Parathyroid Disease?

[Sonflower]

One month ago I had a complete Thyroidectomy, during surgery the surgeon discovered a marble size tumor on one of my four parathyroid glands.  The surgeon explained that there is only 42 out of 100000 people that have this rare tumor.  While I have been recovering from surgery I have been researching the new discovered disease. Not only is Parathyroidisum rare, but also hereditary to my surprise.

Does anyone else suffer from this disease in their family?

[Thypatient]

It's not in my family, that I know of.  One the other hand, many in my family died early from smoking, drinking and other not taking care of oneself diseases.  So who knows what was really lurking behind the scenes.

How bizarre is that stat, huh...

Hope you're continuing to do well.

Take care.

[redheadaussie]

I have just started seeing an endo and he has a thought I might have a tumour on one of the parathyroids, but as yet I don't know. I don't see him till the 26th Nov....so will let  you know.
  Hope you are ok after all those numbers!

[Sonflower]

I was just curious....

What has your ENDO thinking that you may have a tumor on one of your parathyroids?  Are you having specific symptoms?

Have you checked out:  www.parathyroidism.com  This specialty clinic does 800 proceedures per year.  They have developed state of the art proceedures for detecting and removing these rare tumors.  There is a lot of information on this site, worth checking out if you already haven't.

Sonflower

[redheadaussie]

I think my endo is trying to match the symptoms to a disease! I have tiredness, crankiness, etc. But my PTH is in the low-normal range and my calcium is super low without tablets, and so is my Vit D. So he was just grasping at straws. He hasn't seen my levels yet so I presume having seen them my self, I really don't think I have a tumour..but who knows!

[Sonflower]

I am only 4 weeks post-opp for a TT, when the ENT surgeon was separating one of the four parathyroids from my thyroid, a surprise marble size tumor was discovered. The surgeon later explained that a parathyroid tumor causes hyer-calciumism, causing the other three parathyroid glands to become dormant. My ENT later checked to see what my calcium level had been in previous labs. Unfortunetly there was no history!  I had all 16 symptoms of high calcium, yet my calcium level had never been included in my lab orders. Not all, but most people with this tumor have elevated calcium levels.

With your PTH being in the low-normal range. Your calcium and D levels being low. I would think that your parathyroid glands were damaged or shocked during surgery, this is quite common. If dormant or shocked, the parathyroids can wake up and function again.

Immediately after surgery my calcium levels dropped. I was giving 1000mg - 3 times per day, soon increased to 4600mg per day. I ended up in the emergency room two days after being released from the hospital. The ER doctor told me that I could take all of the calcium in the world and that my body would not be able to absorb it without taking Calcitrol 0.25 twice a day with the calcium supplement. The Calcitrol is what creates the PTH, and helps wake up the parathyroids, without the PTH the calcium is not absorbed.

www.parathyroidism.com has good info !    

I have been getting my labs done weeky, since I have been taking the Calcitrol my calcium levels have increased, however, still a little low.  Labs again Monday!

Good Luck;  Sonflower