I have MEN1

I have been trying to sort out whether I have hyperparathyroidism (HPTH) for almost a year now.   Hyperparathyroidism is tumors in the parathyroid glands.  The tumors cause the parathyroid glands to produce too much parathyroid hormone (PTH).  The sole function of the parathyroid glands is to regulate calcium, so patients with HPTH end up with levels of calcium that are too high and high calcium, in turn, makes them sick.

I have had my calcium and PTH checked 14 times since November 2013.  And there has been a clear trend.  First, my calcium increased by almost a full integer (calcium typically remains in a very narrow range, fluctuating up and down by 0.2 or so).   Then, my PTH slowly inched up as this new calcium level remained roughly the same.

Despite being told repeatedly not to worry about this (including quite recently), I was always suspicious.  As was the case when I had Cushing’s,  I did my homework and read extensively – the experiences of other patients, the very informative website put together by a well-known parathyroid surgeon, Dr. James Norman (www.parathyroid.com), and medical research.  I discovered lots of patients had HPTH with labs that looked pretty similar to mine.  Mine were definitely on the lower end in the beginning, but the trend over time was pointing more and more towards HPTH.

Based on my labs in 2014, I got into a study at the NIH on hyperparathyroidism and MEN1.  But I was told I didn’t have it while I was there.  The worst experience I ever had with a doctor in history, and I have seen A LOT of doctors, was with a local parathyroid surgeon that I consulted with after my trip to the NIH.  He not only refused to look at my PTH labs from outside his hospital but also said, to my face, he didn’t think I had Cushing’s last year and that I should “go home, live my life and stop chasing problems that don’t exist.”  This was seven months ago and I was very sick at the time (I am still pissed about this.  Not helping a patient is one thing – attacking them is another).

Because I was not convinced I didn’t have HPTH, I decided to go ahead and get another opinion anyway.  Just to be clear, and as I have said many times before, I didn’t WANT HPTH and I wasn’t convinced I had it either.  But I did know I was very sick, some of my symptoms were consistent with HPTH, and these labs (along with my bone turnover markers and my ALP) were the only ones that were coming back abnormal.  So the only logical thing to do was to continue to chase this down.  What else was I going to do?

The parathyroid surgeons I consulted with this winter agreed that my case was not a clear-cut case but was certainly suspicious and they ordered more tests.  Right around this time, I started having severe problems with what I would later learn was carcinoid syndrome.  Since parathyroid tumors are typically benign and carcinoids are neuroendocrine cancer, I decided to put the investigations into HPTH on hold while I focused on the carcinoid.  So I didn’t complete the PTH tests.

Fast forward to July.  Thoracic surgery to remove what we suspect is a thymic carcinoid is behind me, I am investigating the masses in my sacrum and the bone doctor orders another round of PTH and calcium tests.  I see that my PTH has tripled since it was last tested this winter.  I am of course excited by this news.  This confirms my suspicions.  When I see the bone doctor on follow-up he tells me he doesn’t think I have HPTH.  I politely tell him I don’t agree, but don’t push the issue as I really want his opinion on the masses in my sacrum.  And I send my new labs back to the surgeons I consulted this winter and I finish their tests.

Shortly thereafter, I get a call from the parathyroid surgeon:  I have been diagnosed with HPTH based on my new labs and the trend in the labs.  This time, the surgeon is definitive about the conclusion:  there is no doubt in his mind and there is no doubt in mine either.   The surgeon tells me that my labs are most consistent with parathyroid hyperplasia, which is a situation in which all of the parathyroid glands tend to become enlarged (as opposed to having a solitary adenoma on one parathyroid gland).  This is a relatively common form of HPTH in MEN1 patients in particular.  Because of this, all four of my parathyroid glands will be thoroughly examined during the surgery and all of the enlarged ones will be removed.  Because I am a tricky case, my surgery will occur in the hospital rather than at the surgeon’s private surgical suite.  The surgery itself is very straightforward and non-invasive.  I am not worried about this part at all.  I will post more about this later.

Given my history of pituitary tumors, a diagnosis of hyperparathyroidism confirms the clinical diagnosis of MEN1.  Add to that the carcinoid and the nails are firmly hammered into the coffin.   I feel a mix of relief, shock, fear, anger and sadness that I had to fight this hard to figure it out and that this is indeed what is wrong with me.   This is a scary diagnosis, and although it is one I have been worried about for a year, it is going to take time to accept it.  But I have had to accept lots of other things over the past few years and I tell myself that in time I will accept this too.

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2 thoughts on “I have MEN1

  1. (hugs)
    I share ALL of the feelings you just expressed. The anger I have for doctors at this point is “off the charts!” I had to fight for every single diagnosis I ever got. Quite ridiculous.

    Good luck, Shannon! I’ll be following your journey! ♥️

    Amy Restad

    Like

    1. Thanks Amy. I have been following your journey as well and know you can relate. I am rooting for you too. I wouldn’t wish this on anyone, but it sure is nice not to feel alone.

      Like

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