Anyone had an endo refuse to see them after a referral?

After seeing my gp last week she agreed to refer me to an endo. I had the choose and book letter come through so just phoned to make an appointment and have been told my notes were reviewed by the endocrinology team at the local hospital and they have written to my gp with some guidance so no appointment can be made. I'm guessing that as they are not willing to even see me that the guidance will be along the lines of "normal bloods, do not treat" even tho they are borderline and I feel terrible. I have research supporting a trial of levo in these circumstances but gp said she couldn't prescribe, hence the endo referral. Obviously I need to wait for my gp to contact me but if I guessed the outcome right, where do I go from here?

14 Replies

  • I think I read somewhere that there's a move within NHS to place care of thyroid patients with GP only and Endo will not be available for thyroid patients in due course. Wonder if this might be the start of that?

  • That's ridiculous, thyroid is part of the endocrine system!

  • NO, but the haematologists refused to see me with a ferritin of 16 (15-150) because my haemoglobin was within range!

  • Self treat with NDT

    but get tests done for




    vit d3

    as they are likely to be low

  • I'm not overly keen on the idea of self treating but if that is my last resort I will. Wish I could afford to go private 😕

  • Well given the attitude of both endo and haematology in your area your clearly going to get no help anywhere local even if you could afford private

    I have 4 members of my family self treating and they know it works as opposed to a life of pain and hell on thyroxine or t3

    and my husband will bang all the drums for NDT after his hell on thyroxine and t3 and he is supported by his endo and GP

    Theres very good info on about self treating

  • Hi, my GP said the same thing - along the lines 'oh, cardiologists were against GPs prescribing beta blockers and now we are doing it all the time, so it shouldn't be too hard to manage the thyroid issues'... couldn't believe my ears...

  • Let's hope he has said to try you on ......... And to see him if no improvement. There is usually a long wait to see an Endo so that could be a sensible route to take. Let us know what's happening when you see your doctor but try not to worry in the mean time.

  • I feel for you. I had a similar situation with my GP who wouldn't agree to a trial dose of levo as my TSH was 2.5. He did agree to refer me to endo who I waited 9 months to see. By that time my TSH had gone up to 3.5 and the endo did agree to treat me. I'm on the trial dose but only 25mcg. Initially felt the benefit for around 2 weeks but now feel awful again so waiting for an increase. I hope you get somewhere with your GP, can you make an appointment rather than wait for them to contact you?

  • Thanks. I have provisionally made an appointment with my gp but it's not until 28th April. I'm hoping to have heard from her before then. It would be nice if the endo has suggested a medication trial but I'm not getting my hopes up! My plan is to ask for a second opinion from a different hospital if they say no, and I have done some research on self medication as a last resort.

  • rayjay, most endos seem to know precious little about thyroid issues. from what I read on here they seem to be only interested in diabetes. My GP contacted local hospital endo when my TPO levels were very raised (I had to ask GP for the blood test). The reply from the endo was no treatment needed just continue with levo, which I had been taking for 8 years. I then read about antibodies and decided to go gluten and lacto free and felt a lot better. Like many on here I think you will have to DIY! I managed to get GP to do most blood tests, the rest I do privately and take supplements, vitamins etc and almost feel normal! I feel it is very unfair on anyone who cannot afford DIY and has to rely on the mostly appalling health system we now have. I rather get the impression that A&E and cancer services are mostly the only services available now.

    You can be assured of plenty of help and su[[ort on this site. Do hope you get sorted soon.

  • I'm in Scotland so I appreciate things may not be identical, but that just doesn't sound right to me, Rayjay. I would think you are entitled to see someone 'higher up' if the GP can't or won't help you.

    That said, you don't know what's been suggested by the endo team yet and they may surprise you. Maybe wait and see what's going to be suggested, but if they are just churning out same-o, same-o then I think you need to find out your legal rights as regards treatment.

  • I will definitely wait but I'm not holding my breath for a positive outcome. I will happily eat my words if I'm wrong tho! I know that persistence can pay off tho so I won't give up the fight easily. I had to fight last year to get a hysterectomy, although ironically I have since discovered that low thyroid can cause the problems that I had the hysterectomy for :-(

  • Ooh, that was a bit of a crushing blow. Bit like me when I discovered after I removed my gallbladder that some of the symptoms were not from that at all, plus I got some new ones because of the missing gallbladder, and NOW I discover that thyroid problems seem to cause gallstones so maybe if I'd sorted out the thyroid problem sooner I wouldn't have had to lose it at all. Ah, God bless Western medicine...

    Best of luck with your endo's report. Here's hoping they give you a nice surprise to your advantage!

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