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Parathyroid and neck pain
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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)?
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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
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Avatar_n_tn
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.
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Avatar_f_tn
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
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Avatar_n_tn
Celiac tested negative.  Calcium tested in the 10's three times since October 2009 (past 7 mths) and twice in mid 9s.
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I also have low Ferritin, not sure if that's related to PTH...
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Avatar_f_tn
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
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BTW - For many people, TSH over a 2.0 is considered hypo and requires further study. Mine never went above a 2.74. :) Tamra
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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

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Avatar_f_tn
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
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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
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Avatar_f_tn
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
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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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Avatar_f_tn
I wonder if the "familial gene defect" he's referring to is MENS syndrome...it can cause hyperparathyroidism, elevated calcium, thyroid nodules (sometimes cancer), and often affects other endocrine glands like the pancreas (diabetes). If so, this is caused by a pituitary issue...
My guess is, the Dr you are currently seeing doesn't have a great depth of knowledge in the parathyroid/ endocrine area -and he's passing you on to someone who does. This is a good thing as you certainly don't want someone doing the guessing game now! When I had my parathyroid tumor, I didn't have swollen nodes or nodules on my thyroid, so I can't say if your thyroid problem is causing the parathyroid/calcium/PTH levels or the other way around. I'll cross my fingers and say prayers for you in hopes that this turns out to be something minor and annoying! I'll look at your profile page to see details...In the mean time, please try not to worry. -Enjoy your holidays and the beauty in the world...((((((((HUGZ)))))))~Melinda
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Avatar_m_tn
I read all your comments with interest; I had a Parathyroidectomy two weeks ago.  There is so much ignorance out there amongst the medics. My one thread was through Parathyroid.com  - thankyou Dr. Norman!  I live in the u.k.  I have been told that Parathyroidism is rare.  I believe that it is common and remains the biggest undiagnosed scandle in medical history.
G.P.'s are ignorant of it's  symptoms which can be so much like menopause; depression...M.E.?
how many people out there are being incorrectly treated year after year for the simple sake of a blood test?  I even had a young doctor say to me in hospital (the John Radcliffe, Oxford) that he was going to take bloods to check my Parathyroid Hormone level after surgery and would get them back to me in a couple of hours.  When I told him it would take at least 10 days - he had the cheek to ask me what did I know?
How can you counter this arrogance, this inability to think about the health of a person in a wholistic manner; to question why is it that this person has all these symptoms - is turning up at  surgery with depression, constipation back ache, kidney stones, yellowing eyes (vit. D deficiency?) extreme fatigue etc. etc.  I was so lucky to have a doctor, who on a whim after talking to a locum took that blood test.  The frightening result was being instantly whipped into an acute ward and onto a drip for 3 days having had a diagnosis of hypercalcaemia and extreme dehyration.  Both of which I was totally unaware of because I had become so used to feeling that way!
I hope that the rest of you are on your way to recovery or surgery and wish you all well
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Avatar_f_tn
I have hyperparathyroidism and severe neck symptoms, even TIA have been suggested. No one doctor here will do sestamibi scan or parathyroidectomy to me, because my disease is mild. That is true. It took a long time before I got the diagnosis. I should take Dolan for the neck pain and weakness. I think it makes me nervous and causes tremor which  symptoms I already had before the medicine.

Doctors have suggestedted many diagnoses, not very seriously. They don't want to clear up the situation.

Polymyalgia, vasculitis myasthenia gravis, TIA, otosclerosis ??
They say that the neck weakness does not result from hyperparathyroidism. What is the cause for it?
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Avatar_m_tn
I found Parathyroid.com doing a browser search of my symptoms.  My OLD GP did blood work in June 2011 and my calcium was high.  A separate doctors brought this to my attention in September 2011 and asked my if my GP had mentioned it too me.  This doctor ran blood work that indicated Hoshimoto's.  Found new GP and as he ran many tests to try to determine the reason for my pain, fatigue, palpitations, etc., I asked him to check my PTH (because of all I had read on Parathyroid.com).  The PTH came back elevated and he referred me to an Endocrinologist.  Through several blood tests my calcium level went up and down.  Blood work drawn by my Rheumetologist found very low Vitamin D.  This is another confirmation of Hyperparathyroidism.  When I go to the Endo I am going to insist on either an ultrasound or MRI to determine if I have a tumor on my parathyroid.  I will not settle for "treatment" until this possibility has been ruled out.
For those of you dealing with these issues, if you are able, insist that your doctor do all the tests necessary to rule out a possible tumor.  As I have learned, if you have a tumor, it will not go away on it's own.  Wouldn't you rather have your symptoms go away along with a tumor, than continue to deal with symptoms for ...???? months or even years?
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Do you have primary hyperparathyroidism? You should have a Sestamibi scan.  MRI is not reliable, it did not reveal my parathyroids at all.
I have the problem that here it is not possible to have a Sestamibi scan if one has mild hyperparathyroidism. It is only for those who will have parathyroid surgical operation. Others, with mild hyperparathyroidism, are only controlled at 6 months' intervals to reveal possible high enough blood calcium.
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1918828_tn?1328126758
Hi... I know this is a very old post but I CRIED when I read your comments... Almost word for word, I am experiencing what you have. I can only hope by now you are doing much better and have gotten answers...

I don't even have the energy anymore to write all I have been through for about 6 years now, but it has rapidly accelerated in the past two and I can't afford to bounce from doctor to doctor anymore...

If you have ever been dx with a mental illness you will NEVER get the care you need for a physical problem. I have completely lost hope and believe like you, that there are no such things a FIB or CFS...

NEVER NEVER NEVER tell any doc that you are on psych meds or have been dx with any brain ailment... It's a death sentence!!!

If you do get this post and are able to answer, I would love to chat...

Thank you...
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Avatar_f_tn
After a several years of symptoms including multiple fx, a kidney stone, etc, and suspecting I had hyperparathyroidism d/t lab results (my Ca & Parathormone both upper normal), I finally convinced my dov to send me to an Endo doc.  He repeated labs and a 24hr urine which came back showing hypercalciuria.  He is putting me on HCTZ, a calcium sparing diuretic, for 2 mos then will reck my Ca levels.  He feels I have "mild hyperparathyroidism.  (I wondered if that is like being a little pg?).  In reading all these posts, I was just wondering if anyone has heard of this treatment, or any results from it?
Thanks!  Ann
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Avatar_f_tn
My neck pain has been diagnosed cervical dystonia. Acording to my endo, I may have secondary hyperparathyroidism and not primary, although I probably have parathyroid hyperplasia. I ordered and paid a sestamibi scanning by myself.

I was put on a high dose of vitamin D to see whether my vit. D level could become higher. It is about 60 nmol/L. When I first time took 100 mcgrams vit D  I felt worse and droppped it to 75 mcg. Next night I got atrial fibrillation, which I still have. Raising vit. D dose previously from 25 to 50 mcg first elevated the level to 69 nmol/L but the dropped to 39 (this may be for safe of my organs).

It was the year 2009, when I used calcium with vitamin D. I had to stop the using, because I had polyuria and other symptoms. I did not yet have the diagnosis hyperparathyroidism. I got it in 2011. I have recently read that hyperparathyroidism  disturbs water conserving in the kidneys. Maybe that is why I am often dehydrated with slightly high plasma sodium. I have not received any comments about my possible dehydration from doctors. "Na+ is so little elevated" etc.

I have seen two endos, one proposes me 100 mcg vitamin D and the other 25 mcg. I don't know who is right. I have read the parathyroid.com pages. Doctors here do not take into consideration those pages. When I listen to dostors here, I am confused and don't know any longer, whether I have primary or secondary hyperoparathyroidism or any hyperparathyroidism at all (mere vitamin D deficiency).

I am now taking 50 mcg vitamin D and  waiting for elctric cardioversion. I'd like to forget the hyperparathyroidism diagnosis. I don't have kidney stones or hypercalciuria, only upepr-limit or slightly elevated ionized Ca and elevated PTH.
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