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have been reading your posts. I have had high calcium since 2002....11.4 then. 10.7 now. Dr. had a wait and see approach since I had no symptoms. Went to ER Jan. 31 this year... had loss of memory and felt "weird". Diagnosed with transient global amnesia, since they could find nothing wrong. Since then had blood work and discovered that now my parathyroid hormone is higher than normal. It was normal two years ago.
But since Jan. 31, I have felt weird! Not myself, tired, sleepy, tingling all over...sometimes my hands feel numb for a while. Nausea, headaches. Loss of appetite at times. And weird dizziness off and on. I feel sometimes like I am dying...it is not normal. I am seeing an endo dr. friday. My internal doc has scheduled a parathyroid sestamibi scan for March 18.
But what is odd is that many of you are now experiencing my symptoms AFTER the operation, not before! I hate this. I just want to feel normal again...but I am afraid the operation may not help (after reading what many of you say.) I thought Tampa Dr. Norman was perhaps the answer...but now I wonder if I should avoid the surgery! Is there a good surgeon in Chicago, if I do have to have the surgery. Help!
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I don't think you will feel worse after surgery if primary hyperparathyroidism is really your problem. There are other things that can cause the calcium to be high. Here is my suggestion - call or email Dr Babak Larian - advancedonc.com, 310-310-0361 and ask your questions. He is in Los Angeles but he is very willing to talk to people and answer questions and make suggestions. You will get straight , honest answers from him.
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I feel for your grandmother. I had my parathyroid removed by D.r Norman and was completely devastated....no sleep, extreme fear and anxiety, no appetite. What helped me was this:

Took magnesium supplements throughout the day (take until causes diahrea, then pull back), fiber with something called LIFEMAX, i had to STOP the calcium (didn't help, I think the citrical made it worse) and B-12 powder sublingual supplement. I felt like I was going crazy. It's taken a long time to feel better, and my stomach still isn't settled. Seems also that wheat/gluten is a problem, so avoid that as best you can. I will pray for your grandmother, please feel free to contact me thru this board.
Terry
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Guest: Glad you are seeing your Dr in a few days. You do not have to have a high PTH to have hyperparathyroidism. It make your diagnosis easier. You certainly need to rule our other possible problems. A negative scan does not mean you do not have HPTH either. High calcium can make you very sick and I can see you are having a tough time. Don't give up. Go prepared with questions to DR. Demand answers. get copies of labs etc. You can not be too informed. There are lots of good surgeons out there. I think MIRP or MIP is a question you should ask if you see a surgeon. Choose your surgeon wisely. This is a long journey for all of us, but I assure you we are glad we had surgery. txg
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I was just recently diagnosed with hypercalcimia, 11.2 PtH is 222, yes 222. My GP tells me it's not hyperparathyroidism because the Sestamibi came back normal. I did question how they did the scan because the total scan took 1 hour to complete. It was my understanding that the scan took multiple hours.
I had my first appointment with an Endocrinologist today and he has ordered all the labs redone to make sure the numbers are correct. I voiced my concern with how the Sestamibi scan was done and he is going to call the Radiologist and find out for me. The Endo has also ordered 24 hour urine, bone density and a thyroid scan. He says my thyroid is enlarged. I have a lot of the symptoms: tired, acid reflux, bone pain, memory loss.
With the calcium elevated and the PtH well over 200 I feel pretty positive it is hyperparathyroidism. I am only 36, how much damage could this have done? If the Endo says he wants to treat with meds, can I request surgery?
I do live in Tampa but Dr. Norman is not on my insurance. I would love to see him. How much did others pay to have Dr. Norman do their surgery? Did insurance cover any of the costs if he was not under your plan?

I appreciate any help, thank you in advance.
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I also had a negative scan. Upon surgery, the parathyroid adenoma was found behind a large thyroid nodule. It would probably never have showed on a scan. If your PTH is that high you must have an enlarged parathyroid. There is no treatment other than surgery.

It is good that your endo is repeating the tests. It is possible that you have both thyroid and parathyroid issues. You might check your insurance to see who they do cover. I bet yours would cover the hospital part of the cost, just not the surgeon.

There are a number of excellent thyroid/parathyroid surgeons. You could do a search of this site to find some that other people have recommended. Mine was Dr Larian who is in Los Angeles. You can check his website at advancedonc.com. He is very helpful and good to answer questions for anyone. He is an excellent surgeon as well, just a long way from you. I know he would help anyway.

I wish you the best. mass
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Guest: Let me start by saying you DO NOT need to have a positive scan to have HPTH. I along with many others had negative scans and still had this disease. It didn't take long for them to do my scan, but mine was done before surgery with Dr Norman. I had good results with Dr Norman and if I lived in that area I would definitely see him. His office staff is the best, could you check with them about out of network. Your symptoms and labs surely indicate HPTH. Dr Norman just did surgery on my brother. He is doing well also. I also had a thyroid nodule removed. No problems. Endo's are not quick to diagnose HPTH. They love to do all the testing. Some unecessary. Get informed on this disease. Do your research. Choose your surgeon wisely and don't take a "wait and see attitude" from any Dr. txg
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Hello everyone, I too am looking for answers about parathyroidism. I have been on a roller coaster ride, that i need to get off. Back in aug. of last year i got a kidney infection, a severe one. was given levaquin which i had a severe reaction too. told er doc that i was allergic to every antibiotic given before. he gave me keflex 500mg 4x aday. needless to say. my life went crazy. While tests were being done they have found i have high calcuim most of the time. like 10.9 10.7 11.0, then i might have a few in the 10.2 range a few times. my pth's were 33 the last one was 42, the ionized calcuim is in the normal high end or 5.7 and 5.8. So this has been on going test for this for months 3 drs. doing them even an endo dr. finally my dr believes it could be para after all this time and a few tests for cancer. i too have emailed dr norman and showed it to my drs. his email. the endo dr even said he had a patient that dr. norman operate on that needed another para removed. like duh theres always a chance another could go whacky. I have been sick for so long that i am coming back from all the drug reactions as i am now allergic or highly sensitive to everything i can not even take tylenol or advil. So i am trying to firgure if i should go have the surgery soon or wait. but my body is in constant turmoil as the levaquin has done nerve damage as well. I have these electric charges in my legs arms its like a vibration tingling, bones hurt off n on numbness, panick attacks from crazyness, i have not had a period in about 5 years and had some hot flashes, the ones i have now are extremely hot flashes that stem from me turning my head or move my back.... zacid reflux also but the keflex also burned up my stomache, constant horse throat as well post nasal drip too. I am at the point of trying to choose where to go for surgery california or florida, I also react to anesthia so worried a bit about that as well and the dye for the scan. maybe they have a test they can do to see, but unlikely as theres not many test for drugs and such. is anyone else out there that is like me that can shed some light. granny you have been awesome on ur story n writing back to other people on this subject. You have probably answered alot of peoples questions and concerns. So thank you a bunch. And how are you doing? I also might have a node or something going on with ny thyroid, but blood work said i was fine. I have had so many tests that said i was fine except for the calcuim and for atheros. and degenerative lumbar spine. Its like i hear a test was negative and so i say hmmmmmmmm the drs and the tests say i am fine but i still feel like c**p. with no real answers. 8 months and counting. hope the ones that had para surgery are feeling better. ty for letting me vent. E.
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Guest of 04/03/09: Gosh I though this was one of my old post! That was my life for years. I am the Queen of allergies! Bless your heart I so know how you are feeling. Now to the issue of hyperparathyroidism: Have you done your research? You must get informed to be your own health care advocate. Knowledge is power! Don't do the wait and see! Your PTH is in the range mine was for years. I never had a high PTH and my brother didn't either. Did the endo think you had HPTH or your pcp? I have found endos rarely give you that diagnosois without a high PTH level. Dr Norman is a great surgeon and there are great surgeons in CA too. Most surgeons won't give you the time of day unless you have been diagnosed. That is why I went to Dr Norman. I was also afraid of the scan (allergies) no problem. It is not like a dye they use for CT scans or IVP's. I never had the scan before going to FL. Dr Norman told me it would be a waste of time and money as it would probably be negative and it was. If you have HPTH you will not get better without surgery. Most people have just one adenoma. Those of us that had more are "rare".
Hope I have been of some help. Stay in touch and do your homework..txg
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E,

You certainly have a lot going on. No wonder you feel so miserable. I'm sorry you have such problems.

I suggest that you talk (not just email) with the surgeons that you are considering, be sure that you feel comfortable with the surgeon and get all your questions answered. It would be good to have your endo talk with the surgeon too. The best situation of all would be to have them work together. Just be sure that you are really comfortable with your decision.

I sure hope that you feel better soon. mass
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Guest: I replied to your post, but not sure what happened to it...lol. I would encourge you to do your homework on HPTH. Get informed. Knowledge is power! I am the Queen of allergies too. No problems with my surgery. The scan is not with a dye like a CT scan or IVP. I think Dr Norman is a great surgeon and he is the only surgeon that gave me the time of day. Lots of good surgeons in CA too. You will probably have to have diagnosis to see one. If you have HPTH, surgery is the way to go. It is rare to have more than one adenoma. HPTH disease will never get better. Remember you do not have to have a high PTH to have this dreaded disease. Do your research. Feel better soon. Saty in touch..txg
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TY texgranny, you are a big help on this disease. I have good n bad days. Mainly bad but some good. I have read all the post in this section. I am concerned about feeling worse after the operation. My bone and muscle pain is not to bad now as i feel the levaquin was the cause of most of it, and the numbness as well. Not to sure tho, as can't get an answer from any of my drs. I do feel my anxiety is from the high calcuim as this has been going on for a couple of years, drs tried a few meds, but again reacted. thats why i hate that now i react to my tylenol and advil. not sure what has happened . Dr. norman i have read is the best, but have read he is curt with people or avoides them when they have problems afterwards. I would go to him if i knew he would be there afterwards like a dr should be. I emailed him once in feb. and got a respose that day. I have emailed him this past monday to help with my making a final choice and my concerns about my reactions to chemicals and of my familys history of cancers, auto immune diseases. my father and sister had brain cancers of different kinds. my brother just got done with non hodgekins b cell lymphoma of the small intestines, my other sister has MS and ovarian cancer . My grandmother had thyroid problems. So i had asked was or is there any test i can do, to help with knowing how i would react to his choice of curing this disease and to help rule out any of these possible causes to my high calcuims, I have not received an email, so i am looking more toward california as i want a dr who will be there when i have problems and concerns. I have gotten to much run around from the drs here, i can't have that any more. my 75 year old mother had to come take care of me n my family at xmas, she could not believe how rued my drs were, she got very upset with my gp dr and told them that it was bs in a nice way of coarse that i was so sick with no answers. I was then given alot of tests of like a mri and a ct and these same blood tests with negative results. I am getting better but very slowly. I have read so much stuff that it has made me over think, but need to get to bottom of this and yes i feel i have para, but also feel something else as well. Thanks for responding so fast texgranny i am the guest.
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My advice to all of you is to talk to the surgeons you are considering. Emails are good but talking provides a different relationship and you are able to respond instantly to each other. Get all your questions answered before you make a commitment. Be sure you are very comfortable with your decision.

The best thing would be for your endo to talk with the surgeon also so they can work together for your best interests. If that won't work, do it yourself.

It's frustrating that so many parathyroid patients have such trouble in getting treatment. With a good surgeon the surgery is easy for the patient - little pain and quick recovery. I wish you all the best. mass
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timberswife 04/04/09: I hate to read you are feeling so bad. I know that frustration. It is easy for me to say stay positive, but I truly know it is a day to day thing for you. Some of your anxiety could be from not knowing. I would encourage you to look at Dr in CA that someone posted on here. I have read Dr Norman didn't do follow up after surgery. I didn't have that problem as my needs were met by contacting his nurse. She always responded to my many questions. All other problems have been addressed by my PCP. I don't see an endo as that has always been a waste of my time and money. I have read many good things about UCLA med center. All symptoms with HPTH don't always go away with surgery. They told me that up front before surgery. I was so sick I took the chance and I am better for an old broad. See a Dr that you are comfortable with as that is half the battle imo....best regards, txg
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i, too, have trouble swallowing, especially pills since my parathyroidectomy 2 weeks ago. It feels like a lump or something stuck in my throat. I've read up on thyroidectomy sites and similar occurrences were noted there. Some said that head will help, stretching, massaging so i'm hopeful it will be relieved. There were also comments stating that they have had it for years--that's scary.
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