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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

Discussion in 'Phoenix Rising Articles' started by Legendrew, Jul 10, 2014.

  1. Legendrew

    Legendrew Content team

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    Legendrew submitted a new blog post:

    Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

    Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.

    Chronic fatigue syndrome or ME/CFS is, whether we like it or not, by current definition a diagnosis of exclusion. The biggest diagnostic task is therefore differentiating it from the plethora of other disorders that also have a fatigue component.

    ME/CFS may be distinguished from other causes of fatigue on the basis of certain presenting symptoms such as cognitive dysfunction, which is not present in almost all other fatigue-producing disorders. Once a specific cause of fatigue has been diagnosed, CFS is then excluded, by definition.

    The problem that arises, however, is that almost any chronic illness that produces extensive disability and fatigue may be included in the differential diagnosis. Therefore it is very difficult to ensure that everything is adequately ruled out before a diagnosis of ME/CFS is reached.

    This diagnosis of exclusion is often a very time-consuming and expensive task. For these reasons the diagnosis of ME/CFS is often given somewhat prematurely.

    Conditions that can cause fatigue include the following:

    • Chronic heart disease
    • Psychiatric illnesses
    • Thyroid diseases
    • Connective tissue diseases
    • Chronic anemia
    • Neoplastic (cancerous) disease
    • Chronic infections (e.g., HIV/AIDS)
    • Endocrine diseases (e.g., Addison disease)
    • Inflammatory bowel disease
    • Drug abuse
    • Liver disease
    • Renal disease
    From this broad, but far from exhaustive, list it is clear that there is an abundance of very different conditions that need to be excluded before ME/CFS is diagnose. However one disease that is often omitted from such lists is hyperparathyroidism.

    Often mistaken for its close namesake, hyperthyroidism, hyperparathyroidism in fact has nothing in common with the thyroid in function, and is so named because the troublesome gland in question simply lies in such close proximity to the thyroid.

    There are two different types of hyperparathyroidism: primary and secondary.

    Primary hyperparathyroidism is caused by one or more benign tumours (adenomas) of the parathyroid glands. Normally these glands control blood calcium levels by secreting parathyroid hormone (PTH) when blood calcium levels drop beyond the normal range.


    [​IMG]
    Diagram showing location of parathyroid glands
    PTH stimulates the release of calcium from the bones and also stimulates the conversion of inactive vitamin D to active vitamin D, which aids in the digestion of calcium. When an adenoma is present, very high levels of PTH are released which results in a high level of blood calcium. It is this hypercalcemia which is thought to produce the symptoms.
    The symptoms of hyperparathyroidism include weakness and fatigue, depression, bone pain/osteoporosis, muscle soreness (myalgias), nausea/vomiting, constipation, headaches, frequent urination (polyuria) and kidney stones.

    The symptoms typically develop slowly. However, they may appear very suddenly and severely. This is often known as a parathyroid crisis and can be fatal if left untreated.

    Hyperparathyroidism is also associated with a high risk of pancreatitis (both acute and chronic) which can cause acute abdominal symptoms such as cramping, nausea and diarrhea.

    Furthermore, hyperparathyroidism is very often seen in combination with a vitamin D deficiency which can make diagnosis somewhat more difficult. From the above list alone, it is clear to see why hyperparathyroidism should always be tested for in ME/CFS patients, given the similarity of the symptom presentation.

    The tests for this condition are blood calcium which shows as unusually high, parathyroid hormone levels which are very high, alkaline phosphatase which can sometimes be elevated, vitamin D levels which are very often low and phosphate which is also sometimes low.

    Testing can prove difficult however, with calcium and PTH levels fluctuating quite wildy. This however is quite indicative of the condition, as under normal circumstances calcium and PTH remain very consistent. If hyperparathyroidism is suspected, then a scan will be recommended to try and see whether there is a visible tumour present, although diagnosis is made through blood tests alone.

    As previously mentioned, there is also a condition known as secondary hyperparathyroidism, in which PTH levels are elevated. However, this only usually occurs in patients with chronic renal failure, abnormally low levels of calcium (hypocalcemia) and sometimes as a result of vitamin D deficiency. This is normally differentiated from primary hyperparathyroidism by correcting the deficiency and observing the calcium and PTH level response.

    The first line of treatment for primary hyperparathyroidism for the majority of patients is a minor surgery, under general anesthesia, to remove the tumour which in turn removes the PTH excess and allows the calcium levels to return to normal.

    This is not a major surgery, with the majority being done today via keyhole surgery, and is usually undertaken as an outpatient procedure. This surgery also boasts impressive cure rates as high as 95% with the remaining 5% often having another parathyroid tumour which was missed during the first surgery.

    Of all the missed diagnoses of ME/CFS and fibromyalgia, primary hyperparathyroidism proves to be one of the most tragic simply as a result of how treatable the condition is relative to the suffering it can cause.

    If any of the symptoms sound somewhat familiar, be sure to mention this to your primary care physician. A couple of simple blood tests could lead you to a long overdue answer to your personal health problems!

    For more information on hyperparathyroidism be sure to visit Parathyroid.com.


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    Continue reading the Original Blog Post
     
    Last edited by a moderator: Jul 10, 2014
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  2. Soundthealarm21

    Soundthealarm21 Senior Member

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    Oh how I wish it was as simple as Hyperparathyroidism.
     
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  3. xks201

    xks201 Senior Member

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    How about hypoparathyroidism? Everyone always assumes hyperparathyroidism is more common. With hypoparathyroidism you would have low calcium which would cause fatigue and vitamin d metabolism problems which could cause fatigue.
     
  4. rwac

    rwac Senior Member

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    @xks201
    The treatment for hypoparathyroid is just to take calcium several times a day and vitamin D.
     
  5. xchocoholic

    xchocoholic Senior Member

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    In my limited experience both people I know who had this had high calcium in their blood tests and slight fatigue. So I wouldn't consider this me/cfs just misdiagnosed cfs.

    As expected, surgery to remove cyst lowered their calcium levels.

    Fwiw both were eating the Standard American Diet and had the other common conditions associated with poor diet and were taking prescription medications.

    Tc .. x
     
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  6. Aidan Walsh

    Aidan Walsh

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    I always feel better when I take natural Vitamin 'D' and Calcium but I am unable to take the Vitamin D3 Doctors prescribed it upsets my stomache badly...How many people are told this is their problem from the CFS community, are they finding small percentages or this is just more hype going on? What about testing 100's of patients, Japanese and European researchers also say we have B-12 deficiencies as their normal value numbers are for men between 500-550 and my latest serum B-12 is at now 304 and here in U.K. they say this is a normal range but who's right. I would like to know more on this thyroid issue and what is the best test for this to go with, I am also followed by Endocrinologist and they say my thyroid seems ok by their tests results...Great post here, it's interesting but shocking to think that someone could go decades with a stupid CFS diagnosis and have something entirely different going on inside them. How much Calcium 'what type' and how much vitamin 'D' is good for this thyroid issue aboove? Thanks for this post it opened my eyes, now time to snooze :) I just got back my Serum Tryptase test for Systemic Mastosytosis/Mast Cell Activation Disorders and my level was in normal range at 4.3 but this does not rule out 'Histamine Intolerance' to foods which are other diagnosises found in misdiagnosed CFS patients. I await now further tests and will post any/all results...Get well soon everyone it's a real f'r that's for sure...
     
  7. Aidan Walsh

    Aidan Walsh

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    xks201 would there be any Calcium or Vitamin 'D' that would be better to take from a natural alternative or pill forms bought at health food stores and how much would be Optimal? thanks Aidan Walsh...
     
  8. liverock

    liverock Senior Member

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    Studies are finding out two important facts about primary hyperparathyroidism (PHPT).

    1) Its misdiagnised as fibromyalgia in a subset of FM patients.
    http://www.cortjohnson.org/blog/201...lgia-hyperparathyroidism-treatable-condition/

    2) Primary care Doctors very rarely come across high calcium levels and when they do, they quite often adopt a 'wait and see' attitude because of ignorance of the seriousness of small elevations in blood calcium levels.

    This fibro doctor reckons its quite common for a delay in primary doctors referring patients diagnosed with FM or CFS, sometimes years which was really PHPT.
    http://thefibrodoctor.com/what-is-hyperparathyroidism/

    This study showed a failure of 62% of primary doctors to treat or refer patients for specialist treatment of PHPT.
    http://pubmedcentralcanada.ca/pmcc/articles/PMC3363079

    If this PHPT misdiagnosis is happening in fibromyalgia its probably happening with CFS as well, due to the overlap of some symptoms.

    The lesson for us is to insist on having a copy of our blood calcium levels and if elevated above 10(2.5 for European tests), then insisting on a PTH test to check for PTH malfunction. Dont accept a 'wait and see' attitude from doctors who may not understand what they are dealing with.

    The last thing I would want with elevated calcium and possible benign growth on the parathyroids is to 'wait and see'. High calcium can cause kidney failure,breast or prostate cancer, heart attack or heart failure.
     
    Last edited: Jul 11, 2014
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  9. Firestormm

    Firestormm Guest

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  10. Aidan Walsh

    Aidan Walsh

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    Liverock, is the Calcium test that's done is it the same blood work as a Plasma calcium level? My latest blood on this was 2.35 in U.K. with Plasma range 2.20-2.60 in ranges unless this is not the test you talk about above. thanks :) Aidan...
     
  11. liverock

    liverock Senior Member

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    Yes, thats the calcium level talked about.yours is within range. The maximum level in the range keeps creeping up, it used to be 2.50 then 2.55 now its 2.60. Probably upped it in the UK to reduce the number of hyperparathyroid operations. NHS budgets and lack of experienced surgeons, usual reasons.
     
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  12. Aidan Walsh

    Aidan Walsh

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    Thanks for replies liverock, I am going to look at older tests as well just to see plus I take regular Prednisolone so I want to make sure it does not change Calcium finds but I do have Ostoepenia done scan recently...thanks...Aidan...
     
  13. Aidan Walsh

    Aidan Walsh

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    I just found a link on one of the sites that shows Calcium levels can be in normal ranges they call it Normocalcemic Hyperparathyroidism I think it is found in 4% of patients...
     
  14. Legendrew

    Legendrew Content team

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    Yes, I neglected to mention this in my article to avoid over-complication of the topic area but increasingly normocalcemic hyperparathyroidism is becoming a clinical entity. However it is worth mentioning that this may be as a result of co-morbid vitamin D deficiency which lowers intestinal absorption of calcium hence masking the hypercalcemia however upon replacement of the vitamin D hypercalcemia is often marked.

    I also neglected to mention that there are two blood calcium tests avaliable; the standard test is corrected calcium and is the most frequently used to diagnose the condition; corrected calcium being an estimate of total calcium level given the concentration bound to albumin (a protein in blood).

    There is however another test avaliable, known as ionised (ionized in the US) calcium - this is a test measuring the free calcium level (ie not binded to a protein in the blood) and is often raised in patients who have hyperparathyroidism but present with borderline corrected calcium levels. This test is slightly more expensive and many labs do not carry it out, it would be worthwhile though if you have symptoms of hyperparathyroidism and borderline corrected calcium levels.
     
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  15. liverock

    liverock Senior Member

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    Thats right, Normocalcemic Hyperparathyroidism usually has very obvious symptoms not found in most normal cases,such as elevated amount of kidney stones,high prevelance of bone fractures, high alkaline phosphatase and a urine calcium test usually shows high levels.
     
    Last edited: Jul 11, 2014
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  16. xks201

    xks201 Senior Member

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    But active prescription vitamin d...
     
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  17. xks201

    xks201 Senior Member

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    So you think CFS is a disease with one cause that excludes any patients who essentially have the reason they are fatigued discovered?
     
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  18. xchocoholic

    xchocoholic Senior Member

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    No.
     
  19. barbc56

    barbc56 Senior Member

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    Andrew, thanks so much for this article.

    You can indeed have high normal calcium blood levels and still have hyperparathyroidism. I have passed several kidney stones over the last few years and each time my doctor ordered the calcium test which has been midrange of normal. She said that even with a calcium level in the high normal range hyperparathyroidism needs to be ruled out.

    My stones were caused by a blockage from infections so no hpt but it's good information to know.

    Again thanks

    Barb
     
  20. Aidan Walsh

    Aidan Walsh

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    What is coming up a lot across the web including Facebook are people diagnosed with Histamine Intolerance with low DAO enzyme levels as a result of histamine in food consumption...There is a site now on Facebook under Histamine Intolerance :)
     

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