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Secondary hyperparathyroidism and calciphylaxis symptoms; an update with lab values

Last month I described some health difficulties that I had been experiencing for quite awhile. Lab tests that had been drawn earlier in the summer suggested that the problem might be secondary hyperparathyroidism and I also had been having a number of odd symptoms including calciphylaxis that can be associated with secondary hyperparathyroidism but is a more common in end stage renal disease (ESRD) particularly for patients on dialysis who were also receiving calcium supplements (and calciphylaxis is associated with eight times increased morbidity in ESRD). In the second post I reported that I was already feeling much better on the treatment plan that I had developed for myself.

I started taking 300-500 mg calcium per day based on the theory that the symptoms were related to calcium deficiency secondary hyperparathyroidism. I also increased my protein intake except for eliminating egg white and tree nuts from my diet – as a precaution in case I had developed autoimmune sensitivity to those protein sources which I had been eating more regularly than other foods during a time when I wasn’t eating enough overall. A steroid skin cream containing Triamcinolon 0.5% applied twice a day helped the calciphylaxis like skin sores heal. And I started taking 40 mg Benicar/olmesartan per day in an attempt to modify the low vitamin 25 D and vitamin 1, 25 D > 42 pg/mL. Levels of vitamin 1, 25 D above 42 pg/mL signals the bones to release calcium and phosphorus and can increase risks of osteoporosis and soft tissue calcification. [1, 2: MPKB- Science behind olmesartan (Benicar).]

  1. Secondary hyperparathyroidism, calcium deficiency and irritability, 
  2. Elevated parathyroid hormone (PTH) and 1-25-D, calcium deficiency and calciphylaxis, 

The 6/15/15 lab values:

  • Parathyroid hormone level – PTH Intact – 154.1 pg/mL — normal range: [15.0-75.0]
  • Calcium – 8.8 mg/dL — normal range: [8.4-10.2]
  • Phosphorus was not ordered but would probably be good to check.
  • Vitamin D, 25 – 10.9 ng/mL — normal is considered: [30.0-100.0]
  • Vitamin D 1, 25 – 55 pg/mL — normal is considered: [18-72] (the active hormone D)

The 10/12/2015 lab values:

  • Parathyroid hormone level — PTH Intact — 66.1 pg/mL — normal range: [15.0-75.0]
  • Calcium — 9.3 mg/dL — normal range: [8.4-10.2]
  • Serum Phosporus — 3.6 mg/dL — normal range: [2.5-4.5]
  • Vitamin D, 25 — 18.4 ng/mL — normal range: [30.0-100.0]
  • Vitamin D 1, 25 — 36  pg/mL — normal range: [18-72] (the active hormone D)

So I started taking calcium supplements and 40 mg of Benicar on September 23 and on October 12 my parathyroid hormone level is back within the normal range. My active 1, 25 D is below the osteoporosis inducing level of 42 pg/mL and my inactive vitamin 25 D level increased from 10.9 to 18.4 ng/mL — even though I am not taking vitamin D supplements but I do get more than fifteen minutes of sunshine most days of the week. My calcium level is still within the normal range but it went up from near the low end of the range to closer to the middle, from 8.8 to 9.3 mg/dL.

During the last couple days the calcium supplements have been causing me to have increased muscle cramps and irritable mood and I found that soaking in Epsom salt tub or footbath helped reduce the muscle cramps and bad mood. So the balance between magnesium and calcium intake is important and intestinal malabsorption of magnesium may be part of the underlying problem.

Overall I’m feeling much better than I was in early September before I started taking the calcium supplements. I had been having a racing heartbeat on very little exertion (like tachycardia) and for a long time I had been having an internal jittery-ness that felt like a bottled up pressure that needed a release valve or pinprick to pop the overfull bubble. The painful skin sores had been a fairly new and very unpleasant development. So yippee I have skin again! And I can walk downstairs without having to pause to let my heart rate slowdown.

I still have autoimmune thyroid antibodies but my thyroid hormone and thyroid stimulating hormone levels are within normal range — 10/12/2015 lab values:

  • Serum Thyroglobulin AB — 41 IU/mL — normal range: [0-40]
  • Serum Thyroid Peroxidase AB — 301 IU/mL — normal range: [0-34]
  • T3 Free Serum — 4.09 pg/mL — normal range: [2.77-5.27]
  • T4 Free Serum — 1.14 ng/dL — normal range: [0.65-1.86]
  • Serum Thyroid Stimulating Hormone — 1.20 mIU/L — normal range: [0.46-4.68]

To prevent autoimmune hyperthyroid symptoms I have been avoiding foods containing gluten and iodine sources since receiving the diagnosis in 2013. The gluten protein molecule contains a section called gliadin that is chemically similar to the thyroid hormone. The chemical similarity between gliadin and the thyroid hormone may allow autoimmune thyroid antibodies to develop in susceptible individuals, so avoiding gluten in the diet may be helping reduce or prevent the production of the autoimmune thyroid antibodies.

–The bad news – my endocrinologist still wants me to take a vitamin D supplement for my low vitamin D. [previous post: Whether to be compliant or to be healthy seems like an easy question to answer, 

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

 

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Hormone D is made from vitamin D

Vitamin D and hormone D are metabolically linked by one enzyme. Testing only the vitamin does not prove a deficiency of the hormone. There would be more children with rickets if the food supply or sunlight supply was inadequate in vitamin D or cholesterol. Statin drugs stop the liver from producing cholesterol so people taking statin drugs long term could be more at risk for low levels of both vitamin and hormone D. However they would also need to be avoiding sunlight, dairy products, egg yolks, some types of fish and other vitamin D fortified foods like breads and cereals.

If an epidemic of rickets isn’t a problem [3] then probably a reasonable amount of vitamin D has been available over the years. There is certainly an association between chronic disease and low vitamin D levels but it has not been adequately proven that low vitamin D is causing the chronic disease or whether it is a side effect of some other condition. It has been proven that the enzyme that converts vitamin D to the active hormone D is made in some types of cancer and autoimmune disease. There are two tests necessary to prove a deficiency of both the vitamin and the actual hormone D. It has been proven that excess hormone D can cause chronic degeneration from excess calcium leaving the bone tissue and it causes pain.

Two tests are needed to show whether there is deficiency of vitamin D or whether there is actually excess hormone D. The test for vitamin D levels doesn’t measure the amount that was converted into hormone D which is the form that signals bones to release magnesium and calcium from long term storage. It also signals the intestines to preferentially absorb more calcium than magnesium. Magnesium is inexpensive but it isn’t absorbed well when there is also a lot of calcium in the food or supplement or when there is excessive hormone D levels.
Two tests for D can show who needs further testing vs who needs supplements or diet guidance.The good news suggested to me, by the limited number of cases of rickets in comparison to the large number of people with low vitamin D levels, is that having both the hormone and vitamin levels tested would show who needs a vitamin and who might benefit from more testing for underlying issues.

Testing for chronic infection or cancer can catch treatable problems in much earlier stages of disease before osteoporosis or soft tissue calcification are allowed to happen. If the hormone level is elevated and the vitamin is low there can be a treatable reason why the enzyme between the two forms is overactive. Or sometimes there is an issue with too little activity by the enzyme that breaks down the hormone and too little enzyme activity allows the hormone to build up to excess levels.

Making too much active hormone D or not breaking down the excess can lead to worsening chronic disease over time. Measuring both the vitamin and hormone levels of D can show who needs a vitamin and who might need antibiotics or other treatment and who might be harmed by the use of excess supplements of D over time. So, yes, vitamin D is important and many people have been found to have low levels but we haven’t been measuring the level of the active hormone in many research studies and it is more powerfully active within health and illness.

Agribusiness and processed food are an essential part of the food supply. Improving food labeling would help people with food sensitivities or allergies to avoid risk without requiring all processed foods to change ingredients. Standardizing fortification levels helps with menu planning for a healthy diet for individuals and residential facilities.

Corporate profit and national viability is affected by the cost of health care and that won’t get cheaper if the same wrong solutions are pursued. One vitamin or medicine can never grow a body or give the body the nutrient building blocks that are needed for healing.
Multiple nutrients are necessary for preventing chronic disease and repairing health.

Recognizing that there is a link between elevated hormone D and low vitamin D will be important for the long term effectiveness of any health care system for any business or country. Pursuing vitamin D supplements as an easy solution to chronic disease has not been working and any one nutrient solution will not work to build health. Magnesium or iodine are not single answer solutions either. Vitamin K, selenium, zinc, vitamin C and B’s and the essential fats and phospholipids are necessary as well as adequate calories and protein.

Many nutrients working together help maintain quality of life and reduce pain and chronic degeneration. Basing health care on medical and surgical solutions alone can not solve or prevent all types of health issues. Those types of solutions are needed for acute repair but chronic degeneration needs prevention strategies and many nutrients working together within the body.
/Disclaimer: Information presented on this site is not intended as a substitute for medical care and should not be considered as a substitute for medical advice, diagnosis or treatment by your physician./

Reference List

  1. Canadian Medical Association Journal (2012, November 5). Low vitamin D levels linked to longevity, surprising study shows. ScienceDaily. Retrieved November 11, 2012, from [sciencedaily.com­] *The study control group had higher levels of vitamin D and had more chronic concerns. Low vitamin D levels is only important if there is also low hormone D levels.
  2. van Heemst D., Leiden Longevity Study, Longevity Research Background, in Dutch, [langleven.net]
  3. Lazol JP, Cakan N, Kamat D. 10-year case review of nutritional rickets in Children’s Hospital of Michigan. Clin Pediatr (Phila). 2008 May;47(4):379-84. Epub 2008 Jan 11. [ncbi.nlm.nih.gov] *The charts of 58 children with rickets diagnoses were found for a ten year time period at one hospital, 96% of them were exclusively breast fed and ethnicity suggests many may have hard dark skin tones which blocks sunlight production of vitamin D. Ideally vitamin D supplements would be recommended for exclusively breast fed infants during preventative nutritional counseling. So roughly 6 children per year at a large hospital with rickets – that is a much smaller number than “35% of American Children.” [4]
  4. Bener A., et al.,Vitamin D Deficiency as a Strong Predictor of Asthma in Children. Int Arch Allergy Immunol 2012;157:168–175 [content.karger.com] *The study participants were found to have lower vitamin D levels than the control group but they also were found to have lower magnesium levels and increased bone turnover levels which would suggest to me they actually had elevated hormone D but that wasn’t tested. Magnesium is cheap but it isn’t well absorbed if there is elevated hormone D due to some other unidentified issue. Vitamin D supplements and food were used by a significant number of the study participants.     Excerpt from this paper that is in reference to a different paper: “Litonjua and Weiss  [16] found that 35% of American children were vitamin D deficient and these children were at a greater risk of severe asthma attacks.“
  5. Hashimoto Y, Nishimura Y, Maeda H, Yokoyama M. Assessment of magnesium status in patients with bronchial asthma. J Asthma. 2000 Sep;37(6):489-96. [ncbi.nlm.nih.gov] *The magnesium levels were similar between asthmatic and control groups in the serum blood test but the magnesium level inside of red blood cells was lower in the asthmatic group.