ok I’ve gotta ask because I was just threatened with discharge from my endocrinologist (granted probably justified) but … I have graves and have been “treated” with Carbimazole for approx 18 months. I received a telephone appointment for about two weeks before Christmas which I declined as I find these appointments really trauma inducing (historical medical trauma) and didn’t want that right before Christmas so requested it be after if I had to have one…
I questioned as to why I needed an appointment as I don’t get anything out of them, ie I don’t find them informative or useful in any way. So far all the drs have done is introduce themselves, maybe ask how I am generally to be polite, they then tell me what my latest blood results are (which I’ve usually already received in the post), ask me if I’m sweating, which I never had that symptom so not relevant, then ask if I have any hand tremors which it was only fine on diagnosis which I hadn’t even noticed until pointed out and don’t appear to have any despite checking 10 times a day. They then tell me to keep taking medication prescribed.
Obviously I thought I’d ask if these appointments are necessary as I don’t find them helpful and honestly the stress I have to go through on the build up just isn’t worth it when the same information gets sent out in a letter?! At which point I’ve been asked if I’d prefer an alternative appointment or to be discharged from endocrinology “care”.
Now don’t get me wrong I understand the reaction as essentially I’ve just asked them what’s the point in you?! But seriously am I meant to be getting something from these appointments? As so far regardless of what I say my experiences aren’t listened to and I get the same “keep taking medication as prescribed”… should I be doing or saying something in order to get anything from an endo appointment? GP won’t take on medicating a graves patient without endo input so I have to have one but am I wrong to question this? Should i be doing something to make them worth while?? I honestly don’t understand the point to them???Feeling deflated now 🤷♀️ 😞
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Well, I know exactly how you feel. I once said to the endo I was seeing that I couldn’t see the point of turning up and waiting in a massive queue when all they really needed to see how I was doing was the results of my blood tests', The doctor’s face was a picture as was the student sitting in with him. Like you are finding, I would wait ages, the only person I saw regularly was the nurse who weighed me, I attended a big teaching hospital and I never saw the same endo twice. It was just a case of them saying ‘Hello, how are you?’ Followed by ‘Goodbye’ a few minutes later.
I was always fine and I always felt they probably had a discussion about which patients they were going to be seeing and decisions were made before I even arrived, it wouldn’t have mattered what I had to say - however that was back in 2012 and as we all know one way or another things are different now and they don’t like patients upsetting them in any way.
As you say though GPs won’t touch you without input from an endo. Could you apologise for upsetting them (if you feel you did ) and ask if you could have bloods checked and then have either a telephone or an online consultation? Tell them you get terribly anxious about it all.
I also discovered it could be quite easy to upset people when I had Graves - I tended to be a bit intolerant - think it goes with the condition.
Yes it was an appointment sent to me via email and I replied to that email and received the response via an email from his secretary. All my appointments are telephone appointments as I refuse to go in (despite working for the trust I just can’t attend appointments anymore). I’m in the process of having myself lifted from various screening programmes now as I just can’t tolerate the medical profession in this way anymore - I understand and accept the consequences. He did say “do you want a follow up or to be discharged?” So a definite ultimatum 😂 however I requested a pointless follow up for after Christmas instead (I didn’t say pointless but they are) - although I don’t feel I upset anyone by questioning the need for the appointment?! I get it but … I just don’t understand the need for appointments when patient experience is not considered 🤷♀️ he could just send his evaluation of the results in the post … no time of anyone’s wasted then 😞
That was exactly what I thought. Getting myself there then all that waiting around the anticipation of something interesting happening and then ….. nothing much.
When people ask what to expect on a consultant visit I always say not to get their hopes up because it will most likely be a big let down.
Better to have the telephone appointment than to be discharged , I know exactly where you are coming from though.
I have trauma over medical stuff too. I changed GPs because of it. I found it very useful to share an explanation of my trauma (had to more than once) but it has helped some aspects be more sensitive.
Looking back it was no different in 2004 - and when I questioned why I never saw the same doctor at my appointments just told they were all just on rotation and getting ideas on where they might like to specialise.
The only difference was the fact I was told at my very first endo appointment that I was to have RAI the following year as it was safer than staying on the AT drug - which upset me a bit as I was very well on the Carbimazole - but at the time I knew nothing and trusted mainstream medical had my back.
Thinking on - for me there was little point - and if the skill set isn't within the hospital department - you're likely be on too high a dose for too long - end up hypo with the brain fog and then too confused to know your own mind.
That’s awful - I’m becoming more and more disconnected from my healthcare these days it’s hard to get motivated towards it at all - just so deflated plus I think I’m going too high again since messing with my meds but then I always think that 😕
Over thinking and thyroid are for the most part best buddies - but when levels are slightly off can play havoc with your brain - sometimes - just getting some distance from your own thought
Interesting article - After sleeping on it I've asked for a face to face appointment - I don't think I'm getting heard via email and telephone - I stated I will attempt to put my anxieties aside and attend clinic - I will see what they come back with
Yes - just speaking from my own experience back in 2004 I had to have face to face consults every 6-8 weeks at the hospital but there was no information forth coming but BTF leaflets to take home and read :
I still have these leaflets - reading them now I find them biased and not fit for purpose today - and recently checked and it seems the BTF leaflets haven't been updated with the most recent research.
I'm afraid Graves is a poorly understood AI disease - with knowledge and research limited in mainstream medical and you do need to try and be your own best advocate which when with Graves can be a challenge too far some, most, of the time.
I can't imagine not having a Face to Face medical consultation - though it doesn't necessarily achieve a different or better outcome -
Medicine is about achieving the best health outcome for the patient and I'm not sure that can be achieved by treating bits of the body as though they are spare parts -
as humans we are so much more than the sum total of our parts - or a blood test result and / or a mathematical equation.
Clinical symptoms, stance, interaction, conversation, and understanding can say so much more about a person - but now appears to be somewhat irrelevant.
It's your choice and fingers crossed you will find this option suits you better :
The endocrinologist needs to monitor you according to the guidelines. It may seem that they are just asking you how you are feeling and looking at the blood test results, but the thing you're not aware is that they are also looking at you and your general health and demeanour. Good doctors can tell a lot by looking at a patient.
Yes, I can see what you are getting at but good doctors should communicate with their patient so that the patient isn’t left feeling like no one important is feeling.
My doctors appear to look at my general health and demeanour and decide I'm a pain in the posterior, so I have to sort my own treatment. It certainly should be as you describe, and maybe it was once, but doesn't appear to be now in most cases, and I think that's true for a lot of us here. I might as well talk to the doctor's computer myself, or just not bother.
You’re so right. At my most recent consultation I really felt like ‘the enemy’. Suspect the computer would have been friendlier and less judgemental - in that I could sense that the doctor I spoke to was not going to be.ieve anything I said to her so I definitely felt like the enemy. 🤣
I have got the distinct impression that it is part of a system, you are a tick list. Most Endos are diabetic specialists and seem to not know anything about the thyroid, so the quicker they can get you out of the door before their ignorance shows the better. I may be a little jaded...
I feel the same way - like I’m a tick list - my estranged hubster said to me last night you need to say this and that - I’m said have you ever experienced being assertive as a woman in a healthcare appointment? Coz you’re in for a shock as to how you are received! He stood with his mouth hanging open as I explained how “you’re just being emotional” “I think it’s probably stress have you tried yoga” etc etc 😂
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