High blood calcium, low normal pth, very low vitamin d, negative sestamibi scan

by martha

I have had high blood calcium, anywhere from 10.2 to 10.8, for the last 4 years. My pth is low normal at 22. My vitamin D is very low, at 19. I'm very fatigued, muscle and joint pain, especially hips, sleep poorly, have aweful brain fog and memory issues. My sestamibi scan was negative for any parathyroid adenomas, or anything abnormal with my parathyroids.

I had a total thyroidectomy about 8 months ago. My endo has just started me on 50,000 vitamin d, once a week, for 6 weeks. I have taken two weeks worth, and don't feel any different, except I'm pooping alot more!! Won't taking more vitamin d raise my calcium? I'm lactose intolerant, and probably don't get enough calcium in my diet. I was told years ago to stop my calcium supplement because of my high calcium reading.

Comments for High blood calcium, low normal pth, very low vitamin d, negative sestamibi scan

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Yes, Vitamin D Will Probably Make Your Calcium Worse.
by: Kerri Knox, RN

Yes, Vitamin D will probably make your calcium levels worse. And Setsimbi scans are only about 50% accurate. Please read the SAME resource that I refer EVERYONE to that has a high calcium level on the over 100 pages on my site that discuss high calcium levels, which is why I ask people to search my site before asking a question, and to read ALL of the resource that I have given.

It is Parathyroid.com and that link goes to their discussion of Setsimbi scans. You almost certainly have hyperparathyroidism and need to see a parathyroid surgeon. Here is the pertinent part of that page, read through the ENTIRE website. It is short,but thorough and will probably take you less than an hour to read EVERYTHING.

"Sestamibi scans have no role in determining if somebody has a parathyroid tumor. ...Sestamibi scans are NOT diagnostic scans and should never be used to determine if a parathyroid tumor is present (we know a parathyroid tumor is present by the lab values of blood calcium and PTH). When an endocrinologist orders a sestamibi scan, it delays that patient going to the operating room by an average of 2.8 years!"

Did you read that? These parathyroid specialists say that Setsimbi scans have NO ROLE IN DETERMINING IF SOMEONE HAS A PARATHYROID TUMOR. I am not big on drugs and surgery. I think everyone should avoid them whenever possible. But in the case of parathyroid tumors, I have looked thoroughly and have not been able to find a research-backed solution that will shrink parathyroid tumors. High calcium is a MEDICAL problem that you should find the appropriate parathyroid specialist to deal with and, most likely, have surgery to remove.

Kerri Knox, RN

unique labs
by: Martha

Thank you for responding. I have read through your site. I have read through the parathyroid.com site. I have been online, looking at many, many sites, and have not found a single instance of anyone else whose problem looks like mine. with the same kind of labs as mine. My calcium is high, but my pth is not elevated. it is low, normal. My vitamin d is very low. My phosphorus is normal. My albumin is normal. the only other lab test that I have had that is outside of the normal range is a slightly elevated chloride and an elevated rdwsd. My renal profile is normal. I have never had kidney stones, but have had gallstones, and my gallbladder removed. I have a new endo that took 3 months to get in to see, who won't see me again for another 4 months, and may or may not know what to do with me.

According the parathyroid.com, everyone who has an elevated calcium level has hyperparathyroidism, and no other doctor in the free world really knows what they are doing. No one knows how to do a scan, run a test or diagnose anyone except them. I am ill, and am just looking for information.Thank you for listening to me. I'll keep looking.

high calcium/ low PTH
by: Pat

Hi Martha, I too am looking for answers My calcium levels are always on the high normal at 10.0 but my latest lab results show an increase to 10.5. My PTH results were 16 and my Vitamin D was 19!

I'm tired all the time and (for several years now)and now 'm experiencing aches all over. I work out 4 times a week for 30 min. down from my 6 X's a week for 50 min. I don't drink or smoke or drink soda yet I feel sick! My Dr. has me on 10,000 units of vitamin D for 2 months then a reduction to 5,000 a day.

I worried about taking the extra vitamin D wit the high calcium. If anyone has answers, I'd love to her from you.

Apps and Labs next week
by: Martha

My 4 month follow up with my endo is next week. After the first 8 weeks on 50,000 I of vitamin d, my calcium went up to 10.9. My vital do did go up to 44. I unfortunately also have no thyroid and am struggling with getting my thyroid hormone dose and levels right, and am feeling hypo with a low free t3, so my symptoms are overlapping. I don't know what she's going to do next week, except hopefully change my thyroid meds to a different type. Anxious to see what my labs are. I am soon tired!

High calcium/low D/ normal PTH
by: Kim

My calcium was 11.1 pth 39.5 vitamin D 27. My doctor said I do not have hyperparathyroid since my PTH is normal.

Over the past 2 years my calcium has been 10.2-10.8 vitamin D was 15. I took vitamin D which raised it to 32 then went to 27 now on d again for the high calcium.

I ache feel horrible foggy memory but Doc still still no parathyroid. After reading parathyroid.com I believe I have it,but I don't know what to do I go back in 3 months for more labs. Anyone have any advice?

Get a new doctor
by: Kerri Knox, RN

I'd suggest getting a new doctor, preferably one that specializes in parathyroid tumors, as your current doctor is almost certainly incorrect.

And if he has you on Vitamin D to reduce your calcium levels, he's endangering you as well, since Vitamin D does not reduce calcium levels.

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System
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PS: If you appreciate the free help that I give on my site, please consider making your next supplement purchase through my Health Store in order to help keep this site in operation.

High calcium/ low vitamin D/ normal PTH
by: Kim

I meant to say in my last post the Doctor put me on 50,000 units of vitamin D since my level was 27 once a month for four months even though my calcium was 11.1.

The way my husband and I understood her that low D can cause high calcium and once the D is corrected the calcium will go down. I took the vitamin D 5 days ago she rechecked my calcium after taking the vitamin D for 3 days it had gone down from 11.1 to 10.1 so I am totally confused.

I don't know what to expect now. Since my PTH was 39.9 and calcium went down to 10.1 could I still have hyperparathyroid? She says there is no way I have it. I am really scared!!!!!!

My Calcium runs between 10.2 and 11.2, Low Vitamin D ranging from 10-30 and PTH at 16.
by: T&H Forever

So I am one of those people that traveled down to Tampa General Hospital to the Norman Parathyroid Clinic, they said that I had a clear scan but I must have a Parathyroid tumor anyway. They went in and took out one of my parathyroids out and said that I had a tumor on it and that my Calcium levels were now super duper low because it would take my body possibly weeks to adjust my calcium levels and how bad I would feel if I didn't take the very high doses of calcium supplement. Well my doctor back home was very skeptical and asked me to hold off on taking high levels of Calcium until she could take my Calcium and parathyroid levels herself once I returned home, nothing had changed. My calcium levels were not bottomed out as they claimed in Tampa. I still had high calcium and I didn't take any calcium supplements, they simply lied. I still have high Calcium, low Vitamin D and a low Parathyroid hormone level so I spent thousands of dollars for nothing and I seem to be no better off and nobody seems worried even though I'm symptomatic. Flying out to Tampa and spending all that money didn't help me one bit.

Follow up with the clinic.
by: Kerri Knox, RN

Follow up with the clinic.

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