My Doctor refuses parathyroid hormone testing.

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Systemlord

Systemlord

Member
I'm unable to find parathyroid hormone testing on discount labs. When I eat anything with calcium, my heart beats erratically, muscle spasm, nausea high feeling, weakness, bone pain and excessive urination, the more calcium content in the food, the worse and longer the symptoms.

I had been eating the same food breakfast lunch and dinner for eight months now. I allowed my vitamin D to drop to 26 to see if I could handle calcium again. I can't.

I understand in low vitamin D, parathyroid hormone increases.

Thanks
 
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J

JmarkH

Well-Known Member
Systemlord said:
I had been eating the same food breakfast lunch and dinner for eight months now. I allowed my vitamin D to drop to 26 to see if I could handle calcium again. I can't.
Click to expand...
I switched from D3 to supplementing with D2 because of calcium interactions in the blood. I'll try to find the research again tomorrow.
 
T

tareload

Guest
Have you considered an outpatient CBT program or at least starting to find some tools and strategies to help?


Good resource in my experience:
Unified Protocol for Transdiagnostic Treatment of Emotional Disorders: Therapist Guide (Treatments That Work) Amazon.com: Unified Protocol for Transdiagnostic Treatment of Emotional Disorders: Therapist Guide (Treatments That Work): 9780190685973: Barlow, David H., Farchione, Todd J., Sauer-Zavala, Shannon, Murray Latin, Heather, Ellard, Kristen K., Bullis, Jacqueline R., Bentley, Kate H., Boettcher, Hannah T., Cassiello-Robbins, Clair: Books


1676378624486.png


Unified Protocol for Transdiagnostic Treatment of Emotional Disorders: Workbook (Treatments That Work) Amazon.com: Unified Protocol for Transdiagnostic Treatment of Emotional Disorders: Workbook (Treatments That Work): 9780190686017: Barlow, David H., Farchione, Todd J., Sauer-Zavala, Shannon, Murray Latin, Heather, Ellard, Kristen K., Bullis, Jacqueline R., Bentley, Kate H., Boettcher, Hannah T., Cassiello-Robbins, Clair: Books

Good to have a trained facilitator who can guide you through some of the techniques. Best wishes on getting this addressed. It is challenging.
 
Systemlord

Systemlord

Member
Gladiator said:
My doctor refused E2 testing so I changed doctors.
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It's Kaiser, not the doctors that are restrictive in testing. It's a common problem. He said there's no indication to test for parathyroid hormone, that low vitamin D can raise it.

If calcium isn't high, he said he can't do anything. I even provided high with an explanation for normal calcium.

www.uclahealth.org

High Calcium Levels & Primary Hyperparathyroidism

Primary hyperparathyroidism is the most common cause of high blood calcium level in the general population. Primary hyperparathyroidism is when your parathyroid glands make excessive amounts of parathyroid hormone (PTH).
www.uclahealth.org www.uclahealth.org

What if I have elevated parathyroid hormone (PTH) but normal calcium?​

Normal calcium levels despite high blood levels of parathyroid hormone could be a result of:

  • Vitamin D deficiency
  • Very low amounts of dietary calcium over a long period of time
Click to expand...

He seemed perfectly ok with me not being able to eat veggies and normal food to further improve my diabetes. It's unreasonable to expect me to eat pita bread and meat for life!

Doctors response->
I'm sorry you are frustrated, but I do think you may be trying to associate too many things here again. We have done this before. I am not aware of any association with calcium and what you are describing.

I have no indication to check a parathyroid hormone level here. In fact we shouldn't check it unless your vitamin D levels are normal as vitamin D deficiency is a normal cause of PTH/parathyroid hormone release as you have shown. Your calcium levels are otherwise normal.

Personally just try to get your vitamin D in place. Vitamin D is what your body help absorb calcium normally. You don't need to otherwise add calcium into your diet. Many sources of calcium come from milk products. Some patients cannot tolerate dairy, however due to lactose intolerance.
Click to expand...
I never said anything about drinking milk, or dairy, I was talking about all foods with calcium.
 
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T

tareload

Guest
www.aafp.org

Parathyroid Disorders

Disorders of the parathyroid glands most commonly present with abnormalities of serum calcium. Patients with primary hyperparathyroidism, the most common cause of hypercalcemia in outpatients, are often asymptomatic or may have bone disease, nephrolithiasis, or neuromuscular symptoms. Patients...
www.aafp.org www.aafp.org

What makes you think you need to follow up with PTH testing? Post your latest CMP.
 
Systemlord

Systemlord

Member
readalot said:
What makes you think you need to follow up with PTH testing? Post your latest CMP.
Click to expand...
All I know is these symptoms started after normalizing my vitamin D levels. I learned that vitamin D helps absorb calcium, putting two and two together, cut calcium completely out of my diet and these symptoms mostly disappeared.

I then allowed my vitamin D to decline from 64 ->26 and tried eating small pieces of carrots, and symptoms returned immediately for more than a day. When my vitamin D was 64, I was having extreme pain in teeth, which were whiter than normal and very painful!

The headaches were brutal and all other symptoms weakness, bone pain, excessive urination, nausea etc. Eating something with 2% calcium and symptoms only last a few hours, eating high percentage of calcium in food (hamburger, which is good for diabetes) and symptoms last for days.
 
Last edited:
Systemlord

Systemlord

Member
readalot said:
Post your latest CMP.
Click to expand...

CHOLESTEROL

242 mg/dL

<=199 mg/dL

TRIGLYCERIDE

207 mg/dL

<=149 mg/dL

Note that if triglycerides (TG) are sufficiently high, then direct LDL (if
TG>1300 mg/dL) or HDL (if TG>2000 mg/dL) measurements may not be valid.

  

HDL

36 mg/dL

>=40 mg/dL

LDL CALCULATED

167 mg/dL

<=99 mg/dL

CHOLESTEROL/HIGH DENSITY LIPOPROTEIN

6.7

<=3.9

See LabNet for more information.

  

CHOLESTEROL, NON-HDL

  

SODIUM

143 mEq/L

135 - 145 mEq/L

POTASSIUM

4.1 mEq/L

3.5 - 5.0 mEq/L

CHLORIDE

104 mEq/L

101 - 111 mEq/L

CO2

28 mEq/L

21 - 31 mEq/L


ALT

19 U/L

<=63 U/L

ALKALINE PHOSPHATASE

60 U/L

<=125 U/L

BILIRUBIN, TOTAL

1.9 mg/dL

<=1.0 mg/dL



The elevated bilirubin is the result of Gilbert's Syndrome.
 
T

tareload

Guest
Systemlord said:

CHOLESTEROL

242 mg/dL

<=199 mg/dL

TRIGLYCERIDE

207 mg/dL

<=149 mg/dL

Note that if triglycerides (TG) are sufficiently high, then direct LDL (if
TG>1300 mg/dL) or HDL (if TG>2000 mg/dL) measurements may not be valid.

  

HDL

36 mg/dL

>=40 mg/dL

LDL CALCULATED

167 mg/dL

<=99 mg/dL

CHOLESTEROL/HIGH DENSITY LIPOPROTEIN

6.7

<=3.9

See LabNet for more information.

  

CHOLESTEROL, NON-HDL

  

SODIUM

143 mEq/L

135 - 145 mEq/L

POTASSIUM

4.1 mEq/L

3.5 - 5.0 mEq/L

CHLORIDE

104 mEq/L

101 - 111 mEq/L

CO2

28 mEq/L

21 - 31 mEq/L


ALT

19 U/L

<=63 U/L

ALKALINE PHOSPHATASE

60 U/L

<=125 U/L

BILIRUBIN, TOTAL

1.9 mg/dL

<=1.0 mg/dL


The elevated bilirubin is the result of Gilbert's Syndrome.
Click to expand...


1676392912231.png
 
Systemlord

Systemlord

Member
readalot said:
Blood calcium level?
Click to expand...
Calcium = 9.1, when vitamin D is deficient and 9.2-10.3 with normal vitamin D. I also forgot to mention, every morning I take 600 IU D3, both my glands under my chin swell up and hurt and the chronic cough I had for 20+ years previously comes back.

My endo even commented on my bodies ability to retain calcium even with vitamin D deficiency.

At 400 IU D3, the cough is much reduced to non-existent.
 
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T

tareload

Guest
Systemlord said:
Calcium = 9.1, when vitamin D is deficient and 9.2-10.3 with normal vitamin D. I also forgot to mention, every morning I take 600 IU D3, both my glands under my chin swell up and hurt and the chronic cough I had for 20+ years previously comes back.

My endo even commented on my bodies ability to retain calcium even with vitamin D deficiency.

At 400 IU D3, the cough is much reduced to non-existent.
Click to expand...
Ref range and why was it not in above table you shared?

Where is your calcium issue? Doc may politely suggest behavioral therapy.

History of anxiety / OCD / hypochondria?

www.mayoclinic.org

Illness anxiety disorder - Symptoms and causes

www.mayoclinic.org www.mayoclinic.org
 
J

JmarkH

Well-Known Member
Why hasn't your endo taken you off D3 cholecalciferol and placed you on D2 ergocalciferol supplementation? Calcifediol is the form of vitamin D found circulating in the blood. My wife's endo did. I've so far not been able to find the research but in general: D3 can make calcium less available to bones and more available in the blood to areas such as the heart. D2 lets more calcium be available for bones. I'll keep looking. One link is D3 vs D2 but it isn't the one I remember.
 
A

ajax31

Active Member
Get your magnesium RBC (intracellular) level checked. I would do that before diving down the calcium-parathyroid rabbit hole.
 
G

Gladiator

Active Member
I have had many arguments with doctors. I hade my head split open and received brain damage. Doctors told me I had nothing wrong with me. All my symptoms come from the medication I was on. I had stoped the medication for 3 months and still had all the symptoms.
Turned out major head trauma caused low testosterone.
Even after suffering from low vitamin D I had to argue with a doctor to get a test.
I told the doctors I should just stop taking vitamin D as apparently if I don’t need a blood test I don’t need to take it anymore.

10 years later I’m still doctor shopping to find someone to refer me to specialists.

I don’t like having to doctor shop but I need blood tests and medical help.
 
Systemlord

Systemlord

Member
I forgot to add, 10 minutes after I take my 400 IU D3, my glands under my neck swell up and hurt and I may start coughing!

I also notice my sleep suffers, which my Apple Watch Ultra clearly shows a significant reduction in the number of hours in REM sleep.
 
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