MRI approved

Just to let you know that the local Lead Endo has approved the MRI requested urgently by my GP to rule out a pituitary problem, but I'll probably have to wait 6 weeks for it as there is no clinical urgency for it in his view.

Why do I feel that I've not been taken seriously in this? Am I being punished for diagnosing my own PTH adenoma? And other depressive thoughts....

Just licking my wounds here at the moment. Have spoken to PALS and she (same one for some time) seems to have more "bite" than she used to. She recommends I wait until Monday, ring MRI and see if I'm on their radar and then she will intervene to try and get the appointment brought forward. Probably all that can be done for now.

All thoughts welcome - darkened room beckons (again!).

Love Tigerlily xx

Oh for Gods sake. So a pituitary tumour is not a clinical urgency.
Let them have one growing in their head and see how urgent they think it is then.
I'm sorry Tigerlily I can't offer any pearls of wisdom apparently there is something called the Pituitary Foundation I've been told by a friend who's friend has had a tumour removed.
I have the woman's email so I'll drop her a line and ask a few questions.
I feel your anger and I fully understand.
Love Amanda xxxx

Oh, thanks, Amanda - that's a real help.

I had come across their website some time ago, but forgot about it.  I'd be glad to hear what this woman says.

I feel that if it's been taken on board that I might have one, then there is some urgency there in itself, so why not transfer the urgency to getting the MRI scan done, and then if there's nothing there I'll be out of their hair.

I'd be pleased to know if you get a reply.

Love from T-L xxxx

Hi Tigerlilly,

I'm sorry, that you feel that you are not taken seriously and i for one think your go getting, proactive approach is the way you have to be now, so you keep persisting and i think their attitude stinks!!
If the situation was reversed you can bet that endo would gallop as fast as he/she could to some private Doctor some where and get it sorted asap.
Let him/she walk in your shoes for a while, they haven't a clue on how this horrible disease affects some one!!!.

Take Care

Diana x

I don't know what to say. Its is good news that you are getting the MRI but bad news you have to wait 6 weeks wow how much slower can the wheels turn. Hopefully the 6 weeks will pass quickly. You would think with your symptoms it would be asap. Oh lordy don't get me started. Hope you feel better soon. Here's some cats I think you need them today.           Huggs Kathi

Pit tumours aren't seen as emergencies because they are very slow growing and surgery is always a last resort unless they are functioning or large enough to cause problems with the optic nerves.

Surgery is quite a gamble even if you have the best neurosurgeon because the pit makes many different hormones. It's so tiny that taking just a little too much.of the wrong cell out can cause big problems. This is why people with prolactinomas nearly always get drugs to shrink their tumour rather than surgery.

Many tumours do mot show up on scans or scans are misread. You need an MRI focused on the pit with dynamo protocol.

All the best Tigerlily, I didn't mean to sound doom and gloom and hope it's PHPT that is causing your probs rather than the pit.

That should read dynamic protocol.

Hi Tigerlily,
Is this MRI at Addenbrookes or will you discuss this with them on thursday ? as they might want to do this test when they review everything.

You have had a lot of info to take in recently and i know sometimes i need a bit of time to take all of this in. Just be careful if you are having the MRI done local as you know what Addenbrookes might say" it isn't are test" - you also need to hear from Mr P.

lots of choices, which is good.

best wishes

Bit tired today 
Lozza       some cats to cheer you up.

Thanks, Diana - I think it might be the pro-active approach that has sunk me here! I try to be pro-active with humour, so as not to come across too bolshie, but maybe that's the wrong way.

Thanks, Kathi - I need the cats right now !

That's so valuable, Johnny - I think a pit aadenoma is pressing on crucial cranial nerves causing documented sudden-onset double vision needing a 4 prism in glasses, various visual field defects, vertigo with nausea, head-skull-face-jaw-neck-shoulder-ache continuous since early May, hyper-hearing and recently hearing loud sounds that are only in my own head - and I've got a great selection of other endo issues (hypothyroidism, all pituitary hormones low in their ranges, ovarian cyst, kidney cyst, etc.). Prolactin level was middling, so probably not a prolactinoma, although I know they are the most common.

Thanks so much about the hint for the type of MRI - I'm obvs not gonna get that here in the provinces (West Suffolk, Bury St Edmunds). Maybe my best plan will be to w-a-I-t until I can see Fausto Palazzo at the Hammersmith. Perhaps that appointment will come through before the local US anyway.

How are you doing yourself, Johnny? Can't remember if you've been "done" or not, or where.
Post us a reminder, and don't be a stranger!

Best of Wishes, Tigerlily.

Thanks, Lozza - you are right - I need to recoup my energies a bit - sounds as though you do, too.
Thanks for the cats!

I was hoping that Addenbrookes could be persuaded to do an MRI. I will still try and insist on one from them. It will be a more sophisticated one than a local one and I mightl be able to quote Johnny's spec for it as if I'm being "advised". They don't like pushy patients but they've made so many mistakes with me already I might just get it. I certainly don't "want" a pit problem - and as I'm claustrophobic I don't really want an MRI!

Thanks for your input - always appreciated.

Love from Tigerlily xx

All pit MRIs should be dynamic, it just means they give you some contrast after the first pass. I'd just go for what you have, six weeks is about normal I reckon and at least they are up for doing it.

Still searching here, great news on your PTHP diagnosis.

Yes, I'll see how it all goes, Johnny, thank you.

No diagnosis yet for you? So disappointing. How are your bloods looking at the moment?

Best of Wishes, Tigerlily xx

Good luck Tigerlily! 

      Have some cats           

Love and hugs 
Brigitte xx

Sorry you'll have to wait so long for the MRI, Tigerlily.   Just remember, the last time I was not taken seriously, I had 2 parathyroid tumors and a thyroid nodule removed!   Hang in there!    And as cute as the little cats are, I thought maybe you could use an extra boost today.  


Stay strong and fight for what you believe!!

Audrey

That is the best cat ever!

Tigerlily, it's very hard to keep pushing when you feel like people see you as a nuisance and aren't taking you seriously, and then your symptoms drain all the fight too, but don't stop pushing. Like Audrey says, stay strong.

Here's hoping that they say 6 weeks in order to manage patient expectations and that actually there'll be a cancellation or they'll decide to slot you in earlier....then again this is the NHS we're talking about. You definitely need to stay on their radar.

There was a point at which I was tempted to just keep turning up to clinic and politely say, I'll wait in the corner just in case you have a cancellation. Hoping that confronted with an actual sick person they might have some compassion or alternatively just get so sick of seeing me they gave me an appointment. In the end I managed to convert a 3/4mths wait into a 2 day wait just with phoning around.

I'm praying the same happens for you.

Dee x

Well done, Dee - that would have taken some stamina at a time when you least had any to spare. Yes, I'm hanging on in with it. It just seems to have taken over my life trying to get a diagnosis for the last nearly 2 years. I know everyone has the same story of numbers of years, it's pitiful, isn't it?

I sobbed out the whole story to the PALS lady yesterday and she promised to put in a word as well. I'll call MRI on Monday to make sure I'm on their radar (!) and then call her and she'll try and hurry things along. Johnny here explained that pituitary stuff is not regarded as urgent because these things grow so slowly - it's just that the larger slow-growing ones can be quite aggressive apparently, which is why I'm worried.

Thanks for caring.

And thanks to Brigitte for my daily supply of needed cats        !

And thanks to Audrey for her little kitties!!! What a wonderful image, Dr Aud! You must have known that I needed them almost INTRAVENOUSLY today!!! They are just wonderful!!

Lots of Love and thanks for your support everyone from Tigerlily xxxx

Good informative post Johnny,

Tigerlily with the fact that practitioners have misread studies more than once, at least I know it's happened over here, I don't blame you for being vigilante.  We need to be.

Keep us posted. 

xxx,  Nancy