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  • HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

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    Old 09-26-2008, 12:16 PM   #1
    wedge39
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    HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    I am a 27 year old male, and have had a high blood calcium level since my first adult blood test in around 2002. I have been seen by 3 endocrinologists all of whom say I do have not Hyerparathyroidism (HPT), but instead have Familial Hypocalciuric Hypercalcemia (FHH). In other words, I have an asymptomatic condition, a genetic disposition to high levels of calcium, and should not be experiencing any problems because of it. They base this on my High Calcium Level, normal Parathyroid Hormone Level (PTH) and Low Urine Calcium Level. I also had a Sestamibi scan which came back negative.

    However, I seem to have a lot of the symptoms of HPT. Including, Osteoporosis, Osteopenia, acid reflux, IBS, headaches, loss of energy, trouble concentrating, don’t sleep well, often tired. The only one, of course, of general concern to the endocrinologists is the Osteoporosis, which they say is a coincidence, unrelated, and don’t really know what the cause is. Two want me to go on Osteo meds, the third wants me to now see an Osteo specialist.

    I have read all about HPT on-line, including on Dr. Norman’s site at Parathyroid.com, which pretty much seems to at least throw suspicion on everything that the other doctors are pointing to as indicative of my not having HPT. The only problems with Dr. Norman is he’s located in Florida, many of his fees are not covered by medical insurance, and are due whether he ends up being able to help you or not.

    Before I spend the money to go down to Tampa, I was curious if anyone has had similar lab results as mine, and then found they do have HPT. Especially if you have then seen Dr. Norman, with good results. Or, if anyone can point to any articles that talk about results similar to mine.

    I have recently found out that you can get a genetic test for FHH, which I will probably request. However, my latest endo doctor has already said that it can come back negative, and you can still have the condition. Unfortunately, that seems to be the case all around.

    Most of my recent test results follow. Any thoughts are appreciated. Thank you!

    11/22/05 – Calcium, Blood – 11.1
    01/04/06 – Calcium, Blood – 10.7
    01/04/06 – Calcium (Ionized), Blood – 6.02
    01/11/06 – Calcium, Blood – 11.3
    01/11/06 – PTH Level – In Normal Range
    01/26/06 – Calcium, Blood – 10.7
    01/26/06 – PTH Level – 29
    02/02/06 – Calcium, Urine – 49
    11/21/06 – Calcium, Blood – 10.5
    03/24/08 – Calcium, Blood – 11.0
    06/29/08 – Calcium, Blood – 11.4
    06/29/08 – Calcium (Ionized), Blood – 6.0
    06/29/08 – PTH Level – 27
    06/29/08 – Calcium, Urine – 49

    Last edited by wedge39; 09-26-2008 at 04:51 PM.

     
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    Old 09-27-2008, 09:48 AM   #2
    mmee
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    wedge39,
    I am so sorry that you are not feeling well. I am scheduled for surgery in Tampa in October.
    I was wondering about your urine calcium test. Is the range on that 100-300? Does anyone else in your family have FHH?
    I would request the genetic testing on FHH, but your calcium levels are quite high. I am not sure that FHH calcium levels go into the 11's, but I am not sure. Plus your calcium levels fluctuate quite a bit, and that would seem more like primary hyperparathyroid than FHH, to me. But that is just my opinion.
    Keep us posted. I know how terrible it is not to feel well for so long.
    Good luck.
    mmee

     
    Old 10-14-2008, 11:02 AM   #3
    hsco123
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    wedge39:
    Sounds very frustrating for you. I am a 29 year old female and was recently diagnosed with this myself, so I understand how alarming and costly it is at this age. I had a similar concern re: Dr. Norman (paying the $1250 fee w/o knowing he would operate). I sent him a quick email asking what % of people paid the fee that he would not operate on, and he said, "If you have hyperparathyroidism… then you qualify to have surgery with me…. Its as simple as that." (pasted from his email). I also included in my initial email my lab test results, and he said if those results were true, he could almost guarantee I had hyperparathyroidism.

    I would suggest putting the text you posted in an email to him, and just asking his thoughts. He will respond, and it's free. And although the cost is high, I think sometimes these things are just worth paying for to feel better. I'm having surgery during the first week of November. Can't wait!
    Good luck!

     
    Old 10-14-2008, 11:36 AM   #4
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    hsco123:
    I also have been having very serious problems. Started losing weight rapidly last year. MY dr sent me to an endo dr and she told me I was a type 2 diabetic. She ordered CT scan, Endoscopy, Bone scan, Colonoscopy, and blood work 7 times. All of my levels were normal but I did have a gastric ulcer which was found during the endoscopy. My sister had been sick for many years too but she found Dr. Norman and sent her information to him. He did tell her she had parathyroid and so she went to Tampa. The surgery took 17 minutes and she has never felt better in her life. She told me to e-mail Dr. Norman which I did with all my levels and results. He e-mailed me back saying I do not have parathyroid but that I should have the sestemibi scan one or two more times. No one can lose so much weight so quickly and have everyone tell them things are normal. IF they were normal I would feel and look normal. I hope you find out what is wrong and I know that DR. Norman will change your life if you do have parathyroid. He is suppose to be the best there is. Best of everything!!!!

     
    Old 03-30-2009, 06:47 PM   #5
    lori120
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    Sounds like what I might have. My endo just told me I have Familial hypocalciuric hypercalcemia also and I many of the same complaints you do. Although I was not tested genetically. No one in my family has it. Doc says it could be from a relative way far back. The question I have is that I read that a person is born with this. I'm in my 50's and in all these years I never had a problem with my calcium until a few years ago. Now I'm osteoporosis and I lost 10% of my bone in the past year. Does this make sense?

     
    Old 04-07-2009, 06:39 AM   #6
    wedge39
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    According to the majority of information on the web, and every doctor I've seen, FHH is asymptomatic -- meaning no symptoms. So it will not cause bone thinning, or any of the other symptoms of high blood calcium. Also, you would have had it your whole life, so (again my understanding) is that your blood calcium would have been high your entire life, almost no exceptions. So if you have had calcium screenings before, and they were consistently normal, you probably would not have FHH (unless you had some other complicated issue that was also supressing calcium). If your doctor is telling you he thinks you have FHH despite this, I'd get a second opinion.

    I'm on my fourth opinion (5th if you count the gastroenterologist who ruled out Celiac Disease which can cause osteoporosis), with a doctor at one of the more highly regarded hospitals in Boston, who specializes in this area, and he's still not convinced I don't have HPT. He's also already said if he rules out HPT, he'll do the genetic test for FHH (which all of my other doctors said was unnecessary based on the results). If I have it, I've still heard of cases where you can have FHH and other issues that are causing problems (such as HPT!). At any rate, he also says he knows an FHH specialist I can go to.

    Based on my experience though, and what I've read, get a second opinion and ask for the genetic test! FHH is supposedly very rare. Yes, I've heard you can get false negatives, but if its positive, its positive -- so why not have the information?

    On a side note, I have not been able to bring myself to go to see Dr. Norman. Although there is admittedly a lot of positive success stories out there, and it seems like he's gotten a lot of press, there are too many things that make me not want to take the risk (healthwise or financial, as he requires an upfront fee that is not covered by any health insurance -- that's a rarity). Amongst other things, he's a surgeon so him saying surgery is the answer is pretty likely, there is a growing minority who complain that he said he could help them then didn't, plus has a horrible post-op attitude, not to mention that like many companies out there, there are supposed "testimonial" sites for him, that (after doing a simple WHOIS search) appear to be from domains that are registered to the same address/contact info as his own domain! I find that very sketchy, and very scarey.

    Last edited by wedge39; 04-07-2009 at 06:41 AM.

     
    Old 05-14-2009, 06:33 PM   #7
    samtonyclare
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    Just today I got the results of my genetic test for FHH. This focuses on the CASR gene. My result "possible, but uncertain". That dashed my hopes of getting a decisive decision. I didn't even know that such an outcome was possible. They did notice a sequence variant, but they don't know if it is associated with FHH.

    Any expert out there know what "c.2111T>C" means?

     
    Old 07-04-2009, 02:26 PM   #8
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    I do not know if I have been tested for FHH but I have had blood work done 9 times and thyroid and parathyroid test's run. All negative. I am seeing a new gastro dr and she is completely dedicated to finding out what has made me so sick for two years now. I had a endoscopy last week and all negative results for cancer or anything else. Very relieved!!! I see her again next Thursday and we will decide on next step. She also made copies of all 62 pages of procedures and test's done and said she had been studying me. Very glad that I have found someone who truely cares. Will let you know.

     
    Old 07-08-2009, 10:03 PM   #9
    lch
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    I have recently been diagnosed with HPT. Upon studying my labs from the last 3 years, I have discovered that my calcium level was as high as 11.2 in 2006. I am now seeing an endo and have had the urine collection test and the sestamibi scan. All show HPT including the scan showing left lower gland enlarged. Endo recommends surgery, but has advised me that my level of HPT is not high enough to cause symptoms, ie head ache, nausea, elevated blood pressure, weakness, fatigue, etc. I am worrying about surgery since it seems like it may not help alleviate my symptoms. If anyone has had the surgery, can you tell me you are now symptom free?

     
    Old 09-10-2009, 07:30 AM   #10
    1lesspara
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    Wedge39,

    Don't give up trying to get someone to listen and diagnose your problem correctly. I have had a horrible time getting diagnosed with HPT.

    My problems started 2 years ago with my normally low blood pressure fluctuating between high and low. I had lots of other symptoms such as joint pain, bone pain, osteopenia, anxiety, depression, couldn't concentrate, and just an overall sick feeling. I asked my doctor to do blood work. My blood calcium came back 10.2 high normal. They said everything was normal. I had a sister who had HPT so I knew that someone with blood calcium of 10.2 could still have an adenoma so I asked to have my PTH checked. It was 70 so they referred me to an endo. He said I was just vitamin D deficient. I refused to take the mega doses of vitamin D. Went to two more endos who said there was nothing wrong with me because they did blood work which came back serum calcium 10.2 PTH 38.

    While visiting in Australia, I fell and broke my ankle. The surgeon said I had sever osteoporosis. I was so sick while trying to recover from the broken ankle. Had to go and stay with my sister in Texas to rehab and try to find someone who would do something about my undiagnosed HPT. As it turns out, after several more blood tests where my calcium stayed at 10.2 and my PTH fluctuated, my sisters ENT decided the only explanation for all my symptoms was HPT. Guess what! He was correct and on November 20 2008 I had a parathyroid adenoma removed.

    I felt great for several months and then my blood pressure started to go crazy again. Back to my doctors here at home and more blood work. First test calcium 9.4 and PTH 68. Next test calcium 10.2 and PTH 70.8. Went to an endo at a leading hospital and guess what he said. Vitamin D deficiency. Is this sounding familiar. At present I am having all the old symptoms of HPT and once again can't get anyone to diagnose the real problem. I plan on seeing Dr. Norman with hopes he can figure this all out. Most endos just don't have enough expertise in this area. I really think there are lots more people with HPT that never get past that first blood test because they are told it is normal and they never question what those results really mean. There are so many people with osteoporosis that I really think probably have HPT but never get diagnosed with HPT and their bones just get worse and worse.

    Anyway, I hope my story prompts you to keep advocating for yourself untill someone gives you a diagnosis that will address your problems.

    1lesspara

     
    Old 09-19-2009, 09:46 PM   #11
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    Wedge
    I would persist too in seeing doc norman. I too had high calcium on and off for over 10 years and normal pth, the scan did not show it and yet and I did have a large adenoma. Also had all the symptons mentioned by Ich and more. Good luck to you. I understand your frustration.

     
    Old 04-09-2011, 04:08 PM   #12
    mj 23
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypocalciuric Hypercalcemia?

    I am a 45 year old female and I just got diagnosed with FHH after a year of testing, i.e., blood test every 3 months, sestamibi, 24-hr. urine and finally the maligancy testing which all came back negative. The doctor said I should be asymptomatic but I know myself better and I got most of the symptoms that you are also having. I want to know how you are doing. Did you get a second opinion? Did you get the genetic testing? It's been 3 years since you posted, do you still have any symptoms? Hope to hear from you and thank you for your time.

     
    Old 04-18-2011, 11:32 AM   #13
    fobo
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    Re: HPT vs. FHH: Hyperparathyroid or Familial Hypercalcuric Hypercalcemia?

    I got today a blood Calcium result of 10.7
    I am a 27 years old male. In last 15 months have had lot of health complains, mainly low abdominal pain with frequent urination and thirst. Lots of diabetes tests and ultrasound came back normal.

    I have read that Polydipsia and Polyuria might even be a sign of Hyperparathyroidism.

     
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