PMRGCAuk
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Endocrinologist Appointment

Just an update, l spoke to the Endocrinology Secretary on Monday regarding my referral & they rang me back this morning.

There’s a two to three month waiting list on the NHS, only one of the Endo Guys sees patients Privately & only if l didn’t need a raft of tests.

So the Plan is - wait & see if l get an NHS Appointment, in the meantime she’s put me on the Private Clinic Waiting List, next available Appointment 4th July but l have been put on the Cancellation list for 6th June, so it seems a reasonable way forward at this time.

Hope everyone has a lovely weekend, we’re Packing up the house! 📦📦📦

Mrs N 💅🏼

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What is your treatment for Adrenal Insufficiency?

What value will an Endocrinologist add?

You are moving house! Oh my I do not envy you.

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Hi Jane

At the moment I’m on 7.5mg Pred but l have to take things easy & try not to get stressed.

I’ve had a Synacthen Test which proves l’ve have Adrenal Insufficiency, some Endo’s & my Rheumatologist believe I’ll fair better on Hydrocortisone or at least have Hydrocortisone as a back up if l became unwell in a stressful situation.

The move is being done in stages, all my lovely precious things are already in Storage, along with most of my shoes & handbags of which there are many!

I just pack a box & sit down, we were suppose to have a full packing service but I’m getting most of it packed myself, l may well be leaving the house the day before & going to an hotel but we’ll see how l am but l can always have extra Pred for a couple of days to see me through.

Have a lovely weekend, apparently the sun is going to shine 🌞

Angela xx

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Hi Angela, Sorry for all the questions, I am wondering what would happen if I end up in the same boat. It’s possible with my history of Thyrotoxicosis on top of the present PMR. I know that it is sometimes treated with Pred, I didn’t know that there were drugs that could mimic the Adrenal gland’s ability to respond to stress. Or possibly you take more. I am surprised that they are not treating this with any sense of urgency.

I hope your move is a very positive one. Any kind of sorting, packing, de-cluttering has me lost down memory lane. Not efficient.

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Hi Jane

I think I’d have to be in an Adrenal Crisis to be treated Urgently so while I’m on 7.5mg l’m kind of hanging in there.

Hydrocortisone is short acting & mimics the adrenal glands more but has to be taken 3xtimes per day but is the preferred treatment by some Endocrinologists.

They give you IVHydrocortisone in Theatre if you’re having a major surgery or any kind of Medical Crisis as is faster acting. I’m no expert & I’m sure someone else can explain it better than me.

So for now I’m taking it easy & if l did suspect l was having any kind of issue I’d double my Pred & get myself to A&E

Angela xx

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Hello Angela. I waited 3 months to see Endo after the test last May. . I am seeing him again next Tues. I demanded to be taken off HC, and returned to Pred. I was close to insanity with HC. Hope you fare better.Am on 7mg at present. I still have no fatigue, and , apart from the blood tests, wouldn't have known anything was the matter with me.

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Hi Karools

Three months sounds about standard, sorry to hear you had a bad time with the HC we just never know how we’ll react, do we? When I had Chemo l was put on Dexamethasone prior to the Chemo & three days afterwards, I was unbelievable cheery, l never slept, l bounced around, did a lot of online shopping, spike at 70 miles an hour & promptly returned to ‘normal’ after it finished each time, the The Chemo side effects kicked in! 😱

I’ll let you know when I get my appointment & how l get on.

Enjoy the Sunny 🌞 weekend.

Angela xx

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What kind of side effects did you have with the HC? Thanks.

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Well, first of all, the most horrendous stomach aches, as if my poor tum was going to drop out.As time went on, and I tried to persevere with the doses, I noticed I was more than just forgetful, I was behaving oddly? After 3 months, I told the Endo I refused to continue with HC, and wanted a return to Pred. Today is my Endo appt. We'll see what transpires.

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Thank you. Oh good luck with the appointment!

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Good Luck today 🍀 Let us know how you get on xx

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Best of luck MrsNails! I do hope you get in sooner rather than later! ...and good luck with the move! *sigh* I'm happy we have put out York move on hold... just thinking of what you are going through stresses me!

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Hi Mamici

Thanks for the good wishes, I’m taking it steady & hope the move goes smoothly, we will be living closer to our Son & daughter in law when we move & they are having a baby in early July so we won’t have those long car journeys back & too, so l feel it will be a very worthwhile move.

Have a Lovely Weekend

Enjoy the Sunshine 🌞

Angela xx

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Ohhhhh how lovely! I'm so happy for you!

That was out plan when we were considering York; we'd be closer to my daughter and Max! ...bit my husband still works and I don'y think he's ready to give that up yet. : (

So... trips to Manchester will continue for awhile.

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Morning

I love the name Max 💙 no suggestions are being accepted by Son & DIL but l think a short 1st name would be good as Baby is going to have a double barrel surname as DIL kept her Surname.

Have a good weekend 🌞

Angela xx

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Yes, I had no say either... Although I did suggest Charles (Charlie) after my brother, and he is named Max Charles... so I'm happy! : )

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Think Max is a fabulous name 💙

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The sunshine was fab today! How exciting about the new baby and what an incentive! I’d be there like a shot. That Dexamethasone sounds like something I am lacking these days. You’ve been through so much and yet always sound upbeat. You’ll be an amazing granny.

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Morning Jane

I rather fancied being Glam-ma 💁🏻‍♀️ but have decided on Nana & Papa for Husband as it’ll be easier for baby to say 👶🏻

Hope you have a lovely weekend 🌞

Best Wishes

Angela xx

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Sorry to intrude but enjoying the baby chat, we're Nanny and Pops! So exciting times ahead for you feel a little bit jealous as miles away from mine so your move talk also makes me think - but never mind the sun is shining and it makes so much difference.

Hope the move goes okay and you get your hospital appointment soon.

Sunny days ahead

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Hi Telinho

Not intruding at all, we’d decided a while ago to move but not necessarily so close to Son & DIL

We don’t have any close family nearby as our other Son & DIL live in France but we’ll be nearer Heathrow, so it makes sense really.

Have a lovely weekend 🌞 Hope you are doing well?

Angela xx

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Thank you Angela

I see, it does make sense, good planning I'd say.

it gets harder as time goes by though, I can just about cope now but not able to 'gad about' as before. No 1 son lives in Tingley, West Yorkshire and I haven't driven to him since illness - feel the journey is too long a drive now and would be dangerous for me getting over tired even with lots of stops - no 3 son does that so we still go.

No 2 son lives in Oz and haven't made that flight since diagnosis but never rule it out, it's hubby he's the one can't make that long haul flight anymore - but never mind they are coming over for Christmas - exciting times ahead...

You have a lovely weekend too and enjoy this beautiful sunshine.....

Terri x

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Hi Terri

I can’t gad about anymore either, l also find long car journeys tiring & my knees stiffen up! I’ve hardly driven since l retired but keep my car in the garage & get it out high days & holidays, it’s a convertible so it’s ideal on a sunny day!

My eldest Son went travelling & stayed a year in Oz that’s where he met his now wife, she’s a Brit from only 60 Miles from where we live!

It’s a long old flight to Oz whichever way you do it. It’ll be amazing to have them all home for Christmas. We met some people on a Cruise who fly out to see their Grandchildren in NZ but Sail Home 🚢 not a cheap option but it suited them.

I’ll drop you a Private Message later as l see we’ve both had Breast Cancer.

Catch Up Later

Angela xx

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Look forward to that Angela, sorry for not getting back sooner, it was you I was sending a reply to when the debacle with the system began - all done now though, and yes it will be fantastic to have them over again, they're coming over every two years at the moment so can't grumble, takes a lot of organising when you're not retired - getting time off work and saving up!! Always worth it though.

Like the fly/cruise option...

Speak later

Terri x

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It CAN get better - I am just home after driving 2,500 miles from here to the UK, round it and back in 19 days. I did all the driving this time - sometimes I get to a couple of hours from the hotel and I say " Sod it...". Didn't happen this time! But we don't plan a drive of more than 6 hours (I'd do 4 but that would mean 3 nights each way). This time 1 night each way was ferry to/from Hull which saved a dollop of driving as we weren't visiting the south. The car is unloaded - the washing is still in a suitcase...

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Oh, very well done, bet you’ll be glad to put your feet up & relax. Hope you’ve enjoyed your visit & caught up with family & friends.

Leave the washing where it is, you can do that another day.

Best Wishes

Angela x

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Wow, well done you, hope you had a great time and not too tired - the washing can wait until your second breath comes along then wham it'll be done.

I appreciate your encouragement and although it might have sounded like it I'm not a half glass empty person - as I've said plenty of times I never say never and as you say it can and will get better, not giving up by any means. Hubby is the major consideration, I used to make plans and we went everywhere but I've got to be realistic now , it's too stressful and with his dodgy ticker... but that's another story...

Thanks PMRpro

PS which parts of the UK did you visit this time?

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Oop north - someone you all know had a special birthday and so we added on both daughters as well. Started at Hull, reached Edinburgh and Preston. I'm so glad it is warmer here though!!!!!!!

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Oop North eh! I'm an oop north person, not that far north though, you certainly put in some mileage, bet it was fantastic with your daughters as well.

...take it Happy Birthdays to you are in order? keeping that a little secret aren't you?

HEAR THAT FOLKS - someones had a special birthday without telling us!

Mind you I've got one too this year and I won't be telling when either!

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No, not me, jinasc who lives oop north, north of one of my daughters and south of the other, and there were greetings to her on the forum on April 24th! I do usually spend my birthday in the UK - didn't last year and won't this year either as we may be back in October/November too. Three times would be too much of a good (?) thing.

Where are you? Can't remember if you have said.

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Obviously I was away that day, belated happy birthday jinasc!

Three times eh! whatever you feel like. That's the trouble when family are scattered far and wide. I've got a 'special one' this year so will be spreading the celebrations over a time to enable seeing everyone, I usually hold a big bash at home but am not doing it this year, I happily do anything for anyone else but not for me I'm a giver not a receiver ... I can't make plans as easily as used to anyway as OH not that clever these days so have taken to having short breaks with my sister who lives in Sussex. Took me a while to do that but need to do it sometimes - but only if no 3 son is around for his father.

I live in Essex, 30 years now, work brought us this way but born and bred in South Yorkshire.

No 1 son lives in Tingley, West Yorkshire so will be going to stay with him after birthday when I will see rest of brothers and sisters (I'm the eldest of 7), another sister is coming down on my actual birthday and no 2 son is coming over from Oz at Christmas, he's got a special birthday too, when we'll all trundle oop north again to No 1 son's again - I like to stretch it out! Have already started my celebrations last month went to the Algarve for a long weekend with sister. In between fitting in seeing treasured friends. Phew didn't realise I was that busy!

On that note I'll leave you to get on with that washing!

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Glam-ma!!!! Love it!!!!!

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We are also hoping one day we will have French Grandchildren but “une nana" in French apparently is a hot babe! 😂

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My granddaughter called me Grand for a while which I like and think I am lol.

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Nice choices. Little ones sometimes have their own ideas. I am granma to my eldest, Nanan to my granddaughter and granny to my little grandsons who have joined the others in Australia. All in an Australian accent which is too cute.

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Thank you for the update....and sorry you have to wait so long to see a specialist.

I’m still waiting to get my synacthen test....it’s been about 6 weeks so far. Oh well, at least we are on the lists 😊

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Hope you are hanging in there, take it easy & hope you get your appointment soon. Might be worth a phone call to see how long the waiting list is.

Best Wishes

Angela xx

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I will see my GP soon to renew my prednisone prescription and I intend to ask him then about the wait time. Unfortuately I can’t ask the specialist side of this......all appointments are funneled through my GP’s office to me.

In the meantime I am keeping my prednisone at a higher amount and enjoying our lovely weather by puttering in the garden....delaying the harder garden chores until I get feeling better. It is nice to slow way down....that should be good for the adrenals too! 🌷🌸

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Just lost my post! Having a funny day with this site today so I won't repeat all again. Just hope appointment comes through soon and move goes well. Your strategy sounds good! Xx

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It’s a pain today, I’ve just lost two replies to Pongo! Speak when site returns to normal! xx

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