Author Topic: Hyperparathyroidism  (Read 2229 times)

powderpuff

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Re: Hyperparathyroidism
« Reply #15 on: August 11, 2013, 02:28:20 PM »
Rip and Litli...
Thank you! Did I mention the test was performed in May? My symptoms have gotten unbearable. I will probably have to tick someone off to have further testing done but I sure hope not.

Will keep you posted.
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debbie

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Re: Hyperparathyroidism
« Reply #16 on: August 11, 2013, 06:06:45 PM »

Here is my story.
My rheumy called me after a routine blood test and said to stop my CALCIUM PILLS, because my calcium level was to high. I told him that I don't take any calcium and he told me to see a Endocrinologist. The Endo did another more detailed blood test and the result was, Calcium Level was 10.9- it should never be above 9.0, my PTH ( parathyroid hormone level) was 240- normal is 14-72.
He wrote to my rheumy, saying that I have a Parathyroid Tumor and only surgery would cure this, but he decided to wait and see.
My rheumy was mad, because he thinks that I should have the surgery NOW.
So what am I supposed to do, if the docs can't even agree?

Debbie
Diagnosed with Lupus Sle 2006, RA 2007 and Sjogrens 2012.
meds: MTX shots, Medrol, Mobic, Flexeril, Folic Acid, Vitamin D and Ambien

litliwlowa

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Re: Hyperparathyroidism
« Reply #17 on: August 11, 2013, 08:04:04 PM »

Here is my story.
My rheumy called me after a routine blood test and said to stop my CALCIUM PILLS, because my calcium level was to high. I told him that I don't take any calcium and he told me to see a Endocrinologist. The Endo did another more detailed blood test and the result was, Calcium Level was 10.9- it should never be above 9.0, my PTH ( parathyroid hormone level) was 240- normal is 14-72.
He wrote to my rheumy, saying that I have a Parathyroid Tumor and only surgery would cure this, but he decided to wait and see.
My rheumy was mad, because he thinks that I should have the surgery NOW.
So what am I supposed to do, if the docs can't even agree?

Debbie
Even tho endo is the expert specialty for the endocrine system, with that high a PTH and high calcium (without calcium supplements) is not good. I would ask rheumy to refer you to head & neck surgeon for a consult. I don't know if the parathyroids are visible on scanning, but can't hurt to ask rheumy.

But too high calcium for a prolonged period is anything but good. My endo eeks when my serum calcium gets above 9.2, then drops my calcium supplement according and adjusts my D accordingly. My PTH levels are unreliable. My PTH never goes above 18. So he relies on calcium and D levels.

When is the last time you had a dexa bone scan? I'm thinking that calcium has to be coming from somewhere, and with PTH running that high, wherever that calcium is coming from is likely to continue. You might also want to connect with your PCP on your situation.

My endo has a tendency to take that "wait & see" approach and I have to push back with him on occasion. Thankfully he is receptive when I make my case with him. I got more assertive when my first year post total thyroidectomy he kept me hyPERthyroid with Synthroid dose way too high for several months - intentionally but didn't tell me that part until I pushed back. I was NOT happy about that at all.

It's sure confusing when there is no concensus between specialists on which is the best course of action.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

debbie

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Re: Hyperparathyroidism
« Reply #18 on: August 12, 2013, 05:44:00 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
Diagnosed with Lupus Sle 2006, RA 2007 and Sjogrens 2012.
meds: MTX shots, Medrol, Mobic, Flexeril, Folic Acid, Vitamin D and Ambien

litliwlowa

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Re: Hyperparathyroidism
« Reply #19 on: August 12, 2013, 07:17:37 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.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

Velcro

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Re: Hyperparathyroidism
« Reply #20 on: August 12, 2013, 09:37:59 AM »
Hmmm....my last two blood work results on calcium was 9.6 and 10.0.  The Rheumy didn't bat an eye...
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litliwlowa

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Re: Hyperparathyroidism
« Reply #21 on: August 12, 2013, 10:52:05 AM »
Hmmm....my last two blood work results on calcium was 9.6 and 10.0.  The Rheumy didn't bat an eye...
Well, in my situ endo manages mine and I am a complex subclinical patient with a very complicated medical history. Seriously an anomaly in that respect and he still tries to come up with new theories to explain my endocrine system and he no sooner finds one that fits, something in my levels blows his latest theory out of the water

Velcro, your rheumy might use a lab with different reference ranges. But I would certainly encourage you to ask your rheumy about any concerns you have regarding your levels/labs.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

debbie

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Re: Hyperparathyroidism
« Reply #22 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
Diagnosed with Lupus Sle 2006, RA 2007 and Sjogrens 2012.
meds: MTX shots, Medrol, Mobic, Flexeril, Folic Acid, Vitamin D and Ambien

IllnDontWantAPill

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Re: Hyperparathyroidism
« Reply #23 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.

litliwlowa

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Re: Hyperparathyroidism
« Reply #24 on: August 12, 2013, 09:08:23 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.
thanks for saying what I was hesitant to write - the risk of stroke when hypercalcemic, as well as cardiac problems. Can feasibly turn into a medical emergency very quickly. Especially with high PTH - which basically keeps telling the body it needs more calcium, and of course the body continues to respond with even higher serum calcium levels.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

IllnDontWantAPill

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Re: Hyperparathyroidism
« Reply #25 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 #26 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
Diagnosed with Lupus Sle 2006, RA 2007 and Sjogrens 2012.
meds: MTX shots, Medrol, Mobic, Flexeril, Folic Acid, Vitamin D and Ambien

litliwlowa

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Re: Hyperparathyroidism
« Reply #27 on: August 13, 2013, 01:03:52 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.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

Ripvanann

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Re: Hyperparathyroidism
« Reply #28 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 #29 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
Diagnosed with Lupus Sle 2006, RA 2007 and Sjogrens 2012.
meds: MTX shots, Medrol, Mobic, Flexeril, Folic Acid, Vitamin D and Ambien