Bone loss from TX part 2

[newleaf09]

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.

[nygirl7]

If you have high calcium then you most likely have a parathyroid tumor.  The good news is the operation is quite quick and simple -n like less than 20 minutes I believe and as soon as it is taken out you will begin to feel better. Unfortunately due to all the low vitamin D levels osteo is more likely in someone with it and that isn't as quick and easy a situation to deal with. But it's a pretty easy diagnosis and fix - the parathyroid part - so the sooner you are diagnosed the better. Not the kind of thing I'd hang out and not have checked out if I thought I had it. But I do go to an Endo already cause my thyroid pooped out on tx.

Since brain fog is indeed one of the symptoms = I hope that we can all remember long enough to realize that we should be keeping an eye on it. I agree anyone who's been on treatment for an extended amount of time at least should see an Endo once in a while.  Better safe than sorry.

[Kristina538]

Thanks so much for your informative post which will get me asking about parathyroid.   After 10 months of awful joint pain (hands improved but shoulders & arms taking longer), I've been diagnosed with early osteoarthritis in my upper neck with bone spur growth.

It makes sense that more calcium in the blood stream may have something to do with this;  I just feel it's auto-immune, as there has been some improvement, especially since Naturopathic help with adrenal support, B12 drops & high potency Omegas.  Doc said 'spondylitis' but now I've got something more to try to find a cause.   Thanks again!!

[fashion345]

Hi Newleaf,
Did not see your responses before the last post.  A little out of it with all of the cough meds, from the acid reflux.  I did post under "Raspy voice".  I am convinced the acid production became worse from treatment.  Always had issues, just worse.
Just want to get back to work, so I can get my mind off all of this!!

[newleaf09]

Rocker, didn't you read the labels on the meds online or the informed consent from your trial?  Thyroid damage, possibly permanent, was, to me, the most frightening potential side effect on the list.

I think the profession has little interest in how interferon works or what effects it leaves behind.  Research is extremely expensive.  They all know they have to get away from interferon and are spending the money developing new, more specifically targeted drugs, not figuring out specifically what IFN does.  My doctor said it alters 100 proteins in the body, so it's no wonder that everything does not automatically shift back immediately.

[Rockerforlife]

im not rying to scare anyone,but i like the way thaey it causes brain fog...i think it may be a form of brain damage?

[R Glass]

  It’s appalling that the Medical Profession has so little interest in the long-term effects of what this treatment has on people. Yes, Peg/Riba is all we have for HCV but why is there little to no concern for post treatment? We are basically booted out the door after tx and sent back to our GPs, which are not Specialist in the field, and they do the only thing they know, Treat The Symptoms.

[Rockerforlife]

I agree,there are side effects that are not even on the list i hear some have during and post TX...IS possible thyroid destruction on the list...i dont thin it is

[newleaf09]

In my opinion, much too little basic research is done these days.  The full pegintron label lists things that did not make it to the shortened package insert.  Stuff like reduced estradiol (estrogen) production was seen in monkeys, but there's no info relating that to humans; the studies were never done.  Some things I imagine they suspect are problems but keep it to themselves.  The physician's attitude that I have encountered is complete ignorance in those who don't have a relationship with the disease and the feeling from those who work with it that we patients are lucky that they treated us with it and it's such a fine miracle that we should not complain, and are probably just being hysterical anyway.   It makes it really difficult to treat the effects of the meds later when you can't get anyone to acknowledge that there are effects.  

[meakea]

Rocker, it's not in the list of side effects but, if all of the docs are like mine...denying that things could be related to TX...how can these things ever get on the list.

[newleaf09]

My score on the bone density scan was -2.39.  -2.5 is osteoporosis.  Pretty awful discovery.  I did not have acid reflux but have heard of people having all kinds of things that don't show up on the label related to difficulty tolerating the meds; taste perversion, nausea, etc.  9 mos. past EOT I sometimes can't imagine how bad off I was on TX and am hoping to completely forget it.  One foot in front of the other.  Did you tell doctor about reflux?  Protonix?

[meakea]

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.

[fashion345]

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?

[Rockerforlife]

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

[newleaf09]

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.

[Rockerforlife]

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.

[newleaf09]

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.

[Rockerforlife]

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

[Rockerforlife]

Taking calcium without magnesium is useless.

http://www.acu-cell.com/acn.html

[virgocharm]

so how do you repair the vit d difficiency?

[newleaf09]

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.

[virgocharm]

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?

[GreatBird]

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.