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Thyroid Disorders Community
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Avatar universal

Parathyroid and neck pain

I have a mild Hyperparathyroidism; I've been getting occassional neck pain (side of neck) which seems to happen after taking large doses of VitD.  Has anyone else experienced this; is it a sign of a possible tumor (Primary Hyperpara)?
23 Responses
Avatar universal
Post ALL of your lab results: PTH, Calcium (ionized and serum)

I think I've spoken to you before. You have Hasimoto's, too, right?? Any TGab or TPOab?

Low D, common with Hashi, can make the PTH and calcium spike slightly, which would look like a mild case of parathyroid disease, however, once the D levels are up, then the PTH and calcium should return to normal. I should know. This is EXACTLY what happened with me (PTH spiked to 71 and calcium spiked to 10.4). Once my D levels came up, my calcium was consistently 9.6 and PTH a 30-32.

And, yes, I did get neck pain after taking the 50,000 IU vitamin D pills my endo gave me. I have no idea why, but it felt like my neck was broken. I had to start with 1,000 IU pills daily and work up to 4,000 IU daily.

There is no such thing as mild parathyroid disease. You have it or you don't.  If you indeed have it, then the only choice is removal of the bad gland, or you will have severe bone loss, kidney stones, etc.... Also, if you do have PT disease, then D will make your disease worse, not better. In parathyroid disease, more D means more calcium is absorbed in bloodstream, meaning more gastro issues and stones.

:) Tamra
Avatar universal
Hi Tamra, I don't have Hashi's; negative thyroid antibodies and TSH 2.5.
Blood calc range 9.6 to 10.3 over the past year; calc measured 9.6 w/ PTH 73.
I also have a low Potassium level, so the fluctuating calcium levels may be due to possible electolyte imbalance.
Avatar universal
Hmmmm. PTH is slightly high. 9.6 is a good level for calcium. How many calcium tests have you had? How many times in the ten range?

As far as thyroid is concerned, TSH might be high end, but I would need to see the FT3/FT4 thyroid tests as well. Do you have any thyroid nodules or swelling? A thyroid ultrasound?

Many things can cause the low D. Have you been tested for Celiac disease? Many Celiacs have low D, and the low D, in turn can cause the PTH to spike.

What are your other symptoms? This could be a mild parathyroid case, but mild will always get worse. Have you been to www.parathyroid.com   ?
:) Tamra
Avatar universal
Celiac tested negative.  Calcium tested in the 10's three times since October 2009 (past 7 mths) and twice in mid 9s.
Avatar universal
I also have low Ferritin, not sure if that's related to PTH...
Avatar universal
I don't know about parathyroid, but many Hashis I know have low ferritin. I still think you should get your FT3/FT4 levels checked to determine your current thyroid hormone levels. Also, a repeat Hashimoto's antibody test. Some docs only give one. Get the TGab and TPOab tests. Sometimes, they come back negative but the next week, they'll be positive. How about a thyroid ultrasound? I highly recommend one. If your thyroid comes back swollen or multi-nodular, then this is a good sign of thyroid disease. Ten percent of patients with Hashi will have a negative antibody test, so the ultrasound can also be used as diagnosis.

My calcium was a 10.0, 10.1 and a 10.4 plus several in the nines. My PTH spiked to a 71. I ended up not having a parathyroid problem, but Hashimoto's. Low D caused the PTH levels to jump.

:) Tamra
Avatar universal
BTW - For many people, TSH over a 2.0 is considered hypo and requires further study. Mine never went above a 2.74. :) Tamra
1539238 tn?1292865243
Please, all of you read the site: parathyroid.com  Vitamin D is decreased when you have a parathyroid adenoma due to over production of calcium in the body.  The body protects itself from absorbing too much calcium in the digestive system by lowering the Vitamin D level.  

Any doctor who tells you that by increasing Vitamin D, that will solve your calcium and PTH problems should go back to school according to my own research.

The ONLY cure is having the parathyroid tumor removed. Period, end of story.  If they say they cant see it, but your labs say otherwise, (high PTH and high calcium, plus low Vit. D) the person doing the tests are inexperienced or do not have the proper scanning equipment.  Need proof, look at all the tumors removed by Dr. Norman on his website of people who had negative scans and were told to increase vitamin D to solve it....will blow your mind.

Calcium and PTH levels change every day, and just because one test is in the normal range, 10.2 or lower, doesn't mean a thing.  It is just like blood pressure or insulin levels, they change constantly depending on the time of day and what you are doing or eating to affect it...

My calcium has been 10.4, 10.1, and 10.4, PTH was 97, 88, and 92, my vitamin D level is only 11.  Again, this is the body's own protective defenses kicking in that lowers my vitamin D...LOW VIT> D does NOT cause high calcium and high PTH...only one thing does...hyperparathyroidism.  Taking vitamin D to raise levels may do more harm than good at this point for me by causing too much absorption of calcium in the gut.  After seeing my test results, my primary care Dr. at the VA medical center asks me, "are you being treated for your low vitamin D?" I felt like pulling my hair out because obviously I have done more study on this topic than she has.  

Its all on the internet and it is not rocket science, but if I had not researched it for myself, I most likely would be much worse off at this point.  I have been sick for more than ten years, diagnosed with everything from fibromyalgia, chronic fatigue, depression IBS, PTSD, somatiform pain disorder, acid, gas, bloating, and finally bipolar disorder with mania and psychosis...RIGHT>...those pshychatric drugs nearly killed me three times!  

I kept telling them something is cutting off my airway and I feel like something is pressing on my esophagus.,

Every time they checked my oxygen level it was high.  (100%) (Usually when in the ER due to horrible side effects from bipolar drugs and lithium)..they said impossible, then..they said that feeling in my throat was caused by anxiety and put me on Valium for that, and neurotin and clonapin for the muscle spasms...  which caused SEVERE edema.  

I no longer take ANY of those drugs, strongly against the doctors advice, I detoxed myself from all of it, at all and feel much better for it.   THEY NEVER CHECKED MY PTH until I went in and ask for it!   I had kept a waking temprature log every day for a week, while having night sweats and hot flashes often, even then when I felt most hot, my body temp was only 96, sometimes waking temps were 95.7.  This was the proof I needed to suggest thyroid problems, and I finally got them to run them.  Now I am pissed they didnt think of it ealier, I have lost everything; job, home, credit, all ****.  Now I cant get them to give me anything for the bone pain as they say my condition is "MILD."

I have not had surgery yet, as I can no longer work, and must use the VA for all my medical care.  My primary care doctor there just told me I couldnt be having that much bone pain because my hyperparathyroidism is "MILD."  I say she is full of it.  

My symptoms are severe and I want it resolved asap!  I am so sick of being sick and tired all the time!

My bone scan says I have osteopenia in my hips and legs;

The ultrasound of my neck says I have two nodules, upper poles, left and right.  The right lobe contains a cystic nodule in its upper pole measuring .04 x .03 x .04 cm, and similar sized nodule is seen at the adjacent pole and appears to be more solid.  The left lobe contains an irregular hypoechoic solid nodule in its upper pole measuring 0.9 x .0.5 x  0.8   No parathyroids are seen.  A mildly prominent left jugular chain lymph node measures 1.2 x .0.6 x 0.8 cm.  

They did Sestamibi scans on me Friday, then they sent me to nuclear medicine for four more hours of "spectra scans, and then a cat scan of my neck.  I have no results yet and am worried out of my mind that at least one of those nodules and lymph nodes are cancer.  

Please reply if anyone can help ease my mind or know what to expect.  One other troubling blood test result is the Egfr:  once it was 90.5 (10/27/2010) and another time it was 77.6 on 11/05/2010)  I have no idea what this means but it seems that it is not good regarding the kidney function.  Is this an indicator of cancer?

Thanks in advance,
Lori

Avatar universal
Hi,
I noticed the date on this thread is quite old...
That aside, I can vouch for parathyroid.com. -It literally saved my life! Over a 4 year period I had experienced increasing problems with joint, muscle, and bone pain, headaches, heartburn, kidney stones (7 in 2 years!) gut issues (mostly constipation), hot flashes, palpitations, period irregularities, etc. In a nutshell, I had 11 of the 18 symptoms when a stuck kidney stone put me in the hospital. It was then they found the elevated calcium (by the way, PTH and calcium levels should either be right in the middle, or at opposite ends of the ranges. The calcium should NEVER be high (or normal) at the same time the PTH is high. Even if the calcium level is "in range" and the PTH is high, it is NOT normal!
I literally had a Mexican standoff with my GP because she wanted to fool around doing "wait and see" tests other than the PTH level and I refused to leave her office until it was ordered. My PTH came back as 75 and my calcium was 10.9. By the time I had surgery (2 months later) I high very high blood pressure, a resting heart rate of 120/min, and I had to be put on beta blockers so I didn't stroke out. this is not something to fool around with and if ANY Dr says "wait and see" -find another! By the way, my sestamibi scan showed a chicken-egg sized parathyroid tumor that was burrowing under my collarbone. The surgery was 30 mins, and withing an hour afterwards (I'm not kidding) I could already feel the difference. And I have not had an unexplained headache or heartburn since then. ~MM
1539238 tn?1292865243
Thank you so much for validating my point about the high calcium high PTH and low D....

If I had not researched it, I am sure that I would still be given the wrong advice by these doctors and done exactly what they told me to without question, worsening my pain and symptoms yet again.

Why do doctors pretend to know what they are talking about when they obviously do not have a freaking clue or they are basing what they know on what they learned in med school twenty freaking years ago?

This Has cost me my life doing it their way and 'trusting them."  They don't know jack!  Personally, I think there is no such condition as fibromyalgia and chonic fatigue and its just a cop out diagnosis to keep them in the business of cashing in on my pain and symptoms thru unnessary surgeries, tests, and proceedures, not to mention the BIG PHARMA bonuses they get from dolling out drugs that havent been approved thru the FDA by way of "free samples!"

I went back to school in 2005 for Massage Therapy, and after taking anatomy physiology and pathology, They can no longer give me the ole snow job of "its all in your head" and depression hurts, so here take this, honey, you'll be fine."  BS.  BS... BS...done with the BS.  

I have been labeled with every health condition you can think of that there is not a test to confirm the diagnosis, now anywhere I go, I am looked at as a mental patient and I am sick of it.

Now I feel vindicated that I finally have a diagnosis that supports what is really going on with my body, but I cant get the VA to do anything about it now, (such as surgery or managing my pain) and while I had EXcellent insurance benefits, they were misused in the most egregious ways.  They should all be locked up for fraud.

Sick and tired of being sick and tired,
Lori
Avatar universal
Pardon me if this sounds a bit nosy, but why can't the VA do something about your condition? I would inform your Dr that yes, it CAN create that much bone pain as the calcium is currently being ripped out of your bones as your PTH climbs higher (it's VERY demanding!) I was looked at as a "nut job" too -until I proved them all wrong! (MWA HA HA!)
Are you to the point that you are urinating every 30 mins? Or have such slow bowels that you only go once every 3-5 days? Or have a resting heart rate over 100/min? For me, these were the warning signs that I was going to have an "event" of some sort that was going to be very bad and very expensive if something wasn't done soon.
If you can (and you haven't) at least get your Dr to order a Sestamibi scan and a bone density scan. The bone density scan should remove doubts about bone cancer, and if done properly, the mibi scan will show the tumor causing the problem. In the health care field, if your condition suddenly becomes "interesting" (like a parathyroid tumor), then you get better service because you become the token guinea pig.
Also, if you haven't check out your local "learning" hospital (usually a university hospital) . This was where I found my surgeon (you don't want just anyone to remove the tumor) who was accomplished at this particular surgery.
Hang in there. I know you're not crazy -and its difficult to think positively when your brain is congested with calcium! Please keep posting -I'd like to know how things work out for you...((((((HUGZ))))))~MM
1539238 tn?1292865243
Thanks for the HUG, I really...needed that!

I am being referred to surgical oncology....that cant be good.  Sneaky suspicion that the parathyroid is the least of my problems at this point.

My ultrasound said I have a nodule, (two really left and right, but the right says cystic) left upper pole, irregular borders, around a a cm...hypeochoic, solid nodule, with the left jugular chain of prominent lymph nodes measuring 1.5 cm.  

The endo called and said, well its a small nodule and nodes can be swollen from a virus or infection....well I don't have a virus or infection, so guess that only means one thing....CAnCer....  I meet with the oncology surgeon next Wednesday.

Yea, he (the endo) also said my high PTH and calcium may be from the familial gene defect too, and I said, well if I had that I wouldnt be having symptoms right...he said, well, right....That test came back negative, I could have saved the money on that one...geez.

He wanted to put me on high doses of D today...I said no unless you can show me a study where there is proof this is not more harmful to me than not taking it.....I heard crickets....um,...um....um,......Take it up with the oncologists he said.

Check my profile page, I wrote more on what they said about bone and sestambi scan.

Thanks, I'll keep you updated.

Lori  

((((((( HUGZ back to YOu ))))))))

And try to have a Merry Christmas, If I can get off the couch tomorrow, I am going shopping for the first time....have to get it done in one day.
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