I have an interesting abnormal blood test result that my doctor thinks is connected to my ME/CFS

[Eobara]

For the past 6 months my blood work has been showing high calcium (hypercalcemia). It started with me getting a basic metabolic panel over the summer which showed slightly elevated calcium, and from there I did a bunch of other tests. My regular calcium has been normal ever since that one time, but my ionized calcium has been elevated now for 4 measurements.

I have ruled out typical causes of hypercalcemia with my endocrinologist like hyperparathyroidism, cancer, and taking too much vitamin D. She thinks that my calcium is high because of immobilization which I have to do because of ME/CFS. Basically she thinks that my bones are breaking down after not using them enough, and I will have to go on an osteoporosis medicine to treat this. What is interesting though is that I have never really heard of other ME/CFS patients having this same problem. I would rate myself as moderate and mostly housebound, meaning plenty of patients are even more immobile than me! The endocrinologist explained that it might only affect me because I am an adolescent and because I was in particularly good shape before getting ME/CFS, and these are risk factors.

I know calcium may have a direct role in ME/CFS too with the TRPM3 and intracellular calcium problems. Do you think this could be connected to my high ionized calcium? Most people on here probably have never had their ionized calcium measured, so I wonder if that is more commonly elevated than once thought?

Does anyone have any thoughts on this topic?

 

[wabi-sabi]

Are you around menopause (if this applies)?

 

[Eobara]

Are you around menopause (if this applies)?

No, I am an 18 year old male.

 

[wabi-sabi]

I haven't heard of ME/CFS people having calcium problems like the one you mention either.

Here's a list of common causes of high serum calcium in teens:

Hypercalcemia in children (over 2 years of age) and adolescents

• Excessive calcium intake
• Phosphate depletion
• Parenteral nutrition
• Hyperparathyroidism
  • Acquired primary
    • adenoma
    • multi-glandular
    • carcinoma
  • Genetic primary
    • autosomal dominant/récessive FHH
    • familial
    • MEN types I and IIa (IIb)
    • Hyperparathyroidism-Jaw tumor
  • Autonomous (tertiary)
• Hypervitaminosis D
  • Excessive intake
  • Granulomatous diseases: cat scratch fever; sarcoidosis; tuberculosis; histoplasmosis; coccidiomycosis; leprosy; HIV
  • Chronic inflammatory disorders
• Williams syndrome/ Idiopathic infantile hypercalcemia
• Immobilization
• Malignancy associated hypercalcemia
  • Primary bone tumors
  • Metastatic tumors with osteolysis
  • Tumors secreting PTHrP, prostaglandins, cytokines, growth factors
• Hepatic disease
• Hyperthyroidism
• Adrenal insufficiency
• Pheochromocytoma
• Vasoactive intestinal polypeptide-secreting tumor
• Drugs (thiazides, lithium, systemic retinoid derivatives, theophylline, acetosalicylic acid)
• Milk alkali syndrome/ calcium gluttony
• Renal tubular acidosis

Citation: Lietman, S. A., Germain-Lee, E. L., & Levine, M. A. (2010). Hypercalcemia in children and adolescents. Current opinion in pediatrics, 22(4), 508–515. https://doi.org/10.1097/MOP.0b013e32833b7c23

 

[Zebra]

Hi, @Eobara

@wabi-sabi's comprehensive differential diagnosis for hypercalcemia seems like a good place to begin your investigation..

I wanted to draw attention to Sarcoidosis, which can cause hypercalcemia and is on the list above.

Sarcoidosis does not always effect the lungs, which is why there's "Extrapulmonary Sarcoidosis" and "Neurosarcoidosis".

Sarcoidosis is very difficult to diagnose, and the fatigue it causes is comparable to ME/CFS.
I believe Sarcoidosis is sometimes called "The Great Mimicker/Imitator/Masquerader".

I don't know what your symptoms are, other than fatigue, but I hope you'll look up Extrapulmonary or Neuro Sarcoidosis and see it it might be a good fit for you.

Best of luck!

 

[wabi-sabi]

I don't know what your symposium are, other than fatigue, but I hope you'll look up Extrapulmonary or Neuro Sarcoidosis and see it it might be a good fit for you.

Yep! You don't want an ME/CFS diagnosis if you don't have to have one.

 

[Eobara]

Hi, @Eobara

@wabi-sabi's comprehensive differential diagnosis for hypercalcemia seems like a good place to begin your investigation..

I wanted to draw attention to Sarcoidosis, which can cause hypercalcemia and is on the list above.

Sarcoidosis does not always effect the lungs, which is why there's "Extrapulmonary Sarcoidosis" and "Neurosarcoidosis".

Sarcoidosis is very difficult to diagnose, and the fatigue it causes is comparable to ME/CFS.
I believe Sarcoidosis is sometimes called "The Great Mimicker/Imitator/Masquerader".

I don't know what your symposium are, other than fatigue, but I hope you'll look up Extrapulmonary or Neuro Sarcoidosis and see it it might be a good fit for you.

Best of luck!

Unfortunately the my symptoms don't really match up to sarcoidosis, and my vitamin D was low-normal and I think it would be have to be high along with my hypercalcemia. I absolutely have PEM, along with fatigue, brain fog, and low-grade fevers, so I am pretty sure I have ME/CFS, as much as I wish it was something else. I also developed POTS and SFN at the same time. I have already had 9 separate blood draws to rule out most of those other conditions unfortunately.

 

[LINE]

I am likely out of the possibility, but did they check magnesium levels? Though one caveat, serum magnesium may not a true indicator of stores of magnesium.

 

[Eobara]

I am likely out of the possibility, but did they check magnesium levels? Though one caveat, serum magnesium may not a true indicator of stores of magnesium.

I got it checked a year ago but not recently (it was normal). It seems like low magnesium is linked to low calcium, so maybe my magnesium would have to be high?

 

[Mary]

Basically she thinks that my bones are breaking down after not using them enough, and I will have to go on an osteoporosis medicine to treat this.

Has she done any testing - e.g., a dexa scan - to see if you are indeed developing osteoporosis? It's an interesting theory, but she may not be right. And the medicine used to treat osteoporosis can have some pretty nasty effects and actually lead to more bone fractures. Bisphosphonate drugs like fosamax can help prevent bone loss but the bone that remains becomes more brittle and prone to fracture. Bisphosphonate can also lead to jaw bone death and thigh fractures.

Persons with "ordinary" osteoporosis due to age, diet etc., can rebuild bone with proper nutrition and supplements but many doctors seem to be unaware of this and just want to give the drugs.

Most people on here probably have never had their ionized calcium measured, so I wonder if that is more commonly elevated than once thought?

That's an interesting question! I'm sure most of us have not had ionized calcium measured and it would be good to know if it is more commonly elevated than ordinarily thought.

I wish I had an answer for you - maybe someone else here will -

 

[Tammy]

I absolutely have PEM, along with fatigue, brain fog, and low-grade fevers, so I am pretty sure I have ME/CFS, as much

High calcium levels can be linked to viral infections.

 

[Eobara]

Has she done any testing - e.g., a dexa scan - to see if you are indeed developing osteoporosis? It's an interesting theory, but she may not be right. And the medicine used to treat osteoporosis can have some pretty nasty effects and actually lead to more bone fractures. Bisphosphonate drugs like fosamax can help prevent bone loss but the bone that remains becomes more brittle and prone to fracture. Bisphosphonate can also lead to jaw bone death and thigh fractures.


I wish I had an answer for you - maybe someone else here will -

I think I am going to ask for a scan during my next appointment later this week. The doctor did say I would go on a bisphosphonate. I am worried about the side effects, but also worried about my current bone state.

 

[Eobara]

High calcium levels can be linked to viral infections.

Can you say anything more about this? Would this be an active infection?

 

[lenora]

Well @Eobara....You have a lot to think about (and so does your doctor, it seems).

This is a hard one and I was one of the early users of fosamax when it was first introduced. Probably 35 years later I've been told that I have to take a vacation of undetermined length (helpful, right?) from it, but I'll be put on something like prolia (an injectable drug, that lasts for 6 mos. at a time). I'm now 75, so there is a big difference in our ages. I'm not here as an example...because, like you, I don't know what to do.

Mary's right, the first step is for you to have a bone scan. See what stage of osteopenia you're actually in (osteopenia is the stage before you break something like your hip or something else, for that matter...then it becomes osteoporosis). I've had osteoporosis for probably 15 years....it starts with small things like your toe(s) or wrist, etc.

Things like steroids aren't great for osteo b/c of the weakness that follows when you stop taking them. I never had any tests to determine what I was lacking (although over the years there have been many things) and I now know that two types of epilepsy probably led to the falls and broken bones. On the other hand, I've had multiple falls where I just fall backward onto say our tile floor in the bedroom. Perhaps 10 of them altogether, maybe more. No damage, except perhaps the vertebrae.

I recently fractured my pelvis in a number of places, my vertebrae (for who knows how many times?) and have lost 3" in height. I take supplements and have almond milk as often as I can. Someone suggested mg. results...a good idea, also. Actually, you've had good input on here...but it's tough, isn't it?

Mary's right....all of these drugs to prevent a break can cause a broken femur and in some people (especially those treated for cancer) jaw problems. See your dentist and see what he/she has to say. The teeth are truly the microscope of the body, or so I'm told.

I've been in braces and casts since childhood and suspect that there is some genetic flaw. I won't even go into finding another diagnosis. I don't need one, my husband and even most of my doctors don't. Suffice to say that I have a lot of diagnoses of many serious problems, so I'm careful about falling now, can no longer go upstairs in our house (bedroom is down) and my husband installed grab bars everywhere in our bathroom.

I know how you feel....very confused, right? It's rather normal with our problems and it's not a good feeling. I would say that an endocrinologist is probably your best bet at the moment. And take those vacations IF you choose to take the drugs. There are no guarantees and I don't know what I'll do come May and the vacation. I won't be going on prolia, that I know.

No, diagnoses don't scare me....I figured I had these problems in my body long before they were diagnosed, so I take my vitamins and supplements, know I'll never have answers for some of it and I'm a hopeful person.

You're still young and have energy. Go forward and find out the cause if you want. Talk to as many personnel as you can...get opinions. And then, there's this: You're now considered an adult and this is one of the really hard parts. You have to make your own decisions. I do wish you well. Yours, Lenora

 

[wabi-sabi]

I am worried about the side effects, but also worried about my current bone state.

Yes, this is a good summing up of the situation.

Drugs do have side effects, but not treating something serious like bone loss also has consequences. The way to look at it is risks and benefits. What are the risks of not taking a medicine (and harming your bones) vs taking a medicine (and maybe having a side effect)? This is something you doc should be able to explain to you, although you may have to ask directly. Another way to think about it is looking at a definite bad thing (like bone loss from immobility) vs a potential bad thing (you may or may not get a serious side effect.)

 

[Springbok1988]

I’m a 34 year old male and have had high calcium for at least 14 years. I’ve had around 6 or 7 kidney stones during that time. They started around the same time I started experiencing mild fatigue. Doctors never bothered to figure out a cause. I have yet to find a doctor who wants to figure anything out. They just want to bandaid everything with medication and send me on my way. I was put on Urocit-K which is an extended release potassium citrate medication. I’ve been on it for about ten years. It helps lower calcium levels because each citrate ion has three sites that calcium can bind to before leaving the body. Now my calcium levels are just borderline high, rather than high.
I still don’t know what the cause is, though.

 

[Tammy]

Can you say anything more about this? Would this be an active infection?

Because you are having low grade fevers, I'm assuming that you have some kind of viral infection going on. I personally believe viruses are at the root of CFS along with some other environmental factors. The thing is , most of the time testing for viruses is not very accurate. Viruses can hide out in organs and not get detected as being active because they aren't always in the bloodstream. You can google viruses/infection and high calcium levels. It may not be common but there is some evidence.

Personally, I don't think your Dr. is right about the bone loss being related to inactivity.

 

[Wishful]

It could be a problem due to ME, but likely far downstream, so it might be better to treat it as a non-ME problem and seek diagnosis and treatment for it separately. It's possible they could find a direct cellular/molecular cause, but then say: "We can't figure out why it's doing that." because ME screws up so many systems in the body in mysterious ways.

Then there's the situation where your calcium levels are actually healthy for you, but simply higher than human average.

 

[Wayne]

she thinks that my bones are breaking down after not using them enough, and I will have to go on an osteoporosis medicine to treat this

Hi @Eobara -- These kinds of medications are short term solutions at best. My understanding is they essentially keep the body from breaking down old bone that needs to be replaced, so the bones become weaker and weaker.

I recall reading that after just 3-4 years or so of taking these medications, bones just begin to fracture with very little to no outside influence. They just fall apart. It's typical of conventional medicine, in that the thinking is (mostly?) about short term solutions, often at the expense of foundational health.

 

[Eobara]

Hi @Eobara -- These kinds of medications are short term solutions at best. My understanding is they essentially keep the body from breaking down old bone that needs to be replaced, so the bones become weaker and weaker.

I recall reading that after just 3-4 years or so of taking these medications, bones just begin to fracture with very little to no outside influence. They just fall apart. It's typical of conventional medicine, in that the thinking is (mostly?) about short term solutions, often at the expense of foundational health.

What is the better solution/long term solution? I know the best solution is exercise, but I can't do that right now due to my PEM.