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    Old 02-11-2007, 08:32 PM   #1
    Lewis68
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    Hyperparathyroidism

    Hello to all pHPT's,

    I may have this and was wondering what other people's symptoms are besides the common ones.

    My Calcium is 11.4, and I'm waiting on my PTH level to confirm it.

    My main symptoms are:
    Dizzy/lightheaded - I was Dx with BPPV
    Brain fog - Though it may be the dizziness
    Weight loss (muscle weakness) - 30lbs in a year. 10lbs in last 2 month
    Heart palps - Had stress echo and was ok
    Fatigue
    Minor aches and pains, but no bone problems, that I know of.

    My main concern is the weight loss, because I don't see it as a common symptom. Does/did anybody else have weight loss?

    Thanks.

     
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    Old 02-20-2007, 06:26 PM   #2
    Porkyy
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    Re: Hyperparathyroidism

    Hi there,
    I lost weight also and they suspected hpt but didn t get the diagnosis yet because the calcium(ionized) is high sometimes and the pth is suspiciously normal. I also have calciuria, high levels of 1.25 hidroxy vit D and all your symptoms. Do you have calciuria?
    I' m getting smaller(until probably I'll disappear).
    What's your pth level, if you got the result.
    The calcium you 've done is ionized or serum calcium?
    keep in touch

    Last edited by Porkyy; 02-20-2007 at 06:27 PM.

     
    Old 03-10-2007, 10:46 PM   #3
    PT6
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    Re: Hyperparathyroidism

    I had surgery for hyperparathyroidism last June. I t was a 2 year process form first noting the elevated reading and having surgery. My Ca was slightly elevated one time then stayed within normal limits but my PTH was very high (262). Just prior to surgery I developed SEVERE thigh / leg pain and significant weakness in my legs - esp. my hips. I could only walk about 20' before having to stop to allow the cramping to subside. I thought it was because of an old hip replacment that needed a revision. The orhto MD thought it was because of my back. No one connected the pain to the hyperparathyroidism. One endo said to have the surgery even though the Ca levels were normal. Another endo advised me not to have the surgery because the Ca levels were normal. I am soooo glad I had it done. I noticed the difference immediately - in the recovery room! The leg pain was GONE!!!

     
    Old 03-14-2007, 07:28 PM   #4
    Lewis68
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    Re: Hyperparathyroidism

    *****,

    My PTH was 23 one week and 21 two weeks after. BUT if I didn't have HPT, my PTH levels would be Very Low (<10 or 0). One Cal/PTH test is not enough to tell you anything. To DX you need at least three tests spaced at least one week apart. If they are consistent you have HPT, even if PTH is "Normal". I do have slight Calciuria, but all that means is your kidneys are still working.

    So, I'm waiting on my last Cal/PTH test results to come in next week, and for the surgeon to say it's a go. Then I'll be going to Tampa for surgery.

    I suggest you find another doctor who will DX you, and not wait any longer. What was your PTH level BTW?

    Last edited by Lewis68; 03-14-2007 at 07:43 PM.

     
    Old 04-23-2007, 01:25 PM   #5
    Porkyy
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    Angry Re: Hyperparathyroidism

    Hy there again,
    I got good news. I found the adenoma. My pth level was never above the upper limit and sometimes even bellow the middle value. All the test(sestamibi, mri) showed a non hpt related problem.
    The simptoms were:
    1. hypercalciuria(once, twice or three times montly);
    2. slightly elevated ionized calcium(maybe one test out of 4);
    3. bones;
    4. all the HPT simptoms except the stomac ulcer;

    I was misdiagnosed by the famous dr in Tampa(Florida) also.

    I'll keep you informed and ask me if you have questions.

    ps: go to Cuba for surgery

     
    Old 04-23-2007, 04:10 PM   #6
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    Re: Hyperparathyroidism

    Hi *****!!! I wondered if you ever found out what was going on... You said they found the adenoma, what was done for that? Removed?

    What was the non hyperpara problem?

    Who's in Cuba, name-location?

    Do you remember your reading on the ion cal?

    Also, did you have that weird brain fog, or whatever they're calling it now?

    Sorry for all the questions, but you didn't say what you did to resolve this.

    Sounds like good news

     
    Old 04-25-2007, 09:13 AM   #7
    Porkyy
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    Re: Hyperparathyroidism

    Hi there,
    DesertBloom, they suspected a non parathyroid related problem but actually it was parathyroid adenoma(the size of a small olive).
    It was found at palpation, that's why I mentioned that the imaging tests were negative(sestamibi and mri).
    As mentioned in the article bellow which I already posted(I think) once, the fact that the pth is within normal range and just the ionized calcium is slightly
    elevated once in a while, doesn t means that it isn't hyperparathyroidism.
    It is the mild form of it or the begining of PHPT(if you can call it like that because in my case it started with calciuria and nothing else aprox. 7 years ago). The bone pain began aprox. 3 years ago and is getting worse slowly but surely.
    The only doctors that know exactly what happends, are the ones from Sweden in Lund University and the ones at Dijon hopital in France. The rest are just confused doctors that don't know what they're talking about and in the top of them is the famous dr. in Tampa(Florida). Hopefully you're one of them to read this and learn. Do you know why the dr in Tampa doesn 't have negative complaints? It is because he won't operate on you unless it is obvious for everybody that it is hyperparathyroidism. How disgusting it can be!

    For the second question who's in Cuba? The answer is that there are good doctors and maybe I'll get the surgery there. No name yet.

    Regarding my ionized calcium, when it was about the upper limit which is 1.38, my value was only 1.39. I think the're in mg/dl.

    I still have everything and make efforts to concentrate etc.

    The last of your questions, what I did to resolve this(almost rezolve it because it isn't finished) is the wish to be healthy and I got informed like crazy.

    ps: these guys are right -- read bellow(it helped me a lot to resolve this problem)

    Department of Internal Medicine, Lund University Hospital , 221 85 Lund , SUEDE

    Résumé / Abstract

    Contemporary patients are often diagnosed with mild or intermittent hypercalcemia. In addition, most studies demonstrate patients with parathyroid (PTH) levels in the upper normal range. The aim of the present investigation was to define subgroups of patients with mild primary hyperparathyroidism (pHPT), which could be of importance in the decision for or against surgical treatment. Two-hundred and eleven patients, operated for pHPT were investigated with biochemical variables known to reflect PTH activity, renal function, and bone mineral content. The preoperative diagnosis of pHPT was based on the presence of hypercalcemia combined with an inappropriate serum concentration of PTH. The mean age of the patients was 64 ± 14 years and the mean serum level of calcium was 2.78 ± 0.19 mmol/L. One hundred and sixty-two patients (77%) had raised levels of calcium and PTH the day before surgery (overt pHPT), 25 patients (12%) had a normal level of calcium and a raised PTH level (normal calcium group), and 20 patients (9%) had a raised level of calcium and a normal level of PTH (normal PTH group). In four patients the level of calcium and PTH was normal. Between-group analysis demonstrated no major difference in symptom and signs of pHPT. Except for lower adenoma weight, patients in the normal calcium group did not essentially differ from the patients in the overt pHPT group. However, patients in the normal PTH group were a decade younger, and had better renal function, lower bone turnover, and a preserved bone density compared with patients in the overt pHPT group. In conclusion, the data from the present investigation show that pHPT patients with a preoperative normal PTH level have an early and mild form of the disease. Furthermore, the serum calcium concentration does not reflect disease severity in pHPT.



    bye

     
    Old 04-30-2007, 12:05 PM   #8
    DesertBloom
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    Re: Hyperparathyroidism

    Hi *****: Thanks for the info I'm going to show it to my Dr at Loma Linda Univ.

    I have a some of questions, if you don't mind.

    Are you taking any calcium? Are they going to remove the adenoma? I see your in CA, did you go to any of the Univ Med Centers for this prob? Sorry for all the questions, but as you know this situation is very annoying, and I can't get anyone to look towards the parathyroid without the count being either low or high. I can't remember my numbers on PTH, but I remember they have always said it was normal. My calcium, was 5.7 mg/dl (ionized) only and total and urinary is always normal.

    If your's was found with palpation, would an ultra sound show anything? I've never had *any* scans on it so far because of the normal reading.

    I don't know much about the Dr in Tampa other than what I've read on their web site.

    Thanks again, and let us know if anything changes okay...

     
    Old 04-30-2007, 09:09 PM   #9
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    Re: Hyperparathyroidism

    Hi Lewis..I never had a high pth level. I had all the symptoms listed at parathyroid.com and high calcium plus each of the symptoms you named. Had surgery by the genius Dr. Norman to remove a large adenoma. All symptoms now resolving. It is well worth looking into him and his site.
    Good Luck.

     
    Old 05-03-2007, 08:41 AM   #10
    Porkyy
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    Re: Hyperparathyroidism

    Hi DesertBloom,

    The answer for your first question was regarding calcium suplements which I took for a while and believe me I didn't notice any changes(it was even worse---the ionized calcium was a little higher then before and the lithiasis got worse eighter).

    They will remove the adenoma but not here because it wasn t relevant that I have it for them. I mean that they took this conclusion due to the fact that I never had a high PTH(the higher was one result close to the upper limit and the most of them were a little above the average for ex: 38 or 37), never had a high calcium except the ionized a couple of times, I had negative sestamibi(two of them), a negative mri etc.

    The question regarding seeing Univ. Med. Center, the answer is yes(two centers, not only one), and they both got me misdiagnosed. There's gonna be a big scandal.

    On this continent, unfortunately, medicine began a business. There're still good doctors in Europe and Cuba. I'm very disapointed.

    No I didn 't do an ultrasound. No time and they gave the sestamibi and mri because I asked. They didn't consider that that's necessary.
    But it was necessary for me to loose bone mass, to be dizzy etc and to suffer.
    Regarding the dr in Tampa, I tought that he knows what he is talking about but I realized that he won't get the surgery on you unless it is obvious for every doctor that it is hyperparathyroidism. One more thing about dr. from Tampa - I asked for the emails of some of the ex-pacients he had but Kelly said it is imposible to find their account and gave only one which nobody answered. The biggest scam perhaps I've got involved in when decided to go there.

    ps: I don't remeber if I mentioned but I had calciuria and high levels of 1.25 hodroxy vitamin D.

    Don't hesitate to ask me if you have any other questions.

    good luck

     
    Old 05-03-2007, 03:47 PM   #11
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    Re: Hyperparathyroidism

    yes, i lost 10 lbs. Had all the symptoms, calcium fluctuated from high to normal thankfully I persued it with an endo. Scan and ultrasound showed one bad gland, all 4 were discovered bad during surgery. Had 3 1/2 removed. Some symptoms improved right away....still waiting for bone/muscle pain to go away. It's been 2 weeks since surgery.

     
    Old 05-03-2007, 03:51 PM   #12
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    Re: Hyperparathyroidism

    lost 10 pounds and some height due to osteopenia

     
    Old 05-04-2007, 06:54 PM   #13
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    Re: Hyperparathyroidism

    Quote:
    Regarding the dr in Tampa, I tought that he knows what he is talking about but I realized that he won't get the surgery on you unless it is obvious for every doctor that it is hyperparathyroidism.
    I'm sorry porkyy I realize you have a complicated case, but I have to disagree with you on this. I had no doctor support and just some labs showing high calcium and a dexa scan. My own doc in fact did not believe I had this disease. Never had a high pth.
    Dr Norman took me anyway. I am one of the few whose tumor did not show up on the scan but he found it deep in the neck with the radioguided nuclear probe that he invented and patented.. He is brilliant and caring IMHO.

     
    Old 05-08-2007, 12:10 PM   #14
    Porkyy
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    Re: Hyperparathyroidism

    Hi Olivette,
    you have the right to accept that he is a good doctor as long as he helped you, but he didn 't help me and he made me believe that something else is happening to me.
    I have their writen answer.
    Imagine that with slightly elevated ionized calcium levels, DEXA, calciuria, normal PTH, all the PHPT simptoms and the fact that I feel it in my left hand side of my neck(when swallow and palpation), he concluded that I'm too young to have it and refused to listen to me when trying to explain what I feel. The also refused (his nurse Kelly) to give contact emails from previous pacients who agreed to make them available for the public.
    I consider that you can also agree with the fact that I WAS MISDIAGNOSED BY HIM.
    Good luck to everybody and read my previous posts to learn more about weird PHPT situations.
    I'll get the surgery soon and then I'll get back.

    Last edited by Porkyy; 12-06-2007 at 08:11 AM.

     
    Old 05-12-2007, 08:28 PM   #15
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    Re: Hyperparathyroidism

    Porkyy...good luck with your diagnosis. I know this is a tricky disease. But right on Dr Norman's site he has a testimonial from a 12 year old boy he operated on and mentions a couple other children having it, so I find it hard to understand why he told you you were too young to have it. It just seems there is more to this.
    Let us know.

     
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