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?

[txsilver]

Hi Lori,  What a month you are having!  RA and now this too.  I googled high PTH and got information overload.  I suggest you call your doctors office and find out what the next step is going to be, when you can take it and whether or not you need a referal to a specialist.  

[Lori707]

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

[txsilver]

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.

[Lori707]

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.

[txsilver]

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.  

[Lori707]

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.

[txsilver]

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.

[FerrisWheel]

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!

[Lalalje]

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.

[Lori707]

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

[Lalalje]

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!

[salfra78]

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

[txsilver]

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.

[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!

[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.

[pcbear]

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