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Hello again! timberswife and/or anyone else who may be interested. I posted a huge ? novel ? and, I titled it wrong, so it did not show up here where I had intended it to go. I answered all of your questions about my parathyroidectomy, or, should I say, parathyroidectomies. But, it went to the wrong area. The only thing that I didn't mention was the size of the diseased glands.....#1 and #3 of were 3/4 inch x 1/2 inch x 1/4 inch and #2 was Roughly half the size of #1 and #3. The fourth Gland was partially removed.....but a small fragment was left in place....it did not appear to be diseased like the other ones were. You will find my novel about my experience in the following area....................................

parathyroid effects part 2....my parathyroidectomies

Good Night All......."D"
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If you can not find my "novel" easily any other way, you can also go to search and put in............ was2tired..........................as the author name.

See Ya............"D"
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THANK YOU was2tired and mass, i went to allergist on wesnday begging pretty much to test for chemical sensitivity as i know the surgery is coming up. my allergist had did a time of training many years ago when he first was becoming a dr. he told me some women dr. teacher was really sressing the importance of calcium n the range it needed to be in. he said he believe the constant calcium elevation of calcium has down damage n changed my bodys chemicals n he wants to wait until after surgery to test. if i need a antibiotic in a hurry or other meds. we can do dye free perservative free.... n the safest choices for now. if i need to go to hospital or need anything in an emergency they can call him. so disappointed to say the least but i do understand. now onto today my appointment was with a dr. jason hunt,,,he is with the huntsman cancer place here, hes an ent the specializes in reconstructive surgery n headn neck cancers, n general surgery,,,,he is a new dr. practicing 5 years have heard he is really good many awards already.....went in and asked alot of questions forgot a few but will email them to his nurse. the sad news he doesn't do the mimp he does do a smaller version of the old operation about 1-2 in incision in my neck general anesthia,,,drain tube and definite over night stay , up to 3 days if complications, told reasons why is i have the 4 tumors....oh also 1 n half hour on the operation table. he would take 3 n half of my parathyroid n look at thyroid to see if all the nodules r really ok. this is not what i wanted to hear. hes a great surgeon just wanted a easier course......scared so very scared no guarentee i will not even be sure if i will ever be curedd its about 80 percent, yes but with me i bet it will be not that,,,,,i am the ultimate bad luck......he says generals are really safe which it could be its days later when my body has these massive anxiety panic attacks from know where.....n feeling extremely sick all over like i have the flu. today is my birthday n i feel so much like the rug was pulled out from under me. the surgery is for july 16th but could of had it the end of the month i said wait abit no hurry.....he does do 2=3 of these surgerys aweek...even patients that didn't get cured from dr. norman.so at least he does do them abit like i said excellent dr. just wanted band aid op. n local. just so petrified. well thats the new scoop. thanks again n god speed on healing.....oh will probably take calcium n vit. d forever n constapation for ever n still body will never be the same....can u have severe reactiond to calcium n vit. d....i know it sounds silly . but if u can i'd be one of them. i've tried to be self helping in my care. but when u face drs. who think ur crackers n then when u go what has happened to me now after they lie n say this is safe or very few reactions n find out that there were n u r having them after u read it online u go where or how can i get my self better. i read over 150,000 people die each year from medicine reactions n over doseages. n say such a small percent.......my mind goes small....that is 5 times the size of the town i grew up in.......that really is alot.....medicine really seems more like controled poision.....any ways prayes n get better tired n mass r u doing alot better n did ur para go easy no problems. n granny wherer u getting worried hope u r well. god bless n gods wisdom n making a good n wise choice for me.....i'll probably have it done here as money is getting way tight. i would like to check out mayo in mn family in north dakota. will at least talk with a few places maybe here will be ok.....ok enough self doubt. take care n thanks amillion e.
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My thanks to everyone for the great information you have provided here for those that are still seeking answers. Knowledge is power and even though I have had surgery I am always looking for more info. Timberswife, glad you have a found a surgeon and he will only remove 3 and 1/2 glands. It is unclear to me if he will remove thyroid nodules and biopsy them. I know you have had a needle biopsy, but will they do more? Please stay positive as 80% of getting better is what my surgeon told me and I would still do it in a heartbeat. I TRULY know how hard it is when Drs don't take you seriously, but you have Drs now that want to make you better. Was2tired: Hyperplasia, I don't see many of us on here. I too had this disease for YEARS. Some think 10 yrs, now looking back I truly believe more. Not sure if your case was textbook, but would very much like to know how your diagnosis was made. I still have health "issues" mainly from the bone fractures I have had. The old "depression" creeps up from time to time and I have had that for years too, thanks to HPTH. When I was in my darkest hours no one ever tested my PTH. I am happy the mental health community is taking a good look at this disease. Sorry this is so long, I wish the best for all of you. Take care and stay in touch...txg
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timberswife....and texgranny, So nice to hear from both of you. Timberswife.....what state are you in? Timberswife, I do understand that you are afraid....I hear you loud and clear. How long have all these problems been going on? In regard to your ongoing "anxiety attacks". It is quite likely that the extreme anxiety and/or panic attacks are caused by your Hyperparathyroidism. It is not uncommon for that to happen. If that is the case, you will probably notice a decrease in both the frequency and intensity of these emotionally painful and frightening episodes......and possibly the continuation of a gradual decline in both frequency and intensity over time until the problem no longer exists or becomes so minimized and infrequent, that the "episodes" (if you even have any) may become so minimal by comparison to what you are "feeling" right now......that just might laugh them off as being NOTHING as compared to what "used to be". Either that, or you might be so overwhelmed at the considerable improvement in reduced intensity of Anxiety that you might just be tempted to suddenly drop to your knees "To praise God for the blessings sent your way". Then you would have lots of reason to smile everyday....it can happen!

The surgery brings a new life to so many people. I don't mean to imply that you will walk out of surgery with a 180 degree turn-around the very next day. But, it is quite possible to feel 33% better immediately after surgery with continued and steady improvement after that occuring over quite an extended time period. I can't address improvements beyond 3 months.....because, I am now 3 months post operative....but from what I can see at this time, the little bits of improvement here and there, just keep happening and have not yet stopped happening.....and, I pray that bit by bit, day by day, week by week and month by month, that I will continue to move closer and closer to the wellness that was once mine!
I don't expect miracles.....like, I don't imagine that I will ever be restored to the physically healthy state which I had been in when all of this started in my mid to late thirties.....my bones are damaged by roughly 25 years of Hyperparathyroidism. My knees need to be replaced. My back is damaged by Disc Herniations (about 21 to date, not always different ones, 2 or 3 of them have herniated 2 or 3 times) so bending and twisting while working needs to be minimized and care and caution used. I had a very high instep and my arches broke down so now the bones sometimes rub together and hurt...or pinch a nerve in my foot....so I can't stand for long periods of time. I've lost an inch in height. I very much doubt that any of this will improve......but, without the surgery, all of it would have continued to decline.....as would my bone density....but the surgery prevents the rapid bone loss that I would have suffered otherwise.

Timberswife.....in regard to your questions about Calcium and Vitamin D.
The reason for Vitamin D Supplements......When you have Hyperparathyroidism, your Parathyroid Glands Secrete an excessive amount of Parathyroid Hormone. As the Disease of Hyperparathyroidism progresses over time, larger and larger amounts of Parathyroid Hormone are excreted by the glands....your Parathyroid Hormone Blood Level then becomes higher and higher. This constant exposure to Parathyroid Hormone in progressively greater quantities causes your body's ability to store, process and utilize Vitamin D to become dysfunctional, damaged or destroyed. The longer the Hyperparathyroidism exists before being diagnosed and surgically addressed, the greater the adverse effect on your body's ability to store, process and utilize Vitamin D. With me, my body will no longer store and maintain Vitamin D....so I must take 2000 mg of Vitamin D3 every day. (Food and sun as a source of vitamin D3 will no longer provide enough for my body to function properly.)I feel much better and more wakeful when I take my vitamin D. Vitamin D Levels always need to be checked to be sure your Levels are high enough.

The function of the Parathyroid Glands is to produce Calcium. When they begin to dysfunction from Hyperparathyroidism they go somewhat bezerk and begin producing even more Calcium. That excessive production of Calcium by the Parathyroid Glands is called Hypercalcemia. The high amount of Calcium present in your body causes constipation and a multitude of other things. See my prior post for most of the symptoms. When the Calcium is high before Surgery, sometimes it does not return to normal immediately after Surgery, it may take quite a period of time to normalize. My Calcium continues to be high 3 months post-op....there is some improvement...but, I do not take Calcium Tablets....there is no deficiency of Calcium needing to be corrected by Calcium Tablets. In some patients, often the ones with a lower level of Calcium before surgery, a post-op drop in Calcium Level occurs....this can be life threatening and requires Emergency Room Treatment. Most patients are given Calcium Tablets after surgery. If you take the Calcium tablets and experience constipation and/or frequent or uncontrollable urination, notify your Dr. He will probably order a Serum Calcium or Serum Ionized Calcium Level from the Lab. to check your levels of Calcium. Don't ever just decide to stop Calcium Tablets on your own...leave this decision up to your Dr. If your body needs the Calcium, it will not cause Constipation....so, do not have any worry over this. If you become constipated from Calcium it could be because of a high Calcium. In that case your Dr. will reduce the dose.

Stop worrying, if you can.....which is hard because the Parathyroid Hormone and/or elevated calcium causes people to be Anxious and Depressed.....all the more reason to get those parathyroid glands removed as soon as possible....they are harming your body and may be altering your brain chemistry to the point that you don't feel or seem like the person whom you used to be......not to yourself, and not to people who know you either. I think that once they are diseased, they become the "Glands From Hell". Some people become so severely ill over time with Hyperparathyroidism that they appear to have Dementia or some kind of Severe Mental Illness. Get em off ya!!!

Good Night All! "D"
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was2tired: I finally found your "novel" and I so appreciate you sharing your experiences from this dreaded disease. Our cases are somewhat similar, but I never had a high PTH level. Guess my calcium had been high for so many years the para glands had shut down. My Mother is deceased, but I am convinced she had HPTH, If only a Dr would have looked past her depression and other issues. We live in a rural area in Texas and I so believe the average Dr here has never heard of this disease. I too could write a novel on this. I am not a member of the healthcare community, but I knew in my heart my illness was not in my "head". I sat out on my own to find answers, get informed and to "talk" to Drs. Afterall they are "human" too. It took 7 months for my calcium to be in the normal range after surgery. The only issue I have now is lack of energy, but I am hypothyroid now too. Taking med, but it doesn't seem helpful. I would like to try the VitD3 supplements, but not a clue to how much to take. I do not get in the sun as I have some sensitivity there although that would help with depression. Again, sorry this is so long. Thanks so much for your informative posts and to timberswife, better days are ahead sweetie. Best regards, txg
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txg. nice to hear back from you. Your Dr can draw a vitamin D level. There are at least two kinds and it needs to be the correct version. The Vitamin D Level needs to be monitored on a regular basis until the range is appropriate. It may take awhile to get the right dose level down for you. Winter levels may differ vastly from the summer levels. The vitamin D deficiency for me, at least, is termed Secondary Hyperparathyroidism. Sometimes I think that it runs a close second to the Primary Hyperparathyroidism, except that you will always have it because of the destruction caused by the Primary Hyperparathyroidism. You can get Vitamin D3 from GNC or other vitamin suppliers. If you are deficient in D3, I doubl that you would ever need any less than 1000 mg. per day. Usually more than that, but it is best to let the Dr. determine that if you go higher than 1000 mg per day.

The MD Anderson Center in Texas does alot of research and treatment of Parathyroid Disorders. I have read quite a few things from there.

My intraoperative Calcium Level was so high on the first surgery that it set off a few Red Flags at the University of Michigan and I was referred to the Cancer Center for Genetic Testing. There is a Genetic Disorder called Multiple Endocrine Neoplasia Type I (MEN I). That disorder includes Hyperparathyroidism as well as many other features. My test was Negative.....but Negative in not proof of REALLY negative....they do ge occasional false Negatives due to a new line of genetic mutations. I do hope that my test was a TRUE Negative.....because the disease I refered to is a type of cancer. There is also a MEN II (A or B, I cant recall which one) and that also includes Hyperparathyroidism, but the occurance of that type is much rarer. All I know, is that I have had the occasion and forced necessity to learn way more things about this than I would ever have hoped to need in my lifetime. It is so terribly complicated, complex, and variable and difficult to diagnose Endocrine problems, and so many people are so terribly ill before it is even suspected, much less diagnosed.
I am feeling really radical about the entire issue and wondering how to get the word out everywhere to educate the public.......and especially to educate the Medical and Psychiatric Profession....where-in the knowledge seems to be sadly lacking overall. People are under-diagnosed, under-treated, mis-understood, mis-diagnosed, and in general, Underserved........and suffering horribly! It all makes me sick. My poor mom almost died from the direct complications of Primary and Secondary Hyperparathyroidism.....and, she was not even diagnosed until I DEMANDED the PTH Level, Calcium Level, etc be drawn on her. I knew that she had it as soon as I was diagnosed.....and she is way worse off than me. Anyone who compromises my Mother WILL hear from me in a major way. They did not want to even test her because she was 80 when I requested the tests. I gathered all manners of data from abstracts on Pub Med, Elsevier, Sage, and other credible Medical Data sites and presented the data on Parathyroidectomy improving the quality of life for old people by improving the quality of their health both mentally and Physically. It just sets my teeth when I imagine how many elder people, both men and women, are in facilities because their bones will no longer hold up their bodies......or because they are regarded as having Dementia.....when all they have is Hyperparathyroidism and are suffering the debilitating Mental and Physical Consequences of their undiagnosed condition,
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was2tired: I had my vitd levels checked after surgery which now has been over a year. They were a little low, but as my calcium was still not normal I was told not to take any supplements other than calcium and multi vitamins with D included. Just had labs and VitD was not included, now that I am hypothyroid that seems to be the only focus. I am sick of Drs with a one track mind..lol. Calcium is good, so I have decided today to add one d3 to the other supplements which will give me total 2300 I.U. I have no problems taking calcium supplements as some do. In fact my stomach has been so much better since surgery. No reflux at all. I agree M D Anderson Medical Center in Houston is the BEST! I have two family members as patients at the cancer center. If every medical center was run like MDA it would be great. imo. My first choice would have been to go to Houston for surgery, but not one endo, internist or GP I saw over the many years would or could diagnosis me. So I had to go out of state. I am trying to understand secondary hyperparathyroidism, lots to learn. I have learned the hard way that what is in the "normal" range for most is not normal for me. It still amazes me the many people looking for answers here and other sites. Very frustrating.. txg
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Hi everyone......It's been quite awhile since I checked in here. Mostly because I forgot how to get here. Found it today when I was going through my "bookmarks" list. Wow, a lot more comments and experiences on hyperparathyroidism. I had my surgery 11-17-08 and felt really good......for 3 weeks.....and then things started going back to not feeling well. Today, I don't feel well at all. I keep wondering if something is going wrong with my heart because I have some pressure in my chest and my upper back. It scares me, but I am wondering if another gland is going bad. My doctor ran some tests back in April and the calcium was in the normal range ( 9.2) but the PTH was going up again (79) I think.

During surgery they took out one that was an enlarged adenoma and checked the PTH level. It dropped to only 80 so they checked the other ones and found one that was only slightly enlarged and decided to take that one out too. They checked the PTH level again, in surgery, and it dropped to 25 so they closed me up and that was that. Now when I asked the endo about the test results in April he said it looks like the parathyroid glands are acting up again. This was in an email, seems they don't like to talk on the phone much. I'm thinking I might have to go back in for surgery again. If I do, I was going to tell them to take the other two out and put one back in my forearm. I heard that it can function from there, I don't know how, but then if it goes bad I wouldn't have to have my neck opened up a third time. Has anyone ever heard/had this done?

Then, my other concern is that I have Kaiser Permanente for insurance and don't really feel comfortable with their doctor's but there's nothing I can do. I even tried to get them to refer me out to Dr. Babak Larian in Los Angeles (my psychiatrist did the referral) but it was denied. I wanted the MIRP procedure done by him. My doctor said they would have to do an exploratory procedure on me because nothing showed up on my ultrasound, except some nodules in my thyroid gland, or on the sestamibi scan with dye OR on the MRI scan with dye. Now I have a nice 2 3/4" scar across the front of my neck, which is what I didn't want. I still have tightness when I stretch my neck up and it's been 7 months!!! I REALLY don't want to have to go through this again but hate feeling sick.

I was just going to make a little comment but got carried away, sorry. It's hard to stop sometimes when you get on a roll. Hope everyone else is feeling better. creativetouch
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Hi creativetouch: Good to see you back here, but sorry things are not as good as you would like. I have read good things about Dr Larian in LA . It is a shame you can't see the Dr of choice. The MIRP procedure was great for me. I had hyperplasia as I have stated far too many times on here...lol and I am glad my Dr doesn't remove all glands. If surgery is necessary again, please do your research on removing all glands. Check info from Dr Norman. Just a suggestion. Feel better soon...txg
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Hi Tex.....I'm glad you got to have the MIRP procedure. I've heard that they can take one of the glands, or a piece of one if that's all that's available, and transplant it into your forearm and it will do it's thing from there. That way, if needed they can go there to take it out. I don't really want all of them out because I know God put them there for a reason. I will be emailing the doctor that did the surgery and see if he will answer some of my questions instead of telling me to contact my regular doctor. I kept getting the run-around from doctor to doctor. I even asked for a 2nd opinion and when I saw that doctor, head and neck surgeon (head of the department), he said he didn't know why they scheduled the appointment with him because he doesn't do that surgery....sheesh. He then referred me to one of his colleagues who was the chief of the surgery department to do the surgery. He was classed as a "general surgeon" which made me a bit nervous. Apparently they don't have a specialist surgeon for this surgery. I guess I will have to ask for him if I need surgery again. Anyway, thanks for the quick response, take care.....CT
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creativetouch: Are you in the states and if so may I ask which one? There are list of many endocrine surgeons on many sites and major medical centers. I also think you need a second opinion. There may be a list on this forum. I would certainly do a search. It scares me to think you would let a surgeon implant a PTH gland in your arm. jmo..GP surgeons are good at what they do..general surgery. You need a endocrine surgeon or at least a endo that will get to the bottom of your problems. There are some great surgeons out there, but looks like you have one failed parathyroidectomy and please don't go for a repeat. Best of luck to you..txg
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Tex....I'm in California. The problem is that I have to use a doctor that is with Kaiser Permanante since that is my insurance carrier. I read somewhere online about the forearm thing when I was doing my research before I had surgery. Can't remember exactly where now that I saw it. Might have to try and look again.....CT
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creativetouch.....I also had to do the repeat parathyroidectomy. I really hope I'm done this time. My Endocrine Surgeon left a small piece of the last remaining Parathyroid Gland on My Thyroid Gland....he said he thought that I had been cut up enough. My incision is about 1 inch.

I don't know if all of the victims of Hyperparathyroidism who post here know this rather interesting fact......the average person has 4 Parathyroid Glands located on the outside of the Thyroid Gland ( one upper and one lower on both the right and the left of the Thyroid). This is usually the case, but, sometimes there are more.....up to 8 in some people in rare cases. They can be toward the rear of the neck, anyplace in the neck...not necessarily attached to the thyrid gland, or, they can be in your chest cavity (mediastinum). Pretty scary isn't it!

At the U of M, the Endocrine Surgeons are designated as GSE. This means General Surgery-Endocrinology. So, yes, they are General Surgeons who practice Endocrine Surgery primarily and are in general, qualified to do most any surgery.

Texgranny, I have an idea for you. Since the MD Anderson Center does so much research in Primary and Secondary Hyperparathyroidism, ask them who they would recommend for Endocrinology and/or Endocrine Surgery in your area. They may have good suggestions for you.
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was2tired.... I have new lab results and am somewhat concerned. Since you are the only one that has posted having hyperplasia, maybe you can help me. It took 7 months for my calcium to be in the normal range after surgery and it was 9.7 or so last time. New results show it still in the normal range but 10.3. I only take one calcium supplement daily, but of course calcium is in my multi vitamin. I have been feeling really tired lately so I began on my own this week VitD3 supplements. Guess I better stop them as I afraid the extra VitD will increase calcium more. What is your calcium range now? I know I don't have HPTH, but I think I feel better when calcium is lower. I do not eat much dairy products at all. I have done some research on M D Anderson and if they will accept me I plan to go when finances allow it. I have insurance, but LARGE deductible. The last 5 years with bone fractures and seeking answers for this disease has drain me emotionally and financially. Ok enough of the pity party. Look forward to your post. Thanks txg
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