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.
Depression.
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).
Kidney Stones.
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!!
merrybe