Low D, and Primary Hyperparathyroidism Vs Seconday HPTH

[Bama_Lori]

Question:

For the last six months I have been diagnosed with primary HPTH due to high calcium (10.4 - 10.8) and PTH 88-110, vitamin D 10-11;  

Finally I was sent to a surgeon for removal of the parathyroid adenoma (s), the Sestamibi did not show adenoma...scan done at the Veterans Hospital ....and was poor.  Thyroid still lit up on second set of film so no adenomas could be seen, so then they said, well you have four gland hyperplasia...and we need to do exploratory surgery, take all parathyroids out and put one in your arm!  I said NO...I dont want to become hypocalcimic!!  I want the mini procedure!

I do not want exploratory surgery, I want the mini safe procedure the MIRP, and cannot find a doctor that will do it without making me pay an additonal 2000 up front over and above insurance payments as an intial "consultation fee" because I do not live in Florida, yes I am talking about the world renowned expert Dr. Norman.

I refuse to let them do the FNA on my thyroid nodules as I have read, this will cause scar tissue and will look just like cancer cells upon biopsy of the lobectomy of the thyroid after it is removed, then I will be treated for cancer, lose the entire thyroid after the first surgery next...and all when I dont have cancer possibly.  My feeling is they can do a frozen section of the nodule during the parathyroid surgery, so why do the FNA and risk it?  This will not change the treatment...surgical removal is all they can do plus radiation..

Now, because I will not let them "EXPLORE" and diagnose me with CANCER Due to FNA scarring...they have changed my diagnosis to secondary HPTH and are making me suffer in continued pain and distress of high CA and PTH with low D.  Gee thanks for all the good advice Dr. Norman, now they are all pissed at me because I told them what you told me to say!  You need to add a section of what to do when this scenario happens...like a list of Docs that will do MIRP without money up front....we are sickies remember?

My 24 hour CA UR tests have been 199, then last week it was 220, I added my own D through fortified foods and sunshine, and I feel like complete doggie do....all symptoms worse even though my Ca was only 9.4.  My kidneys are functioning fine, and all other urine calcium levels were in normal ranges.  My Calcitonin test was normal at less than two, so no MEN or medullary cancer.

Now, one other note....twice my Ca has tested in the 9's...9.6 then 9.4.  Both of those tests were LATE in the afternoon like 4 pm.  I have read that PTH peaks at 3 am.  All my Ca tests taken in the morning were 10.1- 10.8, with corresponding PTH of 88-97, with 55 being high normal.  Last Ca and PTH was 9.4 Ca and PTH 110 with 90 being high normal at UAB.

My TSH levels have been 2.3 and 2.5...now this last test, when the Ca was "normal"...my TSH was less than ONE.. That seems odd to me, can anyone enlighten me on this?

Two thyroid nodules, bi-lateral, both upper poles, right cystic, and the left is solid, irregular borders, hypeochoic, oblong shaped, longer than wider...at nearly a Cm by half cm. with a 1.25cm left jugular lymph chain showing.  I feel as my airway is obstucted on the left side of my throat....throat hole seems smaller....cokes choke me...bubbles get stuck often, its like the airway shuts down and spasms.

The surgeon now says I have Secondary HPTH due to low Vitamin D and is sending me back to the ENDO for D therapy....I  WILL NOT DO IT...  everything I have read tells me that D responds to calcium, not the other way around and furthermore....D deficiency is NOT listed as a cause of Secondary HPTH...only kidney failure or MEN...so NOW what do I do...???

Getting the run around, been sick for ten years, finally have correct diagnosis of primary HPTH...now I STILL CANT GET HELP and I  DONT HAVE TWO GRAND TO GO TO TAMPA.

IS Doctor NORMAN the ONLY surgeon on the PLANET that will do M I R P and gets the fact that Sestamibis are crap for the most part and  Low Vitamin D NEVER causes HPTH with OSTEOPENIA DIAGNOSIS?

What they are doing to me now should be criminal.  

I live in Birmingham Alabama...please help!!  I am getting the run around because I have taken charge of my own destiny and refuse to stay in the sick system and continue feeding it!....I want the CURE...not more tests and mediactions that WILL NOT HELP ME.

That is how I feel anyway, that I am being punished for asking for the correct safe surgery...and I will not comply with needless dangerous tests or prescriptions any longer.  I used to be a Florida resident, when stationed there for three years while serving in the USN, but that doesn't seem to matter to Dr. Normans office....pay up or shudd-up is what I get, hell they wont even return my emails begging for help.

It seems with the 99 percent cure rate of Dr. Norman, he could afford to take that one percent chance on curing me so that I may be able to work again and re pay him, but no, he wants his money up front....again, I am very sick and barely able to keep my groceries stocked after the utilities are paid, lost my credit last year due to bankruptcy and foreclosure...I am so screwed.  But I DO HAVE EXCELLENT BLUE CROSS BLUE SHIELD NOW and no longer have to fight the VA on this issue!

Is there a surgeon out there for me willing to take my insurance money to CURE ME, instead of MILKing my insurance by keeping me in distress...surely to God there is!

Please help...I am at my wits end here.

Sincerely,
Lori

[Bama_Lori]

Good News---kind of.

Dr. Normans office has now agreed to set me up on a payment plan for the 1600 consult fee since I have insurance and they don't have to wonder if the Veterans Admin will re pay them for the procedure.

Apparently the government has bad credit from previous patients.

I am very fortunate to have my Blue cross again and not have to rely solely on the VA to treat me, there was no option there, only exploratory, with a general surgeon.  What a shame the way we treat our veterans.  

They would pay for the big nasty surgery that takes 4-8 hours, three days in the hospital, under anesthesia, with a 15 percent chance of major life long complications but not pay for a much safer procedure, with only .5% risk for an outpatient 20 minute operation.  Talk about a $400 hammer!  Waste and abuse is rampant, and everyone makes out except the veteran.

The extra payments will be so difficult for me, plus the trip in itself, but hey...one thing the Navy taught me still rings true...." Re-work costs three times as much as doing right the first time"  So...I will suck it up and do it right!  

Wish me luck, and I will keep you posted.  I hope my 1991 Honda Accord will last me another year or two!!

Thanks,
Lori

[medicmommy]

Yes, he is in Seattle, WA. You might try contacting the hospital to inquire about 'medically necessary transportation". Every now and then medical insurance will pick up part of the tab for transportation and lodging for out-of-area specialized surgical patients. Virginia Mason takes care of patients from all over the world. They have limited lodging for short-term out-of-area patients and even have places for support relatives to stay. It's a pretty amazing place. I can certainly understand your fear of getting something mucked up for the rest of your life. Good luck on your quest! ~MM

[Bama_Lori]

Well I have always wanted to see Washington state...that's where he is right?

About the most I could afford to do is drive out there, and with these gas prices, even that may not be within my means right now, then there is lodging, I guess I could pack my tent...its that dismal money wise....any suggestions?  

There is a Dr. Titus in Atlanta that does the thyroid and parathyroid endoscopic surgery trans axillary (thru the armpit)  This is pretty new and I don't know the effectiveness vs MIRP, but it seems safer than exploratory to me, and seems like the risk of damage to healthy parathyroids can be avoided unlike exploratory.

At this point I am being forced to PUNT in the fourth quarter dammit....!

Here is a video link on the endoscopic technique...looks impressive.
http://www.youtube.com/user/BamaLori?feature=mhum

Anyone had this surgery for HPTH or Thyroid...please chime in!

Dr, Peters at UAB said this will cause me more adhesions than exploratory?  Not so sure this is correct information, my biggest concern is becoming hypocalcimic post exploratory due to damage of healthy glands....happens all too often...more than is reported I fear from reading all the posters in here suffering with it post TT.

Thanks for reading me!

Lori

[medicmommy]

Hi Lady.
That ***** so bad...I can offer you my surgeon from Seattle at Virginia Mason Hospital. He is fantastic and will be happy to take your insurance (I have the same). His name is Dr. John Ryan. He is chief of thoracic medicine and is also a professor at the University of Washington Hospital. I was able to just have the mini surgery, but he did say that, if he found something different after he went in, that it could have turned into the full procedure.  Here's his site. E-mail me if this doesn't get through...Even if you can't use him, I'll bet he knows someone who can. -He's one of the best in the nation. ~MM
https://www.virginiamason.org/body.cfm?id=1175&action=detail&ref=439