Hyperparathyroidism Questions

[Achilles84]

Hi there,

I have a few questions you guys could help me with.

In the last months I struggled with a lot of problems mainly muscle weakness and fatigue.

After checkíng out lots of neurological and other things which turned out normal,a friend told me I should investigate hyperparathyroidism.

and at the moment I would say it could be:

I have constant high to slightly elevated calcium levels
symptoms I mentioned
as well as an extremly sensitive feeling in my neck area which is also very sensitive to even light pressure

now here is my questions: my symptoms of weakness and fatigue are pretty severe,but my calcium levels are only slightly high.Logic-wise shouldnt I have even higher calcium considering my symptoms or is this assumption to general?

would greatly appreciate your experiences

thx a lot

patrick

[Barb135]

check out www.parathyroid.com ---------- there's a ton of information there -- including symptoms,causes, treatment, etc --- very informative..

[TamraW]

Please post your calcium levels, along with PTH if you have them. Also, are you getting serum or ionized calcium checked?

:) Tamra

[Achilles84]

I will as soon as I have them.

calcium is always high to slightly elevated usally around 2,62 mmol/l

[TamraW]

I am not familiar with your calcium labs. My last calcium test was a 9.6, perfectly normal.

:) Tamra

[Achilles84]

sorry honey,

calcium measurment is measured a bit differently here in germany.For orientation,reference is between 2,25 mmol/l and 2,65 mmol/l.

my actual calcium level measured today is 2,79.So that´s already quite a bit of.

I will get levels for phosphor and PTH tommorow.that will eventually make the case clearer

Patrick

[Achilles84]

hi there,

got my first PTH results today.It ranges at 53.

So calcium is slow to elvated,last one 2,79 as I wrote and pth now 53.If you consider my symtpoms additionally how likely is hyperparathyroidism ?!

[TamraW]

Your calcium dosen't have to be terribly high to have parathyroid disease.

:) Tamra

[TamraW]

Also, kidney stones and bone pain are big symptoms of parathyroid disease.

:) Tamra

[Angie259]

I am a 61 year old female who has gone through NUMEROUS blood tests, ultrasounds, sestamibi scan, 24 hour urine - not once, but 4 different times, changes in my blood pressure medication, name it and I have had it.  I am very frustrated. This has been going on for at least 14 months.  At first my calcium level was elevated - 10.6. My doctor said we would watch.  Next calcium level was 10.5 so he ordered a PTH blood test. It was 158 so I was sent to a endocrinologist.  Dr. did ultrasound and ordered a sestamibi scan.  Both showed  a swollen right gland, but they are not sure it is a tumor.  My vitamin D is extremely low so I am now taking Vitamin D once a week for 10 weeks.  The last blood tests were approximately 3 weeks ago. My calcium was 9.8 but my PTH was 146.  I have had a bone density scan and  it came out normal. I have not had kidney stones, but my creatnine level is is too high - don't know the reading on that.

My lower back is very weak and some days I have pain and someone days I do not.  I am tired and irritable most of the time and I have no real reason to be unless I do have a tumor.  I am going to one of the top hospital clinics in the southeast, but I am beginning to realize if your calcium is  "low high" or borderline  they just continue test after test.  My blood pressure pill had a diuretic in it, so I have been taken off that and put on one without a diuretic which caused me major problems. Dr. states that for 2 weeks I need not to take it. She thinks diuretic could be possibly  causing pth levels to be high as well as my creatnine to be high.  Has anyone else had this problem? I can certainly understand how those of you feel about numerous tests going on for a year and more and still not having any answers.  In addition, all of the urine readings (24 hr), I had low calcium - go figure.  Thanks to anyone that takes the time to answer.

[TamraW]

24 hour calcium tests are not always  accurate. Sensamibi scans have a high rate of error if done by a tech who does not do parathyroid on a regular basis. Very few techs know how to do a good scan because parathyroid disease is not common.

PTH should not be 158. Any calcium in the tens with such a high PTH is VERY suspicious of parathyroid disease. Many parathyroid patients suffer low D. It is the body's defense mechanism. Low D means calcium doesn't absorb very easily in the bloodstream, meaning less chance of kidney stones, etc.

9.8 calcium is not unusual in people with parathyroid disease. Calcium will jump from day to day as the faulty parathyroid struggles to find balance.

Please visit Dr. Norman's website: www.parathyroid.com .

I have had a personal consultation with Dr. Norman in Tampa. He did not try to lure me down there just for an operation. Some endos dont' like him, but HE KNOWS parathyroid. This is all he does. He ended up telling me what my endo should have known, that I did not have parathyroid disease, but he suspected I had Hashimoto's Disease, which I found out I do have.

He will not care that your Sensamibi scan was inconclusive. He will go by your bloodwork. Yes, PTH can increase due to low D. Mine did, but it peaked at 71, not 158! That is just too high, and I really suspect something is going on with the parathyroids. If it was parathyroid cancer, which is VERY rare, your PTH would most likely be in the thousands, so don't worry about cancer. When the parathyroid goes bad, they call it a tumor, but it isn't cancer.

Most insurance covers his surgery. It is a 20 minute surgery and the scar is one inch or less and he seals it with a surgical bandaid! You go home within a few hours. You eat dinner with your family that night.

If I had parathyroid disease, he is the only surgeon I would trust to operate on me. I really wish he did thyroid surgery, too.

Best of luck!

:) Tamra

[Angie259]

Tamra, thank you so much for your help!  I have already been considering Dr. Norman after reading all of the info on his website.  So great to communicate with someone who has actually spoken with Dr. Norman - sometimes I feel so alone with this problem.  Thanks again. I will keep you posted.