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High PTH (parathyroid)serum level & calcium?

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?
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Avatar universal
You are so right!  These guys get right to the point...no messing around. They know what they're doing!
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Avatar universal
High calcium IS life threatening!  It's VERY dangerous as it causes a slew of other issues including hypertension, kidney stones, kidney faulure amongst other things. Parathyroid.com. Go there. Read. Learn
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Avatar universal
I hope you checked www.parathyroid.com...
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Avatar universal
I am a 31 yr old female and in jan 2010 i felt horrible all the time no energy, tired, depressed and much more. Dr. ran a bunch of tests. I had a blood calcium reading of 10.4. they transferred me to an Endocr. then had reading there of 9.4 about a month later also PTH level was .47. Also my adernal levels were a little low. Told to wait come back. Started to fel better didnt go. Then all of a sudden about middle or so of 2011 felt really bad. Complete muscle exhaustion, blood sugar always dropping way low no matter what was done. Went back to the dr. for the blood sugar problems, Calcium read 10.8, back to endo. dr. calcium read 9.9 and PTH read 108!( normal is around 77). Also Creatine level was .49 which is low.that was in Feb of 2012. They diganosed me with hypercalciumcia and parathyroidism,.Few days before surgery calcium 9.4. I had parathyroid surgery on april 4th. foumd no tumor and did biopsy all came back fine(also PTH level that day) was 52. I still feel so horrible and i have ripped a disc in my back and fractured my ankle and my chest bone decided it was gonna pop and grind randomly and its extremely painful and I did nothing to cause these problems. Torn disc was suppose to heal in about 6 months. been that way since may of 2011. I bruise so easy i ridicoulus. They dr.s told me to wait again cause they have no idea whats going on??? I was told I could have a 5th parathyroid, anyone heard of this?? I have two young kids and its getting harder everyday. I want to be healthy again. Anyone that can help give me an idea or any information would be awesome thank you cause I am at a loss and so are my dr.s I really dont want to wait till i fall apart or worse pass away. Please help
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1093351 tn?1317810854
Just recently started the Parathyroid Tour. Last month ended up in Urgent Care with racing heart rate and severe nausea & leg pain.  (17 yrs of symptoms)  Calcium was 10.4. Was told to have PCP look into parathyroid disease.

2 days later, PCP labs show calcium 9.5 and PTH 69.10.

this week. 6 weeks later, Endocrinologists has no answers and mentioned a handful of red flags that Dr Norman in Tampa mentions on www.parathyroid.com. Calcium is 8.9, PTH 40, phosphorus 2.8, magnesium 1.9, vitamin D 46, waiting on Vitamin D125..., ionized calcium 4.97.

I;ve already lost one kidney that was backing up.  It was a rare birth defect.  Left kidney was smaller, deformed and on top my right leg.  When it swelled, it pressed against right ureter.....so it was removed.

Any thoughts?

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Avatar universal
I recently had parathyroid surgery done because of high calcium and PTH levels and they did find and remove an adenoma. My lab work also showed a positive ANA, positive Anti-SS-B/La but all other lab work normal.  Do you feel that the leaching of calcium from your bones, predestined you for RA?
I will be seeing my doctor soon to address these results but curious to know if my hyperparathyroid disease had any influence on my abnormal lab results or it has set me up some how for a rheumatology autoimmune disease.
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1420744 tn?1282402608
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.
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Avatar universal
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!

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Avatar universal
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.

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Avatar universal
when you have a stroke from your high calcuim let me know if you still think the guy is extreme.
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Avatar universal
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.
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Avatar universal
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!
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469901 tn?1276563623
While I know a bit about arthritis, I am not an expert on it nor on parathyroid disease.  I think a 6 month check up seems long, but how elevated were your levels?  I am glad you are pushing the doctors and championing your cause - you are your best advocate!  Did any of the doctors say you had parathyroid disease?  Continue with what you are doing and make sure they check you thoroughly to determine whether or not you have it.  If not, ask what the other possibilities are and what the next step in the diagnostic process is.  Prodding questions will keep the momentum going.
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Avatar universal
You seem to know a lot re: parathyroid disease and arthritis; I started to see a rheumatologist in Jan. 09, I just called about one month ago to get an unscheduled appt. as my pain was increasing.  The doctor said that she thought that was unlikely and wanted to run routine blood work.
Blood work came back as high calcium; she wanted a repeat. This time however she asked for a PTH as well. Both came back as high.  I researched parathyroid disease on the internet, she sent me a letter saying we should wait and check in 6 months!  I then called my family doctor who said to wait 2 months to recheck my bloodwork.  What am I waiting for?? a slow death?  I called my family doctor back and insisted on getting an appt. with an endocrinologist. Most of what I have read on line is that most Endos have never seen a patient with a parathyroid tumor. What are the odds of getting some serious help?
Anybody with any advice would be appreciated.
salfra78
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Avatar universal
Sorry it took me so long to check this forum again - i couldn't find the web page.
My rheumy is Joseph Markenson - yes-  at special surgery.  he's a wonderful doctor - great diagnostician.  Paget also has a good reputation.  i thought arthritis could be diagnosed by a blood test - you either have a rheumatoid factor or you don't.

fibromyalgia is a totally different beast though.  I don't know much about that.  a cousin has it and was bed-ridden for months until she went on Lyrica.  now she is doing much better.

For endocronologists - i've seen Philip Felig (own office - affiliated with lenox Hill) and David Zackson (NY Hospital).  They are considered the best in NY - along with John Belsekian at Columbia Presp.(he wouldn't take me as a patient - i'm apparently too young!)

Good luck - i hope you feel better soon!
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Avatar universal
Sorry it took so long to get back to you. Been really in the dumps.

I went into Cornell by emergency department. I took my elderly mother to her doctor and I got very sick. They checked me in the ER and admitted me. I had no doctor there except for the house doctor and her team.

Now I have one rheumy saying I have RA and two that say I don't. I'm a mess and in much pain 24/7. You mentioned HSS. Is that Hospital for Special Surgery? I live in NJ and need a good rheumy to tell me what's going on with me. I know I have arthritis in all my joints but the docs aren't telling me what kind of arthritis. Been told I have fibromyalgia and they said they haven't seen such a bad case of it. Going to get emg's and ssep beginning of Jan. I also have ulcerative colitis but I don't have diarreha. Neurologist doesn't like my gait. Since I started taking Vit.D, my parathyroid and calcium levels in my blood are going up. High. But the endo doesn't think it's primary parathyroidism. What you said about the D verses my PTH level makes a lot of sense.

Could use a recommendation to a good rhuemy and endocronologist.

Thanks!
Lori
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Avatar universal
Hi Lori
I'm going through the same thing right now.  It sounds like you have secondary because your Vitamin D level was so low but medicine made your PTH level go back to normal.   if it was primary - your PTH level would stay elevated regardless.
The bone density problems are completely explained by the hyperparathyroid also.  Basically your body is sucking calcium from your bones.  I've been told that once the problem is treated, the osteoporosis is completely reversable.
I'm curious who you've seen at Cornell. I've also gotten two conflicting reports from two different top endocrinologists.  one saying it's primary, one saying it's secondary.  one saying surgery, one saying medication.  It's incredibly frustrating.
I also have a wonderful Rheumatologist that I've been seeing for ages at HSS.
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Avatar universal
Hi - I was just reading this and thought you should know that there is a good website regarding parathyroid disease.  I think it sounds like you have it.  

Go to www.parathyroid.com.  I am trying to figure out if I have it.  

Good luck!
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469901 tn?1276563623
I am sorry if I scared you with the heavy metal poisoning and leukemia questions.  I did some symptom based research on your post of the 29th and that brought those up so I asked about it.  Not my brightest moment.  
You wrote that your PTH is high.  That can cause changes in your calcium and vitamin D level.  
You also wrote that you had full work ups.  Was that before or after you were diagnosed with RA?  Sometimes you have more than 1 thing wrong and that makes diagnosis harder.  What tests were involved in the full work ups?  Do you have any of your lab reports?  
I know it gets frustrating going from doc to doc, but sometimes that is what you have to do in order to get a dx.  There has got to be a doc out there who can put all the pieces of the puzzle together for you.  I will keep you in my thoughts and prayers.
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Avatar universal
I had a complete workup at Cornell Univ.Hospital in NYC in June and then was in a Big teaching hospital in NJ just after that. They didn't find anything. Now I'm just going to doc to doc. Regarding possible cancer, they are watching something odd in my left kidney. Going for another ultrasound this month. As for possible leukemia, what would be out of sorts in my blood work for that?  I don't know how I would possibly have heavy metal poisoning or other toxic substance. I do have a positive RA Factor.

Just got some blood tests back. My Vitamin D was 10.4, then three weeks later went down to 8.5. (ref: range- 36-100). EXTREMELY low!!  Doc just put me on 50,000 IU tablet of vit.D 1 time per week. But that wouldn't explain everything. My calcium serum was a bit high and this week for the first time in about a year, my parathyroid (PTH) was normal. HUH? I have no idea how that happened! I'll be retaking that.

Thanks for your response and please let me know what to look out for or test for possible leukemia. I heal slowly and get black and blue a lot. The doc today said I look so very pale today.
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469901 tn?1276563623
I can tell you are scared and I think that your reaction is normal.  I would be scared too.  I am sure that they have, but I have to ask anyway, have your docs tested you for heavy metal poisoning?  Or any other toxic substances?  I hate to even mention it, but what about leukemia or any form of cancer, have they screened you for that?  I agree that the doctors need to look at the whole picture of your symptoms and it may be time to get to a new doctor and/or have a melt down in the office of one you are already seeing.  
I see you are in NJ.  Can you get to one of the medical schools up there?  I swear by them as they seem to be more open to researching ailments and have a built in network of specialists to refer you to.  
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Avatar universal
Thanks so much for your caring. I'm on my 3rd rhuemy. The second one said I have RA. This new one said I don't but I DO have something. He hadn't seen the report of the bone scan when he said I don't have RA. I faxed it to him and he wants to see me this week. I have no idea what he's going to say and I'm scared. I'm loosing hair, still getting internal vibrations in my body that no one can see, started throwing up my food, heat coming out of my skin while feeling chills inside, feeling clammy, still getting sharp pins/needles with intense stinging all over body...worse in hands and feet. My feet, hands and nose get so cold when my body is warm. I run no fever. My ferritin is 13 and the docs says "don't worry about it". Went to a neurologist who said he can't help me. Got myself in to a neuroscience place and got a clinical workup. They are giving me an emg in both arms and legs and a SSEP test. My spine is curving and I'm getting electrical pulses from it. Bones hurt. My muscles hurt. My PT (bleeding time) is high. Takes longer to clot. Passed out a couple times. Now my gums have started to swell and bleed. My teeth have been getting weak and are starting to rot. I brush my teeth after each meal and floss...so I don't understand. I've had to have several pulled and need another one done. My 3rd endo doc is still working me up. But ALL the other docs just want to put me on anti depressants. Now I'm having some trouble breathing here and there. I can't get a darn doctor to see me more than 10 min. in their office. They say I'm "complicated" and they only want to deal with one symptom at a time. I tell them they should know ALL my symtoms and put the dots together. Oh...my liver enzymes are up and I have high cholesterol. My cardiologist wants to put me on Lipitor which is hard on the liver. It will raise the enzyme numbers more. There is no reason why my cholesterol should be high. I'm very thin and I don't eat any fats. None!  I'm so darn weak. My 24hr.urine phosphorus was very low 4 months ago and the doc never followed up on it. Could that be from the kidneys? I'm scared. By the way, I'm 57yrs.old. Wondering if I'll see next spring.
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469901 tn?1276563623
It sounds like it may be time to see another doctor.  You mention 2 endos but do you have a rheumatologist?  If not it is time to get one if for no other reason than the bone scan results.  Something is not right and your docs are at a loss.  If they are not reaching for their books or reaching out to specialists you will have to find someone who either is able to dx you or willing to reach for the help they need to do so.
Please keep us posted and if someone here has experience with your symptoms I hope they will write soon.
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1 Comments
Its a Parathyroid Tumor!  I had the very same symptoms and my Doctors just kept saying blood test are normal, Take viti D. Had surgery to take out my goiter and he found and parathyroid tumor.  He said it was Huge!  Go to Parathyroid Clinic in Tampa.  Good Luck and God Bless!
Avatar universal
It's been awile, but I'm back. My serum PTH and my serum Calicium are still high. Went for a nuclear scan and a CT with contrast looking for a bad parathyroid. Test didn't find anything. Now my Vitamin D is quite LOW. My endo doc says I don't have primary parathyroidism but my other endo doc said I do. ??  Also, my 24hr. urine calcium (which I took twice) keeps coming out VERY low normal. Everyday I have palpitations. Took a nuclear whole body bone scan a couple weeks ago. Came out that every joint in my body is degenerative. As I type, I'm losing even more bone density. Have pins & needles all over my body and it gets so bad that it stings so much. Painful. My skin doesn't feel the same. I constantly get heat sensations coming out of my skin. It gets so hot as if I were sun burned. But I don't run fever. Then there's the muscle spasms all over. Docs can't figure me out.

Anyone have any clues? I don't know what to do anymore.

Thanks
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