Help/advice for forthcoming visit to GP please?

Hello again, I first posted Feb 2015 under the title 'Lab report says poss primary hypoparathyroidism - Dr says no' and I'm afraid I was rather rude in not posting again with the results of my visit that week to see another Dr in the practice.  The local lab had written on my test results that they suspected possible primary hypo but the dr just looked at it and said "I don't know why they said that and that was the trouble with people asking for test results they didn't understand".  Not surprisingly really I just came home and gave up.  However one year later and with my annual blood tests it all begins again and I'm hoping that you can all forgive my rudeness and help me again!  So basically to recap: high calcium levels, low phosphate for several years now (since 2012), numerous repeat tests, no follow up to any of these tests and PTH only tested for first time January 2015 which was when local endo wrote that with calcium and pth levels as they were, primary hyperparathyroidism needed to be entertained.  Absolutely no action taken as explained above.  Latest test results from February 2016 are as follows:  (should explain here I have annual blood tests for underactive thyroid)

Calcium:  2.53 (2.20-2.60)
               2.61 (adjusted)
Serum inorganic phosphate: 0.60 (0.80-1.50)
Serum albumin: 34 (35-50)

No vit D or PTH tests.

Recalled for high calcium levels (again!), results of tests dated 7/3/2016:

Calcium:  2.48
               2.54 (adjusted)
Phosphate:  0.50
Albumin:     35
Vit D:          22.4 (50-150)
PTH:         7.5 (1.5-6.9)  with another comment from lab consultant "Inappropriately high for adj calcium, compatible with primary hyperparathyroidism"

My dr did reference this comment but said that the consultant at the metabolic bone clinic would only prescribe high doses of vitamin D so she might as well do that herself.  Follow up tests after 10 weeks of high dose Vit D show my levels as being normal (58.1) with no further action required.  My calcium levels after this test were 2.50/2.56 adj., phosphate 0.6, PTH not tested again.  Clearly she is only interested in Vitamin D levels but is she right in this?  Surely to get the full picture my PTH levels should have been tested?  The only symptom that abated during high vit d medication was early morning depression (which was good - every little helps!) all others - fatigue, muscle pain, joint pain, poor memory, constant pee-ing, dehydration, stomach pains - and now apparently high blood pressure - remain.  I have an appointment this Thursday and plan to ask for a referral, I just know she will refuse and I guess I would just like some reassurance that its not all in my imagination, or its my age, or - the best one yet - that I should just hoover one room at a time???!!!

Thank you for taking the time to read this rather long winded post and look forward to some advice/input.

Best,
Annie

Hi Annie

Don't worry about not getting back to us last time, members are welcome to pop in and out whenever they feel the need.

So your results are showing a problem and you need to see an experienced Endo, one who knows about parathyroid disease. High dose vitd is unlikely to fix you in the long run, calcium levels will rise and fall so the last test may just have caught it on a lower level but your pth is still too high, which is not right and proves there is a problem.

You do need to push for a referral but do some research and find the name of a good Endo to give your GP, he/she can refuse to refer if they think its not clinically necessary so you may have a fight on your hands. The other option is to self refer to a private Consultant Endo, some will want a GP letter some are not bothered, I referred myself as my GP was being unhelpful.

You aren't imagining it and I don't think cutting back on the hoovering will help you either, thats a classic

Do keep us posted on how you get on and good luck.

Nelly

Thanks for replying Nelly, glad you think I have a case.  Have been recommended to a Dr Paul Jenkins at The London Endocrine Centre who is also consultant endocrinologist at Barts in London and who specialises in thyroid and parathyroid disorders or I can see privately the local consultant who is the Doctor who always comments on my PTH levels on my blood test results.  I think both will see me without a referral from my GP.  Am loathe to ask my GP for a referral when she clearly doesn't think I need one - wouldn't the referral be biased towards her train of thought?  

Haha no I agree, but I've taken her advice on board and cut all hoovering out now!!

Annie

Hi Annie

I am an old member of this forum who hasn't posted for a while, but I have noticed your original post and this thread.

How are you doing? Have you decided where to go next? Do keep us posted on your progress.

Love from Tigerlily x