Author Topic: Hyperparathyroidism  (Read 3970 times)

debbie

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Re: Hyperparathyroidism
« Reply #15 on: August 12, 2013, 11:00:07 AM »

You are right, my rheumy want's to do a dexa bone scan next and if that is off, he will send me back to the endo and recommend surgery.

Debbie
Ask rheumy if he can put a rush on that scan. I'm just a lay person, but here is what cleveland clinic has to say about hypercalcemia which also references hyperparathyroidism:

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/hypercalcemia/

American Family Physician: http://www.aafp.org/afp/2003/0501/p1959.html

More references:

http://www.nlm.nih.gov/medlineplus/ency/article/000365.htm

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001404/

http://emedicine.medscape.com/article/766373-overview

That should give you sufficient baseline data to advocate for yourself with also.

Thank you, for all the info.

Debbie

IllnDontWantAPill

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Re: Hyperparathyroidism
« Reply #16 on: August 12, 2013, 08:32:11 PM »
Contact Dr. Jim Norman in Tampa FL. With Calcium that high, you're in the danger zone. Around 12.0, you can have a stroke. I have this same condition (hypercalcemia) and know this road all too well. Everyone blows it off. It should never be above 9 when you're an adult. A 15 minute mini parathyroid surgery takes away all your symptoms from that one little adenoma on your parathyroid gland. DEMAND a PTH and Calcium DRAWN AT THE SAME TIME. If you have this disorder and end up seeing Dr. Norman (it would be in your best interest...he's an expert) he'll tell you he wants 3 consistent calcium's and PTH's drawn together. Wonder if there's any connection this SS and parathyroid disorder.

IllnDontWantAPill

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Re: Hyperparathyroidism
« Reply #17 on: August 13, 2013, 04:48:53 AM »
you are a poster child for this disorder. this surgery will CHANGE YOUR LIFE. I'm sure you have GERD, insomnia, agitation, general feeling or feeling like s*** but don't know why per-se, run down, tired, memory fog, depression. ALL OF IT is gone within days. Depression takes the longest to leave at I believe, 8 weeks which isn't nothing to be free of depression! Other patients report symptoms gone when they wake up from the operation. This will RUIN YOUR LIFE! You have everything you need to have in order (high PTH, elevated calcium, symptoms etc) for Dr. Norman to take you on board and get your life back together and get you feeling good. The man is an a**hole (had a phone consultation) and he's cocky but he can be cocky because he knows what he's doing. Check this out: http://parathyroid.com/ and then schedule your appt. Your life will be forever changed. That calcium is nothing to mess around with. Forget about arguing doctors, dexa scans etc, he doesn't want ANY of that. He DX solely by your calcium level and PTH levels. He has a 99% accuracy rate. He says if a doctor send you for a sestamibi scan, don't waste your time. 95% of the time they miss it. He's so confident he brings you in and does the Ses. scan right before surgery, and because he's always right and you have an adenoma, you continue on into surgery. Good luck and read on that website...VERY informative!!

debbie

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Re: Hyperparathyroidism
« Reply #18 on: August 13, 2013, 08:30:07 AM »
you are a poster child for this disorder. this surgery will CHANGE YOUR LIFE. I'm sure you have GERD, insomnia, agitation, general feeling or feeling like s*** but don't know why per-se, run down, tired, memory fog, depression. ALL OF IT is gone within days. Depression takes the longest to leave at I believe, 8 weeks which isn't nothing to be free of depression! Other patients report symptoms gone when they wake up from the operation. This will RUIN YOUR LIFE! You have everything you need to have in order (high PTH, elevated calcium, symptoms etc) for Dr. Norman to take you on board and get your life back together and get you feeling good. The man is an a**hole (had a phone consultation) and he's cocky but he can be cocky because he knows what he's doing. Check this out: http://parathyroid.com/ and then schedule your appt. Your life will be forever changed. That calcium is nothing to mess around with. Forget about arguing doctors, dexa scans etc, he doesn't want ANY of that. He DX solely by your calcium level and PTH levels. He has a 99% accuracy rate. He says if a doctor send you for a sestamibi scan, don't waste your time. 95% of the time they miss it. He's so confident he brings you in and does the Ses. scan right before surgery, and because he's always right and you have an adenoma, you continue on into surgery. Good luck and read on that website...VERY informative!!

I have seen this web site and told my endo about it and he still thinks that we should wait.
The only thing though, I don't want to have to travel to Florida, I live in NY State. I am thinking, any surgeon can do it, right?
Like I said, my Rheumy want's me to have the surgery.

Debbie

Ripvanann

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Re: Hyperparathyroidism
« Reply #19 on: August 13, 2013, 05:55:21 PM »
Dr. Norman is the doc. behind parathyroid.com I.e. the one I said has a lot of info. but don't believe everything you read. I looked into him and called the office. This info is on his site as well. When you are out of state, you pay out of pocket (insurance will NOT cover it) $1500, just for them to get your records! That does not mean they'll take you!

Upon their aproval, you pay to fly there, stay, etc. and then have the 15 min exploratory surgery. Everyone who goes there has this surgery. They sometimes, not all of the time, will remove the tumor then. I did further research and found a lot of botched and hurried surgeries from him. A whole lot saying it's a money making scam.

He's selling the "calcium app pro" to track your calcium but tells you that you most definitely have it if your calcium is high and your PTH is high. No other explanation for it. So why do you need the app then? Truth is, there are a few remote possibilities for hypercalcemia and in some cases, letting it go and doing conservative treatment until the tumor gets too large, is best.

With all of that said, I reiterate what I said before and what others are saying, you need a more aggressive approach. Your numbers are way too high to just watch. You need someone to take ownership of this and do regular calcium and PTH tests.

I don't  know if you can do what I did and just make an appt. with an endo surgeon without a referral,  but if you can, do it. I made the appt. and when they asked for the referring MD. I told them it was my regular endo, even though he was the one sitting on it and teling me to wait! I then messaged my endo and told him that he might be comfortable waiting but I wasn't, so I was seeing a surgeon. He told me that "any responsible surgeon worth their weight in salt, will not operate on you without more evidence."

The endo surgeon (whose wife and mil go to my endo!) said that he didn't want to step on anyone's toes, but that he couldn't disagree more with my endo. With all of that said, he is still checking me for a couple of remote possibilities for the hypercalcemia and doing ultrasounds, etc. Then, he will do surgery.

Yes, there's a link between all AI and hyperparathyroidism and Thyroiditis. Thyroiditis is an AI but no one is sure where hyperparathyroidism comes from. Definitely is familial though. Not that you can't be the first in your family. Ugh.

Take care now. Keep us posted for sure! ~Andrea


Primary SjS, Steroid Induced Cushing's Syndrome, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu. Trileptal, Citracal D & Pain Meds that are fun when not in pain.

debbie

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Re: Hyperparathyroidism
« Reply #20 on: August 14, 2013, 05:25:21 PM »
Debbie,

It's a very long drive to go to FL, especially if you are in upstate NY.

The info in the link that IllNDontWannaPill, is very extensive (I actually looked through it too!) with a lot of good information in it.

Obviously with your rheumy on board with that growth has got to come out, there has to be a surgeon (SKILLED and EXPERIENCED) who can handle that surgery.

I'm thinking it can't hurt to consult, perhaps over the phone, with the FL surgeon. Or perhaps rheumy can on your behalf. Perhaps even the FL surgeon can recommend one in your area with similar expertise.

So those are a few ideas on how the info INDWP (abbreviated) provided in his post can be useful for you.

My inclination, if I were in your situation and further had the means, would lean toward if that surgeon's credentials are as that site put out, I'd sure want that one operating in lieu of a surgeon with little experience.

Well, having the means, is the problem.
I have also read the entire web site, a couple of months ago, but I know, that my insurance will not pay, because it is wayyy out of network. I would think, that we have local surgeons, who are able to do the surgery. I already looked up a endo/ thyroid and neck surgeon, here in the area. After all we live right next to Strong Hospital in Rochester, NY, a very good, well known Hospital.
Since I am experimenting more problems, that are related to the parathyroid, I have decided to go back to the endo, to demand the surgery.

Debbie

debbie

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Re: Hyperparathyroidism
« Reply #21 on: August 14, 2013, 05:40:58 PM »
Dr. Norman is the doc. behind parathyroid.com I.e. the one I said has a lot of info. but don't believe everything you read. I looked into him and called the office. This info is on his site as well. When you are out of state, you pay out of pocket (insurance will NOT cover it) $1500, just for them to get your records! That does not mean they'll take you!

Upon their aproval, you pay to fly there, stay, etc. and then have the 15 min exploratory surgery. Everyone who goes there has this surgery. They sometimes, not all of the time, will remove the tumor then. I did further research and found a lot of botched and hurried surgeries from him. A whole lot saying it's a money making scam.

He's selling the "calcium app pro" to track your calcium but tells you that you most definitely have it if your calcium is high and your PTH is high. No other explanation for it. So why do you need the app then? Truth is, there are a few remote possibilities for hypercalcemia and in some cases, letting it go and doing conservative treatment until the tumor gets too large, is best.

With all of that said, I reiterate what I said before and what others are saying, you need a more aggressive approach. Your numbers are way too high to just watch. You need someone to take ownership of this and do regular calcium and PTH tests.

I don't  know if you can do what I did and just make an appt. with an endo surgeon without a referral,  but if you can, do it. I made the appt. and when they asked for the referring MD. I told them it was my regular endo, even though he was the one sitting on it and teling me to wait! I then messaged my endo and told him that he might be comfortable waiting but I wasn't, so I was seeing a surgeon. He told me that "any responsible surgeon worth their weight in salt, will not operate on you without more evidence."

The endo surgeon (whose wife and mil go to my endo!) said that he didn't want to step on anyone's toes, but that he couldn't disagree more with my endo. With all of that said, he is still checking me for a couple of remote possibilities for the hypercalcemia and doing ultrasounds, etc. Then, he will do surgery.

Yes, there's a link between all AI and hyperparathyroidism and Thyroiditis. Thyroiditis is an AI but no one is sure where hyperparathyroidism comes from. Definitely is familial though. Not that you can't be the first in your family. Ugh.

Take care now. Keep us posted for sure! ~Andrea

Hi Andrea,

I too have my doubts, with this DR. Norman, but it is out of the question for me to travel to Florida for surgery anyway.
I will go back to my endo and talk to him and insist having the surgery.
He wrote this to my rheumy," Mrs. Debbie has Hypercalcemia and Primary Hyperparathyroidism, we have talked about the fact, that surgery IS the only treatment for this condition, but I feel we should wait and see." When my rheumy read that, he shook his head and said, " what in the world is he waiting for?"
You know, one of the symptoms of this is Insomnia, and I have been on Ambien for 12 years.
I will keep you up to date.

Debbie

IllnDontWantAPill

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Re: Hyperparathyroidism
« Reply #22 on: August 14, 2013, 06:52:33 PM »
debbie: ASK YOUR ENDO...if you're going to have ANY kind of hospital stay and how big the incision is going to be. Dr. Norman may be a lot of things but he knows what he's doing. If the endo says you'll be staying overnight, RUN. If he so much as comes close to mentioning a drain in your neck....RUN so fast your shoes fall off. I'm very passionate about this as I have dysphagia and can't eat drink, swallow, talk, sing without a pill. I wouldn't let anyone slice a 5 inch incision across my throat. Make sure he does the mini parathyroid surgery. Its so tedious and they can damage your voice box, larynx, vocal chords, cause you TROUBLE SWALLOWING for the rest of your life. I suffer so bad and don't want to see the same happen to you so PLEASE approach this with caution and make sure they know what they are doing. Good luck with all this!!

debbie

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Re: Hyperparathyroidism
« Reply #23 on: August 15, 2013, 06:07:17 AM »
debbie: ASK YOUR ENDO...if you're going to have ANY kind of hospital stay and how big the incision is going to be. Dr. Norman may be a lot of things but he knows what he's doing. If the endo says you'll be staying overnight, RUN. If he so much as comes close to mentioning a drain in your neck....RUN so fast your shoes fall off. I'm very passionate about this as I have dysphagia and can't eat drink, swallow, talk, sing without a pill. I wouldn't let anyone slice a 5 inch incision across my throat. Make sure he does the mini parathyroid surgery. Its so tedious and they can damage your voice box, larynx, vocal chords, cause you TROUBLE SWALLOWING for the rest of your life. I suffer so bad and don't want to see the same happen to you so PLEASE approach this with caution and make sure they know what they are doing. Good luck with all this!!

Thank you so much for your concern, I will keep all your warnings in mind, when it comes to the surgery.
I am very sorry, that you had to go through all this misery and hope that there will be something the doctor can do for you.
As for staying in the hospital over night, I would prefer it, because I also have Lupus SLE, RA and several other problems, including low platelets.
I had to have a liver biopsy last year and wished they would have kept me over night, because I was so worried, that I was bleeding from my liver, I didn't sleep for two days.
I will keep you all updated on what the endo has to say.

Debbie

powderpuff

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Re: Hyperparathyroidism
« Reply #24 on: August 19, 2013, 09:10:38 PM »
Saw my primary doctor on Saturday and oh boy is she adamant about not having the PTH test.

She says there is no need to have the test if the calcium test performed after it in the ER last week was high normal. This is totally contrary to everything else I have been told on this forum, read online,  as well as several doctors on Healthtap.

Of course, I believe the consensus and will seek to have the test performed anyway.

Powderpuff


debbie

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Re: Hyperparathyroidism
« Reply #25 on: August 20, 2013, 08:05:28 AM »
Saw my primary doctor on Saturday and oh boy is she adamant about not having the PTH test.

She says there is no need to have the test if the calcium test performed after it in the ER last week was high normal. This is totally contrary to everything else I have been told on this forum, read online,  as well as several doctors on Healthtap.

Of course, I believe the consensus and will seek to have the test performed anyway.

Powderpuff

Wow, I don't understand, why she doesn't want the PTH test. My calcium was 10.9,( not extremely high), but my PTH was 240-normal is 14-74. Since this is your primary, I would go see an endocrinologist.

Debbie

powderpuff

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Re: Hyperparathyroidism
« Reply #26 on: August 20, 2013, 04:51:55 PM »
LitliwIowa & Debbie,

She is my primary doctor and I cannot self refer to an Endo. She had no recommendations, or answers as to why my calcium may have been high back in May, just that she didn't see why a PTH was necessary since calcium is within the normal range now. She seemed very exasperated with me. Perhaps having a bad day. She seems severely misinformed. 

I asked 3 HealthTap doctors who said do not wait, run to the nearest Endo for a PTH.  :-\

Ripvanann

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Re: Hyperparathyroidism
« Reply #27 on: August 20, 2013, 06:40:30 PM »
It's truly scary. Why do so many docs seem to be this way? Ignorance always walks hand in hand with pride. Dangerous mix.

Three things: Get a new PCP. In the mean time, can you call your Rheumy for a referral to the endo surgeon? He seemed to be on board with getting this taken care of ASAP. You could also print multiple medical source info on the subject and bring it to your doc. Worst case scenario, she doesn't do anything but get insulted.... nothing new there.

I see my endo surgeon on Thurs. I'll mention you and see what he thinks you should do. Sorry girl! Hang in there! ~Andrea
Primary SjS, Steroid Induced Cushing's Syndrome, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu. Trileptal, Citracal D & Pain Meds that are fun when not in pain.