High PTH, normal calcium and lots of kidney stones

Question

Hi, my PTH is over 120, my calcium is 9.2 and both of my kidneys are full of stones. I have many of the symptoms of parathyroid disease but since my calcium is normal, my endocrinologist and urologist do not think this is the case. I've had a 24 hour urine test and that came back with everything within the normal range. I should mention that all of this started 4 years ago and before that I'd never had a kidney stone or any other symptoms. My endocrinologist also just found a nodule on the right lobe of my thyroid and I'm getting an ultrasound on that on Friday, but all of my thyroid tests came back okay and he said it's functioning normally. Just wanted to see if any one could give me any help or insight about any of this, not sure where to go next. Thank you!

leilajax · Accepted Answer

Clearly, I could be wrong, but I am under the assumption that a cyst is just another word for benign nodule.  It is common for someone with a thyroid disorder to have cysts/nodules.  Actually, people with normal perfectly functioning thyroids commonly have nodules or cysts and require no treatment, so what was seen is actually good news in my opinion, however I am only speaking as a fellow patient and obviously your doctor will know much more.  When you follow up with your doctor be sure to tell them that your parathyroid could not be seen (that is common and why they have a specific scan for the parathyroid) and request a sesstambi (again sp?) scan.  Sometimes the parathyroids don't migrate into the thyroid as they are supposed to during youth and stay near your thymus in your chest.  Again, for this reason, that is why a sesstambi scan exists.  If you request the test they will surely not deny you getting it done given your high PTH and history of multiple stones.  I am curious if you suffer from anxiety and/or irregular heartbeats or tachycardia (fast heartrate) and/or blood pressure issues.  Commonly, problems with the parathyroid causes heart arythmia.  If so be sure to mention that as well so they take your sesstambi scan request even more seriously.  In the meantime, don't freak out about the cysts.  Declaration that your nodules are cysts should offer you relief that it's not the unfortunate alternative.

becky1212 · Answer

I just returned from an appointment with the endocrinologist. He said that he does not feel that any surgeon would touch my parathyroid since my blood calcium is 8.4 and he said that my main concern right now should not be my parathyroid, but should instead be my thyroid. He seems to feel that the 3 nodules could be cancerous but that they are not large enough yet to do a fine needle aspiration. They are .3 x .3 x .4 and .4 x .2 x .4cm and another one that's even smaller. It says that they are cystic and a single calcification is visualized, and normal blood flow. It also says CONCLUSION: 3 colloid subcentimeter cysts in the right thyroid gland. No solid nodule. I really don't know what to think about any of this. I go back to see him in one month and in the mean time he is ordering a nuclear medicine scan on my parathyroid, a 24 hour urine test(but is only testing for calcium since my PTH is 120.5 and my blood calcium is 8.4), testing my magnesium, vitamin D 25, cortisol serum, somatomedin C, thyroid antibodies and thyroperoxidase antibodies. If any one has any information or advice to give to me, it would be GREATLY appreciated!

leilajax · Answer

Interesting.  I wonder if your PTH is high because your parathyroid is overcompensating for your calcium being low.  I say that because I have the exact opposite problem.  My blood calcium has been elevated for over a year now and my PTH, though normal, is slowly rising.  That is why my endo decided to do the parathyroid scan bc she said that if my blood calcium is high my PTH should be compensating by going down not up.  I personally agree with your urologist, either way, your parathyroid is almost certainly causing your stones.  Your surgeon is most likely still going to want the parathyroid scan.  I'm sure he doesn't want to go digging around in there blindly;). FYI, the parathyroid scan is a pretty long process.  I think mine took about 5 hours with a one hour break to eat somewhere in there.  No fun! 
You are really making wonderful progress and I'm sure they will opt for surgery and it will be quick and easy and you'll never pass a stone again:). As for the nodules/cysts, I've been told by all 20+ of my doctors that anything smaller than a cm is nothing.  However, I've done nothing but complain about how terrible all of my doctors are... LOL... So question your endo and and ask if having a thyroid antibody blood test would be worth ordering.  All of us with Hashimoto's have multiple nodules and heterogeneous thyroid texture.  Could be worth checking.  
Good luck, but I'm quite certain all will be just fine!

becky1212 · Answer

I had an appointment with my urologist today and he said with my PTH being over 120 that he's sure that I have hyperparathyroidism and wants the endocrinologist to have a scan done on my parathyroid and to refer me to a general surgeon, even though my last blood calcium level in only 8.4. Does anyone think that my calcium could be this low because I have had and still do have, so many kidney stones? I think I've read somewhere that your calcium can be low instead of high because of the stones? Anyone have any thoughts? I also called my endo and they said that the ultrasound tech was wrong and that I have 3 nodules on my thyroid. The two largest ones are .4 and .3 and the third one is smaller. They are calling me back to discuss a nuclear medicine scan. Does anyone know if these two scans could be done together or anything else I should know about them? I really appreciate everyone's help!

Barb135 · Answer

You're right; the thyroid nodules would be a totally separate issue from the parathyroid and kidney stone problem.  

If you haven't already, you might take a look at www.parathyroid.com. It has tons of information regarding parathyroid disease. Dr Norman, whose site it is, is a top parathyroid doctor.  There's a small segment on the Sestmibi Technetium scan.

becky1212 · Answer

Thanks for all of your input. I'm really not sure what to think...I feel like I have a parathyroid problem, but my urologist and endocrinologist do not seem to think that I do since my blood calcium is only 9.2. The endo is sending me for blood work to check my vitamin D, magnesium and cortisol levels. I think that the nodules or cysts(they have been called both), are a totally separate problem from the parathyroid and kidney stone problem. I go to the urologist on Thursday and don't go back to the endo until May 1. I will ask the endo about having a sestamibi scan then. If anyone has any more advice on anything, I would sure appreciate it. I just feel like I'm getting no where with these doctors and need some help in pushing them in the right direction so they can figure out what is wrong with me. Thanks everyone!

helyanna · Answer

The parathyroids originate from the pharyngeal pouches of the human embryo. The cells of the future parathyroids migrate from the pharyngeal area to the final location behind the thyroid gland. The cells of the lower parathyroids migrate a longer journey. Their origin is near the the thymus primordium in the primitive pharynx. The cells of the lower parathyroids begin to migrate together with the cells of the thymus. They pass the upper parathyroids on the backside and then detach from the migrating thymus primordia to settle behind the thyroid gland.

Sometimes a parathyroid primordium does not detach from the thymus primordium but migrates with it to the chest. That is why parathyroids can sometimes be found in the chest area or somewhere on the route to the chest. A Sestmibi Technetium scan is needed to find a possible adenoma (a tumor) in a parathyroid gland in the neck or chest area. Parathyroid hyperplasia  (increase in number of cells) cannot be found wery easily.

leilajax · Answer

Hmm... i hope what i typed wasn't misconstrued?  Crap!  Maybe I should stop commenting until I get my brain fog under control, so that I can think clearly while I'm typing/reading;)  I actually do know where the parathyroids are located and that some don't migrate from the chest and that some people don't even have all 4 parathyroids.  I didn't mean to say anything other than, the whole reason for a sesstambi scan is because the parathyroids are hard to detect otherwise.  Again, i'm not a medical professional nor do I play one on tv, so my comments aren't very technical they're just coming from a gal who's going through it:)  Good luck with the sesstambi scan request and keep me posted with updates, as I'm curious about the results and wish you the best!

Barb135 · Answer

Nodules and cysts aren't the same thing.  A nodule can be either solid or fluid filled; a cyst is fluid filled, but may have some solid components. You may to have them biopsied. 

"Thyroid cyst. Fluid-filled cavities (cysts) in the thyroid most commonly result from degenerating thyroid adenomas. Often, solid components are mixed with fluid in thyroid cysts. Cysts are usually benign, but they occasionally contain malignant solid components."

Parathyroids don't grow "into" the thyroid gland.  Most people have 4 parathyroids, located BEHIND each of the 4 corners of the butterfly shaped thyroid gland.  The only relationship between the thyroid and the parathyroids is the location in the body. 

Kidney stones are a classic symptom of hyperparathyroidism, so with your high PTH and many kidney stones, your doctors certainly need to investigate further.

Caryopteris · Answer

A thyroid ultrasound can show cysts, but it can't characterize them.  You would need a thyroid biopsy to find out what the cysts represent.

becky1212 · Answer

I just got back from my thyroid ultrasound and they found 2 cysts on it. They said they couldn't see my parathyroid so they couldn't check that. All of my labs for my thyroid were normal, so does anyone have any idea about the 2 cysts on there and what it means? Thanks for any help!

Red_Star · Answer

20% with hyperparathyroidism have normocalcemic hyperparathyroidism (high PTH and normal calcium - due to a tumour in the parathyroid gland).

Normocalcemic hyperparathyroidism patients are the hardest to diagnose however the PTH levels are almost always above 105 pg/ml and typically you can see high ionized calcium level in the blood and also typically (but not always) high urine calcium level. The diagnosis of primary hyperparathyroidism is made by looking at clinical symptoms and labs. 

Have a read through the article - Hyperparathyroidism: How to Diagnose Hyperparathyroidism.

becky1212 · Answer

Thanks for the reply. I will definitely mention the parathyroid when I have the ultrasound done on Friday. I've actually been to an endocrinologist, urologist and nephrologist and none of them can figure out why I've passed at least 12 kidney stones in the last 4 years and still have "numerous" stones in each kidney. Anytime I mention parathyroid, they all say that couldn't be it since my calcium is normal. I don't know how to get them to investigate it more thoroughly. Why is it so difficult to convince doctors to look into the parathyroid?

leilajax · Answer

My parathyroid is currently under investigation.  If your PTH is high and you have kidney stones, I would definitely think that there us a problem with the parathyroid even with normalized blood calcium.  The nodule that your doctor noticed could actually be the parathyroid, so be sure that the tech is aware of the parathyroid condition when you get the US.  Many times parathyroids are mistaken for nodules even by well trained radiologists.  Inquire about a sesstambi (sp?) scan.  I just had one done to investigate the parathyroid.  If your parathyroid is malfunctioning usually there is a tumor involved.  However, DON'T freak out!!!  Almost ALWAYS the tumor is benign and once it is removed all problems are resolved and you will never have stones again.  You are on the right track:)