We've checked my PTH six times in the last four months and it has ranged from 88 to 128. The last time was the highest. The Vitamin D has been normal the last two times, that 's why the endocrinologist now thinks the PTH is primary rather than secondary. That's what Dr. Norman says anyway. He is a surgeon and not an endocrinologist but he has more experience than anyone in the world and with thousands of cases, he knows what he finds.
My Trigeminal Neuralgia is mild compared to most other patients. My chiropractor was able to get rid of it for nearly a year. It came back a few months ago but with twice weekly adjustments it is minimal but still uncomfortable. The chiropractor says it is in the alignment of C2 and it makes sense to me that an enlarged parathyroid could affect the alignment of cervical vertebrea. One of those things that no one knows, I guess. I also have several thyroid nodules including one rather large one that has been biopsied.
I am 65 and I am not taking anything for the osteoporosis. When we discovered it my osteopath recommended high doses of calcium, magnesium, Vitamin K and Vitamin D. I stopped taking them when we discovered the high PTH. I have refused Fosamax, Evista, etc because of the possible side effects. Most things I have read say that they won't help when the PTH is high. I called the drug company and asked if Evista would help when PTH is high and they said they didn't know as it hadn't been studied. I'm just not convinced that those medications are worth the risk but maybe that's because I've been fortunate enough to not have fractures. I might reconsider if I have surgery.
It really helps to share these things with other patients. Thanks
My Trigeminal Neuralgia is mild compared to most other patients. My chiropractor was able to get rid of it for nearly a year. It came back a few months ago but with twice weekly adjustments it is minimal but still uncomfortable. The chiropractor says it is in the alignment of C2 and it makes sense to me that an enlarged parathyroid could affect the alignment of cervical vertebrea. One of those things that no one knows, I guess. I also have several thyroid nodules including one rather large one that has been biopsied.
I am 65 and I am not taking anything for the osteoporosis. When we discovered it my osteopath recommended high doses of calcium, magnesium, Vitamin K and Vitamin D. I stopped taking them when we discovered the high PTH. I have refused Fosamax, Evista, etc because of the possible side effects. Most things I have read say that they won't help when the PTH is high. I called the drug company and asked if Evista would help when PTH is high and they said they didn't know as it hadn't been studied. I'm just not convinced that those medications are worth the risk but maybe that's because I've been fortunate enough to not have fractures. I might reconsider if I have surgery.
It really helps to share these things with other patients. Thanks
HAS ANYONE HEARD THAT IF YOUR VITAMIN D BOTTOMS OUT WHILE IN SURGERY YOU CAN DIE?? MY VITAMIN D IS '18'...I WAS ON 50,000 UNITS OF D FOR 5 MONTHS, NOW 1,000 UNITS OF D, WHICH I'M STILL ON....
Hi wanting To Heal: My Vitamin D is low but I don't remember my numbers. I just wonder if it has anything to do with my low energy level. I am 2 months post surgery. How do you feel now? On a scale 1-10. I had not heard about the vitamin d problem while in surgery.
I've never heard that about Vitamin D - do you have a source? I ask because mine was so low it wasn't even registering on the tests, and yet - I lived through surgery.
This is scary. I would love to know the source of this info. I think anyone with hyperparathyroidism has a vitamin D problem.
THE ENDOCRINOLOGIST I AM SEEING SAID THAT IF MY D BOTTOMED OUT I COULD DIE...ALSO MY PARATHYROID HURTS (OR SOMETHING ELSE IS GOING WRONG IN MY THROAT AREA.....MY SURGEON SAID HE HAS NEVER HEARD ANYONE SAY THE PARATHYROID HURTS....WHAT ADDITIONAL TEST SHOULD I GET??? CT SCAN? PET SCAN? MRI? I DO NOT WANT TO HAVE SURGERY IF I'M HAVING A SYMPTOM NO ONE ELSE HAS EVER HAD 'PAIN IN THE AREA OF THE PARATHYROID THAT HAS TO BE REMOVED'...PLEASE REPLY SOON...
THE ENDOCRINOLOGIST I AM SEEING SAID THAT IF MY D BOTTOMED OUT I COULD DIE...ALSO MY PARATHYROID HURTS (OR SOMETHING ELSE IS GOING WRONG IN MY THROAT AREA.....MY SURGEON SAID HE HAS NEVER HEARD ANYONE SAY THE PARATHYROID HURTS....WHAT ADDITIONAL TEST SHOULD I GET??? CT SCAN? PET SCAN? MRI? I DO NOT WANT TO HAVE SURGERY IF I'M HAVING SURGERY YET UNTIL I FIND OUT WHY I'M HAVING 'PAIN' IN THE AREA OF THE PARATHYROID THAT HAS TO BE REMOVED...MY VITAMIN D IS '18', CALCIUM IS 11.1, TSH IS 4.7, PTH IS 146, 24 HOUR URINE IS 329.4....I HAD A TOTAL HYSTERECTOMY IN MARCY 2004...I'M NOT ON ANY HORMONAL THERAPY...I DON'T HAVE ANY SYMPTOMS OF HYPERPARATHYROIDISM YET...I'M GETTING LABS EVERY 4 MONTHS...UNTIL I FIND OUT WHERE THIS PAIN IS COMING FROM, I'M NOT HAVING SURGERY....PLEASE REPLY ASAP
Wanting to heal: You so need expert advice. I know nothing about Vitamin D levels. I do know this for sure, if your calcium is high and your PTH is high you have a tumor and it needs to be removed. Having said that NOT all people have symptoms and doctors must go by lab reports or the sestamibi scan. The scan should not be the diagnosis tool as it could be negative. Mine was and I had three parathyroid tumors. Hyperplasia. I had the million dollar workup many times trying to get a diagnosis and finally took matters in my own hands and found a surgeon I could trust. Is your thyroid normal? Hyperparathyroidism is very complex and I don't think any two people are the same. It is very frustating to feel so bad and you think no one is listening. Trust yourself. Be your own health care advocate. Ask questions until you get answers. You know your own body. The pain in your throat confuses me. I did have a soreness on my left side and always kidded with my husband that if I had a tumor that is where it is located. Well when I had my surgery I got pic of tumors, I had two on the left side. Go figure! Take care....
My throat felt (and still does feel) like there's a great big lump in it. It's not unheard of with a parathyroid tumour.
TexGranny is right - you need to find an expert. Preferably one near where you live, but if you're in a small country, you may be out of luck there.
I do wish you the best. And yes, you need to get the tumour out.
TexGranny is right - you need to find an expert. Preferably one near where you live, but if you're in a small country, you may be out of luck there.
I do wish you the best. And yes, you need to get the tumour out.
I have been back and forth on whether to get the surgery. My PTH was 172 and calcium 10.8 at the last test. When I saw that people are commenting that they have difficulty concentrating after the surgery it fits with what I have seen with people I know who had the surgery. One had minimally invasive surgery-with a 8 inch incision! Since then this person seems so out of it and hard to have a conversation with-can't focus but does not realize it and appears to have little energy-a big difference from before the surgery. I don't think the doctors know everything about what the glands do and taking them out seems like they are trying for a quick fix to a complicated problem. I have not heard from anyone who really feels better after the surgery and most people I have heard from or about don't seem to have any better quality of life and seems like their health continues downhill. Since I don't really feel bad now other than tired I don't want to do it.
Guest: I so hope all the posts here have not led you astray. With your labs you have Hyperparathyroidsim and need surgery. We all were and are looking for a miracle cure. My Dr only gave me 80% that all my symptoms would go away. As sick as I had been for years that was pretty good odds for me. I so TOTALLY believe that if I had gotten a diagnosis earlier my recovery would have been better. I still would have surgery with the same surgeon and go to the expense of travel etc. This disease NEVER gets better and will only rob you of a good quality life. My life after surgery is better . Am I where I want to be? NO. I believe with all my heart I had this disease 10 years or more. Find a good surgeon. 8 in. incision..YIKES..mine was so small. 10 weeks tomorrow since surgery and you can barely see my scar. Good luck to you on your decision, as you are the only one to decide. Depression is a symptom of this disease and it hinders our well being. Keep us posted...Best regards...TXG
I have hyperparathyroidism and have told my Dr. I will not have surgery
as I am always trying to find non-surgical remedies for cures of diseases
I have done months of research-there is a prescription drug for this, plus
lowering calcium is possible with lasix, drinking LOTS of water;
I don't have my papers of research in front of me, but there are new,
non-invasive procedures that have worked, such as cryosurgery, rf ablation, but only go to highly expertise top-of-the-line hospitals such as
univ of pa. etc. I did a google research, which helped a lot.
Research-research-research. You may find the answer of what to do.
Try researching alternatives to surgery, etc.
Juli
as I am always trying to find non-surgical remedies for cures of diseases
I have done months of research-there is a prescription drug for this, plus
lowering calcium is possible with lasix, drinking LOTS of water;
I don't have my papers of research in front of me, but there are new,
non-invasive procedures that have worked, such as cryosurgery, rf ablation, but only go to highly expertise top-of-the-line hospitals such as
univ of pa. etc. I did a google research, which helped a lot.
Research-research-research. You may find the answer of what to do.
Try researching alternatives to surgery, etc.
Juli
Good luck to you. Keep us posted. This disease can control your life if you let it. Txgranny
I had a parathoridectomy in January 2008 after a long period of problems and problems getting a correct diagnosis or surgery. I had one adenoma removed that was benign. I noticed immediate improvements in cognitive functioning that continues to improve. However, I feel like I have the flu with such pain that I often wonder if it is worth living with such pain. I gave up on doctors when I had such a problem getting a correct diagnosis and getting a surgeon to take me seriously. The pain is like having the flu--my whole body hurts to the point that it feels numb and the pain keeps me up or wakes me up at night. Half of the time, tramadol is effective in controlling the pain. However, tramadol does not help at night when I sleep. I have known I was not crazy but have also known that most doctors will tell you you have a psychiatric problem if they cannot figure out what is wrong with you. I have very little faith in the medical profession's ability to think outside the box.
It has been almost 7 months since my parthyroidectomy, and I think I am about 80% disabled from being able to work or do daily activities without pain pills that work only half of the time.
I was gratified to find this discussion to see that I was not alone in this experience.
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It has been almost 7 months since my parthyroidectomy, and I think I am about 80% disabled from being able to work or do daily activities without pain pills that work only half of the time.
I was gratified to find this discussion to see that I was not alone in this experience.
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Have you had lab work done lately? what was your calcium and pth levels?
Are you taking calcium supplements and multiviamin? I am so sorry to hear of all your pain. That is the kind of pain I had before surgery. I am three months post surgery. It is very hard to get a doctor to take this disease seriously. They all think we are nut cases...lol..have you spoken with your surgeon? please don't give up there is a doctor out there for you. do you mind posting what state you live in if you are in the US.
Are you taking calcium supplements and multiviamin? I am so sorry to hear of all your pain. That is the kind of pain I had before surgery. I am three months post surgery. It is very hard to get a doctor to take this disease seriously. They all think we are nut cases...lol..have you spoken with your surgeon? please don't give up there is a doctor out there for you. do you mind posting what state you live in if you are in the US.