Hyperparathyroidism?

[helyanna]

Hi, my PTH is 13 (upper reference limit 7.5). My ionized Ca is slightly over the upper limit. I have hypothyroidism, for which I take Thyroid. My free T3 is near the upper limit, but I still have odd symptoms. I wonder whether I have hyperparathyroidism. How much should PTH be increased for diagnosis of hyperparathyroidism? I fear my FESS operation and other future operations because My Ca and also Na are often increased. I have many risks, eg. possibility to atrial fibrillation, infects (immune deficiency).
Regards,
helyanna

[brandycolwell]

i also am hypo, and worry that i have hpt, i would love to ask, or answer some questions. u can email me ***@**** anytime, or if you can call- its 5027442713. i have had A LOT  of symptoms that no one can figure out..also, did they check your vitamin d levels??

[helyanna]

I saw today an endo. He said that I can be hyperthyroid and the symptoms result from it. My free T3 is high normal. Because it is not over normal, I think I am not hyperthyroid.

I have had periods of muscle weakness since 2002 (even bladder weakness), but last December my neck was seriously weak I almost could not keep my head up. I also had aches in my left arm. Then, In January 2011 I had many symptoms. My upper back, shoulders and neck trembled, I had tinnitus, neuropathy-like symptoms in feet, restlessness and sometimes could not sleep, polyuria nad nocturia. I have symptoms only every now and then, at other times I feel well (due to Erfa's Thyroid medication).

What are your symptoms? Have you results of PTH or calcium?

My vitamin D level is normal.  I take oil capsules of vitamin D.

[brandycolwell]

im having my pth tested on the 25th, calcium was 13, vitamin d was 2, b12 low, folic acid low, hashimotos disease. my symptoms started all in one day with weak neck, pulling to the left, jerking to the right. tremors in my arms and legs when i lift them.

[helyanna]

How long have you had the symptoms?
During the last few days I have had tachycardia episodes and muscle cramps in legs. Today in morning I awoke having tachycardia and pain in the neck. Just now my ears are ringing.
My PTH and ionized Ca were still high on Aug 10. I wonder, whether I have hyperparathyroidism or not. D25 result was not yet ready. Next week I shall have TT on my lungs.

[medicmommy]

Your PTH and Calcium should NEVER be high (or low) at the same time. -Even if your D levels are low. I had HPT for 4 years before it was diagnosed (due to dr ineptitude!) and I finally diagnosed myself (after the 7th kidney stone in 2 yrs) and refused to leave my Dr's office until she ordered the PTH test. Puh.
I had to be put on a Beta Blocker medication (propanolol) to control my tachycardia. I had horrid headaches every day, was urinating every 30 mins, chronic heartburn, severe constipation, female hormone issues, hot flashes, muscle cramps/ twitches, and I ached everywhere. Sound familiar? The up side was, hours after the tumor was out -I was a new person...
If your vitamin D level is low, it is because it is the pre-curser to the agent that causes calcium to be absorbed. -Your levels are too high now, so if you are HPT, you body is trying its best to halt absorption in efforts to lower the levels. Unfortunately, if the malfunctioning parathyroid is excreting too much PTH, it is ripping calcium from your bone stores...Aren't I full of good news? :P ~MM

[helyanna]

Thank you for your supportive reply. It confims my own thoughts. I'd like to have the official diagnosis from doctors. Everything goes so slowly here. Doctors don't undestand what is hyperparathyroidism. Again an endo wanted to check the calcium values. He criticized the parathyroid.com pages, which I gave to him. If calcium is so slightly above the upper control value, then I cannot have symptoms of hypecalcemia. The parathyroid.com pages say that one can have symptoms even if calcium level is not very high. I have had strange symptoms for many years. They must be duo to a disease other than hypothyroidism (Thyroid medication is working welll).

My D-vitamin level has been normal. I fear that my bones are further losing calcium. I had osteopenia in 2008, but the bone calcium had since then incresed due to Ideos (it has both calcium and vitamin D). Then in 2009 I could no more use it, maybe due to too much Ca in my blood. Since then I have taken vitamin D 50-80 microg, which also has increased my bone calcium (no osteopenia). A doctor said that I don't need to take D during summer.

I fear that taking of D vitamin can cause calcification of my soft tissues, eg. heart and blood vessels. I also fear future surgical operations, shoulder joint and sinus operation. I have a lung tumour and wonder if it must be operated. After an anaesthesia I am in a poor condition for 1 to 2 days.

Yesterday I went to the hospital (lung and ENT departments) and gave a paper on my diseases and which medicines are riscable during anaesthesia and surgical operation. I have to defend myself, because doctors do not take into consideration possible other diseases.

I hope that my normal condition could be restored. Maybe I don't fill the criteria for parathyroid operation and I should still wait for many years. I'd like to have the sestamibi scan performed. It may be very expensive. At the end of August I shall travel to another town to see another endo spec. The things must not continue like this!

[medicmommy]

If you find someone to do a Sestamibi scan, make sure they have done tons of them as a poorly done one can give a false negative. Perhaps an ultrasound may work -my tumor was the size of a chicken egg and was easily found despite it's trying to tunnel under my collarbone. In the case of a parathyroid tumor, size does not matter however. Even a grape-sized one can wreak havok.
Speaking from experience, if you have a parathyroid tumor, the sooner you have it removed, the better. You body will reach a point where it can no longer compensate (keep the calcium levels near-normal in your blood) and the resulting spike can cause a stroke or heart attack. Something else you might want to investigate is pituitary-driven problems. MENS syndrome for one can effect several endocrine systems (thyroid, pancreas, parathyroid, female hormone, etc.) and can also present with tumors popping up.
If you do end up getting surgery, it is SO important to find someone who is familiar with that specialty as a bungling surgeon can cause permanent damage.

I wish you luck in your pursuit. Even where I live where specialists are near, I still had to stand my ground and be my own advocate to get diagnosed. You'll be in my thoughts and "well health" wishes. ((((HUGZ)))) ~MM

[helyanna]

I usually have pain in my neck in the morning. This day early in the morning I awoke with sweating and weak and sore neck muscles. Even the respiratory muscles were somewhat weak. Now I am sitting with a cloth wrapped around my neck. I wonder whether these are symptoms of hyperparathyroidism. On August 30 I shall see the other Endo and ask for hyperparathyroidism. My parathyroids were not seen with MRI and possibly cannot be seen with ultrasound or TT either. I think that doctors do not prescribe a technetium-sestamibi scan here if calcium levels are not very high.

Tomorrow I shall have TT scanning for my lung tumour. They give me iodid for contrast medium. Last time I felt the iodid hot in my veins. After the scan I must drink a lot of water to elimintae the contrast medium. How would possible hypercalcemia react with the iodid? A creatinine test was taken this morning. What about if excess calcium would disturb iodid elimination?

[helyanna]

Yesterday I saw and Endo doctor. He said that I don't have hyperparathyroidism but am short of vitamin D. I had dropped my vit D dose because a doctor suggested to do so for summer. My vit D level in August was 37 (reference over 40). He said that the level in blood should be 80! I am still wondering why my ionized calcium was high at the same time as PTH was high. A few days ago I began to take 50 microg vit D (the same dose as in last spring). I'll take this dose till the end of this year and then the level in my blood should be meaured. I think this will lead to the level about 60 as it was in spring. Why can I not take 75 microg dose already? The doctor said that too high doses will be dangerous.

I have not yet results from the lung TT or MRI taken for cervical vertebrae (sore and weak neck muscles).

[helyanna]

I was called by a lung specialist. He told that my lung tumour has not grown larger during the last three months. So we shall do the next TT scan after one year. The tumour cannot be specified.

I am confused due to the endocrinologist's conclusion. According to parathyroid.com pages hypercalcemia cannot be caused by low vitamin D.

[Super_sally888]

It is never normal to have high calcium (even slightly high calcium). Nor is it normal to have high PTH.  You should be getting a second opinion, and a third if necessary.

Untreated hyperparathyroid has very severe consequences.  However, it is fairly easily treated.

[helyanna]

I have been seeking clearing for this from February.  If I shall get the diagnosis of hyperparathyroidism, maybe it is not worth of an operation. It has so high criteria. I know a person, who has hyperparathyroidism and is depressed all the time, and no operation is planned. I'll see an Endo on September 12.

Just a moment ago I heard my MRI result. My cervical nerve roots are not compressed and vertebral disci are not bulged. There is slight scoliosis in my neck. Facette arthrosis was seen, but that was already seen in the Roentgen. Maybe there is nothing to clarify fully why I have pain and weakness in the neck and left arm.

[brandycolwell]

like the above person said, ca should always be in the nines. pth should never be high, if they are both high, you DO have hyperparathyroidism. FACT. see someone else.

[Super_sally888]

The only treatment for hyperparathyroid is surgery.  This is the only way to avoid the consequences of untreated hyperparpathyroid.  Severe osteoporosis and a sure result, among others.

Many patients gets snubbed off by drs who don't know.  However, this is your life and your health and please don't give up.

Please get another opinion.

[helyanna]

Is it possible to ask about hyperparathyroidism from forum doctors? How much does it cost? I think that I posted this first queastion to a doctor's forum but I have not received any answer from doctors, only got from members.

Is it possible?

[helyanna]

Now I have the diagnosis, hyperparathyroidism. I shall not get a surgery. And no sestamibi scan. I have to go to cardiologist's heart control because I had A-fibrillation last year. I ought to have UKG and holter monitoring.

[helyanna]

My heart is OK now. But my neck spine is not. I have had physiotherapy once a week, and I excercise my neck several times a day. Just now, because of neck weakness, it is difficult to sit before a computer or watch on TV.

Could extra calcium, although slight, cause my neck problem? Or is this due to possible thyroid overmedication? I wonder how my neck spine will function in future, because the physiotherapy and excercise do not seem to help.

[helyanna]

I am seeking the instructions for the forums. Could you, please, tell me who is allowed to ask on the expert forum?  Am I allowed to ask many questions in this current forum, or on different forums, or should I only continue the first discussion (max 2?)? Where can I ask about how to act on forums?

Forum instructions, where are they? The terms of use below do not give detailed instructions.

My  first question (at the top of this chain) did not apper on doctors' forum. I have asked another question on the expert forum. What is the fate of the question. Do doctors select the questions to which they answer. Costs?

[Abdrx]

Get best information from www.****.com.  A sharp RN practioner suspected me of HPT one year ago, despite her getting Ca levels of 9.5 and 9.8 (8.7-10.5), because my BP going up at visits.  I insisted it was because of "white coat", as it always went up high (145 systolic to 180).  At home I could get it lower, being calm, meditating to usually under 130/75.  I went to her, functional medicine practioner (www.
****.net), Feb 2010 for bio-identical hormones (was 58 yrs old); had osteoporosis in spine, penia in hip. She found Hashimoto's but roller coast ride to get thyroid med correct, as I had "mild" case, very sensitive to T3, finally went with Armour, 30 mg.  To bring my Vit D, 25 hydroxy level up from around 44, she put me on high dose vitamin D3 and within 6 months was 70-80; quite high.  Then symptoms really started: exteme foot/calf pain, burning in feet so much so that I couldn't put my foot on gas pedal (drive long distance to/from work), extreme fatigue so that I couldn't recover on my days off; no desire for anything in life any more though I am quite spiritual and kept me from depression.  BP going up even at home, restless sleeping, had to stop walking, couldn't even ride my Schwinn AirDyne without causing foot aches, felt neuroma developing, too tired to socialize any more, noticed upon massages I got that I couldn't wait to have my hands and feet deeply worked,as they were achy deep inside.  Then had first intact PTH level (9 months after first visit with RN) at 73, high being 65.  I am medical technologist who works in the lab, so wanted repeat of it, as I'd not been fasting and saw that was suggested despite our receiving PTH tests all day long.  Then was 130's!  Then looked at Dr. Norman's web site above, so many symptoms fit me, but I still thought symptoms also of hypothyroid, my 130 mile daily commute, my overwhelming workload. Followed up with PCP and Endo per RN.  They ordered sestamibi (saw too late Dr. Norman says do not get, so often negative) and it was negative. Then Endo pulled up my calcium lab history from 2007 till Jan 2011 (10.2, 10.1, 9.6, 10.6, 9.6, 9.5, 10.0, 9.8).  The one abnormal at 10.6 made me go back to Dr. Norman's web site.  With neg. sestamibi and only 1 abnormal Ca, despite several PTH's in 130 range, they called it hyperplasia, and wanted to treat me for bone loss (despite, amazingly, on the bio-identical hormones two years, my osteoporosis in spine went to penia and the penia in hip increased in bone mass in Jan 2011).  I learned from Dr. Norman: over age 45, one shouldn't have consistent Ca in the 10's, should actually stay pretty stable within a couple of tenths of one's particular value, bone building drugs don't help bone loss due to HPT.  By about March 2011 my muscle/bone pain at it's worst, fatigue so extreme I thought I'd have to retire so began spending nights adjacent to my work place.  I felt strongly I had HPT, despite my doctors' diagnosis.  Started sending my labs and narrative to Dr. Norman even though I knew I'd fall in their "gray zone".  Then I noticed three days after being at work that the leg/foot pain was ever so slightly less (I am a health nut, eat clean diet, and am quite aware of bodily changes) and asked why, what made this difference?  Realized I'd forgotten my Vit D3 aso went to Dr. Norman's web site on that topic: Vitamin D exacerbates HPT! Stopped it and felt well enough in 4 days to go to family party, stood almost the entire time.  So perused the site for effects of calcium.  Found that calcium, multi-vitamins, D3, and high calcium foods exacerbate the symptoms.  I fixed a high calcium healthy breakfast shake every morning!  I stopped all plus strontium and MK2 for bone health.  I got better, still fatigued, spent nights near work but could manage.  Norman center called to say they weren't ready to put me on an operating table just yet.  But I told them about my reaction to getting off all supplements and that I was able to tolerate the discomfort but felt strongly that I had this.  So they said no one had ordered all the tests (serum calcium, ionized calcium, and intact PTH) to be drawn on the same day.  

[Abdrx]

This is rest of my post:
They sent me forms that I have the draw one day and then must go back 3-4 days later for same draw of tests.  Two weeks later they called to say all tests were abnormal and I was going to have surgery!  I had successful surgery Sept 2011 and am 6 weeks post op with normal levels for all tests.  They removed an almond size benign tumor, probably there 5-6 years.  I feel better than I have in 6 years since we lost our home in Hurricane Katrina (my feelings are that the stress and less than desirable diet I began contributed to my tumor developing but that's just my opinion).  No more leg/foot pain, BP normalizing.  And, for those of you wondering,  now in hindsight let me mention these symptoms which I wondered if they had anything to do with HPT.  They seemed to be related. I'd had heart palpitations and a most strange sensation of "fluttering" in my chest/gut/head. It was as if my "nervous system" was constantly on.  That is gone now.  My RN had an EEG and EKG performed and it was okay. Also checked my kidneys with an ultrasound; okay.  Though not diagnosed with Acid Reflux, I'd noticed in the last year, some stomach upset upon drinking my single morning cup of coffee (that gone now).  Though not constipated, my BM's had slowed down (I normally had 2-3/day), were more difficult and I sometimes skipped a day; back to normal.  I sleep better, have much energy again, the ache deep in my hands is gone and the severe foot/calf pain gone.  I'd noticed sensitivity to light and noise in the last year or two and questioned it; that's gone now.  I also think my vision has improved and was leary of spending money on new lenses so waited.  Will have to see on that. This is difficult to put into words but I'd lost all of my normal desire to travel, read, see the world, as I'm a curious person and love learning; that went out the door.  It's back with a vengeance. I had lots of anxiety and some panic attacks over the last few years: I kept attributing that to Katrina's effects. No more! I never realized how much while in it, but did question my brain fog: I was extremely organized at work and my workplace was getting messier and messier.  I was also much slower accomplishing my tasks.  I had trouble making decisions in the last 3-4 years and now can throw out a decision much more quickly, my work environment much improved and my productivity increased. I hope this helps many of you seeking a black or white answer to what I believe is much more common than previously thought and mis-diagnosed.  I just saw my endo yesterday and he agreed to that statement, having used my case recently with a group of endo's. Even my doctor at Norman Parathyroid Center who performed my surgery asked just why and who had suspected this.  When I told him because of my BP, he said if I ended up with a tumor, she was one sharp healthcare provider and she WAS!  Dr. Politz and Dr. Lopez did my surgery; they were wonderful.  The entire staff at Norman Parathyoid Center was wonderful, from Jodie who starts the process to the billing, insurance departments to RN Kelly who answers your concerns.  Working in a hospital myself, I know what smooth is and what it isn't and this is a smoothly run facility, that makes a most difficult diagnosis and surgery most wonderful.  Even with a few problems post op of low calcium for me, Kelly replied immediately and gave me the advise I needed.  I have a wonderful life back and can't wait to live out the rest of it.  I wish you all encouragement but you must persist if you think you have this. It is difficult to diagnose; just look at my own numbers.  Key for me was the high PTH values but even then, not having but one out of range calcium, wasn't enough to confirm the diagnosis.  And now I'm hyperthyroid so must see my RN practioner in next few weeks to see if I have a thyroid problem at all anymore; they did see and remove a nodule on my thyroid while in surgery.

[helyanna]

Dear Abdrx, thank you, I was moved to read your story. And I appreciate your making to words what you have gone through.

I do have primary hyperparathyroidism. But I am circling about at Doctors' telling my symptoms and seeking for help. I have many diseases, it is enogh to me. Doctors do not know, what is wrong with me. "Hyperparathryoidism does not cause my symptoms", they say. I have neurological symptoms, infections, some immune deficiency. I  was diagnosed with CFS/ME in 2007. It has been since the eighties, but now I am not fatiqued possibly due to thyroid medication. As early as during the eighties I had some neurological symptoms. Nobody knows if I have had hypothyroidism since then. I don't know why I am still having symptoms after correcting my hypothyroidism. My symptoms are weird and occurring as episodes or periods and changing site. The neck symptoms are now getting milder - but symptoms began in my legs. The regulation of blood circulation is disturbed in my feet. Also I have blood pressure disturbances. When thinking of possible causes of my symptoms, I have begun to suspect even borreliosis.

Dr. Lupo kindly answered my question. He said that the symptoms usually occur in relation to the blood calcium level, but hyperparathyroidism cannot be excluded from possible causes of my neck symptoms.

A sestamibi scan is impossible here, because no parathyroidectomy will be made. I have a lump below my jaw (been there at least for one year), but they say that it is a lymph node. I have slight lymphocytosis (even in last year). I have also a tumor in my lung. It cannot really be a parathyroid. Next TT scan of my lungs will be in August 2012.

I have to forget my hyperparathyroidism, because, according to doctors here, it cannot cause my symptoms. I am continuing my tour from doctors to doctors. The next is a cardiologist for my heart symptoms, then an ENT Doctor, and after that a specialist of rheumatoid diseases.

ANCA antibodies were negative. This result may exclude vasculitis or polymyalgia. But not all people suffering from these diseases have these antibodies. Myasthenia gravis is still waiting for verification. Sarcoidosis is also under studying (ACE previously at the upper limit).

Do you think that I should stop taking vitamin D? I'd like to prevent loss of calcium from my bones. I am taking it 25 mcg per day (last winter used it 50-80 mcg). I stopped taking calcium pills in 2009, because I could not tolerate it (had osteopenia in 2008).

[Abdrx]

I am sorry you have so many things going on but if you have hyperparathyroidism, surgery is the answer to that.  If you do have it, you should not be taking those vitamins Dr. Norman mentions on his web site: D, calcium, multi, etc until the tumor is removed.  It is amazing how many different organ systems can be affected by HPT; this I've learned from reading threads on the subject and from medical web sites. As far as the HPT, I've spoken with one of two siblings who both had HPT, different symptoms, not the familial type.  These are the doctors they were extremely happy with about diagnosing and/or sugically removing their tumors: endocrinologist Dr. Chip Reed in Atlanta, surgeons Dr. John Kennedy, expert in MIRP, at Dekalb Surgical Center in Atlanta, Dr. Udelsman at Yale in New Haven, CT.  And then there was Dr. Politz at Norman Parathyroid Center.  I called Dr. Reed's office and he is booked way out but there are two other MD's at his office.  The following is my opinion only and comes from my own experiences from having done so.  I would see an anti-aging, regenerative,  and functional medicine practioner (can be found for your area by going to www.worldhealth.net).  They look at the illnesses, lab results, etc in an entirely different way from those those in internal medicine, specialties, etc.  Instead of "zeroing" in on their own specialty, they look at the body as a whole.  I think they are of much need in medicine.  My own practioner, a RN practioner (who completed the fellowship), has gotten my entire families' health back in order; however, she has always said she is not there to replace my PCP or a specialist if needed.  There are MD's who complete a fellowship in this field of medicine; however, they are not all created equally, from our own experiences (though I didn't know it at the time, an endo I had my daughter see, that I've only recently come to find out, did complete this fellowship, was a huge disappointment to us).  Look for one with some years of practice, and ask questions of their office.  Once in worldhealth, choose "anti-aging directories", then "physicians and practioner directory", then under Basic Search, select Anti-aging health professionals, select US, fill in your state, city, distance you're willing to go, and your zip.  If you live in the MA area, there is Dr. Mark Hyman (his web site excellent).  What state do you live in?

[helyanna]

I am allowed to take 25 mcg vitamin D daily. I do not take any calcium pills but I am taking pruducts made of milk.

I should read from Dr. Norman. I am from Finland and cannot use foreign facilities.

[Abdrx]

Please read his web site at www.****.com   After stopping all of supplements Dr. Norman mentions, my symptoms improved greatly enough that I could work, as I was contemplating retiring.  Even the smallest amount of high calcium foods (he says to refrain from all that as, especially if one has high calcium levels, it can cause your calcium to spike, and in worse cases cause a stroke; my calcium levels were all in the 10's but only one abnormal at 10.6), like cottage cheese for a snack with fruit and some slices of cheese in the afternoon caused my legs to ache more!  People do go to them from all over the world.  I found their entire office wonderful to work with...my experience. Even contact them as to whether there is someone they know in your area to do the surgery.  They are quite helpful