more questions on hyperparathyroidism

[Nillie74]

Hello Doctor Lupo,

You answered a question for me before regarding primary hyperparathyroidism.  Thank you so much for responding.  It was very helpful.  I read the information on parathyroid.com that you suggested and it as very informative.

Here is the message from before:
by Mark Lupo, M.D.

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Mark Lupo, M.D.
Male, 38 years
Sarasota - FL
Member since Aug 2005

"Mar 17, 2008 06:13AM
I am surprised the caclium went down - -but part of hyperparathyroidism is a fluctuation in ca and PTH levels.  The initial high ionized calcium with inappropriately normal PTH of 50 in the setting of low Vit D is diagnostic of primary hyperparathyroidism.  Particularly in the setting of osteoporosis at this young age.  PTH levels sometimes fall a bit with vit D treatment, but I imagine if this is rechecked over time, the PTH and Ca will be on the rise again.  Check out parathyroid.com for more info on these complex interractions."


From what I read on the parathyroid website, it seems that there is possibility that I have a problem with my parathyroid, but could be very hard to diagnose.  I have had calcium levels going up and down.  My ca levels actually went down too far (8.8) in February when I took vitamin D for my deficiency.  I stopped taking it and you said my levels would likely rise again.  My PTH and calciums were checked a few days ago (June) and my PTH is not high at 34, but my serum PTH calcium was 10.2.  My ionized calcium was 5.5 - in range.  (For the past 2 months, I have been getting at least 3 hours of direct sunlight about 5-6 days per week. I have not been taking vitamin D supplements and recently my D3 was 34 and my D2 is less than 5. ) My calcium levels are still in range, but according to parathyroid.co - it could indicate a problem.  I am unable to get a doctor to look into this any further even though I have many symptoms that were listed on that website like osteoporosis (at age 33), frequent urination, acid reflux (LPR), thinning hair, trouble sleeping and more....  I have hypothyroidism too and a lot of the symptoms are similar to parathyroid disease and have improved since my thyroid hormone dose was increased.   But, I still feel that there could be a problem.  I also just found out that I have high testosterone (274).  But, I have had a CT scan on my abdomen that revealed no tumor and a pituitary MRI which revealed nothing recently.  I did have a pituitary MRI in 2001 that showed a possible microadenoma, but it was inconclusive they said.    

I also read info about MEN 1 syndrome and wonder if there could be correlation with that.  My gastrin level on fasting was 65 and my doc said that was a bit high considering I was fasting.  I have pain in my pancreas area every day.  It was acute, then I was treated for H.pylori and now it is chronic, but off and on pain throughout the day.

My doc wants me to take Spironolactone for the high testosterone and zantac and protonix for the acid.  I don't like the side effects I am reading and feel that the cause is not being addressed.  

Maybe I should come and see you.  Please offer any advice on whether you still think I need to explore parathyroid disease and possibly what I could do to see you.

Thanks so much for your time,
Stephanie


This discussion is related to Parathyroid problems?.

[Thypatient]

To post your question to the dr:  Click on the ‘Forum’ (has a yellow think balloon below it) button above.  On the right you will see the ‘“Ask a Doctor” Forums.’  Scroll down and click on the ‘Thyroid’ button to get into the dr’s forum.  Then the rest is just like posting a question here.

Hope this helps.  Good luck.

[stella5349]

No nothing gets transferred to the community side when trying to post to our experts.

Are you sure you are clicking on the expert side of the Med Help board?

If you adrenal testing is coming back high (which if this reading is done in the am) that would be OK - If this reading is high in the afternoon to late evening you may have problems still.

Have you looked of any adrenal work books to see if you may fit into a disorder?

I would spend some time looking over Dr. J WIlson's adrenal fatigue site. See if anything pops out.

I notices your question really was on hyperparathyroidism. Have they looked over all those tests? Sometimes they come back within range until one day......... they show up.

Read the parathyroid.com site over too. They have a check sheet on symptoms there too.

[Nillie74]

I have only had 24 hr urine cortisol and saliva tests in the past.  The urine tests showed levels of 103 (high was 105) and a couple others were borderline.  One was very normal, but I had taken some medication (one of them was licorice root to help with ulcer type pain and I read that it can make the body hold on to cortisol) during that test.  I heard the meds could affect it, but doc said it was ok to do the test.  I think I wasn't excreting it in my urine because of that.  

My saliva tests (i've had 3 different ones that check 4 times in the day) that I had done through a homeopath, were all above the range.

I just picked up a 24 hr jug today and will do the test tomorrow.  I slept good last night, but 3 days out of the last 7 - I had no sleep at all.  

I am trying to figure out how to get this message on the Medical forum so that Dr. Lupo can see it,  I guess it is full and then just automatically puts the message in here.  Is that how it works?

Thanks for the help!

[stella5349]

Adrenal disorders are extremely hard to get Dx'd - most doctors will not even look in that direction due to the general symptoms that pop up.

More often than not - anxiety becomes the doctors Dx and that only becomes worse.

Have you had any adrenal testing so far? To start a 24hr cortisol would be good. When cortisol levels are off - everything can throw a person off.

[Nillie74]

Thanks so much for responding.  My PCP was actually willing to do the men 1 test, but the labs here in my state don't have it available unless you talk to a genetics doctor.  Thank you for the info on where to get the test.  I thought of the MAYO clinic before, and was afraid they wouldn't help.  I hope you have success!  Let me know what happens.

I have been going without sleep for an entire night - 3 times this week.  I feel fine and I think my cortisol is high.  I have thinning hair, and my wounds don't heal and other symptoms of Cushings.  But, docs won't diagnose unless you have full blown disease.  

How does it "appear" that you have an adrenal adenoma?  I read online that a testosterone level as high as mine can indicate one.  I really thought something would show up on the CT scan.  But, my doc (a different one) is going to do an MRI.  

Thanks again,
Stephanie

[val1198]

I suggest you gather up all your tests and records and go to Mayo Clinic.

I just got MEN1 genetic testing because I've had a PTH adenoma removed and now it appears I may have an adrenal adenoma (Conn's.)  Fortunately, my MEN1 is negative.

I have an appointment at Mayo in August.

I got MEN1 testing at GeneDX.com

Val