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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. Leopardtail

    Leopardtail Senior Member

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    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.
     
    Aidan Walsh likes this.
  2. SSLolly

    SSLolly

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    What comes first, the problem with the thyroid, parathyroid, calcium serum levels, or the ME/CFS?
     
    Aidan Walsh likes this.
  3. Firestormm

    Firestormm Guest

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    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...
     
    Legendrew likes this.
  4. barbc56

    barbc56 Senior Member

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  5. Aidan Walsh

    Aidan Walsh

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    thanks SSLolly :)
     
  6. taniaaust1

    taniaaust1

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    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".
     
    Aidan Walsh likes this.
  7. Aidan Walsh

    Aidan Walsh

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    * 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 :)
     
  8. Min

    Min Senior Member

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    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.
     
  9. Aidan Walsh

    Aidan Walsh

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    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 :)
     
  10. Firestormm

    Firestormm Guest

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    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.
     
  11. Abha

    Abha Abha

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    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.
     
  12. rwac

    rwac Senior Member

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    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).
     
    barbc56 likes this.
  13. barbc56

    barbc56 Senior Member

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    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
     
    rwac likes this.
  14. rwac

    rwac Senior Member

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    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.
     
  15. Legendrew

    Legendrew Content team

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    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.)
     
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  16. barbc56

    barbc56 Senior Member

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    .

    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: Aug 19, 2014
  17. Abha

    Abha Abha

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    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: Aug 20, 2014
    Min likes this.
  18. Min

    Min Senior Member

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    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.
     
  19. Abha

    Abha Abha

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    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.
     
  20. rwac

    rwac Senior Member

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    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: Aug 20, 2014

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