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

[helyanna]

I citated these from somewhere:

Indications for Surgical Treatment of Primary Hyperparathyroidism

Symptomatic primary hyperparathyroidism (nephrolithiasis, nephrocalcinosis, osteitis fibrosa cystica)
Asymptomatic primary hyperparathyroidism
Serum calcium level > 1.0 mg per dL (0.25 mmol per L) above the upper limits of normal
Urinary calcium excretion > 400 mg per 24 hours (10 mmol per day)
Creatinine clearance reduced by more than 30 percent compared with age-matched persons
Bone density (lumbar spine, hip, or forearm) that is > 2.5 standard deviations below peak bone mass (T score -2.5)
Patient age < 50 years, with asymptomatic primary hyperparathyroidism
Medical surveillance not desirable or possible
Surgery requested by patient

I don't fullfill those criteria. Leilajax, I remember you from your own question (in some else forum?). Maybe I have not vasculitis, borreliosis or sarcoidosis. My lung nodule has not grown during the two latest years (it will not be followed longer). I have a large lymph node in my neck, it seemed normal in ultrasound. Maybe my chronic sinusitis has enlargened it. We have no good Lyme testing here. I think that I got AF due to increasing vitamin D intake to 100 micrograms. I am interested to hearing how your things will be...

[leilajax]

I can't understand why they don't want your parathyroid out.  If your levels are consistently high and you are symptomatic then it doesn't make sense to me, but obviously, I'm no doctor.  Isn't the sestamibi scan supposed to be a guide for the surgeon, not as a diagnostic tool?  I am currently going through the same process/symptoms, but my calcium is only just slightly above yours and my PTH isn't nearly as high as yours.  I also thought it was interesting that you mention vasculitis, borreliosis and sarcoidosis.  I just had a lymph node removed for biopsy (sarcoidosis is a suspect).  Extensive Lyme and coinfection testing is underway as well.  I also am seeing a cardiologist tomorrow regarding vasculitis.  Sestamibi scan was done a month ago, but they also need to do an RAIu scan in a few weeks as a comparison map, or something.  There is something to this chronic infection lymph thing though that we have in common.  I can't imagine how frustrated you are with your PTH so elevated and still no efforts made by docs.  Maybe I missed something.  The brain doesn't retain info like it used to;). Keep in touch!  Wish I had answers for you regarding the vit d.  I was told to take at least 2000 iu D3 a day, but with high calcium, like you, I'm skeptical.

[loony56]

Please go to the web sight DR KALSA SORAM He is awesome when it comes to Vitamin D. He is the Guru in that department. He had Vitamin D at his store which is pure. I learned dairy was a huge culprit why everyone is sick! Most of this world is Vitamin D deficient. Go to Michael Greger MD and watch his 2 minute videos 5 days a week. Chemicals, food, vitamins are not what manufactures say. Trust me I have done my homework! I have to. I even make all my own cleaning supplies! Hope you get to feeling better! Loony56

[helyanna]

My latest test results:
Ionized calcium 1.37 (ref. 1.16-1.30)
PTH 64 (15-65)
D-25 71 (>40)
morning U-Osmol (1h) 387 (600-1200)
S-Osmol 292 (280-300)
P-Na 142 (137-144)
Free T3 6.7 (3.1-6.8)

Now my S-Na was not high, as it often is. I am using 50 micrograms Vitamin D/day. My ionized Ca is the highest I ever have had.

On 6 Jan, after raising vit. D to 100 micrograms and dropping it to 75 for one day, I got atrial fibrillation, and I had electric cardioversion at the end of February. Immediately on Jan 6 I dropped vitamin D to 25 micrograms but continued with 50 micrograms.

Since then I have got easily tiered. I have episodes of weakness and tachycardia. I may even have coronary artery disease. A new symptom is sometimes dizzyness. Tinnitus has returned. Sometimes my face is red with burning sensation, and after that I sometimes feel cold. I may have both primary hyperparathyroidism and diabetes insipidus. Doctors do not believe. Some of them say that don't drink so much water. I am afraid of possible kidney disease. My kidneys cannot concentrate urine. But I have not had symptoms of kidney stones. I may become dehydrated before I feel thirsty. Doctors do not concern about parathyroid.com.

Should I stop taking vitamin D? I don't take any calcium pills.

[helyanna]

My endo thinks that I may have secondary hyperparathyroidism and I should take 100 microgrmas of vitamin D. My ionized Ca is at the upper reference limit or above and PTH at most times above the ref. range. He said that the set-point of Ca sensing receptors in my parathyroid cells may be wrong and, therefore, my ionized Ca is so high at the same time as PTH is high. Did I understand it correctly? Is high normal or over normal calcium merely characteristic of me? I have read somewhere that a wrong set-point may cause parathyroid hyperplasia (as I probably have).

Could this condition be corrected by high doses of vitamin D? What is low level of vitamin D25 in serum?

In January 2012 My SD25 was 60 nmol/l, when PTH was 92 pmol/l and ionized Ca 1.35mmol/l,
in August SD25 was 55 and November 69.

Are these vitamin D levels too low and that's why I should take 100 microg. vitamin D?

Some people say that hyperparathyroidism has nothing to do with vitamin D levels? I am confused.

[helyanna]

I have got new labs from December 11:

Ionized Ca 1.26 (1.29 on November 15), (reference 1.16-1.3)
PTH 70 (64 Nov.) (reference 15-65)
vit. D-25 39 (69 Nov.) (ref. over 40)
sodium 144 (ref. 137-144)
potassium 3.5 (ref. 3.3-4.8)
My vitamin D25 has dropped drastically. Is this for safe of my kidneys?
The daily intake of vitamin D was the same at both times, 50 micrograms.
PTH has begun to rise again but ionized Ca seems to be decreasing (if the dropping is significant at all). PTH was max. >90 in early 2011.

Is my normal Ca near the upper limit of reference? My Endo said something like that.

I don't understand my varying values of PTH and vit.D 25. Vit D25 is not synchronous with its daily intake.

My blood pH has dropped a little but is still within the reference range.

I think that I am a test animal of the Doctor.

[helyanna]

In autumn 2012 my Endo said that I may have secondary and not primary hyperparathyroidism. My vityamin D  daily intake was doubled (to 50 micrograms). After two and a half months my inonized Ca and PTH were at the upper limit of normal. Previously in this year my ioniozed Ca was the same, but PTH over the upper limit, thus PTH has decreased a little..

My vitamin D has previously been about 50 to 60 nmol/l. Now it is 69 nmol/l. I think that I don't have shortage of vit D.

In summer 2012 I had a Sestamibi technetium scan on my parathyroids. The private doctor said that I may have hyperplasia in my parathyroids and not an adenoma. The result was only weakly positive in the right lower parathyroid.

I think that I am suffering from a reactive arthritis. I am HLA-B27 positive. My joints or ligaments began to ache in last July. Every now and then my sinusistis becomes active. No FESS operation will be made. Sometimes I also have infections of oral mucous membranes and eye conjunctivitis.

[helyanna]

Thank you for your information.

[Abdrx]

parathyroid.com

[helyanna]

Those pages which you referred cannot be seen here?

My labs suggest sarcoidosis now. Maybe not.

[Abdrx]

To become a patient of Dr. Norman's Center, one does almost everything online.  You must fill out one or two forms online, submit your lab results, any doctor notes you have, and write your own narrative.  The cost of that is around $1650.  You can "self refer" yourself if you do not have a physician's support.  But if you have elevated serum calcium, elevated PTH, and elevated ionized calcium, you're on your way to having them confirm your HPT and do surgery.  If they do confirm it, and you self pay (meaning insurance doesn't pay for you), they deduct that "consultation fee of $1650" from the final fee. I had tachycardia also.  Believe me, the surgery is worth every penny! I have my life back and no one believed me!  Even Dr. Politz was not certain and ordered the redraw of those 3 lab tests, ALL on the same day, twice to be done 3-4 days apart.  

[Abdrx]

From ****.net, there are 3 MD's listed in Finland.  check it out

[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

[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]

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]

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]

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.

[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.  

[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?

[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]

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]

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?

[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.

[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.