First endo appointment on 04/03/14 - what shoul... - Thyroid UK

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First endo appointment on 04/03/14 - what should I expect?

25 Replies

I am suspected of having Hashimoto's and my GP has referred me to an endo. I have gone through Choose and Book and selected an appointment for 04/03/14 at 8:45am.

What should I expect at my first appointment? I've read on the Choose and Book site that I may have my neck examined but they can't be spending all that time on just doing that, surely? Also if I keep checking back to the Choose and Book site is there any chance they may have cancellations and I can get seen earlier? Just a thought...

Any help would be greatly appreciated.

Thanks

Jo xxx

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25 Replies
Clutter profile image
Clutter

Endo will look at any labs and history provided by your GP, ought to examine your neck and will take a history from you. Bullet point list of symptoms could be useful to prompt you or to hand over to endo. Diagnosis & meds may be prescribed if enough info is available and follow up bloods/ultra sound scan/x-rays/ECGs (if required) may be ordered to advise your GP on treatment or review at a subsequent consult (if required).

I see my endos in the Joint Thyroid Clinic & the MDT of surgeon, oncologist, MacMillan nurse usually attend too. Head & neck checks are usually done by the surgeon and bp, pulse, stethoscope by endo, and consult is led by endo.

Endo TFT in my clinic includes TSH, FT4 & FT3 and lab runs the tests and any others requested. I have 6 monthly thyroglobulin marker tests to check for recurrence of cancer.

Request that you are copied in on all correspondence sent to your GP and request printouts of test results and lab ranges.

IF endo deems T3 should be included in meds GP is unlikely to refuse to repeat prescriptions.

No experience of choose & book, so can't advise.

in reply to Clutter

Thanks Clutter.

My appointment is so far away, would the GP arrange to have another lot of tests done before this?

I don't think the endo will find anything wrong with my neck as when I feel it there is no outward swelling of a goitre but it is wider at the right hand side than the left.

A MacMillan nurse attends too? Oh dear. :o That's got me nervous. They usually specialise in cancer type things, don't they?

Blood pressure with me is either up or down, pulse fast, slow or combination, stethoscope I've had done but seems to be fine.

Are they likely to advise on weight issues at all?

Thanks

Jo xxx

Clutter profile image
Clutter in reply to

I had cancer so oncologist & MM nurse attend as part of MDT at my consults. They won't at yours.

They can refer you to a dietician or you can ask for a referral. Mine suggested my GP practice refer me to a gastroenterologist but it hasn't happened & I've not pushed practice. Forgot to be honest.

in reply to Clutter

Ok, thanks for your help, Clutter. :) Jo xxx

alangardner profile image
alangardner

hi jo , firstly it would be useful to know the hospital you will be attending ? ....my experience of 2nd choice was that my lady was referred to 'barts' they initially take ALL tests through their own lab [ I don't think they trust some of the others ] they them follow up with the 1st endo/specialist --- usually within 4 weeks -- if you request ALL information that is passed between your gp/hosp/or any other referral [ my lady has been referred to moorefields for reated TED ] will be sent to yourself at all times including a report on EVERY appointment ....in my view excellent ...... if your hospital are as good as ours is so far you don't have a lot to worry about on that score ....secondly do you qualify for patient transport ? ---check with your doctor !!!!! --- I do know as a fact that barts transport patients to and from home for many many miles the process is fairly simple and service is superb .....lastly yes if they have a cancellation they will contact everyone to try to fill the space [ but if the time/date doesn't suit just tell them -- they wont take offence-- ......hope that this helps you alan xx

edysia2 profile image
edysia2 in reply to alangardner

St Barts sucks! Horrible place. I have been treated really badly, so did other patients. My complaints is with an ombudsman now. I will NEVER forget about the horror that I have been through thanks to St Barts. My health suffers greatly thanks to st Barts' treatment. People should be warned about this place.

alangardner profile image
alangardner in reply to edysia2

i can and will only ever state facts from my own experience , and so far my experience of barts has been second to none --- and I have the full facts to back that up ......I'm so sorry that you had the opposite there but would be interested to know who [ miss] treated you...alan

Jow11 profile image
Jow11 in reply to edysia2

Hi I'm sorry to hear about your bad experience at Bart's. could you pm me re who you had the bad experience with? What happened? I was considering asking my GP for a referral to Bart's. Thanks.

Clutter profile image
Clutter in reply to edysia2

Barts successfully treated me for cervical cancer many years ago & saved the life of my b-i-l after he went into a 6 week coma after a brain haemorrage. Sorry your experience wasnt good.

in reply to alangardner

Hi Alan, I will be going to Southmead hospital in Bristol. Not sure who the endo will be for the appointment. I haven't thought about patient transport as my grandparents might be offering to drive me there (which they've always done when I've needed to go to hospital appointments, bless them...) I'll ask my GP at my next appointment, which is on the 27th Jan following TSH follow-up blood test.

I asked my GP about cancellations etc via Choose and Book and she expressed surprise at how long I have to wait and added that they just haven't got the manpower to have an earlier slots. But your reply is very very useful as I can probably go back on there to see if there are any earlier slots. Just seems a long time to wait really.

Thanks!!

Jo xxx

alangardner profile image
alangardner in reply to

i would telephone the hospital direct and - politely- ask if there is a n y chance of an earlier appointment [ always ask to speak to the relevant department ] ...it sometimes works .....there are definite advantages to patient transport --- if you like I will pm you about them....alan x

in reply to alangardner

Hi Alan, thanks for your help.

I'll look into booking an earlier appointment - I guess I would never really know unless I ask! Thanks about the offer to pm me about the info on patient travel. Definitely interested.

Jo xxx

Jackie profile image
Jackie

Hi jo, If you want an earlier appointment, phone the consultants sec and ask for a cancellation. Better still send an e mail letter via the sec putting good reasons , why desperate.

When you go be sure to take a list with you, for your own use.

Jackie

in reply to Jackie

Hi Jackie, thanks for your help.

GP seems surprised at why the waiting list is so long but she says it could be down to the manpower. I've had problems swallowing lately although the GP cannot feel a goitre. I have no email address for the secretary so I don't know how to get hold of it unless I call them first for it.

Jo xxx

Jackie profile image
Jackie in reply to

Hi Swallowing usually only shows on ultra sound of thyroid. GP could send one for that as seems co operative, lucky you !If your voice is still Ok probably OK to wait for the Endo.

Second choice with no e mail,, fax a letter via the secretary. However, first ask the sec. what it is, big hospitals, they can end up any where! Also tell her to expect it. Then when sent, next day, check she has received it.You can send a fax quite cheaply at lots of places, a couple of pounds usually.

With thyroid conditions, especially autoimmune very common for thyroid to be swollen, also nodules. Nodules however small should always be biopsied. However, I would not worry too much as sounds quite "normal".

Best wishes for Christmas,

Jackie

in reply to Jackie

Hi Jackie, thanks for your answer.

If the GP has examined my neck and has not felt anything untoward is she still likely to be as co-operative in sending me off for an ultrasound? Could I add that I was sent for one before a couple of years ago and it's something that's worth checking up on?

I sent an email to the actual hospital and not the secretary but I asked for my email to be sent to the proper department so I hope that's gone through ok. We also have a dodgy phone line but the reception on it seems pretty good at the moment so I could try calling them to get an earlier appointment.

Merry Christmas and Happy New Year!! :)

Jo xxx

Jackie profile image
Jackie in reply to

Hi I am not convinced that will work, may be if lucky. Post etc is notorious for not getting to the right person in a hospital. Certainly letters never seem to.It also needs to be addressed to the Endo by name who you are seeing?? probably all off for Christmas for 3 weeks now, as usual!

Jackie

Jackie profile image
Jackie in reply to

Forgot,

Ultra sound 2 years ago before thyroid a problem, should mean you get another one, live in hope. Other things is make sure it is at a large teaching hospital otherwise often the wrong result!Experience!

Jackie

Ansteynomad profile image
Ansteynomad

There does seem to be a gulf between what should happen and what actually happens. My first endo appointment started with him telling me, before I had even sat down, that he could tell just by looking at me that there was nothing hormonally wrong with me, and went downhill from there. I had another 13 appointments in that clinic in the following four years and no-one ever took a history from me or carried out any form of physical examination. I hope you are a lot luckier than I was.

in reply to Ansteynomad

Oh dear Ansteynomad. I hope I won't get that trouble, although my lifestyle therapist I see once every fortnight has told me upfront I don't look at all well, whilst everyone in my family thinks I look fine. I hope the endo can tell I'm not well and it's not as though I'm a hypochondriac but if I have all these high TSH results and high antibodies results there must be a reason why.

I really feel for you about having so many of those appointments there for them to waste so much of your time and energy.

I'm going out quite far from my home. Although Southmead is the other side of town it's a nightmare to get to via bus - only one of the 4 buses that stop outside our road actually stops outside the hospital itself. Not good. :(

Thanks

Jo xxx

hjane profile image
hjane

Ive had 2 very different experiences with private and NHS endo consultants . My first was locally with NHS and was told he didn't treat Hashimotos until the thyroid failed , regardless of my symptoms ,large goitre included . I felt so awful that I got opinions from other people with hashimotos in different PCT trusts and was told I needed to get thyroxine now . My second endo was private . I took all my blood test results , brief written notes of my symptoms . I also was able to quote NHS guidelines for hashimotos with goitre ( which is thyroxine ) He listened , examined my neck , looked closely at my notes and blood tests then said he agreed with me and put me on 50 mg . A week later I felt a different person . Unfortunately I have other symptoms as it was left for so long ...4 yrs ..but regarding nhs appointments , always phone up hosp directly on a regular basis and see if they have a cancellation . This has worked several times for me . Good luck .

in reply to hjane

Hi Hjane!!!

I'll definitely take your advice on board about contacting the hospital directly and regularly regarding cancellations. GP couldn't really give me much help on that and simply assumed they have issues with manpower - maybe not enough staff? That could either mean consultants or admin people, but I don't know.

I really hope my endo will listen as I have trouble swallowing but no visible/palpable goitre despite high antibodies and high TSH. I hope they won't think I'm making it up. :(

Thanks

Jo xxx

Hi Reallyfedup, hopefully the clinic I'm going to is run by nice people but you do get the odd one or two clinics that aren't, I guess. Sorry to hear your one isn't run by nice people. :(

Thanks

Jo xxx

Jackie profile image
Jackie

Hi If it is your first referral and you cannot work with them, then research a really good one, and then ask for a second referral, say personality clash!!!!

Best wishes,

Jackie

in reply to Jackie

Hi Jackie, thanks. Hopefully it won't take too long to see an endo for a second referral. :)

Jo xxx

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