So in Jan last year I got referred to Endo as bloods indicated my Graves had returned. 2 texts received throughout the year asking if I still needed an appointment. Yes! Nothing came through. Fast forward to Jan this year. Again, after bloods results which indicated graves was still hanging round & an urgent referral made I found out just before I got my results that last year's referral had been cancelled. Only when I logged onto the NHS app to get an idea of waiting times did I find out. My GP wasn't aware either. I rang the hospital I'd been referred to & asked why it was cancelled. I was told it was because I'd got my initial diagnosis from a different hospital and consultant, not them!! Really???? I was also told that as my GP had done an urgent referral I couldn't make an appointment, as the NHS app had said to, I had to wait. So now I'm in no man's land, very symptomatic & feeling unwell. While I'm awaiting for them to contact me does anyone have any suggestions as to how I can cope with this until I'm seen? Has anyone ever had that reason for a cancelled referral? Many thanks in advance.
Looking for some advice please - Graves Disease Su...
Looking for some advice please
Hey there again :
Can you please share what these new blood tests say ?
We are still waiting on confirmation of Graves Disease which is said to be life threatening if not medicated - as the immune system Hi Jacks the TSH causing a continuous low suppressed TSH with the T3 and T4 levels building higher and higher - and which must be treated with an Anti Thyroid medication.
As previously detailed with a TSH up in the range I'm thinking this most likely Hashimoto's and when you can experience ' transient hyper ' type symptoms which seem to fit with much of what you are going through :
All things Hashimoto's - thyroidpharmacist.com
HiSo TSH 0.01 range 0.35-5.50
Free t4 45.2 range 10.00-20.00
T3 not tested
Tpoab 180 range "Normal below 60"
Graves was confirmed by Trab back in 2021. Trab wasn't tested this time. Or certainly records don't show it.
I'm obviously no expert but aware it can be serious if not treated. At a loss really.
My gp said he can't do anything without endo input.
Ok - so 2 months ago your TSH was 2.10 - and now suppressed at 0.01 ;
Maybe you have Graves and Hashimoto's running at the same time - this is not unusual as when the thyroid malfunctions there can be several sets of antibodies found positive nd over range - and if Graves antibodies found positive treatment for Graves takes precedence - which is an AT drug - so this time maybe try Propylthiouracil - PTU - as I think you didn't get on with the Carbimazole and stopped taking it - didn't you ?
What was the TRab result and range back in 2021 ?
So is your doctor contacting the hospital endo team and treating you in primary care following instructions from the hospital or arranging an urgent hospital appointment for you ?
Funny you should mention PTU. I mentioned to my GP that I didn't tolerate it very well after being diagnosed. In his referral he said that the course of action would be Carbimazole!!! But needed endo input to prescribe it.
I'd have to search for the results back in 2021.
As for the referral. Honestly no idea. Reading between the lines I think he wants me to see an endo before he prescribes Carbimazole.
But in the meantime as I'm very symptomatic, just trying to carry on as best as I can.
Sorry - I thought you couldn't tolerate the Carbimazole last time around ?
Currently due to the known circumstances many primary care doctors are managing their own patients on AT drugs as the O/P waiting list time is not acceptable in some circumstances one of which is in endocrinology.
Sorry, could have worded that a bit better. Yes I couldn't tolerate Carbimazole yet when my gp has referred me, he's mentioned about putting me back on it after endo input.
So is your doctor going to manage you on the AT drug with endo input -
or are you waiting on an appointment -
some people while waiting - speak with the endo secretary and get put on a cancelled appointment list - and try and jump the queue ?
That's the question! I've been referred as gp can't do anything without endo input. And because it's an urgent referral, when I've rang to arrange an appointment was told they can't make one as I'm an urgent referral. I've gone into the "urgent diary" but no one could tell me when to expect an appointment. I've just looked at the NHS app. Waiting times for sn appointment up to 26 weeks !
Hi SnowQueenOne I’m sorry you are suffering as it is horrendous. I do hope you get an appointment soon? This is what I did- I called my endocrinologist secretary and told her how bad I was. So I managed to get an appointment within a month to six weeks. As I needed my medication. Ive had graves since 2011 and although he finally discharged me last year I still take a low dose carbimazole of 10mg to control it daily. Apologies if this is not much help.
Hi Westie_1
That's the issue. I went private to get my original diagnosis as NHS waiting list was something like 8-10 months. My original endo has been inundated, thought I would have no chance of getting in so thought I'd try the NHS route. But it's been a shambles so far. So as of now I don't have an endo at all. You're right. It's horrendous!
That’s awful someone should be helping you It’s disgusting how people are treated. I’m really sorry you are not getting anywhere. Go back your GP and get either your GP or their secretary to contact the Endocrinologist and say how serious your symptoms are getting and you are supposed to be an urgent referral. I know my surgery/ secretary chased things for me in the past! Good luck to you hope your wait is not much longer!!
Thank you Hadn't thought of going back to my GP albeit after he did the referral someone at the surgery rang the hospital to make sure they treated it as urgent. Unfortunately when I tried to make an appointment, I got told as I was in the urgent diary there was nothing they could do. Stuck between a rock & a hard place. Just don't know how to deal with these symptoms and how I'm feeling.
Well if you are up to it don’t call the appointments team at the hospital as they can’t do much. Call the hospital you have been referred to and ask to speak to one of the secretaries at the endocrinology department. They have always been helpful with me? Apologies if you have already tried this as I don’t know who you contacted at the hospital. I really feel for you as it looks like you’ve waited over a year! I have also added a link to see if this could help you naturally whilst you wait? But I think you have probably already looked for anything to help. Keep pushing you need to be seen if all else fails contact PALS and see if they can do anything for you don’t give up call them all as much as you can until you get your appointment. Take care.
btf-thyroid.org/diets-and-s...
Aww thank you so much. I haven't tried Endocrinology direct as have only been given one contact number. Thank you for your help and guidance, really appreciated
This does not even mention your reason for cancellation! bestpathway.co.uk/why_would.... I'd contact PAL's at the hospital who regected you and ask them to look into it.
Hi Digger0
Yes I think I will. I have family members who are nurses, by trade, and none of them have ever heard of the reason I was given for cancellation. Its annoying and very tiring!
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