Discussions By Condition: Medical Errors

primary parathyroid hyperplasia

Posted In: Medical Errors 2 Replies
  • Posted By: gluck7104
  • July 16, 2008
  • 10:38 PM

I was pretty healthy growing up. However, when I had my first child provlems cropped up I was 19 years old. It began with fluid retention and constipation. I was referred to a 'specialist' he said my kidneys were fine. I too had terrible post partum depression. I got better but those 2 problems got worse. I also had a few misscarriages. I delivered my second child he was placenta previa and almost died. I gpt so ill and I cried often as well the sporadic shaking began and my ability to stand for any length caused a great deal of pain. I had a nervous breakdown. The doctors began to tell me ITwas all in my head and put me on various anti depressants and tranquilizers. My mind was not functioning as well by then. I was losing my memories My 3rd child I vomited morning, noon and night. The doctor said I was B12 and iron anemic. I got injections but continued to vomit the entire pregnancy and after the delivery I lost 20-25 lbs during my pregnacy from not being able to keep food down. The doctors just quit helping me . They milked the system though and finally It was discovered after several fractures in that year that I had osteoporosis. I was 32 or 33 then.NO one cared WHY I had it. my 4th child was born with a 2 on the apgar he looked like he would die, usually they do with that low of an apgar. He stayed in intensive care for several weeks. My nerves were shot by then I cried often and became more confused. I had had pain over both of my kidneys for many years by then but as usual the doctors thought I was a hypochondriac. My 5th child was born . I finally was diagnosed with CONGENITAL kidney disease Medulary sponge kidney. The only complications of this disorder is if I develope kidney stones. They still denied I was ill Finally a doc did an exploratory(tricked into it)He found that both my kidneys were scarred from an infectious process that took 6 months of antibiotics to take the infection out.and packed with stones. I had at that time 60percent total function, I was 35. I could not focus. I slept only 3-4 hours max a night since I was 30 after my 3rd child. I am now 54 and after many years of degradation and eventual blacklisting from the SPOKANE 'doctors' In 2005 I did research for the pancreatic stones, the aortic calcification the kidney stones the memory loss the multiple fxs, the high risk pregnancies, the horrible bone pain and the psychosis...I, in 3 months and after over 50 hospitalizations and surgeries to my pancreas discovered a disease that each oif these health problems fit into. primary hyperparathyroidism. EVERY PROBLEM was attributable to this. The doctor ran a test and my paraathyrod was at 171 the high measurment is 65. I looked up what was the best way to confirm the diagnoses. A sestamibi scan. The same 'drs' that could not diagnose me for 33 yearss said the sestamibi was negative for this disease. I had 18 procedures in Seattle for pancreatic stone removal by an awsome brilliant DOCTOR. I called him I knew these soctors collectively were MURDERING me I was scheduled for another removal as well finally sent to an endocrinologist and it was confirmed I DEFINITELY had primary parathyroid hyperplasia. They removed 3 and 1/2 glands. I slept for the fist time in 22 years for the ENTIRE night, my mental health is much improved and I had no idea how much pain I was in until about 1 year after the surgery I realized my bones werent hurting hardly ever...my glands that I kept telling them(over150 doctors)were swollen are flat and no pain. My allergies that they medicated me for years are virtually gone. The saddest thing for me is that I am in 4th stage renal failure due to the stones and I know I am being left to die here in Spokane because the physicians are apathetic and I am being penalized for the psychosis I exhibeted prior to the surgwery. I am too sick to doany thing on my own and can find no advocacy. I just want you all to know that if you or someone you love is mentally ill PLEASE know that many physical illnesses cause mental illness. Endocrine disease especially.Parathyroid tests are not routinely done it takes an astute diagnostician to order this test. GOOD LUCK Linda:mad:

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  • I was pretty healthy growing up. However, when I had my first child provlems cropped up I was 19 years old. It ... I cannot thank you enough for posting this heartwrenching story. You see, I too suffered for many years before self-diagnosing my HPT (Hyperparathyroid) disease (and am continuing to deal w/many of the domino effects). Like many, I had been misdiagnosed with Fibromyalgia, Chronic Fatigue Syndrome, IBS/CV, GERD, "depression" (to name a few). The only thing the drs did get right was the severe Osteoporosis. Not once was my high calcium or Low Vit D mentioned as a possibility of this disease & then in 2008 when I was, again, mistakenly given bisphosphonates to treat the bone loss (something NEVER to be done w/an HPT patient) nothing was said. I was given massive doses of Vit D 2x week & now know other patients have experienced strokes because of this. I've also experienced severe chest pain for ten years & found out it was because of the beta-blockers used for my HTN (again, a beta blocker should not be used in conjunction w/HPT or known kidney "fatigue/failure") It was not until I obtained copies of all my medical records & poured over them AND the internet, that I was able to get the appropriate help. I was at least fortunate enough to have the offending parathyroid adenoma surgically removed this year. Never did I dream about the nightmare of this disease (or the residuals), nor did I realize it is NOT RARE at all, but tremendously overlooked by a misinformed medical community.I've learned to place a little less blame on doctors, only now, since learning they simply follow the guidelines set forth by the NIH (Nat'l Instit. of Health). These guidelines are plainly WRONG. They are under the mistaken impression that a calcium level anywhere in the ten (10) range is acceptable (and sometimes, high 9's). I post on a parathyroid support and awareness page that list 100's of people w/successful surgeries whose levels go back to the mid nine (9) range once their tumors have been removed! Not only am I encouraging people to lobby for change of these guidelines, I am also writing a book chronicling our stories and struggles. God Bless you for posting this for all to see and I am so sorry that we are placed in the position to have to advocate so hard for ourselves when we are so sick. I hope it is not too small of a consolation to know that you have helped to spread awareness and we owe you a debt of gratitude for that! I will keep you in my thoughts...Angelia Sherertz, Wichita, KS
    firebird56 14 Replies
    • December 28, 2010
    • 07:18 PM
    • 0
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  • I am gluck7104 I no longer have this Id I am more ill and extremely physically fatigued I contacted a severe systemic fungal infection since 2011 after being the unfortunate residence that was a mycotoxin palace Plumbing leaks etc I too contracted some parasitical infestation and the doctors NOW have me Labeled as parasite psychosis I am scarred from head to toe I am a VERY Unfortunate My honesty about my illnesses has gotten nothing but demeaning disregard I keep hoping I know GOD cares.
    tenacious218 1 Replies Flag this Response
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