Parathyroid Help? :-(

[Essex21]

Hi all,

I had my long awaited Endo appointment yesterday, it didn't go as well as expected I had to push for the referral as I have had elevated calcium levels for a long time and fluctuating PTH ranges. My hope was to be able to get to see an Endo and get him to look at all my blood tests over the past year, show him my symptoms that I'd printed from the Parathyroid.com website and also make him aware that no matter what website I read, elevated calcium isn't normal and it's usually down to a Parathyroid Adenoma. The typical scenario is fluctuations of these levels hence why people go years without a diagnosis.

I'm not very good face to face with doctors, I seem to forget everything I want to say and feel like I'm at the Headteachers office.

I showed him all my blood results, he agreed the calcium was elevated on some tests. I've recently spent 6 months in Sydney and also had tests done there, I showed him those results too but his reply was "they use different ranges" it was actually while I was in Sydney that my PTH hormone level had doubled. Surely a lab range is a range, no matter where you are in the world, surely my results are significant?!

It got so bad with being ignored by the doctors that I downloaded the Calcium Pro App on the Parathyroid Website, put all my results in and my result came back as "very likely" to have a Parathyroid Adenoma, how on earth could I present that to a specialist, I didn't, I felt he would laugh in my face.

I asked whether the 2 very small cysts I have on my Thyroid Gland were a problem and was told that's normal, I only had 1 cyst back in October, I now have 2.

Basically, the appointment didn't go well and it was only because I burst into tears after he threw the depression/anxiety card at me that he decided to pick his pen up and ask my history and family history and write some notes. He's sending me for a blood test for Addisons Disease which he said himself he thinks will be negative. I was told I have a weak positive ANA result which at this moment in time, just needs testing again in 6 months time.

I'm tempted to write a letter to him and just get my point across, I just want someone to look at all my results, listen to my symptoms and put it all together, so disheartened of being made to feel like I'm imagining everything and I'm perfectly normal. I won't give up on this. Now I have to decide whether I want to go Private, which I can't afford or do I wait until I've had the Addisons Test, wait for that to be negative and be back to square one. Feeling very deflated.

Any opinions would be great. Thank you

[LouiseRoberts]

Sorry you had no replies, your question seems to have been missed - hopefully someone will pick it up from Latest Activity...

L

x

[Hidden]

Hi Essex21. I know virtually nothing about the Parathyroid but would say that your absolutely right when you say it does not make sense that your doctor would say that they use different ranges in Sydney. This would only make sense if the test results from Sydney only came back with a statement of over or under range, but surely the tests came back with a unit of level and then a range to which to compare it to, what would it matter what the doctors in Sydney consider to be the ideal range, a unit of measure is a unit of measure.. Whatever unit of measurement they use, even if it were different it would equate to the same here, even if some simple maths need to be applied to convert the unit if they did happen to use a different unit of measure.

One thing to consider though which may have had an effect on your levels whilst in Sydney is that it is sunnier in Sydney, therefore your body would probably have elevated vitamin D levels which could also have an effect on your calcium levels. I'm not sure how this would equate to higher PTH levels or whether in fact it should reduce it but if it were me I'd be interested to see if the levels drop to what they were before the Sydney trip as there could be some connection. Obviously you have something going if your levels were always high before so it may not make any difference to how you tackle the problem but it may help with proving a diagnosis or even just additional information that you could use to help reduce your symptoms.

[Meltedwellies in reply to Hidden]

Apparently our gov's advice is adopted from Aus to 'not go out in Sun without protection'.

But the risk is higher down under, still they're deficient too - especially one area, can't remember which - I wonder wot the Aborigines use? (shade). Dubai and Iran are deficient as they totally cover up.

Don't the paras turn up when needed?

[helvella Administrator Thyroid UK in reply to Meltedwellies]

When I was near Dubai, I felt that the sun didn't seem as fierce as in the UK! Very, very hot in the summer - but not as burning.

Always wondered quite why. Thickness of atmosphere? Dust and haze (which seemed to cover the sky for about 364 out of 365 days - albeit high and thin)? Or because I was usually out of the sun in the middle of the day?

Rod

[bantam12]

Hi Essex

I have along with my husband just set up a new parathyroid forum where you can get some helpful advice and support on hyperparathyroid problems, you are most welcome to join us and we can be found at

parathyroid-forum.forumotio...

hypohen