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Is it really Parathyroid Disease?

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.
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Avatar universal
6 years ago I had surgery and two parathyroid glands removed.  The Seattle surgeon after surgery made the comment "I hope I got the right ones" which no one wants to hear.  My levels never went down but my husband and I were responsible for the care of both of our Moms so I didn't take care of me as I assumed the surgery handled my issues.  Since them, two kidney stone surgeries, passing many stones and most recently 12 stones at one time plus severe osteoporosis kicked me into a reality check.  I chose the best Endocrine surgeon in my area of Arizona. I had every test humanly possible to determine where the disease was including the final venous sampling which said it was on the right side. Brutal test....24k.  My surgeon was in surgery on me for over 4 hours and the surgery failed.  He took my right thyroid assuming the right parathyroid was in there but it was negative.  Lots of tissue was taken as well, all negative.  Then the left side appeared swollen so the left parathyroid was removed leaving me with one parathyroid somewhere in my body that none of these tests found.  I have seen my endo and many other doctors and there are two thoughts.  It could be in my chest or behind my ear or the diagnosis might have been wrong which I can't even wrap my head around.  I have sent all records to the Normal Parathyroid Institute for their opinion and if they feel another surgery will resolve the problem I will go to Tampa next year.  This surgery was brutal on my body and my voice is only half there after a month.  I am seeking information and suggestions.  Thank you in advance if anyone has any thoughts.  cook.***@**** is my email.  Thank you.
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Avatar universal
I'm having my surgery next month in March. On April 15. 2013 I fell down four steps onto a concrete flour. I broke my left foot, humorous bone and my shoulder. When surgeon was fixing up shoulder it just crumbled. He had to put in a rod with forty screws. I've had six months of rehab, massage. Anyway, I'm in pain everyday. Can't move my arm higher than my face. Hard to wash and comb my hair etc. Rest of body healed fast. I'm just wondering how long I've had this tumor. May be that's why it shattered and just not broke. I have all the other systems too.
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Avatar universal
I have the same symptoms, all worsing around my cycle. My doctor did all the same test... blood work and 24 hour urine test. My vitamin D level was at 15 and my calcium was 8, my PTH 86.7. I was concerned that I might have parathyroidism but the specialist said he believes the problem is due to the low vitamin D levels been low. He put me on 50,000 IU weekly for the next three months and i will repeat the same blood test to see if my PTH levels are then normal. I do have to say although there are many factors and illnesses out there that can cause the same symptoms. taking the high dose of vitamin D has made me feel so much better. You might want to consider getting your vitamin D levels.

concern
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Avatar universal
i have had my bloods done i have high levels of calcium in my blood my vitamin d is low i feel very weak cramps in my legs and feet im going to get more test done next friday do you think its parathyroids or could it be something else
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Avatar universal
To me the hardest part of this whole thing is not being able to find anyone who can say one way or the other, what the problem is. I have been trying for almost a year to get this fixed. First endo I went to kept saying it's not hyperparathyroidism. Then said maybe it was after running more tests. Then she did an x ray found kidney stones and said it was. I then had a paratryroidectamy. only my calcium was still high and so was my pth, but only once next time my pth was high and my calcium was nromal. My calcium goes up and down, usually it's normal, but my pth is always high. My vitamin D goes up and down but is usually normal. I have had two surgeries so far to remove kidney stones through the back, and if they don't do something soon, I'll have another surgery in a few months. I  still have kidney stones in my left kidney, but it's in my abdomen and the surgeon says until they fix what's causing it he'll not risk doing that surgery as it's complicated. I  have osteoporosis and constant pain in my neck, back, shoulders and also pain in other bones in my body. I take prilocet for my stomache. I also have more of the symptoms probably most of them. I did find a local surgeon who seems to know what she is doing and hopefully she'll decide to operate and remove the bad parathyroid. My sestamibi scan the first time showed it was on the right side, only the surgeon removed the left one instead. the second sestamibi scan showed nothing. I have had so many tests an 4 surgeries, been hospitalized 2 times for infections from the surgeries in the last 8 months. I can really understand how people on here feel, it's the most frustrating thing I've even been through, and it's not over yet. I hope some of you have more luck than I"ve had so far.. I think finding a doctor who knows anything at all is the hard part. My second endo said I had low normal vitamin d, he had to be the biggest idiot I've encountered yet.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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 and her lt flank.  Her urine did not indicate a passed kidney stone.  But a xray of her abdomin 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
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Avatar universal
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!  
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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
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Avatar universal
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.  
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Avatar universal
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.
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Avatar universal
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.  
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Avatar universal
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
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Avatar universal
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!!
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Avatar universal
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
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Avatar universal
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.
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572927 tn?1217366181
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.
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Avatar universal
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
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Avatar universal
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.  
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