This is not a question but an alert. You may have post treatment symptoms that ARE correctable. You ALL should have your Vitamin D levels checked. I used to have it checked regular, but with tx I lost my mojo and din't do it for the last 3 years...turns out this was a BAD mistake that put me through a hellish year.
Everyone is concerned these days with the autoimmune long term effects of HCV treatment.
No one is talking much about the bigger problem of life long glandular problems brought on by this virus and exacerbated by the tx regimes.
I was very compliant on tx. Never missed a dose in 88 weeks, never went in the sun as per instructions, never did anything I knew or thought was wrong or detrimental to my treatment.
3 months into tx I began to shake like a leaf. They put my on Lorazepam (ativan) for anxiety and left me on it for 1 1/2 years. Funny, I never did feel "anxious" but my body wouldn't stop shaking.
After tx I got off the Ativan and was fine for a while but then the shakes returned with a vengence, a sudden onset this time, they were accompanied by heart slowing down then racing, body wide tremors that went on all night, hands that wouldn't close, shin splints, sleep loss, extreme irritabilty, bloodshot eyes, headaches and about 12 other things.
Yes folks, I did that thing the docs now all abhor....
I booleaned my symptoms and came up with a short list.
Parathyroid was at the top of that list.
My research convinced me I had a parathyroid issue, but no doctor would do the tests. So for the last 9 months I went from doctor to doctor trying to convince them to run the right tests.
The liver doctor refused,
my General practictioner refuses thinking it was all from vertigo (yeah right),
so the vertigo doctor said, yes you have vertigo, but that's not why you have tremors....
the neurologist refused to test, (but at least he put me on Neurotin so I could sleep (as 2 hrs a night due to constant tremors was he.ll).
The endocrinologist refused, he checked my cortisol but not the parathyroid
the heart specialist tied a monitor but not blood work
and the rhematologist did check my sed rate, and give me a NSAID bad for the liver.
And why didn't they do the ONE lousy test I asked for???
Their reasoning ?
My calcium level was fine.
My reasoning, I had 21 of 25 symptoms of parathyroid disease, both primary and secondary parathyroidism can occur with normal calcium levels.
So finally, 7 doctors and umpteen thousands of dollars later I returned to my endo and pitched a you know what kind of fit!!!!!.
Result=PTH of 195, roughly 10 times above normal. All the time no one wanted to run the test because of the "cost".
What do you figure those 8 doctor visits added up to!!
Why?? Because a sick liver doesn't store vitamin D well, and this combined with no sunlight AND chemo can really mess up your glands. Plus HCV messes up the whole endocrine system.
Which is what I told each doctor, but they refused to believe me!!
So mystery solved. The real mystery however, is why patients in this age of information cannot suggest anything to stymied doctors without them becoming contrarians determined that the patient could not possibly be right.
God what a bunch of egotists!!
PLUS, not one of them seemed to know that calcium can remain normal with this abnormality.
Is it just me, or were some folks sleeping in their general medicine courses?
Patients BEWARE. This is IMPORTANT.
In the two years of chemo I lost ZERO bone, I know because I had a scan directly prior to and right after my tx.....in the year with this condition and clueless doctors, I lost 11%...
at that rate, if I had settled for the symptomatic medicine thrown at me ("let's control the tremors and NOT find the problem"....) rolleyes, in 5 years my bones would be half gone.
Honestly, I don't think there's any serious diagnoses going on anymore.
More than once I heard "if we do the patients want the whole system will crash"...so socialized medicine is in full swing already. It's just a shame that even patients with medical training are not taken seriously by their doctors.
So here we are back to the SAME subject that I've harped on for years now, that HCV messes up the entire endocrine system.
NOT just your thyroid, NOT just your insulin, but EVERY last stinkin' gland.
In my case, I have secondary parathyroidism, correctable by mega doses of Vitamin D, for some who have primary parathyroidism (caused by a tumor), surgical removal of the offending gland may be required.
In my case, my alkaline phosphatase was high all during tx, and this was a red flag that my liver team never picked up on. Had they known the chemistry they should have run a PTH then and there, but it never happened.
Here are some classic symptoms of this condition. I had all but one on this list. Unfortunately many of these mimic HCV, and HCV people don't go outside as much, which contributes to the disease.
Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue.
Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.
Feel old. Don't have the interest in things that you used to.
Can't concentrate, or can't keep your concentration like in the past.
Osteoporosis and Osteopenia.
Bones hurt; typically it's bones in the legs and arms but can be most bones.
Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
Tired during the day and frequently feel like you want a nap.
Spouse claims you are more irritable and harder to get along with (cranky, bitchy).
Forget simple things that you used to remember very easily (worsening memory).
Gastric acid reflux; heartburn; GERD.
Decrease in sex drive.
Thinning hair (predominately in middle aged females on the front part of the scalp).
High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
Recurrent Headaches (usually patients under the age of 40).
Heart Palpitations (arrhythmias). Typically atrial arrhythmias.
WHY did I persist until I got a REAL diagnosis and NOT A SYMPTOMATIC treatment??
Because Liver patients cannot afford to be on ANY medication they don't NEED to be on.
Every medicine is hard on the liver, if untreated this condition will result in needing pain meds, epileptic meds, heart and blood pressure meds, antidepressants meds, etc etc etc.
SYmptomatic medicine is NOT GOOD for liver patients!!
Whatever goes wrong, we need to find the CAUSE of the condition and treat the cause, treating the symptoms alone is dangerous and can even be fatal.
In this day and age, sad to say, most patients need to become their own advocates as the day of the curious doctor has come and gone. They are now all overworked and under trained. The chances they are going to go home at the end of a long hard day trying to help umpteen patients, and spend time contemplating our cases in their spare time...have come and gone. They seldom wish to stray from their specialties, and while they may be brilliant is one small niche within that specialty even things slightly outside of their area of interest are often completely unknown to them. I say this with some degree of certainty having encountered it countless times now, not that there aren't some exceptions here and there (HR for instance), but I've personally not been privledged to encounter them within the "practicing" populace. My kingdom for a "House".
anyway love ya all, hope this helps somebody, now, back to my garden!!
Oh hell merrybe, I have every one of those symptoms except for the thinning hair on down and I just had my Vit D level checked and it was perfect.
I rather think it's old age and this particular symptom you listed: "Spouse claims you are more irritable and harder to get along with (cranky, bitchy)." Forget about it, there's never going to be a cure for that one.
main keys are fatique, muscle pain, deep bone pain, tremors, high alkaline phos. or high albumin,
without any exposure to the sun, and with a faulty liver this condition is not as rare as in the general populace.
As I said....the blood work was finally done.
MY PTH was 195, ideally that number should be 20, with 10-60 being the range considered allowable, not optimal.
Any imbalance in D leads to Calcium issues. The jaw looses it first, and my teeth began to need pulling after being fine for 60 years. The dentist said it was HIGHLY unusual loss of jaw bone going on.
Lack of calcium also make the nerves jumpy, the brain and nerves are dependent on calcium, the myelin sheath is kept intact and so forth, so it does make folks far more reflexive and reactionary.
When trying to sleep the leg pain and cramps and bone pain were unbearable, that and tremors left me 2 hrs sleep....after 2 months of that....grin...was I a happy camper? hardly.
I hope everyone will keep an eye on their levels.
Normally extra D is stored in the liver, and therefore calcium is easier for the system to regulate.
However as scar tissue replaces healthy tissue, the amount of cells able to store D decreases, and ergo the chances of developing this are far greater.
Since starting the therapy a month ago my PTH has dropped 100 points, my foot cramps and shin splints have subsided, and the deep hip pain has as well...
I'm hoping in another month perhaps my hands will return to normal as well.
The best thing about all this is looking forward now to less pain, and a reversal of this "false arthritis. My hands have been so stiff I can't close them enought to even hold a broom in the morning!!!
I'll be glad when all this stiffness subsides.
My thyroid is shot and I have no Vitamin D in my body considering I drink milk all day long which should be fortifying my number somehow. I've been taking Vitamin D now for months and have to get my number rerun shortly. I'm interested in seeing if this does help correct some of the issues of post tx life.
I'm glad that you finally got your answer. You fought the system long and hard and can have some peace of mind knowing you are not crazy.......you were right all along. That in itself is priceless.
"my foot cramps and "
So is this why my foot cramps have been going away? They are few and far between now and before that were extraordinarily painful. Now that would be worth taking the vitamin D all on its own!
well I tried to reason with my endo that treating me for secondary parathyroid might not be wisdom, but he insisted...so I got a second opinion, and he insisted too...
it seems they ALL insist on treating this way, even though Dr. Norman on Parathyroid.com insists this is wrong, wrong wrong...and even though the guy does thousands of parathyroid surgeries every year, and is well published, and I took them the literature, they still poo=pooed his concerns....
So I told both doctors that I was worried this might give me kidney stones or a stoke...and they said that was nonsense,.....so I treated their way...and 7 weeks later here I am just out of SURGERY for yes..
.lovely KIDNEY stones!!!!!!!!!
Sheesh...if I had a nickel for every time docs have done me more harm than good could we party down!! I'm just kicking myself that I let my guard down and went along with a treatment plan that didn't make sense....first we throw pills at you...if that doesn't work then maybe we'll do more...if you are still alive???????????
Anyway, I though I should alert everyone...You can have primary parathyroidism without high calcium, and treating with vitamin D without first being SURE (which they never want to run all the tests to be sure) is not always wisdom...and once again we pay for their ignorance.
at least I can be grateful it wasn't a stroke!!
too much D, to correct parathyroid disease according to Dr. Norman WILL give you kidney stones, but 2 endos told me he was crazy...so I'll leave it to the reader to decide who was crazy in the end. As I lay here with tubes still stuck up in me.....ouch.
I'm sorry to hear that you are down. The medical raod has plenty of minefields to cross. Hard to know the best route sometimes. Only God can know for sure and I can't always get a word. I often think of the game show "Lets make a deal" in regards to HCV and its assorted complications. Choose wrong and you get a goat wearing a hat or something else you didn't want. The goat might not be so bad since we don't much enjoy mowing the lawn.:>)
Take care friend,
Merry, you have lured me back into the forum. I'm horrified that with all of the bloodwork you get, no doctor would agree to simply write the order to run a silly PTH (parathyroid hormone) test on your sample. 'Squeaky wheel' works 2 ways in the American medical community: it can get the results you are seeking or it can make some medicos plant their feet and insist on going strictly by the book. It's your money. It's obscene that you can't spend it as you see fit on a blood test and also that patients have so little actual influence over their healthcare.
Hope they have already started you on bisphoshanates to correct the bone loss. Bone loss from Vit. D deficiency-caused hyperparathyroidism is completely correctable. Glad you found it before your bones started breaking.
Great post, thank you! I had all the symptoms you've listed prior to tx (most of them were gone during treatment!), now when it's over and my body learning to live again without infergen and riba, I see that some of the symptoms are coming back. I want to ask for the same test at my next doctor visit.
well, it's not so simple, first I have to get the tumor out, I should NEVER have been put on vitamin D without first having the scan, but 3...count them THREE docs all poo pooed the info and refused me until I treated for secondary first!!!!!!!
yes it's official, I have primary, not secondary....FINALLY they agreed to do a sestamebi scan, the only definitive test, and I made them throw in a ultrasound as well....
So when all was said and done I was right on both counts A, it was parathyroid, and B. it is a TUMOR.
it is a tumor, is is probably this that produced my "riba shakes/anxiety" to begin with, as one classic symptom of this disease is the shakes....which were always worse when the Riba dose kicked in each day (meaning the riba had to be effecting calcium levels and gland PTH outputs somehow.)
It's just unfortunate that doctors trained 20 years ago all still believe you can't have this disease with normal calcium...thats what they told me....but it is FALSE....
so before I go to restoring the bones, I;ve got to get the tumor out...any more calcium right now will lead to more kidney stones...until the offending gland is removed.
I go to see the surgeon next week....would have sooner but she was on vacation.
Only a few surgeons are tained in microsurgery. Microsurgery means about 20 minutes on the table, not 1-2 hours.
ergo I had to find an experienced surgeon. The longer a liver patient is under anesthesia, the greater the chances of liver shock. Not wanting to shut my liver down meant that finding someone who could do this in 20 minutes was the way to go.
wish me luck, and pray more folks beging to realize they need a young endocrinologist on board, I've had it with the old guys...they just haven't kept up with current research...and they looked at me like I was nuts when I tried to tell them.
Even though I was quoting the top parathyroid surgeon in the country, they all just rolled their eyes....but hey, it's just par for the course at this point, as I know you know all too well as well.
If I had a nickel for everytime they done me wrong. Sounds like you are very well read and in tune with your body....My daddy use to say they ONLY have a Licence to Practise, most occupations you get a licence or certificate that says your qualified...Theirs is only a licence to practice
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