Hello, I am a 39 year old female and am basically freaking out with the thought of a growth or tumor on my parathyroid! I had skin cancer removed in September and ever since have been anxious, losing hair, ect. Everyone said stress. I had numerous blood tests and all had calcium in the 10s.....highest being 10.3 but my PTH is 65 or less. Anyway, MD asked if I had been eating a lot of calcium...ooooookkkk??? I went to a new MD last week and she said my thyroid appeared big so she sent me for an ultrasound. The ultrasound showed "possible extrathyroidal ovoid mass that appears to be in conjunction with poss parathyroid disease." The new MD has no idea what to do so is sending me to a surgeon. Should I be scared? I go tomorrow but I do not want a biopsy. I have read Dr Norman's site and it appears I have this hyperparathyroidism. Do you think another more thorough ultrasound should be done? Do you know of anyone in Wisconsin that is a good surgeon or do I go to Florida? I am BEYOND scared!!
Hello KrisPPP. I saw your post and was wondering how you are doing? I was just recently diagnosed by my Endocrinologist with primary hyperparathyroidism. But I've been dealing with mine for 4 years so my diagnosis is confirming what we've thought. (Although for 3 years my GP didn't think I had anything worth addressing.) I'm looking myself for a surgeon hopefully in Louisville. But I saw your post and that no one responded to it, so I was curious how things have gone for you?
Hi! Thank you for responding. Well, I went to the surgeon over a month ago and he doesnt think it is a parathyroid tumor at all. He was not concerned at all but has suggested I see an endo to keep an eye on my levels, etc. Anyway, I am not going to see an endo in 2 weeks. I dont know what to think?
What symptoms are you having? How are you doing?
Thanks again and looking forward to hearing from you!
I have been having HPT symptoms of primarily fatigue and odd aches & pains since 2008. My first high calcium of 11 happened in 2008 but I didn't know there was a connection until 2011. I saw an Endo for the first time in Sept 2011 much to the annoyance of my GP who pretty much blew it all off. And I have now learned that that is pretty common because a lot of GPs don't see this condition enough to recognize the symptoms. Many of them are stuck back in the days of HPT symptoms being what is considered now the RESULTS of the disease: osteoporosis, kidney stones, and even stroke in the worse cases. Plus, before the advent of the MIRP surgery the old style surgery was so extreme it wasn't worth doing it until the symptoms were really bad. Now it can be treated much sooner. But because it isn't a really common disease many GP's aren't up-to-date on all of this. That's what the Tampa clinic is fighting I think in all of their rantings on their website about poor medical care pre-surgery. Even though they are pretty arrogant about it and make it sound like treatment is a walk in the park.
I am lucky in that Louisville is a large enough city that we have some good Endocrinologists who are up-to-date on this disease. So I have been working with a good Endo who knew what needed to be done to get a diagnosis. But the most important thing NOW is for me to find a good surgeon who has enough experience with the MIRP technique.
But in my opinion it all starts with a good Endo. If you see a surgeon too soon (i.e before you have a solid diagnosis) they won't want to do any surgery. I guess my concern for you is that you have gotten a good diagnosis from a good Endo.
I really hope this endo I go to on the 15th is good and listens. I was referred to her by the surgeon. The surgeon kind of blew this off and said there is no way I have this and IF I do, it is in the way beginning stages. He deals with HPT -- one of his interests/specialties. I just dont know what to think! My mom had this....she has since passed away so I cannot talk to her about it.
I am not sure if I am having symptoms or not. I have anxiety issues, but have most of my adult life. I have lost a lot of weight but I just had skin cancer removed so maybe from the stress of that? My calcium is normal now....the serum one was right in the middle. My parathyroid hormone is on the high normal though. I just do not know what all of this means. I was having aches and pains a few months ago, but not anymore. The new MD I am seeing, the one who had me go for the ultrasound, thinks I may have celiac or a gluten intolerance.
Kris - you have probably noticed that the HPT symptoms are similar to many other types of health issues. That is one of the things that makes it hard to get a handle on. Seeing an Endo is the right move. But if you don't get a good feeling that they are really familiar with this condition and are aware of the latest medical knowledge, find a new Endo. Even if it means going to another city. Just because your calcium has come back to normal does not mean you don't have HPT. It just means at that moment when they took your blood your calcium was normal. The fact that you've had calcium levels in the 10's with PTH levels over 60 is suspicious. What I would recommend is for you to read the info on Parathyroid.com until you know it and understand it. There's a lot of info there and it can be overwhelming to read it. I read it and read it until I felt like I really understood what they were saying. And they look at things differently than most of the rest of the medical community. Their attitude is high calcium, high PTH hormone - hyperparthyroid adenoma needs to come out. Not saying that is wrong, but most other surgeons don't take that approach. They follow more traditional criteria which according to my endo is high calcium, high PTH and normal vitamin D. That is to rule out the possibility that the HPT disease is caused by low vitamin D and not a adenoma. And the Tampa clinic is arrogant in that they think because they have done so many that whatever position they take should be the position the entire medical community takes! Problem is, the rest of the medical community doesn't work that way! But the info on Parathyroid.com is great info to learn about the disease. The better you understand it the better able you will be to discuss it with your Endo.
As far as my situation goes, I am going to wait until July due to my job situation to visit a surgeon(s). And I will have to decide whether I have a good comfort level with surgeons here in Louisville to do the surgery. I posted another thread on this site asking for feedback on surgeons in the Louisville area. My Endo is going to suggest surgeons, but I don't know how much experience surgeons here have. That's another reason I'm waiting until July. I want to see if I can find out who is the best in Louisville before then. I'd rather not go to Tampa if I don't have to. But I will go there if I don't find a surgeon I feel like has the experience to take care of this using the MIRP technique. And I think that's what it is all about with these surgeons - experience. If a surgeon doesn't see enough of these they don't become expert with the MIRP technique.
You are on the right track to get with a good Endocrinologist. It will take a while. I first saw my Endo in Sept 2011 and she just this past week felt like she had gathered enough data to make a solid diagnosis of primary hyperparathyroidism so a surgeon would be willing to discuss surgery. I think when you went to see a surgeon quickly, they weren't convinced because all of the criteria wasn't met. I know this post has gone on for a long time. But I was where you are and I understand how scary and frustrating this condition is - and it doesn't help that the medical experts don't often know a whole lot about it (and usually aren't willing to admit it). So you are left researching things on your own. I know if I had listened to my GP, I would have done nothing until I had osteoporosis, kidney stones and maybe a stroke!!
Thank you SO much for your detailed reply and suggestions/info. I truly appreciate it!
My mom had this condition and I really think I might, too! I would love to listen to the surgeon and hope I dont have it, but.......I had some odd symptoms a few months ago....joint pain, calcium in the 10's, mental issues so I think I do have this! UGH! I just don't want to admit it and wish it would go away. Wishful thinking, right? I do have low Vitamin D.....I wonder if that means anything? Per the MD, alot of people have low Vitamin D. Anyway, I am very intune with my body and I will press on until I find out IF this is what I have or WHAT I have. I hope this endo is willing to work with me and really help me...if not, I will go elsewhere, as you suggest. I have been on Parathyroid.com and it is overwhelming but so much good info. I wonder why this "disease" is so hard to diagnose. It appears a lot have it...even though it is supposedly "rare."
How do you feel about the surgery? I really hope you find a great surgeon closer than Tampa for you! That would be great. I agree, I will go to Tampa as well, if I have to. I just feel lost right now.....Thanks for the ear!!
It sounds like you are on the right track seeing an Endocrinologist. Just learn everything you can about HPT so you have a good understanding of the disease and can work with your doctor to get a good diagnosis. You might have to be patient. It may take a few months like mine did. My surgery will not happen until the fall most likely. But my symptoms are manageable until then and it's basically my choice to wait. I'll begin talking to surgeons in July. Hopefully I will find a good surgeon in Louisville. If not, I'll go wherever I have to go to find one I have confidence in. Take care and post back after you have seen your Endo.
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I am not thrilled with new endo. I cannot understand her and she prescribed 50K of D2 since my Vitamin D level is 25. Anyway, I read NOT to take this much IF you think it might be parathyroid. Now what? I am not sure what is going on!! She wants to do a live ultrasound this week to re evaluate but I am thinking of just trying to find someone else I can understand and who will take the possibility of parathyroid seriously. UGH!!