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Hello, I am reaching out to anyone that may provide me with some information. I can provide my tests/scans other info if needed.

I am a 31 year old female, (BC Canada) that has presented with abnormal tests and symptoms for the past few years (March 2015) with no confirmed diagnosis, and I am seeking any help or insight to my situation.

I am concerned I have Primary Hyperparathyroidism (Normocalcemia) with the symptoms I've been presenting the past few years and more and more as time goes by. (I don't think it's Hypoparathyroidism because my calcium levels presented as normal, not low, while my PTH was high, I'm not sure if my symptoms fit it as well as Hyperparathyroidism)

 

I am concerned and feel my Nurse Practitioner is pressuring with "you have to have high calcium so this isn't it" while my PTH showed as 11.3 and my other symptoms (will list below) all point to this diagnosis. I've been getting blood tests done for years and no one has given me answers until this last blood test that showed my PTH elevated. I know that calcium levels change, and I know that regular calcium levels does not mean it's ruled out completely.

 

I am also getting an ultrasound done this week, (Sat Apr 29th) for my kidneys as well.

 

My Symptoms:

First time Kidney stones last week (Apr 20 & 22nd 2017) I've never had stones before

Chronic Fatigue (sometimes extreme)

Chronic Nausea (has lead to weight loss and loss of appetite) but no vomiting

Super low energy

What appears to be GERD that started in the past 1.5-2 years

Constipation

Increased Urination

Sleep doesn't help at all to get rid of any fatigue, pain, etc

Waking up because of pain from either back or arms

Muscle Pain/weakness (unknown causes)

Consistent pain in bones (spine, legs, foot/ankle, arm, clavicle bone and sometimes jaw) - can be extreme

I feel old, if that makes sense, not myself

I get confused really easily

Concentration is like it never existed (I also want to note I have ADHD so concentration is already difficult, but the past two years it's been absolutely getting worse and worse - not at all symptoms like ADHD.)

Friends and family said I changed over the last couple of years pretty dramatically - physically and that I have been abnormally very cranky/bitchy

My ex said I got drastically more cranky/snappy

I feel like there is a constant haze or weird feeling in my head and I have no energy

My back pain up my spine has gotten worse and worse

Mid-back (kidney area) has gotten more painful, uncomfortable

I feel like I'm sick all the time without being sick, and there's apparent cause for all my pain and increasing pain

There is tingling in my left finger tips and left toes (I thought this was associated with a concussion that happened a few months after changes to my personality started happening {Symptoms started March 2015, Concussion April 2015} as well as my body, not sure if this is a related symptom to Hyperparathyroidism)

 

 

Some Past/Current tests/results (can provide more/fuller details if needed):

 

2015, October, Kidney ultra sound: "Four cortical cysts within the left kidney, measuring up to .8 cm in the upper pole. Within the lower pole, is a 0.5 cm cyst which demonstrates small amounts of calcification within it dependently." (Cysts on my kidneys have been normal for me, but calcification is not. No one has looked at my kidneys since this test, but getting one this weekend for an update.)

 

 

2017-04-19 Bone Markers PTH      A 11.3       <7.0 pmol/L      Interpretation of PTH requires simultaneously determined Calcium levels. For further interpretive information, 

I also have tests that consistently show my WBC under 3.0  - Apr 20 2017 2.9, Mar 30 2017 3.0, Mar 24 2017 2.9 Platelet count   144 April 20, 2017, 140 March 30 2017

Ferritin  14 March 24 2017

Tests ordered by NP:

Magnesium

Protein Electrophoresis

Urine Protein Electorphoresis

ECG

Serum Albumin (I requested my NP do this one otherwise it wouldn't be on the list)

 

I am concerned things are getting worse and worse. Are the lab tests that my nurse practitioner requisitioned the correct way to find out if I have some form of hyperparathyroidism? (Secondary, Primary, Normocalcemia, hypercalcemia, etc.)

When should I try another doctor?

What happens if my Serum Albumin comes back as "normal" and my Nurse Practitioner refuses to do another?

If my test results for my ultrasound for my Kidneys come back with stones, how do I re-approach the Hyperparathyroidism diagnosis with my NP? Especially when calcium levels (Albumin) are currently "normal" yet everything else says this is the correct diagnosis regardless of calcium?

Should I start taking Vitamin D more?

Should I avoid calcium heavy drinks/food or have more?

I requested my stuff be sent to an endocrinologist but my nurse practitioner refused and said that elevated PTH can be "any number of causes that isn't Hyperparathyroidism" (to which I have found none according to my symptoms and my research, even looking through medical books and old and new information available on Canadian, US and other Endocrinologist specialist websites, books, studies, opinions, and I asked her what other things could cause it and my Nurse Practitioner had no answer for me) and I'm concerned that they are ignoring my other symptoms. I brought with me information about normocalcemia and such, but my nurse practitioner refused to look at any information I brought in that I found and dismissed it without looking at any information because "it came from the internet" even though I had what was already written in medical books that were just scanned an put on specialist/information websites.

I do not know how to approach this without being pushed away, scoffed at, or brushed off. Does anyone have any suggestions/help to approaching this or ANY other reason my PTH might be elevated?

 

Any help or recommendations would be greatly and gratefully appreciated!

 

Thank you,

Angeline

 ***this post is edited by moderator *** *** web addresses not allowed*** Please read our Terms of Use

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I had two large 6-8 year old parathyroid tumors removed almost five years ago. I basically had to diagnose myself and I lived in Tampa, FL, where they have Norman Parathyroid Center. All the do is take these out. My calcium had been high for five years as far as I could prove with blood work that I myself had kept and several doctors seemed to run tests that they had no idea what the red flags were or the norms should be. I equate 'average' of calcium readings as this: butt is in the oven and head is in the freezer so on 'average' I'm feeling pretty well. The 'average' range for calcium is based on people from their teens to their eighties and the top end of that 'normal average' is way too high for anyone over 35-40. I had to REQUEST my PTH be tested after one smart Nurse Practitioner happened to be alarmed that my calcium was high and ordered a retest. Had that not happened, they would have 'watched' it. Watched it go higher, watched me have more and more symptoms, that eventually would kill me. After having GERD so bad that I ended up with Barrett's Esophagus and on meds and every other year upper GI's for that, after severe bone pain and scary memory loss, crazy heart rates and BP, and racing pulses, hair loss, on and on, I only had to get the app from Norman, turn in my blood work including two PTH results and two calcium readings and I was diagnosed without even being seen. They called me and scheduled surgery and I KNEW already they were correct.
I have asked why doctors miss this and was told that most doctors adhere to the old belief that the surgery for HPTD is risky, has a low success rate and involves ear to ear cutting. The pictures of that kind of surgery is terrifying. And then the disease comes back. This is because if these demons are cut during exploration and removal they break up and multiply in your body, including your chest cavity and you will never, never be free of this disease. You MUST to to a place, which is very rare, that does only this surgery and frequently. Sestamibi scans do not find all of the tumors - they are used just before the surgery but as a diagnostic tool on their own are not very useful. And the tumors hide. Two large ones came out, along with 3/4 of an enlarged third. So I function with 1-1/4 glands and have since 8/2013. But since, my calcium has been below ten consistently. Your symptoms sound classic. I would hope you'd get in touch with Norman. Look up ***this post is edited by moderator *** *** posting of web addresses is not allowed*** Please read our Terms of Use Best of luck to you!

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