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Parathyroid Disease
Does anyone know how to go about getting your parathyroid checked? Someone mentioned it to me and after looking up the symptoms I have 90% of them. I also went through my previous lab work and my calcium level in January was 9.3 and in April it was 9.9 (range of 8.4-10.2). Based on that and my symptoms which I know could also be Hashi related should I look into the parathyroid?
I was diagnosed with parathyroid disease. I Googled parathyroid disease and found the Norman Parathyroid Center in Tampa, Fla. If you go to their site, it will give you every bit of information you can imagine on the disease.
Lack of interest and apathy are also signs of hyperparathyroidism. Sometimes I've felt like just giving up, too. If it wasn't for the fact that I have a small child, I probably would have given up. I just want to be whole again, so I can play with my little one.
Your D levels and jump in calcium is a red flag. Your endo should look into parathyroid disease. I know for sure that I was really sick when my calcium was anywhere above 10. Who knows, maybe if you get your tests done weekly for three weeks, your calcium could jump around in the high tens, too. If your endo dismisses you, then please look for a new one. You shouldn't have to feel sick all the time.
:) Tamra
Your D levels and jump in calcium is a red flag. Your endo should look into parathyroid disease. I know for sure that I was really sick when my calcium was anywhere above 10. Who knows, maybe if you get your tests done weekly for three weeks, your calcium could jump around in the high tens, too. If your endo dismisses you, then please look for a new one. You shouldn't have to feel sick all the time.
:) Tamra
1 Comments
I agree with you on that one
The TSH and FT4 are tests done for thyroid, there is another one T3.
It really depends on the doctor on what test they order for the thyroid. Some just order the TSH and that is all.
I have only had the Vit D, I have had low potassium, low cortisol, low Vit D , and low B12 . I just get so frustrated in trying to figure it out that I try my hardest to ignore symptoms. I only went last week for my yearly check up with her that is the only reason I went, I don't expect answers.
It really depends on the doctor on what test they order for the thyroid. Some just order the TSH and that is all.
I have only had the Vit D, I have had low potassium, low cortisol, low Vit D , and low B12 . I just get so frustrated in trying to figure it out that I try my hardest to ignore symptoms. I only went last week for my yearly check up with her that is the only reason I went, I don't expect answers.
Danielle, my hubby is driving me in our motor home. Most patients stay at nearby hotels (his patients get discounts).
Here's why I choose him. First, he's not going to do the 2-3 hour exploratory surgery, which increases risk of staff infection, complications, etc. It takes about 18 minutes. He patented a device that locates the parathyroid, so he doesn't need to cut you open, leaving a 6-10 inch scar. He puts a medical bandaid on your neck and you go home a few hours later. Many of his patients go back to work the next day. We're taking the little one to Disney World. Also, he does more of these surgeries than anyone. Parathyroid is what he does. If I so happen to have a goiter or nodules, he'll remove those, too - the cut will still be one inch. He advocates for patients with 'mild' disease, whose endos insist they wait until their calcium gets worse. He does not need you to get a senstamibi (spelling?) scan or ultrasounds. You just need to have the right labs, serum CA and PTH weekly for three weeks.
Here's the downside. The procedure is about $11,000. Most of that goes to the techs, and the hospital, not the surgeon. My insurance will only pay about 40 percent, but I have Tricare, and that's expected. His office does set up payment plans for those with no insurance. Many insurance plans cover his surgery, though. You'll have to check into it if you're interested in him. For the out-of-state consultation, you will have to pay $1500 up front. Most insurances will not cover that part. I'm at the point, where it is totally worth it to have a real parathyroid expert look into my case. He has called me twice so far to talk about my condition, and he gives all his patients his cell number. He has ordered new labs for me because my endos ordered the wrong calcium tests. I don't have to go through endos anymore, just him, which is a huge relief.
Visit his site www.parathryoid.com if you're interested. I won't go to anyone else.
:) Tamra
Here's why I choose him. First, he's not going to do the 2-3 hour exploratory surgery, which increases risk of staff infection, complications, etc. It takes about 18 minutes. He patented a device that locates the parathyroid, so he doesn't need to cut you open, leaving a 6-10 inch scar. He puts a medical bandaid on your neck and you go home a few hours later. Many of his patients go back to work the next day. We're taking the little one to Disney World. Also, he does more of these surgeries than anyone. Parathyroid is what he does. If I so happen to have a goiter or nodules, he'll remove those, too - the cut will still be one inch. He advocates for patients with 'mild' disease, whose endos insist they wait until their calcium gets worse. He does not need you to get a senstamibi (spelling?) scan or ultrasounds. You just need to have the right labs, serum CA and PTH weekly for three weeks.
Here's the downside. The procedure is about $11,000. Most of that goes to the techs, and the hospital, not the surgeon. My insurance will only pay about 40 percent, but I have Tricare, and that's expected. His office does set up payment plans for those with no insurance. Many insurance plans cover his surgery, though. You'll have to check into it if you're interested in him. For the out-of-state consultation, you will have to pay $1500 up front. Most insurances will not cover that part. I'm at the point, where it is totally worth it to have a real parathyroid expert look into my case. He has called me twice so far to talk about my condition, and he gives all his patients his cell number. He has ordered new labs for me because my endos ordered the wrong calcium tests. I don't have to go through endos anymore, just him, which is a huge relief.
Visit his site www.parathryoid.com if you're interested. I won't go to anyone else.
:) Tamra
She ordered calcium, alk phos, PTH and vitamin D. My previous doctors ordered TSH and FT4. Those were normal. Does that have anything to do with thyroid. I'm completely ignorant when it comes to thyroid because for many months, I've been focused on parathyroid.
Thanks,
T.
Thanks,
T.
Ok another question for you ;-)
How are you being treated by a physician in Florida if you live in Texas? Are you driving there? Thanks for the info!
Danielle
How are you being treated by a physician in Florida if you live in Texas? Are you driving there? Thanks for the info!
Danielle
I sent a message to the Austin lady at my other support group asking her the name of her surgeon in Austin. I'll send you a note when I get the surgeon's name.
Tamra
Tamra
Dani, my mom had a partial thyroid and multi nodule goiter removed about 15 years ago. She's on Syntheroid now. My dad also had thyroid surgery, but he's deceased, and my mom doesn't remember what was wrong with his thyroid. She doesn't even know if she had Graves. She just recalls having a big thyroid and getting it removed.
I am worried that with a family history, I might have, or get, thyroid disease. That's why I"m thinking that if my issues aren't parathyroid, then it must be thyroid, because many of my symptoms are similar to Graves. Also, Graves can cause D levels to drop. My D has been as low as 18.
My endos said they would do thyroid tests, but after reading other posts on this forum, I realize I haven't had a thyroid test because nowhere on my labs did I see thyroid numbers.
:) Tamra
I am worried that with a family history, I might have, or get, thyroid disease. That's why I"m thinking that if my issues aren't parathyroid, then it must be thyroid, because many of my symptoms are similar to Graves. Also, Graves can cause D levels to drop. My D has been as low as 18.
My endos said they would do thyroid tests, but after reading other posts on this forum, I realize I haven't had a thyroid test because nowhere on my labs did I see thyroid numbers.
:) Tamra
My surgeon is Dr. Norman. His website is www.parathyroid.com . He does more parathyroid surgeries than anyone in the US, maybe world. Even though my levels are in the 9s and 10s, he told me on the phone the other night I have a 60-70 percent chance of having the disease, but he wants more labs to be sure. My previous endos did not test my serum calcium.
By next Friday, I should know for certain if I'm going to get the surgery. I will check on the surgeon in Austin and get back to you ASAP.
Tamra
By next Friday, I should know for certain if I'm going to get the surgery. I will check on the surgeon in Austin and get back to you ASAP.
Tamra
Ok I am confused.
Tamra,
Do you have thryoid problems that you know of? I was diagnosed with Hashimoto's in April so I don't kow if my symptoms are all Hashi related or possibly parathyroid. Is it possible to have both?
Tamra,
Do you have thryoid problems that you know of? I was diagnosed with Hashimoto's in April so I don't kow if my symptoms are all Hashi related or possibly parathyroid. Is it possible to have both?
I guess I should have mentioned I no longer have a thyroid. I had a TT done almost 15yrs ago due to goiter/hyper/graves.
My levels for 10yrs was stable at 200mcg of levo, then levels started dropping again, so for last 3yrs at 125mcg. Last TSH level was .67. I have been checked for tissue regrowth, but so far okay.
I personally think it is parathyroid, but no one listens. I don't know if a surgeon would remove them if they can not justify it. My insurance surely would not pay it either. I have had my submandibular gland and two enlarged lymph nodes removed back in 08 due to infection.
Funny, My neice also goes to the same Endo (she had TT), she is going to switch Endo because she keeps telling her that she is being over medicated, but the Endo refuses to lower her dosage because lab work comes back within normal range. I told her to get her primary to lower her dose to see if her symptoms get better.
If you don't mind, who is the surgeon?
My levels for 10yrs was stable at 200mcg of levo, then levels started dropping again, so for last 3yrs at 125mcg. Last TSH level was .67. I have been checked for tissue regrowth, but so far okay.
I personally think it is parathyroid, but no one listens. I don't know if a surgeon would remove them if they can not justify it. My insurance surely would not pay it either. I have had my submandibular gland and two enlarged lymph nodes removed back in 08 due to infection.
Funny, My neice also goes to the same Endo (she had TT), she is going to switch Endo because she keeps telling her that she is being over medicated, but the Endo refuses to lower her dosage because lab work comes back within normal range. I told her to get her primary to lower her dose to see if her symptoms get better.
If you don't mind, who is the surgeon?
Toti and Dani, I would also look into the thyroid. If my next set of calcium tests come back normal, I'm going to have my endo run thyroid tests. My symptoms are very similar to what Graves people suffer. This is gross, but since we're being honest here, I usually have constipation issues (which is a symptom of parathyroid), but it's been the OPPOSITE for the past five days. I don't know what's going on with my body.
Totie I feel your pain. I'm in San Antonio. I've found out the hard way that not many endos in my part of Texas specialize in parathyroid.
I belong to another online group and an Austin parathyroid patient had issues with her endo, but her surgeon overruled the endo and took out the parathyroid. Do you want me to find out the surgeon's name?
Tamra
Totie I feel your pain. I'm in San Antonio. I've found out the hard way that not many endos in my part of Texas specialize in parathyroid.
I belong to another online group and an Austin parathyroid patient had issues with her endo, but her surgeon overruled the endo and took out the parathyroid. Do you want me to find out the surgeon's name?
Tamra
Thanks for the information....
I will look at my lab results from last Aug, this evening. I know twice my Vit D has been low, but they did have me do the Vit D regime the first time, the second time nothing was mentioned, but i knew from the lab result flagging it Low.
I will look into that web sit. I do know my calcium levels have increased, they started at 8.9 and the last time it was 10.2, that is all I know.
I would had gotten the lab done at the endo's office, but she is a 100 miles away, it was easier for me logistically to get them done here.
I go to an Endo in Austin and live in Waco.
I will look at my lab results from last Aug, this evening. I know twice my Vit D has been low, but they did have me do the Vit D regime the first time, the second time nothing was mentioned, but i knew from the lab result flagging it Low.
I will look into that web sit. I do know my calcium levels have increased, they started at 8.9 and the last time it was 10.2, that is all I know.
I would had gotten the lab done at the endo's office, but she is a 100 miles away, it was easier for me logistically to get them done here.
I go to an Endo in Austin and live in Waco.
Read www.parathyroid.com . It says that normal calcium levels vary within .2 points. If your calcium levels are bouncing, it's worth looking into. Also, make sure the doc is getting serum calcium levels. If you're only getting ionized levels tested, your serum levels could be higher than a 9.9. Also, www.parathyroid.com has a great page on vitamin D levels and parathyroid disease.
Best of luck!
:) Tamra
Best of luck!
:) Tamra
Thanks for your post. I know my calcium may only be 9.9 but it's up from 9.3 and my Vitamin D has dropped from 45 to 31. I think I am going to request the PTH test just to be sure, I have all but 2 of the symptoms you posted. Thanks and good luck to you!
To all who have parathyroid symptoms, please read. I apologize for the long post.
First of all, most docs measure ionized calcium, and they NEED to measure serum calcium to get a more accurate measure of parathryoid disease. I just found that out from my surgeon because three endos ( I had to switch because the first two thought nothing was wrong with me) all measured the wrong calcium.
My endos said that a 10.2 is within normal limits. For some people, though, 10.2 is not normal. My ionized calcium levels have ranged from 9.4 to 10.4. My PTH (parathryoid hormone) has ranged from 40-71 (anything over 65 is high). My D has been 18-42. I believe most docs want D to be above 35. Most endos treated the D levels and did not look further into parathyroid disease.
This is wrong.
For patients with parathyroid disease, D levels drop because the body is trying to protect itself from absorbing too much calcium.
Right now, my surgeon is leaning toward my having a small parathryoid tumor, but he's not sure. I'm waiting on one more PTH and calcium test. If you want to learn TONS about parathyroid disease, visit www.parathyroid.com . That's where I get my information. That's how I've gotten this far, by printing out information from the website and educating my new endo. The surgeon who hosts this site, Dr. Norman, is considered by many to be the best parathyroid surgeon in the world. If he confirms that I have the disease, then I'm going to him in Florida.
If your endo doesn't think a calcium of 10.2 is anything to worry about, I'd switch endos and ask for PTH tests, too. Since calcium and PTH varies from normal to high, my surgeon recommended three calcium/PTH tests, weekly for three weeks.
Here are my symptoms. Remember, some people with moderately high calcium can have the worst symptoms.
heartburn/GERD
knee pain
back pain
fatigue and wanting naps
migraines (horrible feeling like my scalp is too small for my skull)
one kidney stone so far
constipation
depression
cranky
muscle pain (especially when D levels are low)
Feeling sick like I've swallowed poison
Chest and neck pain (I'm thinking from the GERD)
Night sweats
Sometimes heart feels like it's beating fast
Ear pain/throbbing
recurring rash on scalp
Best of luck to all of you who suspect parathyroid. I will know for sure in one week. Fingers crossed!
Tamra
First of all, most docs measure ionized calcium, and they NEED to measure serum calcium to get a more accurate measure of parathryoid disease. I just found that out from my surgeon because three endos ( I had to switch because the first two thought nothing was wrong with me) all measured the wrong calcium.
My endos said that a 10.2 is within normal limits. For some people, though, 10.2 is not normal. My ionized calcium levels have ranged from 9.4 to 10.4. My PTH (parathryoid hormone) has ranged from 40-71 (anything over 65 is high). My D has been 18-42. I believe most docs want D to be above 35. Most endos treated the D levels and did not look further into parathyroid disease.
This is wrong.
For patients with parathyroid disease, D levels drop because the body is trying to protect itself from absorbing too much calcium.
Right now, my surgeon is leaning toward my having a small parathryoid tumor, but he's not sure. I'm waiting on one more PTH and calcium test. If you want to learn TONS about parathyroid disease, visit www.parathyroid.com . That's where I get my information. That's how I've gotten this far, by printing out information from the website and educating my new endo. The surgeon who hosts this site, Dr. Norman, is considered by many to be the best parathyroid surgeon in the world. If he confirms that I have the disease, then I'm going to him in Florida.
If your endo doesn't think a calcium of 10.2 is anything to worry about, I'd switch endos and ask for PTH tests, too. Since calcium and PTH varies from normal to high, my surgeon recommended three calcium/PTH tests, weekly for three weeks.
Here are my symptoms. Remember, some people with moderately high calcium can have the worst symptoms.
heartburn/GERD
knee pain
back pain
fatigue and wanting naps
migraines (horrible feeling like my scalp is too small for my skull)
one kidney stone so far
constipation
depression
cranky
muscle pain (especially when D levels are low)
Feeling sick like I've swallowed poison
Chest and neck pain (I'm thinking from the GERD)
Night sweats
Sometimes heart feels like it's beating fast
Ear pain/throbbing
recurring rash on scalp
Best of luck to all of you who suspect parathyroid. I will know for sure in one week. Fingers crossed!
Tamra
I have not had my levels checked in almost a yr. I know I had to do the vit D regime at first, that was almost a yr. ago.
Have not been checked since, until today.
Have not been checked since, until today.
That's why I like to get my labs done at my local hospital. I usually call that afternoon and have them faxed to me at work, lol! What is your vitamin D? I just had mine checked and I have my results but have not heard from my doctor.
Great idea, but unfortunately, her office will not give results until I have seen her and she has gone over them with me first.
I guess no point in trying to diagnosis myself, wait it out.
I have been low on my Vit D as well.
I guess no point in trying to diagnosis myself, wait it out.
I have been low on my Vit D as well.
Unfortunately I don't believe they are allowed to give out the results or even copies. That all has to be obtained by your physician. You could always call your doctor ahead of time and request the results.
I don't see that on the lab order.
I meant to say, that she has not tested me for parathyroid because my Calcium level is within range.
I guess when I go back to see her for the lab results (July 27, I will know more). I went to a diagnostic lab center here to get lab work done because she is 100 miles away. Can the lab center give me my results? Are they allowed to do that?
I meant to say, that she has not tested me for parathyroid because my Calcium level is within range.
I guess when I go back to see her for the lab results (July 27, I will know more). I went to a diagnostic lab center here to get lab work done because she is 100 miles away. Can the lab center give me my results? Are they allowed to do that?
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