Meeting the specialist

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I finally got to meet that all-important, mythical creature that I’ve been longing to see… the specialist! My mum (and plentiful fountain of knowledge and resource) had a recommendation for someone local, so we begged my GP to refer me and voila! 3 days later I was sat in his office getting the time and attention I had been craving.

I was referred to an Endocrinologist who concluded that my on-going symptoms could be down to three reasons:

  • My body is failing to convert my medication (Synthetic T4 hormone) into T3, which makes my body function (or something slightly less dramatic but along the same lines)
  • My body is over-producing steroids
  • I have Polycystic Ovaries (PCOS)

Honestly, he made it look easy.

From the research I have done, a lot of people fall into the first category, where their body doesn’t covert T4 into T3, so fingers crossed this will be the case for me too. According to my Dr 1 out of 10 people don’t convert, so if you think you might fall into this statistic then get your butt back to that Drs office pronto! I don’t know what the ramifications of over-producing steroida s are (Maybe I’ll be a female Arnie Schwarz?) but I know that PCOS can make it difficult to have children so ‘no thanks’ to that.

After he explained all this to me (I even got a diagram to take home) I came out of the appointment feeling sufficiently reassured. This man obviously had a lot of cases like me and was able to point me in the right direction quickly and without judgement. He believed everything I said and restored the dignity I had lost when I begged to be referred to him. It was clear there would be no fight for tests or pushing for answers, he was 3 steps ahead. Literally. And it was a breath of fresh air.

I am booked in to have a blood test and ultrasound this week and I will get the results a couple of weeks after (HOORAY! Hello progress, its nice to meet you) so I will update you guys when I know more.

On another slightly related note, I was sick to my stomach to realise the small yet blindingly significant differences between being referred to a specialist through the NHS and going privately. I have been lucky enough to go through the process privately through work, but before I realised this was an option I started to go down the NHS route. I got my referral on 9th September 2013 and they wanted to give me an appointment in December *cue look of exasperation*. When I went privately and cancelled that appointment, I was given a new date just 3 days after I made the call. 3 DAYS! How is that even possible?! It’s the same dr at the same hospital but there is a 3 month difference in waiting.

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Its sad to think I would have waited 3 months for the same diagnosis that took him half an hour to figure out. I would have got the same results just 10x slower because of the money (or lack thereof). I feel extremely lucky that I have been able to go through this privately and get the attention that I need, but after being on both sides of the fence I will say that if you’re going through the NHS you just have to be patient, you will get your time. Its frustrating and unfair but we will all get the answers we need if we are just patient and don’t take no for an answer. If you’re not satisfied keep going back until you are.

Wish me luck for my tests guys!

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3 thoughts on “Meeting the specialist

  1. samanthatimms1

    Wow, after my own heart. I have just sat here reading out what’s in front of me to my partner. Wow.. I keep saying it. I’ll explain why, it will likely be long, and I apologise in advance, I just don’t know how to make it smaller, yet simpler.

    Been unwell for 19 months and a very hard share of the NHS (and private when I was lucky that is) to begin with, took months, like yourself to see (in my case), the NHS gastroenterologist . Appointment referral happened in October 2012, BUT listen to this… appointment date, January 2013 . Unbelievable, and my health was severely decreasing. Like you, it was to get a diagnoses and a test done. That January appointment would have been the consultation, to then after, wait for the appointment AGAIN for the endoscopy that I needed. Clap hands to the NHS, for I don’t bow to their services. (angry face)

    Anyhow, due to my rapid decrease in health becoming a speedy one, I was very lucky that my partners parents paid for me to see a Gastroenterologist private, AND to have the Endoscopy privately too £1600. So that happened like this…. it was October 2012, Referral made from my GP. End of October, Endoscopy and consultation done with private Gastroenterologist, with pretty much results given as soon as I came round from the procedure, but i also had to wait for confirmation from biopsies which came later. 6th of November 2012, I was firmly diagnosed from the biopsies from my Endoscopy with Coeliac Disease, shockingly fast-this was my first experience with private. We all hoped I would become better, that would be the end of my journey. Unfortunately 12months later, I’m still extremely poorly (my journey is described in my blogs).

    So them 12 months have been months of waiting for fellow NHS appointments with NHS gastroenterologist (yes NHS one this time, I chose to stay in NHS so therefore I didn’t have to stay down the private route, I sadly couldn’t afford too). An appointment on the 31st May, then a colonoscopy on 1st July 2013, to then receive them results on September 11th 2013. Between that time, them 5 months from May to September 2013, was how long I waited till I actually sat in a consultation with this NHS Gastroenterologist to talk face to face . By this time…. (wait for it….) …. the consultant had forgotten who I am, (thanks to the NHS system that leaves it so long inbetween consultations that it isn’t possible for the consultant to remember his patient or their symptoms, (and get their weight extremely wrong by 13pounds), nor give me my Colonoscopy results (though that was the point of the appointment)). You would think they read up on your notes prior to you stepping into the consultation room, wouldn’t be much to ask right?

    Anyhow, in the meantime from July 2013 to September 2013, I had been asked from the NHS Gastroenterologist, by letter, to have some tests done for Addison Disease. (this will bring me to the point of what I’m trying to say, in relation to this blog of yours that seriously made me go WoW-please hold out if you can, sorry I know this is unexpectedly long). Test came back to my GP, and they were not right, so he had me have them redone.

    So again I explain, we approach that horrid September appointment with this consultant, he didn’t see much wrong with the results of the test that my Doctor felt needed to be redone. But he said he would pass it to a fellow NHS Enocrinologist to have a look at these questionable but yet not-so-questionable, in the eyes of this consultant….results. I couldn’t wait around after that horrid appointment, it basically caused me to feel so let down and so unstable on being able to pick myself up again. Wouldn’t anyone react that way from waiting 5months for that appointment in September? For only the consultant to have forgotten you, and got many things wrong in his letters about our recent consultation (which I am left to correct him on soon).
    SO I visit my doctor the next day, 6 days later my doctor admitted me onto a ACC ward to have the Synacthen test. 4 days later I am called in again to have more tests, but this time it was instructed from that NHS Encrinologist that the horrid NHS Gastroenterologist spoke with, because of my results (which I remind, the gastroenterologist didn’t see fit that we even bothered with a Encrinologist, I have the last laugh I guess)
    Once tests done, I have now been referred to Encrinology, BUT wait for it…. this is the part I have been leading up to and by now you can likely guess what I am going to say,

    3 MONTHS!!!!!!!!!!!!!! Just like I read in you blog here.
    SO its this October 2013 when I received the letter with the date of my appointment which is in December 11th 2013. Which I must add, my results are accessible to my doctor who I have already seen to ask about the new results. His response was “there not abnormal, but their not normal”. What on earth does that mean lol. So I am now waiting 3 months to sit down for a consultation with the NHS Encrinologist to discuss further into these strange results, which will likely be 20mins, for him to advise more tests. Which we know will mean likely another 2-3-4 months, to then have the test and then wait another 2 months for the appointment to have the results.
    Anyhow I visited my doctor to insist he try’s to do something to shorten the wait for this December appointment, he has written to the Encrinologist. One week later I haven’t heard anything from my doctor, i had previously thought last Thursday, when I received my December appointment, to get this Encrinologists secretary number, to question about seeing him privately. But I stupidly and naively thought they would laugh because you cannot possible do such a thing, it isn’t possible.
    NOW… thanks to YOUR blog post (which was the main reason why i have written such a essay and unfairly taken up half your comments section and your time) will be now telephoning the NHS Encrinologists (Dec app) secretary to request to see him privately as soon as possible. So truly, thank you.

    ((My original plan B, if my doctor had no luck with that letter, was to see my Private Gastroenterologist (who keeps am eye on me like my guardian angel, because of my poor experience’s with the NHS) and see if him, himself could speak to a Private Encrinologist within his Private hospital, to seek advice on what should be done next.))

    Again thank you, perhaps without realising, through writing this blog with these means to, have really impacted on a blog reader. I just wanted you to know that. This is the first blog I have come across where someone has actively been in and between the Private and NHS healthcare system. Realising the many flaws that lay. Its horrible once you see them flaws, just unfortunately for me i cannot afford to stay private, but I try to use it where possible. Fingers crossed, sorry once again for my very religiously long comment. (couldn’t think of a shortened way to write it, especially when its 19 months I’m trying to explain here, and I’ve barely touched the surface).

    I shall certainly follow your journey, and I truly, deeply, wish a heartfelt GoodLuck on your results. I certainly know how your feeling right now!

    Reply
    1. Elizabeth Murray Post author

      Hi Samantha!

      Thanks so much for reading, I’m sorry to hear about your situation. I can’t believe how lengthy the process can be with the NHS, you try and be patient and, even though it may not be the case, you feel like you’re not a priority.

      I hope it is ok but I have transferred your comment over to my main site lilybetmurray.com, where I will be posting in future. Have a look!

      Thanks, Lilybet x

      Reply
      1. samanthatimms1

        Oh thank you. Have checked it out, can I follow your own domain website, perhaps I missed something but can’t see a follow? Or perhaps its a website where I need to just keep popping back here and there? Thanks Sammi x

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