Primary, Secondary & Tertiary Hyperparathyroidism

The paragraphs below (my italics throughout) are taken from Clinical Medicine by Kumar & Clark - an early edition admittedly:

"Primary HPT is caused by single (80%+) or multiple (5%) PTH adenomas or by hyperplasia (10%). PTH carcinoma is rare (2%) though usually with severe hypercalcaemia."

"Secondary HPT is physiological compensatory hypertrophy of all four parathyroids due to hypocalcaemia (eg in renal failure or Vit D deficiency). PTH levels are raised, but calcium levels are low or normal; PTH levels fall to normal after correction of the cause of hypocalcaemia."

"Tertiary HPT is the development of apparently autonomous parathyroid hyperplasia after long-standing secondary hyperparathyroidism, most often in renal failure. Plasma calcium and PTH are both raised, the latter often grossly so. Parathyroidectomy is necessary at this stage. "


Dee - I noticed from your reply to Lucie that you are going through the Vitamin D hoop at the moment. I applaud your "deal" with your GP because the more the merrier as far as blood tests are concerned to facilitate diagnosis from whatever pattern emerges.

I think these medics insist on us taking the Vit D test because the think we have secondary hyperparathyroidism due to Vit D deficiency. But (see second paragraph above), if this were the case we would have low calcium and not high - and quite severe kidney problems as well. This was the error made by my endo, and she could/would not be persuaded otherwise. When I tried to explain this, she then told me that my calcium levels were normal and not high, and then she pointed out one single calcium reading that was below 2.5 and said "there you are, your calcium is low". I had to just leave the room at that point as I could see I wasn't going to get anywhere.

If I have got this wrong, then I'll be the first to admit it when someone shows me convincingly that I'm wrong about this. But you seem to be saying the same thing, Dee, which makes me feel a whole lot better!

Interestingly, my Vit D dropped by 50% one summer when we had a hot holiday and I took planned 10-minute sun-bathing sessions at home when we had full sun. It looks as though the same thing happened to you.

I was prescribed 50,000 is per day of Vit D3 (yes, per day, what a mistake someone made there ...) in order to do this same Vit D "test". In the end I agreed with my GP that I would take 4,000 iu daily instead, so as not to raise the calcium. Sure enough, my calcium rose whilst I was taking the Vit D to its peak of 2.73.

So weel done for getting that deal in place with your GP before taking the Vit D! I had my Ca and PTH tested every 2-3 weeks in order to get a run of test results. Thank goodness my GP was flexible enough to order these so frequently. I had told him that if he didn't, and my Ca went through the roof, I would blame him!

So, keep us posted on your experiment, Dee - nice to chat here with you again.

Love from Tigerlily xxxx

Ah Tigerlily I just wrote a major rant and then accidently lost it in the ether.

The gist of it was I totally agree with you. SPHT due to vitamin D deficiency (in the absence of some other health issue like kidney failure) is complete nonsense.

So why is it that nearly everyone here has had that diagnosis thrown at them and yet I don't know a single person whose symptoms resolved simply by taking vitamin D? 

Also loads of people have low vitamin D in the winter in the UK why doesn't it cause their glands to hypertrophy?

And, as you rightly pointed out, parathyroids respond to low Ca levels, if they are inappropriately responding at any other level that indicates that they are at fault and therefore the hyperparathyroidism must be primary.

It seems so simple yet I have not heard of one single endo in the UK who hasn't been blinded by the myth of sHPT caused by low vit D. I find that really frightening.

In other news, I paid for a DEXA. Found a company in Bristol that do it for £75. Bupa was around £400, Spire healthcare was about £200. Like your ultrasound peeps the level of customer service was great and although they had to rumage around for the forearm bracket which the lady had never needed before they did it for me. I had to justify to the doctor that the reason I wanted the forearm as well as the hip and spire is because pHPT tends to reveal itself in the cortical bone before the cancellous. He was happy with that. Just as well I did push for it as my forearm is showing mild osteopenia (-1.1). Hip and spine both currently ok which is great and makes me think I have managed to catch this fairly early.

I have been reading everyone's updates just not seeming to get round to posting much. January felt very overwhelming - I'm choosing to blame cortisol levels for that. But I have felt much better this month so trying to knuckle down with work so I can play russian roulette with my health next month. 

I'll let you know how my experiments go.

Better post this before I lose it again,

Best wishes to you and your suspiciously high Ca non-related family too - hope you all get some answers.

Love
Dee
xxxx