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    Old 03-13-2007, 07:06 AM   #1
    jenn3
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    parathyroid questions

    First has anyone needed parathyroid surgery with high pth level but normal calcium level??

    Also, looking for very experienced parathyroid surgeon in new york.
    thanks
    jennifer

     
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    Old 03-13-2007, 03:53 PM   #2
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    Re: parathyroid questions

    Quote:
    Originally Posted by jenn3 View Post
    First has anyone needed parathyroid surgery with high pth level but normal calcium level??

    Also, looking for very experienced parathyroid surgeon in new york.
    thanks
    jennifer
    Hi: I know how frustrating this is, but my problem is the exact opposite--elevated cal and normal pth. I don't know if you are near Columbia Univ. but they have an excellent thyroid center, that does surgery and consults. They can also give a referral, for drs, in other areas if you don't live real close by to Columbia Univ.

    Good Luck and let us know what you find out...

    Last edited by DesertBloom; 03-13-2007 at 05:37 PM.

     
    Old 03-14-2007, 08:47 AM   #3
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    Re: parathyroid questions

    thanks desertbloom

    So what tests are they doing for you with the high calcium?? This whole thing is fustruating. I also was just recently diagnosed with hypo thyroid and hashimoto's.
    Thanks for the columbia name i will definitely go onto their website. My next step is dr wants me to do 24 hour for calcium.
    if you find out what is going on with you let me know
    jennifer

     
    Old 03-14-2007, 08:14 PM   #4
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    Re: parathyroid questions

    I live in Chcago, but Im going to Tampa for my PTH surgery, just as soon as the surgeon says it's a go, which will be after last Cal test next week.

     
    Old 03-14-2007, 09:15 PM   #5
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    Re: parathyroid questions

    good luck in florida, let us know how the surgery goes.

     
    Old 03-15-2007, 07:29 PM   #6
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    Re: parathyroid questions

    Lewis 68-why go to fla. for surgery ? Is there a specialist that you are travelling there specifically for?

     
    Old 03-15-2007, 10:09 PM   #7
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    Re: parathyroid questions

    Osteo, I'm going to have surgery performed by Dr. James Norman at Tampa General. From my research he is the best at performing Minimally Invasive Radioguided Parathyroid Surgery. He performs over 30 per week, and he has done over 4000 total. You can read all about him, and even watch a live surgery being performed at [url]www.parathyroid.com[/url].

    I was a little skeptical when I first read his website. However, my mother lives near Tampa and she spoke with a few other doctors in the area. They said he is the best at performing this type of surgery, period. That, and the fact I was planning a trip to see my mother anyway, sold me.

     
    Old 03-16-2007, 09:42 PM   #8
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    Re: parathyroid questions

    Lewis-interesting regarding the Tampa dr. I will go to the dr.'s website. I hope that all goes well for you and that you have a speedy , uneventful recovery. Let us know !

     
    Old 03-18-2007, 12:02 AM   #9
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    Re: parathyroid questions

    I had high PTH (262) with only 1 high Ca reading (10.4) after that reading the Ca level were usually around 9.8. The normal Ca level held up my surgery for about 2 years. In the meantime, I developed a kidney stone with chronic urinary tract infections (this was not discovered until after my PTH surgery). I also developed SEVERE biateral thigh pain. No one connected the pain with the elevated PTH. I thought it was an old hip replacement going bad. Orthopedist thought it was a back problem. No one realized it was the parathyroid problem until I woke up from surgery and the pain was gone. How high is your PTH?

    There a several surgeons doing the minimally invasive approach - Stanford University, Mayo in Arizona (?), Norma in Florida. Norman's website is really hokey and made me think that he was a shyster but my surgeon stated that he was legit and well known.

     
    Old 03-18-2007, 10:39 AM   #10
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    Re: parathyroid questions

    PT, I got the same impression for Norman's website at first. However after seeing him perform Surgery Live on Tampa General's website made me think twice. Although hokey as his website is, there's a lot of info, more then anywhere else.

    My two doctors here still don't believe I have HPT, because my PTH is on the low end of normal (22). That's one of the reasons I don't trust them to refer me to anyone.

    I'm waiting on the results of one last CA/PTH test next week. Then the surgeon will call me to go over everything, and then I set a date. I'm probably looking at 3-4 weeks out, but I really hope it's sooner. I just want to get this over with.

     
    Old 03-18-2007, 01:22 PM   #11
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    Re: parathyroid questions

    Quote:
    Originally Posted by jenn3 View Post
    thanks desertbloom

    So what tests are they doing for you with the high calcium?? This whole thing is fustruating. I also was just recently diagnosed with hypo thyroid and hashimoto's.
    Thanks for the columbia name i will definitely go onto their website. My next step is dr wants me to do 24 hour for calcium.
    if you find out what is going on with you let me know
    jennifer
    Hi jenn3: At the moment, nothing is being done for me except to recheck my Ca level once a month or so. I was tested in the past for so many things I can't remember them all, but it's the usual ones like all the thyroid, parathyroid, sarcoidosis, chest x-ray, mamo, pap, thyroid us etc. Since my PTH and all the rest are normal, they are telling me I'm just one of those 5% that falls outside the normal range on Ca. I'm suppose to watch for symptoms of hypercalcemia, but some of those side effects are so generalized (everyone has them at some point) I'm only watching for those on the list if they were to become severe. The only Ca test that comes back abnormal is the serum ionized Ca level (5.7) and it was only discovered last March. My urinary, and total Ca is always normal. I do have a breast cyst, that could elevate Ca, but I really don't think it is malignant. I've had them in the past while on prempro, and they were all benign.

    Hope you find someone close to you that is good. I've heard a lot of good things about Columbia's thyroid center, and know they can refer you outside, if need be, so all the luck with your situation.

     
    Old 03-18-2007, 01:47 PM   #12
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    Re: parathyroid questions

    Hi Lewis: Good luck with your surgery, I hope it solves many problems, like they say!!!! Has your PTH level ever been in the normal range? I've been to that website you mentioned, and unless I'm missing something, parathyroid probs almost always show up in an elevated PTH count, is that correct? My dr feels that if your PTH is normal then something else has to be elevating or lowering calcium levels.

     
    Old 03-18-2007, 04:19 PM   #13
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    Re: parathyroid questions

    Quote:
    Originally Posted by DesertBloom View Post
    Hi Lewis: Good luck with your surgery, I hope it solves many problems, like they say!!!!
    Thanks, I'm sure it will.

    Quote:
    Has your PTH level ever been in the normal range?
    My PTH is(and always has been) in the normal range (10-65). It's just on the low side of normal (22).

    Quote:
    I've been to that website you mentioned, and unless I'm missing something, parathyroid probs almost always show up in an elevated PTH count, is that correct?
    No, that is INCORRECT! Unless your PTH level is VERY LOW(<10) or NILL(Undetectable), it means you have HPT. If something else were causing the high Calcium, like Cancer or Sarcoidosis, the PTH level would drop to nothing.

    Did you read the Diagnosis page? It explains it in full detail. Also, did you look at the Parathyroid Pictures? A lot of them had PTH levels in the normal range. Two of which have them in the 30's.

    Quote:
    My dr feels that if your PTH is normal then something else has to be elevating or lowering calcium levels.
    With all due respect to your doctor, he/she is wrong! I'm not a doctor, but I've done A LOT of research, not just on this one website. I've read a few others that say the same thing. The problem is you really have to dig to find the info. Most websites on the subject are very vague, and don't get into specifics. Even on [url]www.clevelandclinicmeded.com[/url], it states that 10% of HPT patients have Normal PTH levels.

    I understand that you trust your doctor. I trusted my family doctor until I found out that my Calcium level was elevated TWO years in a row (Dec 2005 and Dec 2006), and he didn't mention a thing. Then I go to TWO separate Endo's WITH symptoms. Both say High Calcium is the problem, but after doing every test known to man, all negetive, they're at a loss. But they still don't believe it's HPT, because my PTH level is Low Normal. Just like your doctor. I asked my Endo flat out, "Why is my CA elevated", he said, "That level could just be normal for you". BS!!! Then why do I have all these symptoms?

    Everything that happened to me (AND YOU) has been perdicted by Dr. Norman on his website. So that's where I'm putting my trust. Besides, what 's the worst can happen, I go down there, he does a Sestamibi Scan, and doesn't find a tumor? Though I'm betting he does.

    One other thing. Your Elevated Ionized Calcium level is more of an indicator of HPT then your Calcium level. Because your Cacium level can vary from day to day. Ionized Cacium stays more consistent.

    It's alot easier to do nothing without having symptoms. But knowing what I know now, even if I didn't have symptoms, I'd still be going to have surgery.

     
    Old 03-19-2007, 03:04 PM   #14
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    Re: parathyroid questions

    so far my calcium level was normal, but my pth was high. My next step the dr has me doing is 24 hour urine checking for calcium levels.
    jennifer

     
    Old 03-31-2007, 08:32 PM   #15
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    Re: parathyroid questions

    Hi, I read about dr norman and have been told I have hyperparathyroid even though my sestabi (spelling?) scan was normal My PTH is slightly elevated as is my calcium. My endo was not doing to much (I thank god she believed me though) and was just repeating blood test after blood test and wanted to put me on vit D. I went to another dr who was to say the least an IDIOT! Please let me know about your experience with Dr. Norman. I dont know if I can afford to travel to Tampa but at the point Im at I would do anything to feel "normal" again thanks

     
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