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Thyroid Disorders Community
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187722 tn?1280496986

Parathyroid hyperplasia or multiple endocrine neoplasia?

I had surgery at Davis Island (Tampa General Hospital) to remove beign two thyroid nodules and two parathyroid adenomas in 2006. The third parathyroid gland was checked, but the fourth gland was not checked due to the thyroid nodules.  I now have clinically elevated parathyroid levels and clinically elevated serum and urine calcium levels,  I have signed up for clinical trial on hyperparathyroidism.  Please, if possible, tell me of another resource for surgeon on the minimally invasive surgery for a second surgery for parathyroid hyperplasia.  I have also had blood drawn for multiple endocrine neoplasia 1 and the Hyperparathyroid jaw-tumor syndrome (from the clinical trials).  I feel awful most of the time... no energy, chronic fatigue, memory problems, kidney stones, (mild) high blood pressure, elevated cholesteral levels, tingling all over my body from head to foot for 15+ years, tinitius, bilateral hearing loss, and essential tremors.  I have been to a major medical/research facility in Jacksonville with numerous tests.  Where can I find someone qualified to operate the second time or do I need to wait on doctors at clinical trials in Bethesda?  I had elevated calcium for 15+ years, but the local internist did not do anything about it.  Now I just want these health problems resolved!
13 Responses
Avatar universal
Are you near Tampa currently?  What about Dr. Norman, who has the parathyroid web site.  Isn't he near you?
187722 tn?1280496986
Many thanks for the quick response.  Dr. Norman's associate (Dr. Politz) did the first surgery and did not check one parathyroid gland.  I can only guess that when he removed the two thyroid nodules, that he thought one of the tumors was a parathyroid gland.  Now my parathyroid levels and calcium levels are clinically elevated again and I will need surgery a second time.  I have been to Mayo and the endocrinologist won't do anything because he says that the second surgery is very complicated.  I finally told him about the clinical trials, because most endocrinologist do not know what to do with parathyroid paients.  Our problems rarely involve cancer, but we feel awful most of the time until these parathyroid adenomas (abnormal glands) are removed and or transplanted.  I was told that this time, I probably will need the remaining two glands removed and part of one gland will need to be transplanted into my arm or chest.  I do not know if Dr. Norman can finish the job.  I also found Dr. Norman on the Internet because of his good reputation, but my case is not that simple.  Many thanks again!
Avatar universal
It's disappointng to read you didn't have the best experience.  My heart goes out to you because I know what grief all this can cause.

I know a second surgery has complications, but it does seem possible (from my naive eyes, anyway), at least to transplant the one good gland.

Does the trial you're looking into involve surgery?

Sounds like you're just going to have to keep making inquiries until something turns up.  I will help you if I can.  I will try to make an inquiry into my own surgeon but honestly, and I feel bad saying this, he’s newer.  I do know he went to school for it in the Chicago area.  The name was (maybe) Rush University (?)  I’ll see if I can dig further.  Also, I know there are, in the northeast anyway, some really good facilities.  One is in the Boston area and affiliated with Harvard (I think a member here mentioned going for thyroid surgery).

Keep in touch.
187722 tn?1280496986
Many thanks again for writing.  I have lived with health problems for many years, as did my Mother and Grandmother.  They were checked primarily by their local doctors.  I am persistent and want answers, not continued aches and pains!  I decided last night to try Dr. Norman's office again and emailed his office.  I feel that he probably has the most experience.  My new endocrinologist is tring to help me, but even he says my case is complicated.  Since I am being checked for multiple endocrine neoplasia through clinical trials in Bethesda, Maryland, I would like a quick answer/cure. I realize it takes time, but I just have not heard from the doctors about the tests/results.  As to Dr. Norman, I do not know if he treats any patients with MEN1.  I am continuing to search for solutions.  If you find any other information/doctor, I would appreciate any assistance.
187722 tn?1280496986
PS   I forgot to answer one of your questions.  The clinical trials will repeat all medical tests and perform surgery if needed.  I only have to pay my travel expenses.  I failed to mention that I now have bone spurs in my neck (which has happened since the parathyroid surgery) which contribute to my chronic pain.  This will only get worse and spread to other bones/joints, as long as I have hyperparathyroidism.
Avatar universal
Hope you get a positive response from his office.  I'll let you know if I come across anything.  Keep me posted.  Good luck.
474135 tn?1207799903
Well for what its worth here is my tale. In 1996 I found out I had High blood calcium, so the tests began and I mean them doctors checked for everything. Here is what I can tell from memory but I have BOTH volumes of my medical record, if you want specific. I was bounced around and poked by Ear Nose and Throat, Internal Medicine, and Endocrology. With a stop here and there whenever a cancer idea occured to somebody. The conclusion of the first bunch was a surgery that took 3.5 parathyroids 1/2 thyroid and my thymus.  4-6 hour surgery actually took more 22.
So both kinds of blood calcium scores are high and my urinary calcium score is high, put the SAWBONES really get excited when they see the PTH is out of sync with the calcium see PTH should be lower when calcium goes up. Mine "high normal"
So after surgery made no appreciable difference. We got into fun things like Bone density scores, sestimebi scans, MRI with contrast, heart stress test EEG EKG and a whole of blood and urine collections. Turns out I pee like 4-5 times the normal amount cause I'm always thirsty. I take in enough salt to kill but my PB at the DR was 111/62. I have been to six different Hospitals and had 14 different DR.s I could go one for hours. my hands are tingling almost always and my feet are prone to pins and needles any time day or night. I give up the whole thing except for TWO little tidbits
1) some of the blood calcium is ionized so it travels around collecting calcium from places like bones and teeth.
2) I found out about 3 years ago my oldest son has High blood calcium ... turns out all that extreme screaming and crying he did as a newborn was actually a little thing called "Calcium Crisis"
(his mother isn't concerned about it, though because 1 doctor said my son and I were fine and I never should have surgery with out examining or my charts I mean hell I got to have 200-300 pages in just Lab Results alone.


Good luck in your quest for answers when I get settled in at my new local i'll start the ball rolling all again and check back to see if we can share any info.
Avatar universal
Thanks so much for sharing, as there aren't many of us around.  Your story is an interesting one.  Did you ever think you'd be using words like 'ionized' to describe something going on in your body?  I didn't.

Please keep sharing, as you can.
536009 tn?1293194381
Hi, read your post from April. Wondering how you made out re; seeing Dr, Norman again or not.  If not, have you seen someone else?  I hope  you are feeling better....Please keep us informed, and best wishes.      
Avatar universal
Good Lord why aren't doctors astute enough to add parathyroid testing as a routine test?  I went 35 years actively symptomatic for parathyroid disease. I didn't realize that was the problem.  The 'doctors' should have!  My synptoms became apparent during my first pregnancy at 19 years of age.  Constipation, toxemia and urinary retention.  My second child was placenta previa and almost died. The problems became much more draamatic during my pregnancy with my third child a daughter. I vomited every time I tried to eat I as so very ill I lost 20-25 lbsa during the pregnancy as well the doctor discovered that I was B12 and iron deficient so they gave me injections of those two nutrients throughout the pregnancy.  After nothing.  I had no insurance.  When my daughter was 1 year old I began working and during this time I heard a loud POP.  It took 3 yrs for it (fracture) to be discovered.  I also was not able to sleep more than 2-4 hrs a night ,often I couldn't sleep at all. Medications for allergies made me 'wired' The doctors just thought I was crazy. I began to believe it too.  Horrendous pain in my spine when I stood. My bones ached all of the time.  I was sent to a 'pain clinic' a behavioral approach was used because the Spokane Wa. doctors thought it was all in my head.  My gut hurt clear to my spine.  I felt pain in my kidneys Those incompetant docs treated me as though I was just a bother.  I had my 4th child he too almost died. He was premature and I had seizures during his birth. I began having one fracture after another between 30-33 yrs of age. scapula, ribs, both arms They did a bone density test on me at 33 .  They said it was osteopenia.  No one concerned themselves about WHY I had bad bones.  I also quit having periods, so I was not sure if I was pregnant or not.  Ialso had what appeared like milk discharging from my breasts well after I had stopped breastfeeding, no one cared.   Eventually I got a doctor to look in my kidneys and they discovered that my kidneys were packed with stones and this was after my 5th child was born. I had 60% function still remaining from my illness they said was in my head.  No one cared, no one apologized.  No one checked to see why?  I had been going to the doctors by then for many years by then I was on medicaid.  I became even more ill, just moving at all was excrutiating by this time and I was VERY angry  They still treated me with great disdain.I had breaksown after each of my pregnancies as well suffered multiple miscarriages. The doctorslabled me an alcoholic when it was discovered that my pancreas appeared calcified. I mistakenly told the truth about a very difficult time in which I drank too much for about a 4 year period of time.  I was self medicating, can you imagine the PAIN of pancreatitis kidney stones, infected fallopian tubes from an IUD that traveled.  Being treated as though I had no worth, that I was purposely createing my ills.  Many years of this NIGHTMARE continued.  I became psychotic while in the hospital with my kidneys failing and on a morphine, or demorol pain pump.  I would leave agsinst doctors orders, it was parathyroid psychosis aided by negligent drs giving me meds that caused drug induced psychosis.  Not fun.  They began blacklisting me at area hospitals.  That turned out to be a good thing for me and I began checking all the symptoms throughout the years starting with my mensral problems, constipation, allergies, metalic taste in mouth, high risk pregnancies, bone PAIN , osteoporosis, severe involuntary tremors (my right side of my entire body was shaking, the doctors saw it and would say to me'why are you shaking' letting me know that they thought I was an addict, alcoholic, Stupid *** drs.  My CNS was reacting to this disease.  Anyway I researched for 3 months. I wasn't able to sleep anyway and I had/have memory problems which prior to resolution was worse. By this time having been sent to Seattle on a doctors telling me that I had destroyed my pancreas from my 'drinking' Fortunate for me the doctor there went in and discovered NOT necrosis but rather inumerable calcium stones packed in my pancreas.  7/1/04 I was operated on by a wonderful moral doctor, I had in the year prior lost alot of weight from vomiting all the time. I had no appetite.  The morning after my daughter was sitting next to me when I awoke,. My first words to her 'Where's the steak and eggs.  We both cried. Dr. Michael Gluck, Dr. Gross, Dr. Ryan Thank you From doing all that research I was a poster child for parathyroid disease, specifically primary parathyroid hyperplasia.  The rotten Spokane Wa. doctors did a blod test it was 171, very high.  They sent me to the dept. head of nuclear med at Inland Imaging and he assured me there would be no screw up as he was the top guy.  Sestamibi was done and he sent the report to my residency clinic that I had all normakl parathyroids. They shuffled me off again. I had one of the 25 pancreatic stone removals scheduled in Seattle and my Dr. Gluck set up additional testing in Seattle at the same time as my other procedures.  Dr Gross seemed visibly irritated to see that my osteoporosis had not tipped them off. The discovered that I indeed Did have primary parathyroid hyperplasia and not the secondary kind that the doctors in Spokane were claiming. They did specific tests to prove that.I also do not have any vit d problems which comes with a seccondary parathyroid disease.  My kidneys were  NOT the cause the kidneys were badly damaged I am in 4th stage untreated kidney failure now because of collective negligence and collusion done to me by these 'doctors.  I slept the entire night on 10/9/06 for the first time in over 25 years.  Now, I tried to move and get help nearer to Seattle but my records have been unconscienably by the doctors in Spokane Wa. So that when I went to a hospital in Vancouver Wa. They sent me away and treated me as though I was a druggy trying to score!  I had a bad kidney infecgion they discharged me and told me 'that I was not going to get any more drugs'  Stunned.  I had to walk for two miles to get to a pharmacy to fill the 20 hydrocodones that I was prescribed.  Sadly this is most likely part of a syndrome called MENS 1 it is genetic and I am certain of the three children that have been affected.  These same dark doctors sent me a certified letter in 2006 refusing to ever treat me as well they mentioned two of my adult sons by name saying they do not want to treat Any of my family members.  It's the main residency program here in Spokane Wa. There is so much to this story and I am rambling.  I just need to get thios information out!  I maybe neglected and abused by the doctors here in Spokane but I am going out kicking and screaming.  My childrens lives depend on it.  I hope this helps someone.   sincere regard and God bless all who suffer at the hands of incompetant doctors.  Forgive me doctors I would not be on medicaid and dying if one of you stood up and CARED.
393685 tn?1425816122
I reccommend you coping and pasting this to your profile under journals so people can revert to it.

Every horrible story - but needs to be told and a permanet thing for people to read.

This thread will eventually fad off to other pages and this story should be under your profile.
Avatar universal
Thank you for sharing.  I read your post twice and really feel sad for what you have been through.  Unfortunately, I've come to realize that dealing with the medical world is zany, at best.

I think the one thing that gets missed, or misunderstood by the medical world, is that when a person isn't feeling or doing that well, especially when they don't even understand exactly what's going on, they're not always able to perform up to what someone else has in mind.  Reading that you got the kind of letter you describe from any medical establishment is downright tragic.

I'm glad you feel safe enough to have shared what you did.  I agree with stella5349's recommendation to create it in a permanent place for other's to go to.

You are not alone in any of this.  Take care.

~

Does anyone know why people who express unexplained pain are automatically bundled in with drug users?  I work with a woman who had this happen at an er.  Hearing that she was clumped in with that crowd was like hearing Mother Teresa being accused of such dastardly behavior!
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