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Pt Doctors-HELP (technical and complicated)
Old 09-20-2021, 11:37 PM
  #1

During the past month I have had repeated lab tests.
The initial concern was my fingernails detaching.

Labs ordered 8/19/2021
Vitamin D -sufficient
basic metabolic panel -normal, but alkaline phosphatase was elevated. (142)
Calcium was normal.
(alkaline phosphatase was elevated in March, as well.)

Labs ordered 8/24/2021
basic metabolic panel - low BUN, high alkaline phosphatase (143)
Calcium was normal.
alkaline phosphatase isoenzymes - normal
parathyroid hormone level - elevated (104.4)

Labs ordered 8/31/2021
basic metabolic panel - low BUN, high alkaline phosphatase (138)
Calcium was normal.
parathyroid hormone level - elevated (129.5)

Labs ordered 9/15/2021
phosphorus - normal (4.1)
parathyroid hormone level - normal (62)
comprehensive metabolic panel - normal, except
GFR Non-African American 57 mL/min/1.73
Chronic Kidney Disease: less than 60 ml/min/1.73 sq.m.

Kidney Failure: less than 15 ml/min/1.73 sq.m.
Results valid for patients 18 years and older.


I heard from the Dr. office today. They want to make a referral to a G.I. I had a referral last Spring, and had both scopes and numerous tests for gallbladder issues incl. gallstones. All results were negative. I did agree to return to the G.I. in regard to the high alkaline phosphatase level.
I am concerned and need help with:
PTH can vary widely, but still indicate that you have parathyroidism. Normal calcium levels can occur with parathyroidism, i.e. Normocalcemic primary hyperparathyroidism.
However your kidney function can also be tied to high PTH. And IF I am reading my lab results correctly, my GRF (glomerular filtration rate) is below normal and may indicate chronic kidney disease. (this test must be repeated in 3 months with same result for CKD diagnosis)
Now that my PTH has returned to normal for one test my doctor is no longer the possibility of parathyroidism.
I was told my other labs were fine. I specifically asked the nurse to double check re: GFR and when she called me back I was told the doctor said my labs were fine.
So, where do I go from here? I am frightened about my kidney function, as I was in the hospital with pyelonephritis last Spring. I have a malformation of one kidney and have reflux, which can easily cause UTI's.
I am frightened about the hyperthyroidism possibility because of possible damage to my body.
I know you are all crazy busy with school and your own lives. I am hoping that those of you with some insights and/or experience can talk to me.

Thank you!
Dorothy


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Old 09-21-2021, 01:06 AM
  #2

Iím so sorry youíre going through this. You need to get a second opinion. Take all of your test and lab results to a new doctor. Talk to family and friends and chat online to find someone you think you will be comfortable with. I hope you find some answers soon.
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Old 09-21-2021, 01:10 AM
  #3

SDT
But what type specialist should I see? I am already referred to the G.I., but am wondering if I should ask for a referral to a urologist, a nephrologist, or an endocrinologist.
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Old 09-21-2021, 02:20 AM
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I agree, this is complicated.

-You need an endocrinologist because of the parathyroid issues. That may be at the root of everything else.

-You also need a nephrologist, because if kidney function is compromised, that's a huge issue! and you have several risk factors.

If they too are concerned, they should communicate with one another about these likely related issues.
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Old 09-21-2021, 02:25 AM
  #5

Iím sorry I have no advice.
(((Hugs)))


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lab work
Old 09-21-2021, 03:00 AM
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(((hugs))) Lisa 53 gave you excellent advice as to what doctors to see.

Hopefully you can get this all sorted out.
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Old 09-21-2021, 05:25 AM
  #7

I agree that lisa53 suggested the specialists to see. DS1 has issues with his parathyroid going up and down after his thyroid was removed.

Did you have a hida test for your gallbladder? It shows how well the gallbladder functions. My ultrasound was normal, but thankfully the doctor on call ordered a hida scan, which showed it was not functioning correctly. Iím not sure how much it would be relevant in your situation, but you did mention you have no gallstones.
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what to do
Old 09-21-2021, 05:37 AM
  #8

Instead of seeing one doc at one location, can you get to a larger city and a medical center where you could see a team of doctors. It sounds like you need a diagnostic hospital.
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Old 09-21-2021, 05:50 AM
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I would get to a nephrologist first. Your kidney function can be controlled by diet, watching phosphorus and potassium amounts and medication
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Hida scan
Old 09-21-2021, 06:06 AM
  #10

I did have a Hida scan last year, as well as a CT and both showed no gallstones and normal function of gallbladder. There are no kidney stones.

I don't think we could manage the transportation costs and stress of traveling to a teaching hospital. In the past I utilized The Cleveland Clinic for a different issue and received excellent care. However I was unable to maintain appointments.

Dorothy


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Kidneys
Old 09-21-2021, 06:41 AM
  #11

My mom had chronic kidney failure resulting in dialysis and an eventual kidney transplant. I know nothing regarding lab levels; however

Quote:
You also need a nephrologist, because if kidney function is compromised, that's a huge issue! and you have several risk factors.
I agree with Lisa. If you are concerned at all with you kidney function what harm is there with requesting or scheduling your own consultation appointment with a nephrologist? Just make sure to have all of your medical files/labs/tests forwarded in order for the nephrologist to have the entire picture.
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Old 09-21-2021, 06:54 AM
  #12

I agree with Lisa53's advice . I see an endocrinologist once a year and I remember those times where she expressed concerns about lab results. Watching levels of hormones and calcium in the body is important to protect other organs in the body.
See a nephrologist and a new endocrinologist .
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Old 09-21-2021, 09:57 AM
  #13

I had hyperparathyroidism and had to have one of my parathyroids removed.

I was diagnosed by an endocrinologist and he did the surgery.

After that, I saw a nephrologist to look at my kidneys and my kidney function.

PTH regulates the calcium in your body. When you have hyperparathyroidism, your body produces too much PTH. This makes your body think that it does not have enough calcium. Your body will start to pull calcium from where it can - bones, teeth, etc. This can lead to too much calcium , which in turn can form kidney stones or gravel in your kidneys ( your parathyroid controls calcium secretion in the kidneys).

Excess PTH can cause kidney stones, kidney disease and osteoporosis.

My first symptom was kidney stones. I was also very tired all the time, and had huge memory issues. I would lose my keys while they were in my hand and break down sobbing because I could not find them.

I would definitely seek a second opinion and a referral to an endocrinologist. Your PTH levels and parathyroid issues will need to be fixed (if that is the cause) before your kidneys and kidney function will be back to normal.

I am sorry you have to go through this. It was a tough diagnosis for me and took about 5 years. By the time is was diagnosed I had osteoporosis (at 26) and had to have major kidney surgery because my kidney was 90% blocked by a stone (caused by hyperparathyroidism).

ETA:
Kidney disfunction can lead to higher levels of PTH.

Last edited by choppie70; 09-21-2021 at 10:22 AM..
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Old 09-21-2021, 12:18 PM
  #14

Thank you, everyone!
I had a conversation with my doctor and requested a referral to an endocrinologist. There are a few, and I asked for the office to check and see who can get me in soonest.
He isn't particularly concerned about the GFR because the creatinine was good. I do have labs every three months so will have follow through.
I became very frustrated with my doctor with how this evolved, and I discussed this with him.
I have been his patient for 13 years and place a lot of trust in him. This situation showed me that I need to place the most trust in myself.
You all empowered me!

Dorothy
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