Parathyroid elevated PTH was 110- anyone know anything about this?

[sorrel32]

Hi everyone!

I'm 59... was dx last year at 58 with Osteoporosis.

I was dx with osteoporosis last Sept.

Hip: T value -2.3

femoral neck T value -2.7

lumbar spine T value -2.8

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I just had my vitamin D and magnesium and PTH , calcium intact tested... waiting for more results. All was normal except low D (20) ... and PTH elevated 110.

normal magnesium, calcium, phosphorus...

seeing GP on Wed. He wants to put me on script D... to bring my D up and hopefully bring down PTH, but I am concerned that I may have an overactive PTH and want to get an ultrasound .

Have a feeling the overactive PTH could be responsible for the osteoporosis.

Why does it take forever to get an appointment with an endocrinologist.

I swear it didn't take this long back in the day!!

would love any feedback. kind of freaked out. it's only a fluke that he did the PTH.

Thank you all in advance!!

[Capan24]

it is possible to have normal calcium levels while having elevated parathyroid hormone (PTH) levels, a condition known as "normocalcemic primary hyperparathyroidism." This occurs when the parathyroid glands are overactive, but the body manages to maintain normal calcium levels despite the increased PTH. I had primary hyperparathyroidism in 2014 with the removal of of 2 parathyroid glands due to adenomas. My calcium, PTH labs where elevated and my vitamin D was on the lower side of normal. I went to the Norman Parathyroid Center in Tampa Florida to have my surgery. They have a website with a lot of useful information on hyperparathyroidism. Before seeking treatment in florida, I went to the University of Michigan and they just wanted to take the watch and wait approach by getting more additional labs in the future. Meanwhile, I was having symptoms like extreme fatigue and brain fog. My primary care doctor have you heard one other person to the Norman parathyroid center before it was good results. Apparently people fly from all over the country to this specialty clinic. They do initial appointments by phone and video visit prior to you going down there. I think their site is a good place to get any more useful information. If there is a possibility that you could have hyperparathyroidism, I would not wait. I'm not saying you have to fly down to Florida like I did, but if you do have hyperparathyroidism it is only going to get worse and destroy your bones.

[Southerngirl2787]

When my PTH hit 100 I was miserable. My calcium had bounced from 9,8-10.3, seemingly "normal" but it wasn't. I had a parathyroid tumor, and found out the lab values are wrong, they include children, who can have a higher calcium than adults. Over age 35, 10.0 is the highest we can go without getting labs done and see a doctor. Some of the OP drugs can drive calcium up as well, the Tymlos has mine up to 10.0, 10.1 from time to time, I do not take calcium supplements anymore, just monitor levels. My PTH got as high as 130 before surgery at the Norman Parathyroid Center in Tampa. Great place. My internal PTH was 600 at the time of surgery. Unfortunately, I had it way too long, with doctors who refused to address the fatigue, brain fog, memory issues....called it stress. So I ran my own labs, tracked them, saw the patterns and made an appt with Tampa doctors. I had severe OP, and the doctors didn't even bother to try to understand why. I've now had 10+ spinal fractures, 5 fusions, 6 decompressions, nerve transfer surgery on legs, nerve repair on hands/wrists, and four more discs that are nearly gone, bone on bone right now. Please get this checked. Norman Parathyroid has a great website, lots of lessons.

[Grandk23sc]

Hi

I had and elevated PTH and had a parathyroid tumor which was removed and found to be the cause of my osteoporosis. I have been on Prolia for @ 10 years-no fractures and only side effects have been joint pain and elevated cholesterol. I have had improvement since the prolia and continue without fractures! It's makes it difficult when you cant get in to see someone. I was fortunate that once they saw the PTH and bone scan results -I had surgery right away. ( Iw as taking D, magnesium and calcium prior to the surgery)

Hope you get some answers!

[sorrel32]

Thank you, everyone for the valuable insights and info. I see my GP today and the NP at the endocrinologist on Friday... so hopefully more answers. My GP is convinced that the low D caused the PTH to elevate, but I want to make sure there is nothing else before OP gets worse. It's funny bc I don't feel sick... my energy level is normal. I've been walking a mile each day (want to do more but am dealing withgluteal hip tendonosis) , do PT twice a week and each day at home, and have started kayaking again along with a new summer job. Not sure why the elevated PTH is not affecting me mentally or physically, but I of course want to make sure it's not coming from the parathyroid gland adenoma... Capan- thank you for your insight and great info. Hope you're doing well. Southern girl- I'm so sorry that you've had so many problems and surgeries- praying that you're okay and will find some relief soon. Grand- I'm glad you're doing well on the Prolia and you found the cause of your OP and were able to have surgery right away. I'll keep you all posted after my doctor appointments. Hugs to all!

[sorrel32]

btw... my PTH -110 Calcium 9,3 Vitamin D 30

and

VITAMIN D, 25-OH, D2

<4ng/ml

___________

GP says that the VITAMIN D, 25-OH, D2

<4 is low bc of many months of low D3 (was 20...) and PTH is high bc of many months of insufficient D.

I shall see what the NP at the endocrinologist says.

[YogurtMaker]

Let us know what the endocrinologist said. Check out parathyroid.com/hyperparathyroidism-diagnosis.htm. (This is the Norman center that someone else mentioned). It basically says your pth is unlikely to be that high due to vit d deficiency. What is Moe likely is that you are converting more vit D2 to vit d3 (the active form). Is your pth consistently this high?