a year...but i do use epson salts in my water and sprays for magnesium absorbtion.My food intake takes care of all my minerals fats and vitamins.
717272 tn?1277594380
Rocker, the point is that HCV TX, which is well known as a thyroid killer, MAY damage your parathyroid glands, too. If it does, the parathyroid will make too much hormone, which will destroy your bones and put so much calcium in your blood that it will cause kidney stones, joint pain, hardening arteries and stroke if you don't figure it out soon after it happens.  Adding more calcium will hurt you faster.

If you discover osteoporosis after TX, check it out, don't take more calcium automatically.
Avatar universal
WOW...TX can cause bone loss....i didn t see this isn the list of pssible side effects.


http://en.wikipedia.org/wiki/Parathyroid_gland
Avatar universal
Great advice.  I was told recently was diagnosed with severe osteopenia. I will have the parathyroid test.  
  On my 12 wk of treatment, still have no voice and have not been at work for a wk.  Taking nexium, no coffee, chocolate, tom sauce, etc,  (no fun)!
Is acid reflux a common SX with treatment?
Avatar universal
I too have bone loss after TX.  I'm 55 years old and I'm just a hair of a point short of being full-blown osteoporosis.  I posted about this on another Hep C forum where I have a couple of very good female friends that are my same age and they went through TX for the same length of time that I did at about the same time I did.  After I found out about my osteopenia, I suggested they get tested.  They did get their bone density tests and they found out that they also have osteoporosis now.  

I talked to my GI's NP about this and she is adamant that this is not from the TX meds but I don't know how this can all be coincidence.  Me, my two friends from another forum and Newleaf...all osteoporosis at a very young age developing right after Hep C tx???  I had a normal bone density test prior to TX. I asked my NP to report my osteopenia to the drug company but she didn't act like she was going to.
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