HPTH Misdiagnosed for years...... A Letter to my doctor, anyone feel me?
Dear Dr. H,
It has been two or three years since I last saw you, where your advice had me admitted to the psych ward….where I was put in a straight jacket and tortured by staff and other patients for seven days. No, they didn’t rip off my toenails one by one, but it sure felt that way.
I am sure you will not soon forget the drama I brought to your office during a horrible display of pain and emotion just after having a spinal block and spinal headaches. You had referred me to the pain clinic, right after our visit…they turned me away because I had been diagnosed with fibromyalgia…and did nothing for me that day, nor any other day that I sought help for my symptoms from multiple doctors and multiple hospitals between 2000-2008.
My question is this. Did you ever think to check my PTH level? My diagnosis is HPTH, hypercalciemia, osteopenia, and my vitamin D level is only 11. I also have two thyroid nodules, one that is suspicious for cancer along with suspicious lymph nodes nearby.
Below is a letter I submitted on the web form to the office of the Dean of UAB; If you can help me at all with any of my current questions, or assist me with getting the MIRP in Birmingham for HPTH through the Birmingham VA, please contact me, otherwise, please pass along the knowledge this email provides as far as diagnosing future cases of HPTH to your colleagues.
There seems to be an overall general lack of knowledge regarding this condition citywide, even the endo’s at the VA seem clueless to me and know no more than the two days they spent covering it in school. I am being facetious….of course, but in my opinion there is no such thing as a “mild case” of hyperparathyroidism, when my symptoms are severe, and how you can have a “mild” tumor wreaking havoc on every vital system in the body is beyond me.
No one should be treated as I was….the answer was in a simple blood test all along, the PTH + Ca + Vitamin D. If both of the first two are high…there is but only one diagnosis in 95 percent of cases, and as I have learned, you doctors love your percentages when it comes to diagnosing! I cant tell you how many times I have heard, “Oh, it couldn’t be this or that, that is really rare…..”.
In the end, I had to diagnose myself, after years of searching for answers, and even going back to school to learn medical terminology, pathology, anatomy and physiology, and then by documenting my own symptoms, walking in to the VA and asking for the blood work to be done.
It has been an exhausting and painful journey, and all I want now is my life and health restored so I may have twenty years left to rebuild my reputation and personal finances before I retire….we had to file bankruptcy just one year ago due to my inability to work and be a productive human as I was until the age of 34. I am now 45 years old, and I feel robbed of my livelihood due to this disease and the inability to get a diagnosis sooner.
In addition to losing anything I had gained of monetary value, I nearly lost my husband of twenty years because he started believing it was all in my head too, since every doctor seemed to say the same. Thank God he didn’t give up on me, as the rest of my family did years ago.
My vindication is bittersweet.
Letter to Staff of UAB:
I am a veteran and have a surgery scheduled with Dr. W on Jan 10.
I have been diagnosed with HPTH, Thyroid nodules (2) Bilateral upper poles; one hypoechoic, irregular borders, solid nodule, upper left pole at .9cm, with 1.25 cm left jugular lymph chain. My calcium is 10.4 and PTH 97, and DEXA shows osteopenia.
My symptoms have been well documented for years, and I have been told by many specialists at the Kirklin Clinic that my symptoms are all in my head so many times I could scream. Mistreated in the ER multiple times as well, as a patient seeking pain meds and I don't appreciate it one bit.
I was abused and mistreated during my 7 day stay in your "mental health ward" during 2007-2008...and diagnosed with PTSD, somatoform pain disorder.
I wonder if they even ever checked my calcium and PTH before dolling me out hard core psychiatric drugs that caused me horrendous adverse side effects.
I have been to UAB multiple times during my illness between 2000-2008, and was never diagnosed with HPTH...don't think they ever checked it, instead I was looked at as a mental patient with fibromyalgia, neuralgia, chronic fatigue, depression, insomnia...IBS, etc.
I could go on with the non lab or radiological labels doctors use when they just don’t know what it is….and give a pat on the hand saying its just menopause or depression…”here take this, you will feel better;.”
I have been sick for more than ten years. I am very angry right now, yet feel vindicated at the same time….knowing there was something seriously wrong with my body, not my head, and yet, no one ever thought to check my PTH level?
Dr. W wants to do a full exploratory surgery on my neck. I want to have the MIRP minimally invasive procedure - for MANY reasons.
Dr. W says that since my sestamibi scan was negative that he cannot do the MIRP, suggesting that I have 4 gland hyperplasia. The research shows me the chances of that are less than one percent....the chances the sestamibi scan was done improperly at the VA is 67%.
Does UAB offer the MIRP at all? IF not, why?
Since the delay of my diagnosis....I have lost everything; my home, my job, my credit, and nearly my life, due to being given high doses of mental drugs.
Your hospital is not the only one who missed my disease; I went to all major hospitals and “specialists” in Birmingham, while I still had insurance. Now I only have my VA benefits, and my options are VERY limited.
I urge you to check all future patients for PTH levels before you put labels of non verifiable diagnoses on them as mental, fibromyalgia, or chronic fatigue!
And please....offer the MIRP; I really want my life back with minimal risk and down time.
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