Well-equipped…

On Sherlock’s wise recommendation, my most recent set of tests (April) included a set of osteoporosis ones. I have two good reasons to be on top of my bone health: 1. my mother, who is almost 80 years old, has osteoporosis, and 2. as we know, myeloma weakens and damages the bones, causing bone pain, fractures and hypercalcemia (too much calcium in the blood due to bone destruction). Bone pain, in fact, is the most common symptom of myeloma at the time of diagnosis.

Well, those results were all within normal limits except for one: my parathyroid hormone levels, paratormone in Italian, were a bit on the high side. Para-whaaat? I had to look this up online. Never heard of it before.

 

The parathyroid glands are four tiny glands located in the neck. As I learned from an excellent website (http://tinyurl.com/68x78n), they have nothing to do with the thyroid gland except for location: Parathyroid glands are small glands of the endocrine system which are located in the neck behind the thyroid. The thyroid gland controls body metabolism whereas the parathyroid glands control body calcium and phosphorus levels. These four glands produce the parathyroid hormone (PTH) whose only function is to control calcium levels in the blood. If our body calcium is low, the glands produce more PTH to raise calcium levels. If blood calcium levels rise, though, the glands decrease PTH production. This is the normal situation.

 

But sometimes one or more of the glands can develop a benign tumour that causes it/them to secrete more PTH than needed. Blood calcium consequently rises. This is called primary hyperparathyroidism. The risk of osteoporosis and fractures increases. This is not my case: my blood calcium is the lowest it has ever been.

 

Secondary hyperparathyroidism or SHPT is instead caused by long-term low levels of blood calcium. It is typical of people with chronic renal failure (again, not my case) or with vitamin D deficiency. Aha! That could well be my case, since SHPT blood tests show elevated parathyroid hormone levels but low or normal calcium levels.

 

Of course, I also checked Internet to see if there was a connection between hyperparathyroidism and myeloma. There is. This makes sense when you consider that one of the symptoms of myeloma is too much calcium in the blood, as we have seen. But usually, when myeloma patients’ parathyroid levels are high, so are their calcium levels. Not my case. So I was able to exclude myeloma as a cause for my overly active parathyroid glands.

 

Since I am not a medical doctor, though, at times my interpretation of test results requires confirmation. To make a long story short, I went to see an endocrinologist yesterday morning. I had never been to an endocrinologist. It turned out to be a very interesting visit.

 

She didn’t seem overly concerned about my highish parathyroid hormone result but told me that it could be caused by one of two things: a. lack of vitamin D (bingo!), or b. a batty gland that can be removed…surgically. Obviously, I hope option “a” turns out to be the correct one. So, what do I need to do? Easy peasy: stop taking vitamin D for 3-4 months and then have my tests repeated. If my parathyroid level increases, that would confirm a diagnosis of vitamin D deficiency. If not, then we will consider the whacky gland option.

 

The endocrinologist told me that, if she were in my situation, she would do exactly what I am doing–take curcumin etc. (how about that?!!!). She was very matter-of-fact and used very simple words to describe active myeloma as a form of (very very very bad!) osteoporosis that erodes the bone from within. While destroying the bone, it also prevents bone reformation. Nothing new to me, but I was impressed by her knowledge of this cancer.

 

She also told me that specialists, from haematologists to radiologists, tend to shut themselves inside their highly focused specialistic box and forget to peek outside that little box. She instead strongly believes that it is dangerous to forget that patients may have other things going on that affect their general state of health and that could also be affecting the specific condition under treatment—myeloma or whatnot. She said that we must take care of health issues before they turn into problems instead of waiting until it’s too late. Of course, that is not always possible, but in my case it is because I was diagnosed early.

 

She told me that we should be “well-equipped” in case my myeloma becomes active some day. I certainly didn’t argue with that!

 

She also highlighted the importance of physical activity, so I see many walks and treks in my future Smiley face. Stefano and I are now planning our summer holiday that will include at least one natural reserve. Wherever we decide to go, it will be near a park with heaps of nature trails.

 

In conclusion, I would like to recommend…indeed, highly recommend!…that every myeloma patient go to an endocrinologist and have bone-related tests. Take care of your bones to prevent possible future problems. Of course, those of us who are lucky to be asymptomatic hope to remain so and never develop any of the problems related to this cancer. But…just in case…!!!

7 Comments

  1. Hi Margaret,
    I am curious as to why your endocrinoligist didn’t just order a 25-hydroxy-vitamin D test to determine not only if you are vitamin d deficient, but also how deficient you are, so you can have a basis to determine if the amount of choleacalciferol you supplement is enough to get you into the normal range or not?

    Sun is a great and easy way to get your 25-hydroxy-vitamin D level into the normal range, but the test is good to determine your starting level and how much sun or supplement to take in.

    If you’re already deficient, do you really want to make yourself more deficient by discontinuing your d-3 supplement for 3 to 4 months?

    I thought you had already, but if you haven’t, you might do a little research on the relationship between vitamin d and cancer……..very interesting research out there on the subject…….a lot of it!

    Art

  2. Great post, Margaret 🙂
    In my opinion an endocrinologist is the second doctor a MM patient should see on a regular basis. Among the many things they do, endocrinologists take care of the structure of our bones, something extremely important to us!

  3. It is amazing how often your topics coincide with my situation of the moment! Just got my PET scan results: no evidence of MM (lesions), but I have a fracture in a part of my pelvis! No wonder I had pain in my groin. Good old osteopenia at work again! Did your endocrinologist suggest any medicinal treatments yet? It is problematic for me, because most bone strengthening agents hurt the kidneys (already damaged by my light chains). My onc. is looking into something (drug-wise) for me, but I am thinking of finding an endocrinolgist after your post.

    Thanks!
    Lisa
    Lisa

  4. Hi, Margaret.

    I second the motion for seeing an endocrinologist. Many oncologists don’t tell patients to take vitamin D, but someone must do that. I’ve been particularly surprised about this omission in regard to MM.

    Cathy

  5. Hi Margaret

    I had to take a private Vit D test before they would recognise my levels were low, I would get a test done even without stopping your supplements as it took some time of supplementation and sunny holidays to boost my levels that now seem to stay stable with a combination of supplementation and sunny hols once a year. It is important to check levels regulary once you supplement though as you theoretically can over do it.

    What was the name of the test you had done, as my doctor currently won’t refer me to an endocrinologist!!! Why can’t these docotors listen to the patients thoughts on what their body is telling them.

    Best of health as always

    Sue

  6. For some reason osteoporosis runs rampant on my mother’s side of the family. I think all 13 of my cousins on that side have it, including the men, some of whom have it very severely.

    I had my first DEXA (bone density) scan at age 48, and by then I already had 20% bone loss. I was treated for a year with hormone replacement, miacalcin, and calcium supplements. After that year my bone density was in the normal range again, but has been falling again ever since. I have DEXA scans every year now. It was just a few years after that first DEXA scan that I was diagnosed with MGUS. I have read that even without progression to MM, that MGUS is known to accelerate bone loss. Margaret, like you, I have had elevated Parathyroid hormone, while having normal blood calcium levels, and a deficiency of Vitamin D. Question: does vitamin D deficiency cause the formation of MGUS, or does MGUS cause the vitamin D deficiency? In other word are the aberrant cells simply hyper-consuming it? So are we simply stoking the flames by supplying more of it, in a similar way that glucose stokes the flames? Even with 1000 iu of Vitamin D per day I was still borderline deficient according to my blood test. So my endocrinologist increased my D3 to 2000 iu daily.

    I’ve also read that elevated parathyroid hormone is associated with inflammation. I’ll just bet there’s a connection with NF-kB! Just 20-30 minutes of sunlight provides us with 20000 iu of vitamin D. So I guess it’s pretty easy to become deficient if you’re an office worker, especially in wintertime. As an optometrist I worked for 20 years in a dark room with no windows, so I suspect I was vitamin D deficient for many years before blood tests were done which finally showed it. I urge all of you to request a D3 blood tests, and have DEXA scans at least every two years. DEXA scans expose you to only a small fraction of the radiation received when having a regular x-ray.

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