Is it really Parathyroid Disease?

[tbcs32]

I am a 37 year old female. In January I had a calcium count of 10.7 within a month the doc ran the test and the number was down to 9.6. My phosphorus has been 2 to 2.3. I have been experiencing painful period with faintness. muscle spasm (especially in the neck like a choking feeling, high blood pressure, acid reflux/gerd, dizziness, blurred vision, unable to sleep, crying allot, irritability, and circulation problems. In April my PTH came back at 97.8 and then the next month it was at 48. They did a 24 hour urine that came back negative. They also said they saw a small bump on my adrenal gland that they don't feel is causing any issue. The doctor says the test are false positive and they didn't need to do any further test at this time. The problem is I keep getting sicker. I feel awful. Especially around my cycle. They even sent me to a psyciatrist because the doctor says there is no way I could have all of these symptoms. The counselor says there are no mental issues she can find and sent me back to the doctor. Is it really PTH? I have an appt with Dr. Norman from parathyroid.com but we don't have insurance and it is expensive. I don't want to waste any more time. None of my other blood test have been abnormal.

[TriciaS]

I had two parathyroids removed during a total thyroidectamy just over a month ago.  My calcium level was down to 6.2 and I felt that weird neck feeling. . . not really tingly but almost like something was touching my neck.  Anyway it was weird.  I didn't have any of the other issues you are having.  However, my calcium levels were only that low for a short (3 1/2 days) period of time.  I'm only writing to let you know my experience with low calcium.  My calcium is now hovering about 8.6 - 8.8 and I feel fine!  I take calcium supplements & vitamin D.

Hope you find your answer quickly!!
Tricia

[kitty9309]

parathyroid.com is a great resource.

[Thypatient]

You mention a stand out symptoms I had:  "Especially around my cycle."  What I had attributed to bad PMS was really parathryoid disease.

Good luck as you move ahead,  but be forewarned - it's all really, really expensive (more than you could imagine).  Is there any way you can get insurance?

Take care.

[tbcs32]

They told me it would be $10,318 for the surgery (ballpark) if I had to have it. The doctor told me she thought it was PMDD (PreMenstraul Dysphoric Disorder, the worst form of PMS). The symptoms are very similar.  The insurance at my husbands work does not take affect until August 1st and it alone is very expensive at $540 a month. I have just enough in my retirement fund to almost pay for the surgery if I need to have it before then.Thank you for replying.

[tapioca11]

The average person does not walk around from day to day with serum calcium levels in the 10's.  This is considered within normal limits, but is still not "normal".  Also, it is possible for the levels to fluctuate to the normal range and you still not be healthy. With that being said, any elevated calcium level with an elevated PTH is considered hyperparathyroidism and should be treated. I can't believe you've had these positive tests and a positive scan and the doctor still has not treated you. I believe that you need to see another provider for a second opinion. Please read the below link, it will really help!
http://parathyroid.com/diagnosis.htm

[Thypatient]

Who's "'they?"  Ten thousand bucks, for me, was more like the cost of the before surgery pre-testing.  The surgery itself was much more.  I'd rethink that insurance issue.

You also need to take into consideration that if you start now, get a diagnosis and then attempt to go on the insurance, you might be hit with the 'Pre-existing' clause nonsense.  That would stall payments from your insurance for the first six months to a year.  You'd end up paying for everything during that time.  It might be cheaper in the long run to wait to get a diagnosis after being on insurance.

Maybe it's none of my business, but personally I'd still keep that one appt with the dr to see what he suspects.  If he thinks you should go further, again, I'd rethink the insurance issue.  I'd probably wait to get on it.  If you let the dr know where you're at with the money, he can probably write up this appt without making a diagnosis.

I know my surgery also involved removing my thyroid, but still - the cost was outrageous!

I don't think I'd go with the PMDD diagnosis until the other stuff is ruled out.  Especially since calcium fluctuation is involved.

[tbcs32]

I got an estimate from Norman Endocrinology. That is the "They" I was referring too. He is the doctor at Parathyroid.com. All cost have to be paid up front 10 days before the surgery. Not just to their clinic but included in that are hospital fees and such. My husband is not eligible for his insurance until August 1. Even if I see them on July 16, The surgery would not be until after then. I am hoping pre-existing will not be an issue.
Thank you.

[Thypatient]

Oh, I see.  It's good you got that info right from the source.

Wow, that price is much cheaper than mine was (gee, no wonder people complain about the state of medicine where I live).

I hope it all works out for you.  

So how are you feeling today?

[Madisons_Mommy]

Oh goodness!  You most certainly have the symptoms!  I hope you get some relief soon!  As for myself, months and months ago, I had blood work done because I was soooo exhausted!  All that came back abnormal was my calcium level, 11.2.  Since then, my mother in law was diagnosed and had surgery for hyperparathyroidism.  I did some more research and found that I was having alot of the symptoms of the "disease"....extreme fatigue, muscle aches, depression, panic attacks, etc.  I went back and had my calcium level checked again: 11.3.  My PTH was tested...92.5 and my calcium level was 10.6.  The only thing is that I didn't fast before my PTH test, but the nurse says that the number is still so high that it wouldn't have made much difference since high normal is 65.  I also tested at a time when the parathyroid hormone level is at its lowest in the body, so, the number I got may still be higher.  Anyway, I'm having an ultrasound done and seeing an ENT guy on Thursday.  I've done all kinds of research and found that high calcium level could be due to cancer.  I'm petrified.  The numbers and symptoms don't lie but I feel like I'm trying to attribute them to something else.  

[Thypatient]

Thanks for sharing.

I always try to respond the these kind of posts because I had the issue and know there's not a lot of others around who've had the same (in fact, I've never met one in person).  Information about it is only a little less sparse.

Sounds like you have a lot of the signs of this.  The ENT will be able to pull the whole picture together and steer you in the right direction.

The following is from what I vaguely remember reading about, so take it with a grain of salt:  I don't know what you've read but, from what I know, cancer in these glands is extremely rare (it's usually a benign tumor within the gland that's the issue).  But perhaps you're referring to parathyroid problems coming as a secondary issue to a cancer.  Yes, that can be true but I think a cancer in another area would present symptoms first before showing as a parathryoid problem.  Most people have already been diagnosed and are usually in treatment for another problem before this problem (through signs of elevated calcium) shows itself.  In fact, I think most secondary problems might be coming from the treatment itself - say when chemo therapy throws off the blood.

But the main point I want to make is this:  Don't scare yourself!  Let's see what the ENT has to say.

Maybe some other of our members will chime in on this to help you (and correct me; if necessary).

We will be here for you so keep us posted.

Good luck.

[tbcs32]

I went to the Parathyroid specialist. He says that by looking at my test results he wants two more fasting blood test one week apart of PTH, Ionized Calcium and Serum Calcium at the same time and a Dexagram but he says from my fluctuating numbers he doesn't believe it is Parathyroid. I was a little upset after waiting two months to see him. All these doctors say they know what it's not but none of them seem to know what wrong.
It has been seven months and I am getting tired of all the suffering.

[Madisons_Mommy]

Thank you so much for your advice!  I did see the ENT doc last week and he does think it's parathyroid disease.  I've also had some other test results come back.  I had a thyroid ultrasound done and there was a "shadow" present that might indicate a parathyroid adenoma.  I also got the results back from my 24 hour urine test and that showed very high calcium levels...in the 500's.  I'll have a sestimibi scan done on Thursday.  

I feel terrible!  I'm irritable (my hubby would say I'm just plain mean..lol), depressed, tired and my muscles hurt!  The sooner this thing is taken care of, the better!

[Thypatient]

Madisons_Mommy:  Wow!  Even though it's scary to hear this kind of news, it's at least a resolvable issue.

Good luck with the scan.  Let us know how it turns out.  For me, that one came back inconclusive but it didn't matter, the dr proceeded with the surgery anyway.

I can completely relate to feeling terrible...and irritable.  I hope it does get taken care of soon.


tbcs32:   That's a little disappointing.  Perhaps the next set of tests will reveal some answers on this or help steer you in the right direction toward something else.  I really hope so.

[medicmommy]

Food for thought...Here's how things work when they are normal...all your parathyroid glands do is control the body's calcium levels. Period. When you blood calcium gets too low, the glands release their parathyroid hormone into the blood stream, signaling your BONES (body's calcium storage) to release calcium. (This is what the ionized calcium measures). When the calcium levels are at a "happy place" again, the PTH level drops.
In hyperparathyroidism, an outside influence, usually a noncancerous tumor on one or more of the glands, begins to cause a surplus of the PTH to be released. The increased amount of extra calcium in your body begins to cause symptoms...Your body tries to get rid of it by simply releasing it from the body(urinating)...this can "regulate" it for a long time (thus, the urine test)...After a while, even those regulating systems are overwhelmed, and the calcium levels build...So, I would say, get a second opinion. It sounds to me you probably do have it as, your PTH and calcium levels should NEVER be elevated at the same time...When one is high, the other should be low..Or they should be in normal ranges...Your symptoms are certainly in line with it...By the way, if it is HPT, it's an easy fix with a specialized but brief surgery...And little "down time"...Take care...(((((((((((((((HUGZ))))))))  ~Melinda

[Thypatient]

Want to add an observation...I'm a little surprised to see the word fasting when talking about any of these tests.  I never had to do that at all.

medicmommy:  Did you?

[Madisons_Mommy]

I know you didn't ask me this directly but I never fasted.  I've had 3 blood calcium tests over the span of 8 months or so and I never fasted.  I didn't fast for the PTH test either.  I was told by my Mother in Law's surgeon (my mother in law coincidentally just had 3 of her parathyroid glands removed) that fasting for the PTH test was not necessary, and, I asked the ENT specialist the same thing and he said it didn't matter either.  

[medicmommy]

I only remember fasting for the tests that had injectable stuff...Like the bone scan and Sestamibi..Not for the regular blood tests unless you include cholesterol or glucose tolerance...does that count? LOL                              ~M

[cat86]

Thought I'd share too since I've just gone through this very recently...I had 3 blood draws, one I was required to fast, the other two I wasn't, not sure what the difference is but they all showed very similar results.  I just had the sestamibi scan done yesterday and wasn't required to fast.

[tbcs32]

I did go to Norman Parathyroid Clinic he is one of the leading parathyroid specialist in the nation. I still have to get the blood test. They are very expensive without insurance. I have the dexascan scheduled for Monday 8/4. Hopefully they will find out something soon. It is going on 8 months now. Once he has all the results they are going to review my case again. The biggest problem is my PTH and Calcium levels have not been elevated at the same time and he says that they should be. I have only had 2 high calcium counts but other then that my calcium has come back normal which he says doesn't make sense. They were 10.7 in January and 10.4 in June. I have only had one high PTH and that was 97.8 in April but otherwise it has been normal range. They do know that my vitamin D level is 15.3 as of July 7. Which is why he wants the two additional blood test.

[medicmommy]

Well you are going to the best of the best...I found his site when I was researching hypercalcemia and it's causes...it was his information that had me doing a "Mexican standoff" in my Dr's office because she was blowing me off when I said I 'd like to have a PTH test done. I refused to leave until she wrote the order. It came back at 168. So there! HA! Dr Norman's info saved my life. (I had 11 of the 16 symptoms at that point, and had a chicken-egg sized tumor removed!)
There are a few other things that cause "secondary hyperparathyroidism"  and reactive hypercalcemia as well...You may find it is one of these that is plaguing you. No worries...I see that you are between insurances right now...have you tried applying for DSHS? I don't know what their criteria is, but even poor insurance helps...also, check into the "charity care" (or whatever the Norman Clinic has to offer...) This testing is horribly expensive, and if you can get a bit of help with it, now is not the time to be proud. (This is from the person who refuses to go to the food bank and is making her daughter's school clothes! LOL ...) Hang in there...I know what it feels like to have money worries and to feel bad constantly...(((((((((((((((((HUGZ))))))))))))))  ~Melinda

[Madisons_Mommy]

I don't understand why doctors are so hesitant to test for parathyroid disease and it angers me!  When I first complained of fatigue over 8 months ago, the doc did a CBC and the only thing that came back elevated was my calcium.  I was told to retest (I was also taking cod liver oil, which has vitamin D in it) after stopping the cod liver oil.  I did and I guess it came back ok...it was a telephone consult with the nurse.  So, months later, and only after my mother in law was diagnosed with parathyroid disease, I stroll back into the doc asking for more tests.  I told him with my MIL had been through and he agreed...so, only because I was persistent, am I finally getting some answers.  

I agree with you on Dr. Norman's site.  You research hypercalcemia and you get as host of sites basically telling you you have cancer.  It's frickin' scary!  I found Dr. Norman's site and felt so much better!!  Too bad we're military and I can't have his surgery!!

[Linda1949]

Just a note to let you know I had the very same situation as you are experiencing. My rheumatologist is the one who caught my elevated calcium. My numbers weren't that high out of range but Dr.s are usually concerned with elevated levels. I had a bone scan(to check for cancer) 2 thyroid ultra sounds, a radioactive dye test and a byopsy of tumors on my thyroid. No cancer but when your thyroid is out of whack it influences your para-thyroid glands. From the time of 1st high calcium reading until I had my thyroidectomy it was almost a year and 1/2. I know how miserable you can be. I had about every symptom on hyperparathyroid Web sight except high blood pressure. In 2006 had my thyroid completely removed and 3 of my 4 para-thyroid glands. I had a very good surgeon who went the extra mile to save my one good para-thyroid gland. After surgery I was hypo-parathyroid for awhile.I 'm producing PTH. I take calcium with vitamin d and Levothyroxine. I'm feeling 100% better now. I use to sit in my recliner all day too tired to move around much. I  As for insurance, we have to pay for our own Blue Cross and Blue Shield which is suppose to take anybody regardless of pre-conditions. May be cheaper to go that route.  I know how worrisome this condition is, but luckly it can be fixed. Cancer of these glands is very rare. It seems that when your thyroid goes haywire alot of other problems can arise. I know for my self that is the case. I've got arthritis also, which prompted 2 shoulder surgeries to remove spurs, then my thyroid removal 2006  and in June of this year had my gallbladder removed. I'm in 4 communities :-)  Did I mention my hysterectomy at 38??:-)The positive side is that I can get up every morning alittle stiff but upright. I'm sure you will have a positive outcome also. I wish I had known about this sight when I was having all of my thyroid problems. You get a lot of info from this place and a lot of people praying for positive news for you. The more you read and research your condition the better. Also good to know you are not crazy to feel the way you do.Good luck to you. Take care and keep us posted.
Linda1949

[Madisons_Mommy]

OK, I'm a little worried here.  I had my sestamibi scan done this morning.  I was actually very surprised with how easy it was.  I thought I might be a tad claustrophobic with that thing almost right on top of me, but it was harmless.  Anyway, when the test was done (the 2nd time), I had a chance to glance at the image they had on their computer screen.  I saw my silhouette, but I don't *think* I saw much, if anything, lit up.  I know I'm not a doc, and my specialist did tell me that even though the bad parathyroid may not show up, it doesn't mean that I don't have hyperparathyroidism.  So, I'm worried that after all I've been through, I don't have the answer I was looking for, although the clinical signs are there, and the thryoid ultrasound showed a *shadow* of what I'm assuming, is the bad parathyroid.  What do y'all think?  The tech did say that a verbal report would be avbl today so I called the doc asking for them to get the verbal report.  

[Thypatient]

The scenario your specialist described was the one I had.  The sestamibi scan didn’t show anything but my surgeon proceeded based on the other information.  I did have one bad gland that had a tumor.

Try not to worry.  I know this is a big test but I understand it's not unique to have it come back inconclusive.

[Madisons_Mommy]

I got the results of my sestamibi scan today.  I went and picked them up so that I can take them to the doc on Wednesday.  I'm so confused.  

First of all, they didn't see anything on this scan to correlate with the nodule they saw on my thyroid ultrasound.  

"There is a subtle focus of mildly increased uptake seen approximately 1 cm below the left lobe of the thyroid."....."remains on delay image"..."could potentially represent a mild parathyroid adenoma versus technetium in the vascular space likely of the distal jugular/subclavian vein"

Then it says I could return and have oblique imaging done for further assessment.  

So, basically, as far as this test goes, I could have a mild parathyroid adenoma or, the stuff coulda just settled in a vein.  I'll see the doc on Wednesday.  I wonder what he'll want to do?  How could I have something show up on ultrasound and not on this test?  Maybe this test wasn't done correctly?  He did warn me that something may or may not show up on this test and if it didn't, it doesn't mean I don't have hyperparathyroidism.  What else would it be?  High blood calcium, high PTH level, very high urine calcium.  I thought for sure this test would clear it up..at least to the point where I didn't have to worry about having cancer anymore.  

[medicmommy]

There are many Sestamibi scans that don't show anything because they aren't "tuned "correctly. It takes an experienced radiologist to get it right nearly every time. If your calcium and PTH are elevated at the same time, you have a hyperparathyroid. Your body is trying it's best to get rid of the extra calcium (thus the high concentration in your urine).( Have kidney or gallstones yet too? Guess where calcium deposits collect?...)
All this really means is, you may need to have all of the parathyroid glands looked at during surgery, just to make sure that you aren't one of the unlucky few that has more than one...I was lucky. Even though the ultrasound showed an "inconclusive" shadow, I had a tumor that lit up like a lightbulb...My scan was very clear, with well defined edges around the thyroid, parathyroids and parotid glands...if yours is very fuzzy, it's probably a poor scan...also, in a HPT adenoma (tumor), size doesn't matter...Even a pea-sized one can cause serious problems...Hang in there...This really doesn't sound like cancer...((((((((((((((((((((((HUGZ)))))))))))))))                               ~MM

[Madisons_Mommy]

Thank you so much for those reassuring words.  I do appreciate y'all very much!  I'm so glad to have found you!  I guess I should tell you that the worries I have about cancer aren't so unfounded.  I've been a light smoker (used to be half a pack a day and it's down to 4 or 5 cigarettes a day now) on and off for 8 years (I'm 30).  I did quit smoking during my pregnancy and last Sept for 8 months (Chantix is wonderful!) until I started again a couple of months ago before closing on a house.  I am going to quit again...I've got Chantix at the pharmacy waiting for me.  

As for the scan, I did look at the images on the disc I picked up for the doc, and it's kinda fuzzy, although I can clearly see the shape of my face, neck and chest.  I'm gonna go ahead and put this to rest until I see the doc on Wed.  The operative phrase here is, I'm not a doctor.  There's a reason they get paid the big bucks..lol.  

Thanks again!

[tbcs32]

My urine calcium came back normal. They did it three times. I am ready to give up. I sleep constantly and have allot of pain. My dexascan is coming up Monday and I am praying it will show something just so I can get this over with. We have Blue Cross/Blue Shield now starting August 1st. We just got a letter in the mail saying they wouldn't cover anything we have been treated for in the last six months for 30 days so it looks like we will be paying for the blood test and scan ourselves. I have already waited since so long for the insurance to start just to find that out. I don't want to wait any longer.
The sestimibi I had was clear or so they say. Maybe these next blood test will show PTH and calcium elevated at the same time. I want so badly for this to be over.
Thank you all for your support.

[Madisons_Mommy]

I'm not sure if anybody visits the board anymore, but just in case, I thought I'd post an update.  I saw the ENT Doc last week.  The sestamibi scan did show something on the left side, while the ultrasound showed something on the ride side.  Basically, he doesn't feel comfortable operating without a good localization scan.  He didn't want to get in there and not find anything.  He said that sometimes, the parathyroids aren't where they're supposed to be.  He wanted to send me to the University in Oklahoma City to see the docs there, where they have better "toys."  That's a 2 1/2 hour drive, one way for us.  Hubby's in the military and days off are few and far between, and I have a 2 year old.  It's not ideal, but we'll do what we have to do.  We decided to go to the medical center the doc is associated with to have a repeat sestamibi done as well as repeat blood work to check where my levels are.  If he doesn't feel comfortable, still, after this scan, then off to OKC I go, I suppose.  They did it differently at this new medical center.  They went all the way up to a 4 hour scan.  I'm pretty sure I saw something lit up on the 2 hour scan, in the left side...but who knows?  I only got a peak at it..and nothing on the 4 hour.  I wish I knew what I was looking at!  lol  Anyway, in this case, I hope for elevated Ca+ and PTH levels and a good localization scan!  

[mamabear1102]

Is it possible for a 22year old female with a Calcium level of 11.4 and a PTH value of 37 to have parathyroid disease?  This elevated Calcium level was discovered when I took her to the ER with what she descripted as "the worst pain ever" the pain was in her upper lt abdomin (abdomen) and her lt flank.  Her urine did not indicate a passed kidney stone.  But a xray of her abdomin (abdomen) did show a small calcification of lt kidney.  I was certain after reading all the s/s of hyperparathyroid disease that her PTh would be elevated.  The PTH was not fasting and was drawn around 8pm.  She has had many of these s/s of 3 years, muscle aches, anxiety, heart palpitations and fatique.  I just am uncertain where to proceed.  And should I be looking for other causes?  I should mention that all her other labs were normal.  Also she took 5 tums throughout that afternoon to attempt to ease the stomach pain could that cause an elevation in calcium

[tbcs32]

I had a bad experience with Dr. Normans office. His nurse was rude and refused to answer my questions after my appt with dr polick. She told me I'd get a letter in the mail explaining their findings. The letter basically said they didn't feel I had a parathyroid tumor and that I should seek other options (take more vitamin d and calcium, that made me sicker). I was very disappointed that my $450 consultation fee would turn out like that. They took the sestimibi scan that was already done and didn't even question it. I have almost every symptom on the list.It is now Feb 23 09 (14 months into this) and I am getting sicker. Now all they know is that I have calcium kidney stones. I am ready to give up.

[Thypatient]

I'm sorry to hear you had a bad experience with going to Dr. Norman.  Especially that it didn't reveal anything for you.

You've got something brewing there, no doubt.  I so hope whatever it is, parathyroid or not, reveals itself.  One thing I've come to realize is that these issues are so difficult to detect.  I just came across an article taking about this.

Keep trying, really.  Take care.

[Thypatient]

Welcome.

Had she been taking that many Tums on previous days too.  I wouldn't think one afternoon of 5 Tums would be enough to raise calcium that much (JMT).

She does have suspicious symptoms.  But keep in mind they are ones that can be indicative of other issues too.

What usually happens with a high calcium reading like that is that they track the blood for a bit.  Did they order follow-up bloodwork?  Or a follow-up appt with a dr so he/she can do this?

Let us know how you make out.

[mitymouse]

i too have had alot of symptoms of parathyoid disease.  my calcium levels go up and down and pth levels go up and down also. i have had a stiff neck for the past 2 and a 1/2 weeks not sure if that is part of thisor not.  i have sent all my labs to the norman clinic and iam waiting for the response from him. its kinda scary because it cost so much.  hopefully i will get some good news soon.  i know how you feel..   CRAPY.  thats how i feel too.