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A nice GP appt

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A nice GP appt

Post by pilipala on Mon Dec 29, 2014 10:18 am

Dear All,

I hope everyone has survived the stresses of the festive season and have been able to rest up a bit.

I finally went back to the GP and got the bloods done that the endo refused to do in Nov. i was geared up for a battle but it was actually a very pleasant appt. The post-christmas queue of patients did not occur, it was actually the quietest I've ever seen the practice and as such all the staff were cheerful and chatty. The receptionist actually asked me to choose who I wanted to see, which has never happened before.

The Dr was happy to do all the necessary forms. As well as the bloods I asked for a copy of the letter the endiot sent them following the disasterious appt in Nov. I was worried it would make me angry but actually it deeply amuses me. Some highlights...

'Diagnosis - probable secondary hyperthyroidism with multi symptomatology'
'She is completely obsessed with the notion of this being normal calcaemic hyperparathyroidism and I explained that this is not the case'
'However I have explained to her at length that these mild perturbations in the PTH would not explain any of the symptoms. Indeed the normality of the PTH would refute the diagnosis of normal calcaemic hyperparathyroidism which again I explained to her at length.'
(He makes a number of factual errors about my iron prescription and ionised calcium result which he claims was low when actually it was over the top of the range.)
'She was tearful during the consultation and I am a bit suspicious that there is an element of depression/anxiety to play in all of this.'
'I would not feel the need to measure PTH or vitamin D concentration again and have given her some simple advice'

He's such a hero isn't he? Taking the time to explain to me AT LENGTH how foolish and ignorant I am. What a star. I should point out that the normality of the PTH that he refers to is the fact that sometimes it is within normal range and he's happy to ignore the times when it isn't. I have no idea what the simple advice he gave me was. I'll have to listen back to the recording. 

If the bloods I have done today come back within range I still might struggle to keep the GPs on board but at least they haven't bothered paying any special attention to his letter which was my main fear. So all in all I'm pretty happy with that. I'll celebrate a small up on the diagnosis rollercoaster whilst I can.

Wishing everyone better health and good appointments for 2015,

Love
Dee

pilipala

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Re: A nice GP appt

Post by Tigerlily on Mon Dec 29, 2014 6:03 pm

Just a quick reply, Dee, to say that I hope you will be able to keep your GPs on side, and I'd be interested to know what today's bloods come back like.

Also, I think your idea of a team of post-op newly un-brain-fogged PTH advocates is a superb idea! My sister-in-law has very similar symptoms to me when I had primary PTH, so I may be going down that route with her soon. I'll let you know how it goes.

I know I've asked before, but can you remind me where you are located, Dee? Brain fog not totally lifted just yet!

Love from Tigerlily xxxx

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Re: A nice GP appt

Post by pilipala on Mon Dec 29, 2014 10:49 pm

I'm in South Wales.

I'm terrified my freaky body will keep churning out inconsistent results and the bloods will yet again come back not clear enough for a diagnosis, but I'll keep you posted. Good to hear hearing your updates too from the other side of the op.

Lots of love,

Dee

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Re: A nice GP appt

Post by Tigerlily on Tue Dec 30, 2014 1:13 pm

Hi Dee

Do you know of a David Scott-Coombes at University Hospital of Wales, Cardiff?

I think he is an endo surgeon and he was on the original list of surgeons experienced in minimally invasive PTH surgery compiled by Simon, the founder of the previous forum to this one.

Just an extra bit of information for you in your area. If you could find out which local endo's work in tandem with him, or refer patients to him, you might be able to get a second opinion on your case.

Let us know what your current blood test results are when you get them back. In my view, it's the very inconsistency of the calcium and PTH levels that are a valuable pointer to a diagnosis of pHPT.

Love from Tigerlily xxxx

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Re: A nice GP appt

Post by pilipala on Tue Dec 30, 2014 1:34 pm

Yes, I contacted DSC a year ago to ask for advice. He said I needed to get a referral to an endocrinologist first to get a diagnosis and told me that the endos in Cardiff were the best! He went on to name the endiot I saw in Nov (the one who told me that he never wanted to see me again.) If I get some more evidence from bloods I might go back directly to DSC, but have to say my experience so far has undermined my faith in his judgement somewhat.

I definitely agree the inconsistency in blood levels is what they should be looking at.Shocked

Best wishes,

Dee

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Re: A nice GP appt

Post by Tigerlily on Tue Dec 30, 2014 2:34 pm

Oh, dear, Dee - how about trying the other endo he mentioned (if he did) ?

It's so tiring all this, isn't it? And there is a definite tendency to want to give one's local medical team the chance (and all the clues) to come up with the right diagnosis. I spent over 2 years trying to get an endo on side, and never did manage it. I went through 2 endo's and their registrars and a number of other consulting physicians, rheumatologist, gastro-enterologist, etc.

At the end of my rope with it all, I decided to see FP privately (£250) and let him decide himself. He wrote back to my GP suggesting that he refer me back (on the NHS) to him at his Hammersmith Clinic - and the rest is history! I know we should not have to pay for the privilege, but paying for the first private consult did at least get me an immediate appointment and the elusive diagnosis from someone who knew what they were talking about.

Do you fancy a couple of days in London in the New Year?!!

Love from Tigerlily xxxx

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Re: A nice GP appt

Post by pilipala on Wed Dec 31, 2014 2:14 pm

I'll definitely consider it. The complication is that I won't be able to  make a subsequent NHS transfer. We don't have choose and book in Wales I'd have to make a special application to be treated in England.

The GP previously told me that these applications are never approved and I know from the local news that there are patients in a far worse situation than myself who have fought and fought unsuccessfully to be transferred. It's quite a shocking situation and since the local consultants disagree on a diagnosis they're not going to support treatment elsewhere. I would probably have to try going to my MP for help. Although it would be far quicker just to move to England which I have considered doing quite a few times.

So yes, I may well make a trip to the big smoke in the near future.

Lots of love,

Dee

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Re: A nice GP appt

Post by Tigerlily on Wed Dec 31, 2014 3:13 pm

Goodness, Dee, I didn't realise it was so complicated. I can see now why you are having to stay local.

For info, it would have cost £7,500 if I had had the operation privately: £2,500 for FP, £500 for the anaesthetist and - wait for it - £4,000 for an overnight stay in a private room in the same hospital that I had the op in on the NHS. (Cheaper than moving house, I suppose.)

I'm going to list all my Ca and PTH levels in another post (when I can get them all together) as it might be interesting to compare my inconsistent levels with yours!

Happy New Year to you, Dee - let's hope it brings some new avenues for you.

Love from Tigerlily xxxx

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Re: A nice GP appt

Post by Little Audrey on Wed Dec 31, 2014 5:06 pm

Sounds like you had a GREAT appointment, Dee! That is wonderful! So happy for you!

I never saw any letters my doctors sent to other doctors, but I'm sure they were lovely as well. I never sent a letter to my internist who laughed in my face and refused to look at any material I took with me to my appointments. If I ever decided to do so, I can guarantee that will be very lovely as well!! Twisted Evil

Some doctors are just idiots and have no compassion or common sense for that matter. I have no idea why they ever wanted to be doctors. Must be soley for the money, I guess. How sad.

Again, I'm very happy you found a winner and are getting somewhere!

Audrey

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