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Seeing Jasmine's Dr Miles Levy

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Seeing Jasmine's Dr Miles Levy

Post by Tigerlily on Sun May 04, 2014 10:08 am

Hi Everyone

I bit the bullet this week and laid all my information about pHPT and possible pituitary disease before my doctor (again ...) and asked him to refer me to Dr Miles Levy in Leicester.

It would have been July/August for an NHS appointment so it seemed reasonable to pay the £150 for a private initial consult to try and get some sort of diagnosis, as everyone at the hospital assured me that it would be possible to revert back to the NHS for further tests and treatment if necessary.

I have done weeks of research in order to be able to whittle it down to the relevant stuff for the doctor to send with his referral letter. I must have been having a reduced mental fog day or something, as I was able to explain it all quite coherently to him, which is not usually the case. When I called Dr Levy's private secretary earlier she told me to make the appointment with the appointment team and just get the doctor's letter sent over in the meantime.

I didn't realise it would be so straightforward, and I can't be more grateful to Jasmine for encouraging me to take this route. I am right behind her at the moment, in more ways than one, and if I have to have any treatment I will seek out Fausto Palazzo at Hammersmith - on the NHS, but I will at least have had a diagnosis one way or another from Dr Levy.

If you check out Dr Miles Levy's pages on either the Spire Leicester Hospital or the Leicester Royal Infirmary website, you will see that he a special interest in pHPT, pituitary disease, and a lot of other endo disorders (PCOS, headaches, etc) - although you have to wonder how much sense you are going to get out of someone who plays in a rock group called "Suzy Goes Commando" and actually lists this fact as an interest/hobby!

No, quite the reverse - someone with that sense of humour sounds just like my kinda guy!!

So, I am feeling much calmer about it all now that I know I shall be able to speak with someone soon who knows what he's talking about. I've been going at this for so long now that I've begun to doubt my own research cyclops because anyone I've presented myself to and explained the symptoms to seems to have just told me what they think I don't have, but never gone further than that.

I've said it before, but most of us here are able to be our own advocates, and I really feel for the people who, for whatever reason, cannot, and are getting the same response as I have had - mostly, you can't have pHPT because your calcium isn't high enough ... etc.

Have a restful weekend, Everyone, and there'll be a mass clattering of hooves audible again on Tuesday, when we all get back on our horses and gallop onward again together!!

Love from Tigerlily xx

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Re: Seeing Jasmine's Dr Miles Levy

Post by lozza on Sun May 04, 2014 6:54 pm

Hi Tigerlily,
I wish you all the best, this guy sounds good. I  always think if they can show they are human as well, this certainly helps, must admit i prefer seeing people with a sense of humour.


Your plan sounds excellent, as you say all you need ( like most of us) is an endo to confirm things and than you can make choices. 

please let us know how it goes, I am giving Cambridge one last chance to sort themselves out, otherwise i will be going else where.

I know we have a slit of surgeon, but do we have a list of endocrine people who don't take years to tell us what is going on?
This list would be useful as a guidelines, ok, i know we are all different, which can explain some delay, but it does seem very common with endocrine people.

best wishes

Lozza

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Re: Seeing Jasmine's Dr Miles Levy

Post by Lucycatnaps on Sun May 04, 2014 7:13 pm

Hi Lozza,
You have just made me smile with your typo for a collective noun for surgeons and very apt it is too, hehe 
A slit of surgeons..........hopefully our necks.
Sue
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Re: Seeing Jasmine's Dr Miles Levy

Post by lozza on Sun May 04, 2014 7:28 pm

Hi lucy,

Thanks for letting me know, i will leave the spelling Mistake in as it is quite funny, but not intended. Can't spell at all!
 i seem to remember Mac the knife said " he was just a plumber" perhaps we should ask Surgeon and endocrine- " what trade best describes you ?" and see what they say.
best wishes

Lozza

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Re: Seeing Jasmine's Dr Miles Levy

Post by Tigerlily on Sun May 04, 2014 8:24 pm

Hi Lozza - great slit of the tongue (!!) I love it - and I transpose letters in words all the time when writing!
Thanks for your good wishes about the Dr Miles Levy Plan - I love him already, too!

I salute you for giving Cambridge another go. I've been doing that for over a year now. But you do, don't you? As a patient, you think this really cannot be happening, can it? My endo can't really not know that there is something such as Reverse T3, and surely they would not dismiss me so abruptly for asking why they have not replied to a letter from my GP who had diagnosed me with pHPT (who has now left the practice, but who was known to the endo concerned personally..........).
My husband was with me at the time when she gave us something akin to the bu-'s rush, and I found out afterwards that she had some personal problems of her own. I sympathise always but
hey, that did me no good whatsoever to wait 4 months to see her again whilst she sorted herself out. She was much sweeter the next time - but still said there was no need to do a 24-hr urine calcium test "not at all necessary" which came back at a level 8 (normal for women is 5 - sorry haven't got units whilst I am here ranting ...) when I asked my GP for this test.
Don't stay too long, Lozza, unless you get what you went there for. You can't be too far from Dr Miles Levy either, can you? If you can get to Cambridge, Leicester can't be too far, can it?

No, he's not paying me to advertise his services! And I'll let you know how it all goes. just some idle thoughts to be going on with.

Love fomr (here we go again ..) Tigerlily  xx

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Re: Seeing Jasmine's Dr Miles Levy

Post by Little Audrey on Wed May 07, 2014 2:08 am

Seems many of the surgeons are blind butchers!!!  Laughing 

Yes, I like the typo up there too! Very funny!

It sounds like Dr. Miles Levy is quite a guy. I do hope he will be helpful to all of you who see him!

I can't add to the "slit" of doctors and surgeons who diagnose quickly without dragging their feet, as all 3 of my doctors refused to diagnose me, and Dr. Norman himself dismissed me the first time I contacted him. Although, Dr. Norman only had 3 sets of labs to consider when I contacted him the first time. My doctors had about 19 sets of labs and still wouldn't diagnose me!

Good luck to all of you still struggling for that magical diagnosis! It will happen!!

Audrey


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Re: Seeing Jasmine's Dr Miles Levy

Post by Meggy on Wed May 07, 2014 10:34 am

Hi Tigerlily, good for you, £150 doesn't sound bad but it really bugs me that you've had to do that. I really hope it pays off. Please don't think the bit I've put below is gloating in any way, I've just been really lucky and hopefully it helps some people to know that there are some good endocrinologists out there.


Lozza, here's one for your fast recognition list; haven't gone that far down the process but my gp referred me extremely quickly and my endocrinologist immediately diagnosed hyperparathyroidism which would need surgery (and I don't think my bloods are excessively high). He is Mr (Dr?) Tarik and works in Boston and Lincoln (and one other hospital but I can't remember which). First dodgy blood test in late December, just had dexythingy scans and more bloods so waiting for my next appointment with him which I think is pretty speedy. See, there are some advantages to living in the wilds of Lincolnshire (please don't start listing all the DISadvantages!)

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Re: Seeing Jasmine's Dr Miles Levy

Post by Tigerlily on Wed May 07, 2014 10:57 am

Cheers, Meggy, no worries- just pleased that you have been diagnosed fast!

Tigerlily xx

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