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Parathyroid Scan results - question
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Parathyroid Scan results - question

I had posted previously about my parathyroid problems - this is a follow up on my visit to an endocrinologist with new test results and a parathyroid scan that i am concerned about.

My results were as follows:

24-hour creatinine urine: 2049.7 mg/24hr (high)
24-hour calcium urine: 637.2 mg/24 hr (high)
Vitamin Dm 25-Hydroxy: 29.9  (low)
Calcium, Ionized, Serum: 5.9 mg/dl (high)
PTH, Intact: 95 pg/ml (high)
Vitamin D, 1,25 Dihydrooxy: 93.9 pg/ml (high)

I also had a parathyroid scan done which said normal activity on the initial images. Report reads: Normal activity on the initial scans. On the delayed images there is a persistent salivary activity, but thyroid activity is largely washed out. No residual focal activity is present in the neck or mediastium to suggest a parathyroid adenoma.

Based on all the results, my endocrinologist says I need surgery to remove 3 ½ of my parathyroid glands. He said all four are bad but they leave ½ of a gland.

From all the reading that I’ve been doing, when the scan is negative it usually means they did the scan incorrectly and that chances are, only one is bad.

Any thoughts opinions on this? I'm worried that too many glands will be removed with out all of them actaully being bad.

Thank you so very much for your time and helping!


tracievh
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97953_tn?1193367871
This is primary hyperparathyroidism -- usually from a single adenoma that is over producing PTH.  Scans are negative in up to 1/3 of cases.  Ultrasound may be helpful to identify the adenoma, but the key is to find an experienced parathyroid surgeon.

The high creatinine is not likely significant -- compare with blood creatinine level and ask your doctor about the significance.
10 Comments
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Avatar_n_tn
Sorry for the additional question.

What does the high Creatinine level mean for me? I know it involves the function of the kidney's but does it not play a role in how the body rids itself of anesthesia? I worry about going under when I am healthy let alone when I am having a health issue.

thanks in advance,

tracievh
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Avatar_f_tn
I don't see how your endo decided you need 3.5 parathyroids out.  Almost always, hyperparathyroidism is caused by one adenoma on one parathyroid.
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Avatar_n_tn
I am completley frustrated by the inability to ever get a definite dx on my daughter who is now 22 and a college senior.  Five years ago she began to experience stress fx during lacrosse season.   One fx (lateral in her rt femur) took forever to heal and resulted in the ortho referring us to an adolescent oncologist for eval ( scaring us to death).  At that time she was tested by dexta scan and was seen as osteopenic the oncologist tested her for Vitamin D issues but everything was normal.  She then went on over the next couple of years to develop c/o of fatique, muscle aches, and heart palpitations.  Her thyroid was tested multiple times and all resullts were normal.  Since then she continues to c/o all the above s/s but now has c/o anxiey and depression.  Once again the thyroid panel was done and results were normal so they began treating her with zoloft for anxiety which has had a minimal effect. Most recently 2/19 I went to visit her at college and was greeted with "please take me to the hospital I am in the worse pain ever"
The pain had been getting increasingly worse thru the day starting as upper abdominal pain which she attempted to treat by taking 5 Tums ultras (she did not eat) the pain progressed to constant high lt quad pain and lt flank pain.  In the ER she had multiple blood test with normal liver values, normal CBC/diff Normal CMP  except an elevated Calcium level of 11.3.  The physican in the ER putting this hx together ran a test for Hyperparathyroidism, which we just got back today because the hospital never sent it out and found it in their freezer today(they state the results are still reliable as the blood was frozen).  I was fully prepared to accept dx of parathyroid.  Now I don't know what to think?  I should state that my daughter is very active, and other than occasional colds, healthy aside from vague intermittent c/o of fatique, muscle pain, heart palpitations, anxiety.  Also since hydrated at ER no more pain the abdominal xray did show what appears to be a small "calification" in the lt kidney region.  However not even trace blood in her urine so they don't think she passed a stone.  God this is all so confusing what should I do next?
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Avatar_n_tn
Forgot to tell you her PTH was 37 CA was 11.3
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Avatar_n_tn
well, that's exactly it. I don't know either. But from the reading that i've done now, it seems that when the scan fails to locate a bad gland, some DR.'s assume all are bad. I don't honestly know why that is, but i am skeptical.

I go for a surgery consult tomorrow.

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Avatar_n_tn
See an endocrinologist as soon as possible. I too was/am a very active person and now i am totally exhausted all the time with muscle and bone pain.

this site has good info www.parathyroid.com
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Avatar_f_tn
Your daughter should be checked for Celiac Sprue disease.  She sounds exactly like my daughter-in-law.
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Avatar_n_tn
I went for my surgery consult today. In a nutshell, he said my calcium wasn't high and the scan was negative, so he would not offer me surgery. He seems to think my PTH level is being caused by something else. But he can't tell me what.

I can not tell you how frustrated I am. Should I find another surgeon? Is it possible this guy is right?

tracievh
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Avatar_n_tn
I just wanted to let you know that I did seek a second opinion. The surgeon did an ultra sound and found an adenoma 3 centimeters in length on the left. This is the area of my scan that was 'blurry'. I am scheduled for surgery Tuesday. (March 3rd)

I hope this helps others who may be experiencing a situation familiar to mine.
Be persistent and pro-active with your health.

tracievh
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