Discussions By Condition: Medical Stories

Secondary Hyperparathyroid?

Posted In: Medical Stories 48 Replies
  • Posted By: erni119
  • March 30, 2007
  • 05:45 AM

I hope someone can help me. I am now 66 years old, have suffered since I was in my 20's with fatigue and muscle pain, but during the last 4years have developed severe bone pain, skull pain and pressure, difficulty breathing and pounding heart. My feet and ankles feel sprained almost constantly. I have had Hashimoto's for years and take Synthroid, which was upped when this last flare occurred to 88's. I have MVP, and started throwing extra beats, in the 1000's after this, and was put on Sectral. I have been told I have Paget's (not), hyperostosis, which could not cause the head pressure and pain, occipital neuralgia, for which I received 2 cervical epidurals and injections into the occipital nerve (ouch) which didn't help. Bone scans of body show increased activity in joints, spine, and head, but no diagnosis or help. Had parathyroid tests, which consistently come back elevated, from 80-120, but blood calcium is normal. 24 hour urine showed kidneys were secreting calcium and cortisol, was give 1 dexamethasone and repeated, and cortisol was suppressed - nothing said about calcium leak. Was told to take HCTZ 12,5 to control it, but stopped after a 6 month course. Meanwhile the pain is so severe. Read Sally Pocholak RN posts, and am getting B12 shots, which help the depression somewhat. Went to NYC doctor who wants me on injected methotrexate, 10 mg. prednisone, Lyrica, Fosomax, and says I should have parathyroidectomy and surgery on neck for occiptal nerve pain. So many meds - all without complete history and tests. Frightened and don't know what to do, but bone pain is so severe and ribs, hips are so sore that iI is difficult to stay lying down in bed. My head pressure is so bad that I feel that I will pass out. I am not a neurotic woman, but I feel myself falling apart and am sure that whatever is wrong will finally kill me. Don't have problems with kidneys, but do have small kidney stone. Can anyone help me? Have been told over years I had MS, MG, fibromyalgia, chronic fatigue, autoimmune disorders, and have tried eveything, but now I am becoming almost phobic about meds. Please help me.

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48 Replies:

  • Hello:Have they done a complete thyroid panel to see if you are hyperthyroid? A person who has history of hypothyroid can also become hyperthyroid. What are your blood pressures? Some of the symptoms of hyperthryoid can be elevated blood pressures, loss of weight, increased appetite, headache, thinning of skin, fine/brittle hair, increased/loose bowel movements, insominia but feeling somewhat wired, muscle fatigue, heart palpatations, chest pain and chest heaviness. I'm sure there is more as you could find out on the internet. You don't have to exhibit every symptom for your thyroid to be out of whack. Also, a generic thyroid panel may not show it as some people are abnormal but it will show normal on the panel. An endocronologist would take it a step further and do special testing. Also, I noticed you are on several medications. Some medications do not have good interactions with others as well as causing nasty side effects. It's always good to be somewhat vigilant regarding the side effects of medications. Sometimes the cure can be worse than the disease!I'm not an MD but I do geriatric wellness and practice therapy at a skilled nursing facility. It is not uncommon for older folks to suffer from multiple pathologies. However, it is never good when people are prescribed medications without first finding out the root of the problem(in my opinion)Let me know what happens. I hope you can find some answers.Most Sincerely,Laura
    Anonymous 42,789 Replies Flag this Response
  • Dear Laura - Thank you so much for your answer to my questions on hyperparathyroid. Since I posted, I have seen an ent who specializes in parathyroid surgery, as well as thyroid surgery. I brought him whatever records I have, and he ordered more specialized thyroid tests, some of which I have never heard of, even though I have been on synthroid for years, and the normal tests seem to come back OK. My blood pressure is always normal or below, so that doesn't seem to be my problem, but I will hear from him next week, after he gets results of bloods and thyroid ultrasound, which I did. By the way, if this means anything, every time I put my head back for a test such as this, I get extreme vertigo - this time really bad so that I slammed my head into the wall. Thank goodness the tech was there to grab me. Once again, thanks for your answer - it makes me feel so much less alone and frightened. Erni
    erni119 14 Replies Flag this Response
  • I would definitely have your vitamin D levels tested. Also, if there is calcium in your urine, I would be very suspicious of hyperparathyroidism. I had high PTH, low vitamin and sporadically high blood calcium. I think, but am not sure, that some doctors trust 24 urine tests for calcium as much as the blood tests. The bone pain could be caused by osteoporosis--have you had a DEXA scan?I had parathyroid surgery and my PTH went back to normal, my vitamin D levels went up, my calcium level is always normal now and my bone pain decreased significantly--also, hear used to bother me and the surgery corrected that problem as well and my osteoporosis was arrested. The first endocrinologist that I went to kept telling me to take vitamin D supplements and they simply didn't work, so I went to anotther endocrinologist. If it's not your parathyroid, with the bone pain you have, I would research the Internet under "high PTH." There are syndromes and other conditions related to this. I would be concerned about the level of bone pain you are having and see another doctor if they try and blow you off. Keeo posting! I understand what you're going through...
    Anonymous 42,789 Replies Flag this Response
  • Once again, thank you for your caring and interest. Am still waiting to hear from doctor about parathyroid scan, etc . Had ultrascan of thyroid, don't know if parathyroid visualized or not, but after test with head back, had extreme vertigo, which I have had before, but this one was bad. Slammed my head into wall in back of me, and had to wait until it stopped. Thank goodness tech held me back, or it would have been worse. I am almost hoping (can't believe it) to have parathyroid surgery in the hope that it will help. Am a little concerned because putting my head back always makes me dizzy, but this one was special! Have cervical stenosis, so that might be problem. This doctor retested thyroid tests too, and maybe, just maybe, if he does do the parathyroid, he can remove nodules. Must have something to do with cramping and choky feeling in throat. Thanks so much to everyone who responds - makes it a little easier to know there are others out there with similar problems.Erni
    erni119 14 Replies Flag this Response
  • Hi,Alot of your symptoms and the cortisol in your urine can be caused by cushings. Have a look at www.cushings-help.com and see if you recongize the symptoms.Good Luck
    Anonymous 42,789 Replies Flag this Response
  • Check parathyroid.com .......Dr. Norman knows it all!!! PTH should not always be elevated.Greg
    Anonymous 42,789 Replies Flag this Response
  • I am happy I found you but I am having trouble logging in and hope I can post.I have had Hashimoto's for years and on Synthotid/Armour and back to Synthroid. I found a new Endo and she repeats everything and adds more. Her LVN called me and told me in Novemeber that I have a high PTH (120) and a low Vitamin D (OH). This was a 7. Calcium was 9.3. The Vitmain D 1.25 test was normal. I was unable to talk with her but LVN said she was not concerend as calcium was normal and the neck CT scan at the place she sent me was good and the ultrasound of the neck was also good. She put me on Calcifetrol (sp) and told me to come back in 3 months. I looked this up on line and found I did have symptoms of hyperparathyroidism but was so confused as calcium to my knowledge since BC has always been in the 8.4 to 10.1 range. Never higher to my knowledge.I found a doctor on line in my city that specialzes only in parathyroid problems. In Janaury-March, 2007, I was put thru the mill with tests. They were rather vague in giving out information to me and I was kept in the dark. My first test was a 4DCT scan of the neck. Was not told the results even though I asked. Blood work was taken again. PTH was still very high and calcium was 9.1 and D level was still in the cellar. They RX'd 50,000 units of Vitamin D to be taken twice a week for one month. They ordered a 24 hour calcium and that was 184. Normal ranges per Quest states: Females and more blood work.Then finally I was able to meet and see what this doctor looked liked. Prior, everything went thru the PA or the secretary or whomewver was kind enough to call me. This doctor told me that I did not have a Parathyroid disorder and that my D levels were back to normal (59) because I was a good girl and took my 100,000 Units of D every week. This doctor went on and told me to contine with over the counter D for the rest of my life. I was discharged.I picked up on the way out, at records dept, copies of my CT and Nuclear scans and was shocked to read that a Parathyroid adenoma appeared on the 4DCT scan done 2 months before the Nuclear Sestamibi scan that also showed a parathyroid adenoma and also the ultrasound showed a parathyroid adenoma. I called one of the radiolgists and he told me that this thing could kill me. I asked how, since my calcium is normal. No answer. I then got copies of the last blood work and found that I did not have a normal PTH Intact on the last test but that it was still in the 125 range. Calcium Serum was 8.6. They failed to tell me this.Now, I am trying to figure this mess out myself. I am getting into the sun more to keep the D levels normal but I do not know how to get the PTH down. I am so confusded as my calcium is normal, my PTH is high and on the 4D CT scan, Sestamibi scan and the ultrasound of the neck they all show a parathyroid adenoma.Am I from out of space? (-: I just do not fit the bill and I am sure this is why this supposedly parathyroid specialist dismissed me and probably hoped I would not read reports. Any clues? Thank You so much.
    Anonymous 42,789 Replies Flag this Response
  • vertigo? look-up bppv. Essentially debris in inner ear. You can do some prescribed rolling around the floor which will dislodge the "debris". hyperparathyroidism? I felt like I had the flu for a year and practically had to lay on my doctor's floor to get him to see that I felt really ill and I didn't need some Prozac as he suggested. My calcium blood levels were elevated, and after many tests, he thought the problem could be my parathyroids. My PTH levels were barely border-line, but the Sestimibi scan showed an enlarged para. After surgery, which was NOT just a week-end recovery surgery, I felt better in a couple of weeks. I think this is primary hyperparathyroidism. Hope this helps.
    rad-skw 1,605 Replies Flag this Response
  • I am sure Dr. Normam is well qualified for mini parathyroid surgery but only when a patient comes to him with a high PTH and an elevated Calcium Level. I am more complicated thus the reason for asking other patients if they have had the same and what was the outcome. Most endo's have not seen patients like me, i.e. High PTH, normal Calcium and postive scans. I would give anything if the next calcium levels were 10.5 and over. I would be jumping on that operating table as my symptoms are:Hair falling out, moans and groans? YES. Bone pains especially in the feet and lower legs, loss of stamina. too pooped to participate. two kidney stones, cataract, labile hypertension, calcified heart arteries, left ventricle hypothophy, same side partoid gland swelling, severe gerd/heartburn. I own stock in Nexium and Maalox. (-: Waking up 3-4 times during the night. ER visits for atrial fibilation. I saw on Good Morning America today that Dr. Tim Johnson was talking about vitamin D3 and up to 1000 IU daily. He mentioned that D3 was better than D2. Maybe..just maybe taking D3 for 3-4 months the PTH will decrease and the parathyroid adenoma will disappear. I can dream, can't I?
    Anonymous 42,789 Replies Flag this Response
  • In reply to the last two posts, first, thank you for letting me know I am not crazy. I am due for sestamibi (?) test on Monday, April 30., and then the ENT will let me know what he plans to do. He told me that he performs many surgeries on parathyroid growths, and, although I do not meet all the "normal" ciriteria, that means nothing. If it is hyperparathyroidism due to growth, he said it is minimally invasive, 15-20 minute surgery, outpatient, and that he will look into the nodes and goiter from the Hashimoto's thyroid disease I have, and might remove them as well. I, who hate going to doctors, have had such pain (bone) and feeling so crappy that I cannot possibly explain to anyone, unless they are going through it. I am embarrassed to even tell all of my symptoms to my friends and family, much less the doctors, since I have been treated like I am a nut or hypochondriac, or what is even worse, a nervous, stressed out woman who should take antidepressants. I am not stupid nor do I imagine what is happening to me, and the frustration is overwhelming at times. This doctor seems to listen, believe and I can't believe that I am actually hoping he will find the solution with the scan on Monday. I understand the frustration and anger and depression that people going through undiagnosed illnesses go through all too well, and hope that we all get the validation and help that we need. Thanks to everyone who replied to my original post. I will let you know what happens with the scan. Keep me in your thoughts, and I will keep you in mine. By the way, my blood calcium was also within normal range, my parathyroid levels were always high, and my calcium output in urine was high. This was dismissed until I went to this doctor, who said that my body was getting rid of the calcium through my urine, rather than raising it in my blood. Also, my first endo doctor said it was vitamin D deficiency, gave me the 50,000 units for a week or two, twice, and nothing changed, even though she told me I would feel so well that I would bless her children. Needless to say, I didn't. So keep you chin up and I will try to do the same.Erni
    erni119 14 Replies Flag this Response
  • Geez, Erni you sound exactly like me. I am "unregistered" and finally was able to get registered. I am the one who just posted about normal calcium and HIGH PTH and a parathyroid tumor seen on the Sestamibi scan and the 4D CT scan and also on the ultrasound. I have been on parathyroid.com (Dr. Norman's site) that one poster mentioned BUT, he does not talk about people with normal blood levels, of calcium. He indicated HIGH PTH and elevated calcium in the blood = parathyroid tumor that must come out in this mini surgery he does in Tampa. He also mentions that 24 hour urine collection for calcium is not always that accurate. His sight, of good information could take me days reading it. Yes, I would love to get this bugger out as here are this nutt's (me)symptoms. (-: Kidney stones (2) Low vitamin D, Hair falling out, gerd/reflux/heart burn. I drink maalox and eat nexium like there is no tomorrow. Bones ache in my feet. No concentration, calcium in heart arteries, ER visits for Atrial Fibrilation, Left Ventricle Hypothothy, labile hypertension, stomach pain, upper back pains, cataract, No stamina and the list goes on. They did a bone scan and I have Osteopenia in both right and left fermoral bones. I can barely stand as I get so tired that my elbows have calluses on them from leaning over on counter tops and desks to hold me up. I am a mess. LOL I want my calcium in the blood to go high so I can have this thing removed. Mine is on the right side (per all the scans) My first ENDO (female) told me I would feel great on my Vitamin D too. Ha Ha. Then I went to another group and no answers. I am in Texas. I want to start to feel good and I know you do too. Pls. keep me posted. I wish you well.
    Marypat 6 Replies Flag this Response
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  • I read that Primary hyperparathyroidism is when Both Calcium and Parathyroid hormone is elevated. If PTH is elevated and calcium is not..this falls into secondary hyperparathyroidism....There is a third group also called Teritary (sp) hyperparathyroidism. I do not think doctors want to do surgery unless both the serum calcium and the parathyroid Serum levels are both elevated. I also read with an enlargement of the P gland without an elevated calcium level the physican needs to find the cause/reason for this as other things can cause this. I am not a doctor...just sharing what I have read on line whether this is correct or not.
    Anonymous 42,789 Replies Flag this Response
  • Reply to MaryPatYou are right - have had all the same things happen to me except I won't know until next week if there is really a tumor on parathyroid. But ER, bone pain, osteopenia, everything else including being so frustrated. This doctor told me that it is not necessarily secondary hyperparathyroidism with normal blood calcium if you are leaking calcium in your urine. Have you had 24 hour urine test? Mine was elevated and he feels this is why my blood levels are at high normal. I think I understood him to say that if there is a growth on parathyroids, has to be removed. Why don't you do a search of best doctors in your area, or call a teaching hospital and ask for a Ear nose and throat (otolaryngolist or something like that) or Endocrinologist who specializes in parathyroid surgery. That's how I found this guy - he does a lot of parathyroid surgeries in a good hospital. Was also given one in NYC, but prefer to stay in NJ if I can. I too will jump on operating table if it will help me. Not my usual practice - stay away from doctors and surgeries as much as possible.Will let you know what I find out, and please check about parathyroid specialist - have to get one who operates frequently and with minimally invasive surgery otherwise you are getting someone who is not up with the times. That much I have found out. Keep in touch.Erni
    erni119 14 Replies Flag this Response
  • Hi there erni. I was at one of the best places and they are confused. They told me this could kill me and I asked how will it kill me if I do not have high calcium levels in the blood. So, I called a Professor at a large hospital in head and neck surgery and he too was stumped when I told him that my blood calcium has always been normal. He ran a sed rate, ana, ssa/ssb, cbc and some other tests and all were normal. He then called an endocrinologist and I see him in 2 weeks. I also e-mailed another parathyroid surgeon and he said NOT to have this parathyroid removed. Apparently there is Normal enlargement caused by other things other than a primary parathyroid adenoma. I had the 24 hour urine and the calcium is 186. They said it was a little high normal as the normal range is I did some reading and many things can cause an enlargement other than having a primary adenoma. I will not have it removed even though the tumor is seen on all three tests unless I see high calcium levels in the blood. I cannot take that chance. I have to be 100% sure that this is the right thing to do. Erni, have you ever in the past had stomach surgery or do you have Celiac disease. This was asked of me recently.
    Marypat 6 Replies Flag this Response
  • Erni, I found a very interesting artical last night and the URL # was sooo long, I could not see to type it out as I have a catarat. This is very much like my case. I also have the dyspena and dyphagia they mention. Seems the key is fine needle aspiration but this all has to be discussed with my doctor. I am forwarding this rare case (as they said) on to the Professor of head and neck surgery as I feel so sure this could be me. I do not understand all of the medical lingo and the PTH elevation. etc. etc. but I am sure this Professor can figure this out for me. I still will see the Endo he referred me to and share this also. I e-mailed another radiologist last night who read the CT neck scans in November that did not show this parathyroid adenoma like the recent one did. I do know that the November films show thyroid adenomas that are close to the jugular and trachea. This shows up on my Novemeber CT report but perhaps these are Parathyroid adenoma's. This is mentioned in this artical. The key here is to be darn sure these doctors know what they are looking at and looking for and know the difference between a Volks Wagon and a Mercedes. (-: I found this via google search. See if you can pick up: Parathyroid Cysts: description of two cases and review of the literature. Authors E.Mevio, E. Gorini, M. Sbrocca, L.Artesi, M.Mullace, S.Lecce. Dept. of Otorhinolaryngology, Magenta, Italy. I am not saying this is your case but we cannot leave any stones unturned. My Best To You.
    Marypat 6 Replies Flag this Response
  • Haven't read all of the threads on this but just wanted to add...My husband recently had symptons of not feeling all that great, blood pressure getting higher and higher, recent blood work showed "elevated calcium" but not alarming, etc. Well, only because we took him into the ER with his blood pressure soaring did they finally run a bunch of tests and even after all of the tests they were only able to say they "THOUGHT" it might be his parathyroid. I was amazed when the doctor came out after the surgery to explore that he said "it was the biggest parathroid I have ever seen in my career, the size of an egg!" It was only one for the four that was enlarged which is the way it happens apparently and it could not be detected in any other way previously despite it's size. So if you think it ain't right it probably isn't but don't want for some postitive test results because you will wait until you DIE. After the surgery, my husbands blood pressure went down quite a bit, calcium is normal and he feels better. We are old, what do we really expect? Dancing with the Stars?
    candicehudson 24 Replies Flag this Response
  • I am finding this thread very interesting. I researched this for weeks and months some time ago and I still have not had surgery. Why? My serum calcium always falls between the Lab's range of normal. My 24 hour urine calcium does the same. My Vitamin D (OD) flucuates from very low to high normal. My PTH is sky high. My creatinine/Bun/Phosperous/Magnesium always have been normal. The only other abnormal finding on many of the reports beside the High PTH is Thyroglobulin antibody. This is always in the high 200's. Normal is <40. Also seen is a low Globulin level and a high Albumin/Globulin level. No one knows how to interprt these. Years ago I jumped on the operating table and I had a terrible surgeon. Back then I believed everything a doctor told me. I do not do this any more. I have to have all the facts and check them thrice and so far I do not fit the picture of a Primary Hyperparathyroid patient. I too have symptoms (and even had a high Oxlate Calcium kidney stone) but missing an important lab value, elevated calcium.
    Anonymous 42,789 Replies Flag this Response
  • Marypat - Went online to the web page you suggested about cysts - interesting - I don't know if you have the feeling of choking or pressure and squeezing in your throat like I do. I made a copy of it - will give to surgeon when I see him so that he can think I am a nut - don't care anymore. Read the post from Candice - scary - but I have low to normal blood pressure and don't think that is my problem. Don't know what my problem is. Going for sestamibi scan on Monday - a little anxious because I just feel so lousy that I really don't want or need anything else to make me feel bad. Bad day - feeling sorry for myself and so tired of being tired and hurting. Does your head hurt? My head, skull & scalp are so sore and achy and the pressure inside there and my ears is bad, especially today. Don't sleep well, irregular heartbeats and just hard breathing - not hyperventilating, just not getting enough air - maybe we are another two rare cases. Don't give a s - just want to feel better. Bones hurt so much, stomach always hurts, just falling apart. I remember my husbands friend who is a doctor (no help) said when I told him parathyroid diagnosis, maybe, stones, bones, groans and moans, and laughed. Very funny. Let me know what to expect from scan. Maybe will make me less anxious. If you want my email, it is erni@optonline.net. Thanks for listening.Erni
    erni119 14 Replies Flag this Response
  • Research Dr. Norman's site very carefully. He describes your high pth "normal" calcium situation in detail!!
    Anonymous 42,789 Replies Flag this Response
  • I am following this thread and I cannot find on Dr. Norman's site where this is talked about. Dr. N's site is lengthy and could take hours/days to read and weeks to digest if not a medical professional. I too have normal calcium readings and postive PTH serum and positive sestamibi scans. I am a mystery. Signed: Moans,Groans and a Stone.
    Anonymous 42,789 Replies Flag this Response
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