High PTH (parathyroid)serum level & calcium?

[Lori707]

I was just diagnosed with RA a couple weeks ago. I've had and still have elevated calcium serum levels for the past few years and high normal PTH (parathyroid) levels recently. Today the docs office called and said my PTH was High. Anyone familiar with this?

[AmyK2277]

I had an increased PTH and it was discovered that I had a parathyroid adenoma...secondary to the adenoma I had kidney stones and osteoporosis. I had a pituitary prolactinoma as a teenager, so my doctor did a genetic test for MEN1, which I tested positive for. I had the adenoma removed in 12/08, but ended up losing my right kidney anyway. By the time they found the adenoma, I already had osteoporosis, because the adenoma was leaching calcium from my bones and teeth and pushing it through my kidneys. I lost my right kidney last february because it was extremely damaged from all of the stones I had passed. In late July, I was diagnosed with RA...there is no doubt in my mind that the RA and calcium levels being depleted by the adenoma are related. You need to see an endocrinologist immediately. There is definitely something going on with you.

[Lori707]

Hi and thanks for responding!

I'll bring you up to date. I'm 59 now. Have been pleading with doctors for the past 3yrs to give me a Lymes disease test and they are all saying "NO". I had lymes 23yrs ago with the typical bulls eye rash. My treatment didn't work because the parasites unleashed themselves again (obviously they were dormant) about 3 yrs later. I then received daily IV antibiotic therapy for 3 weeks. Fast forward 17 yrs and I got sick. In Jan 2010 I CRIED/PLEADED/BEGGED one of the doctors to test me for it and he did. I then received a "note" in the mail indicating that my Lymes test came out POSITIVE. This is after seeing numerous doctors of all specialties including 2 infectious disease doctors from a teaching hospital,4 rhuematologists,3 endocronologists,several neurologists, 3 gastrointerologists,etc etc etc.... and they ALL didn't want to give me the test. I had a PICC line put in and went for IV antibiotic therapy for 28 days. Didn't feel any better. My infectious disease doctor says the parasites are dead and my neurologists says.."Not so fast...you should have felt better and you may need another round of IV treatments". My rhuemaologist says I have "Chronic Lymes".

I had changed my diet a couple years ago and went off all red meats,dairy products,eggs,corn,wheat(gluten free),preservatives,artificial anything, etc..Ate foods high in antioxidants,only organic fruits,veggies and brown rice,etc.. Cut out all foods that are proflammatories,i.e. corn,white potatoes,different kinds of seasonings,etc. My pain from my arthritis got better but was in a downhill neurologically. Still feel it.

My RA Factor went higher after this round of treatment and I went Positive low ANA. Last year I lost up to 10.2% of bone mass. Now I have osteoporosis..badly. I take Boniva once per month. My endo doc put me on calcium and large doses of Vit.D. My calcium serum has been normal for several months now :)  but my PTH is high. ?? Doc can't figure this one out. It seems that my body can't absorb Vit.D well at all. Doc doesn't understand that either.

I was just diagnosed with Hashimoto's Thyroiditis which is an autoimmune disease of the thyroid and it's slowly distroying it. My antibodies were very high and it made me go Hypo. The doc put me on Synthroid. This was a couple months ago.

I had all sorts of neurological tests and I have different types of neuropathiess and still have whole body parathesia. This month I'm having a lumbar puncture done to see if there is Lymes in my brain.

People on this website told me to find a good LLMD (Lyme Literate doctor). I just found a new one (they're very hard to find). I don't see this doctor until next month.

So...I'm still suffering and taking pills I really don't like and still searching for answers.

Thanks again!

[vea0129]

This is a pretty old thread, but I'll respond anyway.  I am 39 years old and was just diagnosed with a parathyroid adenoma after suffering a severe fracture of my right leg that would not heal.  

Lori, the symptoms you are and have been experiencing are very similar to what I have gone through for many years.  The fact is, parathyroidism is NOT common, and most doctors, including endocrinologists, are NOT very familiar with it.  Any doctor who tells you that high calcium and high PTH is something to check on again in 6 months is crazy, and frankly does not know what they are doing.

In response to the person who said that high calcium levels are not dangerous, I second the response regarding the possibility of stroke.  High calcium levels damage your liver, kidneys, heart, muscles, and your brain.  It is not a wait-and-see condition.  Coupled with high pth levels, it is also incredibly bad for your bones.  Taking a calcium supplement will not help if you have elevated pth levels.  Incidentally, I had pth levels in the high range of normal, so pth will not always be an indicator.  

I got a great deal of information from parathyroid.com, and looked into the credentials of Dr. Norman to verify that he is legit.  He is.  I would say that the doctors who told you that he is "extreme" are probably stumped by your symptoms and have no idea how to treat parathyroidism.

I hope your issues have been resolved.  I would hate to think that over a year later you are still experiencing these such physical pain.

[pcbear]

when you have a stroke from your high calcuim let me know if you still think the guy is extreme.

[birdie122]

I am a 28 year old female who has been diagnosed with hyperparathyroid disease in 2007. With an UNsuccessful surgery in 2007 (meaning the general surgeon took out the WRONG gland). I subsquently ended up pregnant with hyperparathyroid disease (medical marvel being there are only 130 known cases of hyperpara. and pregnancy, not where I wanted to be with my first pregnancy). Needless to say it is 2 years later and the issue was finally resolved in Dec another surgery and this time successful.

High calcium though an issue, is not life threatening. People live with it for years (meaning sometimes 10+). That was the piece I had to get past. I was scared to death I was going to end up causing problems for myself and daughter. Long term ramification is osteoprosis.

According to my endocrine surgeon (the second surgeon) there is NO reason to ever have high PTH and high calcium the only resolution is to have the gland removed. They can sometimes give phosphates to bring the levels down but you will still have to have the culprit removed eventually.

First scan should be a sestamibi second an ultrasound of the area that is highlighted on the sestamibi. Failing that a neck exploration. Or they also did a biopsy of the tissue in the adenoma found on ultrasound (the second time around) to make sure it was the parathryoid gland. Make sure you have a specialist do this. I made the mistake of having a general surgeon do this and ended up with a misdiagnoses and the wrong gland removed. Make an appt to see and endocrinologist. I promise they will not tell you to wait and recheck as this isn't an issues that 'goes away'.

I had high PTH (over 300), high calcium (13.1), high urine calcium (over 700)

That is my 2 cents. I have lived with it for 2 years and was perfectly fine. I had a baby while having the issue and she is in excellent health.

I also have high cholestrol too.

My surgeon and endo both cautioned me about the use of parathyroid.com they told me this guy is extreme.

[hawkey30]

Sounds like your situation is a lot like mine.  I would research online to find a top endocrinologist in your area.  I finally got a referral to someone who knows what primary hyperparathyroidism is, and how to diagnose it.  Been through so many tests it's unbelieveable and hope to finally have an answer on May 27.  The process is extremely long though, so just be patient.  They usually will do 5 -6 blood tests over a month and 1/2 just to track your calcium and PTH levels as that's the only way to diagnose parathyroid disease (I have a tumor, but levels were normal and it was only found in an ultrasound originally so they go backwards and need to diagnose you first to rule out other types of tumors).  Good luck!