Is it ok to be told in Dec 2018 my next follow up would be feb/March to receive a letter for a date end of June, to ring and say I was asked to be seen sooner, to finally get a letter for mid April, to turn up at the appointment, to wait 45 mins past the slotted time, to find a member of staff to be told the clinic was cancelled, to be told they left me a message when in fact they didn’t even have the correct phone number for me, to be told they’d write with an appointment for May, to chase them, to be told they’d rebooked me for the end of June but it looks like that’ll be cancelled, to then call me back and leave a message that they’ve booked me in for October!!!!! Because they want continuity of care with the same registrar. No advice re when I need next bloods done, no sense of care for how I am as a patient. To be told I would be seen after 3/4 months and now it’s nearer 11!!!
Feel totally abandoned and pretty upset.
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No, I’d say your treatment is definitely not ok and I’m not surprised you are feeling abandoned and neglected.
That is a very long time between appointments when you consider I saw my GP, had bloods taken and was diagnosed and started on carbimazole within two days of seeing my doctor. OK I didn’t actually see an endo until three months later but by then I’d had a second blood test and a letter from my endo with instructions on what to do next. My entire treatment was finished 12 months after diagnosis.
What stage are you at with your treatment?
What are you taking in the way of medicines?
Apart from ignored and neglected, how are you actually feeling in yourself?
Have you had any recent blood tests throughout this fiasco?
Have you spoken to your GP about this? Maybe your doctor could push for an earlier appointment for you or at least send off bloods for your endo to comment on.
Anyway, you have my sympathy, fortunately I’ve never had to complain about a medical issue but I think you would be quite within your rights if you did.
I was diagnosed within 24 hrs by my GP with hyper in April 2018, first appt with endo August, positive Graves AB sept, next endo appt Dec and then all the problems since without seeing any health professional.
Bloods were requested every 6/8 weeks and last ones were done early April in preparation for my appt that they cancelled! So it’s now been 6 weeks since bloods.
I’m on 5mg of carbimazole and I fluctuate with tiredness in the day and unable to stay asleep at night. Sometimes my throat feels swollen, other days normal. Still have very short light periods. Irritable. Mild TED in left eye. Hair loss better. Maintaining weight ok. Heart rate ok apart when exerting
Im not much of a help because I was treated with block and replace which involved a large dose of carbimazole (40mcg a day) and ever increasing amounts of thyroxine
Hopefully someone who is being treated by titration - where you are given a smaller amount of carbimazole and no thyroxine - will come along and advise you.
My throat used to feel peculiar too, I had a wbc blood test first time which was fine, next time the doc said to wait and see and that suited me fine.
TED, my eyes felt terrible but didn’t swell and I got by with just using loads of preservative free artificial tears throughout the day and I was lucky it didn’t get worse, I don’t think yu can predict who will get TED until it happens. I reduced my thyroid antibodies though by going totally gluten free but who knows if it was that or a coincidence and they might have been on their way out anyway. I wouldn’t take the chance and eat gluten again though.
I think the tiredness just goes with Graves and with hypo too - I used to feel utterly exhausted - there were times when I’d have loved nothing thing more than to lie down on the floor in the middle of Tesco and go to sleep.
Oh you poor love 😢 Can you speak to your GP and see if they have any influence? Can you speak to PALS at the hospital? Any other forms of complaint? Phone the receptionist/PA for this endocrinologist and ask them what their complaint procedure is?
Do you get copies of your results? There’s an element of self management required with Graves in my experience, since we see the Endo a lot less often than we require dose adjustments. Definitely ask your GP if they’ll help you titrate. You sound like you could still be a bit hyper to me? If you have TED you should push for a referral to an ophthalmologist who specialises in this and can monitor your eyes properly. The normal Endo wouldn’t be the right person for this aspect of the disease from what I’ve read.
Hi. I do if the hospital send them to my GP like they’re requested to but it doesn’t always happen.
I am definitely going to contact my GP. I think I’m already on titration as gone from 40-5mg but been on 5 since December and looks like will be that way until October!
The endo sec has left me a msg this morning apologising again, said I can contact PALS. They may make a clinic available in June but that’s not set in stone
Staying on a low dose longer term is good. You only achieve remission when your antibodies are negligible, not when you are euthyroid. I’ve made the mistake of stopping too soon in the past without rechecking antibodies, and relapse is more likely. But you do need to be monitoring those numbers. I actually go hypo on 5mg, I’m on 2.5mg at the moment. If you’re not getting full thyroid function tests done every month or 2 (TSH, FT4, FT3) I would recommend using someone like blue horizon or medichecks to monitor it yourself (finger prick tests). You must dose on FT4/FT3, never on TSH, when you have Graves. I notice you’re in West Sussex, I am too (Haywards Heath area). I ended up paying to see my Endo privately, but the monitoring tests are done by my GP on the NHS. Frankly I rarely see the Endo, he’s about as useful as a chocolate teapot. I’ve just started seeing someone else in London to look at the bigger picture.
You set your dose of carbimazole to where your thyroid hormones T4/T3 sit. TSH which is a pituitary hormone stays suppressed for a while even when thyroid hormone levels have normalised so it shouldn’t be used to gauge therapeutic response. Graves antibodies (TSH Receptor Abs or TSI) should be checked before stopping carbimazole. That doesn’t mean Endos alway do this. They usually plump for an arbitrary 18 months on meds and a “hope for the best” stance. Stupid really, when they could just test the antibodies to see if remission has been achieved. You just have to do your research and advocate for yourself.
It's definitely not good enough, but the most important thing is that you aren't being tested regularly.
If they would agree to tests (FT3. FT4, TSH) even every eight weeks, it wouldn't be so bad - that way, if your thyroid levels suddenly take off (or even drop into the hypo range), they could potentially increase your carbimazole/bring forward your appointment.
They’ve called me back today and will book me in for June, apparently anyway.
I’ve been having bloods since last April every 6/10 weeks ish but they told me yesterday to just have next bloods done 2 weeks before appt (October) unless I feel unwell in the meantime. So they were prepared to leave me untested for months. I’m back “in range” for last few months so hoping that’s a good sign
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