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967168 tn?1477584489

I'm a train wreck

I feel like when I hit 40 my whole body fell apart and has been getting progressively worse over the past 3 years, like my body went off track and a huge wreck :P

In 2009 I found out I have malignant heart arrhythmia's, heart electrical problems and structural problems, my ANS (autonomic nervous system) went whacko and I couldn't get out of bed or off the couch for almost a year, nerve damage and a ton of other things wrong.  I have had non stop nausea since I had surgery in Aug 2009, they put me on prevacid and told me it was probably due to the heart surgery I had (ablation, cardiac cath & pacemaker/icd implant) but it hasn't stopped - even when I go on a mild diet; the only thing that helps is Zantac.

The worst thing right now is the pain in my bones; I don't know how to describe it - silly I know but does anyone have this? I feel like I'm going crazy literally...the inside of my bones in different areas of my body hurts so much I cry sometimes, does this make sense to anyone?  

This is what's throwing me off - it's not always intense; it goes from a mild pain to excruciating. The bones in my calves, middle back (near my bra line) and my pelvic area are the worst and where I feel the most intense pain.

I don't even know how to describe this to my doctor - just tell her the "inside" of my bones hurt? Anyone else have this or know what it may be?

sorry to vent if that's what this sounds like...today is a really bad day and the pain has been bad
8 Responses
967168 tn?1477584489
I forgot: I had a chest CTA (with contrast) and Xrays that showed I have degenerative changes in the thoracic spine; vascular crowding and cardiac enlargement and ultrasounds that showed: Sclerotic changes seen on both sides of the symphysis pubis and Changes of Osteitis pubis with some sclerosis identified in both side of pubic symphsis (my youngest child was 2 1/2 when these were taken)
1539238 tn?1292861643
OH LISA,

I feel your pain...I have been misdiagnosed for YEARS.  Finally I asked for the right test.  (the PTH, calcium, and vitamin D).

The condition you are describing sounds like Hyperparathyroidism  HPTH.  Bones, Stones, Groans, and Psychic overtones.  

It causes your calcium to go haywire, by overproduction of the parathyroid hormone.  It pulls the calcium from your bones causing excruciating bone pain, muscle spasms, and bone loss and heart problems, you name it.  

Calcium is so important to the body's function it is the only chemical that has 4 redundant glands to regulate it properly.  When your calcium is out of whack, your entire body is.  Muscle contraction, nervous system, digestion, heart, bones....all of it.

Go to parathyroid.com and research it.  then ask for a PTH, calcium and vitamin D blood test, takes all of two hours to get the results.  Took me ten years of suffering before I figured it out.

Please do let me know.

Sorry you feel so crappy, but if you will eat something calcium rich every few hours this will alleviate a lot of the bone pain,  

It is true that HPTH causes the calcium level to be high, however....the parathyroid is malfunctioning, sending out too much hormone telling your body it is low in calcium, so it pulls it right out of the bones to satisfy its need, if you do not consume enough of it...dont take pills, only diet rich calcium.   The body protects itself from calcium over absorption by lowering the Vitamin D in your system.  So if it is HPTH, calcium will be high, PTH will be High and Vitamin D will be low.  

As long as you eat enough calcium rich foods,  it will leave your bone calcium alone.  

This is the only way I can manage my symptoms until I can have the adenoma on my parathyroid gland removed.  After the surgery your bones will heal themselves!!!! and you will feel better all over.

Sincerely,
Lori
1539238 tn?1292861643
Lisa,

What I meant to say was do NOT take calcium supplements, only take more calcium through your diet.  Cheese, cereal with milk, and for a quick shot, I use Dan Active Immunity 4 oz, probiotic drinks, in the yogurt section of the store.  

How I found this out was by a terrible mistake my doctor made when my calcium level came back as high, she told me to STOP eating all dairy and calcium rich foods, due to my GI symptoms.  

I did it for three days and thought I would die from the pain.  I went to the ER and they confirmed that my suspicions about the calcium were correct....when I don't eat it, it pulls it from the bones, and that hurts like HELL.  

So to my jerko doctor, that gave me the bad advice actually helped me to realize what my bone pain and indigestion and gas, and bloating, and and and was caused from.....LACK OF CALCIUM IN MY DIET.  

The parathyroid is the control center that tells your body how much calcium it needs to function, when there is a tumor there it sends all the wrong signals.  Pulling calcium from the bones causes osteoporosis, osteopenia, gall stones, and kidney stones as this is NOT the kind of calcium your body wants, but it has no choice since the signals sent out by the malfunctioning parathyroid say you are low, so to preserve your life, it pulls it from the bones.

So dont take supplements as they may harm you, but do eat a dairy rich diet.

967168 tn?1477584489
thanks for the reply

I've had numerous blood tests - but haven't had anything done in awhile so I'll make sure I ask for them to do my calcium again  -  my calcium has always been normal so I'll ask about a PTH and vitamin D also just to be sure.
1539238 tn?1292861643
Dear Lisa,

What your Doctor and the lab may call in the "normal" range may actually be high for you.

It is so important to get a copy of the results, and look at it all together.

They first told me that my calcium was only "slightly elevated"....no worry....rite.

On Dr. Norman's website he has collected data on more than 10k patients, and they all report the worst symptoms with only slightly elevated calcium as my dr. calls it...rather than High calcium.   My calcium level was 10.4....normal range cut off is 10.2...so they think its not that bad cause it is just barely out of range...That in combination with the PTH being 97  (top of the normal/hIgh range is 55)  and my vitamin D level is only 11 (normal range is 30-100.

Calcium is the only mineral in the body that requires 4 REDUNDANT glands that all do the same thing...because it is SO important to HOMEOSTASIS of the CELLS in every body system to have the proper amount of Calcium in order to function....

The Body does NOT like to be in the 10's at ALL.  Think about it, two lungs, two kidneys, and FOUR parathyroid glands.....that is how vital calcium is to life and proper body function.

I have also read on parathyroid.com that you can have calcium in the NORMAL range with high PTH and still have a paratthyroid adenoma....read about that here:

http://parathyroid.com/diagnosis.htm

Parathyroid Function Quick Facts
The parathyroid glands monitor the calcium in the blood 24 hours per day.
The four parathyroid glands make more or less parathyroid hormone (PTH) in response to the level of calcium in the blood.
When the calcium in our blood goes too low, the parathyroid glands make more PTH.
Increased PTH causes the body to put more calcium into the blood.
Increased PTH causes the bones to release their calcium into the blood.
When the calcium in our blood goes too high, the parathyroid glands STOP making PTH--they shut down.
Calcium is the most important element for the nervous system, the muscular system, and the skeletal system.
This is why parathyroid disease (over-production of PTH) causes symptoms of the brain, muscles, and bones.
People with normal parathyroid glands have calcium levels that jump around very little or never... it's almost always the same number in the 9's.
People with a bad parathyroid gland (hyperparathyroidism) have grown a tumor in one of their parathyroid glands that has lost it's regulatory system... so the calcium levels jump around all over the place, often being high (over 10.2).
It is NEVER NORMAL to have high calcium levels.
High calcium levels almost 100% of the time means you have a tumor on one of your parathyroid glands.
People don't like having high calcium... it makes them feel bad; ruins their kidneys, liver and arteries; causes strokes and cardiac rhythm problems; causes kidney stones and osteoporosis; and can even increase the risk of cancers such as breast cancer.
If you have hyperparathyroidism (a bad parathyroid gland), you should get it removed. You will live longer and feel better. Humans don't like high calcium!

Diagnosis and diagnosing parathyroid disease and diagnostic testing of parathyroid disease.It is NORMAL for patients with hyperparathyroidism (parathyroid disease) to have calcium levels that are high one time it is checked, and normal the next time it is checked.

ALL patients with hyperparathyroidism will have calcium levels that change from day to day, week to week, month to month. MOST patients with hyperparathyroidism have calcium levels that FLUCTUATE from high to slightly high, to high-normal.  This does NOT mean that you don't have the disease...you do, and this is how it affects most people.  

Fluctuating levels of calcium is one of the '10 Parathyroid Rules of Norman'.  One mistake that is often made by physicians who don't see much of this disease (it is pretty rare), is that they will measure the calcium repeatedly to see if it is "staying the same" or "slowly trending up" over time. They (and you) can get a false sense of security when you see that your calcium is only slightly elevated and not getting any worse over time.  

This is one of the basic BAD assumptions you can make with parathyroid gland disease. Remember, once you have this disease, it will not get better on its own. Furthermore, it will always get worse...slowly perhaps, but it will get worse.

Read more of this web site to understand this basic principle. Something else to keep in mind, the calcium in your blood and in your urine is coming from somewhere--your bones! If you haven't looked at our page of pictures of parathyroid tumors you need to do so.... look at the tumors we have removed from patient's necks and compare their calcium levels to yours.

MOST DOCTORS DO NOT KNOW HOW TO DIAGNOSE PARATHYROID DISEASE.

Normally, parathyroid disease is found because your doctor checked your blood for abnormalities and found the calcium level was too high. Typically, the doctor will repeat the calcium to see if it really is high, or if it was just a 'lab error'.0

If the calcium is high again, the doctor will order a parathyroid hormone level to be checked. If the parathyroid hormone comes back elevated...that's it... you have parathyroid disease (hyperparathyroidism).

If the PTH level is "normal"... that's it, you still have hyperparathyroidism.. YES. High calcium and ANY PTH LEVEL that is not very low means you have hyperparathyroidism.

This is a very important sentence!! Many of you will need to print this page and take it to your doctor so you can show him or her this sentence.

And then, print one of our pictures of parathyroid tumors and show it to your doctor too... and show that these tumors come from patients with high calcium levels and "normal" PTH levels.

Geeezzz, it breaks our hearts every day to see the number of people who are feeling poorly because of parathyroid disease who aren't being treated correctly because their doctor doesn't know much about parathyroid disease... and won't go through the trouble of looking it up on the Internet, or making a phone call to another doctor who knows.

MANY patients with large parathyroid tumors have high calcium levels and NORMAL PTH levels... THIS IS STILL HYPERPARATHYROIDISM, AND THIS STILL MUST BE FIXED! We operate because the CALCIUM is high, regardless of the PTH level!  KEEP READING!

Although MOST people with hyperparathyroidism have the classic presentation of high calcium in the blood and high parathyroid hormone (PTH) in the blood, about 20% of people with very significant parathyroid disease will have high calcium and normal PTH levels. This is very important... it was discussed in the table above, but we are doing it here again because most of these patients are not being diagnosed correctly... it is overlooked by many endocrinologists (some endocrinologists just don't see many patients with this disease).

***********                                              About 2-5% of parathyroid patients will have   NORMAL  Calcium levels and HIGH  PTH    levels (like patient number 10 in the table above).  These patient are some of the hardest to diagnose, but two things are very common in this group 1) high ionized calcium levels and 2) kidney stones.  Thus, if you had a recent bout of kidney stones and your calcium is "normal", make sure you check ionized calcium levels and PTH levels. Checking the urine for the amount of calcium in the urine is also a good test for this group... (a test that is not very helpful or necessary for most patients)

Patients in all three categories have hyperparathyroidism, and all of them will need surgery. They will all benefit from surgery.


967168 tn?1477584489
wow sounds alot like how hard it is sometimes to dx thryoid problems (which I'm going to have tested also)

thanks for the info I'll make sure I bring this up to my dr; I have a long list =)
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the MedHelp forum!
First of all get a complete hormone panel—FSH, LH, estrogen, progesterone, Thyroid profile, blood sugar and adrenal gland function. Also get serum calcium checked. Apart from this anemia, rheumatoid arthritis and chronic fatigue syndrome should be looked into.
Hope this helps. Take care!

967168 tn?1477584489
thank you for the response

I've had several blood tests before & after surgery; but not some of the ones you have listed, so I'll make sure I ask for those to be done also
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