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EndocrineWeb Community Advice

Hyperparathyroidism, but "normal" calcium levels?

From: johnathanhebert - 7 years 13 weeks ago

Hi,

After lots of research, my wife and I believe that she has hyperparathyroidism... we have read Dr. Norman's website parathyroid.com and after learning about it, we asked her endocrinologist to measure her PTH and calcium levels... he said he would first measure her calcium and if it is elevated, then he would measure her PTH... but he really did not think that was the problem.

Her calcium came back at 9.4, which I believe is in the "normal" range, but according to Dr. Norman's website, it is possible to have those measurements and still have hyperparathyroidism. Has anyone had hyperparathyroidism, but low calcium levels? She has had 2 kidney stones, which Dr. Norman suggests could be correlated to the fact that the blood calcium levels are normal, since the kidneys are working overtime... does that make sense? Can anyone relate to this situation?

Thanks!

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19 Responses

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I have been having the same results for almost a year. I have elevated pth 88-95 (4 tests over the last year) and in the beginning had very low vit. D. My doctor referred me to an Endo. and she put me on high does of vit. D (Oct. 2009). The last 3 blood tests have showed normal range of vit. D and calcium and still high pth. Endo. is still saying that vit. D is cause, yet I'm in normal range and she wants me to stay on same dose (2000iu daily). I am very frustrated and too damn tired to be much of an advocate for myself.
I feel your pain.

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Yes, I can relate. Fortunately, my urologist obtained the initial PTH for me and it was significantly elevated (more than double the high end of "normal", although my serum calcium was only 9.3. In addition to twin huge kidney stones earlier this year, my urine calcium levels were significantly elevated even during a repeat after making dietary changes. Endo confirmed the high PTH and 9.3 calcium again. Dr. Norman indicated that a little more than 2% of his patients had lab results like mine, and all had parathyroid tumors--I fall into the "confusion area B" part of his advanced diagnosis page on his website, and the kidney stones with high urinary calcium levels confirm the diagnosis for him. I will likely follow up with him, but I will probably wait for a couple of weeks to see one more calcium level and PTH level, and a bone density test result.

She REALLY needs the PTH numbers. Most doctors dismiss the possibility of primary hyperparathyroid disease if the calcium levels fall anywhere in the "normal" range. Dr. Norman seems to shoot straight, and if he isn't pretty sure that you have an adenoma (tumor), he will tell you.

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Kirstencarrie,

Take a close look at the advanced diagnosis page on Dr. Norman's website and compare the graphs with your results. If you still have questions, email Dr. Norman with your results. He posts a link to his email address on his website and he does answer his email.

My PTH was significantly higher than yours, I also had two 24 hour urine tests with significantly elevated calcium levels, and I had two huge kidney stones. That could give me a different response than you receive.

Good look!

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I can relate. I had normal Calcium levels for 8 years, around 10 so it never alarmed my Dr. I grew very ill, no kidney stones. I went for a rountine Dexascan with severe osteoporosis found. The Dr. thinks I had the condition for 8 years before surgery. I feel like a new person now that the tumor was removed. I did have a scan that showed the turmor.

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good luck I wish everyone with a adenoma could know how good they will feel after surgery. I will never understand why it took 8 years for it to be found by me and my doctor. I am a nurse so I kind of tuffed it out and doctored myself alot. That was not a good idea.

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First of all, I would like to appreciate the choice of theme that you have chosen for your blog, it looks perfectly wonderful. Now,coming on today's post I must say that you have explained thesubject in a concise manner that makes it easily understandable.
Thanks for this information.

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I'm new at posting on accounts like this and don't know if this one is active or not but I read this thread and am wondering where people are at now with this problem. I am very concerned. My calcium level is normal (9.4) but my PTH is anywhere from 150 to 210 and has been for over a year now. I had gastric bypass 8 years ago and my endo doc believes I am not absorbing calcium. I take 50,000 (yes, 50,000) units of Vit D daily and 2500 mg of calcium daily. I break the calcium up to 500 mg doses 5 times a day. My endo doc says my calcium level is normal because my body is sucking calcium from my bones to make it normal. I am recently diagnosed as having osteoporosis. I cannot take bone building meds due to such high PTH. I am very scared. Does anyone have any suggestions or help?

Donna M

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Hi Donna,

I have recently been diagnosed with hyperparathyroidism. My calcium is at 10.6 and my PTH is 100. I am still going through the process but am likely going to undergo surgery.

Can I ask what your doctor is suggesting? Do you have any symptoms beyond the bone density issue?

James

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I'm wondering what your surgery is for. Did they discover a tumor? My doc said that is a common reason for hyperparathyroidism but I do not have a tumor and he believes it is due malabsorption. He thinks it is because I am not absorbing Vitamin D. He recently upped me again. I now alternate between 50,000 units and 100,000 units of Vit D every other day. These are toxic levels and I'm afraid they are still not working. I do believe it is creating another very serious problem. I have heart valve disease and in the past year it has rapidly progressed to a point we are discussing transplanting two valves. Just two years ago, my cardiologist thought that may be what I might need to do in about 10 years. After last year he thinks it may be necessary next year. My high PTH and the rapid progression of heart problems are occurring at same time. I've been dealing with them separately but now am thinking they are related. I've read where Vit D deficiency can increase heart problems. I'm making appts with both cardiologist and endocrinologist next week and ask them about this. If they don't agree or I still can't get my PTH to normal levels, I am going out of state to renowned medical center to see if they can help me. (I live in Alaska and we have good doctors here but so far no one can get this under control). Do you check your Vit D level? I'm discovering just how important it is.

Donna M

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I've has kidney stones for over 25 years, well over 30 incidents. About a year ago I began experiencing pain in my fingers and toes and severe muscle cramping at night. I requested my uorologist to perform a kidney function test. I've also had gastric bypass sugery 13 years ago. When the pth was first measured 9 months ago it was 118 and Ca normal. My urologist wasn't concerned from his perspective because calcium was normal but suggested I see my primary care physician about pth. Pth wAs checked again 2 monha ago it was 148, ca still normal (mid 9s). My vit D was low (19). My dr prescribed d2 50k 1/week and referred me to a endocrinologist. I saw my gastix bypass surgeon who switched me to D3 1000 mg per day because he said my ability to absorb d2 was not likely because of the surgery. Lab results from 2 weeks ago show increased d levels (29) but also increased pth (228!). Endocrinologist wants to do surgery and dismisses the possibility that this could be related to true calcium deficiency. I am conflicted a bit. It's possible that I've had an adenoma since I was 18 or prior - but it's also possible I have a true calcium deficiency and surgery would put me at risk of hypocalcemia. Anyone had similar questions/advice?

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I have just learned that my PTH test is 79 even though my calcium level is 9.0. I had a partial gastrectomy 55 years ago at age 17, a vegotomy 27 years ago and a revision to a roux-en-y 3 1/2 years ago. I do not absorb iron or B12 and I assume there are other vitamins/minerals I do not absorb too. I have been taking 20,000 units of D3 for about a year as well as 1500 mg of calcium every day. I just raised my calcium to I do have bone density's done and my spine has osteoporosis while my hips have improved from osteoporosis to osteopenia. The bone density was done almost 3 years ago.
Two years ago my pth was 53, a year ago it was 14 and now it is 79. Does this sound like a tumor or malabsorption due to the surgeries? Would appreciate any reply.
Thanks, Jenny

Jenny

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Is anyone on this site as of late?
Just got my b/w back. PTH is 260 and Calcium is 9.4.
I have osteoporosis for several years. I cannot understand why my Calcium is at normal range? HELP

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My PTH is 269, my calcium is 9.2, Vitamin D is 33.. Calcium and vitamin D in normal range, but my Endo wants to increase my calcium intake. I had gastric bypass in 2007 and am Type 1 diabetic. Is calcium the best option? Should I have test done for parathyroid adenoma?

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I'm waiting on my ENT surgeon after finding out today from my new endocrinologist that my PTH is now at 355 value and calcium is 9.3 within the proverbial calcium "normal range ". Never had my PTH quite so high, it's basically 300% above the normal range. I've had 2 or more adenoma dgx on my parathyroid for over 3 years, high pth for nearly 10 years. Calcium has been as high as 11.5 level. I'm going to Google it out because I'm just as puzzled. I've been super tired and have difficulty swallowing too. I'll keep in touch. Hang in there :)

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@Kariann2298

Good luck to you! I'm about 1.5 years past my parathyroidectomy. It looks some time but I feel great now. Just keep researching and doing what's best for you. You're being proactive with your health which is half the battle!

James

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High PTH
High creatinine
Normal calcium
Protein is ++ in urine analysis

Any explanation ?

Thanks a lot

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Look up normocalcemic primary hyperparathyroidism. Remember that any state of disease has a norm and also that every illness has a bell curve when it comes to reference ranges.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/

Also look into supplementing with Boron, Magnesium, Calcium and possibly Vitamin D.

Be careful with both calcium and vit d tho. Chances are your body won't respond to high levels of either of them since it will continue to push up your serum calcium levels. Pace yourself and note any worsening of symptoms especially heart palpitations, muscle pain/weakness and also any other classic hyperparathyroidism symptoms.

Remember to always work with your physician or naturopath, let them know if you run into any worsening of symptoms.

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I have CKD since 1993 (prior very fit and healthy) within a few years it developed into chronic fatigue but otherwise OK apart from resultant high BP. I am losing about 6pts kidney function a year, currently eGFR is 18 (uk figure)

Current calcium results etc - calcium 2.33mmol/L. parathyroid hormone 9.5pmol/L, (current normal range for UK is 1.6-6.9pmol/L - a few years back it was ng/L 15-65) in 2011 it was 108, calcium 2.34, Vitamin D 32 - 2012 june, 66.92, calcium 2.44 - I guess tests changed in 2012 because 6mths later the new test figures are much lower 2012 dec , 13.80, calcium 2.22 - 2013 dec, 11.40 - 2014 may 16.40, calcium 2.33 -

So it looks like my calcium has always been in *normal* range even today, but parathyroid elevated since 2011. I saw an endo in 2011 and all was well he said in this department. In 2013 had a Spirometry barrage of tests on lung function and all was perfect. 108% initially and after asthma inhaler 115% so not asthma related. My lung capacity age was 37 ( I was 55) (had a COPD function done before in 2010 and was age of 36 equiv) My breathing was always very quiet and slow and relaxed.
A while later I developed an inexplicable shortness of breath, and developed some anxiety issues. Still undiagnosed today, despite repeat chest xrays etc showing all clear. Vitamin D levels have been consistently low since then too. My pulse also started dropping to around 50, was always 60+ normal range. I have been complaining of muscle weakness since this time also, they sort of burn out very quickly. I can still level heavy things quickly if needs must, but had to stop my dumb bells exercises as it was too uncomfortable. Generally lifting my arms from my sides upwards is very energy consuming. I walk daily about 30mins and no leg problems or weakness, just my arms it seems, but I mean really tired. Last 8 mths or so had regular palpitations, which lasted about 6mths, but have now pretty much stopped again.

As CKD develops, you then get cardiovascular issues which I now have. Despite shortness of breath etc are related to CKD, no one seems to know why in my case. The NHS has been remarkably unwilling to do anything about anything unless prompted hard. No doubt when the kidneys finally fail the *system* will kick in, but till then we're pretty much on our own. I have a renal consultant and now a cardiologist, and of course a doctor. None of which wish to stray out of their field, and present any joined up thinking so my thyroid type issues remain undiagnosed.
I should also add at this time I started to get distinct chills all down my arms, especially whenever I started to use the dumbbells, but also when putting jumpers on etc. The cold generally affects me also these days. I always need a thermal vest on and a snood around my neck or at least most of the year apart from high summer days.

Any thoughts on the above?

TIA

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You sound like me. My PTH is 290 but my calcium is normal. I have osteoporosis. My doc says the PTH job is to be sure my calcium level is normal. It's working overtime hence the high level. It's literally sucking calcium from my bones so that my body has the calcium it needs. I'm on 50,000 iu per day of Vit D because I don't absorb it due to weight loss surgery. I also take 2000 mg of calcium per day. There isn't anything else I can do to my knowledge.

Donna M

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