Hyperparathyroid

[Fay53]

Hi,
I had one parathryroid gland removed 3/2009 due to an initial  PTH level of 68 and calcium of 10.2.  By the time I had the surgery, they thought they had found a small adenoma by scan; after V D supplements, my levels were 62 and 9.6 and they did a minimally invasive surgery.
After 1 1/2 years, my levels have come back at 9.9 and 84 with subsequent calcium levels fluctuating between 9.4 and 9.9 over 4 weeks time.
My pathology report after surgery said: 'enlarged hypercellular parathyroid gland consistent with parathyroid hyperplasia.'
It seems as if my symptoms are back and my latest bone scan is a tad bit worse than previous, with a spine T score of 2.4 (borderline osteoporosis on total).
I've been told to simply check levels again in a year.  I don't understand the criteria being used here to determine when to treat and when not to.
Also, couldn't my calcium fluctuate quite a bit, explaining the symptoms I seem to have?

Thanks

[Bama_Lori]

Dear Fay,

Fellow sufferer here of HPTH, hypercalciemia, and osteopenia. I was misdiagnosed for 12 years with every syndrome and mental disorder you can name off....the drugs for the symptoms nearly killed me several times, until I figured out my own diagnosis and demanded testing...and boom there it IS.  I have lost everything doing what my docs over the years have told me...I don't trust a one of them any more.

I have studied my condition in great length for months....ok..here is what you need to know.

1.  The vitamin D supplements and or water pills (lasix) will mask the true reading of your calcium level. (which will fluctuate greatly, daily and even hourly, just like an insulin reading) ..making it seem lower, when actually it is causing the body to absorb more calcium causing more symptoms...only thing this does is to prevent red flags going off when your blood is checked.  You want a true reading stop taking those two before your next test.  D causes you to absorb more calcium....I would stay away from that.  Read about it, could cause stroke or heart attack.

2.  Since you still have HPTH, your surgeon did not find the adenoma that is causing the HPTH, if he did, your levels would be normal...not both high...the ONLY thing that makes PTH and CA high at the SAME time is a TUMOR on the parathyroid gland, you have four, they could be located even under the chest bones, and cutting into your neck, they will never find it.

3.  IT will NEVER get better, only worse, and you best do something quick before you start breaking bones.  

4.  Go to www.parathyroid.com, read about the M I R P...minimally invasive radio-guided procedure, this is the ONLY way they can find the bad gland or glands properly...this procedure has a 99.4 percent CURE rate, yes, I said CURE.  They inject you with radio iodine, and only the bad glands uptake the tracer...then an ultrasound like machine guides the surgeon to the tumors and only the tumors are removed, leaving any good glands in tact....

5. you do NOT want all the parathyroids removed if you can help it...that will make you HYPOcalciemic and your symptoms will be just as bad as HYPER for the rest of your life with no fix for that.  taking out all four and Putting one in the arm...dont go there either, unless you have 4 gland hyperplasia, and this is EXTREMELY rare.

5. Watch videos on you tube put out by parathyroid.tv  by Dr. Norman to find out exactly why your surgeon did not fix it the first time.  If you have the means to travel to Tampa, then I would do it....other docs may mean well and just not be experts on the parathyroid, or they may just need a paycheck and the more you come back with symptoms and the more meds they can push on you for your symptoms, while they keep you sick with HPTH, the more money they make...its a dam shame.

Watchful waiting should never be done...it only gets worse.  Words like borderline, and mild have no place for this disease...IT IS A TUMOR...how do you have a MILD OR BORDERLINE TUMOR I ASK?  Im calling BS on those terms.  

Go look at the parathyroid.com site, read about MIRP, vit D, and look at all the pictures of the negative scans and "borderline" size of the tumor pictures on that site.

Hope this helps,
Lori

[Bama_Lori]

Dear Dr. Lupo,

I have HPTH, sestamibi negative, PTH 98, Ca 10.8 Vitamin D 11.  EGFR...really high. Osteopenia.  I have two bilateral thyroid nodules, one cystic, and one solid, irregular borders, that is hypeochoic, just under a cm, with a 1.25 cm left jugular chain lymph nodes.  These are both located in the upper poles, left and right.

They said the Spectra CT nuclear scan showed no parathyroids on the report...but I now have copy of the disc...and I can see them, as well as the nodules, and I am NOT a radiologist, and I know what it is...why would they not say it on the report..all it says is NO parathyroids seen.  

The nodules are clear on the nuclear CT scan in my opinion, they look like moon rocks in gland, exactly as the ultrasound report described them, in size and shape.   then there are nearby four bright glands that look like a bean sprout...glowing brightly at the head, some larger than the others...I feel they are not being honest with me., or the order was to just look for parathyroids and they just didn't note the thyroid nodules and lymph nodes..?

I am confused and don't know what to do....but I want these things out of my neck with minimal risk of complication.

I have suffered greatly for 12 years and finally got a diagnosis three months ago of HPTH, and by Dec. 1, they found the thyroid nodules on ultrasound...Dec 15 they did sestimibi and spect Ct scans that showed nothing.

I am a USN veteran....I do not have other insurance so I am stuck with doing what the government wants for me.   They are suggesting four gland hyperplasia due to negative scans....I am not on board with this, as the odds of 4 gland hyperplasia are miniscule vs. the odds of a bad scan;  

I feel that exploratory surgery is far too risky and want the M I R P.  I am due to see yet another specialist at the VA that also works at UAB, a Dr. Peters.  He is an OTO guy...why they are not sending me to an ENDO surgeon?  

This has me perplexed.  If you drive a Volvo, you would not go to a Honda specialist for maintenance,, even though they are the same class of automobile....why should body parts be any different?

My question is this:  Can I have the M I R P to take care of the parathyroid and thyroid nodules at the same time without having my thyroid and parathyoids removed completely, as these patients I read every day suffer greatly from being hacked up unnecessarily every day, and lose their voice, suffer shoulder, neck and face nerve issues as well as even worse suffer the rest of their lives with calcium and TSH imbalance that keeps them sick and no choice but to gulp down pills every few hours to live forever, and NEVER achieving homeostasis again, because the parathyroids were inadvertently damaged or removed during the thyroidectomy.!

I want to be CURED, and not to have a new set of symptoms.  I have been so sick I have lost everything, my home, my job, my credit, and had to file bankruptcy last year...and now no longer have my good health insurance either.  I am on food stamps even..

I was very successful earning more than 60k a year (IN Alabama, that's a lot), prior to getting so sick...now I cant even pay attention.  I only have a good twenty years left to regain my losses prior to retirement.  Will you please help me figure this out?  I have been unable to work for the last seven years.

Is there a blood test for MEN syndrome and are the ovaries affected with MEN...mine were taken out ten years ago due to cysts, tonsils taken out at age 12 due to constant infection.   The milk my family bought when I was young (1965-1975) came from a plant very near a nuclear test site in Mississippi...could this have caused all my troubles?  The plant was later shut down due to radioactivity.

Thank you for your time,

Lori Muir

[Fay53]

Dr. Lupo,
Thank you for your response.  It seems I fall into a difficult area regarding diagnosis and treatment of hyperparathyroid.
I didn't post correctly, my bone scan was -2.4.  My density worsened slightly in one hip since my surgery a year and a half ago.  I was under the impression that I might actually see some return of bone health, so this is a concern.  Apparently my PTH never returned to normal after surgery.  (I recently got copies of results.)
Of greater concern, compared to my 2006 bone scan, the radiologist stated that I have lost 6% of bone density in my spine, in 4 years.
It seems then, to wait 'until it gets worse' means to wait until I get to -2.5 or osteoporosis.

Since it says hyperplasia, I assume there isn't any reason to think it will get better.
Just as an aside, I have come to believe that researchers/Doctors will discover a great deal more about the mechanisms and effects of this imbalance.  I have always been an optimistic, active and somewhat stoic personality.  I went through menopause early, several years ago, so the symptoms I have experienced, even with 'high' normal calcium, have been quite noticeable to myself and my family, especially fatigue.

It would be interesting to pursue the study of this more; I suspect that a 'normal' calcium level may simply be the result of having 'robbed' the bones to the point that not much calcium is available.
I also believe that on the days that it would seem I have a urinary tract infection because of the symptoms (but don't) that the kidneys are trying to deal with a spike in calcium.
There are also probably effects of high PTH levels, unrelated to elevated calcium symptoms, that we don't know about yet, but that people who deal with it, feel.

Again, thanks for your answer.  I don't relish the idea of surgery and am more than willing to avoid that, as long as I can avoid more serious bone disease and poor quality of life.
If the posting mistake I made concerning my bone density score (-2.4) changes your thoughts on this, I'd appreciate knowing.

[Mark Lupo, M.D.]

You have borderline PTH and Ca levels, concerning for mild persistent primary hyperparathyroidism which may be contributing to bone worsening.  These levels are hard to definitively link to other symptoms.  If you have surgery again, would see an expert parathyroid surgeon who can treat the hyperplasia (removal of almost all the glands) if that is the case.  However current Ca levels in th 9.4-9.9 range are normal and most of the time we would monitor this unless there are active kidney stones or definite worsening bone.  Keep vitamin D normal as the elevation in PTH in this case may also be due to low levels of vitamin D, however if this is the only cause, the Ca levels are usually a bit lower.