Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

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.



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.


Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

Continue reading the Original Blog Post
 
Last edited by a moderator:

Comments

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...
A couple of things come to mind here:
The parathryoid glands are usually considered to be part of the thryoid gland, not just 'close by'. It's a separate function of a component of the gland, rather than a truly separate gland.

Also in hypothyroidism parathryoid hormone is increased, causing greater conversion of 0,25 vitamin D (considered semi-activated) to 1,25 vitamin D (fully active).

In answer to Aidans question, the setting of limits has more to do with 'whats normal' than whats healthy. With a very highly aging population, most of the limits in the the UK are too low (in my personal opinion). The UK definition of hypothyroidism requires you to be far more ill than the dutch equivalent.

So far as Vitamin D is concerned, you should take medical advice before supplementing Vitamin D is you suffer from Hyperparathyroidism and would need 1,25 Vit D checked instead of the usual 0,25 Vit D.
 
What comes first, the problem with the thyroid, parathyroid, calcium serum levels, or the ME/CFS?
 
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.
The CFS misdiagnoses which go on, is the very reason why its essential for it to be made necessarily to have "post exertional" fatigue and not just fatigue for diagnoses. All illnesses have "fatigue".
 
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.
* Thanks, I will ask my Doctor to rule out all above just to make sure it has not gone undiagnosed, any news on when the Florida surgeons will commence their study on CFS patients and how long before commenced or completed thanks :)
 
I have had a parathyroidectomy and my ME and fibro symptoms remain, although the horrible shooting pains in the bones have gone. Having untreated hyperparathyroidism for at least ten years whilst the specialist supposedly 'kept an eye on it' led to large kidney stones and has weakened my bones.
 
But active prescription vitamin d...
Would Angiontein 2 be involved on low cortisol a.m. levels as well such as 24 hour urine Cortisol measurements, mine is always low even with Prednisone given by Endocrinologist for years it never rises even on ACTH tests which I have had so many :)
 
Daily Telegraph:
Could a 'renegade' doctor save your life?
Talks about hypothyroidism how it may be overprescribed or underprescribed, the differences in test results and how the vary from country to country, and about 'maverick' doctors...
I asked NHS News about this and the thyroid tests, and ranges, and differences between UK and US on Twitter. While they couldn't help - though I also asked BMJ if they'd be interested in doing an article in general about ranges and interpretations and have yet to hear back - the NHS News directed me to this site:

http://www.labtestsonline.org.uk/understanding/analytes/thyroid-function/tab/glance/

For those of you who face this issue - I don't - you might want to follow-up with a suitable email to the lab. and ask them about it. If you are interested of course.

Strikes me as weird that the UK and US - especially - can conclude someone has it and someone doesn't simply by the range they use being different. I know there's more to it than that of course: but still, I think it's worthy of an article at least.
 
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
Hi all,

Re parathyroid disease.An excellent site is www.parathyroid.com....Many patients with this illness are not being diagnosed.I have had health problems for years....and in the case of this illness the site I have mentioned helped me to diagnose parathyroid disease.Dr Norman/Dr Pollitz eventually removed my adenoma(tumour)in Tampa..At that time they were doing about 10 per day.They also have to correct mistakes made by other surgeons.I had a big tumour and seemingly I had had it for about 12 years and an earlier diagnosis would have helped me.A number of years earlier I had cracked a bone in my leg easily(when I fell)....and I had kidney stones removed too but, no GP/consultant had diagnosed the parathyroid disease.
 
Hi all,

Re parathyroid disease.An excellent site is www.parathyroid.com
It is a decent site for diagnosis, however the big problem with it is that it is almost an advertisement for surgery. It should also be possible to treat elevated PTH with generous amounts of calcium and vitamin D/K (as I've done personally).
 
It is a decent site for diagnosis, however the big problem with it is that it is almost an advertisement for surgery. It should also be possible to treat elevated PTH with generous amounts of calcium and vitamin D/K (as I've done personally).
The low vitamin D and high calcium levels seen in hyperparathyroidism are the result and not the cause of the condition. Therefore, taking these supplements as a preventative measure is not addressing the underlying cause.

Supplementation is usually started after surgery. Sometimes medications can help if surgery is not an option.

This is the simplified version as it's actuality much more complicated than this. If you do have hyperparathyroidism you need to be treated by an endocrinologist who wiil know the how to diagnose this conditionand the best treatment options as well as the correct dosages for supplementation as there are inherent risks associated with taking higher doses.

I am not a medical professional so any inaccuracies of the above are mine.

Barb
 
The low vitamin D and high calcium levels seen in hyperparathyroidism are the result and not the cause of the condition. Therefore, taking these supplements as a preventative measure is not addressing the underlying cause.

Supplementation is usually started after surgery. Sometimes medications can help if surgery is not an option.

This is the simplified version as it's actuality much more complicated than this. If you do have hyperparathyroidism you need to be treated by an endocrinologist who wiil know the how to diagnose this conditionand the best treatment options as well as the correct dosages for supplementation as there are inherent risks associated with taking higher doses.
The function of the parathyroid (via PTH) is to release calcium from the bones and increase absorption in the kidney and gut. It also increases conversion of vit D to the active form which further increases calcium absorption, and drops vitamin D levels.

Basically, one common underlying cause of hyperparathyroidism is along the lines of inadequate calcium, because of inadequate intake or absorption. It can also be caused by kidney failure, cancer etc, but that's really OT.

Increasing intake of vitamin D and calcium will reduce PTH and parathyroid activity. There's potential side effects like elevated calcium, but it can be done. I think that jumping straight to surgery is premature.
 
The function of the parathyroid (via PTH) is to release calcium from the bones and increase absorption in the kidney and gut. It also increases conversion of vit D to the active form which further increases calcium absorption, and drops vitamin D levels.

Basically, one common underlying cause of hyperparathyroidism is along the lines of inadequate calcium, because of inadequate intake or absorption. It can also be caused by kidney failure, cancer etc, but that's really OT.

Increasing intake of vitamin D and calcium will reduce PTH and parathyroid activity. There's potential side effects like elevated calcium, but it can be done. I think that jumping straight to surgery is premature.
I think you might be getting yourself a little muddled here; you are referring to a condition known as secondary hyperparathyroidism where the body and parathyroid glands are functioning normally and are reacting to either hypocalcemia, low vitamin d or something of the sort and are producing lots of PTH to try and correct the underlying problem (by either drawing calcium from the bones to increase blood calcium levels or increase the conversion of inactive vitamin d to active.) This is secondary hyperparathyroidism however I focused this article mainly upon primary hyperparathyroidism which is when there is an adenoma (tumour) in one or more of the parathyroid glands which leads to it producing vast quantities of PTH without any biological need. This production of PTH therefore leads to calcium being drawn out of the bones when there is no hypocalcemia hence leading to hypercalcemia and also weakening the bones as the bones are constantly being depleted of calcium. Giving people with primary hyperparathyroidism vitamin D and calcium would in fact be very dangerous as it would increase an already out of control calcium blood level more both directly through the absorption of calcium and also indirectly as vitamin d increases the absorption of calcium in the gut (there are hypotheses that relate low vitamin d in primary hyperparathyroidism to a bodily response purposefully lowering it to prevent the absorption of calcium to try and stem the out of control calcium levels.)
 
Increasing intake of vitamin D and calcium will reduce PTH and parathyroid activity. There's potential side effects like elevated calcium, but it can be done. I think that jumping straight to surgery is premature
.

There are different forms and degrees of hyperparathyroidism so treatments may differ. This is why it's important to have an endocrinologist involved.

Barb

ETA
Looks like Andrew and I crossed post.
 
Last edited:
It is a decent site for diagnosis, however the big problem with it is that it is almost an advertisement for surgery. It should also be possible to treat elevated PTH with generous amounts of calcium and vitamin D/K (as I've done personally).
Re treating raised PTH levels(very high in my case)with calcium.... I believe Dr Norman states on his site that that it is very dangerous(could possibly kill one/calcium levels can spike)if one has a tumour(adenoma)...It is ok after the tumour is removed....
 
Last edited:
As hyperparathyroidism already places too much calcium in the blood stream, it would be foolish to take more. I was told the only treatment option was surgery.


In the UK, the calcium and parathyroid hormone levels are not routinely checked on the NHS In those with M.E and fibromyalgia, despite the symptoms being so similar, I only found out I had hyperparathyroidism because of private tests.
 
Re treating raised PTH levels(very high in my case)with calcium.... I believe Dr Norman states on his site that that it is very dangerous(could possibly kill one/calcium levels can spike)if one has a tumour(adenoma)...It is ok after the tumour is removed....
This is what Dr Norman's site states...
Should I be taking calcium pills before the operation if I have osteoporosis?Absolutely not. If you have hyperparathyroidism you should not take calcium pills. In fact, you should avoid high-calcium foods (like milk and cheese). Even if you have osteoporosis, you should not take calcium pills or a multi-vitamin if you have hyperparathyroidism. This will make you feel worse or could actually trigger a high calcium spike that can trigger a stroke. YES, we have seen people get a stroke because their doctor told them to take calcium pills for their osteoporosis even though they had hyperparathyroidism. AFTER the operation you should take lots of calcium so your bones can return to normal... but NOT BEFORE! Similarly, you should not be taking vitamin D! We have an entire page on Vitamin D. If your calcium is high and your vitamin D is low, then you should NOT be on vitamin D until after your parathyroid tumor is removed. Read more about Low Vitamin D here.
 
[...] primary hyperparathyroidism which is when there is an adenoma (tumour) in one or more of the parathyroid glands which leads to it producing vast quantities of PTH without any biological need. This production of PTH therefore leads to calcium being drawn out of the bones when there is no hypocalcemia hence leading to hypercalcemia and also weakening the bones as the bones are constantly being depleted of calcium. Giving people with primary hyperparathyroidism vitamin D and calcium would in fact be very dangerous as it would increase an already out of control calcium blood level more both directly through the absorption of calcium and also indirectly as vitamin d increases the absorption of calcium in the gut (there are hypotheses that relate low vitamin d in primary hyperparathyroidism to a bodily response purposefully lowering it to prevent the absorption of calcium to try and stem the out of control calcium levels.)
Here's a couple of studies that show that vitamin D and calcium both lower PTH in Primary Hyperparathyroidism.
The effects of calcium supplementation to patients with primary hyperparathyroidism and a low calcium intake.
Prolonged treatment with vitamin D in postmenopausal women with primary hyperparathyroidism.

I think the more reasonable hypotheses is that PTH increases conversion of 25OHD to the active form, attempting to increase calcium absorption, thus reducing 25OHD levels and causing a deficiency. People typically have normal/high 1,25(OH)2 D even if they have low 25OHD.

Yes, I understand that the elevated serum calcium is a problem and a risk. Nonetheless it should be doable, especially under a doctor. But it's hard to find a doctor willing to try things like this ...

Additionally, there are ways to reduce that serum calcium.
 
Last edited: