How NOT to go to the ER after parathyroid surgery


I woke up on day 3 post op and started having muscle cramps in my shoulder, leg, arm, my lips and finger tips were tingling… these were things my surgeon had told me to watch for.  We called the surgeons office and he told me to see my regular doctor… so called my General Practitioner, not really understanding why since I haven’t seen my GP for weeks, but got in two hours later.  On the ride in the car there the cramping started getting worse and worse,  I was tingling and having muscle cramps & spasms all down the left side of my body and it started cramping my diaphragm which made it feel difficult to breathe.  After explaining that my surgeon had said to watch for this my regular doctor didn’t know what to do,  and didn’t have the ability to run lab results quickly, so she called 911 and had me go to the emergency room in an ambulance…  At this point the cramping and numbness or “buzzy” feeling is getting worse and worse.. partly due to the low level of calcium in my body and the other due to me getting more and more upset and freaked about the cramping..  I got there and had to repeat everything once again to the ER staff that I’d told to the Hunky firemen that drove me to the hospital… uugggghhh..

I was sure I was having a stroke or a heart attack at this point, my fingers started cramping up like I had severe arthritis… and it felt like a huge weight was on my chest.  All my vitals were normal but I was still having all these symptoms.

How to not have all of this happen? If you start feeling muscle cramps or numbness, eat another tums! Calcium with Vitamin D, etc… The surgeon should have told me that rather than just warning me to watch for these symptoms and then sending me to the doctor that was clueless.  (not her fault, this isn’t her specialty and it was impressive that she caught the condition in the first place) When the doctor in the ER finally came into the room he said.. oh yeah… that’s common with this type of surgery, (Removal of an adenoma on your parathyroid gland) just take more calcium.  Duh!

What’s really maddening was that I had that “womens intuition” that you’d think at this age I’d be wise enough to listen to and I thought when I first started having the muscle cramps…  “I wonder if I should just take some more calcium” but I was afraid to over do the calcium and figured if it was that easy it would have been on my post op instructions.

Before the ER staff could get it together I closed my eyes and prayed… “God, help me“….  I started feeling large hands on my head, cradling it and the numbness and muscle cramping started lessening, starting at my diaphram the cramping diminished, the pressure lessened, and the tingling felt like it was being drawn out of my body to my head and out…..  within 5 minutes I was almost none of the previous symptoms and just a touch of numbness in my lips and fingertips.  Was it God? Did my body just re-regulate its hormone and calcium levels on it’s own?     Next time… I plan on praying FIRST!

The rest of my Parathyroidectomy journey:

Pt 5: 2 Days Post Operative

pt 4: Tomorrow is Surgery Day

pt 3: Consultation with the Surgeon

pt 2: Appointment with the Endochronologist

pt 1: I thought it was just Menopause

Definition :

Parathyroidectomy

Parathyroidectomy is surgery to remove parathyroid glands or parathyroid tumors. Parathyroidectomy is recommended when one or more parathyroid glands are producing excessive amounts of parathyroid hormone.

Comments

  1. I’m so sorry to hear about all the worries around your surgury. I am sure God decided to give you a hand to help alleviate some of those worries. There are so many unexplainables that I just believe that someone/something bigger and better than us is there to guide us. Intuition may just be God’s voice whispering to you what you probably already know.
    Good luck with your recovery.
    Claudette

    • Chrissy says:

      Thanks Claudette, I agree with you about the voice, my pastor, John Leach, said that when God talks to him that it does sound like him..John.. not like a big booming voice… I guess spiritual maturity comes when you know when it’s your voice vs when it’s God speaking to you. Thanks for your encouragement!

  2. Wow! I can’t believe someone else feels like me! Our stories are similar and I have surgery scheduled for June 1st. I can’t wait to start feeling better. I gained a lot of weight and my tummy is huge-never been this huge before in my life! Thanks for the tip of getting some TUMS just in case. Are you feeling better? Have your symptoms gone away yet? Thank you for being there when I was searching!

    • Hi Stacey, I had a feeling that there were more of us out in the world that were clueless about this entire disorder. Tums are good for emergencies but actually an additional issue I found out was that I was also Vitamin D deficient which works to help your body absorb calcium so I’d recommend getting a good Calcium with Vitamin D and Magnesium. My endocrinologist recommended looking at Walmart or Costco. I am doing much better already and I’m sure the next six weeks will get me back to better than when I started. I’m glad I could be there for you.. check out my post on two weeks post op. http://www.thymeinmygarden.com/have-high-blood-pressure-high-calcium-levels/

  3. I had an idea while reading your post, since I am very familiar with the whole scene that you described (minus the actual thyroid situation). I think that there should be a poster on the wall in the ER cubicles, much like the ones that say “Are you in pain?”.

    It should say “Are you starting to panic? Close your eyes, take a deep breath and say “Help me, God””.

    PS – I love your blog and I found it through Tuesday Topics on Facebook. Thank you!

  4. I gathered that you didn’t have surgery through the Norman ParaThyroid Center in Tampa FL? Dr. Norman and Dr. Politz have an excellent website. ParaThyroid.com Sends each patient home with a box of calcium tablets! LOL You will go from having too much calcium, to having too little, and still having to deal with side effects, and symptoms! I have NOT had surgery yet, but have been reading, over and over, on what to expect. Keep us posted with updates! It’s been SO many years, I’ve felt bad, I look forward to surgery, but currently don’t have ins. or funds to pay for it. S.S. lists this as a disabiling condition, yet has denied me twice, I’m feeling like I might die, before they get their act together. Appealing, and asking them, to hurry up, going on 2 yrs, and have dealt with the high calcium, and high blood pressure, and PTH at 174.9 for too many yrs. (like 10 yrs) of feeling this bad, oh, and gaining weight-(over 100 lbs.) Migraines, chest pains, and aches and pains, bones hurt! Have Osteopenia. I’m only 50! This is more than I can stand, and not able to exercise, turn purple, and nearly pass out! This is NO way to live, at this point in my life. Stress over losing house, and needing help, and can’t jump through the government hoops. The fight is out of me.

  5. oh gosh Joni… that would be so horrible to have finally found out WHAT the heck is wrong with me and then not be able to afford to fix it! I was actually surprised that the surgery itself was covered so well on our insurance… the trip in the ambulance and 4 hours in the emergency room cost us almost twice as much out of pocket as the entire day and half in the hospital and the surgery combined! Something is sure out of whack considering they didn’t even do ANYTHING for me in the E.R.

    I think the problem with this particular condition is that each doctor is an expert in their area and just stays strictly within those confines. My Endo is just awesome! He’s from the older generation of doctors that would probably still make a house call if I asked him to. HE calls me personally to give me results of tests and to talk about how I’m doing, what he wants me to do next, what to expect next. When you go to his office he spends LOTS of time with you asking questions and then listening to the answers. This last visit I went in after my bone density scan and my husband was able to go with me.. so the doc not only asked me questions but asked my hubby how HE thought things had changed for me, health, attitude, pain.. not many doctors would take the time to do that or even care that much. His name is Dr. Peticia and he is the BEST! I will post soon about my test results and all of that. I’ve never heard of Osteopenia.. I will have to look that up! I too have arthritis in my hips so I understand the inability to exercise without being in pain.. and I just turned 50. We need to TALK! lol If anyone has any ideas for Joni on how to get the medical system to help her.. please post!

  6. I had a parathyroid removed 6 yrs ago and its all gone down hill. my health really never returned and the past 18 months i have fought the Doctors saying that i felt a small erruption in my throat to which my airway was constricted and then came the other nasty symptoms….Drowning sensation/allergic reaction constant right hand tonsil ulcerated/stabbing pain/Daily Nausea/cramps/palpitations/chocking and now comes the worst, a feeling of dread with fog brain/confused and a sedated feeling!!,they tried to say i was suffering from anxiety, oh another thing constant low body temoerture with irregular pariods…fit like symptoms and FATIGUE
    I dont understand this filling up sensation as if im going to drown in my own Saliva!!!
    only god knows what im going through and now i pray.X

  7. Wow. I sit and read your stories, and especially yours, Chrissy…and all the experiences told about by people in various stages and need of the parathyroid process…and it saddens me.
    I have been through hell and back again with the hyperparathyroid illness. I also know what it is like to not have the money to secure the surgery to have yourself helped by the removal of the adenomas that are surely present in most of you, if you are writing on this forum.
    I, too, am a patient of Dr. Norman and Politz in Tampa. I am three weeks post op, and all I can say is THANK GOD I had wonderful friends, an awesome Church, and caring strangers that were willing to help me. You see, when I had gone as far as I personally (and physically could), I knew I had two choices…to keep spending my 22 hrs a day in bed, weakened, fatigued like a person in their last hour with cancer, with all the other horrific symptoms that go with this disease….and probably just will myself to die, or I could do what I have been trained to do, and actually do it for ME, for once, and that is enlist friends, etc…to help me raise the funds for this surgery that, I so desperately needed, but without insurance would never get! My husband had lost his health insurance when his company was sold and then my “pre-existing” conditions were not covered…IF we could have even afforded the premiums, which were a joke!
    So I set up a fund-raiser…first with a trusted man who happened to be my husband’s contact administrator, and we asked him to be our trustee. Simple, really…he would set up a bank account, with him as the sole person who could withdraw, (we also appointed an assistant administrator, in case he became unable) and she was the one who received funds, posted them and all donor information on a spread-sheet, and prepared deposits for the trustee to deposit.
    Being as I was in the position of first, being too ill to help, if I had thought it ethical, (which I do not)..I did advice a friend that stepped in as our campaign manager and gave her a fast lesson on how to go about running an effective, speedy campaign.
    This CAN be done, since the cost of this surgery is low in comparison to the campaigns I have administered and ran, that were for organ transplants and were in the six figure range.
    My goal was roughly 13k, and I saw it as being a mere few weeks of waiting before I could get my surgery. I was right. It was hard on me, such as it was like the Doctor being the patient…but I did give assistance, advice and direction even on my worst of days, because I knew it was my only hope.
    Although I had a local Dr. who “could” have performed the surgery, he was ignorant to the point that he actually thought surgery was only required when one’s numbers were through the roof. Damn symptomatic forms of this disease….He, like a lot of insurers believe that more and more should apply, for patients to be eligible. That is non-sense and if you will go to Dr. Norman’s website http://www.parathyroid.com you will see and learn more than any Doctor is granted in medical school, which after this long journey, and numerous visits to GP’s, internists, and ER’s…I have learned it may be one of the most UN-STUDIED (but increasingly fast growing) medical conditions around!
    So, what to do if you have symptoms before? I would suggest the website mentioned….questions afterward are not quite so “clear cut”, and that pains me also….I feel too little discharge info is given, and each individual, as we know, having gotten the disease in the first place, WITHDRAWS and REGAINS their vitality and health, all on very very different levels, which seems to be overlooked by the actual surgeons (no matter how good). I mean, how can they expect you to go BACK to the Dr. who didn’t even understand the disease in the first place, to treat your body’s struggle back to normal calcium levels, etc…? I believe there are two areas that need MUCh work in the practice of the illness caused by, operated on, and symptoms left by…the ACTUAL SURGERY. Those two areas are education about symptom management and care (before and AFTER…neither the least important)…and financially insuring that every patient that suffers from this disease is helped secure the treatment/surgery they so desperately need.
    Being as I am so close behind my actual surgery, I myself are questioning symptoms that I am experiencing after surgery. I long for a ….well even a small pamphlet, if you will..on what to expect, what to see as dangerous, and how long is too long to still be feeling ill, afterwards…!
    By expertise, I endorse Dr. Norman’s practice, but I do feel that this illness is one of the most complicated for people who acquire it to understand. If general physicians have a hard time themselves knowing what to do, how to treat pre and post symptoms, and also misdiagnose or overlook a very large number of cases each year, one would summarize that in the end, this requires a foundation that will help address all the problems that the already confused patients (before and after) faces.
    If I can offer any advice to anyone about how to set up a fund-raiser, please feel free to write me. I cannot personally consult on each one, but I do have an outline that I will give, and in the end, I see no reason that there should be ANYONE in America (or elsewhere) that goes without a cure. I also do not think that any patient, having HAD the surgery should not have very close guidance and THAT guidance be part of their care, from their surgeons. Most all other surgical conditions are followed up by the Physician who performs it, why should this one be any different?

  8. I had parathyroid surgery last week. I am having the tingling in my lips and fingers, so thought I would look it up. The booklet the doctor gave me said to call the doctor if this symptom should happen. The doctor says to go to the ER. From what I see here – I need to go find my Tums. I will try that first.

    • Hi Mary… It is scary for sure, but the trip to the ER was costly and unnecessary… I wish the docs would tell you that it’s kinda normal for this to happen and NOT to panic but just up your calcium…. it takes your body time to adjust to all the changes for sure.. The other thing I would add is to get a better calcium supplement than TUMS… That has a very cheap source of calcium in it and is incomplete since it doesn’t have any magnesium or Vitamin D. Have you hubby go to the drug store and the pharmacist will usually point him to something worthwhile.

  9. I have been evading this surgery for years, as I am not comfortable with the info that is out there, especially care after surgery. Apparently I cannot have the modern surgery, because they cannot locate the effected adenoma, and have to have the old slit sytem.

    Is there any other cure, or is surgery the only method. I live in Canada, we have the health protection by the government, but I think it is fear that puts me off from the surgery, though my surgeon suggest I should do it. I do not have any severe systems associated with this, besides my calcium level being high, and maybe foggy and depressed state.

    angela

    • Angela, tell us more about the health care system in Canada… I’m in the terrified about the Obama insurance plan here in the US…. But as for the surgery, mine really went off without a hitch.. I had a calcium dip afterwards that if my doctors would have warned me about and just told me to take some additional calcium afterwards wouldn’t have even scared me. My guess is that even though you don’t think you have symptoms that after you have the surgery you’ll see all of the things that were affected that you didn’t even know about. I’m so happy I had mine and now almost exactly a year later you can barely see the scar… I really will post a photo of that soon. :) good luck and please post and let us know how it goes.

  10. First i want to say God Bless to you all. I had surgey done 3/9/10.
    my PTH was 265/now that is very high. my calcium was high 11.3 ….
    now i still feel very ill ,,,my hands are always numb,, it keeps me up at nite,i cant drive no more, i cant sit for long time..i drop dishes cups,, i pray every night that i get better,, i just dont understand i get the SURGEY… so i can get better,,now im feel wrost then i ever did. i cnt work no more, the doctor tells me it takes time to get better,,well the surgey was only to take 20mins,,yea right i was in surgey over 2hours,, im sorry if im scaring any of you..but thats wht is going on with me. i just dont knw anymore..
    i will when i came home the next day from hospital,,i was so weak, i could not walk with out my son holding me up. i have never felt anything like that in my whole life. So please be very carefull when you get this ,,,surgey okay. i ahve 12 grandchildren..and i wnt my life back ..they are my WORLD..school will be out soon,,and i cnt even do things with them now.im to ill.. i knw i must sound like abasket case,,but i was avery strong women,, up at 5am everyday and off to work. now i cant even get out of bed. Well i hope none of you women or men ever have to feel wht im now.. Take care evryone GOD BLESS.you all. AND good LUCK.yr in my PRAYERS.. thank you Peggy.

  11. peggy, where did you have your surgery? thank you, ginger cribbs

  12. I love visiting your blog. My surgery is on Tuesday. My husband and I lost our jobs and we only have the county insurance(Medi-cal) and will be using the county hospital which is also a teaching hospital. My surgeon together with her senior resident will be performing the surgery. I have sleep apnea and post nasal drip (very narrow airway). Did not meet my anesthesiologist. Was told I will meet him/her before surgery. I am really scared about the whole thing. Does anybody know Dr. Mary Lauren LaLakea? Are there complications with sleep apnea in surgery? I am seriously thinking of canceling this surgery…but do not want to live with high blood calcium. I feel like I don’t have any other option because of my insurance. I would appreciate any help. Thank you for letting me post.God bless.

    • Good morning Eli,

      I know they always ask if you have sleep apnea when you have surgery so I assume they must do something special for that. For me at least it was amazing how much better I felt almost immediately after surgery and now a year and a half later you can barely see the scar. Good luck to you and come back and tell us how it goes.

    • How are you doing?

  13. Chrissy, I finally had my surgery at UCSF. on April 5. Decided to go there instead of the county hospital. I met a lady from a Parathyroid group and she referred me to this Dr. Surgery went pretty well and they removed the adenoma. Before surgery my Calcium was 12 and PTH 184. After the surgery Calcium was 9.1 and PTH 30. I visited my surgeon for post-op follow up and she ordered labs and that was 2 weeks ago. 2 days later she called me saying my calcium was high again 10. but my PTH was 13. She wants labs done again in 2 weeks. I am having horrible symptoms and feel worse than before surgery. I feel weak all the time, dizzy and feel like i am going to pass out. BP is high again also. my body feels jittery all the time, hot flashes and headaches. Life doesn’t feel the same anymore. I never had the tingly feeling but had bad leg cramps. Dr. said not to take calcium supplements because of my blood calcium being high again. I am very discouraged and worried. I pray that the Lord will perform a miracle in my life and cure me. Please, pray for me. If you have any advice on way I am feeling like this, please help me out. God bless. Eli

    • Chrissy says:

      Hey Eli, Just wondering how you are doing now? I continue to be symptom free after my surgery and over a year of the increased calcium and Vitamin D. I’m finally at all the right levels and just taking calcium and Vitamin D to maintain “normal”. I hope you are doing better now.

  14. Kitty Mathieson says:

    Dr. Lalakea is a brilliant surgeon and impressive ENT physician. She received her B.A. in Biochemistry, cum laude, from Harvard University. She received her M.D. from Boston University with summa cum laude honors and then Dr. Lalakea went on to complete her Otolaryngology/Head & Neck Surgery Residency at Stanford University in 1990, and received her Board Certification from the American Board of Otolaryngology that same year.

    She joined the clinical faculty at Stanford in 1990, and accepted her current position of Asst. Chief of Otolaryngology/Head & Neck Surgery at Santa Clara Valley Medical Center in San Jose, which is not ONLY a “county hospital” as you mentioned, but also a Stanford Medical School “teaching” hospital.

    Dr. Lalakea is a Fellow of the American Academy of Otolaryngology/Head & Neck Surgery, the American Society of Head and Neck Surgery, and the American College of Surgeons. She has twice been recognized by the Stanford Otolaryngology/Head & Neck Surgery program as a recipient of the Teacher of the Year Award, and continues to participate actively in the teaching program.

    A hospital defined as a “county” hospital can be surprisingly well-equipped to serve all patients, not just indigent or low income individuals. In fact, one may find a higher grade of care in this setting as teaching hospitals are meant to illuminate and educate the next generation, so doctors and residents are on their proverbial “toes,” paying close attention to the “P’s and Q’s” of the symptoms and needs of the patient.

    Please excuse me, but a highly-trained physician and the ability to articulate your current symptoms is what you need more than a “Lord” performing a miracle. Not that I don’t believe in miracles, but you should not be concerned with seeing Dr. Lalakea. In fact, she most likely was your answer to pray because she ROCKS as a doctor. Her kind bedside manner, sterling education and professional demeanor place her in the status of “kick-ass doc” in my book and I’m most apprehensive when it comes to Valley Medical Center, but all my concerns were alleviated.

    Valley Medical is one of the best hospitals in the area and I for one am thankful that it accepts patients such as me who have no current employment or any form of income. It’s a good hospital and she’s an excellent doctor. If you have need for further medical counsel and VMC is closer than any other hospital, go if not RUN to Dr. Lalakea.

    By the way, one week ago she performed a complete thyroidectomy on me and the only symptom I am currently experiencing is a vertigo which I think can be attributed to the Levothyroxine. Who knows at this point, but I would suggest you be persistent about follow-up and don’t hesitate to ask for Dr. Lalakea as your physician.

    I hope if you need a miracle it will materialize. In the meantime, relax – take your meds as prescribed and remember to have a voice to speak what’s on your mind during your doctor visits. Write everything down on a piece of paper at home and be persistent when it comes to expressing that you are having difficulties which you think need to be addressed. Don’t feel intimidated about explaining your fears and symptoms to any physician when it comes to your health.

    Best of luck,

    [email protected]

  15. Chrissy, I am so shocked that your surgeon would fail to recognize what appears to be obvious hypocalcemic tetany symptoms after your PTx, when you very definitely should have been given calcium. I’ve posted the link above, to a site we founded. Many people post sharing their stories, but equally important, offer help to each other. I will pray for you that your symptoms have started to subside. For me, it was quite a long time after my PTx in Tampa that I discovered I was not properly absorbing the Ca Citrate that is usually appropriate for “most” patients. Luckily, thanks to people posting of similar experiences, even a world reknown facility like Tampa now pays closer attention to patients once they return home. Parathyroidectomies can also immediately cause many transient “thyroid” probs w/varying #’s for quite a while after PTx’s.
    Hope you have found more of your answers and take care.

  16. Vicki Wright says:

    I am facing parathyroid surgery on Sept 9th and am concerned after hearing a few stories of those who did NOT feel better follwoing surgery. I’ve had a high calcium level for over 22 years and was finally diagnosed this past March. It seems forever to finally get surgery. I don’t know how I’d face NOT feeling any better.

  17. This is a great post and discussion. I was wondering if anyone here could help me out a little bit?

    During a recent hospital visit for a particularly bad kidney stone, blood work was done, and they found high calcium and high pth. A Dr of internal medicine spoke to me, and suggested that many disparate problems I was having (kidney stones, high blood pressure, frequent headaches, fatigue, general frequent feeling of “lousy”)) could be due to a parathyroid tumor.

    When I got it home, and check it out, I was actually EXCITED! It felt, finally, there is a single, simple reason for why I feel so lousy so frequently. And, there is a simple cure.

    My general care physician, did not get on board at all. He ran his own blood tests, which came out normal. He suggested the hospital’s tests were a mistake. Also, as I spoke with him, I realized he didn’t even know about the minimally invasive procedure.

    So…my two questions: 1. Anyone out there ever have blood tests that flucuate between a clear diagnosis (high calcium, high pth) and normal (normal-high calcium, dead center pth)? Anyone have further thoughts on this, or experience with it?

    2. I am the pastor of a small church, with no health insurance. I’ll be paying for surgery (if the diagnosis holds up) out of pocket. Any idea how much the total cost is? generally speaking? Are we talking $5K-10K; $10K-15K or even more?

    Thanks so much!

    • My GP found the issue and then sent me to an Endochrionologists… but the first 4 times I went to the GP’s I got various things usually.. Oh.. it’s menopause, it’s stress, etc..

  18. Jan Hamilton says:

    I recently had parathyroid surgery in Seattle with Dr. Kathleen STickney. She is an expert and you take high levels of calcium after the operation as well as vit D and you go on with your life just fine!

  19. @ Tom….I don’t know if you have the answers to your questions yet or not but I just read your post and thought I would give you the info that I have. …First of all I have read where it is not uncommon to have your calcium and pth fluctuate. I think it normally does this with parathyroid disease. I would keep having my calcium and pth checked together to see how the numbers come out. I only had one test which showed high calcium and pth at the same time and that’s all it took to get a diagnosis.

    I had parathyroid surgery in Tampa in June of this year. They have a website…parathyroid.com that gives you all kinds of info about the disease and the surgery. You can even view a video of the surgery being done…if you want to do that :) There is a section to view on the site that says become a patient. It gives the TOTAL cost which includes the consultation fee as $11,250.00 for EVERYTHING… for those who do not have insurance. They take patients from all over the world.

    I went to Tampa because I feel they are the most experienced surgeons that I could find nearest to me. I had a very positive experience there and highly recommend them. But I know that there are other doctors also very capable..I just don’t know where to tell you to find them. Just make sure that whoever does your surgery is very experienced and does the mini parathyroid surgery. But I do suggest that you go to that website and read it if you haven’t already. Very interesting info to be found there. I hope this has been helpful to you.

    Prayers for you!
    Carol

  20. Had Parathyroid surgery in June 2009. Woke up from surgery with an unbearable pain in the back of my head/neck and I couldn’t breathe. To this day I have these symptoms that were NOT there before the surgery. And my pre-surgery symptoms are still there–cramping has not gone away and my stomache ailments are worse. My osteoperosis has actually reversed and bone density is now normal–the only positive that came out of this. I’ve found that avoiding calcium helps with the breathing difficulty. But the moment I eat a piece of cheese, milk, or ANY calcium, my throat feels big–and I can’t catch my breath. Forget about TUMS–I would completeley stop breathing. Evidently, during surgery, the doctor (actually the student at this learning hospital) dropped the cut-off gland into the tissue and they had to dig it out. The first test (before they could find/retrieve it) was showing high XXX level (not sure–I think it’s the parathyroid hormone they check before stitching you back up). According to the doctor, they were able to find the gland, remove it, and re-testing showed a normal parthyroid hormone level, giving the okay to stitch me back up. I suspect they dropped my head/neck while I was unconscious causing some sort of permanent damage to the back of my neck and that the parathyroid gland is floating around my throat tissue somewhere swelling up when I eat calcium. I know it sounds crazy, but I have no othe explanation! In the follow up, when I expressed concern about neck pain and trouble breathing, the surgeon shoved very forcably a scope down my throat to prove to me it was fine (how the heck do I know what it’s supposed to look like). When I told my GP, she thought I was crazy. My newer doctor, an internist, said it’s possible, but didn’t order any tests…I’m sick and tired of being sick and tired.

  21. I had the the surgery, felt fine when I came out as long as they were pumping calcium into my system. Then I went up to the normal ward and my calcium levels dropped. I woke up on the Saturday morning with a feeling of such dread that I had a massive need to end my life. I wanted to jump out of the hospital window. I have never felt such a feeling of dread and hoplessness.
    I phoned my wife and told her to get to me quickly as I was afraid and as I put down the phone my whole body went into spasms and I became paralysed.
    Not knowing what was going on I believed I was about to die and I started callling on the name of Jesus as I thought my lungs would surely stop working as well. I managed to call to the nurses who took my calls of help with little urgency, but after screaming they quickly got the doctor to come up to me. My wife then had arrived and sh held me in her arms and comforted me. I really belived I was about to die. She was in a state and the doctor then said to me that maybe I should eat something to whci I replied I could not move and needed urgent attention.
    They evetually injected 4 viles of calcium into me and all the way back to the ICU I prayed ‘The Lord is my Shepard’ and called on the name of Jesus to help me.
    It took about two hours before my body normalised and I was calm. I regretted having the op.
    it is now only three weeks post op and I still get feelings of dread and anxiety. Can any one help me with advice on how to get rid of this feeling. I keep taking calcium but it does not help.
    Think carefully before having the op.
    I am not saying that I won’t get better, but I am praying for help to feel better.
    I sometimes feel that doctors don’t always tell you exactly what you are getting into and once you have had the op they should monitor people closer. Perhaps they are just intersted in the money.

    • This sounds exactly like what happened to me … see the post on how NOT to go to the emergency room… Once your calcium levels are consistent hopefully you’ll feel better. Does your doctor have you taking large doses of Vitamin D as well? I was on a mega dose prescription for several months post surgery and continue to take a large over the counter dose daily.

  22. susan smiler says:

    go to tampa florida and the norman parathyroid center even if you have to beg borrow or steal the money to do it- your life is worth it!

  23. Andrew and others…I went to the Norman Parathyroid Center. I had one adenoma removed on 11/14/2011 and one parathyroid ‘abnormality’ removed – so a total of two parathyroid glands removed. The next evening, I had the weirdest feeling…I buzzed all over, my teeth, my body….everything. I called my surgeon and he said take more calcium..take 5,10, 100, 1000, 1,000.000. I am serious. I cried…but I took more calcium. My anxiety level was out of the spectrum. I have had my calcium and PTH checked over the last 6 weeks. At the last check up it was PTH 16, and Serum CA 9. I am on 1200 mg elemental ca daily. Some days I tingle, some days I don’t. Caffine bothers me now. My Women’s One a Day bothers me – B12 overload, I am ASSUMING. I stopped the vitamin and the tingling got better. I stopped the caffine, and the tingling got better. BUT, I am sitting here tonight and tingling. My shoes bother me now – I tingle even when they are tied loosely. I am looking for feedback from others who may have had a similar experience and have overcome this. I have GREAT days and days that I tingle. I would love to hear what other peoples CA and PTH levels were days, weeks, months after surgery. I have often wondered if I made a life=altering mistake by having this surgery. I do NOT feel 10 years younger or better.

  24. firebird56 says:

    @Tess I do hope this finds you much improved by now. A large number of PTx patients, as well as several waiting for parathyroidectomies, share a great deal of their lab #’s, symptoms, & post-op recovery experiences at a FB page. Also on this page can be found a list of highly experienced surgeons, listed by
    state/city. It has been compiled over the last two years based on poster’s own recommendations/personal experiences with each of these surgeons.

    Please feel free to go to the link, click “like” and begin posting with many who post daily. If links are still disallowed & it does not appear below, you may email this address to receive information on the link. [email protected]

  25. Jay Barrett says:

    I had kidney stones (the worse pain), Calcium level of 10.6 and PTH of 140. Had the tests taken 3 more times (over 4 weeks) with 3 other specialist (including the surgeon) and all showed roughly the same numbers. The Dexa Scan for bone density confirmed that I had osteopena. Underwent the surgery in NJ after carefully researching the best doctor who specializes in this. Decided I did not want to use Dr Norman. The operation that was targeted to be 1 hour, took over 5 hours because the 4th parathyroid (the one with the adenoma) was not in my neck and was finally located in my chest cavity. (Surgeon had to cancel 3 scheduled surgeries as a result of being in the operation room for 5 hours with me). The size of that adenoma on the 4th parathyroid was about the size of a grape—enormous, and the largest he has ever seen. I have one functional parathyroid today–that is doing the job. Now two years later, my calcium reading are normal (ranging around 8.6 ot 9.1). The minor tingling in fingers, toes, weekly easily controlled by Vit D & Ca

  26. I had my surgery 3/22/12. Three weeks + i am still having sever tingling,numbness throughout my body. I can not wear shoes as they bother the bottom of my feet. I awake in the morninings and feel there is nothing important enough to get up for or live for. I live daily with brain fog,confusion,sedated feeling like im wearing a mask giving me nitrous oxide. I can not even have a normal low educated conversation because i cant produce easy words. I have been in the ER twice the same day less then 24 hours after surgery because of the symptoms. I was sent home becuase the doctors and or nurses had not clue why or how these feeling are occuring. The doctor at the second hospital Sacred heart in spokane wash., she said that im having parasethia and continue to take calcium and vit. D. I visited the ER 4/13/12 where they gave me Two IV infusions of calcium. After the first one my calcium became normal after being around 8.2 and 9.6 after. they gave me a second one and sent me home. I felt about 75 percent better as far as the tingling and numbing was concerned. about 24 hrs later im sitting here feeling the worse since the surgery. after the calcium and really during the calcium i felt like i had a lump in my throat making swallowing little uncomfortable. I have been having mid to upper back strain and headaches that dont respond to toradol or any IV pain meds. I can say to everyone that The medicine TORADOL helps covering the symptoms of tingling and numbing as well as most pain. Please becareful becuase TORADOL can be harmful to the kidneys. The worse of the tingling is around my eyes and my head feels like i have a sphere of buzzing around it. My tongue is numb teeth hurt/numb lips numb and when i eat i constantly bite my cheeks,tongue,lips. I really havent been interested in eating because my tatses are very altered, a hamburger as just as much tatse as a piece of toast with butter. I have osteopenia at the age of 39 which is about to within two to three years will become osteoperosis. I actually have osteoperosis in both arms and fortunatlymy hips are still dense enuff to stay out of the range of osteopenia which if you dont know what osteoponiea is, it is the stage prior to osteoperosis. The DR’s think that i have been having high calcium levels for over ten years. Which ten years is along time to for the body to get use to functioning on the high levels. The body now has to get use to functioning on normal levels of calcium and just like drug users the body will have to now go through withdrawls until it gets use to the normal levels of calcium as if the body has to function without drugs. The body will go through a time dealing with what is called hungry bone syndrome where the bones of the body will absorbe as much calcium as it can to replace the calcium that was taken over a period of time when the PTH (Parathyroid hormone) is above normal stripping the calcium from the bones. The calcium supplements have to be high in dosage so that there is not only enough for the bones to restore the calcuim but to keep the nervouse system charged with the proper calcium level. The bones will keep sucking in the calcium until happy and then hopefuly the body will become happy is the hopeful theory i have and i hope that my theory is correct. Btw osteoperosis is not reverseable it is simply controlled or can be controlled by meds to stop further density depletion and if you have only osteopenia you can by meds control any further depletion of density which would turn into osteoperosis. Rememer everyone that as gone through the surgery and those who are deciding to nhave surgery, that when calcium levels and PTH are at high levels the only diagnosis surgery. Surgery is the only way to reduce and or have the levels of calcium and the pth back to normal.keeping calcium levels high can cause stroke and heart issues. My DR. gave me 50,000 iu’s of vitamin D to reverse the high calcium levels which could have been a death sentence but only produces kidney stones. The kidney stones gave be the sign of death with the pain and discomfort . the pain was so volitule that IV pain and nausea meds barely touched the pain until i was given enough IV pain meds that drifted off to sleep. The only thing from my experience of the surgery would be this, please i mean please choose to have the surgery BUT I MEAN BUT choose and make sure the surgeon is a endocronologist surgeon and that he has you have a nuclear procedure through nuclear medicine called a sestamibi scan to make sure and to locate the parathyroid'(S) causing the issues. Dont have the surgery if they dont use this nuclear scan.

  27. i had my parathyroidectomy on June 22nd, 2012. I’m taking Oscal 500 w/vit D as prescribed by the surgeon. suddenly, 12 days post-op, on july 4th, my entire left side went numb & weak. went to ER, they did a CT scan which ruled out a stroke, did bloodwork (they said my calcium level was fine) & after about 4-5 hrs the numbness & weakness subsided, but ony slightly. Prior to them discharging me, the ER dr said I had ‘paraesthesia’ & to see my primary care dr, which I have an appt w/tomorrow. The day after I went to ER, I called my surgeon to let her know about the numbness/weakness, she did not feel it was anything to do w/the surgery. Meanwhile, I’m suffering still with the numbness & weakness, & now I have like a buzzing/tingling, again, only on my left side from head to toe. Also, no energy, but maybe that’s due to still being only about 3 wks out from surgery. After reading these posts, I’m pretty convinced this ‘paraesthesia’ has something to do w/my calcium, such as an absorption problem perhaps. Any ideas, anyone?

    • Chrissy says:

      Are you taking a large dose of vitamin D? My doc prescribed a large dose I took once a week don’t remember the number now but it was LARGE! 3 years post surgery he still has me taking a Calcium supplement PLUS an additional vitamin D.. The amount that’s in the Oscal probably isn’t that large.. He also recommended sitting in the sun 15-20 minutes per day..(or as often as you can) natural D plus just being outside in the fresh air can elevate your mood. Sun screen on the face.. but let your arms/legs absorb some of that vitamin D… Of course not if you have skin issues.. but I have absolutely no bad symptoms any more. He always checks my calcium levels and vit D.

  28. Ardith Legalley says:

    When i get some bad muscle cramps, i would just take some OTC pain killers and food supplements that helps and healing the joints and muscles. ;:”,;

    Warmest wishes http://healthmedicinelab.com/stress-rash/

  29. To Chrissy (In June, 2011)

    I had a no-problem PTx surgery today at the Norman Center in Tampa and, upon discharge, was prescribed a highly-structured multi-month Calcium/Vitamin D (Citri-cal) regimen. We’re you given a similar regimen when you had your surgery in September 2011? Are you having any post-op problems?

    • I was told to take a double dose of Calcium and was on a prescription 1x a week high quantity of Vitamin D. My doctor says anyone over 45 should be taking a vitamin D supplement on a daily basis.. It helps with many aging and health problems.

      • I had parathyroid surgery one week ago. I’m having the tingling in my face, hands, arms and feet. After speaking with my doctor, I was told to increase my intake of calcium. So, I have and now I’m having difficulty breathing as if my throat is closing up or not enough air is passing through. Is this normal?

  30. Susan Kanen says:

    Can you send me Dr. Normans Calcium/Vit D regimen for post surgery of parathyroid? I am scheduled for the surgery tomorrow.

  31. Hello Everyone,

    I live in Dallas Texas and had parathyroidectomy performed Wed. Feb. 6th at Norman Parathyroid Center in Tampa, Florida. Although my insurance was not an issue, if you are paying for this procedure, I would estimate $15,000 total for the consultation, procedure (surgeon, hospital & anesthesia fees), airfare, hotel for three nights, taxi and food.

    I highly recommend the Norman Parathyroid Center and don’t feel you need Dr. Norman to perform your procedure. My surgeons were Dr. Lopez & Toro, with Dr. Toro as primary and the youngest member of the group. Below, I will tell you both pros and cons of my experience.

    My husband and I stayed at the Hampton Inn in YBor (pronounced E Bar) City, which is only 4 miles from Tampa International. The Hampton has a shuttle service to/from the hospital and anywhere else within 3 miles of the facility; however, if you are scheduled to arrive at the hospital at 8 AM or earlier, you will need to take a taxi (hotel is well-accustomed to Norman patients and will take care of you – they ordered the taxi for me & had it waiting for me at 7 AM). The hotel shuttle picked us up later that afternoon for our return from the hospital.

    Tampa General, location of the Norman Parathyroid Center, is a beautiful, updated facility on Davis Island in downtown Tampa. Your surgery buddy (parent, spouse, friend, partner, etc) will have a lovely view of Tampa Bay from the waiting room and possibly your own room (some rooms have the view, some don’t). Check in to the hospital is as easy as going to the Parathyroid Center (no visit to the admissions department). You will be promptly put into a bed in a lovely hospital gown, staff introduced to you, vitals taken, IV placed into your hand and eventually will be on your way to the Nuclear Medicine center for you Sestamibi scan. This procedure begins with an injection of nuclear medicine dye into your IV which may feel cool or even sting a bit (none of which I felt) and then the procedure begins. You will be asked to lay very still for four 5 minute increments while photos are taken from different angles of your parathyroid gland area (neck, shoulders, upper chest). You can breath and swallow during the 5 min. increments, but you must be still – no movement allowed. Afterwards, you will be promptly taken back to your bed in the Parathyroid Center. While waiting for your turn at surgery, both doctors will visit with you, as well as the anesthesiologist and his nurse anesthetist assistant and the nurses. The wait is the worse part….. I arrived at 8 AM and surgery was approximately 12 noon. But, the rooms are very calming, quiet, with a television showing zen-like photos of outdoor nature scenes. And, hopefully you will have one of the rooms with a beautiful view of the bay. I did not :(

    Finally, on my way to surgery…… the room is very cool which was great for me and a mask is placed on your face and you are asked to breathe deeply. It took me about 5 deep breaths before I fell asleep, but I was out – don’t remember a thing! Surgery was successful. One small (in comparison to some) tumor was removed and the other three glands were clean. My tumor was making 4x the normal PTH when checked at removal. (Note: On all my tests prior to surgery – for 2 and 1/2 years – never was my PTH been shown to be elevated on lab values. My elevated calciums of up to 10.7 and my own background in healthcare were what led me to pursue removal of my tumor. My endo (who is one of the best in the world for treatment for Cushings & Pituitary dysfunction – which I also have – wanted me to play the “wait & see” game regarding my parathyroid tumor) so I pursued this “cure” on my own…. and so glad I did.

    Left the hospital around 2:30 PM and Hampton shuttle gave us a lift back to our hotel.

    PROS & CONS (and what I would and would not do after this experience…..)

    PROS:
    1) Do what you have to to afford the Norman Parathyroid Center. Approximate total cost I would estimate at $15,000. (Much more affordable than the $30K my husband was charged to remove his appendix by a local hospital!) Also, my scar is literally one inch in the area you would normally see a tracheotomy performed and I was allowed to run soapy water over the area the next day & pat dry and all days after until one week when I will remove the very small bandage.

    2) Do Not play the “wait & see” game. Endocrinologists & your PCP (for sure) are NOT experts in parathyroid disease. It is normal for you to have low and high calciums during the “watch” period. It is NORMAL to never have a high PTH and still have a tumor.

    3) Stay NEAR the hospital – as traveling after surgery is somewhat painful and you don’t want any more anxiety than you already have prior to surgery worrying about getting to the hospital on time.

    CONS:

    1) Healthcare today is ridiculous…. we have gone from stays that were way too long – much more than the patient ever needed – to way to short – being allowed to leave the hospital too soon after surgery. Even though they “brag” about you being discharged from the hospital within two hours of parathyroid surgery, that is not necessarily a good thing. I was in extreme pain when I woke up from the procedure, but was not given Morphine or any kind of narcotic that would have eased my pain because I would not have been allowed to leave the hospital two hours post-surgery. I remember crying like a baby at first when a nurse told me “don’t cry, it will only make the spasm and pain worse.” How can you not cry when it hurts like Hell??? This is not good medical practice. We have the right to pain killers. In fact, you are not given any pain killers on discharge – you are told to take ibuprofen. Well, good thing for me, I have so many other illnesses, I have a great supply of Tylenol #3 with codeine, Vicodin, Klonopin, etc on hand that I was able to control my pain once I was back at my hotel room. You definitely NEED to take IBUPROFEN for the swelling, but you may need something more initially for the pain. So, speak with your PCP and get a script to take with you – if you don’t already have these handy.

    What I would and would not do after this experience……..

    1. Would use Norman Parathyroid Center, especially Drs. Lopez & Toro, who are very nice and spend time with you answering any questions and have, in general, a very good bedside manner. And, Dr. Toro is very nice on the phone following up with you. Also, this group have a very precise schedule of Calcium supplement worked out for you post-surgery (with one week supply provided) to eliminate low calcium crashes (I have had mild tingling in hands/feet ONLY, which is immediately relieved taking an extra calcium tablet).

    2. Do not take TUMS. Take (over-the-counter) Citracal MAXIMUM (calcium citrate + D3) – which is recommended by Norman Parathyroid Center – and is the only one that is properly absorbed by the intestine with and without food; it does not require food or stomach acid for absorption, and is easy on the digestive system (I never know I have taken it – no upset stomach). Post-surgery, I am to take 5 calcium tablets spread out during the day (breakfast, lunch, dinner and 2 at night) for one week; then 4 spread out during the day for one week; then two per day the rest of my life. NOTE: Extra calcium does cause constipation so take Citrucel powder (I take 2 scoops in 8 oz water daily) – best tasting & recommended by the gastro MDs. Tastes like TANG (yummie) for those of us old enough to remember…… or who still have memory left post parathyroid disease :)

    3. Would NOT fly home the next day. We stayed in Tampa for 5 days and went to the beach the last two days (not sure that was a good idea as I have had extreme limb & face swelling from walking – gaining 10 lbs of fluid) but none the less, I know I would not have felt well enough to fly the next day. The day after would have been fine, as long as you rested at the hotel, took your meds, kept your head/feet up, and had ice pack on your neck.

    4. Ladies, bring lots of pretty scarves with you to hide your lovely scar. At first I thought I would look odd – as it was pretty warm in Tampa even in February, but noticed lots of women wore them just to be fashionable :) Felt good to dress up a bit, especially since you really felt like sh______ :)

    5. Expect edema….. Surgery is hard on your body – period. I gained 10 lbs. of fluid and could not wear my rings and noticed my ankles looked like I was 9 months pregnant! Bring comfy shoes only – slip on and off easily – and bring ones that are a bit more roomy than usual. Don’t overpack – you won’t need near as much clothes, shoes, jewelry as you think…… girls just can’t seem to get this through their heads :) DO bring a jacket or sweater – as it gets much cooler at night, just in case you feel like a dinner out. And, bring socks just for comfort – you can wear them during surgery.

    6. DO NOT expect this to be the miracle cure you have read about……. Even though some things I have been instantly better for me – such as my bone pain is GONE (yes, no longer feel like I’m “bone tired” as I kept telling my docs over & over & over again….). However, I still feel fatigued and need lots of rest (maybe this will improve, maybe not – the jury is out with many others who have been thru this and I have so many other health issues I may never see improvement). But, other instant improvements….. NAUSEA is GONE! Before surgery, I could barely eat. The thought of food made me nauseous. Appetite is back! (not sure that’s a good thing….) :) Foggy head syndrome is GONE! However, I still notice I’m having the “memory” problems – but that is more like due to my pituitary damage than anything to do with parathyroid. But, it is nice to not feel so foggy headed any more. Yeah! Anxiety is not gone, and probably never will be, but I have noticed it is not as bad and what I notice most is I don’t feel bitchy any more! Who knows how may other things may improve over time…. it’s only been 6 days since surgery!

  32. Thanks, DeeJayGee for sharing your story. I too am from Dallas and will be traveling to Tampa for my surgery. Your story helps alleviate many concerns.

  33. Calcium is the most abundant mineral in the body and is necessary for proper muscle contraction, blood vessel health, hormone and enzyme production and the transmission of nervous system impulses, according to the Office of Dietary Supplements. Supplements of calcium are usually in the forms of calcium carbonate and calcium citrate — the calcium salt of citric acid. Though both are well-absorbed, calcium citrate can be taken at any time, with or without food, whereas calcium carbonate needs the production of stomach acid and food intake for absorption.

  34. Hello,

    I am so glad I found this website with the pros and cons and other issues listed. I had the surgery about 10 years ago. My doctor had been telling me my calcium level was high for several years, but I didn’t pay much attention as she didn’t stress the seriousness of high calcium levels. Mine was 11.5. Long story short, I finally did have the surgery. My greatest symtom was constant thirst. I was living in North Palm Beach, Florida at the time. I had to have a large glass of ice water with me at all times. I drank all day long. the only other symtom I recall is poor concentration and memory isssues. I didn’t associate them to the calcium issue until much much later.

    After the surgery, I was told to pop some calcium, not told how much. This was all very casual, until one night I had a severe leg cramp and almost called 911. I managed to find some TUMS, i had run out.

    I just came from my PCP and brought up to her agin how every once in a while I get these leg cramps and have to get some calcium into me as soon as possible. I take Centrum for women over 50 and 1 calcium tablet in the morning and at night I take 2 calcium tablets, but every once in a while a pop an extra tablet or chew some TUMS to try to avoid the cramps.

    i told my PCP today that I want to know exactly how much calcium to take as it is harmful to have too much (When I finish writing this I am going to google and artilce that I just heard about with regards to the dangers of too much calcium in women). My Leg cramp is so severe, I have to call for a family member to help me. I put ice on the inner upper thigh usually the left leg, hold on to my son-in-law who is big and strong and he holds me up and walks with me until the calcium kicks in and the pain subsides. At the first twinge of a cramp, usually at night, I bolt out of bed, pop TUMS and grab the ice. If it is too severe, I become somewhat faint, have the sensation that I will lose my bowels and bladder. (Thank God that has not happened) It is the worst experience I have ever had. If I didn’t know God, and that He loves and cares for me, I almost want to die. It is just that bad. This has never happened during the day, only at night, but I have seriously considered getting a medical bracelet. That makes even more sense now after reading some of your experiences and how emergency and other doctors don’t know what to do about this problem.

    Thanks for listening

    ..

    • I think you might want to try something with better absorption of calcium than the Tums.. that’s what I was told anyway.. to stop the TUMS~ :) I get my combo calcium and vitamin D at Costco for a pretty decent price… Sounds like you need to find a different PCP or see if he/she will refer you to an internist type of doc that specializes in this stuff..

  35. just found out I will be needing parathyroid surg- live in tampa, FL and 37 have had kidney sotnes, mod- high B/P levels- contiplated suicide many time.., was referred to Dr.Norman by my urologist.., after reading DeeJay Gee story- I am deadly afraid to have this surgury
    I have Blue Cross ins- and will be paying some of the costs of the surg.., luckly I just barely make the “30 mile radius” so I only pay $150 for the fee- My calcium level in feb/march 2013- was 11.4 and PTH was 93- should I wait till pth gets higher? also, am a veteran and work at the Dept of V.A- not sure if V.A has parathyroid surgeons?

    • I’m sure everyone is different but I felt 110% better almost immediately after my surgery! I wish they hadn’t misdiagnosed me for over a year!

  36. Do NOT have the VA do this operation. Go to a parathryoid surgeon..AKA endocrine surgeon, such as Dr. Norman or Dr. James Lee at Columbia Presbyterian in NYC. Good luck and you will feel better.

  37. Please Note:

    There is now a connection between thyroid…parathryoid disorders and wheat consumption, wheat intolerance…celiac disease. Please research this on your own. The first thing they performed in NYC prior to my hyperparathryoid surgery was to test me for Celiac for they sometimes go hand in hand.

    • That’s interesting!

    • ChrissyMo says:

      My new internist also said that often times hypothyroid and gluten intolerance is hand and hand but I have had every imaginable test and I don’t have a sensitivity.. However I do feel better when I eat what I call “Gluten Lite”…. aka just avoid most breads especially white bread of course.. eat just one bun or piece of bread on a sandwich or burger and opt for gluten free pasta or whole grain pasta… He also told me GMO modified flour is MUCH high in gluten than back in the day… so paying a bit more for your regular bread from a bakery like Udi’s or one you’ll find in a health food store is likely to contain MUCH less gluten than your average krogers “wheat” bread.

  38. I just had two parathyroid tumors removed at Norman Parathyroid Center at Tampa General Hospital. It is day 4 and I have had the hand cramps, tingling slightly in my fingertips and leg and foots spasms and cramps. This has happened off and on since the day after surgery and, just as the very detailed information I was given when discharged told me to do, I took two Citracals immediately. Also, the night of my surgery, I was called by my surgeon who checked in on me and told me that since I had a fairly large (read this, older) tumor (normal output for an undiseased parathyroid gland is 30-80 units – my larger one’s output was almost 1100 and the smaller one was almost 600!) I was to be on 6 Citracals a day for the first week, racheting down by two less per week till a lifetime daily supplement of two a day. He told me that my PTH was basically nothing when they retested after my surgery, meaning I was ‘cured’ but those two glands that have been in a coma for years need to learn to start doing their jobs.
    In the information I was provided in my departure packet, the four surgeons’ cell phone numbers are listed to call anytime. I say “impressive’.
    Above the comment was made that “I am very afraid” of having this surgery. I would say two things to that – 1) I would agree that you should be if you are NOT in Tampa to go to Norman or in a place very similarly skilled and experienced as TGH. 2) Read what happens to your body and that this WILL kill you if you do not have this/these demons out of your neck. That’s enough for me! The toll it was taking on me for the six or so years that it was undiagnosed was so bad I felt I surely was not going to live to be an old person if things continued to go down this path physically for me. Turns out my intuition was 100% right. Listen to your body. It is screaming at you.
    Yes, this CAN be a fairly easy surgery, although I am not feeling too great despite reports that people go out to eat and to the beach, etc. that night! However, this is a deadly disease and you need to look at it, in my opinion, as definitely not elective. I cannot express how grateful I am to live in Tampa and to have discovered this here.

    • ChrissyMo says:

      So glad they told you to take GOOD Calcium versus Tums.. still amazed that doctors recommend that since it’s really not absorbable. Does your specific Citracal have Magnesium in it? I was told by an internist a couple of weeks ago that it HAS to have that in it.. or have some in your multi that you take with it otherwise it doesn’t get absorbed into the bones where it should be..

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