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I have been ill for a decade now and although I have been diagnosed with both subclinical hyperparathyroid d disease and secondary hyperparathyroid disease, I have ruled out the possibility of low vitamin d because I can' t take any D it exacerbates symptoms even on a dose of 50 International units for 1 day. In the past I have had slightly elevated calcium 2x, elevated pth(double normal ) twice, large amounts of calium in my urine , and slightly elevated ionized calcium. I can no longer eat dai ry or red meat and I drink 5 litres of water. I am taking both a motility drug and colonoscopy prep for extreme pain and consipation. My symptoms are severe fatigue, cognition problems musce aches, insomnia, abdominal pain with elevated Amylase. Everything from adrenal, liver, kidney, chronic, fatigue, cancer has been thouroughly investegated and ruled out. I have studied for 10 years and although the Endochrinoligist knows that I probably do have Hyperparathyroid disease, In Canada we do not have anything like MIRP-so that I must go to the U.S. I recently sent everything to Dr Norman where I was told (understandibly that I must get new blood levels, but that He-being Dr Goodman was unsure. I even have pth and Calcium up together but he says he does not know and we may have to wait and watch!!!!!!! for a year .All this after 1500 dollars and he told me that Dr Norman has not reviewed this yet . I just did the blood tests which will probably show high normal PTH and Calcium. Dr Goodman did not listen when I told him that I am doing everything to manipulate the calcium because I have no choice, I also have next to no vitamin D as result!!!! I am absolutely devestated over this and I would love advice on what to do next. I have worked 10 years to save for this operation as well as having to sue the Canadian Gov who kept me on welfare as they had no diagnosis. PLEASE PEASE HELP!!!!!!
DESPERATE

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Hi, I am here in the states and my boyfriend has many of the same problems that you have. He has also spent hundreds of thousands of dollars on his medical as he has been going to hospitals for over 10 years and even traveling to the mayo clinic in Minnesota and staying there for a week at a time because the Mayo clinic here doesn't fully accept blue cross blue shield health insurance. I would definitely get health insurance the best that you can possibly get it may be a bit more expensive to get the best coverage, but it will pay off in the long run as you will be saving thousands on doctor visits and tests and everything else.

My boyfriend and I are still in search of a diagnosis along with many specialists and doctors, but they seem to just say he has anxiety and he needs to just continue taking the meds they are giving him even though they make him feel worse and if he doesn't take the meds, then there is nothing they can do for him.

If you don't mind me asking what are the symptoms of having hyperthyroidism? I think this is what my boyfriend has, because he is always light headed, has gastrointestinal problems, his food does not digest properly, he has anxiety, heart palpitations, racing heart beats, etc. Any information you may have on this disease would be very helpful. Good luck with your medical issues and I hope you feel better. Thank you
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Hi -I hope this post works because I am new at this!!!!The symptoms of parathyroid disease tend to differ from person to person-check the websitefor the best info. Sorry but anxiety -I am not a doctor but that just sounds crazy. The definite signs of parathyroid are a raised PTH hormone level and high levels of serum calcium but thet vary a lot and can go up and down which makes the diagnosis impossible a lot of times. Fatigue, gastro symptoms heart palaitations, insomnia thirst, headaches are just some of the symptoms. I actually have a great gastro doctor, who god love him taught me as best as he could. Please feel free to ask any specific questions-I will do anything to help!!!!!If you have all of your boyfriends records look for calcium counts and see if they are even high normal or slightly elevated!!!!!

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Hi, thank you for your reply. I do have one question do you know when it is best to check your calcium levels and if you should fast before the test is done? Since they go up and down I'm sure depending on what and when you eat it would be very difficult to diagnose him with calcium deficiency or too much calcium in the body. All of his symptoms have been worsening over the years and since most of his tests were taken a few years ago I think we should get him retested for his calcium levels so we can get a accurate reading and either rule it out or look more into it. Thanks
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Hi Zebraland - I'm sorry that you are having so much trouble. Parathryoid disease can be very frustrating. There are a number of excellent surgeons in the US who do MIRP. You might do a search for Dr Babak Larian. He did my surgery over a year ago and I couldn't be more pleased. You can call or contact them through the website. He is very good about calling and answering your questions.

Morsal - Please be aware that thyroid and parathyroid are different glands and have different functions. You will learn much from parathyroid.com. Repeated tests, like 3, that show PTH and calcium to be out of range, are a good indicator of hyperparathyroidism. The function of the parathyroid glands is to regulate calcium, so if it is out of range, the glands aren't doing their job. The PTH bounces up and down as it tries to control the calcium level. That is why you should have several tests. I have seen debate about whether it is necessary to fast for the blood tests. Most people, including my endocrinologist say no - in fact, they usually draw the blood whenever I am in the office. I have done it both ways and haven't seen a difference in results. When you study the website, you will see that it is possible to have normal PTH or even normal calcium (I did) and still have a parathyroid adenoma.

I wish you both good results. mass
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Hi, again I just got back from medical records and picked up one of the many test results of my boyfriends and we see on here he had a calcified granuloma upper left lung. Does this have anything to do with hyperparathyroidism or the endocrine system? I am looking for a doctor now in AZ who might be able to help, but there are very few in the scottsdale area. I really would like to narrow down what he might have before we go into a doctor and have a bunch of tests done again just so they can say there's nothing wrong with him. Thank you so much for your help I really appreciate it.
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Thanks zebraland for the website it was very informative. Turns out my boyfriend has 15 out of 18 of the symptoms of parathyroid disease. I have contacted the endocrinology center of arizona and am waiting for a reply to take the next step and either rule this out, or treat it. I will let you know how it goes. Thank you
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Well, we went to the E.R. just now because my boyfriend had a migraine that lasted for 6 days straight along with dizziness and finally decided he couldn't take it anymore. While we were there I asked them to do a calcium test and unfortunately it was normal 9.1, so I think that rules out hyperparathyroidism and we are on to try and find a new diagnosis. I am very saddened by the results as if this was positive he would have been able to cure acid reflux, heart palpitations and migraines with a small 20 min operation. Now we are back to ground zero, but still are going to see a specialist to run some tests and see if anything comes up. I will keep you updated :-)
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Hi-this is just awful-you should still keep in mind that 1 normal calcium level does not rule out hyperparathyroid disease!!!!!-Even when the symptoms are so awful. Is there any explanation for the calcified granuloma on the lung? That may also be a good place to start!!!!!.
Keep in touch !!!!!! I don't see why the lung was not tested further if it showed calcification. I hear there is a Mayo clinic in Arizona , Does your insurance cover that?
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Hi Mass thank-you yes the amazing Dr Larian not only spoke to my endochrinologist but he wants to know why the canadian Surgeons won't do an exploratory surgery. Unfortunately they don't do that. He wants to do this surgery himself but he says he can't price it and without a sestamibi that is possitive it could be very expensive.LUCKY YOU WHAT AN AMAZING MAN FOR ALL AMERICAINS THAT ARE LOOKING FOR A GREAT SUREGEON!!!!!!HE IS A WONDERFUL ADVOCATE !! AND SURGEON!!!!!!!
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YES! I don't think I would ever have gotten to to surgery without him. I'm glad you at least got to talk with him.
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